Confessions of a Young (Looking) Social Worker

In Which I Quit

2011-08-03T11:07:00.003-05:00

Things have been quiet here for several months. I was limited by my organization's social media policy, to be sure, but I was also limited by my own concerns.

You see, I haven't been happy in my work since January. I survived a brutal weekend on-call, a coworker went on bedrest leaving me and another coworker to cover, and my division continued to use me inappropriately. I can't tell you how many times I learned about a tumor progression or strained family dynamics weeks or months after the fact.

The division saw me as the bill payer and resource keeper. Social work is so much more than that.

Was I able to educate families beyond the division's limited use of me? Absolutely. Was I able to do a lot of good? There's no doubt in my mind.

But I felt like I was drowning there. And in the midst of all this, my old dream of writing resurfaced.

My last day of work was June 30. I can't say that I'll never come back to social work- it is in my blood after all- but I want to see where writing will take me. I'm burned out and need to reacquaint myself with myself.

In the month since, I haven't missed being there at all. I'm infinitely happier. I know without a doubt it was the right decision.

I miss my coworkers and the families I worked with but I'm excited to see what will happen next. I don't regret my time there- it wasn't all bad- but it's definitely time to move forward.

Thank you, dear readers, for all you've helped this blog to be.

On-Call Superstitions

2011-01-02T20:39:00.002-06:00

I'm in the middle of my first weekend on-call. It's strangely scheduled due to the holiday. On Friday night, off New Year's Day, back on for Sunday and then Monday, which is the observed holiday. Let's just say I can't wait for 8 am Tuesday morning!

I realized I have a few things that I will or will not do while on-call, as if these things can improve my odds.

I don't make plans. I hate leaving things early and I'm always paranoid I won't hear the pager.

I don't light candles when I'm at home.

I don't make any meals that involve lots of preparation. Quick and easy is the name of the game.

I will often wear more office-appropriate attire while I'm home. If I'm ready to go, then I won't be called? It doesn't seem to make any difference but in my mind.

I try to catch up on things around the house. Cleaning, picking things up, laundry.

If I'm able to make it to church, I sit in the back at the end of the row. Just in case.

I thank God for every hour, or half hour, that I do not get paged. It helps me keep a more peaceful spirit. If I do get paged, I start praying for wisdom and strength!

What are your on-call superstitions?

Pediatric vs. Hospice Social Work

2010-12-31T15:50:00.003-06:00

Can you believe I've been at this for 6 months now? Sometimes my pediatric hem/onc world doesn't seem that far from what I used to do in hospice. And yet, there are some noticeable differences!

In hospice, most of my patients were over 70 yo, with a few being in the 40-69 range. I rarely had a pediatric patient. In pediatrics, all my patients are about 20 yo and younger.

In hospice, I saw a variety of diagnoses. In pediatrics, my specialities are brain tumors, sickle cell, and benign hematology. Whereas in hospice, I knew a little about a lot, in peds, I know a lot about a little.

In hospice, my desk was my dining room table and whatever I could fit in the trunk of my car. In pediatrics, I share an office with a view. I have my own desk. I have two drawers of a large filing cabinet. Space, space, space!

In hospice, I was on the road all day doing home visits. I had the largest territory of the social workers so I did a lot of driving. In pediatrics, I come to work in the morning and I stay in the same place. I vary between the clinic and the hospital. It's really nice to be in the same place.

In hospice, I worked primarily with the patient and their family. In pediatrics, that's still true. The older the patient, the more I'll work directly with them, instead of just their parents.

In hospice, I had a cell phone, a laptop, and landline voicemail. In pediatrics, I have a pager, landline phone and voicemail, and a desktop computer.

In hospice, I was on-call an average 72 hours per month over a weekend. We didn't get any time off for being on-call. In pediatrics, I have one day and one night call per month and 2 or 3 weekends per year, plus a rotating holiday every few years. We get one post-call day after weekend call or holiday call.

In hospice, I provided emotional support, counseling, and prebereavement. In pediatrics, I still do the same thing!

In hospice, I had to all sorts of case management. In pediatrics, we have case managers that take care of that stuff. I still educate families about resources, however.

In hospice, I worked with 3 other social workers. In pediatrics, I work with a billion! (Maybe not quite that many but the support is phenomenal.)

There are many more comparisons I could make but I think you've got the picture!

The First One

2010-12-20T13:33:00.002-06:00

You don't go into hematology/oncology without knowing that at some point, one of your patients will die. You hope they won't, to be sure. However, statistics don't lie and no cancer center can completely beat the odds. I didn't know how long I would be at my new job before I lost my first patient. I wasn't sure if the death of a patient here would be different from the death of one of my former hospice patients.

Recently I lost my first patient, after almost 6 months working here. You might think that it was one of my brain tumor patients. That's who I thought the first loss would be. We're both wrong.

A teenager with sickle cell disease. It makes me so angry because this death could have been prevented. People with sickle cell can grow up to have healthy, productive lives. The operative word is CAN.

If you take your medications daily. If you keep your routine doctor appointments. If you take complications and side effects, from fevers to pain crises, seriously.

This teenager did not. There was a long history of non-compliance, some of which was the parent's fault, some of which could be explained by poverty, and some of which was completely this patient's choice. Even when struggling to breathe during what turned out to be the last few months of their life, this patient still did not take their hydroxyurea and other important medications. Yes, it was too late to reverse the lung damage and heart failure but their life could have been prolonged and they could have been so much more comfortable.

That's why I'm angry. This death should not have happened. If you have sickle cell and are reading this, I implore you to take your medications as prescribed and to keep in regular touch with your sickle cell provider. It can make a world of difference.

This teenager was so sweet, so polite, and deserved so much more. I'm glad that there was time for the patient to express their final wishes, for us to have a good palliative care discussion. They were able to go home and celebrate one last birthday with the family. They died in their mother's arms. As far as hospice goes, everything worked out beautifully.

If only it could have been prevented.

Aidan's Monsters

2010-11-26T21:17:00.004-06:00

I hope you've already come across this story but just in case you haven't...

Aidan is 5 and he has acute lymphoblastic leukemia. He likes to draw monsters. His aunt posted his drawings on Etsy to raise money for the family.

I like that Aidan likes to draw monsters. I like that this has turned into a unique fundraiser. But this is the part that I really like.

"The Reeds made a conscious decision to live on one income while their kids were young. Katie has been a stay-at-home mom since Aidan was born; Wylie works full time training technicians who build components for airplanes.

Before our second baby came, we had already cut everything frivolous out of our budget,” Wylie Reed said. “We don’t have a cable package. We don’t drive new cars. ...'"

So many of the families I work with were already living beyond their means before their child was diagnosed with cancer. Whether you have private insurance or not, there are so many extra costs when it comes to a sick child. If both parents were working, often one will need to quit in order to take their child to clinic or stay during hospitalizations. When not seeing doctors, the child needs 24/7 supervision because things can change from moment to moment. This, of course, can be financially draining. If the family was already 2 or 3 bills behind before meeting with me, it's a huge drain on whatever resources I can provide them and generally still doesn't motivate them to change their ways. The fact that this family had already done everything in their power to live economically was very encouraging to me because it is so rare. And when you think about it, that might be why our nation is in the economic mess that it's in.

Aidan's aunt was really touched by his family's plight. Aidan's dad would have to miss a week of work in order to be there for his treatments and so he decided they would need to sell their house to make up for the loss of income. She didn't want this to happen and hence, the Etsy site was born.

At $12 apiece, the monster drawings have raised over$30,000 for the family. They will no longer have to sell their house.

Read the family blog here. Check out and buy Aidan's drawings here.

More Pediatric Resources

2010-11-05T08:00:00.000-05:00

Here are resources related to support, information, fun stuff, wigs, and more. As always, comment if you're aware of others!

Camps, Fun, and Wishes

Afghans for Angels- www.afaproject.org

-Free afghans or chemo caps for children with life-threatening illnesses

Angels for Hope- www.angelsforhope.org

-Free crocheted angels, butterflies, or smiley faces for those in need of hope

Audrey’s Umbrella- www.braintrust.org/umbrella

-Encouraging mail (cheerful cards, letters, and small gifts) for patients with brain tumors

Believe in Tomorrow- 800-933-5470 6601 Frederick Road, Baltimore, MD 21228 www.believeintomorrow.org

-“Home away from home” respite houses in Maryland for families of children under 17 receiving active treatment for a life-threatening illness

-Includes beach and mountain locations

Benefit4Kids- 1-877-B4K-KID0 www.benefit4kids.org

-Outdoor wish-granting program for children under 17 facing a terminal illness, includes hunting, camping, fishing, and more

Chemo Angels- www.chemoangels.net

-Adopted by a Chemo Angel and Card Angel who send cheerful notes and occasional small inexpensive gifts during chemotherapy or radiation treatment

Childhood Leukemia Foundation- www.clf4kids.org

-Hope Binder- a way of organizing treatment protocols, medicines, doctor's appointments, blood counts, physicians, hospitals, nutrition concerns, insurance benefits, calling cards, informational booklets and more

-Phone cards to use while away from home for treatment

-Wish Basket Program- Available for Baby, Child, or Teen, may include toys/games, pajamas, personal care products, and $50 Wish Card

Children's Wish Foundation International- 800-323-WISH www.childrenswish.org

-grants wishes to children with life-threatening diseases and provides opportunities for families to enjoy themselves away from the hospital environment, national

-Holiday Program, Family Focus, Hospital Enrichment, Young Minds (infant to age 3)

Friends of Jaclyn Foundation- www.friendsofjaclyn.org

-Child is adopted by a college or high school sports team within their geographic area. The child is involved with the team through messages, emails, Facebook, etc. and often invited to attend games with their family.

Hugs and Hope- www.hugsandhope.org

-Child’s story is featured on the website, people can then view it and send Happy Mail (cards, letters, small gifts) to your home

Love Quilts- www.lovequilts.org

-Personalized cross-stitched quilt for children with life-threatening illness

Make a Child Smile- www.makeachildsmile.org

-Child is featured on MACS website, where visitors can then view profile and send cards, letters, and small gifts by mail

Project Linus- www.projectlinus.org

-hand-made blankets and afghans

Songs of Love- 800-960-SONG www.songsoflove.org

-Creates a free personalized original song for children age 1-21 who face life-threatening or life-limiting illness

- Each CD is professionally produced with lyrics containing the child's name and references to all of his or her favorite things. Songs are written and performed in any language in the musical style that the child likes best (pop, rap, rock, etc.)

Special Love- www.specialove.org

-Located in Virginia, camps for childhood cancer patients and their families, including camps and getaways just for parents and siblings

There’s a Monkey in my Chair- www.monkeyinmychair.org

-For children age 4-11 receiving active treatment for cancer or a brain tumor

-Provide a large stuffed monkey that sits in the child’s seat when they can’t go to school, a miniature monkey for the child to keep, backpack, book, journal, disposable camera, and photo album, all to keep the child and their class at school connected

Information and Support

American Cancer Society- 800-227-2345, Nashville chapter- 615-327-0991 www.cancer.org

-Road to Recovery Program- volunteer drivers provide rides for those who do not have access to transportation, not available in all areas

-Look Good…Feel Better for Teens- age 13-17 for boys and girls, helps them cope with how cancer treatment and side effects can change the way they look. Includes tips on skin care, hair, and makeup, plus information about nutrition, exercise, fitness, and teen social issues.

-One free wig per cancer patient

-Search for support groups in your area, access information about cancer and more

American Childhood Cancer Organization (Candlelighters)- www.candlelighters.org

-largest publisher and distributor of free books on childhood cancer

Candlelighters of Middle Tennessee- 615-383-2023, 55 Wyn Oak, Nashville, TN 37205

-Programs and services include Candlelighters publications, support group meetings, teen programs, in-hospital visits, family activities.

Gabe’s Chemo Duck- 615-830-0126 (8am-5pm CST) www.chemoduck.org

-Offers Chemo Duck (play therapy tool), mini-book on how to use the chemo duck as a teaching tool, activity book, and educational DVD

Gilda’s Club Nashville- 615-329-1124, 1707 Division Street, Nashville, TN 37203 www.gildasclubnashville.org

-Free lectures, workshops, classes, support groups, and social activities

SuperSibs- 866-444-SIBS www.supersibs.org

-Information, support, and packages for the siblings (age 4-18) of childhood cancer patients

-On-line information for parents, other family members, teachers, etc.

Medical Expenses

Aubrey Rose Foundation- 513-265-5801 www.aubreyrose.org

-Assistance with outstanding medical bills not covered by insurance

Cancer Care- www.cancercare.org

- Limited financial assistance for homecare, childcare, transportation, medication and co-pays

Co-Pay Relief– www.copays.org

-Provides co-payment assistance to insured Americans who financially and medically qualify

Friends of Man- 303-798-2342 www.friendsofman.org

-On a case-by-case basis for the needy, they provide assistance with prostheses, wheelchairs, and medical equipment

-Applications can only be submitted by referring professional

Needy Meds- www.needymeds.org

-Information on patient assistance programs (medication at low or no cost) and free or low cost clinics, plus the free NeedyMeds Drug Discount card

Partnership for Prescription Assistance- www.pparx.org

-Helps patients without prescription drug coverage get the medications they need

Patient Advocate Foundation- www.patientadvocate.org

-Provides case management services to patients with chronic, life threatening and debilitating illnesses, serves as advocate and liaison

Personalized Patient Web Page

Care Pages- www.carepages.com

-Free patient blog to communicate with friends and family

-Articles about illness, caregiving, stress management, and more

CaringBridge- www.caringbridge.org

- A free way to communicate updates about your loved one’s health concerns to family and friends while saving time and emotional energy. Authors add health updates and photos to their personal page and visitors can leave encouraging comments in the Guest Book

Wigs/Hair pieces

Childhood Leukemia Foundation- Hugs-U-Wear Program www.clf4kids.org/hugs_u_wear.html

-Provides a free custom made, 100% human hair wigs with kid-friendly hats

Hats Off for Cancer- www.hatsoffforcancer.org

-Provides free hats to cancer patients

Heavenly Hats Foundation- www.heavenlyhats.com

-Provides free hats to cancer patients

Locks of Love- www.locksoflove.org 561-833-7332

-Hair prostheses provided to children with permanent or long-term hair loss for free or on a sliding scale according to need

-Synthetic hair pieces available for short-term hair loss or for children under age 6

Where There’s a Need- www.wheretheresaneed.org 866-803-6095

-Provides unique Hair Scarf to girls who experience hair loss

Wigs for Kids- www.wigsforkids.org 440-333-4433

-Provides wigs or cranial prosthesis to children under the age of 18 who have lost their hair as a result of medical treatments or health conditions. Children must come from families that cannot otherwise pay.

Pediatric Cancer Camps and Wish-granting

2010-11-02T08:00:00.000-05:00

This is a very incomplete list of camps and wish-granting organizations. Some are state-specific, some are national. Please comment with any others that you're aware of!

Camps:

BASE Camp- for pediatric patients with cancer, sickle cell anemia, hemophilia, and other rare/orphan hematological diseases and their siblings living in Florida www.basecamp.org

Camp Boggy Creek- for Florida’s seriously ill children www.boggycreek.org

Camp Good Days- located in New York, camp programs and services are free to childhood cancer or sickle cell disease patients and their families from around the country and the world www.campgooddays.org

Camp Mak-a-Dream- located in Montana, camp programs and services are free to childhood cancer patients and their families from around the country www.campdream.org

Camp Quality USA- 14 camps located throughout the US, camp is free to childhood cancer patients (ages vary according to specific camp) www.campqualityusa.org

Children’s Oncology Camping Association International- directory of camps in the US, Canada, and other countries www.cocai.org

Special Love- Located in Virginia, camps for childhood cancer patients and their families, also offer scholarships and emergency financial relief for Virginia residents www.specialove.org

Wishes:

Benefit4Kids- outdoor wish-granting program, national www.benefit4kids.org

Children's Wish Foundation International- grants wishes to children with life-threatening diseases and provides opportunities for families to enjoy themselves away from the hospital environment, national www.childrenswish.org

Make-a-Wish- wish-granting program, national www.wish.org

Pediatric Cancer Resources

2010-10-28T20:12:00.003-05:00

A list of state-specific and national pediatric cancer resources. These are primarily financial assistance-related, unless otherwise specified. There are many more out there so please comment if you're aware of others.

Adam Bullen Memorial Foundation- children and adults with cancer diagnosis in Massachusetts www.adambullen.com

Alex’s Lemonade Stand- information and resources for all cancer patients, financial assistance for patients at certain hospitals www.alexslemonade.org

Andre Sobel River of Life Foundation- assistance for single mothers of childhood cancer patients at certain hospitals, otherwise may be eligible for Every Day Assistance Fund www.andreriveroflife.org

Angel 34- childhood cancer patients, national www.angel34.org

Angel on my Shoulder- unique assistance, camp, and more for cancer patients in WI www.angelonmyshoulder.org

BASE Camp- pediatric patients with cancer, sickle cell anemia, hemophilia, and other rare/orphan hematological diseases living in Florida, hospital lunches, food and financial assistance, milestone parties www.basecamp.org

Bear Necessities Pediatric Cancer Foundation- childhood cancer patients living in or being treated in Illinois www.bearnecessities.org

Brain Tumor Foundation for Children- brain tumor patients at certain hospitals in the south www.braintumorkids.org

Bryan’s Dream- national, brain tumor patients www.bryansdream.org

Cancer Care- patients with cancer, national www.cancercare.org

Cancer Warriors- critically needy childhood cancer patients in Georgia www.cancerwarriors.org

Chai Lifeline- primarily for Jewish patients with cancer, national www.chailifeline,org

Childhood Leukemia Foundation-information and gifts for pediatric cancer patients (any cancer), national www.clf4kids.org

Children’s Cancer Association- childhood cancer patients in Oregon and SW Washington www.joyrx.org

Children’s Cancer Fund of America- childhood cancer patients, national www.ccfoa.org

Children’s Cancer Fund of New Mexico- childhood cancer patients in New Mexico www.ccfnm.org

Children’s Cancer Recovery Foundation- childhood cancer patients, national www.cancerrecovery.org

Children’s Chance- childhood cancer patients in South Carolina www.childrenschance.org

Clayton Dabney Foundation- terminally ill children, national www.claytondabney.org

Cure for Cancers- cancer patients in northern California www.cureforcancers.org

Embrace Kids- childhood cancer or blood disorder patients in New Jersey www.embracekids.org

First Hand Foundation- childhood cancer patients, national www.firsthandfoundation.org

Foundation for Children with Cancer- childhood cancer patients, national www.childrenwithcancer.org

Friends4Michael Foundation- childhood brain tumor patients, national www.friends4michael.org

Friends of Karen- childhood cancer patients in parts of Connecticut, New Jersey, and New York www.friendsofkaren.org

Godstock- chronically ill children in North Carolina www.godstock.org

Have a Heart Children’s Cancer Charity- childhood cancer patients, certain East Coast hospitals and children’s organizations www.haveaheartcharity.org

Hawaii Children’s Cancer Foundation- childhood cancer patients in Hawaii www.hccf.org

Hope Cancer Fund- cancer patients living in California, Colorado, Kansas, Idaho, Indiana, Iowa, Montana, Michigan, Nebraska, and Wyoming www.hopecancerfund.com

Jacob’s Heart Children’s Cancer Support Services- childhood cancer patients living in these California counties: Santa Cruz, Monterey, San Benito and South Santa Clara www.jacobsheart.org

Jake Owen Raborn Foundation- childhood cancer patients, national www.jakesfoundation.org

Jonathan Cancer Fund- childhood cancer patients living in Onondaga County, New York www.jonathancancerfund.org

Kelly Anne Dolan Memorial Fund- terminally, critically, and chronically ill, severely disabled, or seriously injured children living in Pennsylvania, Delaware, and New Jersey www.dolanfund.org

Locks of Love- hair prostheses for childhood cancer patients, national www.locksoflove.org

Melonhead Foundation- childhood cancer patients, national www.melonhead.org

Michael Magro Foundation- childhood cancer patients at Cancer Center for Kids at Winthrop-University Hospital www.michaelmagrofoundation.com

Michael Quinlan Brain Tumor Foundation- brain tumor patients in Kentucky and southern Indiana, educational materials, support groups and counseling, relaxation therapies, financial assistance with medical expenses www.mqbtf.org

Mikey’s Way- childhood cancer patients, distributes toys and handheld electronics at hospitals in New York www.mikeysway.org

Miracles of Mitch Foundation- childhood cancer patients in Minnesota www.miraclesofmitch.org

Mission4Maureen- brain tumor patients, national www.mission4maureen.com

Mission of Hope Cancer Fund- cancer patients living in Michigan www.cancerfund.org

A Mother’s Kiss- childhood cancer patients in Long Island and Metro-New York www.amotherskiss.org

Multi-County Cancer Support Network- cancer patients living in these Tennessee counties: Franklin, Coffee, Moore, Lincoln, Grundy, Marion, Warren, and Bedfordwww.mccsn.org

National Children’s Cancer Society- childhood cancer patients, national www.nationalchildrenscancersociety.com

Nikki Leach Foundation- cancer patients age 16-25, national www.nikkileach.org

No Wooden Nickels- cancer patients in Illinois (hoping to expand by 2012) www.nowoodennickels.org

Oklahoma Brain Tumor Foundation- brain tumor patients in Oklahoma www.okbtf.org

Padres Contra el Cancer (Parents Against Cancer)- Latino childhood cancer patients in southern California www.iamhope.org

Reflections of Grace- national, brain tumor patients www.reflectionsofgrace.org

Rise Above It Foundation- patients age 15-39 undergoing or pursuing clinical trial options, national www.raibenefit.org

The Sarah Grace Foundation for Children with Cancer- patients in the Pediatric Oncology Departments of Schneider Children's Hospital, Winthrop, Columbia, Montefiore, and Nassau University Medical Center www.thesarahgracefoundation.org

Smiles for Sophie Forever- national, brain tumor patients www.smilesforsophieforever.org

Sparrow Clubs USA- any child with a major illness or significant disability with a compelling practical or financial need, national www.sparrowclubs.org

Szott Foundation- childhood cancer patients in the Twin Cities, Minnesota www.szottfoundation.org

The Tomorrow Fund- childhood cancer patients treated at The Tomorrow Fund Clinic Pediatric Hematology/Oncology Center at Hasbro Children’s Hospital www.tomorrowfund.org

United Cancer Assistance Network- support and assistance to cancer patients residing in southeast Missouri and northeast Arkansas www.ucanpb.com

Wigs for Kids- hair prostheses for low-income childhood cancer patients, national www.wigsforkids.org

Zichron Shlome Refuah Fund- Assists Jewish children or adults with cancer with a variety of assistance, national www.zsrf.org

99 Balloons

2010-10-28T14:20:00.000-05:00

A family's experience of Trisomy 18. Very moving...keep the kleenex handy.

Thoughts

2010-10-14T20:31:00.002-05:00

The other day the mother of a patient told me I've done a 1000 times more in my short time there than my predecessor ever did. That made me feel great! But also sad that some of my patients were underserved before.

Tomorrow my work "honeymoon" ends. I have my first day call. My first night call is next Thursday. Thankfully, my first weekend call isn't until January. I told my boss I've really enjoyed not dealing with on-call for the past 5+ months. No keeping my schedule open, no stress, no on-call nerves. It's been beautiful. Still, this is part of the job so I will suck it up and do it. One day and one night call a month and 2 or 3 weekends a year isn't that bad. Is it?

I've been hard at work at compiling a resource list for cancer patients. At first it was only resources my patients can use. Then I realized I was looking up organizations a few times after parents would ask me about them so this list includes everything, all states. If I hear about it, it's going on the list. Once it's done, I'll post a version of it here so be on the look out!

Communication Shutdown

2010-10-06T09:25:00.002-05:00

I'm so proud of Justin Biehl! I used to babysit him waaaay back in the day. Now he is all grown up and truly making a difference. I can't help but share his message with you all and offer you an opportunity to help.

Facebook and Twitter addicts sign up to Shutdown for one day in support of people with autism

Justin works at Giant Steps, a therapeutic day school for children with Autism in Lisle, IL. They are one of three organizations in the US who have been selected to receive a portion of the funding under this global fundraising campaign. For only $5, you can participate and get your charity app (CHAPP) that serves as a badge of solidarity for those affected by Austism.

• Autism affects approximately 1 in 100 children and is a lifelong condition that impacts every part of a person’s life
• People from all nationalities and cultural, religious and social backgrounds can have autism
• While there is currently no ‘cure’ for autism, there are a number of interventions that promote learning and enable development to occur. The sooner interventions start, the sooner individuals and families can experience the benefits.

Can you get by without Facebook or Twitter, just for one day?

Social communication is one of the biggest challenges for people with autism. But on November 1, the world will have some idea of what this is like.

Today more than 40 autism charities and a team of celebrities worldwide are joining forces to launch a global campaign challenging the world’s 4.5 billion social media users to shutdown their networks just for one day.

The Communication Shutdown campaign encourages Facebook and Twitter users to make a donation and receive a charity app or (CHAPP) that will signal their support and intention to boycott their accounts on November 1.

For a $5 donation, the CHAPP will connect with the user’s Facebook and Twitter accounts by placing a shutdown icon over their profile picture.

From today the Communication Shutdown CHAPP will be available on the campaign website www.communicationshutdown.org. The site will also host a global mosaic where supporters can see their profile pic next to celebrities who have signed up.

Even celebs want to get involved with famous names including Holly Robinson Peete, supermodel Miranda Kerr, and Temple Grandin ready to shutdown.

Get your CHAPP today, then forward this message onto ten people and become part of the largest, global social experiment ever created.

Only $5 to participate and help? I think we can all spare that much. Not only will this directly help children with autism, it will help us understand, to a small degree, their struggle with social communication. I've been blessed to know several people and children with autism and welcome any way I can better understand their world. I have my CHAPP. Do you?

Cancer Bloggers

2010-10-04T13:17:00.000-05:00

I've recently come across two bloggers that have recent cancer diagnoses. Both are worth following.

Amy at New Nostalgia is a longtime blogger and disclosed her breast cancer diagnosis a month ago. She writes honestly about her fears and her struggles, but also the blessings, the ways she has seen God at work during this time. She invited her readers to join her CarePage but still posts regularly on her blog. Recently she shaved her hair off. Her reaction, her family's response, and her kids' decorations on her newly shorn head absolutely blew me away. Go visit Amy and leave an encouraging comment.

Libby at Don't Waste Your Cancer is 26 years old, a young mother and wife, and was diagnosed with lymphoma in July. She just grabs your heart! Read her account of her current emotional state. Be inspired by her and her husband's decision to embrace this new path in their relationship. I know I am.

Blogging Business

2010-09-27T08:00:00.000-05:00

You may have noticed I'm not posting as frequently as I did before. There's a few reasons behind that.

First, my new employer has much stricter guidelines regarding social media. I really, really don't want to share a patient story that could be in any way tracked back to me or to my work. While I have some great stories I'd like to share, I'm just not comfortable quite yet. I'm hoping the longer I work there and the more pains I take to remain confidential/anonymous, the more open I'll be able to be.

Second, I don't have as much time. I have another blog and I've been doing more with that since friends and family like to check up on my new life. Also, when I'm writing there, I can write about whatever I want and not worry about breaching confidentiality! There's just a lot going on here and I have to be more choosy on how I spend my time.

Third, it used to be that I just had a hospice and bereavement scope. Now I have a pediatric, neuro-oncology, sickle cell, hematology, etc. scope. It's so broad and I'm not sure what you all want to hear about! There is so much I could write about for any one of those categories. As I've been learning at work, I've been trying to jot down notes of what might be useful to my Confessions following. If there's anything you'd like to know more about, please let me know.

Fourth, I don't want to lose sight of the fact that I am indeed a social worker! I can't just write about sickle cell and death and bereavement work. I need to write more about what it means to be a social worker and what my role is within my division at work. Since I'm still learning what that entails, you can expect that I'll be posting about it at some point.

Fifth, I think that I'll continue to post once or twice a week, possibly more depending on what I have going on and what topics are of note. I check the email connected to this blog about once a week so if I don't respond right away, please be patient. I'm sure the balance between work, play, and blogging will arrive sooner or later.

Thanks as always for reading!

Emergency Plan

2010-09-23T08:00:00.001-05:00

When your child has a chronic or terminal illness, it’s important to have a back-up plan in case your child requires an unplanned trip to clinic or hospitalization. Planning ahead will make these times less stressful.

Keep the hospital or clinic phone number near your home phone for easy access. Program the phone numbers into your cell phone.

Let your family and friends know about your child’s condition and what they can do to help. If you have other children, identify who else is available to take them to school/daycare and pick them up in case a clinic visit runs longer than expected. Also identify who is able to watch them during the day or overnight if your child is hospitalized.

Inform your employer of your child’s condition. You may need to miss work at times due to your child’s healthcare needs. You may need to utilize benefits through the Family Medical Leave Act; your human resources representative can tell you more about your employer’s policy regarding FMLA.

Talk to your child’s school or daycare about his or her condition. Make sure that they understand what your child needs to manage the illness and provide a plan of action for emergency situations. Request that the teacher stay in contact with your child during hospitalizations and absences. Talk to the school nurse about medication schedules and coping strategies.

Keep a bag packed in case of hospitalization. Keep it in a place that is easily accessible in your home. This way you can simply grab it and go.

Hospital Bag Checklist

Contact list (include family and friends that want to be informed or who may be tending to your other children or household needs)
Comfortable clothes (parent and child)
Pajamas (parent and child)
Underwear/socks (parent and child)
Toiletries
Deodorant
Shampoo/soap
Hairbrush or comb
Contacts/glasses
Snacks/ food items/money for cafeteria (patients receive 3 meals a day; one free guest tray is provided per room through Katie’s Helping Hands. Parents will need to bring their own food for other meals or buy food from the cafeteria on the 2^nd floor. Snacks are also available in the Ronald McDonald Hospitality room on the 5^th floor.)
Books/magazines
Toys/games

Anything else you would add to this list? You have permission to make copies of this handout but please credit Confessions of a Young(Looking) Social Worker as your source.

Sickle Cell and SSI

2010-09-20T08:00:00.000-05:00

Many individuals with sickle cell disease do not show obvious signs of disability. Even though it is a chronic illness, it may not be easy to obtain financial benefits. Eligibility for Supplemental Security Income (SSI) is based on the extent of the disability as well as income eligibility. You must qualify in both categories to be determined eligible, which can make it difficult for individuals with Sickle Cell disease to qualify for SSI. One of the first questions parents ask me when their baby has been diagnosed with sickle cell is whether they can apply for SSI. The answer is generally no because most babies experience few complications. As the child gets older, this, of course, could change. SSI looks at a comprehensive picture of the individual’s condition, including the number and dates of hospital admissions, emergency room visits, acute visits, organic and physical dysfunctions, and the blood count, as well as the need for blood transfusions.

The information below is straight from the SSI website:

Hematological Disorder Guidelines

A. Sickle cell disease. Refers to a chronic hemolytic anemia associated with sickle cell hemoglobin, either homozygous or in combination with thalassemia or with another abnormal hemoglobin (such as C or F).

Appropriate hematologic evidence for sickle cell disease, such as hemoglobin electrophoresis must be included. Vaso-occlusive, hemolytic, or aplastic episodes should be documented by description of severity, frequency, and duration.

Disability due to sickle cell disease may be solely the result of a severe, persistent anemia or may be due to the combination of chronic progressive or episodic manifestations in the presence of a less severe anemia.

Major visceral episodes causing disability include meningitis, osteomyelitis, pulmonary infections or infarctions, cerebrovascular accidents, congestive heart failure, genito-urinary involvement, etc.

107.05 Sickle cell disease. With:

A. Recent, recurrent severe vaso-occlusive crises (musculoskeletal, vertebral, abdominal); or

B. A major visceral complication in the 12 months prior to application; or

C. A hyperhemolytic or aplastic crisis within 12 months prior to application; or

D. Chronic, severe anemia with persistence of hermatocrit of 26 percent or less; or

E. Congestive heart failure, cerebrovascular damage, or emotional disorder as described under the criteria in 104.02, 111.00ff, or 112.00ff.

Invisible Illness

2010-09-09T21:26:00.003-05:00

September 13-19 marks National Invisible Chronic Illness Awareness week. This year's theme is "Each One Can Reach One." You can participate wherever you are by leaving a sticky note with an encouraging message. Just add invisibleillness.com at the bottom of your note so that the finder can go to the website and get ever more encouragement. Notes have been found everywhere from public restrooms to the bulletin board at work. The goal is to "remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness."

The highlight of the week is a 5 day virtual conference and it's free! There are 4 panelists every day and there will be a chance to call in with your questions.

Spend some time perusing the site for helpful articles for those living with chronic illnesses, like what to do if a friend thinks you're faking your illness or dealing with aggravations your illness creates. This is a great resource for anyone with a chronic illness. It is also great for those without chronic illness to see life from someone else's point of view and to be more understanding and compassionate.

Pinch me!

2010-09-06T08:00:00.000-05:00

Are you ever going about your daily routine and the magnitude of what you do suddenly hits you? You see yourself in a particular interaction and you have to keep yourself from grinning because you get paid to do this!

This continues to happen to me on a weekly basis. I'm into my third month now and I still love it. (Talk to me again next month when on-call starts. The rose-colored glasses might start to fade by then! But even with this, compared to the amount of on-call I did before and the compensation I'll receive now, it seems doable.)

My latest pinch me moments:
-helping a teen with sickle cell and severe pain develop coping skills as another way of dealing with his pain besides medication
-meeting with the grandparents of a patient with newly diagnosed brain cancer
-explaining how SSI works when it comes to sickle cell (post to come soon)
-letting financially strapped families know about the wonderful resources available to them (brain tumor patients)
-interacting with the cutest kids
-a father of a patient (not mine) told me that the oncology wing was staffed by the most cheerful and professional people and this has made all the difference for him. Incidentally, he was a pretty cheerful person himself!

Sickle Cell Awareness Month

2010-09-04T09:00:00.001-05:00

September marks the 35th Sickle Cell Awareness month, since starting in 1975. It was recognized on a national level in 1983 when the House of Representatives passed the resolution.

I've only been working with sickle cell patients for a couple of months but that's long enough to know that so much more education is necessary. Education for the public, but also education for the patients and their families.

Sickle cell disease is an inherited blood disorder that affects red blood cells. Basically, the red blood cells don't get enough oxygen, which causes them to become sickle (or crescent) shaped. In sickle cell disease, red blood cells contain mostly hemoglobin* S, an abnormal type of hemoglobin. This makes it difficult for them to move through blood vessels and they can get stuck. This then causes less blood flow in that part of the body, which causes damage. This typically results in pain but there is a host of complications associated with sickle cell, including acute chest syndrome and stroke.

Thanks to newborn screenings, sickle cell is detected at birth but babies must have another positive screening before they are officially diagnosed. This is a chronic illness without a cure. If the child has a full-sibling, they can be HLA-typed and if there's a match, they may be eligible for a transplant. Otherwise, patients take penicillin for the first 5 years of life to protect from from infection. If a child under 5 has a fever, they are typically admitted to the hospital because of the complications related to sickle cell. If a child has sickle cell disease and starts having more complications, they may start taking hydroxyurea or get blood transfusions. It's not easy to live with a chronic illness but these medications vastly improve quality of life and can prevent complications from occurring.

If you carry the trait and your partner carries the trait, you have a 25% chance of passing sickle cell disease on to your child and a 50% of passing the trait on. Genetic counseling is important before SC patients become sexually active and/or are considering reproduction.

Other measures to improve health are staying hydrated and avoiding cold temperatures, as well as maintaining a good diet.

As the following PSAs show, sickle cell affects everyone. It is not an "African American disease" as is widely believed. Every race, every background, man or woman.

Please spread awareness of sickle cell disease in your community!

A Hero Inside You

2010-09-03T20:53:00.003-05:00

Fair warning: you may get a little teary-eyed watching this video.

Karl Dimachki, a 31-year-old Australian construction worker was diagnosed with tongue cancer about a year and a half ago. He had his lymph nodes and half of his tongue removed. He was told he wouldn't be able to talk properly and wouldn't be able to sing ever again. He was told he likely wouldn't see any progress for 3 or 4 years, optimistically speaking. Dimachki didn't let that stop him. This past Tuesday night, Dimachki tried out for the Australian version of "The X Factor." His version of Lionel Ritchie's "Hello" brought judges and audience alike to tears.

I love his intro quote: "I'm just here to prove a point: If you have a dream, go on and do it, 'cause God will always put a hero inside you."

His story is inspirational to be sure. Will he make it far in the competition? I doubt it but he deserves the opportunity to reach for his dream. Who knows? He's come this far. He could prove judge Kyle Sandilands- and me- wrong.

Top 50 Blogs for Social Work Professionals

2010-08-27T21:21:00.003-05:00

I found out today that Confessions of a Young (Looking) Social Worker was listed in MSWPrograms.com's Top 50 Blogs for Social Work Professionals. MSWPrograms.com developed the list to provide resources to current MSW students, as well as first-hand accounts of those of us in the trenches. I'm #31! Which I just realized is ironically close to my age. In any case, I am so honored to be featured amongst my peers. There are a number of notable blogs on the list that I already follow and a few more that I'm eager to start reading. Please do yourself a favor by taking time to read the descriptions and learning about these wonderful social work bloggers.

If this is your first time browsing here, allow me to give you a brief background. I was a hospice social worker and child/teen bereavement specialist for 5 years. I loved it! I started this blog about 4 years ago, originally so friends and family could learn about my work and play. Then, a couple of years ago, Christian Sinclair at Pallimed.org discovered I was going to take my patient skydiving and this blog hasn't been the same since. I realized that more people within the health care and social work communities were starting to take notice and began the process of making this blog purely professional.

This brings us back to present day. A few months ago I moved to Nashville on a leap of faith and landed my dream job. I'm a pediatric social worker working with children who have brain tumors, Sickle Cell disease, and other hematological disorders. To say that I'm in the right place is an understatement. I still have close ties to the hospice world though. You can expect to read a mishmash of pediatric and hospice-related posts.

So please, take a moment to peruse and familiarize yourself with this young (looking) social worker. Become a follower so you can stay tuned with my latest post. And please offer feedback because the beauty of any blog is the opportunity to learn from one another.

Thanks for stopping by!

Flashback

2010-08-26T20:23:00.003-05:00

Typically fieldwork placements are designed to help a future social worker experience an aspect of the field outside of their specialization. Since I applied to grad school knowing I wanted to focus on health care, I assumed I'd be placed in a school. However, since I'd worked in residential care during my senior year of college, they must have thought I'd had enough. (This is also, incidentally, the only reason I believe I got into my long-shot school.)

I was placed at the local county health department in their pre-natal and family planning clinics. Before I could start, my supervisor hauled me in to make sure I would be OK with doing options counseling. Some people feel so strongly about the issue that they would try to sway the client in one direction or another, which is the opposite of options counseling. I'm a fairly non-judgmental person and I have fully grasped that what's right for me might be wrong for you. I knew that I could be non-biased when it came to options counseling. My supervisor was appeased and I was allowed to start my placement. I learned a lot that year. I can hold my own in any conversation about pregnancy and birth control- a plus when it comes to my pregnant and married friends. At the top of list: what bad supervision looks like. While I met some great people and feel like I did make a difference with some of my clients, especially the girls I followed in the Teen Parent program, I walked away knowing that it wasn't for me. I was resolute in my desire to be a medical social worker and pressed on toward my goal to work with children with cancer. Seven years later, that dream came true.

What is interesting in all of this is that your fieldwork experience can show up in your present workplace.

A 15 yo girl with Sickle Cell came to clinic. I met with her, did a basic assessment, and began establishing rapport. She's a delightful girl and hopes to be a Sickle Cell doctor someday. I moved on to see some other kids at clinic when I received a page. The 15 yo girl had a positive pregnancy test. And so I went back to the exam room and sat with her.

Tears silently sliding down her face, nose running, vacant expression. Dazed. Shocked.

Slowly I was able to learn the details. Slowly I was able to help her decide who she would tell and when. Slowly I presented the options to her. Then I let her know she didn't need to make a decision today. Yet, some changes would be made. In case she decided to continue with the pregnancy, she needed to stop taking her hydroxyurea. If she decided to continue with the pregnancy, she would be considered high-risk and would need to see an ob/gyn as soon as possible.

I wondered what she would decide. She would need to think about how a baby would impact her life. Who would watch him or her while she was at school? Would the father contribute financially? What about her career goals? Maybe adoption would be a better option. There are so many more options with adoption now- open, closed. She could still be a part of the child's life if she wanted to be. How would it feel to watch someone else raise your child? Grateful, perhaps, but maybe sometimes jealous or regretful? Or perhaps she would decide to terminate the pregnancy. It was early enough that no one at school would ever know. She could graduate, go to college, medical school, whatever she wanted. Only, she would still know. Would she feel guilty? Would she wonder about this little one and who he or she would have grown up to be?

It turns out I was the perfect social worker for this girl. My options counseling training came right back to me, as if I'd been in the health department the day before. I can't say what she decided to do because that's not really the point. I only know that we can't escape our backgrounds or training. And while I never expected my time in the health department to make a big difference in my professional repertoire, today it did.

Documentation

2010-08-24T21:40:00.004-05:00

It's strange to say this but until this new job, I've never had supervision regarding my documentation. Whether it was fieldwork placements or my hospice job, I've never received feedback about my notes, other than that they were good, great, or the best they've ever read. That could sound like bragging but really I'm just confident in my writing and documentation skills. Still, there's always room to improve.

Now, in a new place, there's a new style. It was an adjustment to figure out a format that worked for me. I looked at old psychosocial templates and reviewed the notes of some other social workers and finally came up with something that works for me. After I finish a note, I save it as a draft, print it out, and then wait for my supervisor to review it before saving it to the chart. This has been going on for about 5 or 6 weeks. I've really appreciated the constructive criticism I've received, especially since it's the first time someone has critically reviewed my documentation. However, I'm ready to start saving notes directly to the chart!

When I met with my supervisor this week, she said she didn't think she'd be reviewing my documentation for much longer! She said I was able to adjust really quickly to this workplace's style and I've been able to organize my notes in a format that's easy to read and concise. She might have also said something along the lines of using my format to create a template (!) but I still had the words "I won't be reviewing this much longer" ringing in my ears. What amazing feedback! It confirms again that this is the right place for me. Now if I could only find time to do all my charting...

Griefbursts

2010-08-19T21:13:00.002-05:00

Some of my blogging buddies have explored the topic of grief in recent weeks. These bloggers are not a part of the palliative care or hospice community but I was struck by their words. I think each post is worth reading and you just might enjoy exploring the rest of their writing.

Gberger: First, I must say that Karen has been such a source of encouragement to me since I found her blog this past spring. She is a faithful commenter on this blog and has cheered me as I've started my new job. Her beautiful daughter Katie died 3 years ago this past week. Her continued exploration of loss and openness to growing and giving back is inspiring. This account of her AHA moment is not to be missed.
Giving Up on Perfect: After losing a loved one, Mary polled her readers on how to help a friend who's lost a loved one and then featured the helpful responses. You can spot my contributions, of course, but that's not why I'm highlighting this post!
Natalie Lloyd: Natalie reminisces about blackberry summers and touchingly honors her granny. "I think people we love, those who've gone on ahead, are thinking about us, celebrating over us, praying for us. I wonder if they get to catch glimpses of what we're into down here. Sometimes I like to picture Granny whooping it up somewhere on a back-porch in Glory, clapping for me and shouting, 'That's my girl!'"
Rachel Held Evans: I love Rachel's approach to faith and doubt. The recent loss of a family friend led to today's reflection: Doubt and the Ritual of Grief. "What I loved about the rituals of grief—the viewing, the flowers, the stories, the songs, the laughter, the sobbing, the burial—was that they forced me to keep moving, to avoid getting stuck in a place of despair...I may simply be “going through the motions,” but at least I’m moving."

Grief demands a response

2010-08-19T20:46:00.002-05:00

There's a fascinating article in the New York Times titled Coping with Crises Close to Someone Else's Heart, which examines how friends, family, and the community at large respond to trauma. It is a common, while experiencing loss, illness, or difficulty, for friends and even family to fall away. Sometimes your life becomes myopically focused on the tragedy before you; you no longer have time or energy to devote to the people around you and relationships may drift away. Other times, people are unable to be near your pain out of fear that similar circumstances will befall them or because they are emotionally incapable. Maybe they want to help but don't know how or they don't want to say the wrong thing so they don't call or visit anymore. Sometimes it is intentional and others not.

For the most part, we were blessed with support and love; friends ran errands for us, delivered meals, sat in hospital waiting rooms, walked, talked and cried with us. But a couple of friends disappeared entirely. During the year we spent in eating-disorder hell, they called once or twice but otherwise behaved as though we had been transported to Mongolia with no telephones or e-mail...Given our preoccupation with our daughter’s recovery and my husband’s mother’s illness, we were no doubt lousy company. Maybe we’d somehow offended our friends. Or maybe they were just sick of the disasters that now consumed our lives; just because we were stuck with them didn’t mean our friends had to go there, too.

The author examines several common responses to someone else's trauma. As you read through, you may be surprised to self-identify with the responses. It's not enough to consider how other people have abandoned you in your time of need without examining if you have acted in the same way. Feeling grateful because it didn't happen to you and then guilty? I've been there. I'm sure we've all said the wrong thing at a funeral at some point. Before I experienced deep loss, I'm sure at some point I told people their loved one was in a better place. Now, after experiencing loss, I know that it is fine for me to say that my loved one is in a better place. But if anyone else tells me that, I am liable to smack them.

The latter part of the article focuses on "pseudo-care," in which help is offered but never followed up on. The classic "call me if there's anything I can do" when most people are too exhausted to think about what you could do or to even remember to call. While an expert dismisses telling someone you'll pray for them as ineffectual, I do believe in the power of prayer. Perhaps it would be more appropriate to pray for the person in the moment, continue praying for them throughout the weeks ahead, but also do something tangible like a load of laundry or running errands.

This may be the article's biggest point: "True empathy inspires what sociologists call instrumental aid. “There are any number of tasks to be done, and they’re as personal as your thumbprint,” Dr. Rainer said. If you really want to help a family in crisis, offer to do something specific: drive the carpool, weed the garden, bring a meal, do the laundry, go for a walk."

I'll never forget the friend who left a bouquet of flowers outside my apartment with a card the day I returned home from my grandma's funeral. Or the girls I mentored in youth group who dropped off chicken quesadillas and a salad while my great-aunt was declining. (The fact that these teen girls thought of this on their own and followed through was astounding to me!) The cards, the emails, the friends who dragged me out to dinner when I was coping with my grief by becoming a hermit...priceless. I strive to remember these blessings more than the friends and family who dropped away.

How have your loved ones responded to times of difficulty? What do you do to care for others? Does this apply to your professional world at all?

Hospice Social Work Blog

2010-08-15T16:07:00.002-05:00

There's another hospice social work blogger in town. She can be found over at Social Work Helps. She appears to work at a rural hospice and is also getting her Masters in Social Work right now. FYI, you can work as a hospice social worker with just your BSW. All this keeps her busy so she only posts a couple of times a month. Still, I'm sure she would appreciate support from the Palliative and Hospice blogging community.

In one of her first posts, she notes: "there are many things that we can do to prepare ourselves so that the end of our lives are as non-stressful as possible. People on their deathbed shouldn’t have to worry about Medicaid applications. They shouldn’t have to worry about paying for a Notary or appointing a power of attorney. They should all be able to focus their energy on their family, preparing for the next life, and dying peacefully, pain-free, and worry-free. It really is important to figure those things out now, so that we have the time and energy later in life to focus on what really matters at that time." A great observation for someone who was only a month in to the job!

And social workers everywhere, regardless of specialty, will appreciate her response to people who want her to "fix" patients.

Be sure to check her out and leave a comment of support!

Office Politics

2010-08-12T22:07:00.002-05:00

New jobs come with clean slates. However, it doesn't take long for some scuffs to appear. I have thoroughly enjoyed getting to know my co-workers. I work with a great bunch of people and, so far, really get along with everyone. I'm sure I will continue to get along with everyone- that tends to be my nature. Of course, as you're getting to know people, you can't help but learn about who said what, what the cliques are, and find out the latest drama. It's been educational. That said, I don't want any of the office politics to color how I view people or the organization I work for or my patients. I'm keeping the rose-colored glasses on for now.

I think it's possible to affirm where people are coming from without letting affect me and my work. I learned that lesson well when co-workers would start gripe sessions after certain meetings. I realized that I could sit and complain with them and generally feel worse afterward because nothing would change and I would just get angrier. Or I could listen, try to redirect the conversation, and focus on the positive. And when that failed, I just walked away. It definitely helped my attitude stay above board.

What about you? How do you stay above office politics? How long did your rose-colored glasses stay on?

Jargon

2010-08-11T20:35:00.002-05:00

In a medical setting, many, many terms and acronyms are bandied about as if everyone should understand. There's the easier to figure out ones: afebrile, emesis. There's the tougher ones: PCP, SI. There's the ones you know if you're a doctor: neutropenic, BUN. I could go on and on. As I've adjusted to my job, I've also adjusted to the medical terminology. There were days I felt as lost as the parents! The residents always graciously broke it down into lay terms when a parent would ask or if they happened to notice the glazed over eyes. I know for the sake of rounds, it's easier to use initials and the more "doctorly" jargon. With this new crop of residents (which is a whole other issue- parents adjusting to new doctors every month!), there's been a recurring joke about the jargon. They like to tell some parents that by the time their child's cancer treatment is through, they'll have an unofficial oncology degree. I guess it's true but I'm sure every parent thinks, "that's not the kind of degree I wanted."

Palliative Care Grand Rounds 2.8

2010-08-04T06:00:00.008-05:00

Thanks for visiting me on this most auspicious PCGR day. Since I moved to a new state and started a new job a couple of months ago, I didn't have time to come up with a fun hosting concept the way I did in September. Nonetheless, I hope you'll enjoy these heartwarming, thought-provoking, and ever interesting posts. These blogs will most likely be new to you, with a few staples thrown in. Be sure to comment on the ones you like or have a response to. We bloggers love feedback!

Hold My Hand follows the life and times of a nursing home social worker. I appreciate that HMH shares the story and reflects on her own actions and reactions. She writes a moving account in The Language of Love about a care conference with a resident and the resident's daughter. Don't be surprised if you find yourself looking for kleenex by the end.

I'm fascinated by OrthoOnc's use of technology! First, he test-drives the iPad in the operating room. Then how the iPhone's FaceTime could be used for telemedicine.

A primary care physician is the brains behind Musings of a Distractible Mind. Dr. Rob's posts are sometimes funny, sometimes serious, and always worth reading. A Letter to Patients with Chronic Disease explores how to improve the patient/doctor relationship and has generated follow-up posts and lots of comments. If that's not enough to make you a subscriber, then read Failure, an examination of whether a patient's death or suffering equals a doctor's failure.

Pallimed, as always, has a wealth of possible PCGR contributions. New Pallimed contributor Holly Yang discusses findings in the Quality of Death report, which ranks end-of-life care from 40 countries. She also wisely links to one of my favorite Pallimed posts from July: the Life Before Death website.

You can't talk about Pallimed without mentioning Pallimed: Arts. A perfect blend of my interests! I was struck by this profile on musician Fred Hersch. Diagnosed with HIV at age 29, he was recently interviewed by NPR's All Things Considered. He notes, ""For at least the first number of albums I made on my own, I really had this kind of dramatic feeling like this is going to be my last statement and I just wanted to create enough of a body of work that if I died I might somehow be remembered." How's that for living as if you were dying?

One of my favorite recent finds is Dr. David's Blog, the musings of a pediatric oncologist. Absolute must-reads: an ethical dilemma ("Who gets to decide if the 5% chance of a cure is worth the risk? Is this chance of success so small as to qualify as futile?") and tackling the hardest question: "How much time do I have left?"

Taking the scenic drive's author is a PICU RN who plans to go to medical school. Read through her ethical dilemmas and ponder what you would advise.

Her profile says she's a family doctor, mother of 3, and relearning life without her son Henry, who died about a year and a half ago. Her posts about grief are raw and honest. Her posts about patients are insightful and compassionate.

An ER nurse writes about the difficulty in have palliative care conversations in the emergency room. This also leads to reflection on the loss of a friend and the conversations she had with his family.

A Memorial Sloan-Kettering Cancer Center intern reflects on this article: Americans are treated, and overtreated, to death. Conveying that hospice or palliative care is not "giving up hope" may be one of our biggest mountains to climb.

Sarah is not a palliative care or hospice blogger. Her mom died 3 years ago. She just found out the FDA revoked her mom's main chemo drug "for not helping patients." Her response, her pain, her anger is not for the faint-hearted. This is the aftermath of grief.

GeriPal draws attention to the Atul Gawande article Letting Go: What should medicine do when it can't save your life? and then offers this response. Take the time to read Gawande's article first. Also of note, Why not palliative oncology?

[Ed. note: A Pastor's Cancer Diary also offers worthy commentary on the aforementioned Atul Gawande article.]

As I've compiled the posts for PCGR this month, it seems an unintentional theme has emerged. We need more conversation. More conversation about treatment options and when it's time to consider palliative care and hospice. More conversation about our wishes during treatment and at the end of life. More conversation about how loss affects us. I can only hope that PCGR enables us all to take time for these conversations, which inevitably will help us do our jobs better. I know this community has helped me. May it also be a blessing to you.

PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.

Let me be your punching bag

2010-08-03T19:56:00.002-05:00

Let's say there was a family. Their child has brain cancer that has metastasized. Instead of accepting that the disease has progressed, they look for someone, anyone to blame. They ooze anger. The doctor didn't pay attention to the symptoms. Their appointments weren't booked soon enough. Their insurance won't cover certain procedures. And you can understand. Because in this instance, we might be looking at controlling, not curing, the disease. So when the parents yell, you get it. This is a scary place. Maybe there will be a way to hold the cancer off a little while longer. Maybe you won't have to discuss palliative care or hospice with this family that wants to hold on to their child. But maybe you will. Even though your background prepares you for these conversations on an intellectual level, you will likely never be prepared on an emotional level.

How do you comfort a family that may lose their child? You listen. You let them express their anger. Their fear. The unfathomable grief. You don't defend anyone's actions or delays or the injustices of life. You apologize when you can. You advocate when you can. You listen. You accept. You are the middleman. You are the punching bag.

When they have vented, when they are spent, they will look at you and say thank you for listening. And maybe apologize for some of their words. They don't need to apologize. You'll look at them with compassion and simply say, "that's what I'm here for."

Busy

2010-07-27T20:38:00.004-05:00

Today was a magical day. After morning rounds, I had Sickle Cell clinic and a few in-patients. I was running around clinic, starting with one patient and then getting tagged to see the next, in the meantime fielding calls from the in-patient side. By afternoon, I hadn't eaten lunch and I could hardly remember who I'd charted on or what I'd done that morning. I didn't care. It felt amazing to be listening, helping, and learning about the families I'll be working with for however long. I still have so much to learn but I've got the basics down. I can honestly say I love my job!

I know in a few weeks, I'll be irritable about not having time to eat or chart. Right now, it feels good to be used by staff. I think I'm a bit more proactive than my predecessor but I realize I'm still figuring out the ebb and flow of my service so perhaps I have the time to be more proactive. In any case, I've been getting good feedback from everyone. The next few days promise to be equally busy. And you know? I'm looking forward to it.

Specialty

2010-07-26T21:27:00.002-05:00

There have been a couple of cases of consanguinity today. Yes, I'm talking about patient's parents being related to each other. When I read the history of a second case and saw the parents were first cousins, I couldn't help but wonder about the odds. Then my officemate said maybe consanguinity would be my specialty, the way she's the go-to person for transportation and the other social worker in our division is the go-to for sperm-banking. I told her it would be nice to have a specialty but I would prefer not to be known as the consanguinity expert. But seriously, what are the odds of having two cases so close together?

A Different Kind of Bucket List

2010-07-20T21:50:00.002-05:00

Kristen D'Antonio was diagnosed with a rare genetic illness called Neurofibromatosis type 2 three years ago, a disorder of the central nervous system that forms tumors on the nerves that will eventually lead to deafness. Music is her life and so she has put together a Bucket List of artists she would like to see in concert before she loses her hearing. You can read more here and watch the video below for the whole story. I first learned of Kristen via newspaper article and was impressed by her effort to make the most of her hearing while she has it. It also makes me wonder if there are other similar Bucket Lists out there, related to the loss of an organ or a chronic illness.

More than Mom and Dad

2010-07-15T20:43:00.003-05:00

My division started doing walking rounds about a week after I started working. Also known as family-centered rounds, goals include improving communication, allowing opportunities for education, involving family in decision-making, and improving satisfaction. Although some days take longer depending on who's the attending physician, I feel it's of great benefit to both staff and families. There are 3 of us social workers on the division and this increases our profile among the residents, fellow, and attending. It also helps us get involved with families more quickly, as well as easily check in with them once a relationship has been established. Some staff are still getting used to the process but everyone seems to be on board, which once again highlight's my organization's commitment to taking the best care of patients that we can.

One thing I've noticed during rounds is that patient's parents are often referred to by the residents as Mom, Dad, Grandma. Not by their name. Sometimes patients and parents don't participate in walking rounds, in which case, it doesn't seem like a big deal to identify people by their roles. But when we're in the room or the parent is in the hallway, it seems strange to say, "Mom, have you noticed any changes?" vs. "Mary, have you noticed any changes?" This is disconcerting to me.

Time on a children's cancer wing is not time that parents ever imagined spending. So much changes for them so quickly. Concerns about finances, work, other children must all be addressed. The cancer wing may become a temporary new home. To only identify someone by their role seems to strip them of their identity. Parents are still people. In spite of the serious nature that brings them into walking rounds, they deserve to be recognized as the whole of who they are. I don't expect everyone to get to know each other intimately. Our roles and disease process/treatment don't always allow that. But remembering a name seems doable. And I'm going to intentionally do so.

(I realize that parents themselves might not mind or even notice this distinction. I also remember reading a Dear Abby column in which someone complained that the doctor's office or school secretary referred to her only as Mom, instead of Mrs. X or Mary. She wanted to note she was more than a mom.)

Clinic

2010-07-13T22:01:00.002-05:00

I shadowed a nurse during one of my clinics today. I can't tell you how great it felt! I was bone tired by the time I left, a good sign in my book. I was able to help a few patients and/or their families with concrete needs and emotional support. I was able to meet a lot of the patients that I will be working with for the next however many years. How cool to see a baby and know that I will be walking alongside him or her and watch as they manage their illness and grow! Clinic is such a different routine from the hospice world. I hope to be more present in my clinics than the person I replaced was able to do. The good news is that both services I cover want to grow enough in order to have their own full-time social worker. It is exciting to be a part of that journey and to shape these programs. I have to figure out my routine and how I will divide my time between clinic and in-patient. It's starting to come along.

Palliative Care Grand Rounds 2.7

2010-07-07T21:45:00.002-05:00

PCGR are up at GeriPal and listed in a most unique way. Don't miss out on these clever descriptions! And then check back here the first Wednesday in August when I play hostess. Feel free to comment or email with any posts you think are worth including in the next installment.

Listening

2010-07-06T20:06:00.002-05:00

I saw my first pediatric patient today. She's in her late teens and is currently in-patient for hematology. She actually requested to see the social worker! My officemate offered to go down there with me, in case the patient had any questions. Which of course she did. The beauty is that now I know what the answers are! And I think it will stick. When I brought a few forms back to her room, we started to chat. She was so lonely. She was frustrated to be back in the hospital. She's had a humdinger of a life already but this illness was wreaking havoc on her future plans. So I sat with her and listened. And let her spill it all out. By the end of our time, she said she felt better having someone to just listen to her. I told her I'd stop back tomorrow to check on her. It felt good.

Tomorrow

2010-07-01T20:59:00.003-05:00

Tomorrow I have to really start working. Or something like that. Two weeks of orientation have almost come to an end. Tomorrow morning I turn on my pager for the first time. I will no longer be "incognito!" Next week I'll start receiving referrals. I'm hoping I can spend time shadowing the nurse practitioners in my clinics and handle the referrals on the side. I have so much to learn, from disease process to TN resources to my employer's protocol. It's exciting and overwhelming all at once. It is so incredible to work for an organization that is pro-social work. I feel so welcome and like a vital member of the team. It's refreshing to not have to advocate that the other staff need me- they know it and they're excited for me to start. I can envision myself doing this job well...it just might be quite some time until that happens, or rather until I'm confident that I'm doing it well. All the other social workers commiserate that orientation is overwhelming and you have a million questions once you start working with patients and families. Most of them have said it took a year or two before they felt like they had a good grasp on things. They have reassured me they are available to help out, no matter what I need. And I will surely take them up on that! So while it's scary to start direct care since I feel like I know nothing, it's time to jump in with both feet. I'm a good social worker and I was hired because they believe I can do this. I need to be OK with not knowing everything and trust that I will pick it up along the way. Stay tuned...

Under Construction

2010-06-27T14:00:00.000-05:00

I've written about protecting patient confidentiality before. Now that I have a new job in a new place, I've decided to take confidentiality one step further and make this blog a little more "anonymous." A while back I created a personal blog and played around with Blogger on what was and wasn't connected to me. I've decided to permanently separate those blogs now. If I was following your blog and you are a social worker or work in end of life care, I've temporarily stopped following your blog under the current settings. Don't worry! Once these changes are in effect, I'll start following again under this blog only. Confused? I am too. The long and short of it is that I need to separate my blogs and ensure that my name is not associated with this blog. I do welcome any and all emails but they will be going to a new account. I just hope that I can make the proper changes without accidentally deleting this blog! I do plan to continue blogging my experiences here but I may not be able to share as much as I did while working for hospice. I plan to discuss this with my supervisor tomorrow and see what other safeguards I can take. Thanks for all your support as I continue through orientation! I do have more of a hospice/bereavement backlog so keep your eyes peeled for those posts, hopefully sprinkled in with more of my new experiences.

Really Starting

2010-06-24T19:13:00.000-05:00

Orientation has been good but overwhelming. I work for a very large organization. I didn't realize how large it was until this week. It's amazing how many ways you can get lost. I've decided to stick with the routes I know and figure out the shortcuts later! I've been meeting tons of people from my departments, learning about the different clinics I'll be a part of, meeting the other social workers, meeting with my supervisor, and setting up my office. That's right: I actually get an office! I share it with another social worker and I am so astounded to have my own space, with a window view no less. Next week will be filled with more meetings and field trips, as well as computer training and a host of other activities. After that I hope to do some observation of the social workers who have been covering my department and the nurse practioners and other staff. And then, I guess I'll have to dive in and hope for the best. Most people have said it took them a couple of years before they felt like they had a good understanding of all the components...so that makes me feel better. There are some interesting opportunities for me to develop programs and contribute my strengths to existing programs. I'm not even going to think about that though until I figure out my new routine. One step at a time, one day at a time. Still, every day I pinch myself that I get to work here and that I will get to work with these children!

Starting

2010-06-20T19:24:00.000-05:00

Tomorrow is my first day of orientation. It's been nice to have a month off- I highly recommend it to everyone! I received my orientation schedule for the next two weeks and it's pretty overwhelming. Lots and lots of meetings, some at the hospital and some off-site. I just hope I don't get lost too often! There are the usual nerves associated with starting anything new. I hope to feel a little better about things once I'm actually there and start meeting some of my coworkers. I will certainly keep you all posted as I get a handle on the specifics of what my role will be. I've talked to or emailed with a few friends or online acquaintances that have experienced pediatric cancer or some other disease to find out if they utilized the social worker and get a sense of what things were helpful or what things were not. One thing I didn't think to ask anyone that occurred to me yesterday is how to address my previous experience, if it comes up. If a parent asks me what I was doing before I started working there, I can only imagine how they would respond to the word "hospice." Especially as pediatric hospice may be an outcome for their child someday. Does anyone have any suggestions? I don't want to gloss over my background but I also don't want to unintentionally send out adverse messages either. Thanks!

Preventing Elder Abuse

2010-06-17T21:55:00.000-05:00

Tuesday I wrote about reporting Elder Abuse; today I'll focus on prevention tips.

For the Older Person:

Avoid isolating yourself. Isolation can lead to loneliness, sadness, and depression, leading to the increased possibility of abuse or neglect, including self-neglect.
Maintain a strong network of friends and social contacts
Keep in touch with old friends and neighbors, even if you move
Develop a buddy system with a friend outside of the home, i.e. check in on each other regularly to make sure there are no problems
Ask friends and family to visit you at home
Participate in activities with friends and within your community
Volunteer if you're able
Get legal advice regarding your will, Power of Attorney for Health Care, as well as Property, Living Will, etc.
Review your wishes with your listed POA periodically to ensure you're on the same page
Review your will periodically
Assertively express your wishes and how you will or will not be treated by those around you
Arrange to have your Social Security and/or pension checks deposited directly into your bank account
Add your name and number to the national "Do Not Call Registry"
Don't live with someone that has a history of violent behavior or substance abuse
Don't sign a document unless someone you trust has reviewed it

For Families:

Maintain close ties with aging relative and friends, check in with them regularly
Listen to what the older person tells you. Offer advice but don't dictate.
Find sources of help and use them, i.e. geriatric case manager, community resources
Consider your family's ability to provide long-term, in-home care. List the pros and cons.
Don't offer to be a personal caregiver or to bring the older person in to your home unless you thoroughly understand the demands of caregiving and can meet the responsibility and costs involved
Seek out caregiving training if you choose to care for the older person in your home

Explore alternative sources of care, i.e. long-term care facility, assisted living, adult daycare
If a hired caregiver or long-term care facility is caring for the older person, stay involved and observant to ensure quality care. Vary the time and day that you visit.
Anticipate that someday your loved one will be incapacitated and figure out now what the best plan of care will be, ask them what their wishes would be
Pay attention to your own limitations and set boundaries. Take regular breaks, line up outside professionals or family/friends to provide respite.
Don't expect family problems to disappear if the older person moves in to your home, if anything, they may intensify
Consider counseling for yourself and/or the older person if behavior problems become an issue
Don't limit the older person's independence or unnecessarily intrude on their privacy

For Communities:

Develop new ways to provide direct assistance to caregivers
Ask other community groups to become more involved in Senior Service programs
Encourage public and private employers to support caregivers, such as through Family Medical Leave programs, flex time, etc.
Publicize support services that are available, as well as accessibility to professionals
Train public agency employees in initial response and case management
Provide training for direct service employees
Recognize that many forms of elder abuse are crimes

The National Center on Elder Abuse explores some of the causes and how to prevent them for fully in their booklet: Preventing Elder Abuse by Family Caregivers.

Do you have any other tips on prevention?

World Elder Abuse Awareness Day

2010-06-15T19:26:00.000-05:00

Today is the 5th Annual World Elder Abuse Awareness Day, a campaign started by the National Center on Elder Abuse. You may be wondering what constitutes as elder abuse and what you can do about it. I'm glad you asked!

Elder abuse is the least recognized form of family violence, according to the 2006 Illinois Elder Abuse Annual Report. It takes on many forms, ranging from severe physical abuse to neglect to financial exploitation.

Physical abuse: intentional infliction of physical harm of an older person. This could include slapping or excessive forms of physical restraint.
Sexual abuse: Any sexual activity for which the older person does not consent or is incapable of giving consent, unable to understand, threatened or physically forced. This could include touching, fondling, exhibitionism, and oral, anal, or vaginal intercourse.
Emotional/psychological abuse: Intentional inflection of mental harm and/or psychological distress upon the older adult. In addition, any activity used to compel the older person to engage in conduct from which she or he has a right to abstain or to refrain from conduct in which the older person has the right to engage. This may include verbal assaults, threats or abuse, harassment, or intimidation.
Confinement: restraining or isolating the older person for reasons that are not related to medical care.
Passive neglect: Caregiver's failure to provide an older person with the necessities of life, including food, clothing, shelter, or medical care, because the caregiver does not understand the older person's needs, lacks awareness of services or resources available to meet needs, or lacks capacity to care for the older person.
Active neglect/Willful deprivation: Caregiver intentionally fails to meet the older person's basic needs, such as denying assistance with medication, medical care, shelter, food, therapeutic device, or other physical assistance; the older person is then at risk of harm.
Financial exploitation: The misuse, misappropriation, and/or exploitation of the older person's material (i.e. possessions, property) and/or monetary assets. This is to the disadvantage of the older person and the profit or advantage of another person.

Recognize the physical warning signs (the existence of one or more of these does not necessarily mean abuse is occurring):

uncombed or matted hair
poor skin condition or hygiene
unkempt or dirty
patches of hair missing or bleeding scalp
any untreated medical condition
malnourished or dehydrated
foul smelling
bed sores
torn or bloody clothing or undergarments
scratches, blisters, lacerations, or pinch marks
unexplained bruises or welts
burns caused by scalding water, cigarettes, or ropes
injuries that are incompatible with explanations
any injuries that reflect an outline of an object, ie handprint

Recognize the behavioral warning signs:

withdrawn
confused or extremely forgetful
depressed
helpless or angry
hesitant to talk freely
frightened
secretive

Recognize the financial warning signs:

unusual banking activity, such as large withdrawals within a brief time period or ATM activity by a homebound older person.
Bank or credit card statements no longer come to the older adult (if the older person has dementia, finances may be managed by their Power of Attorney for Property in which case this may be appropriate.)
Documents are drawn up for the older person to sign but they cannot explain or understand the purpose of the papers.
Their living situation does not add up, based on the size of their estate, such as unpaid bills or lack of new clothing.
Caregiver only expresses concern about the older person's financial status and doesn't ask about or express concern regarding their physical or mental health.
Jewelry, art, furs, or other valuables are missing.
Signatures on checks and other documents do not match the older person's.
Recent acquaintances, such as housekeepers or caregivers, declare undying affection for the older person and isolate them from friends and family.
Recent acquaintances promise lifelong care in exchange for deeding all property or assigning all assets over to them.

Possible Causes

Caregiver stress
Dependency or impairment of the older person
External stress
Social isolation
Intergenerational transmission of violence (aka cycle of domestic/familial violence)
Personal problems of the abuser

Reporting Elder Abuse
If you suspect elder abuse is occurring, you should report it. When in doubt, lean towards reporting. I will never forget the case of this Geneva woman who was gravely neglected by her two daughters. Paramedics found her weighing 80 pounds, lying on dirty sheets with ants crawling on her. She was suffering from severe dehydration. She also had bedsores on her back, one so deep that hospital workers said they could see her vertebrae. These same hospital workers reported the daughters to their county's Elder Abuse department. It made me wonder where the rest of the family was when this was occurring or what the neighbors thought. Did no one else in this poor woman's life suspect something was not quite right?

Abuse can continue and escalate if left unchecked. Intervention can save the health, dignity, assets, and even life of the older person. If the older person is in immediate danger, call 911. If you suspect abuse is occurring and the person lives at a long-term care facility, the report should be made to the local Long-Term Care Ombudsman, local law enforcement agency, or county Elder Abuse department. If abuse has occurred in a home or assisted living setting, reports should be made to the local county Adult Protective Services (aka Elder Abuse) or to the local law enforcement agency. If you report a case, you are protected from both criminal and civil liability. Reports are confidential.

Certain professions are mandatory reporters, including the following fields: social services, adult care, law enforcement, education, medicine, state service to seniors, and social workers. Mandatory reporting requirements are in effect only when the reporter believes the older person is incapable of reporting the abuse themselves.

Making a report
Be prepared to give the following information:

alleged victim's name, address, phone number, sex, age, and general condition
alleged abuser's name, sex, age, relationship to victim and condition
circumstances that led the reporter to believe the older person is being abused, neglected, or financially exploited; be as specific as possible
whether the alleged victim is in immediate danger, the best time to contact the person, if he or she knows abuse is being reported, and if there is any possible danger to the worker going out to investigate
whether you believe the older person could make the report themselves
your name, telephone number, and profession
names of others with information about the situation
if you're willing to be contacted again
any other relevant information

When a call is received
A trained elder abuse case worker will respond within a specified time period depending on the severity of the case. This could be within 24 hours for the most dangerous or serious situations, within 72 hours for less serious ones, and up to 7 days for all others. The caseworker will contact the victim and help determine what services are most appropriate to stop the abuse. This could include in-home care, homemaker services, nutrition services, adult day care, respite care, housing assistance, financial or legal assistance and protections, counselling referral for the victim and abuser, guardianship proceedings, nursing home placement, and emergency responses for housing, food, etc. A competent older person may refuse an assessment and may refuse all services and interventions. Every effort is made to keep the person in his or her home. When the older person has dementia or other cognitive impairment, the caseworker will assess and provide services as needed. Guardianship and nursing home placement is always the last resort.

Resources for professionals.

Coming soon, tips for preventing elder abuse.

Air Ambulance Network

2010-06-12T19:20:00.000-05:00

Air Ambulance Network's website is a treasure trove of flight options for those who are critically ill and medically stable. Sure, you can arrange a commercial flight on your own but there is a host of paperwork that you must have in order, especially if the patient needs any portable equipment. This is where Air Ambulance Network comes in. They will arrange for the required medical clearance from the airline, book tickets for the patient and family member(s), coordinate with attending and received facilities, set up ground transportation, arrange for necessary portable equipment, and arrange for aeromedically trained personnel. They require 7 to 10 days notice so they will have time to make the necessary arrangements. The Medical Escort Service is for patients that are medically stable but require basic monitoring, oxygen, assistance in the bathroom or with hygiene, administration of medications, and assistance with boarding and departing the plane. Air Ambulances are available for the most basic patient to the critically ill or injured patient. Click here to request a quote.

Science Care

2010-06-12T18:07:00.000-05:00

I'm back on the blogging wagon, ready to start writing all the posts I meant to write this past year. First up is Science Care, a whole body donation program. Science Care facilitates both whole body and organ donation. Science Care is accredited by the American Association of Tissue Banks (AATB) and accredited as a provider by the Accreditation Council for Continuing Medical Education (ACCME); learn more here. If you don't care to learn more about body donation, I suggest you stop reading now. Body donation is used for medical research and training for physicians and surgeons, thus improving quality of life for future generations. If you sign up with Science Care, you can be both an organ donor for transplant and a whole body donor. Acceptance of the organ or body donation is contingent on medical and suitability criteria at the time of death. A donated gift could be used in several settings, such as medical school, a laboratory, or for medical research. To be blunt, your body may be embalmed and then dissected; if so, your body would not be publicly displayed. Obviously, you'll have no control over how your body is used if you choose to donate, although they will try to meet your wish to donate to specific research. Donating your body is not for everyone but it is an incredible gift. Once donation is complete, the cremated remains are returned to the next of kin, usually in 3-5 weeks.

Almost everyone can donate regardless of age, location or health. Most illnesses are accepted, including cancer, heart disease, lupus, ALS, arthritis, stroke, H1N1 and diabetes. Donors are screened to ensure safety and suitability of the donation for medical research and training. If you have HIV/AIDS, hepatitis B & C, active tuberculosis or syphilis, you will not be able to donate. Other considerations include severe obesity, decomposition, trauma or extensive orthopedic surgeries.

Science Care can accept donations from every state in the U.S. except Minnesota and New Jersey. Donations from outside the United States are currently unable to be accepted. If you're over 18, you can click here to pre-register with Science Care. You'll need to authorize the Donation Form and then the Cremation Form. If you're thinking you would like to donate your body to science, it's important to plan in advance. This will allow you to discuss your wishes with loved ones and eliminate any confusion at the time of death. Science Care has also compiled a handout on religious viewpoints regarding organ and tissue donation. However, registration can also occur at the time of death by the next of kin. There are no costs associated with donation and Science Care will provide transportation from the place of death so there is no need to call a funeral home. This also means that it will not be possible to have an open casket funeral; the funeral may be delayed if family decides to wait for the cremated remains to be returned before holding the service. Science Care will also file the death certificate, provide cremation, and return the remains to the next of kin, if requested.

At the time of death, simply call Science Care. If the person was pre-registered, you can follow the directions on their personalized ID card. A staff member will need to speak with the next of kin to complete a medical and social history questionnaire to determine acceptance, sign any necessary authorization forms, and verify information for the death certificate. Science Care is available 24 hours a day.

Are there any good organ or body donation organizations of whom you are aware or with whom you have worked?

Palliative Care Grand Rounds 2.6

2010-06-02T17:17:00.000-05:00

The latest edition of Palliative Care Grand Rounds is up at Bedside Manner. There's lots of good stuff- I especially enjoyed the New York Times articles. GeriPal is slated to host next month and be on the lookout for me to host in September.

Respite Admission Process

2010-05-27T14:43:00.000-05:00

Medicare covers respite stays through the hospice benefit. Generally, a patient is eligible to one 5 day stay per benefit period. This is a helpful resource for primary caregivers, whether they're burned out and need a break or are simply going on vacation. The patient will go to a Medicare-approved facility, such as a long-term care facility or hospice home, during the respite stay. The hospice social worker sets up the respite stay. I've been able to set up an emergency respite stay as quickly as 3 or 4 hours. For a preplanned respite stay, a day or two's notice for the facility is generally enough, so long as they have a bed available.

There are tons of phone calls, faxes, and legwork going in to every respite stay. There's a lot of waiting to hear back from various facilities. A place may have a bed but they still need to review the patient's medical information before they will decide whether to accept them for respite admission. Here is a behind the scenes glimpse of what goes on when respite is requested.

1. Review LTC facilities with respite contracts, check for bed availability, inform RN that family is requesting respite care.

2. Call family and discuss contracted LTC facilities, ask verbal permission to fax information to LTC facilities.

At this time, decide on mode of transportation. Will the family transport the patient or will a Medicar or ambulance be necessary?
If using Medicar or ambulance, explain that a specific time will be arranged with the facility and mode of transportation.
Check on specific equipment needs, such as oxygen, catheter, hospital bed, wheelchair, etc.
Explain to family that hospice pays for room and board for 5 days, medications related to the terminal illness, and transportation.

3. Call Admissions Director of chosen LTC facility(ies) and ask availability. Inform if patient is on oxygen or has a Foley catheter. If there is availability, then:

Ask if patient's MD is on their staff or if family needs to choose a physician on their staff.
Ask if the patient can bring their own medications
Get a range of possible admission times
Call family and have them choose a time, taking travel time in to account. The facility may need the family to fill out some paperwork so they should factor this time in as well.

4. Fax the patient's record. The following documents should be included: initial assessment, H & P, initial plan of treatment, care plan, face sheet, medication list, hospice consents, DNR (if signed), psychosocial assessment, last RN note, last MSW note, last ICC summary.

5. Call family and report above arrangements and:

Explain the time that patient is expected at LTC facility
Inform them that DNR needs to accompany patient, especially if they are not providing transportation
If they can take their own medications, they must be in original containers, clearly marked

6. Call the RN (or triage nurse if on the weekend) and request they call the patient's physician to inform that patient is going to respite care for 5 days and also to see if physician will see patient at the nursing home.

7. If needed, call the ambulance or Medicar.

Request specific time
Inform them about how many steps into the house and whether the patient is on the first or second floor
inform them if there is a need for oxygen
If using Medicar, order a wheelchair, if needed.

8. Call the family and confirm the time and destination.
9. Call facility Admissions Director and confirm time that patient will arrive.
10. Inform other hospice team members by voicemail.
11. Inform triage/communication line/hospice office.
12. Arrange return transportation after 5 days, if needed.

The Next Chapter

2010-05-25T16:17:00.000-05:00

I am so excited to let you all know that I've been offered a pediatric social worker position! My focus will be on children with brain tumors and sickle cell disease. When I first decided to go into social work, I envisioned myself working with terminally ill children. Then I landed in hospice and loved it. The desire to work with children never quite went away. I can't wait to be a part of the oncology and hematology departments and offer support to the children and families who require their services. I am still marveling that God has brought me this far and that I will soon start my dream job! I have a few weeks before I start work so I will be catching up on all my hospice/bereavement/end of life posts in the meantime. And once I've settled a bit into my new role, I plan to become a hospice volunteer because I could never fully leave end of life care.

Last Day

2010-05-24T11:34:00.000-05:00

My last day of work was May 19. I moved to Nashville the next day. And now I'm unpacking and doing all the things one must do when they're settling in to a new place. My last day of work was actually anticlimactic. I saw my Bucket List patient and his wife one last time. They gave me my favorite Irish Breakfast tea and we reminisced about all that was accomplished in the almost 2 years that I have been visiting them. My employer still had not hired my replacement so I have been prepping all my patients that my caseload has been divided between the other 3 social workers and that they will likely not be seen on the same visit frequency because of this, unless there is an urgent need. Most of my patients have been sad to lose me but excited by this new opportunity. Of course, I worry about how some of my "favorites" will do without me but it's out of my hands. At least the position has been posted and a couple of resumes have already been submitted. Hopefully the remaining social workers will only be strained for a short time.

After visiting the patient, I headed to the office for an afternoon of meetings. The psychosocial meeting was at noon and made me glad to be leaving because of some of the changes administration/Medicare wants to introduce. Like charting on our laptops in front of patients. Um, no thank you. I can see how doctors or nurses might benefit from this but laptops are often perceived as barriers. And if my job is to listen and be supportive, I don't want any barriers getting in the way of that! True, some families might not mind or you might be able to sneak into a corner after the visiting is done to chart but it just doesn't seem right to me.

After that meeting, it was pretty well time for ICC. A few of the nurses surprised me with goodies in honor of my last day. Including a cookie cake with White Sox flags. Do they love me or what? In between discussing patients, I finished my charting, cleared my laptop, and gathered everything to be turned in. And when the meeting was over, I hugged my coworkers goodbye amidst promises to keep in touch and then walked out the door. I felt free. I felt ready for the next chapter. (Next chapter to be revealed soon!)

Hair Matters

2010-05-16T12:37:00.000-05:00

I've had really long hair for a couple of years. Last week, I cut off a foot of hair for a sleek, new look (and donated the hair to Pantene's Beautiful Lengths program.) It's been getting rave reviews and a few funny responses. One of my coworkers told me I look so much more professional now. Um, OK? A patient took one look and said, "I liked it better long." You can't please everyone!

Nail spa?

2010-05-15T09:23:00.000-05:00

What's something you wouldn't expect to happen on a routine visit? I went to see a woman who had just celebrated her 95th birthday earlier this week. She had received boatloads of flowers, cookies, and make-up as gifts. She showed me her prettily painted pink fingernails and then asked me if I wanted some nail polish. I explained that I don't paint my fingernails because it chips off too easily- I don't like to make the effort. Initially she accepted this reply but then she continued to ask me about doing my nails. So finally I asked her if she wanted to do my nails. She lit up like a Christmas tree! She got out all the necessary tools, opened the nail polish, and then stopped. "I can't see too good," she admitted. I encouraged her that it was OK, we didn't have to paint my nails. Well, she wouldn't have that. She called her daughter over and directed her to do my nails. The daughter and I were chuckling to ourselves because it clearly didn't matter to me if my nails were done or not...but since it mattered to this lady, I relented. And so it was that a patient's daughter painted my nails in pink.

Hand off

2010-05-13T20:43:00.000-05:00

I went to see an patient with Alzheimer's and his daughter for the last time. I've been visiting them since last summer, usually one or two times a month. The patient can be combative at times, especially during personal care. My hat is off to his daughter, not only for caring for this sometimes difficult man, but also because he abused her and her siblings when they were young. Somehow she found the strength to forgive him and believes he deserves to be comfortable as he dies, in spite of the father he was.

Whenever possible, I try to time my visits with the hospice RN. I hold his hands while she changes the dressings on the wounds or changes the catheter. For whatever reason, he stays calm when I'm holding his hands and listens to my words of reassurance as he's repositioned and tended to. As I walked into his room this afternoon, he actually reached his hand out to me! He's never done that before, although sometimes he seems to recognize me. It was sweet to hold his hands one last time today.

Eight

2010-05-08T10:52:00.000-05:00

That's how many work days I have left! I can hardly believe it. Last night my Bucket List patient and his wife threw me a goodbye party. I've admitted I don't have much by way of boundaries left with this couple. I will certainly miss my weekly visits and helping "Jim" progress in his Bucket List. He's knocked 20 + items off his list, with about 5 or 6 left to go. The hospice RN has said she'll do her best to help him in my absence. They haven't hired my replacement so I tried to pick an MSW that will be supportive for "Jan," as she relies heavily on me. Jim and Jan are sad that I'm leaving but excited for the opportunities in Nashville. Somehow I ended up cooking Pasta Carbonara for everyone- one last time in their kitchen. The hospice team was there, as well as the former bereavement coordinator whom I adore, plus my parents. And even though it was ostensibly in my honor, I felt like it was just a nice evening to gather together and eat good food.

Sunday night will be my last time on-call for hospice and I'm crossing my fingers the phone will stay quiet. I probably just jinxed myself! In the next 8 work days, I will try to see the remainder of my caseload that needs May visits (I think around 20 to go), plus wrap things up with 4 bereavement clients. They aren't giving me any new patients anymore so that is a relief. I can just focus on the people in front of me. I also have to finish Stones into Schools for my Three Cups of Tea patient- just 40 pages to go. We'll end with a tea party, as we did for the conclusion of Mortenson's first book. The patient is less aware and sleeping more but every once in awhile she gives us an indication that she has been paying attention to the story. I feel like it matters more to her husband that we finish reading the book but I'm interested to see how it ends too. Beyond all this, I have to finish my charting, enter IDT notes one last time, and complete my exit interview and whatever else HR requires. I think it's doable. But I haven't factored in saying goodbye to my favorite patients or my coworkers. It's best to stay in denial for now...

Reactions

2010-05-02T11:15:00.000-05:00

Just two and a half weeks to go at work, only to be summoned for jury duty tomorrow. While I'm normally all about civic duty, the timing could not be worse! Oh well. I'm hoping I'll get to sit there and read my book all day and then be dismissed. Things are moving along at breakneck speed now. The to-do list never seems to end. I still need to set up my utilities and renters insurance, figure out banks, and buy all sorts of things for the new place. Plus, divvying up what's mine vs. my roommate's in our apartment. Plus, see all my patients one or two last times so that whichever MSW takes them over doesn't need to worry about May visits. I had hoped that by giving 5 weeks notice, maybe just maybe they would hire someone to replace me before I left. Wishful thinking, I know, but I even had a candidate in mind which I presented to my director before I gave notice. Unfortunately, all kinds of changes are going down in the office and I think finding my replacement has gone to the bottom of their list. I did my part to try to avoid screwing my coworkers over. The May visits are the very least I can do now.

It's strange to be moving and not know where I'll be working. My parents so did not raise me this way. You always have a job lined up before you quit the job you have. And yet, I am so glad to be taking this leap of faith. If I had renewed my lease, then I would have missed out on interviewing for my dream job. Even if I'm not offered the position, I feel like those interviews were a blessing from God and feel such assurance that something will work out. Truthfully, part of me is looking forward to a break. I'll find out about the pediatric social work position after I move so I might not have much of a break before orientation starts. (And I'm so excited about the position that I won't mind!)

Coworkers and patients/families alike have been sad about my news but overall so excited for me. Some people have talked about the roads they never traveled, and so maybe in some ways, they are living vicariously through my crazy adventure. My Bucket List patient and his wife are so sad and keep telling me what a difference I've made in their lives. His wife particularly seems lost- she relies so heavily on our weekly sessions. On the other hand, they are my biggest cheerleaders and want to throw a little send off party for me. The daughter of one of my favorite patients teasingly asked me how my move would affect my weekly visits. And the patient himself asks me each week if I'm still planning on running off on him, then says he's going to keep telling me stories until I change my mind. I'm trying to set up follow up for my bereavement kiddos and that seems to be falling into place. The bereavement coordinator asked me "Who's going to work with all our kids now?" I had no answer for her- the program has largely been on hold, outside of what I'm able to accommodate, since she took over her role a year ago. There are a couple of Just 4Kidz volunteers waiting in the wings though and I feel the program is in their good hands now.

I keep getting assigned new patients (hopefully I can put my foot down on that this week) and it is difficult to do my assessment and build rapport with them, only to tell them that I've resigned from my position and a new MSW will follow them after I leave. Most of these families have been truly disappointed and I get where they're coming from. It's hard enough for me to get to know them and know that I won't be able to see this through. It seems unnecessarily cruel when patients and families have enough to deal with.

On Friday I sat down after I finished my end of month charting and tried to divvy up my caseload. Is it horrible to feel that with certain patients/families, no one else will be able to come close to me? I'm not so naive or arrogant to think that no one can do as good a job as me...I just want my patients to have the best. The other social workers are great but we all have such different styles that I worry/wonder how they will connect to some of the people I'll be giving them. It's out of my hands though.

Memory Box

2010-04-29T20:35:00.000-05:00

One of my favorite activities with bereaved children is to make Memory Boxes. This is a fun activity, gives the child a nice keepsake, and has a lot of possibilities for conversation and reflection.

Materials needed: a box, magazines, Mod Podge, foam brush

You can use a shoe box or cigar box but I prefer photo storage boxes. They tend to be sturdier and can hold more items. Just be sure to detach the metal label holder first! Put the lid on the box and then trace under the lid with a pencil, all away around the box. This is your guideline for how high up you can glue images. If the images encompass the whole box, the lid does not always fit correctly or rips the images off.

Speaking of images, there are two ways of doing this. 1) Give the child a pile of magazines and have them cut out pictures and words they like. This method will probably extend the project by at least a week. Make sure the magazines you have are child-friendly! 2) Have a stockpile of collage materials. I have folders with big and small backgrounds, pictures of animals, people, food, "things", and then words/sayings. The child can then go through each folder and pick out what they like. (Plus, you will now have numerous opportunities to create collages!)

One thing I like to do is have the child pick items for the outside of the box that are "positive", things they like, or the way they want to be seen. The inside of the box can then be more private, i.e. how they're really feeling, things people don't know about them, etc. They can also use pictures of their loved one on the outside or inside, depending on their preference. The concentration will be on selecting images, creating a relaxed environment to discuss their loved one, how they're coping, and what their concerns are.

Once images are selected, it's time to start gluing! Spread out some newspaper, pour the Mod Podge into a bowl (one you can throw away makes clean up a snap), and have the child consider where they would like to place the image. Decoupage doesn't tend to get too messy but the child will likely end up with a bunch of glue on their hands, even if they're using the foam brush. Have the child brush the Mod Podge onto the box surface and glue down the images. Use extra Mod Podge if something doesn't appear to stick quite right. Once one side of the box is finished, seal the project with a final coat of Mod Podge. Generally we'll do the outside of the box one week and the inside of the box the next week...making this a, you guessed it, two week project. Allow to dry thoroughly before the lid is put on the box.

If the child wants, they can discuss or show you what they'll be putting in the box. It may be keepsakes or pictures related to their loved one or it might be a cool place for them to keep their rock collection or school papers. It's up to them!

Another Confession

2010-04-21T22:19:00.000-05:00

I debated over when and how to tell my loyal readers the latest news in my life. In short, I'm moving to Nashville in less than a month! The reason why I'm moving is somewhat lengthier. It all started with a book: Crazy Love by Francis Chan. To say that it was "challenging" is inadequate. Chan wrote that I should consider an area of my life where I was living out in faith, where if God didn't show up, I'd be in big trouble. I was shocked to realize that I couldn't come up with anything. I pray every morning that God would give me strength to do my job but I also know that I am an excellent listener and clinician. I don't depend on God as heavily as I could or should in my day to day life. I started praying then about how I could live with more dependence on God and it led me in the direction of Nashville.

I've been visiting my best friend and her husband there for the past 5 years and every time, it's a little harder to leave. I've become friends with their friends, fallen in love with their church, and been the best auntie I can be to their 14 month old daughter. Plus the weather doesn't hurt! I never thought I would stay in my hometown after finishing grad school but I believe it's where God intended me to be for this period of time, especially when I consider the circumstances behind my great-aunt and then grandma's times on hospice. I have a nice life here but I've been feeling “stuck” the past couple of years, especially as I've realized hospice social work is no longer the best fit for me. I shine when it comes to counseling, life review, goal work, and prebereavement support. I don't like having to do respite placement, long term care planning, and anything related to case management. I know that the latter are valuable services for families- I've just come to the point where I don't want to be the one doing it anymore.

After a lot of prayer, I've decided to move to Nashville when my lease ends next month. This is probably the most exciting, terrifying thing I've ever done. I've been looking for a job for the past few months and am excited to report that I'm in the interview process for a pediatric social work position. For awhile I thought I would move in the direction of bereavement counseling and that may still be in my future. However, I've always been interested in working with sick children. I can hardly believe that I'm still in the running for what may be my dream job! Because of the timing of my lease, I may end up moving without having a job lined up but that's OK. It took me a year and a half after grad school before a hospice position opened up- I survived then and I know I'll do just fine now. It might be nice to take a break!

So what does all this mean for this blog? Well, I have at least a year's worth of posts I've never had time to write so I plan to continue on as always. Depending on the position I take, there may still be a palliative component, in which case I will still have a plethora of opinions and stories to share. I'm also hoping to become a hospice volunteer because I know I could never get out of end-of-life care completely.

I announced my resignation to staff last week and have started telling patients. Everyone is sad but excited about this opportunity. I have a million things I could say about telling patients that I've resigned but since I still have another month to go, I'll save those thoughts for another post.

Drive Safe

2010-04-12T21:25:00.006-05:00

I was behind this truck on a recent road trip. I'm not familiar with makers of caskets but their sense of humor certainly got my attention! (In case you can't read it: under Please Drive Safely, they added "heaven can wait.")

Everyone's Friend

2010-04-11T19:31:00.002-05:00

I do not have much personal experience with little people. What I do know is second hand information gathered from school or shows like "Little People, Big World." And this is why I know some little people preferred to be called little people, while others prefer their specific type, such as dwarf. I now have a patient who is a dwarf and prefers to be called so. He lives at a nursing home and is well loved by the staff there. Locally he is well known for his artistic talents and has won a number of awards and has been featured in the papers several times. He has letters from presidents dating back to Ford and even an original Reagan campaign button. His room is a treasure trove of art and information. He shows visitors his memorabilia. And then he hands out a business card and a pencil that lists his name followed by "Everyone's Friend." Indeed, this patient is so gregarious that the pencil seems fitting. He has a wicked sense of humor and regaled me with stories about he used his height difference to his advantage with the ladies. He is hoping to finish a few more of his paintings, hoping he can walk again, hoping for the best. I look forward to continue getting to know him better.

Breathing Forgiveness, Love, and Peace

2010-04-03T11:58:00.002-05:00

Close your eyes and concentrate on your breathing.
Breathe in and breathe out.
Breathe in and breathe out.

As you are concentrating on your breathing,
bring to your awareness that which is causing you to suffer.
Bring to mind the source of your suffering.
Bring to mind the anger connected to your suffering.
Bring to mind the sadness connected to your suffering.

Imagine gently placing all of your suffering inside the very center of your being,
in the center of your body.
Your suffering is a the very center of your body.

As you are breathing, imagine the air you inhale
swirling around that suffering,
that suffering that is at the very center of your being.
Feel the air that you inhale swirl around your suffering.

With each breath you take in,
imagine the air swirling around that suffering.
Breathe in the air of forgiveness.
Imagine all of that forgiveness swirling around your suffering.
Every breath you take in is a breath of forgiveness.

Forgiveness moving through your suffering.
Breathe in the air of forgiveness.
Forgiveness coming to your suffering.

Now, with each breath you expel,
imagine the air moving out from your suffering.
It is the air of forgiveness.
You are now breathing out forgiveness.

As you continue to breathe out forgiveness,
make a smile of forgiveness.
Breathe out forgiveness.
And smile.

Now with each breath that you take in,
imagine the air swirling around that suffering at the very center of your being.
Breathe in the air of love.
Imagine love swirling around your suffering.
Every breath you take in is a breath of love.
Love moving through your suffering.

Breathe in the air of love.
Love coming to your suffering.
Now with each breath that you expel,
imagine the air moving out from your suffering.
You are now breathing out love.

As you are breathing out love,
make a smile of love.
Breathe out love,
and smile.

Now, with each breath you take in,
imagine that the air is once again swirling around your suffering.
Every breath you take in is a breath of peace.

Peace moving through your suffering.
Breathe in the air of peace.
Peace coming to your suffering.

Now with each breath you expel,
imagine the air moving out from your suffering.
You are now breathing out peace.
As you are breathing out peace,
make a smile of peace.
Breathe out peace,
and smile.

You are breathing in forgiveness.
You are breathing out forgiveness.
You are smiling the smile of forgiveness.

You are breathing in love.
You are breathing out love.
You are smiling the smile of love.

You are breathing in peace.
You are breathing out peace.
You are smiling the smile of peace.

There is forgiveness with our suffering.
Forgiveness.

There is love with our suffering.
Love.

There is peace with our suffering.
Peace.

Forgiveness.
Love.
Peace.

*Please read the background on Guided Imagery before using this with a client.

My Sacred Temple

2010-04-03T11:47:00.002-05:00

While in a comfortable position, close your eyes
and center your attention upon your feelings.

Sense the particular feelings that you have when I say the following words:
peace
contentment
freedom
safety.

Now, with those feelings in your consciousness,
imagine a special place of retreat made just for you.
This is your private, sacred temple.
Imagine this place that is characterized by peace, contentment, freedom, and safety.
Whatever place comes into your consciousness, stay there in your mind.

Do not let other places or thoughts intrude.
If they do, keep returning to that place of peace,
contentment,
freedom,
and safety.

Become completely absorbed in this place.
Imagine the soothing feelings that permeate your entire body.
Imagine the relaxing sounds that you hear in this place of peace.

Try to sense the soothing aromas that are present in this place.
Examine what is around you.
Examine what is below you.
Examine what is above you.
Examine what you see in the distance.
Examine what is close to you.

Examine everything that is contributing to your peace,
contentment,
freedom,
and safety.

This is your special place.
This place belongs completely to you,
and you may come here whenever you want to come.

Whenever you are anxious, you may close your eyes and go to this place of peace,
contentment,
freedom,
and safety.
This is your perfect place.

Once again, examine this place with all of your senses:
the sights,
the sounds,
the aromas.

You are about to leave this place.
But you may return whenever you wish.
All you need to do is just close your eyes and travel in your imagination.
For now, say goodbye to the soothing aromas.
For now, say goodbye to all the pleasant sights.
For now, say goodbye to the peace,
contentment,
freedom,
and safety.

Whenever you are ready,
knowing you can always return,
slowly open your eyes.

*This imagery illustrates how we all have a hidden internal sacred space that is with us wherever we go. This truth can be comforting to the terminally ill as well as the bereaved. Please read background on Guided Imagery before using this with a client.

Guided Imagery

2010-04-03T10:51:00.005-05:00

Today I'm posting three guided imagery exercises I use regularly with patients and families as a means of reducing stress or anxiety. I would be remiss if I didn't review GI's effectiveness, principles, or precautions first.

Guided imagery is a two-part process. First, the user reaches a state of deep relaxation usually through breathing and muscle relaxation techniques. You might be directed to close your eyes and focus on your breathing or to release tension from your muscles, one body part at a time. Sometimes soothing music is played, although I don't do this when leading someone through an exercise. I have, however, encouraged people to purchase a CD of sounds or music they find to be soothing. I've found this to be especially helpful for people struggling with sleep.

Once the person is relaxed, imagery or visualization is introduced. Here we are only limited by our imagination. Common types are relaxation imagery, healing imagery, pain control imagery, and mental rehearsal. Guided imagery can promote relaxation, reduce stress, improve mood, control high blood pressure, alleviate pain, boost the immune system, and lower cholesterol and blood sugar levels. Not too shabby!

There are three principles behind guided imagery.
1. The Mind-Body Connection
Mind-created images can be almost as real to the body as actual, external events. It's similar to Pavlov's dog. Think of a time that you read a recipe and you started to salivate or became hungry, even though you'd just eaten. Your mind is creating images of the food described in the recipe but your body responds by drooling and becoming hungry. Your body's response will be stronger when the created image contains sight, sound, smell, feel, and taste, and even more so with an emotional component. The body understands sensory images implicitly.

2. The Altered State
We are capable of more rapid and intense healing, growth, learning and performance. We're more intuitive and creative. Our actual brainwave activity and biochemistry change, which allows us to do things we couldn't in our normal, waking state. Altered states are a part of every day life, consciously or not. You might miss your exit or wonder how you got to the other side of town, for instance. This can be a state of relaxed focus, a calm but energized alertness, a functional form of focused imagination or dreaming. Your attention is limited, or rather, concentrated on one thing. You are more sensitive to the object of your focus and less aware of whatever is going on around you. It's easier to lose track of time or miss what someone is saying to you.

3. Locus of Control
When we sense we are in control, we feel better and do better. Research has indicated that locus of control leads to higher optimism, self esteem, and ability to tolerate pain, ambiguity, and stress. Lack of control or feelings of helplessness lowers self-esteem and impacts our ability to cope as well as our optimism about the future. This describes perfectly what many patients and caregivers feel during a loved one's time on hospice and subsequent bereavement. The user is in control of guided imagery: each individual will picture and experience something unique to them. They can also decide when, where, and how to use GI, which in turn helps them feel they have some control.

Before leading someone through a GI exercise, you should assess their comfort level. They don't need to have prior experience or to even believe that this will work. However, if you're going to use The Beach, you might want to make sure they don't have any fears associated with beach, water, or drowning first. Before I begin any exercise, I let the person know that they may become sleepy or even fall asleep- and this is OK. When I have finished, they can wake up or open their eyes whenever they're ready.

Have the person get into a comfortable position, such as sitting back in a comfy chair (no stools!) or laying down in bed. Encourage them to breathe deeply, in and out. After an exercise, I will encourage the person to envision their "safe place" for a few more minutes or to describe it to me if they feel comfortable. I tell them they can go back to this place whenever they need. It might take a couple of times through the exercise before a person can do this on their own. It depends on their circumstances, strength of the GI outcome, and stress or anxiety level.

Along with The Beach, I also use Breathing Forgiveness, Love, and Peace and My Sacred Temple. Before leading someone through one of these exercises, I would encourage you read it out loud a few times to capture a soothing rhythm and cadence. Or try it out on friends and family- I'm sure they'd appreciate it!

The Beach

2010-04-03T10:38:00.003-05:00

Close your eyes.
Let your body relax and become heavy.
Hear yourself take long, gentle cleansing breaths
until soft natural breathing takes over.

You are standing on a silent road at the edge of an empty beach.
There are no people in sight and the beach is yours.
With your eyes closed, you raise your head toward the sun,
high in the blue sky,
and feel its warmth on your face.
The sun's rays erase all of your worries, your tension, your distraction.
There is only you and the beach before you.

You slowly move forward to the edge of the sand.
You remove your shoes and are now barefoot.
As you step into the sand, feel it on your feet.
It is soft and loose and warm and dry.
It feels comforting to your skin and you sink in as you step.

You stand still for a moment to experience your surroundings.
The day is fair and bright.
There is a light, warm breeze that moves in little swirls around your body.
It moves through your hair and your clothes and allows you
to feel free and unrestrained.

You can smell the seashore and you can hear seagulls a short distance away.
Feel the sun's rays on your head and on your back,
between your shoulders.

Listen to the gentle waves as they move along the edge of the sand.
Watch them roll in and out, in rhythm with your breathing.

You move closer to the water's edge.
Feel the sand under your feet as it becomes firmer and cooler.
Your feet no longer sink into the sand
but leave little puddles as you step.
The cool wetness seeps between your toes.

You move to the edge of the water and it washes over your feet.
The water is a perfect temperature for your body.
You step slowly deeper.
The level rises to your knees and then to your waist.
Be aware of the waves caressing your body and let them move you.

You gently lay forward into the water
and realize that you can breathe and see as naturally as if you were on land.
Float, and the let the rhythm of the water rock you as you gaze under the surface.
See the light of the sun as it breaks through the water
and reflects on the bottom.

You are totally relaxed and moving with the water's motion.
Now, lean back and float effortlessly with your face to the sky.
Feel the sun's rays as they dry your forehead.
Feel the serenity in your mind and body.
You are safe.
You are supported effortlessly and you stay in this place as long as you desire.
You are at peace...

*Please read background on Guided Imagery before using this with clients.

NHPCO's Response to Health Care Bill

2010-03-29T20:17:00.003-05:00

The director of our agency forwarded the NHPCO response to the passing of HR 3590, the Patient Protection and Affordable Care Act. NHPCO has been lobbying on the behalf of hospice and palliative care organizations and will continue to do so- in fact, this is the only kind of lobbying I can support:) On a serious note, if our country would start dialoging about end of life issues, I wouldn't be surprised if Medicare expenses would go down. And then maybe they wouldn't suggest cutting the hospice benefit but increasing it! Wishful thinking perhaps but this girl can dream. In any case, here are the highlights of the email.

"H.R. 3590 is actually the version of health reform that originated and passed out of the Senate last December. This version of the bill, the one that has now passed both chambers of Congress, softens the productivity cuts to hospice from a proposed $10 billion to $7.8 billion. Here’s an overview of what is in the final package relevant to end-of life care:

Market Basket Cuts & Productivity - Incorporates a productivity adjustment reduction into the market basket update beginning in fiscal year 2013, as well as a market basket reduction of .3 percent for hospice providers from fiscal years 2013-2019. Note that these cuts will not take effect until FY 2013.
Hospice Payment Reforms – (1) This provision would require the Secretary to collect data and update Medicare hospice claims forms and cost reports by 2011. (2) Based on this information, the Secretary would be required “implement revisions to the methodology for determining the payment rates for routine home care and other services included in hospice care” no earlier than FY 2013. (3) After January 1, 2011, a hospice physician or nurse practitioner must have a face-to-face encounter with each hospice patient to determine continued eligibility for hospice care prior to the 180th-day recertification and each subsequent recertification, and attest that such visit took place. In addition, the Secretary will medically review certain patients in hospices with high percentages of long-stay patients.
Medicare Hospice Concurrent Care Demonstration Program - Directs the HHS Secretary to establish a three-year demonstration program that would allow patients who are eligible for hospice care to also receive all other Medicare covered services while receiving hospice care. The demonstration would be conducted in up to 15 hospice programs in both rural and urban areas and would undergo an independent evaluation of its impact on patient care, quality of life and spending in the Medicare program.
Curative and Palliative Care for Children in Medicaid and CHIP - Allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a terminal illness.
Independent Payment Advisory Board - Creates an independent Payment Advisory Board tasked with presenting Congress with comprehensive proposals to reduce excess cost growth and improve quality of care for Medicare beneficiaries as well as the private health system. When Medicare costs are projected to be unsustainable, the Board’s proposals will take effect unless Congress passes an alternative measure that achieves the same level of savings. Congress would be allowed to consider an alternative provision on a fast-track basis. Requires the Board to make non-binding Medicare recommendations to Congress in years in which Medicare growth is below the targeted growth rate. Beginning in 2020, requires the Board to make binding biennial recommendations to Congress if the growth in overall health spending exceeds growth in Medicare spending.
Hospice Value Based Purchasing/Promoting High Value Health Care - Provides the Secretary of HHS the authority to test value-based purchasing programs for long-term care providers, including hospice providers, no later than January 1, 2016.
Quality Reporting - Requires hospice to report on quality measures determined by the Secretary (endorsed by the new quality measure consensus-based entity) or face a 2 percent reduction in their market basket update. Measures published in 2012 for reporting to begin in 2014.
Nationwide Program for National and State Background Checks on Direct Patient Access Employees of Long-term care Facilities and Providers - Establishes a national program for long- term care facilities and providers to conduct screening and criminal and other background checks on prospective direct access patient employees.
Advancing Research and Treatment for Pain Care Management - Authorizes an Institute of Medicine Conference on Pain Care to evaluate the adequacy of pain assessment, treatment, and management; identify and address barriers to appropriate pain care; increase awareness; and report to Congress on findings and recommendations. Also authorizes the Pain Consortium at the National Institutes of Health to enhance and coordinate clinical research on pain causes and treatments. Establishes a grant program to improve health professionals’ ability to assess and appropriately treat pain.
Education and training programs in pain care - Secretary may make grants available to hospices and others to develop and implement pain care education and training programs for health care professionals.

While we appreciate the fact Congress continues to embrace hospice as a vital part of health care at the end of life and we’re pleased to see the provisions included expanding access to hospice, we simply can’t afford to lose $7.8 billion from the national investment in end-of-life care. We have said it all along; two cuts are too much for hospice. And, we mean it. The productivity cuts on top of the more than 4 percent regulatory reduction associated with the elimination of the budget neutrality adjustment factor (BNAF) we are absorbing over the next seven years, is more than the community can or should sustain. The hospice community was a resource to Congress during this trying past year."

NHPCO will continue to advocate on our behalf. The next step is Capitol Hill Day: April 21st. You can visit the Hill Day 2010 Information Page for more information and to register. They're also gathering

facts to show Congress what the cuts will mean to the hospice programs that serve their communities and constituents. The rest? We'll just have to wait and see.

Return of the Dog Whisperer

2010-03-26T18:43:00.002-05:00

Sometimes I bring out the best in people and sometimes I bring out the best in dogs. A man with Alzheimers came on to our service over the summer but the family refused social worker or chaplain involvement. The hospice RN let us know last week that the family was now open to these services- hurray! I met with the daughter and the caregiver the other day. The patient is nonverbal and content to stare outside. I did get some kind of response from him when I mentioned the White Sox' 2005 World Series Championship- he and the family are huge Sox fans so we, of course, got along swimmingly. Also in the mix were the family's 2 dogs: JD and Comiskey. JD was very friendly and eager to be petted. Comiskey is the timid one but surprised the family by coming into the patient's room after we'd been visiting awhile. I held out my hand to encourage him but the daughter was worried Comiskey would freak out and bite off my hand (apparently timidity can also translate to ferocity) so she sent him out of the room. A little while later he came back in, headed straight for me and rubbed his head under my hand, indicating he'd like to be petted! The daughter was shocked! Comiskey was friendly as could be. She said that he's never done that before- he never comes into the room and never lets strangers pet him. Interesting, no? I seriously don't think I do anything special but Comiskey must have sensed I was a kind soul- or at the very least, a Sox fan. Speaking of which, when baseball season starts, I'm going to try to visit during a day game and see if the patient responds to baseball.

Hips

2010-03-25T20:50:00.002-05:00

In the last few months, we've had a rash of patients who have fallen and broken their hips. Is something in their water? None of the falls could be prevented (outside perhaps a drastic personality change in the case of some stubborn souls.) Only one family opted for hip surgery; recovery does not look so great. In one case, the family would have opted for surgery but the patient would not have made it through because of their cardiac issues. The other families chose to keep the patient comfortable with medication. In general the patient died a few days later. I know this is not a decision any family would want to make. On the flipside, why would you put your loved one through surgery and rehab when they already have a life-limiting prognosis? I didn't mean to get on my "quality of life" soapbox but there you have it!

Role Reversal

2010-03-23T18:19:00.002-05:00

I've shared stories in the past about patients or families who have deemed me "too young" and requested a different social worker. I am proud to say I have reached the other side! Well, at least for one family. I met with a new patient and his wife, both in their 40s, the classic sandwich generation. They have young kids and parents with health problems. The wife was very apologetic as she asked if they could have a different nurse. They felt she was "too old" and didn't understand the issues they are dealing with. For instance, they know you need to keep ahead of the pain with medication but the patient doesn't want to be conked out all day and miss out on time with his kids. They felt like the nurse dismissed their concern. Granted this RN is in her late 60s or early 70s and usually provides great care but in this instance, she did not appear to hear what the family had told her during the first visit. As I listened to their side of the story, I was secretly a little giddy that I'm an "appropriate" age for this family! Long story short, they now have a RN that is closer to their age, who also has kids at home. And they really liked me and felt like I had a good understanding of their concerns. I'm going to start meeting with the kiddos next and see what kind of support I can offer them.

Remembrance Poem

2010-03-20T14:45:00.002-05:00

It can be hard to decide what to do on the anniversary of a loved one's death. Some people want to treat it as a normal day, others want a memorial service, and the rest of us fall somewhere in between. A helpful practice I've found is to simply light a candle and read a poem of remembrance, either by myself or with others. It is a way of marking the occasion, taking a moment to honor your loved one and the loss you've experienced. I've passed out the following Jewish remembrance to my bereavement clients and to friends and family alike.

We Remember Them- Jewish remembrance

In the rising of the sun and in its going down,
we remember them.

In the blowing of the wind and in the chill of the winter,
we remember them.

In the warmth of the sun and the peace of summer,
we remember them.

In the rustling of the leaves and the beauty of autumn,
we remember them.

In the beginning of the year and when it ends,
we remember them.

When we are weary and in need of strength,
we remember them.

When we are lost and sick at heart,
we remember them.

When we have joys we yearn to share,
we remember them.

So long as we live, they too shall live, for they are now a part of us,
as we remember them.

Geriatric Social Work Initiative

2010-03-19T17:31:00.003-05:00

The Geriatric Social Work Initiative has a wealth of information for those working with older adults and their families. They are collaborating with social work programs to better prepare social workers working with this population. There's also a Faculty Scholars Program, Doctoral Fellows Program, and Doctoral Fellows Pre-Dissertation Award Program. They also post the latest research and information in the field of gerontology.

Hope and Empowerment Event

2010-03-19T17:09:00.003-05:00

I learned about this fantastic event earlier this week but haven't been around to post anything since my explosion of posts on Tuesday. It's either fast or famine with me, apparently. If you're near Indianapolis this weekend, consider attending Hope and Empowerment, a free event through the Henry Tucker Foundation for those affected by pediatric cancer. Tonight features an early screening of the movie "Letters to God" which opens April 9. I hadn't heard of the movie yet but it sounds fantastic. It's about a young boy with cancer who writes daily letters to his penpal, God. A postman comes across the letters and, not knowing what to do, befriends the family and tries to figure out how he should respond. "Inspired by a true story, Letters to God is an intimate, moving and often funny story about the galvanizing effect one child’s belief can have on his family, friends and community." There's a host of great speakers filling up the rest of the weekend. I wish I could go myself but it's my best friend's 30th birthday so, as one who has gone before her, it is my duty to help her break it in.

Is long term care insurance a scam?

2010-03-16T13:39:00.005-05:00

I've worked with a few families in the last year that have had long term care policies. In theory, long term care insurance provides the ability to pay for home care or assisted living costs and protects loved ones from the burden of caregiving. Just like any insurance policy, you hope you'll never have to use it but it's better to be safe than sorry. The Long Term Care Insurance National Advisory Council has good information on statistics, policies, and more. They include this fact: "In 1994, 7.3 million Americans needed long term care (LTC) services at an average cost of nearly $43,800 per year. By 2000, this number rose to 9 million Americans at nearly $55,750 per year. It's currently near $75,000 per year. By 2030 those needing LTC will skyrocket to 23+ million Americans, with projected, individual long term care costs reaching $300,000 annually per individual!" However, this does not account for the number of family caregivers who either choose to care for their loved one or cannot afford in-home care and do not want to place them in a nursing home. This also does not compare usage of hired caregivers vs. nursing home vs. assisted living placement. Anecdotally, it is less expensive to hire a 24 hour caregiver than it is to place someone in a nursing home; people tend to do better in their own home out of familiarity.

People spend years paying their LTC insurance premiums, with the premiums increasing due to age or higher percentage of claims. What happens when they finally want to access care? My experience has not been good because of the many limitations and paperwork. It seems, in the end, that long-term care insurance is just like any other type of insurance company. In order to be compensated, the patient must qualify according to the insurance company's qualifications. They look at 6 of the Activities of Daily Living, including bathing, dressing, eating, toileting, incontinence, and transferring. If a person can do these things, then their claim will not be paid. I had a patient with cancer that could do all six, some days better than others, but was at a higher risk of falling; the insurance company would not agree to coverage even though she needed care. Finally, once she needed assistance with transferring, they agreed to 6 hours a day, 3 days a week. Anything outside of that, the patient would have to cover. When I say that they covered those 18 hours, I mean they covered the maximum daily benefit and the patient was liable for any additional costs. Most policies will cover up to $50-100 per day (the national advisory council says the maximum daily benefit can go up to $400 but I would imagine you pay through the nose for that policy!) You are then responsible for the rest. There are often limited benefit periods as well so if you need care for more than the 3 or 4 years in your policy, you are again on your own.

Let's say that you're fine with the limitations of your policy. It's time to access care. Here are your choices. You can hire a caregiver through an agency. That means you can't hire anyone privately- just a licensed and bonded agency. The agency must provide a plan of care and fill out at least 1 portion of your claim paperwork. In my area, agencies seem to have less 24 hour caregivers or are pushing families to hire 2-12 hour caregivers instead, which drives up the cost. This is another consideration because it'll be a greater out-of-pocket expense. Or you can go to a nursing home, which the policy may reimburse at a higher maximum daily rate. Or you can go to an assisted living facility...for a little while at least until you need a higher level of care, in which case you're right back where you started. Any residential group homes are excluded because they do not have the type of licensing required by insurance companies. This is a true pity because those places have some of the best caregivers and often wonderful, homey environments and opportunities for socialization.

Once you've decided which option best suits you, the paperwork parade begins. You'll mail in your initial claim generally after the first month of care but it could be another 60-90 days before you'll receive your first reimbursement check. So you'll need to have more money upfront in order to pay for the care you need.

Recently I went over a patient's long term care plan with her daughter; the patient had a long term care insurance policy. The patient could no longer live independently but she had a small dog so nursing home placement was out. The daughter decided to look into hiring a caregiver and as she made phone calls, she found out the insurance company would pay $50 a day, barely making a dent in the cost of a caregiver. The daughter wasn't satisfied with the caregiving agencies she spoke with. A friend told her about a group home in the area; the daughter visited the group home and loved it- plus they agreed to take the patient's dog too! She spoke with the insurance company but they would not reimburse care because the home doesn't have the "proper" license. The daughter decided they will just pay privately anyway. This patient is lucky in that she has a good retirement account and can afford to pay privately. Many people are not in the same position.

Now I'm not saying you shouldn't look into long term care insurance. LTC insurance is recommended for anyone over 40. I'm sure it works out perfectly well for some people. I think the costs and limitations need to be considered. Personally I would recommend you start a separate account or CD and deposit your "premium" there instead. That way you can access care when you need it and you can choose whatever option works best for you, not the insurance company. And if you never end up using the money, I guess it'll be a nice inheritance for your family.

Has anyone had a positive experience in accessing long term care insurance? Do you have your own policy?

Katie's Comforters Guild

2010-03-16T13:02:00.002-05:00

I just stumbled across an awesome opportunity for anyone living in Seattle or who'd like to financially support a good cause. Katie's Comforter Guild brings comfort to sick children at Seattle Children's Hospital by making handmade blankets for them. The guild's inspiration is Katie Gerstenberger, who was a patient at Seattle Children’s Hospital, and sadly died in August 2007. Her mom's handmade blanket from home was a great comfort to her during her treatment for cancer. You can help by sewing, knitting, crocheting, or making fleece blankets. Due to infection-control issues, only newly-purchased, newly-made items can be accepted- that means no used blankets or materials. You can deliver your blanket to SCH's Volunteer Office or mail it there; look at the blog for more information. Donations or gift cards (preferably to national chain fabric stores) are also appreciated.

The guild's president is Katie's mom, Karen, who has a personal blog. In the little I've read so far, I have been impressed by her honesty and vulnerability regarding her grief over the loss of her daughter. Consider this post on transforming pain lest you transmit it to others. I would hazard a guess that this is partially how Katie's Comforter Guild came to be. She also writes a sweet letter to Katie on what would have been her 15th birthday.

Happy Social Work Month!

2010-03-16T11:26:00.002-05:00

In honor of Social Work Month 2010, here's a fantastic post by Ken Covinsky at GeriPal that explains why Social Worker Are Awesome. I wish it was required reading for everyone in the medical system! Be sure to tell the social workers around you that you appreciate what they do and that they're a vital part of the team. We eat that stuff up!

Complicated Mourning conference

2010-03-13T10:02:00.006-06:00

I thoroughly enjoyed my time in Ft. Collins, CO at the beginning of the month. Alan Wolfelt was exceptional, as always. "Understanding and Responding to Complicated Mourning" exceeded my expectations- so much good information to process! The training was not held at The Center for Loss and Life Transition this time. I had so been looking forward to the peaceful retreat but there is some construction going on in the area so we met at a conference center instead. When Kerri emailed about the change in location, I pictured some cavernous room that would not be conducive to learning, at least not in line with Alan's vision for these trainings. However, we were in a small room, complete with an eating area. It may not have been the Center for Loss but it worked well for our group. It turns out that it's the people that make the training, not the location! Alan keeps the trainings small so there were 16 of us, including a woman who was at the Comprehensive Bereavement training I attended last May. Such a variety of backgrounds! I think I was the only social worker- there were hospice volunteers, chaplains, bereavement coordinators, and even a nurse. And there was even someone my age this time! I'm so used to being the "young'un" wherever I go. There's such a sense of intimacy in these groups because of what we do but also the stories we share. Alan creates a safe place for us to share not only our personal losses but also the teaching moments with the clients we serve.

Some take-aways from the training itself:
Alan uses the term "Complicated" instead of Abnormal, Pathological, Atypical, or Unresolved when it comes to grief. Complicated is a hope-based term, whereas the others indicate something gravely wrong and unlikely to change. Grief, as a reminder, is an internal process and by it's very nature is complicated. Mourning is an external process, or "grief gone public," and influences change and movement. If someone is unable to mourn a loss, for whatever reason, their grief often becomes complicated.

The factors that naturally influence complicated mourning are the circumstances of the death, survivor's psychological traits (i.e. personality), survivor's relationship with the person that died, survivor's inability to express feelings (grieve but don't mourn), and family systems issues.

There are 4 categories of complicated mourning. In Absent Mourning, no apparent feelings of grief are expressed, often resulting in emotional, physical, and spiritual turmoil. In Distorted Mourning, a heightened response occurs in one of the normal dimensions of grief and does not soften over time. Anger, guilt, depression, and anxiety are the most common. With Converted Mourning, the person attempts to go around grief, instead of through it. The person may demonstrate behaviors and symptoms resulting in personal distress but are unable to trace their presence to the loss, based on whatever "avoidance response style" they are using. This may be due to our mourning-avoidant culture, a high need for self-control, lack of long-term support, or an intolerance for pain or feelings of helplessness. Hurting is part of healing; if this is suppressed, absent mourning occurs. In Chronic Mourning, the acute symptoms of grief do not change over time and there are conscious or unconscious efforts to keep the dead person alive. This is often inappropriately applied to people- some denial can be normal and healthy when a loss occurs. We tend to dose ourselves while mourning a loss- a little bit of pain here and there as integrate the loss in to our lives.

Dying to learn more? Go to a training for yourself! Alan and his staff seriously pamper everyone who comes to a training. It truly is a nice getaway, combined with an excellent educational experience. Sadly, Alan may not continue these trainings past this year so it's best to sign up for the trainings left in 2010. Go to the Center for Loss website to see the training schedule and find out if any spots are left. I'd love to go to a couple more trainings but I'm not sure I'll have time or money to get back before the year ends. Personally, I'm praying that Alan will figure out a way to continue doing this one way or another. If you can't go, then at least check out Alan's many, many books- a virtual treasure trove of information. I was particularly impressed with one of his latest: Healing Your Grieving Body: 100 Physical Practices for Mourners. It's filled with soothing tips.

Article

2010-03-08T17:40:00.002-06:00

A thought-provoking article from Patheos: William Stuntz, a professor at Harvard Law School, discusses the impact of faith in his life. He has had chronic pain since 1999 and was diagnosed with cancer in 2008, now not expected to live through this year. I did not catch any mention of hospice but I hope he has the support of a hospice team, especially since he stated, "cancer deaths are ugly, and I assume mine will be ugly and painful and very, very unpleasant"- yikes.

Some of my take away quotes:

"These conditions, both of them, become very quickly a part of one's identity. Chronic pain and cancer are not just things that have happened to me. They are things that I am. Part of me rebels at that. I want to be more than a cancer patient and chronic pain patient. But I cannot be less than a cancer patient and a chronic pain patient. Those are large parts of my life. They are part of who I am. Although I would love to have my pain and my cancer removed tomorrow, that would not be an easy thing. I would have to learn how to be somebody else. If God decided simply to free me of these conditions, I wouldn't just wake up in the morning and be deliriously happy. It would be a struggle. These things have been a part of me, a part of who I am. I have learned how to live alongside them and through them. Then I would have to learn how to live without them. I wouldn't know how to do that anymore."

"I will probably not survive 2010. Yet that message is much easier to take than I would have expected. I don't fully understand why. I would have thought that the knowledge that I am very likely in my last year of life would lead me to dwell on the dying. A certain amount of that is unavoidable. Death hangs in the air. It's as though I am living with an hourglass right in front of my face. You cannot look away from it. You cannot close your eyes to it. It's always there. But actually I think it has led me to dwell more on the living."

"It hurts when my wife becomes sad because she wanted us to grow old together. We are not going to grow old together. She feels anticipated pain over my coming death, and seeing her feel the pain of that, that's hard."

Palliative Care Grand Rounds 2.3

2010-03-07T13:42:00.000-06:00

Larry Beresford has posted the latest edition of Palliative Care Grand Rounds. PCGR is always chock full of good info and blogs related to hospice, palliative care, and bereavement. Enjoy!

In Honor of Spring Training

2010-03-06T14:52:00.005-06:00

I love finding a connection between work and baseball. A Chicago Tribune article last summer alerted me to the latest in eternal resting places. We all know I'm not a Cubs fan but I have to give props to Beyond the Vines for creating "eternal luxury skyboxes for Cubs fans." The 24-foot-long brick monument, located at Bohemian National Cemetery, is designed to look like the ivy wall at Wrigley and holds 280 niches, aka eternal skyboxes, and the MLB-approved urns have the Cubs logo on them.

We White Sox fans might not have our own version of Beyond the Vines but I think this story is even better. My good friend Brooke was blessed to be born into a family of die-hard White Sox fans. Her dad Tom never missed a home opener until he died during our sophomore year of college, a little more than a month before the 2000 season was to begin. That's when I started going to the home openers with the family, in his honor. The White Sox organization sent a special letter to Brooke's mom acknowledging the loss of a super fan and also paid tribute with a message on the scoreboard during the 4th inning. Fast forward to 2005. After congratulating ourselves on having partial season tickets for an incredible year of baseball playing, Brooke and I tried our hardest to get tickets to the World Series but didn't get through on Ticketmaster and neither of us could afford the scalpers' prices. However, her uncle managed to be invited by a friend. Before Game 1 started, he surreptitiously spread a little bit of Tom's ashes on the field for good luck. And what do you know? We won that game and continued on to sweep the World Series! (Note: In general, it's a good idea to ask permission before spreading ashes on private property or in public places; if you don't have it in writing, it could be considered a misdemeanor. White Sox officials were notified about Brooke's uncle's actions when the Chicago Sun ran a World Series-related article. As I recall they didn't seem too stressed about it but they also didn't want a mass spreading of cremated remains either. Other interesting places people spread ashes.)

You might want to shake your head and say, "only in Chicago" but, actually, the Phillies' urn was the first to be designed. People have been tying their final arrangements to their baseball (or football or basketball or...) allegiance for years. It only makes sense that someone would capitalize on this service. Do you know of any other sports-related memorial stories?

Free at Last!

2010-03-02T19:00:00.003-06:00

A new patient was admitted one night and I planned to see her that morning since it sounded like she might only last a few days. However, you know what happens to the best laid plans. The hospice CNA was visiting and let the hospice RN know the patient was a few breaths away from dying. I arrived at the facility to find out the patient had indeed died; they were in the process of notifying the family. The daughter came to the room shortly thereafter and went straight to her mom's bedside.

"Oh, Mom- you did it! You're finally free!" She was tearful but smiling. Not the reaction you might expect but as I learned more about the patient and her loving family, it was so fitting. The patient had Alzheimer's and per the family, her quality of life was very lacking. The patient had watched her sister die from Alzheimer's 10 years ago and thanked God that she seemed to have escaped that fate. Only it was not to be and the family watched in horror as a once vibrant woman became lost and confused. As the family gathered, they all echoed the sentiment that this woman was finally free of her diseased and dying body and now in heaven with a perfect body.

Update

2010-02-24T17:37:00.003-06:00

This Sunday I head back to the Center for Loss and Life Transition in Ft. Collins, CO for another bereavement training. My laptop is on the fritz so I won't be able to post until I'm back in town- hopefully my laptop will be healthy by then!

If time and my memory permit, I'll have to tell you about the on-call visit on Sunday with a bedside singing family and Monday's daylong visit for the death of a patient. Yep, it's been one of those weeks where I know I'm helping people and making a difference.

On another note, I've come up with a goal of reaching 50 followers for this blog. I've come a long way from the days when just a few friends and family frequented here. I'm honored by the comments and emails that let me know this blog has been a good resource or has opened their eyes to end of life issues. I'm at 40 now (and at 37 when I first wrote this goal down!) so if you'd like to keep up with my posts, click on the Follower tab to the right. Thank you!

And stay tuned for a big announcement in the coming months...any guesses?

Confusion

2010-02-18T21:02:00.002-06:00

Two stories related to patients with Alzheimer's:

1. "Raphael" lives on a Memory Unit at an Assisted Living Facility. He was a Ladies Man back in the day and yearns for those days. He often expresses sadness about his inability to have "hoochy koochy"- his wording, not mine. He seems harmless but I usually do joint visits with the hospice RN just to be on the safe side. One recent visit he was sitting in the common area with another resident "Wanda." Wanda was quite jealous of the hospice RN, whom she believed was trying to take "her" man away from her. Wanda would turn to Raphael and ask "Am I your girlfriend?" He would try to answer diplomatically, often telling her that his wife was his first love and only girlfriend. A minute later Wanda would ask "Are you my boyfriend?" Then "Are you cheating on me?" And then back to "Am I your girlfriend?" Then she would intersperse comments to the RN, whenever she thought Raphael was getting a little too close or just to state her territory. I wish I had a transcript because it was one of the funniest things ever.

2. The patient is a woman with Alzheimer's. Her husband has the disease too but is still ambulatory, conversant, and functions relatively well despite his confusion and tendency to wander. He is not clear on what is happening to his wife. She is close to actively dying. Their children have certainly been through a lot in watching their mother's decline and knowing what lies ahead for their father. I talked to the daughters for some time at the patient's bedside. Her husband came back into the room and lay down on his twin bed, which is next to her hospital bed. He seemed worried, he knows something has changed. He asked a few questions about his wife, mostly concerned with whether she had eaten or not. Then he lapsed into his own world. But for those few moments, all you could see was a man in love with his wife.

Self-Care Update

2010-02-12T21:35:00.002-06:00

I confessed a while back that I had become burned out. Some of you made helpful suggestions and asked me to write out a self-care plan. I had the best of intentions of sharing my self-care plan with you all but somehow life carried on, I was refreshed, and it got lost in the shuffle. However, I just completed an e-course that has helped me in so many ways that I can't help but share it with you all.

Shannon Kinney-Duh created the month-long Inside Out e-course. I liked the premise of using art and journaling as a means of self-discovery. Five days a week there are daily writing, art and creative play exercises. The writing exercises really help us in examining our strengths, passions, and the direction we want our lives to take. But it also helps us to enjoy the present moment, to be still, to breathe. The course also has weekly guided meditations and yoga tips. One neat aspect is our private class blog and Facebook group.

I've always had a creative side but since grad school, I've been lax about expressing that side of me. One of my intentions when I started the e-course was to figure out a place in my apartment where my art supplies would be more accessible. They were in the back of my closet, which was a handy storage space but did not promote actually using anything. Since I live in apartment, there's not a lot of free space but the supplies are now next to my stereo where I used to keep paper waiting to be recycled. Success! I have realized all over again my joy in painting, doodling, and sketching. And more importantly, this is a huge stress reliever! I had completely forgotten how relaxing it was to create. I learned many other things through Inside Out but that's for another time and another place. My challenge to you is to consider whether art and/or journaling can find a place in your self-care routine.

The next Inside Out e-course starts April 5. Registration opened February 4. I would highly encourage you to give it a try no matter what your background is, no matter how creative (or uncreative as the case may be) you may be. You can email Shannon with questions at livefreely @ mac dot com. The video below has highlights of some of the class member's journal pages and our group manifesto.

Babette's Scarf

2010-02-09T15:13:00.003-06:00

I've had the pleasure of knowing "Babette" for a few months now. I usually visit with her for a couple of hours and send her daughter and son-in-law out to run errands or just spend time with each other outside of their home. Babette has an amazing life story and I love soaking in her wisdom. Confidentiality prevents me from telling some of the more unusual aspects of her life, unfortunately. She immigrated from eastern Europe when she was a teenager; her father was already in the US and sent for her. When she arrived, she found out that he had died. Can you imagine being in that predicament? The precursors to WWII were starting back home so she couldn't send for the rest of her family either. She met and married her husband, who then joined the military and fought during the war. She raised her family, weathering several losses. She has a truly positive attitude. She is accepting of her decline and feels ready to die. Last week, in fact, she told me when she goes to bed at night she hopes she won't wake up and that she is disappointed when she wakes up in the morning. Babette had a bit of adjusting to do when she first became ill; she felt a lack of purpose. She was used to working on projects and staying active. When I first visited, she told me she didn't want to start something and then get too sick to finish it. However, it didn't take much to convince her to start out slow and pay attention to what her body was telling her. Her daughter helped her with some sewing projects and Babette started crocheting again.

There was a few week gap between visits while I was on vacation because of the way my trip fell. When I returned from North Carolina, Babette was so happy to see me. She told me to go out to the kitchen and get her the scarf. I thought she was cold so I found the scarf and brought it in to her room. She told me she had made it for me! Babette crocheted scarves for the hospice RN and volunteer as well, plus one final scarf for her daughter. She said mine was the second to last scarf she made and she knew her crocheting days were done, her hands were too stiff now. She said she and her daughter had been paying attention to what clothes I wore each week so they could pick the right color. How sweet is that? She finished it while I was in NC and then anxiously waited for me to come back so she could give it to me. I've worn it just about every day since she gave it to me last month. Such a precious, warm gift.

Unexpected

2010-02-07T08:34:00.003-06:00

I've written before when a patient "surprises" us by not following the normal end of life trajectory. There are signs and symptoms that death is getting nearer, even up to a few months before a person dies. We, as hospice professionals, note these changes each visit and prepare the patient and family for what is going to happen. Every once in awhile, the unexpected happens. You may be talking to the patient, nothing appears amiss and two hours later, they're dead. My experience Friday takes the cake, however.

The lady had only been on our program for a couple of weeks. In fact, I hadn't met her yet because her POAH was going to be out of town and they wanted to delay our first visit until next Tuesday, when another friend would join us. The patient had no children but had a group of friends that were like family to her. On our first visit we were going to talk about Advance Directives, long-term care planning, and all that good stuff. She was in no way imminent and was living at home independently. I happened to be with the hospice RN when she got the call from the office. The patient's POAH "June" was back and supposed to take the pt. to a doctor's appointment that morning but "Magda" wasn't answering the door. She had gone around the back of the house and could see that Magda was slumped over in her chair. While June waited for her husband to bring the spare key, the RN and I headed over. When I arrived, it was confirmed that Magda had died. Her friends had spoken with her the night before and nothing was different. They expected this morning would go smoothly with the doctor and then they were going to finish taking down the Christmas tree decorations, which Magda decorated magnificently and always kept up through at least the end of January. June could not have guessed that the last time she would see Magda face to face would be before she went out of town last week.

Magda looked absolutely peaceful. She had her make-up on, which her friends said was a daily custom. She was drinking her morning coffee. We won't ever know what she died of but it didn't appear to cause her any pain or discomfort. June and her friend "Betsy" found comfort that Magda died so unexpectedly. They said Magda would have had a hard time letting a hired caregiver take care of her whenever it became necessary. Magda always took care of everyone else and could be private about her own business. We sat and talked about Magda's life while we waited for the funeral home, which Magda had pre-arranged several years ago. She sounded like a firecracker of a lady. I would have enjoyed getting to know her but for her sake, I'm glad we'll never get to meet.

Confronting God

2010-02-06T11:00:00.003-06:00

Earlier this week I went to meet with the family of a new pt. He was in his 40s, just diagnosed with the nasty glioblastoma in December and now on hospice. He had 2 teenage children and a wonderful wife, as well as a huge network of support from his extended family, friends, neighbors, and church. This was a man who was dearly loved by all who ever met him. He was mostly unresponsive the day I was there and his wife knew it was a matter of time. She talked about how blessed they have been by the help they've received from their community: prayers, meals, fundraisers. She talked about how strong the patient's faith is, how it has grown even stronger as he has declined. He is minutes from heaven where he would meet God and where there is no such thing as glioblastoma, pain, or tears. Then she said, "And me? I just want to kick God in the balls." Imagery aside, I don't think these emotions are incongruous with faith.

The fact is we live in a fallen world. We live with war, disease, and the depravity of mankind. Most of us don't live with those realities on a day to day basis, outside of the occasional cold and jerky coworker. When something truly bad does happen, we are caught off guard even though we're not promised easy "get everything you want" lives. When you're basically content, it's not hard to believe that your life will continue going on that way. A terminal illness, of course, drastically changes one's outlook. We are forced to grapple with what we believe. I believe it is OK to question God because He desires a relationship with us. He wants to dialog about our lives. He wants to know what we're thinking and feeling. So when this wife talked about wanting to kick God in the balls, I thought, "what a perfect expression of her anger and helplessness." She didn't believe that God caused the cancer but she was angry that their prayers hadn't taken it away. She could still talk about God's goodness and faithfulness but that didn't negate her anger about losing her husband. I'm glad she felt free to express herself. We may never understand why bad things happen but God knows and He will use all things, no matter how awful, for good (Romans 8:28).

Palliative Care Grand Rounds 2.2

2010-02-04T21:26:00.001-06:00

Alive Hospice is hosting the latest edition of Palliative Care Grand Rounds. Jared found some great new additions to PCGR so be sure to check it out!

Oscar

2010-02-02T22:07:00.003-06:00

Meet Oscar the "Death Cat." Please don't think of him as a furry grim reaper; he's been thanked by families in their loved one's obituary for the comfort he offered during their final hours. Oscar is a therapy cat at Steere House Nursing and Rehabilitation Center in Providence, R.I with an uncanny knack for predicting when nursing home patients are going to die. The facility cares for people with dementia and in the final stages of various illnesses. Oscar seeks out the dying, snuggling with the patient and family members until the patient passes; with others, he smells the patient's feet, sits outside a closed door until admitted, or refuses to leave a dying patient's bed. Since nursing staff first noted Oscar curling up with residents before they died, he has accurately predicted about 50 deaths. Dr. David Dosa first published an article about Oscar in 2007 in the New England Journal of Medicine and is now releasing a book 'Making Rounds With Oscar: The Extraordinary Gift of an Ordinary Cat.' Dosa notes, "I don't think Oscar is that unique, but he is in a unique environment. Animals are remarkable in their ability to see things we don't...Animals know when they are needed."

Poll results

2010-01-31T13:49:00.001-06:00

Thanks to all who voted in the poll.

The top 3 vote-getters were:
1. Patient/family stories
2. Social work/therapeutic techniques
3. Bereavement work

After Words

2010-01-29T11:59:00.002-06:00

Losing a loved one is difficult no matter what the circumstances. When a life limiting prognosis is known, it is helpful to make funeral arrangements ahead of time. However, important financial decisions do not end there. This list is a road map of basic actions you or a designated third party will need to take during the first few months after the death of a loved one.

1. Collect the Necessary Papers

Death certificate. The funeral director will provide a certain number. You can purchase additional death certificates through the funeral director or the county health department. At least a dozen certified copies of the death certificate is recommended. Most companies will want a certified copy but use a photocopy when able to save money.
Marriage certificate. Available from the county clerk where the marriage license was issued.
Birth certificate(s). For the deceased and any dependent children. Available at either the state or county public records office where the person was born.
Social Security number(s). For the deceased, spouse, and dependent children.
Discharge papers. If the deceased served in the military, a copy of the discharge certificate is needed. If you do not have a copy, contact National Personnel Records Center (9700 Page Boulevard, St. Louis, MO 63132-5200), at the attention of the branch in which the deceased served.
Original will. The lawyer who wrote the will may have it or it may be with the personal belongings of the deceased or in a safe deposit box. Be aware that some banks have special procedures before letting anyone in to the safe deposit box.
List of property. Complete list of what the deceased owned including real estate, stocks, bonds, bank accounts, deeds, and personal property.
Recent income tax returns. If the most recent income tax return cannot be found, you'll need to fill out IRS Form 4506. There is a $57 fee. You'll also need to attach documentation that you are authorized to act on behalf of the deceased, such as letters from the probate court.
Find bankbooks or account statements, stock certificates or investment account statements, and insurance policies.

2. Contact Insurance Companies

Contact each insurance company to notify of your loved one's death and find out how to claim the policy benefits. Ask what forms will need to be filed.
Each company will need a statement of the claim and a death certificate before the surviving spouse or dependent children can receive benefits. Keep copies of all correspondence. If you speak with a claim representative by phone, note the representative's name, date and time that you called, and what was discussed.
In addition to life insurance, find out if other forms of insurance covered the deceased. Some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances. Notify these companies immediately.
If you can't find the individual policies among the deceased's papers, look at the checkbook or paycheck stubs for premiums paid.
Generally, life insurance proceeds are paid directly to the named beneficiary. Most companies offer to pay the benefits in a lump sum or as fixed payments over time.
If the deceased was listed as a beneficiary for your own policy, you will need to change the listed beneficiary.
Policies on properties and autos should be changed to the survivor or heir's name.
If medical insurance was formerly obtained through the deceased's employment, find out immediately if you are still covered and for how long. If you are no longer covered, ask about options open to you now.

3. Notify Social Security

You will need to contact Social Security if the deceased was already receiving Social Security benefits. If a Social Security check arrives after your loved one has died and it is payable to the deceased only, it must be returned. If it is made out to the deceased and surviving spouse jointly, take it to the Social Security office so that it may be stamped "Payable to Survivor."
There is a one-time Death Benefit of $255 on the worker's record, payable to the deceased's widow or minor children.
Survivors Benefits may be available to the surviving spouse, dependent children up to age 18, and in some cases dependent parents (over age 62, you must provide at least half of their support.)

4. Claim Benefits

Veterans benefits. The VA provides burial benefits, including a grave at a national cemetery, the opening and closing of the grave, government headstone or marker, and burial flag. Cremated remains will also be buried or interred. The deceased may also be eligible for a burial allowance. For information on benefits, including those for surviving spouses, contact the Veterans Administration at 1-800-827-1000. Forms can be found at http://www.va.gov/vaforms/.
Employee benefits may be available; check with the deceased's employer.
Unions and other professional organizations provide benefits as well.
Social Security Death Benefit. See above.

5. Begin probate if needed

Probate is the court-supervised process of paying the deceased's debts and distributing the estate to the rightful beneficiaries. It may take up to a year to complete so attorney may be helpful. Jointly owned property, property in trust, and assets with a designated beneficiary (i.e. life insurance, 401(k), pensions) do not go through the probate process. If the will is relatively few assets, debts, and only one heir, it will probably not require probate.
If the deceased did not have a will, state law determines how the assets and property will be distributed to family members. The court will appoint a personal representative or the executor to manage the deceased's affairs. Contact the probate court in the state where the deceased lived for details.

6. Additional Details

Advise all creditors in writing of the deceased's death. This includes credit card and loan companies. Remember, some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances.
See a tax accountant or lawyer. Federal law often requires that an estate tax return be filed within 9 months of the death. Since tax laws are constantly revised, seek out expert service to find out the full tax liability. The surviving spouse may still file a joint tax return noting the deceased's spouse's death that year. The surviving spouse may also claim the death benefit exclusion on the income tax return.
Notify banks to change the name to the survivor's only. Ask the bank to release joint bank account funds to you. In some states, joint bank accounts are automatically frozen upon the death of one spouse. If the account is in the deceased's name only, no one may access it until an administrator is appointed.
Notify retirement plan administrators of the deceased's death.
Change the title on joint assets. Revise your will.
If you have dependent children in college, ask them to visit the financial aid office. They may be eligible for increased aid.
Motor vehicle. One vehicle is automatically the survivor's property but when the registration expires, you will need to bring a copy of the death certificate, vehicle title certificate, and new insurance form in your name to the Department of Motor Vehicles. They will supply the necessary forms to fill out. Any additional vehicles must go through the estate.
Stocks, bonds, and investments. Notify the broker or banker of the death and ask for any appropriate forms. Leave decisions about investments for later, if able.
Keep a record of any bills paid and funds received. If you need extra time paying current bills, notify the company as soon as possible.
If you have any minor dependents, you must have yourself appointed as custodian of their property, i.e. stocks or bank accounts. The guardian listed in your will should also be updated.
Sale of property. If you are able to postpone decisions about selling, please do. Review all options carefully. Avoid people who want to "make you rich."

Updated list of Hospice and Palliative Medicine Blogs

2010-01-29T11:53:00.002-06:00

Christian Sinclair has updated the list of Hospice and Palliative Medicine Blogs over at Pallimed. Make sure to check them out, comment often, and let Christian know if you have a blog in that category. I personally would love to hear from hospice social workers, chaplains, and bereavement coordinators.

Poll

2010-01-26T21:14:00.001-06:00

Just a reminder that my poll (top right hand of this page) will end Friday. I get way more than 12 hits a day so to all you lurkers...vote! Otherwise you will be stuck with my current posting whims!

New Kiddos and Cremation

2010-01-26T20:51:00.004-06:00

I started working with 2 kids the other week. Their mom met me outside the house when I arrived tonight. She let me know that the prognosis for her husband is now a week. She let me know what the kids knew. She talked about how she was doing. As we shivered outside, I couldn't help but wonder if I will be in her shoes someday. If I ever get married, will I have to deal with then losing my husband early to cancer? Will either of my parents face disease? Will I be the patient? This woman couldn't have imagined when she said, "I do" that she would bury her husband 10+ years later. And there I was trying to offer what comfort I could. My gift to this woman is my ability to be there for her children. It seems that her daughter talked all day about getting to see me again. She also gave me a personalized drawing for my fridge. Neither child wanted to talk much about their dad's decline and I respected that. They are too young to understand the ramifications of what it means to bring a hospital bed in to your home or needing more pain medication. I'm glad that they still have this innocence for now.

The mom was also looking for help in explaining cremation to the kids. I gave some basic guidelines and a copy of Alan Wolfelt's "Helping Children Understand Cremation." I only differ from Wolfelt in that he recommends saying "The heat burns away all the parts of the body except for some pieces of bone." I wouldn't recommend talking about the body burning, as it won't sit well with most kids, even when they are told that the person is dead and being cremated won't hurt them. Instead I would recommend something more along the lines of "The heat turns the body into ashes." If children want more of an explanation, they'll ask for it. Some will want to know more than others and you can tailor your response to their age and level of understanding.

Rainbows Online Facilitator Training

2010-01-23T12:48:00.004-06:00

I recently learned about a new training program through Rainbows, a nonprofit that works with children dealing with death of a loved one, divorce, family member deployment, incarcerated loved one, or another significant trauma. Rainbows began in 1983 in the Chicago area and has since grown to reach over 2 million participants in the United States and other countries around the world.

The Online Facilitator Training Program was designed to train social workers interested in working with grieving children and teens. It's a 5 hour program that can be completed at home or work. Users have 14 days to complete it so if you don't want to complete it all at once, you don't have to. The program has been designed to engage the user and offer a one-on-one learning experience, imparting the Rainbows philosophy and methodology. It also includes a closing examination of learning content. The $125 cost includes a free download of the Facilitator Listening Module. This is a great resource for anyone working with children and teens. I know I'm always looking for new activities and ideas to reach out to my clients.

Included in the training: extensive presentation on grief, instruction on active and attentive listening skills, evaluation of small group sessions and real-life scenarios (streaming video), training in specific areas of interest, interactive exercises and quizzes, and downloadable resources for continued support and training.

Stay tuned for this site's first guest post from Rainbows' founder and a social worker on the board...

Traveling to Provence

2010-01-23T12:28:00.002-06:00

My traveling patient was on the move last night, this time to the French countryside of Provence. I tracked down a wonderful DVD at the library "Visions of France: Provence" and a CD of French music, naturalmente. The patient invited the hospice team, his wife, and a family friend to join him for a Provence-inspired dinner. I whipped up a tarte, rice, and zucchini (recipes found on AllRecipes.com) that had the unifying ingredient: Herbes de Provence. His wife made Shrimp Provencal and a French dessert. The guests brought various French contributions. It was a wonderful evening. The patient was thrilled with his travels but succumbed to jet lag towards the end of the night. Next stop: Mardi Gras!

Hospice Patient Blogger Dies

2010-01-17T22:08:00.002-06:00

It is with sadness that I let you know that Judi, of Life as a Hospice Patient, died last night. She was featured several times in Palliative Care Grand Rounds this past year. We in the hospice and palliative care community are indebted to her for her honesty and willingness to share her experience as a hospice patient. She was an activist throughout her life apparently and this role continued as her health declined. Go to her blog for details on her final hours and where to direct contributions.

On-call visit

2010-01-16T21:25:00.002-06:00

Fresh back from vacation, I've been on-call today since 8 this morning and have10 1/2 hours to go. Not that I'm counting. Since the phone has been quiet the last few times I was on-call, I figured my time was about up. And I was right. The phone rang this afternoon and I answered with resignation. Most on-call visits deal with caregiving needs, a death at a facility (if the RN is busy and a family requests support), or the dreaded emergency respite situation. When I first get called, I dread what I'll be asked to do, mostly because I hate being on-call. However, I'm usually glad that I could help the patient/family once the visit is over. This time when the triage RN called, I breathed a sigh of relief because the situation was right up my alley: a bereavement visit. I met with the widow for over 3 hours and probably could have stayed longer. She just needed to talk. Her husband died yesterday and the reality is hitting her now. I told her about follow up through our bereavement program, ie support group or bereavement volunteer. She said it had been so helpful talking to me, she actually asked if I could be her bereavement volunteer. I explained that I wouldn't be allowed to but I was sure we could line up a great volunteer for her. I walked away knowing that I had made a difference in that woman's life. Think bereavement is my calling?

YourStory, Inc. resource

2010-01-16T12:28:00.003-06:00

Isabel and David Andrews believe that everyone has a story to tell. They began their company YourStory, Inc. in order to preserve those special memories, using the customer's own words and pictures. Options are The Tribute (created through several interviews with people whose lives have been impacted by the tribute subject; a mock newspaper style article is created and comes beautifully matted and framed), Milestones (your reflections on your happiest moments or the situations that made you in to the person you are today are captured in a classically-bound book), and Life Story (an elegantly-bound book is written from three to four hours of in-person interviews; sections can include themes such as childhood, finding your vocation, meeting your spouse, and life-changing events.) The Milestones and Life Story options also include a rough, unedited audio CD of the interview(s). These look like lovely keepsakes, ultimately priceless but perhaps pricey upfront. The owners are based in Naperville, IL and the website does not state how far interviewers will travel; it's safe to assume that most clients are from the Chicago area.

Caseload Recommendations

2010-01-14T20:28:00.004-06:00

I recently wrote about my unusually low caseload, prompting a question from "anonymous" about state regulations on caseload maximums for hospice social workers. I'm not sure that states would regulate our caseloads; if such regulations exist, it seems something more along the lines of NHPCO or Medicare. Correct me if I'm wrong. About a year ago a coworker tracked down the NHO operations manual (from 1997) and copied the page on Productivity and Caseload Issues.

NHO issued the following general guidelines for staffing ratios:

Nursing. Caseload of 8-12 patients per FTE (full-time employee); range of 15-25 visits per week
Social Work: Caseload of 20-30 patients per FTE; range of 15-25 visits per week
Chaplain: Caseload of 40-60 patients per FTE; range of 15-25 visits per week
Home Health Aides: Caseload of 7-10 patients per FTE; visit length ranging from 1.5 to 2.25 hours

Affecting caseloads are the following factors: geographic location/travel time, patient acuity, limitations/stress level of primary caregiver or other members of the immediate family, and the extent of staff roles and responsibilities that conflict with direct patient care time (i.e. IDT meetings.)

The 2009 NHPCO Facts and Figures: Hospice Care in America report: "In 2008, the average patient caseload for a home health aide was 9.5 patients, 13.3 patients a nurse case manager, and 24.2 patients for a social worker."

Are you aware of any other current caseload recommendations? Please let me know!

Since my brief reprieve before Christmas, my caseload has gone back up to around 37 and I know there are a couple more new patients coming down the pipeline. I also have the largest territory of all the social workers (and generally the highest caseload). There was a period a year or two ago that all the social workers were carrying caseloads over 40- the rest of the hospice team's caseloads were similarly impacted. It was too much but the administration said we'd have to keep the caseloads that high for at least a few more months before they would even think about hiring another social worker, much less other staff. Of course, we didn't sustain those high numbers for the required amount of time; we just had to make do. I hated doing that to the rest of my caseload but new and high acuity patients always come first and my sanity last. The ebb and flow of caseloads is an ongoing issue. How do we provide quality care without sacrificing ourselves in the process?

The Big 3-0

2010-01-12T14:42:00.003-06:00

I recently moved out of my 20s and took a trip with my mom to celebrate, hence my delayed posting. While I'm not entirely happy about turning 30 (not because of the age itself but because I'm not where I thought I'd be by this time), I'm determined to embrace it. As you can guess by this blog's title, at the very least I'll never look my age. Hopefully this official age will reassure my patients in the face of my youth.

It's been about a year since I changed this blog from a personal and professional perspective to professional-only. It's been neat to be featured on various Palliative Care Grand Round issues (check out Pallimed for the latest) and gain more professional contacts and readers in the process. I can guarantee that I never thought I'd be in this position when this blog first began. So thank you, readers, for sticking with me.

I've come up with a poll on the top right side of the page. I'd like to see what you all are interested in hearing about. Please take a minute to choose which topic you'd like to see featured more often. The poll will be up all month so do as Illinoisans do- vote early and often. (OK, we don't all do that in this great state but with another primary election drawing near, I couldn't resist!)

While My Sister Sleeps review

2010-01-01T19:13:00.002-06:00

I've never read Barbara Delinksy before but the premise of While My Sister Sleeps was enough to reel me in. Reader beware, there may be some spoilers but I don't think it will detract from your reading. Molly Snow has always lived in the shadow of her older sister, Robin, who is a determined runner bound for Olympic greatness. On a day Molly was supposed to support Robin on a run, tragedy strikes when Robin is found unconscious on the roadside by another runner. After being admitted to the ICU, it is determined that 32 year old Robin had a massive heart attack that deprived her for oxygen for too long and left her brain dead. The family reacts in a variety of ways: her father Charlie tries to be the silent supporter, her brother wants Robin off the life support, her mother Kathyrn believes Robin will come out of this and can't face the alternative, and Molly wants to do what Robin would have wanted, even though she doesn't know what this is (highlighting again the importance of discussing your wishes and filling out Advance Directives at any age.) The novel takes place over 6 days. Secrets are revealed and bonds are tested as the family grapples with difficult decisions and faces letting go.

From the beginning, it is pretty clear that Robin will not survive this. I've never worked in an ICU but this appeared to be a realistic portrayal. The hospital social worker even gets to play a part! My one gripe with that is that when Molly wants to ask about the process for organ donation, the social worker is not available because it's the weekend. The one thing I can figure out is that this is a small hospital so maybe they do not have on-call social workers...but still! Delinsky makes good use of her audience by educating readers on organ donation. The need and value for organ donation is clear and Delinsky takes the opportunity to clear up myths and assumptions. For instance, the nurse points out that great care is taken so that organ donation does not lead to disfigurement.

The mother Kathryn goes from complete denial regarding her daughter's condition to accepting that nothing more can be done. The possibility of keeping Robin on life support is addressed. As a runner she was used to being a vital, energetic person. They come to see that Robin is no longer with them, just her body, a shell. Still, it's not an easy decision. Consider this conversation between Kathryn and Charlie:
"It's the cost of having a life worth living. Choices are easy when you have nothing to lose. Would you rather have led that other kind of life?" She was feeling perverse enough to say yes, when he added, "You couldn't do that, Kathryn. It's not in your nature. I've always loved your determination- the wholehearted way you go at things."
"But now I'm giving up," she said in self-reproach. This was the frightening part of accepting what was happening. Giving up was a betrayal.
Charlie answered with startling force. "No, Kathryn. If anyone has fought these last few days, it's you. No, it's not about giving up." His voice gentled. "It's about letting go, and I say that in the most positive sense. At some point, you'll decide there's nothing else you can do and that hanging on only brings more tears."
"Have you reached that point?" Kathryn asked.
He was silent, his eyes troubled. "I want to start remembering Robin the way she was. That'll only happen when this is done." (page 272)
The conversation continues from there. In the end, Kathryn makes the decision to stop life support. In fact, she pushes the switch. (To any ICU workers, does the family member actually do that? I always thought an MD or RN had to do it.) The book ends as the family begins to mourn. Delinsky handles the medical and emotional implications of her characters' journeys well.

I'm so glad that authors are addressing difficult issues through their work. In this novel alone, Delinsky also touches on anorexia and Alzheimer's with the subplots. Kristin Hannah's Firefly Lane provides education on detecting inflammatory breast cancer. She also started the Firefly Fund as a way to give back. Both books may induce tears but they're well worth it.

Chemo according to Freakonomics

2010-01-01T11:33:00.004-06:00

I was excited to learn that Freakonomics authors Steven D. Levitt and Stephen J. Dubner released a follow-up: SuperFreakonomics. If you don't see how economics could ever be interesting and/or relate to your life, these books are for you. Freakonomics promised to explore the hidden side of life, answering questions like, "What do schoolteachers and Sumo wrestlers have in common?" and "Why do drug dealers still live with their moms?" The response to the book was so great that the authors began a blog to keep the conversation going. I could only imagine what the authors would unearth when they wrote SuperFreakonomics but I didn't figure it would end up relating to me or my work. Then I came upon chapter 2 "Why should suicide bombers buy life insurance?" I'm not going to let you in on how chemo relates to this intriguing question; you'll have to read it yourself.

The authors discuss how most people want to prevent death at any cost. For those of us in the palliative and hospice worlds, this is nothing new. When it comes to cancer, chemotherapy and/or radiation are givens. (Anecdotally, it seems like most people just go along with whatever the oncologist says, without doing their own research or looking at or asking about treatment outcomes.) Most pharmaceutical sales are for chemotherapy. Chemo has been proven effective for the following cancers: leukemia, lymphoma, Hodgkin's disease, and testicular, especially when detected early. However, chemo has not been proven to be effective in most other cases of cancer, per Leavitt and Dubner. (Levitt and Dubner derived much of this section from interviews with practicing oncologists and oncology researchers, as well as articles and studies.) In fact, chemo has been shown to have no discernible impact on multiple myeloma, soft-tissue sarcoma, melanoma of the skin, and pancreatic, uterine, prostate, bladder, and kidney cancers. Yet, we can probably all identify people with these types of cancer who received chemo. My Grandma had multiple myeloma and was given chemo. I remember at the time thinking it was a small world, as the form of chemo she was given was ultimately developed through money raised by The Leukemia and Lymphoma Foundation, with whom I had fundraised for the year prior. It was a newer drug so maybe the oncologist was not off-base in trying it...God knows we were all grasping at straws of hope when she was diagnosed.

According to the book, cancer patients make up 20% of Medicare cases but use 40% of the Medicare drug budget. A typical chemo regime for non-small-cell lung cancer costs over $40,000. Consider that it will extend a patient's life by an average of 2 months. For that patient and his or her family, the costs and ravages of chemo might be worth an extra 2 months. But it might not. And how many patients are told the outcome prognosis upfront? The authors ask: "Considering its expense, its frequent lack of efficacy, and its toxicity- nearly 30 percent of lung cancer patients on one protocol stopped treatment rather than live with its brutal side effects- why is chemotherapy so widely administered?" Possible reasons include profit motive (oncologists are the highest paid doctors and they make more than half of their income from selling and giving chemo drugs; the other half of their income is ostensibly through surgery and radiation) and inflating survival-rate data. Or being overconfident in the efficacy of chemo. "'If your slogan is 'We're winning the war on cancer,' that gets you press and charitable donations and money from Congress,' [Tom Smith] says. 'If your slogan is 'We're still getting our butts kicked by cancer but not was bad as we used to,' that's a different sell.'" A final reason is that oncologists are only human who have to tell other humans they are dying and that they can't do anything to stop that. This is certainly a contributing factor to why we get so many late referrals to palliative care and hospice.

Even though chemotherapy has negatives against it, the authors deliver this good news: people who would have died previously of heart disease are now living long enough to die from cancer instead. Almost 90% of new lung cancer diagnoses are over age 55, with a median age of 71. Also mortality for people age 2o and younger has fallen by more than 50% and people aged 20-40 have a decreased mortality rate by 20%. The incidence of cancer for all age groups continues to rise, however.

So what does all this mean? It's certainly something to ponder as we work with our patients, those who are considering future treatment options or those whom have been told there are no options left. It's also good to be aware if and when you yourself are diagnosed with cancer. It brings quality of life issues into a new light. And in case you didn't find this interesting or relevant at all, you might want to consider chapter 4 (The Fix in in- And it's Cheap and Simple) and chapter 5 (What Do Al Gore and Mount Pinatubo Have in Common?) on hand-hygiene compliance in healthcare settings. My kudos to Dr. Semmelweis.

Caseload Check-in

2009-12-23T20:17:00.003-06:00

Just before Thanksgiving I was inundated with new patients. I thought I was going to go crazy! Since then, my caseload has dropped to an all-time low of 32. I've had a lot of patients come and go shortly after being admitted. It's strange but nice to be able to focus more time and attention on my regular patients. It's unusual for this time of year, to be sure, but maybe this is God's Christmas gift to me. When my caseload ratchets back up to normal levels, I'll have to remember this calm before the storm.

Merry Christmas everyone! And to all who are grieving or going through difficult times, may you be warmed by the loved ones around you and comforted by God's presence and love.

It's official!

2009-12-17T17:05:00.002-06:00

I just got the letter from ADEC today: I passed the test and am now an official thanatologist. I also have another set of initials after my name (CT). Hurrah!