Tuesday, November 24, 2009

Engage with Grace

Here's a great tool to use with patients or your loved ones to help them figure out their end-of-life wishes.

Engage With Grace is a movement aimed at having all of us understand and communicate our end-of-life wishes.

Their original mission- to get more and more people talking about their end of life wishes- hasn't changed. They thought they'd try something different this year: a bit of levity. The rest of this post has been copied from Engage With Grace.

"At the heart of Engage With Grace are five questions designed to get the conversation started. They're included at the end of this post. They're not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we'd start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this, just five questions in plain, simple language can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we've included the five questions from Engage With Grace below. Think about them, document them, share them.

Wishing you and yours a holiday that's fulfilling in all the right ways."

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

Saturday, November 21, 2009


Yesterday ended up being a looooooooong day. Hospice RN Deb called me at 10 am to let me know one of our patients was in crisis. She was not able to leave the family she was with at the moment but planned to get over to our patient ASAP. I left the patient I was with and hightailed it over there. The moment I walked in the room I could see the patient had had a change in condition. Still, I had no idea events would unfold the way they did. The daughter told me she was doing better now, she said she hadn't cried in a few days and it built up until she talked to Deb on the phone. Deb finally arrived and while she worked to get the patient more comfortable, I met privately with the daughter to offer support. She is about my age, taking care of her mother with next to no help from anyone else. The patient was getting weaker and it was becoming hard for the daughter to clean and reposition the patient by herself. I decided to clear my schedule for the afternoon to do whatever I could to help out, whether sitting with the patient while the daughter took a nap or just being present.

The long and short of it led to a discussion about respite placement. Medicare provides 5 day respite care at a long term care facility under the hospice benefit. We all know how much I hate setting these up but it seemed to be the best option here. The daughter did not want her mom to have long term placement but the 5 day break would allow her to rearrange some things at home (for instance moving her mom's DME downstairs) and have a break from her care. It would also help her figure out whether she could afford to hire a CG (very limited finances and they were already getting assistance from the county) or if another relative would step up to the plate. There's one LTCF that typically makes respite an easy process and it happened to be close by. I called the admissions director and they said they did have respite beds available. I had the information faxed over at 1 pm and prepared to wait. Usually you hear back within an hour or two if the LTCF will accept a patient for respite.

In the meantime the patient had some other medical issues going on. The MD ordered a blood culture and an ABT was going to start. The RN had me call the admissions director to let her know about these new issues and what we were doing to resolve them. It was after 3 at this point; I felt I should have heard something by now. When I let the AD know this update, she asked me if I'd faxed the info over yet. I nearly had a heart attack! It turns out it was still in their fax machine and no one had brought it over to her nor had she gone looking for it, even though I stressed that this respite needed to happen fast. This was mind boggling! She said she'd go review it with the DON right away and get back to me. She called back a half hour later with some questions which I clarified. Then she called back 10 minutes after that saying they needed info on the Pleurex catheter even though the hospice RN would provide care and it didn't need to be drained for another week, which would not happen during the respite. At this point I was beside myself- it was almost 4 on a Friday afternoon, time was running out. I asked her if this was going to happen or not. She wouldn't give me a straight answer but noted that it was close to the end of Friday the weekend before a holiday. I had the office fax over the Pleurex catheter info and my supervisor called over there at my request to review it. Finally at 5 pm we got the answer that they would not take the patient tonight or tomorrow (because they had a complicated patient being admitted) and would only say "maybe" for Monday. Basically we were screwed. The odds of finding an admissions director still working at this time who would be willing to work on a respite placement for tomorrow were very slim. Trying to arrange a respite on Saturday morning is near impossible (I managed to do it once but it took about 7 hours of work.)

We decided to talk plan B. The daughter didn't want the patient to go to the hospital for an in-patient admission. She thought she could get a relative to come over and help over the weekend. A hospice RN would visit Saturday and Sunday. We would try to arrange respite on Monday. However, the MD didn't think that was good enough and pushed for in-patient. When the daughter still refused, the MD demanded that I arrange respite...tonight. Um, hello? I've never been a fan of this MD- she may be great with patients but she micromanages other staff and bullies them- and we don't even work for her! Still, I called a couple of other places. One admission director was actually still there, miracle of miracles, but they didn't have any respite beds. Other places had no admission personnel available. It was 6 at this point and the patient had another change in condition with audible congestion. RN Deb was back at this point and it was determined that the patient was actively dying.

Gears switched again. The daughter was committed to caring for her mom to the end and in their home. Continuous care was arranged. The daughter had a friend come over to offer support. I left their house about 8 pm with everything in place. I commented to Deb that I hoped the patient wouldn't die tomorrow (really today, as I write this) as it's the daughter's birthday. She shared a story from working with another family. It was going to be a family member's birthday and she told them she hoped the patient wouldn't die that day because of it. The family surprised her by saying they hoped the patient would die on the same day. Apparently they are of a religion that believes that the day you die is a celebration (let me know if you know which religion this is.) To be able to share a birthday with someone's death day is very special to them. It's the idea of birth and rebirth. Such an interesting way to frame death. But I still hope this patient doesn't die on her daughter's birthday. Of course, it isn't up to me or the daughter. We'll have to wait and see.

Thursday, November 19, 2009

Why do I do it?

Whenever I tell someone what I do for a living, after the inevitable "I could never do that!", they often ask what led me to become a hospice social worker. Quite a few things have happened in my life to put me on this path. I give them a condensed version but you, lucky readers, will get the extended cut.

My maternal grandparents have 12 siblings each, creating a very large extended family. Unfortunately, this side of the family also has quite the health history, including just about every kind of cancer you can imagine. Consequently I've been to my share of funerals starting at a young age. In fact, my mom recently told me I was just a few months old when I went to my first funeral. I don't think I knew any of the deceased very well at that time. I would say the first time a relative died where I felt affected by the death was my great aunt Jean (not quite sure how old I was, probably between 8 and 10). Despite the sadness associated with funerals, I actually think it's great that I was exposed to death at such a young age. I was able to see grown-ups model healthy ways of expressing grief and also learn that death is a part of life. These are both lessons that children will learn at some point in life; it does not help to shelter them from those realities.

The first funeral I remember was for my great-grandmother when I was in first grade. The church and potluck after are hazy memories. What stands out to me is what happened after that. My mom took the potluck leftovers back to my grandparent's house to put away while my grandparents finished visiting with people. She, my brother, and I arrived only to find that the house was locked (they never locked their house as they live in a farm community and this was the mid1980s). It was a hot day. There were concerns of salmonella if the food didn't get into a refrigerator soon. My mom demonstrated her talent for breaking into houses, however, and spied a window in the garage. She drove the car next to the garage and then- cue music- hoisted me through the open window so I could open the garage door and let everyone in. I remember thinking how great it felt to help other people. (The funny part of this story is that after all that, the back door was also locked- this door was definitely never locked- so my mom ended up taking out the window air conditioning unit and pushed my brother through.) Mom told me when I was little and someone got hurt on the playground, I would always run over to them and try to help. She thought I would end being a nurse.

When I was in 5th grade, my brother's best friend M was diagnosed with brain cancer. They were in 3rd grade at the time. On bad days, M's mom would call and ask if I could play with M's younger sisters. While I provided distraction from the tragedy unfolding downstairs, M's parents could focus on his pain control and spend precious time with their dying son. M died later that year. It was also around this time that I discovered Lurlene McDaniel books. McDaniels writes books about children with terminal illnesses, sometimes they do not survive. Being there for M's family in my own way and then reading about people who worked with terminally ill children led to my interest in someday working with that population.

The next notable death was my great-uncle Carl when I was 14. He had brain cancer and stayed at my grandparent's house during his final months. My grandma was his caregiver and they did get hospice (although she told me later that the support they received while Aunt Teresa was on hospice in 2006-7 was above and beyond the hospice care that existed in 1994. I don't remember anything about Carl's hospice experience, but my family always called Grandma the original hospice caregiver. Grandma was always taking care of others and I'm sure this rubbed off on me too.) Uncle Carl was a strong Christian and this strongly influenced his attitude regarding cancer. This in turn impacted my own faith and got me back on the right track with God. As I got older, I naturally formed stronger relationships with my extended family and friends, a very positive thing. But this also meant I was exposing myself to more loss. Through it all, I continued to feel that it must serve a purpose.

Starting in high school, I realized that I was a gifted listener. Friends were always coming to me for advice- even on matters with which I had no personal experience. It seemed that I was destined to be a counselor. Only I decided that I would be an English teacher, thanks to my lifelong love of reading and writing. I even convinced my favorite English teacher to let me do an independent study with him. I developed 3 lesson plans for sophomores during the first semester of my senior year. Mr. H. even adopted one of my lesson plans into his curriculum! I chose my college based on its excellent reputation for secondary education.

Still, I couldn't shake my interest in psychology and cancer. I signed up for psychology and sociology classes. An assignment for my sociology class was to learn about a job in the field. Thanks to a connection, I learned about someone who was a social worker at Children's Memorial Hospital. I was absolutely entranced by the job description but I didn't change my major until the end of the year. My college didn't have a social work program so I became a sociology major with a social welfare concentration and a psychology minor. I briefly volunteered at a children's grief group until life circumstances intervened. While I still wanted to work with terminally ill children, I thought it was important to explore other areas of social work. I started working in residential care with teenage juvenile delinquents before my senior year of college. While I enjoyed developing relationships with the girls, it was exhausting work and reinforced my interest in health care social work.

Somehow I landed in an awesome MSW program for grad school. My first year fieldwork placement was at a county health department in their Family Planning and Prenatal Clinic programs. We had to interview for our second year fieldwork placements and while I looked into and interviewed at a couple of hospitals, I ended up at a hospice in the city. I found that hospice was a good place for me. By virtue of my background, I was already familiar with many types of terminal illness, I offered a calming presence and a listening ear, and I found myself able to advise people in their darkest hour. I found the purpose in having experienced past losses- I could finally help others with what I knew. I never envisioned myself in hospice, much less enjoying the work, but it seems like a perfect fit. I love hearing life stories, soaking up their wisdom. I even love the perspective that the crazy families offer: gratefulness for my wonderful family and network of friends.

I like to tell people that I did my fieldwork placement in hospice and never looked back but that's not entirely true. I'm still interested in working with terminally ill children and I'd like to do more bereavement work. What is true that I feel called to my job without a doubt. While I don't always understand what it is within me that connects with the ill and grieving, I strongly believe that God has gifted me to do this and that He gives me the strength to do it. I am grateful that my experience in hospice was helpful to my family while my great aunt Teresa and Grandma were under hospice care. As difficult as that time was, I believe that God placed me in my job for that very reason. I don't know exactly what the future will hold but it'll be interesting to find out.

Sir Arthur C. Clarke on his 90th birthday

"How does it feel to have completed 90 orbits around the sun?" Words of wisdom from one of the best known science fiction authors. (I should note, however, that I do not believe extraterrestrial life is out there. Still, there's no harm in Sir Arthur's wish.) Full transcript available here.

Tuesday, November 17, 2009

What do you do?

The age old question asked of all social workers. As one specializing in hospice, I have a "script" I fall back on to explain my job title. Of course, it's not all-inclusive. In fact, the longer I work in hospice, the more I realize how unorthodox my job can be at times.

For instance, I tell patients that I'm there to provide emotional support, which includes stress management, developing coping skills, and offering a listening ear, as well as normalizing their experience. I also assist with long-term care planning and linking people to community resources. I can guide them with funeral plans and help set up Advance Directives. I assess their need for a hospice volunteer and/or pet therapy. I facilitate life review, provide prebereavement counseling, and encourage self-care for the caregiver. I provide respite at times. I read to patients, play music, lead them through guided imagery exercises, and provide companionship. I help with goalsetting and improving quality of life. I tell families that my role is the most flexible and that if I don't know the answer to their question, I'll find someone who does. Mind you, most families get the condensed version of all this!

Of course, there are times that my role doesn't fit the social work stereotype. The hospice team roles can blur. I figure I am there to help even if I'm not the RN/chaplain/handyperson. I don't do anything above and beyond my own abilities and I keep ethics in the back of my mind. But if someone needs help, I'm going to do it. So here's an incomplete list of other things I've done over the years that don't quite fit in to my normal job description:
-Moved furniture (making room for the hospital bed or setting up a TV in the patient's new room)
-Held a patient's leg up while the RN changed a dressing on his gangrenous foot (this has ensured that I will never ignore a cut and I will always take the prescribed ABTs)
-My Bucket List patient (almost skydiving, going to Springfield, etc.)
-Helped families dress their loved one after death before the funeral home arrived
-Helped RNs reposition patients in bed
-Sung hymns with families at vigil
-Prayed with the patient at their request
-Discussed a patient's bowel regimen at length. I hope I never care that much about my own habits!
-Helped with computer tech issues for the technology-challeneged and typed correspondence for the visually impaired

Hope you enjoyed this behind-the-scenes look. Any examples of blurred lines in your respective professions?

Thursday, November 12, 2009

New Book

I learned about this book thanks to my monthly newsletter from Team in Training (from The Leukemia and Lymphoma Society.) A TNT participant's patient honoree is featured in Perseverance, which profiles 20 young adults who were diagnosed with childhood cancer. The book shares their life lessons and experiences. I plan to pick up my copy soon!

From the website:
"These honest, first-person accounts lend amazing depth to the inspiring stories of these young men and women. Inside, you'll meet Zac York, who tells of climbing Mount Whitney-on crutches-after battling brain cancer. You'll meet Alex Oden, who-just days after brain surgery-gave his 8th grade peers a graduation speech called "A Day Well Spent," in which he challenged them to make a difference in just one day. You'll meet Kristen Jones, who, while battling leukemia, was able to pass the MCAT and pursue her dream of becoming a pediatric oncologist.

Twenty unique and fascinating stories, with one common theme: perseverance. The stories of these heroes demonstrate how anyone can learn to live with energy and passion, regardless of the obstacles to be faced, and will remind us all that now is everything."

Tuesday, November 10, 2009

Mural Work

I came across a great example of instrumental grief just now. Instrumental grievers emphasize grief as "thinking your way through it." They tend to problem-solve and take action, for instance, running a marathon or building a memorial. The flipside of instrumental grief is intuitive grief. Intuitive grief emphasizes "being" over "doing." It is feelings-based. Originally, instrumental grief was seen as a more masculine response, while intuitive grief was the feminine response. However, it is healthiest to have a balance between the two. The following story is about a mural (memorializing) that honors a widow's husband.

Regina Holliday began creating a mural protesting the healthcare system 6 days after her husband Fred died. She and Fred both believed the system failed him in his fight against kidney cancer. "It's a wonderful therapy and relief to get to paint," said Holliday. "To get to do this has been a wonderful dialog with the public. I mean, people often come over here. They look at the mural. They want to talk about it and they often share their health stories."

The note in Fred's hand states "Go after them, Regina, Love, Fred." Symbolism in the mural includes a clock with no hands (normal time seems suspended in a health emergency), a nurse at a computer with the dark screen (records not shared with patients), and a doctor with her hands tied (miscommunication in the healthcare system). No matter what you may think about healthcare legislation, there is no denying Holliday's voice or her husband's story.

Holliday is done with memorializing for now as the weather turns cold but the article notes that she could take her paints out again in the spring. I think this mural is a powerful response to the loss of her husband but it's just one step on the grief journey. I wish her well.

Memory Screening

National Memory Screening Day, an Alzheimer's Foundation of America initiative, is a week from today on November 17. Qualified professionals offer free memory screenings across the country, as well as providing education and follow-up resources. A screening consists of a series of questions and/or tasks designed to test memory, language skills, thinking ability, and other intellectual functions. Screenings are recommended for anyone concerned about memory loss or dementia, whose family and friends have noticed changes in them, or has a family history of Alzheimer's disease or a related illness. You can also be screened if you would like to see how your memory is now and for future comparisons. Screenings are private; it will only be the testee and tester and the results are confidential. It should be noted that a memory screening does not replace consultation with a doctor, nor will it diagnose any illness. However, the results may point to the need for further testing and consultation. You can find a screening near you by clicking here.

Monday, November 09, 2009

Patient Round Up

A sampling of my recent patients:

A former high school football coach

An author being cared for by her 30 year old daughter (I try not to imagine myself in the same shoes)

A man who stood up the Mafia 40 years ago and still lives- though he wouldn't put it past them to come looking for him

A restaurant owner in the process of handing the reins over to his son

A spitfire of a woman who raised a family and worked her whole life, who refuses to believe that cancer will take her down in the end

A former cop who became an auction assistant after retiring. Hoarder that he was, he took home any unsold items...his family is having quite the task of clearing out his home

A structural engineer who designed some of the expressways in Chicago back in the day

I love listening to everyone's life stories and hope that my own history will be similarly rich someday.

Thursday, November 05, 2009

Baxter the Therapy Dog

Palliative Care Grounds 1.10 are up at Pallimed: Arts and Humanities. They kindly honored me with The Hard to Pick Just One Award. Thank you!

If you don't have time to peruse the post, at least watch this video about Baxter the Therapy Dog. The Medical Futility Blog found this kleenex-worthy story.

Baxter died October 16, 2009 at age 19. He is rightly described as the world's best, most devoted, and oldest therapy dog. He volunteered with San Diego Hospice for 7 years. Melissa Joseph, Baxter's mom, has written a book about this amazing dog, Moments with Baxter. If your hospice or palliative care program does not already have a pet therapy program, I would highly encourage you to consider it. Pets have an innate ability to touch a person's life. Joseph's website has information on therapy dogs or you can look at Therapy Dogs International. TDI explains the benefits for hospice patients this way: "The sight of our dogs and the touch of their fur often brings peace and joy to those patients whose life once included animals. Physical contact has a calming effect and dogs have the ability to bring back pleasant memories of a person's life. Therapy dogs help combat loneliness and they give people the chance to have something to look forward to. Exposure to our dogs allows the patient to feel needed and wanted at a time in their life when death is evident."

Wednesday, November 04, 2009

Notes Left Behind

I stumbled across the story of 6 year old Elena Desserich who died of brain cancer in 2007. After her death, her parents came across hundreds of notes left by Elena throughout the house, in between CD cases, dresser drawers, and so on. It is mind blowing to think of this little girl planting these notes, a final legacy. How did she decide to do this? How did she feel as she hid her notes, knowing they likely wouldn't be found until after her death? What a beautiful gift for the family! Her parents have now published a book Notes Left Behind. Proceeds from the book will benefit The Cure Starts Now, an organization dedicated to fighting pediatric brain cancer.

Below is the Today Show interview with the Desserich family.

Monday, November 02, 2009

Reading Rules

We took care of a CVA patient for about a year and then discharged her a year or so ago as she was medically stable. She just came back on to hospice last month. She is bedbound and mostly blind thanks to maccular degeneration, thus limiting how she spends her day. The hospice chaplain and I had taken turns reading the entire Chronicles of Narnia to her during her previous hospice admission. She really loved listening to the stories and I enjoyed rereading the books. In fact, I was disappointed whenever the chaplain had read to her because that meant I missed out on a chunk of the story myself! As I assessed her activity level and interests this time around, it was apparent she had not been read to in awhile, although she did have an audiobook to listen to. There was a stack of mass market paperbacks next to her bed so I told her what she had there and she picked the one she was interested in reading/hearing. She chose a book by JD Robb, who is apparently Nora Roberts' alterego. Nora Roberts has had many of her books adapted into Lifetime movies, if you're not familiar with her work.

It is an interesting process to read a book aloud. Sentences that make sense while you're reading to yourself sometimes sound awkward when read out loud, especially when it comes to what I like to call "fluff books." Fluff books are enjoyable to read but either lack depth or are poorly written with interesting plots. The book I'm reading to this patient is definitely a fluff book. It's a science fiction murder mystery and it's interesting. I try to properly pronounce the futuristic technology but she seems to appreciate even when I get it wrong.

I usually do not edit any book that I read to a patient, with one exception. I do not use the F-word. I think it's a waste of a word and generally something else will suffice. So when the F-word is used, I substitute it for something else. I don't feel bad about this because Robb/Roberts used the F-word in one sentence and then changed it up to "fricking" the next sentence. No big deal, right?

What about reading sex scenes to a patient? I should have known that there would be a sex scene where Nora Roberts is concerned. I'm reading along when the character's husband comes home from his business trip. They're very happy to see each other, if you know what I mean. As I continued to read, I was freaking out in my head. This is so awkward! Is this even appropriate to read to someone? Should I just skip a couple of pages? Maybe this patient likes the author because of the sex scenes- then I would be depriving her. In the end, I did read the sex scene, albeit as quickly as I could. And now I just hope that there won't be any more in this book!

So what do you think? Is a little editing OK here and there? Would you have read the sex scene to a patient?

Update: Before reading further to this patient, I asked her specifically if she wanted potential sex scenes to be read to her. She quickly answered "yes, please do!" And there we have it. From now on, if I'm reading a book selected by the patient, I will first ask them their preference regarding cursing, sex scenes, and violence.