Tuesday, June 30, 2009

Dream Foundation

You may remember that a couple of months ago I was looking for a wish granting organization to help one of my patient's get back to Arizona one last time before he dies. Fairygodmother Foundation is no more so I went through the Dream Foundation. I am happy to announce that DF is granting this wish! The application process was very smooth and I heard back from them within a few weeks of mailing it off. Definitely a resource we should all be taking advantage of! We're working on the medical authorizations right now and hopefully they'll be able to start planning the trip soon! The patient and his wife are quite anxious to go, especially as he is starting to further decline. I'll be sure to keep you all updated on how this dream is realized.

Sunday, June 21, 2009

A New Kind of Hospital Chaplain

I was absolutely fascinated this morning to read about a new Buddhist chaplaincy program, the New York Zen Center for Contemplative Care. It started last year and is accredited by the Association for Clinical Pastoral Education. While I personally do not agree with the Buddhist faith, I do agree that complementary or alternative treatments are worth looking at.

"Instead of relying on drugs and hospitalization, the Zen center encourages stress and pain relief through meditation, breathing exercises or conversation. Even if such methods cannot provide a cure, they can help make patients more comfortable. And the Zen chaplains are able to spend more time with patients, time that busy doctors and nurses often cannot spare."

Of course, Buddhist chaplains are not the only ones that can assist patients with meditation, breathing exercises, or conversation. Those activities are generally a function of most chaplains and social workers. The article quotes the co-founder of the Zen Center as stating, "There is one rabbi and two Catholic priests. They're great people, but the rabbi sees Jewish patients. The Catholics anoint the sick. Then there's everybody else." Maybe we do things differently in the Midwest but that statement is the opposite of how our chaplains opperate! Yes, Catholic patients will often request Catholic chaplains and so on and so forth. The beauty of our chaplains (we have 2 Catholic chaplains and 2 Protestant chaplains) is that they can meet with anyone regardless of their faith background. From what I understand, that is a tenet of chaplaincy, to help people access their own spiritual beliefs without imposing your own. I can, however, see how patients without a faith background or who are no longer affiliated with a church might be more open to meeting with a Buddhist priest than anyone else.

What I liked most about the article came at the beginning. Chodo decided to share his own battle with alcoholism with a medically compromised patient who would not discuss hospice or signing a DNR. His hope in sharing his own story was that it would spur conversation that would help the patient explore his reticence, ease his mental anguish, and prepare him for what was to come. There is so much talk about if or when to disclose personal information to patients, boundaries, etc. And it is wise that we examine these issues. But I also think that we can lose focus on what will best help the patient. I've disclosed personal information after careful consideration: examining my goal in sharing it, and discerning how this information could assist the patient or family member in their journey. Should you share this information with everyone? Definitely not. However, Chodo illustrated this technique very well.

Saturday, June 20, 2009

IL Budget Crisis

It is a tough time to live in Illinois these days. Just when you think our legislators can't get any more ridiculous, this happens. On May 31, 2009, the Illinois General Assembly passed a partial budget which created a $9.2 billion funding gap leading to huge cuts in fundamental state services. Severe cuts in the State human services budget will have serious adverse consequences for local governments, healthcare organizations, public safety agencies, the courts and corrections. Slashing funding for mental health services, addiction prevention and treatment programs, and youth services will result in less prevention, more crime, and higher detention and incarceration rates. A budget that cuts human services and other vital programs by 50% or more will also result in significant job losses, perhaps as high as several hundred thousand jobs across Illinois.

I cannot even begin to imagine how these cuts will affect my patients. Several in my caseload barely make ends meet each month, even with food stamps, Circuit Breaker, and assistance from DORS, along with many other community resources. There are also patients on my caseload that are on Medicaid to cover medical care and often long-term care facility placement. Without these and other services, our patients would be lost and their quality of life greatly affected during an already stressful time. I cannot believe that cutting social services is the only way to resolve our state budget.

NASW for IL is spearheading a campaign to protect these vital services. Rallies are being held all over the state. Phone calls, emails, and letters are being sent to our representatives. If you live in IL, please click here to send a message to your representatives (you don't have to be a social worker to use this resource.) NASW-IL will continue to post updates on the budget crisis.

Friday, June 19, 2009

New challenge

Today a 28 year old woman was admitted to hospice from the palliative care program. When I listened to the admission report, my first response was that this would be way too close to home. I did not feel comfortable being the social worker and, given the family dynamics, I wasn't sure how the family would feel about having a social worker who is just a little older than their daughter. I was initally saved from further pondering as the palliative care social worker was going to keep the patient. Then my supervisor called me this afternoon and said the family did not want the PC social worker to stay involved. And given that this patient is firmly in my territory, the ball was back in my court. After further conversation with my supervisor and a lot of prayer, I agreed to take on this patient. There's a chance she will die over the weekend. And there's a chance that, come Monday, the family won't want further social work involvement. Or it could be that my youth will be to my advantage and will be a good fit for this family. Only time will tell. And at least I have a weekend to come to grips with providing care to someone close to my age. It at least made me realize that it's time to schedule some routine MD visits for myself- how's that for a reality check?

Monday, June 15, 2009

Simple Pleasures

I was visiting with a man in his 50s this afternoon. He's on some intense pain medications due to a fractured right leg which will never fully heal due to bone mets. Consequently he was a little sleepy when I arrived but he gamely engaged in conversation before falling asleep midsentence. Last week the same thing happened so I just sat there for about 5 minutes until he woke back up. He apologized for falling asleep- no matter how often I tell him that it's OK if he needs to rest for awhile, he always feels badly. He asked if we could go into his backyard since it was a nice day. He wanted to show his caregiver what needs to be done in the garden. I accompanied him (plus his walker) outside, trying to match my gait to his. He showed me some of his favorite plants and discussed the flower and fruit trees on his property. It felt nice to be in the sun! He can walk fairly well with his walker; his left leg has bowed out to compensate for his right leg. We chatted about nonconsequential things as we walked along. As we came around to the front of the house, he commented that it felt good to walk outside. And then he thanked me for walking with him. I of course told him he was welcome but was a little surprised that a simple walk was worthy of thankfulness. But as I thought more about this man's circumstances, I realized that he does not get much interaction from other people. His caregiver is Polish but speaks decent English. However, I don't think they talk a whole lot, mostly because this patient was initially very resistant to having any caregiver in the home. It also sounds like he wasn't around too much while his kids were growing up. To their credit, the kids are involved but they have families of their own. I got the impression that his family and friends tend to rush their visits or talk about doing things with him but don't follow through. And then along comes the hospice team. Along with goalwork, I provide a good distraction for this man once a week. A walk doesn't seem like a big deal to me but to this patient it seems to mean so much more. I was honored to bring something good to his day.

Saturday, June 13, 2009

Caregiver Fatigue Timeline

I was given a bad photocopy of this timeline a couple of months ago and finally was able to type up a nicer version. I've used it with several caregivers so far and it's been a great help each time. It's one thing to talk about the importance of self-care. It's another for a caregiver to have visual confirmation of where they're at and to also see what may lie ahead if they're not proactive now. Too often caregivers lose sight of themselves. Their whole world is wrapped around caring for their loved one. While there is great reward in caregiving, it takes a huge toll. I always advise family members to figure out (before they start caregiving!) how they are going to prioritize themselves. It's not asking for the moon. It's figuring out stress management skills, stealing just 15 minutes a day for themselves to read, nap, listen to music, and also lining up respite care through an agency, volunteers, or other family members. If a caregiver can do these things from the beginning, their health and emotional well-being is more likely to stay intact.

Caregiver Fatigue Timeline
Family Caregiver Support Project
Northwest Regional Council/Area Agency on Aging

1-18 Months
• Recognizes (and perhaps struggles with) the differences between providing long-term care (vs. acute care)
• Anxious to provide best possible care
• Manages the house, garden, car, shopping, bill paying, and cooking
• Attends to family relations
• “Keeps up appearances”
• Helps person with dementia through social situations
• Remains optimistic, caring, supportive
• Operates as “superwoman” or “superman”
• Attends to personal care
• If working, spends “vacation” time for caregiving

At 21 Months
• Begins to take medication, usually for sleep/headaches
• It becomes harder and harder to keep on top of things. The loved-one’s personal care needs intensify, adding new duties (for example trips to the doctor, medication management, etc.)
• Some help from family still available
• Takes more time off from work

24-32 months
• Emotional and physical resources drained
• Less and less personal contact with own doctor, dentist, minister, friends
• Experiences feelings of powerlessness
• Caregiving consumes both day and night
• Outside help dwindles away
• If working, not able to attend training foradvancement and/or skips promotions

At 32 Months
• Stress becomes harder to conceal
• Caregiver begins taking tranquilizers
• Begins using medication for musculoskeletal pain
• Sleep is continually disturbed
• Caregiver becomes irritable
• Less and less contact with others
• If working, may scale back further on work hours or responsibilities

By 38 Months
• Caregiver feels unhealthy
• Finds it hard to get up
• Never feels rested
• May have hypertension/colitis
• Has symptoms of chronic fatigue
• Caregiver loses the will to take care of him/herself
• Is unable to manage the household
• Rarely socializes with others
• Feels helpless, guilty, a failure

After 50 Months
• Chronic state of fatigue
• Caregiver is in a state of “unwellness”
• Becomes isolated
• Is unwilling or unable to access resources for information or help

Wednesday, June 10, 2009


My Grandma died two years ago today. I had planned to write a nice introspective and reflect on how it feels to be two years out from this loss. Life got in the way, however, and I ended up working a 12 hour day. I was called to make an emergency visit to a patient being admitted to hospice; his wife was very concerned about their 6 and 2 year old sons. He died about an hour and a half after I arrived. I was able to make good connections with both sons and I feel I helped this family in their time of need. In fact, the connection with the 2 year old was so good that he didn't want me to leave. He actually started crying when I told him I was going home, which of course made me feel terrible! I plan on doing follow-up bereavement work with the kids when things have settled down. In a way, I think my Grandma would have appreciated that I'm still working in hospice and helping others more than she would have appreciated an introspective tribute. Grandma was all about other people. You know the cheesy acronym for JOY? Jesus first, others second, yourself last. That was Grandma completely. I miss her but I am still inspired by her example.

Monday, June 08, 2009

Palliative Care Grand Rounds

The latest Palliative Care Grand Rounds is up; volume 1 issue 5 is hosted by Angela Morrow for About.com Palliative Care.

There's lots of good stuff in this issue. I was especially impressed by Life as a Hospice Patient (highlights the ups and downs of being on hospice, readers will be blessed by Judi's candidness) and Fresh Widow (great bereavement insights from someone who lost their husband 3 years ago).

Saturday, June 06, 2009

Royal Pains

Royal Pains is the latest offering from the USA network. I've always appreciated USA's tagline: "Characters Welcome." The basic premise is as following. Up-and-coming New York doctor Hank Lawson (Mark Feuerstein) properly triages two patients, working on the kid with the higher medical needs; however, this results in the death of a wealthy hospital trustee. He is then fired from his position and blacklisted at all the area hospitals. Broke and seemingly depressed, his brother Evan (Paolo Constanzo) drags him to the Hamptons where he makes a dramatic medical rescue at a party. Hank inadvertently finds himself the Hamptons' newest on-call doctor.

It's an interesting dichotomy that Hank saved the "poor" kid instead of the rich hospital trustee and now is in the Hamptons working for the rich elite. Of course, this is why Hank fights the idea of becoming the Hampton's newest on-call MD for the majority of the pilot. He has the notion that "We are who we care for" stuck in his head. At times the writing was quick witted and perfectly acted. The next moment the actors are spewing these wooden, dull lines and the plot seemed stuck, as in "let's just get through this pilot so we can get to the good stuff." I think this could be a show worth sticking with, at least for the summer. Now that we have our main characters introduced, Hank has accepted his calling, and there is a promise of a love story, things are bound to get interesting.

Of course the show's premise raises questions. My MD decided to trim down his practice about 4 or 5 years ago by going this route. For a $1500 annual retainer, he is available to his patients day and night. Since I rarely visit the doctor, I left his practice and found somebody else. However, I live in a nice area and I've heard that my former MD is doing quite well for himself. Fine and dandy for the people who can afford him, but what about the rest of us? There are many patients who benefit from house call MDs (and now there's possible legislation to support that!) Hank's love interest is a hospital administrator so I'm hoping the show will address the many difficulties people face in accessing and paying for healthcare.

Monday, June 01, 2009

Great Day

Even though I'm behind on end-of-the-month charting, this was an undeniably great day. Because of said charting and other random business, I only made 3 visits but there was no doubting that I made a comforting connection at each home. I won't delve into the minutiae of each visit- I don't have the luxury of time tonight. However, I will share the "evidence" of my great day.

First I saw a patient that is one of my regular weekly visits. We skipped last week due to Memorial Day. When I arrived we caught up on what the patient and his wife had been up to and then the patient asked me if I liked pineapple upside down cake. His wife had made some yesterday and they wanted to share the wealth. She sent me home with a big slice which I think I will save as a treat for tomorrow. (I was in more of an ice cream mood tonight.)

Next I met with an 18 yo girl for whom I've been providing bereavement care. She graduated from high school last weekend so there was much for us to process. One of the highlights of the visit was the pitbull puppy her boyfriend had bought for her 3 days ago. Blue was the cutest, tiniest puppy I've ever seen! He provided some good comic relief amidst the seriousness of our conversation. It's been really neat to watch this girl progress since her dad died in the fall. She used to never share her feelings with anyone but she has always talked openly to me. As we've worked together on developing her coping skills, she has found herself to be more open with other people and is slowly but surely integrating this great loss into her life.

Finally I met with the family of an actively dying nursing home patient. The patient's daughter, granddaughter, and 6 yo great-grandson "R" were there. I visited with the family for about an hour and a half. R was a trooper, doing his best to entertain himself in a room full of woman. He announced to us all that there were 4 women in the room and he was the only boy. He seemed unsure about these odds, even as we assured him that one day he would love this! R sang a Springtime song to me complete with motions- so cute! He eventually settled down with a coloring book. When it was time for me to go, he asked me to wait because he was coloring this picture for me. He quickly finished coloring in the race cars, added "From R" on the bottom, and presented me with his gift. I was so touched that this little boy would want me to have one of his drawings! It's now hanging up on my fridge.