Friday, September 18, 2009

Notes From the Field


I am in the emergency room with my 93 year old father-in-law. His colostomy bag has filled up with blood overnight, and the people who own the board and care home where he lives have called the ambulance because they are terrified that he might die. This will be his third admission this month; the first time, he had a DVT and was put on Coumadin. The second time, he had a fistula, and there was a lot of discussion about whether they should operate and how to manage it. He has atrial fibrillation, a bad knee, arthritis, and moderate/severe dementia. Each doctor he's encountered has treated a part of him, and has treated that part well.

During his second hospitalization, I spoke with the hospitalist and said that we would like to focus on symptom management and comfort. I was told that the hospital had a palliative care service. I asked for a referral. Oh, the hospitalist said, it's too late; your father-in-law is being discharged. I wish I'd know you wanted that and we would have ordered it.

I ask you, would the average person know to ask for a palliative care consult?

I had come to Southern California in part to say goodbye, but I was also determined to help clarify what the plan was for the management of all these medical problems. In other words, I wanted a "goals of care discussion." And that's why I was leaning over the gurney in the ER and shouting (because he's deaf), Joe, do you want to focus on being comfortable? No, he said, I want to wear pants.

I took that as a metaphor. I was going to make this hospitalization different.
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I have been a Geri-Pal social worker for my entire career. In much the same way that it occurs to a childless labor and delivery nurse that one day real life might mirror work life, I knew in the abstract that my beloved father-in-law would need care. And would someday die. I thought my professional training would help, and to some extent it did. I would periodically review his affairs: DPA for healthcare - check. Financial and legal planning done? Check. Big Talk About Code Status? Check. Enough money to pay for care? Check.

Joe had been in robust health until he was 90, lifting weights, golfing, body surfing. He drove his giant Cadillac around town, had dinners out with his girlfriend, and doted on his family. He belonged to clubs, went to church, knew all the neighbors. True, every friend he had ever known had died, including his beloved wife of 51 years, but if you had asked him about his quality of life before he got sick, he would have said it was "wonderful, wonderful" with all the optimism born of someone who had left a hardscrabble life in upstate New York to start a new post-war life in a beach town in southern California.

But then, parts of his body started to fail. His primary care doctor, a cardiologist, sent him to various specialists, in part to treat symptoms caused by something a different specialist had prescribed. Joe started to think of himself as feeble, and worried about our health and our safety. To him, the world had become a dangerous place. I started to worry, too, because his primary care doctor didn't seem to be addressing the big picture in any way. At work, I was surrounded by geriatricians who never seemed to hesitate to have these discussions, and as a social worker, I was a regular participant. Unfortunately for my father-in-law, the only geriatrician in the area was 50 miles away, and wasn't accepting new patients. Joe was a veteran, but he thought the VA was for poor people. Besides, he liked his doctor. Then, about a year ago, Joe started to fail functionally and was also diagnosed with dementia. There were more and more calls to 911 as the ER became the portal to care. He fell all the time and it was terrifying to watch him walk, but the former football star wouldn't use a walker. We pulled it together to keep him at home for a few more months, and I'm glad we did. We hired attendant care to give his girlfriend a much-needed break. We even hired an elder care consultant to see if I had missed anything (ok, I hadn't). Finally, his 75 year old girlfriend said that she couldn't pick him up off the floor anymore and that was that. We hired 24 hour care as a stop-gap measure but weren't able to sustain that indefinitely.

We found a nice board and care home, and I did my homework in properly vetting it, but in the end it was my gut and not my training that helped me decide that it was a good place. The people were infinitely kind, good cooks, too, and one of the owners was a middle-aged knockout, which made the adjustment for Joe a tiny bit easier. There were more small losses and more small goodbyes - the last family dinner at the beach house I considered my second home, now for rent to pay of his care, Joe's last ride in the giant Cadillac before we drove it to Northern California, where my 12 year old son's friends think it's cool. Joe's life got small, but he still liked to eat, and to see his family, and to wear his beautiful clothes. For awhile, my husband went to Southern California almost every weekend. The thing about being an only child is that there's no doubt who's responsible. But after my father-in-law's last hospitalization, I thought my husband needed a break, and I volunteered to go in his stead. Joe was out of the hospital less than 24 hours before he was re-admitted.

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In the hospital he recognized me, but wasn't sure how we knew each other. He would politely ask who I was, and when I told him I was his daughter-in-law, his eyes would widen in delight and he would say "wonderful!" We would both smile and laugh with this brief bit of happiness. He was calm except when they inserted the catheter. The nurse told me later that he'd tried to punch her during the insertion. I'd overheard the process, and she hadn't explained a word of what she was doing. I'd have punched her, too. Otherwise, he was unfailingly polite, thanking the nursing staff each time they drew blood, took his pulse, checked his blood pressure or O2 saturation level or delivered another all-liquid tray. I gave him a couple bites of a forbidden scone and jumped guiltily when the nurse came in, feeling like I'd snuck in a crack pipe. In a moment of clarity, Joe pointed to everything - the uncomfortable anti-DVT bed, the lines for antibiotics, for blood, for hydration, and said, this is awful. But then he said that his father and grandfather were coming the next day to get him. Jeez, I thought, I hope so. For your sake.

During our long stay in the ER, I had taken the ER doctor aside to talk. He knew Joe from previous admissions. No one thought they could do anything to fix his problems, he said, but they were worried about not doing anything. Comfort, I said, we want to focus on comfort. Oh, he said – we have a palliative care service. And so I asked for a palliative care consult, from the ER doctor and from everyone one else who came into the room. It's wonderful you have this service, I said - please let them know right away that I want to see them.

And so I waited that first day and waited the next day, but the consult service was nowhere to be found. I did everything but wear a sandwich board that said "talk to me about end-of-life care!" Joe was suffering; he did not want to be in the hospital, wearing a gown, with the hated catheter, in the uncomfortable bed, eating only jello. I did not want his last days to be like this. And here is where my professional training left me, and I became just another family member stymied by the system. I was at the nurse's station, weeping with frustration and grief, when the physical therapist who had met with us earlier came to my rescue. I can call the doctor, he said, tell me what you need. And so we had the goals of care meeting after all, with a different hospitalist, and a social worker, and my husband on speakerphone, calling in from work. We both cried at the finality of arranging hospice. And the hospitalist told me – I kid you not – that they had a palliative care service. Wonderful, I said.

On my way out, I made one more request, to liberalize his diet. I brought back a giant milkshake, and we drank it together. The next day, he was discharged, and hospice started.

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I know that my experience, Joe's experience, could have been much worse, but I think that if I hadn't made this conversation happen, he would have went home with nothing changed, and the cycle would have continued.

If I could barely make this happen – with a family in agreement, a patient with clear-cut wishes, and the training and the personality to press the issue - how can the average American? Joe was always clear with us and with his doctor about his desire to go quietly and quickly when the time came. Most people his age have lost everyone they know. They're not stupid; they know they're next. His primary care doctor had known him for years, was a kind man, and visited Joe each time he was in the hospital. I suspect one of the challenges for him is that Joe didn't have a clear end-of-life diagnosis like cancer. Perhaps he just felt uncomfortable having this conversation with a geriatric patient.

I am glad that the hospital has a palliative care service. But I wish it had been more easily available to us--and to other families. For us, the service was a lot like a nice couch with a plastic cover – good that it's there, but you can't really use it. I hope that we caught them at a bad time, and that the service will work for other people

And so Joe is back at the board and care home, with a hospice nurse who speaks Spanish, because the people at the board and care need a lot of support. This is hard for them, too. They love Joe, and his continued survival contributes to their livelihood. Both of these things are true. I hope for Joe that the end is quick. I hope his father and grandfather come to get him. And that he is wearing pants.

17 comments:

sei said...

I had a similar thoughts when I was trying to help my parents navigate Medicare D. I found it incredibly confusing and wondered, if I can't do this as a geriatrician, how is the average American going to do this?

Thank you for this beautiful post. I hope everyone involved finds peace and joy in short order.

leslie said...

Anne, what an amazing story. Kudos to you for persisting and getting your father-in-law the care he wanted.

Helen Chen said...

Thank you, Anne for this post. Joe is very fortunate to have you with him on this journey.

In the recent brouhaha over "death panels" what is lost is how incredibly lacking our non-system system is in compassionate and appropriate care for those nearing the end of life. Given the complexities, as in the birthing process, the patient in the dying process needs a midwife, a doula, an advocate, or best of all, a strong and courageous daughter-in-law.

Alex Smith said...

A remarkable, disturbing, and ultimately moving story Anne. Thank you for sharing this. Did you ever discover what the deal was with this hospital's phantom "palliative care team?"

Drew Rosielle MD said...

I read this, and all I could think about was the cruel things we do to dying patients.
Reflecting on Helen's comments, and 'death panels' and how absurd that allegation is, as well as how equally absurd what happened to your father in law.
What slays me is the lack of doctors, anyone, sitting down, looking over everything, and telling him and his family what is actually happening, and offering all options. It's this, this lack of treating the patient as a whole person and treating them in the context of their life, personality, and prognosis which I think constitutes the major failing of modern medicine - the major way we abandon our patients. It's not for 'lack of treatment' but the wrong treatments, at the wrong time, which make sense for no one, as in this story.
Patients, families shouldn't have to ask for this (a basically palliative/supportive-only approach); it should be offered up front, and continually reoffered as a patient's condition changes - many will take it, many won't - but no one should need to ask for it.

Patrice Villars said...

Beautiful, sweet and sad, post. Hospice staff has long lamented the number of 'late' referrals for admission, diminishing their ability to provide optimal support and care for pts/families at end of life. To follow Drew's comment, no one should have to ask for supportive care, or to 'fight' for hospice care at home. I am both touched and discouraged by this post. Touched that many more people like you, Anne, are aware of and demanding appropriate thoughtful care for their loved ones. Discouraged that despite all our collective efforts in past 10+ years to get palliative care services in hospital settings, we have a long way to go.

guym said...

Right. I 'felt' the truth of this story, in part because my 88 year-old father, also in southern CA, has at least eight physicians (an internist, cardiologist, gastroenterologist, rheumatologist, neurosurgeon and neurologist, and two - two! - urologists), each treating a part of him, really well. He likes them all and has follows-ups, or calls them for appointments, as needed. Does he/they keep his internist/primary care doctor in the loop? Sometimes.
I also 'felt' this story because I realize it could be about me sometime in the not-so-distant future. We've got to make our care of elders better. This is going to take more effort, despite the considerable work of those already involved (like the readers and writers on this blog). Our local hospital doesn't even have a phantom palliative care team and, absent a JCAHO mandate, probably won't anytime soon. Maybe Helen is right in her suggestion that what we all need is a good, savvy, courageous daughter-in-law. For now, it's too bad for us who don't.

ken covinsky said...

Thanks Anne for sharing this moving story. It really illustrates so much of what is wrong with how we care for patients and how recent discussions of palliative care have been framed.

It is really sad that the public "debate" about paying for goals of care discussions acted as if the point of these discussions was to ration needed care. As Joe's case illustrate it really is about providing needed care. I think your comment that all 9 doctors did a wonderful job taking care of their little piece, but that no one was really taking care of Joe illustrates what so many patients and families find so frustrating about their medical care. I think most families would feel intense frustration without being able to verbalize what is wrong. I think a medical background made it easier for you to identify what was wrong. It is much more complicated figuring out what to do about it.

The hospitalist's statement that he "wished he'd known" you wanted symptom control and comfort care so he could have ordered a a palliative care consult is frustrating on so many levels. Why did he think presence of this service absolved him of dealing with these issues? Could you imagine an internist saying to a patient with chest pain, "I wish you told me earlier. We have a cardiology service you know. Maybe we can deal with this next admission." Really speaks to the need for changes in training and culture.

Eric Widera said...

A beautiful and yet sad story. Thank you for sharing this.

Mike Steinman said...

Thank you Anne for the moving and insightful post. I was struck not only by your story, but by Ken Covinsky's response and the analogy he raised to a patient with chest pain being told belatedly that "I wish you had asked, in fact we do have a cardiology service."

Coming from this perspective, there are two major barriers to preventing this kind of fiasco from happening again, and again, and again. First, physicians and other health professionals need a better understanding of, comfort with, and reimbursement system for goals of care and end-of-life planning. However, I wonder if the second issue is more important - namely, that in general medical problems are farmed out to the appropriate specialist, and that (1) providers don't recognize end-of-life issues as a discrete, addressable problem (as they would a GI bleed or myocardial infarction), and that (2) even if they do, in most cases there is no easily available, reliable "specialist" (whether it be a geriatrician or palliative care provider) to whom they have a streamlined referral relationship. Thus, even the most well-informed and caring family members have a hard time getting the system to work for their loved ones.

I hope that your story and the poignancy with which you described it play its own small role in shaking up the system and moving us toward better care.

LeighSW said...

Thank you for sharing this, Anne. I am always interested in hearing how palliative/hospice professionals respond when it comes to their loved ones needing these services. You raised an excellent question: "If I could barely make this happen – with a family in agreement, a patient with clear-cut wishes, and the training and the personality to press the issue - how can the average American?" This is something we must all keep in mind as we work with patients and families.

Not perfect, but His said...

Thank you for posting this, Anne. I have been a physician for over 20years and have been working for hospice for the past 3 years. I had an experience two years ago of having to tell 4 different doctors that my father would be transferred to our inpt hospice facility rather than continuing hospitalization for an acute abdomen.

My father had a disabling 4X8 cm L internal capsule hemorrhage (very large bleeding stroke) when he was only 60. He spent the next 8 years significantly disabled in an assisted living facility and finally nursing home when secondary dementia became too severe for him to remain in the ALF. He had increasing courses of antibiotics and eventually increasing hospitalizations for pneumonia. His quality of life in his last year was definitely less than what I believe he intended in his advance directive--I KNOW it was less than my very proud and independent father had lived his life before.

When he awoke with symptoms of an acute abdomen, the nursing home had him in an ambulance before calling me. I got to the hospital before him and started my work with the ER doc, surgeon, pulmonologist and hospitalist. Convinced that my father's appendix had not ruptured, the surgeon believed a laparascopic appendectomy would keep my father from being in more pain if his appendix ruptured. The problem was that my father's appendix had ruptured 4-5 days earlier and he had not been able to feel it because of the damage to his brain from the stroke. The 90-minute laparascopic appy turned into a several hour completely open-the-belly surgery. I called for a bed at our inpt hospice and began telling the doctors that we were stopping what they felt was effective acute care. After all, the surgeon had been able to clean out the abscess and not resect any bowel--he had not given my father the colostomy I told him my father would hate. (His response to me pre-op was "At least he would be alive to hate it.")

The fluid from my father's abdomen was growing MRSA, a particularly hard-to-kill bacteria, but the medical community was strolling along with medicine as usual as if he had a scratch on his arm. It took all my energy to put myself between my father and his "care providers" to keep demanding that we get off the hospital merry-go-round. Fortunately, I was his legal DPOA for health care, or my father and I would have been at their mercy.

To make matters worse, all my colleagues' responses to me shook my confidence. Once I finally got my father in the ambulance headed to our inpatient hospice, I had to call my senior medical director and ask her, "I'm not wrong, am I?"

If I as a physician had this much trouble with "the system", how can our poor families survive against it?

Anonymous said...

Anne,thank you for your courage and determination on Joe's behalf.
I work in Decedent Affairs and even with my 18-year experience it was a hassle getting it all in place. I ran the gauntlet with my Mom before she died. She, thankfully, had a blessed, gentle death. Like Joe, she had a strong self-identity. She was always gracious, even during painful tx. If we don't rally for access to this wonderful alternative, we'll find ourselves in the same boat later on. Bless you! Liz

Madhuri said...

Thank you Anne.
Very moving and beautifully written. My thoughts are with you & your family.

Eric Widera said...

The blog Pallimed left some nice words on their site regarding this post.

http://www.pallimed.org/2009/09/first-person-accounts-of-pain-and.html

Sally said...

Beautifully written...
and I can only echo the sentiments expressed above...

I am sure that your experiences will serve to give you even more of a heart and a passion to serve

Larry Carroll said...

It sounds like Joe has enjoyed a rich and fulfilling life, and with your loving advocacy Anne, he will have a chance at a serene and dignified death.