Saturday, July 25, 2009

Palliative Care Grand Rounds

OK you guys, any of you that read my blog: I'm doing Palliative Grand Rounds for August. See here for details. Send me those blogs that you think are remarkable, sharable, full of palliative care wisdom! Now! Do it now!

A Day in the Life

People ask me what Outpatient Palliative Care is. What do I do? Today was a typical day.

Two of my patients are in the hospital. I'll see them first. Then I can go to the nursing home and do my home visits.

RB, 26 years old, wants to go home, has no idea--none--how sick he is how close he is to maybe not leaving the hospital alive. Septic emboli throughout his chest, heart valve about to blow, but can't be repaired, fungus growing in his brain. Yesterday I filled out the POLST form with him--Physician's Orders for Life Sustaining Treatment. We will not resuscitate him if the valve blows or he has a devastating stroke--either is possible. We will let him die, because if those things happen, resuscitation will not bring him back in any meaningful way. I don't even want to think about him dying now, so I haven't really had that conversation with him. That conversation is about much more than code status, you see. Besides, he doesn't look that sick and he is going stir crazy in that bed. He wants to tell his physicians what drugs to give him--pain meds, benzos, sleep aids. In turn, they are asking me what to do. Because I know him from clinic, because these are drugs that I prescribe for him. On the outside. We are all afraid he might walk out of the hospital AMA--against medical advice, despite the reality that he can barely walk after 2 weeks in the hospital. The resident asks me if we could send him home on hospice, but, like I said, I'm not there yet. I am rooting for him. Maybe it would be ok to sedate him a bit, at least he would stay here.

LK, 62 year old schizophrenic woman living in an adult family home found out she had laryngeal cancer and freaked out, landing in an involuntary admission to the psych ward. I know her from clinic too, where I manage chronic pain from peripheral neuropathy. She is having angry outbursts, unable to contain her emotions, making threats, feels that everyone wants to kill her, but also is having trouble breathing and sleeping. She did agree to some chemotherapy, but it's not going to buy her much time. Besides, they had to give her steroids prior to chemo, and steroids make sane people act crazy. My job- to talk to her about end of life issues. I think she trusts me, but this week is not the right time for this conversation. Best to work on her anxiety and insomnia first. Unfortunately, she doesn't have much time.

PJ with end-stage lung disease calls to tell me she has green sputum again. I go to the nursing home to visit, prescribe antibiotics and cough syrup, order sputum cultures, sit with her a while. "Am I going to have to go into the hospital?" she asks me. I answer, "I don't think so. I think you'll do just fine on the antibiotics." We've been arounsthis block many times over the past 8 months. Once when I didn't think there was a new problem to treat, I told her not to worry, I said, "You're not sick." She paged me later in the day, panicky. "If I'm not sick, are they going to kick me out of the nursing home?" She can walk about 12 feet without almost collapsing from breathlessness. In this job, I learn over and over, you have to be careful what you say.

Another nursing home patient, LF. She is a 70 year old Croatian woman who speaks some English but is hard to understand because of esophageal cancer. Today, I sat very close and listened very carefully. She had a lot to say. A long sad story. I feel most useful when I just listen.

Next, a home visit. KD, an 85 year old feisty woman with end stage heart disease. Living alone, daughter lives nearby. Has been doing ok, but has gotten weaker, now out of breath on her oxygen with conversation. Isn't eating or bathing. And her oxygenation is bad enough to be causing some confusion. Refused hospice last month, but today is agreeable to having a nurse visit twice a week. At first, in her usual way, she is cheerful and upbeat, but then turns solemn. "Aren't you supposed to be able to give me something, some pills, so I can die now instead of dragging this out?"I can't because I am not a physician, but living in Washington State, where this is her legal right, I have to take this request seriously. Later today I will notify the medical director at the hospital and call Compassion and Choices, who will send someone out to explain the process to her. I’ll call her old primary care doctor and ask if he is willing to help her, but when I reach him, he says no. When I explained to her daughter that someone would be calling her to schedule a visit, she was very anxious. "Do I have to be there?" Meaning, when she dies. No, she won't, volunteers are available to sit with patient's who decide to hasten death in this way. But I reassure her, "I don't think she is going to live long enough to go through with it." But I'm not sure how reassuring that is.

Last home visit. RB, 60 year old man with end stage liver disease from hepatocellular carcinoma, which comes from chronic infection with Hepatitis C, which comes from shooting drugs and is made worse by heavy drinking. He is really pissed at me, my last note mentioned that he is still drinking (he is still drinking) and his doctor and the social worker more or less ganged up on him in clinic last week. "Damn, I thought that was between me and you. I need someone I can just talk to. I'm going to die anyway. I thought you understood." There were beer cans everywhere, but he was so right, it was a violation of trust, although I didn't realize that when I wrote my note. I guess I just didn't believe anyone would give this guy a hard time about it. Dumb of me. He accepted my apology. I think we're ok. Did he fill out the health care proxy form I left with him? "I lost it,” he said, "give me another one and I'll fill it out". I think he wants me to visit again next week.

Sunday, July 12, 2009

Still missing you

For Jon Marshall Greenberg, God is gracious.
February 22, 1956 - July 12, 1993

Journal entry, undated, in the year of his death, 1993
I have been learning, since I first opened that door, to handle spiritual reality for increasingly longer periods of time. It’s wild in there. I can now handle it for almost three seconds.

Jon taught me everything I live and know about death and dying. He taught me many other things, but for this lesson, I am daily thankful. I am relieved, even grateful, to find no cure for life, to come to know life as death’s bas-relief. You may balk at this statement, but sooner or later you will confront its veracity. You may rage at human transience; I would gently suggest that you confront your simple mortality. Your wellbeing, your growth, your soul, your comfort, your legacy, your journey towards death depend upon this dictim. This is needed, even essential--at least in the complex world we inhabit, at least as much as women need midwives and doulas to transition into motherhood. I hold these views because of my friend Jon, who deserves credit for so much in my mature life. Jon didn’t want a cure, asked us to burn his body in the street and eat his flesh, dutifully confronted us with out own forthcoming mortality. Every day, I wish to remind myself of how often I fell short of being the kind of friend he needed. Although I didn't know it at the time, I had magic-wand ambitions, hadn't yet learned the value of presence and silence. The gift of time. The measure of comfort and being-with. I hadn't lost the need to fix things in my own image, didn't receive these gifts, embody these skills (if I even have) until after he left.

But I did carry on. And I do resist a cure for what ails me, what I am dying of, what I am made of. I resist the very notion of cure as it is presented in so-called western medicine. I prefer to sit with people who long for cures, but must settle for life-as-it-is, helping, if I can, transform horror, by improvisation, into a soothing lotion rubbed onto the naked body, sealing in the private journey and cherishing what is out of reach, a final untouched meal.

Some of my poems about Jon can be read here.

Friday, July 3, 2009

Another Great Grand Rounds!

Tim Cousounis at Palliative Care Success has posted the July edition of Palliative Care Grand Rounds. Go check it out! And please send me your most interesting palliative care blogs for the August edition!