Tuesday, November 25, 2008

When she tells you she is tired, listen.

Every time I wash my hair, I think about my mother. Again and again, as I squeeze a dollop of shampoo into my hands and begin to rub lather into my scalp, I remember.

In her last months she was so tired, a fatigue that taught me everything I needed to know about fatigue. In truth, my early responses, when she said "I'm so tired, all I want to do is sleep" were terribly unhelpful. I thought I knew what it was like to be tired all the time, actually in the throes of recurrent depressions, I did know. But Ede had never before experienced fatigue as a symptom. For her entire life, nearly 80 years, she woke early and never napped. Indeed, as she grew older, she seemed to need less sleep. Until the cancer, her energy seemed legend. Until the cancer. So I really didn't get it. Would tell her it was ok to be tired, ok to lie down, ok to rest. As if I knew.

Then one day, getting out of the shower, as I was helping to dry her hair, she said, in a uncharacteristically quiet, almost offhand voice: You don't really have to shampoo twice, do you? I knew exactly what she meant. Although in reality, instructions have changed. Decades ago, old directions on glass shampoo bottles read: shampoo. rinse. shampoo again. rinse again.

There was a lost feeling, a sadness. All these years, I thought, she was following old directions, but now that she is so tired, she must question what is truly necessary. I thought about the history of hair washing, although I certainly don't claim expertise. But I do remember perching on the tall yellow step-stool with a towel around my neck, being tipped backwards, head lowered, my mom or my aunt washing my hair in the kitchen sink. As much as I hated it, once a week, I couldn't get out of it. And I had lots of hair. And she shampooed twice, rinsed twice. There was a time before showers, when bathing, shampooing, hygiene, the whole shebang, was just a different set of rules. There was a time, during my lifetime, that you didn't wash your hair if you had a cold, or were on your period. Ede told me that in her teenage years, they called having your period, falling off the roof. I can only guess that the phrase was so obscure so that it would forever remain obscure. A life in which one could not imagine seeing ads for tampons on television. A time when there weren't televisions, tampons or showers.

These thoughts, as I shampoo my inch-long wash-and-wear hair pretty much every day (shampoo once, rinse once), converge: my mom dying a bit each day; me at six getting my hair washed in the kitchen sink; images of my mom and her sisters as teenagers whispering about their periods; me drying her hair when she was too tired to do it herself. I am grateful for the images, the memories, the shuffled meanings. I am grateful for the lesson.

If someone, a patient, a family member, anyone, tells you that she is tired, very tired, listen. It is a symptom. Like pain. For some, it's the most horrible symptom of all. Life is fleeing, and here you are, unable to stay awake to watch. And all the rules suddenly must change.

Thursday, November 20, 2008

Occasional Notes from Seattle

For the past two months, I have been sending occasional notes to my "palliative pals" at the Lehigh Valley Health Network where I worked with the palliative care team for 2 years, before moving to Seattle to join the palliative care team at Harborview Medical Center. Partly to stay in touch with folks I miss, partly to decipher why I left one palliative care team to join another. I am publishing my most recent note here, as a personal incentive to blog more often about the world of palliative care. A world I inadvertently fused with in the late 80's when I was involved in AIDS activism and AIDS medicine. During the years when palliative care was really all we had to offer, when palliative care meant watching my best friend die in his 30's. When I discovered that no other part of the life cycle interested me more, engaged me more, or compelled me more than death.

For this intention, I am grateful to Pallimed, A Hospice and Palliative Medicine Blog (Visit at http://www.pallimed.org/) and to Christian Sinclair in particular, who writes for Pallimed. Christian is a palliative care doc whom I've never met, but have come to appreciate (love? is love too strong a word? I don't think so, this is strong stuff, don't you think?) through following his tireless review of palliative care literature along with chock-full-of-smarts-compassion-&-humor writings. Amazing isn't it? When worlds converge. Palliative care and blogs. Who knew?

So (as everyone in Seattle starts sentences with ...),

As we head towards Thanksgiving, I am feeling thankful. The whole world changed with the election of Barak Obama, and I survived my first week attending for the palliative care service at Harborview! It was a wild week, there were 4-5 new consults each day, and on Wednesday we had 20 on the census. I had a resident and a wonderful medical student, so I did have help. But I had never worn the attending hat before, and I was grateful to get through it without screwing anything up. In fact there have been a lot of firsts this month for me--a lowly (in most states) nurse-practitioner. The first day I was covering the outpatient service, I signed not just one, but two death certificates. I am carrying 3 pagers. I facilitated death rounds for the MICU residents. The youngest patient I've followed was 9, and about half of our consults are under 60, there is more trauma here than chronic illness. It's hard, but I love this job, I guess just wasn't fully walking in my own shoes in a job with less responsibility, less challenge.

It's taken me these two months to begin to understand a tiny bit about how things happen at Harborview, but there is an incredible cooperative spirit and collaborative attitude. I believe there is something quite special about this hospital, in addition to it being in Seattle, which is certainly a liberal-green-friendly leaning city. Pretty much everyone working here says that is the case. The idea is that if you like working in this environment (fast-paced, very high acuity, state of the art, safety-net mission) you stay forever, if you don't, you leave at 30 days. I love going on ICU rounds and seeing the nurses being very much a part of the team, giving report, asking for what they think the patient needs, very respected, and of course, very competent and caring. The trauma ICU probably does 3 or 4 withdrawals of life support each week, using a protocol developed by palliative care, so everyone is extraordinarily competent when it is time to withdraw life support and and provide comfort measures with family present. We don't even get called, unless there are complex family dynamics.

The current plan is for me to build the outpatient program. I almost regret agreeing to that plan, as it means I will only attend in the inpatient service about once a quarter (now that I've done it once, I realize how exhilarating it can be). But the outpatient opportunities are wide open. Why things are so open here for the palliative care program, and less so in other communities is something that I am really trying to grasp. I will be seeing patients at a dialysis center and an acute care vent-weaning facility. I have 1/2 day of clinic once a week in adult medicine, Darrell has a 1/2 day clinic in oncology, but that could grow. This week we were the primary providers for 5 hospice patients, 2 at home, and 3 in nursing homes. The hospice folks really love us because we make house calls, I don't have to tell you how amazing that feels to me, to be having a collaborative relationship with hospice!

The justification for hiring another NP for the service was based in part on growing this program, so I will have to make it grow. But then, pretty much everything grows here, bathed softly in water, not so much rain as drizzle, almost every day. Seattle is breathtakingly beautiful. Did I mention I have a spare bedroom, and that you are all welcome to visit anytime?