Talking about Death at Harborview Medical Center

With Michelle at Harborview, June 2010 
photo by Clare McLean, University of Washington

"I gotta get outta here. 
Though I could be walking into a hell."

Last summer,  I spent six weeks as Writer in Residence at Harborview Medical Center, Seattle’s county hospital. (Next week, I'll be returning to Harborview for the last -- for now -- phase of my residency, but more about that later....) For dozens of hours during those six summer weeks, I sat in the hospital room of Michelle Angeline Maria Alfonso-Buske, who was admitted to Harborview on June 9, 2010, when she woke up and could neither feel, nor move, her legs. I came to know both Michelle and her husband Bob; they both became heroes of mine.

Michelle and I chatted for dozens upon dozens of hours together. By "chat," I mean: I sat and took notes while Michelle talked. And talked. Thirty-eight-thousand words’ worth. The work of spinning those words into essays has just begun. In the meantime, here are just 250 of her words:

Michelle Talks About Facing Death: A Collage

With Michelle and Bob Buske,
on the first day Michelle is able to leave the wing of her hospital room.
photo by Peggy Weiss

I gotta get outta here. Though I could be walking into a hell. Being dependent on other people is not--in fact, I just got a cold chill thinking about it. I really haven’t cried yet. Hey, if I’m going to palliative care, what I need is to make a will. We’re worried about them taking the house. Oh, god yes. Bob took care of his parents for two years. Then they took the house and he ended up living in his car! I am so beside myself. Bob is stressed to the max. I just told that doc from palliative care, I said I want to tighten my will up. Now. It’s for the people who take care of me when I go home; they have to have that “do not resuscitate.” Oh, man. This fucking paralyzed bullshit. I can’t even get to the bank. And my cell phone is broken. Bob has been coming every day everydayeverydayeveryday. He is the dearest man. Don’t you think? You know, I would get up at 4:30 in the morning to try and make him some coffee. He would never let me make him lunch. That was always the agreement we had. He did all the shopping and cooking and I would clean up. His blood pressure is sky high. He’s gonna have a heart attack. And if that happens, I’m going to the nursing home. … You know, I woke up and I thought this had all been a bad dream.


P.S. My time with Michelle inspired to me to look up this information on living wills and advance medical directives.

Scraps from a Grief Quilt

For the last four years, I’ve been writing about hospice, grief, all things funereal. It began when my mother was diagnosed with terminal cancer in 2006. Until 2009, I wrote only short fragments; the subject was too painful for sustained attention, yet too overwhelming to ignore. Now, I’m basting those small patches into something larger. Here’s one from the scrap bag:

Doing the Math

Mom’s oncologist must have been one of those students who mastered biology without ever mastering math. (I know; I was, too.) She considers this equation sound:

(four to six months life expectancy) + (gemcitabine-tarceva chemo-drip)

= (four days each week bedridden) + (two months’ longer lifespan).

Mom taught middle-school math; knows better.

"Of course." Three Moments at Harborview Medical Center

For six weeks last summer, I was Writer in Residence at Harborview Medical Center, Seattle's county hospital and regional trauma center. (I still figuring out how to write about that experience -- among the more powerful of my professional life.) One of the phrases I heard often there, in response to patient requests, was "of course." This short essay, about one day in the life of palliative care physician, was published in STAT, the Harborview staff newsletter, in June 2010.
 

Dr. Margaret Isaac sits across the table from a father. His son, a high-school senior, was expected to recover from the hideous car accident. But the fat globules released by the marrow from so many broken bones reached his brain. Many weeks have passed without improvement. Margaret and the father discuss the details and logistics of ending life support systems; he says he needs one more evening to discuss it with the teen’s mother. Of course, of course. A pause wells up in the room. Then he says, “There’s just one other thing.” Of course, Margaret says. “Is this the right thing to do?” Margaret leans forward; her voice is warm, reaching for confidence. “Well, it’s a right thing to do.” The father wipes his eyes with a maroon bandana and thanks her. 

Margaret visits two brothers. One, sleeping in his bed, has been at Harborview for fifty days. The other, sitting in a chair by the window, lives on the East Coast. This is his third and final visit; he’ll stay for the rest of his brother’s life. He asks – business-like, slightly wary – about Margaret’s training and background. She answers, then says, “Tell me about your brother.”  What would she like to know?  “What did he like to do?” Each morning he laced up his boots, anticipating a day spent outside. He worked as a farrier, which afforded him only what he truly needed: a trailer to live in, a pasture and stable (that he built himself) for his horses, a workshop for constructing mechanical things. Not long before his brain hemorrhage, his favorite horse had died. His brother found a piece of paper in his wallet that had several names and phone numbers written on it – his among them. He called all the numbers; one person came to visit. Margaret and the brother stand by the man’s bed. He opens his eyes and coughs. His brother passes his hand over the man’s face, but his eyes do not move. Both men return to their waiting.

The son of a stroke victim tries to imagine how his father would experience the world, if he were to regain consciousness: It is a field of light. There are no boundaries. He waves his hand back and forth, fingers reaching. Nothing to determine the edges of things. Margaret nods as the son talks his way toward the end of his father’s life. Four hours later, his mother and sister and brother-in-law have all come to the ICU room, said their goodbyes, and gone home, while bruises of exhaustion have bloomed under the son’s eyes. He has two final requests. Fifteen minutes alone with his father to say goodbye. Of course. That the older man’s body be donated to science. Margaret is stunned and grateful; she has never before received this request. The son and the doctor thank each other again and again.

It is not enough to care for the whole person, or even the whole family. The edges of palliative care extend beyond the physical. Where are the boundaries? Families come through Harborview’s doors, stand at bedsides, ask the staff and one another: What does it mean to be alive? What does another person experience? What sort of life would another person want to live?   

The answers lie just out of reach. Of course.