Sunday, October 5, 2014

Making your dying days your best possible days

A couple of years ago, I got a call from the husband of Peg Bachelder, my daughter Hunter’s piano teacher. “Peg’s in the hospital,” Martin said. ...

He put his cell on speaker for Peg. She sounded weak and spoke in long pauses. She said the leukemia treatment was not working. ... She didn’t know what to do. ...

What is it we think should happen now? Her condition was incurable by established means. So should she press the doctors for other treatments, experimental therapies, anything with even a remote chance of keeping her going, no matter what? Or should she “give up”?

Neither seemed right. But for more than a decade in medical practice, I had not really understood what other choices might exist. ...

But hearing her fears, I suggested that Peg try hospice. It’d at least let her get home, I said, and might help her more than she knew. Hospice’s aim, at least in theory, I explained, is to give people their best possible day, however they might define it under the circumstances. It seemed as if it had been a while since she’d had a good day.

“Yes, it has — a long while,” she said.

That seemed worth hoping for, I said. Just one good day.

With her husband’s encouragement, she went home on hospice less than 48 hours later. ...

A few days later, however, we got a surprising call from Peg. She wanted to resume teaching. ...

That hospice could make teaching possible for her again was more than I’d imagined. But when her hospice nurse arrived, she asked Peg what she cared most about in her life, what having the best day possible meant to her. Then they worked together to make it happen. ...

Her first goal was just managing her daily difficulties. The hospice team put a hospital bed on the first floor so she wouldn’t have to navigate the stairs, organized a plan for bathing and dressing, adjusted her pain medications until they were right. Her anxieties plummeted as the challenges came under control. She raised her sights. ...

It took planning and great expertise to make each lesson possible. The nurse helped her learn how to calibrate her medications. “Before she would teach, she would take some additional morphine. The trick was to give her enough to be comfortable to teach and not so much that she would be groggy,” Martin recalled. ...

“It was important to her to be able to say her goodbyes to her dear friends, to give her parting advice to her students.”

Medicine has forgotten how vital such matters are to people as they approach life’s end. People want to share memories, pass on wisdoms and keepsakes, connect with loved ones, and to make some last contributions to the world. These moments are among life’s most important, for both the dying and those left behind. And the way we in medicine deny people these moments, out of obtuseness and neglect, should be cause for our unending shame.

Peg, however, got to fulfill her final role. She lived six weeks after going on hospice. Hunter had lessons for four of those weeks, and two final concerts were played. One featured Peg’s current students, all younger children; the other, her former students from around the country. Gathered in her living room, they played Brahms, Chopin and Beethoven for their adored teacher. A week later, she fell into delirium and, a short time after that, died peacefully in her bed.

My final remembrance of Peg is from the end of her last recital with the children. She’d taken each student away from the crowd to give a personal gift and say a few words. When it was Hunter’s turn, Peg gave her a book of music. Then she put her arm around her.

“You’re special,” she whispered to her. It was something she never wanted her students to forget.
--Atul Gawande, NYT, on the good death