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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.
She’d been treated in 2010 for a rare pelvic cancer requiring chemotherapy, radiation and radical surgery.
She returned to teaching and refilled her student roster in no time. She was in her early 60s, tall, with a lovely, gentle way that made her immensely popular. Two years later, however, she developed a leukemia-like malignancy caused by her treatment. She went back on chemotherapy but somehow kept teaching. Then for two straight weeks, Peg postponed Hunter’s lessons. That was when I got Martin’s call from the hospital.
He put his cell on speaker for Peg. She sounded weak and spoke in long pauses. She said the leukemia treatment was not working. It had impaired her immune system, however, making her sick with fevers and an infection. Imaging also showed that her original cancer had come back in her hip and liver. The recurrent disease caused immobilizing hip pain and made her incontinent. That was when she checked into the hospital. She didn’t know what to do.
What had the doctors said they could do? I asked.
“Not much,” she said. She sounded utterly hopeless. They were giving her blood transfusions, pain medications and steroids for the fevers caused by her tumor. They’d stopped giving her chemotherapy.
This is the moment we continue to debate in our country. 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. I wasn’t effective in these situations. And it bothered me — as a surgeon caring for patients with problems I often could not fix and then as a son with a father in his 70s experiencing mounting difficulties in his life. So for three years, I researched a book on what has gone wrong with the way we manage mortality and how we could do better.
I spoke with more than 200 people about their experiences with aging or serious illness, or dealing with a family member’s — many of them my own patients, some in my own family. I interviewed and shadowed front-line staff members in old age homes, palliative- care specialists, hospice workers, geriatricians, nursing home reformers, pioneers, and contrarians. And among the many things I learned, here are the two most fundamental.
First, in medicine and society, we have failed to recognize that people have priorities that they need us to serve besides just living longer. Second, the best way to learn those priorities is to ask about them. Hence the wide expert agreement that payment systems should enable health professionals to take sufficient time to have such discussions and tune care accordingly.
Not everyone will feel ready to discuss such subjects, to be sure. But I decided to try the questions with Peg. I asked her what her understanding of her condition was. She said flat out that she knew she was going to die. There’s nothing more they can do, she said, an edge of anger in her voice.
I asked what her goals were. She didn’t have any that she could see were possible. Then I asked what her fears for the future were, and she named a litany: facing more pain, suffering the humiliation of losing more of her bodily control, being unable to leave the hospital. She choked up as she spoke. She’d been there for days just getting worse, and she feared she didn’t have many more. They’d talked to her about stopping life-prolonging therapy and going on hospice, but she didn’t see how that could help her.
Someone in her position who was offered “death with dignity” — assisted death — might have taken it as the only chance for control in the absence of other options. 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. We broke the news to Hunter, then just 13 years old, that Peg could not teach her anymore, that she was dying. Hunter was struck low. She asked if she could see Peg one more time. We didn’t think so, we said.
A few days later, however, we got a surprising call from Peg. She wanted to resume teaching. She’d understand if Hunter didn’t want to come. She didn’t know how many more lessons she could manage, but she wanted to try.
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.
“She was focused on the main chance,” Martin later said. “She came to a clear view of how she wanted to live the rest of her days. She was going to be home, and she was going to teach.”
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.
Nonetheless, he said, “She was more alive running up to a lesson and for the days after.” She’d had no children; her students filled that place for her. And she still had some things she wanted them to know before she went. “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.
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.
(Published with permission from Penguin)
Being Mortal: Medicine and What Matters in the End
Author: Atul Gawande
Publisher: Penguin;
Pages: 282
Price: Rs 599
EASING INTO THE END
On the arterial Ring Road, Shanti Avedna Sadan near Safdarjung Hospital is one of the few hospices in New Delhi for terminally-ill cancer patients. The trust runs two other centres — in Mumbai and Goa. “Our centre helps improve the patients’ morale and they can better deal with their condition when they are pain-free,” says Sister Ancy, the administrator. Shanti Avedna takes in patients free of cost and from the time they are checked-in, the centre becomes their home. The recreation centre, garden and a homley fragrance make it look less like a hospital. In sets of two, the beds are arranged across a large hall and each bed has a separate couch for family members to sleep on. “The support of family is extremely important for the emotional and physical health of the patient,” says Sister Ancy.
Karunashraya in Bangalore is a 55-bed palliative centre for patients in the advanced stages of cancer. And though most patients are from lower socio-economic backgrounds, those from middle and upper income brackets are also coming forward as awareness increases and palliative care is no longer seen as “abandoning” one's loved ones. Cipla Palliative Care & Training Centre in Pune treats the individual as a whole and not just the symptoms. Facilities in Kolkata like the Ruma Abedona Hospice focus on counselling and bereavement support, besides pain management.
Home healthcare services like CanSupport and Portea offer assistance to patients at home. Most hospitals like Tata Memorial Centre (Kolkata) and Bangalore Baptist Hospital also offer this facility. While it costs money, doctors consider homecare to be more effective because of the emotional support and the familiarity of surroundings. “The folks at Baptist visited my mother every month or so and they were phenomenal: kind, caring, willing to listen,” says the son of a terminally-ill patient.
