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What the end-of-life conversation can bring

Terminally ill with cancer, Ed Pratt worked with a hospice nurse at his home in Plymouth. Terminally ill with cancer, Ed Pratt worked with a hospice nurse at his home in Plymouth. (Barry Chin/Globe Staff)
By Joan Anderman
Globe Staff / September 2, 2009

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PLYMOUTH - Ed and Catherine Pratt are fierce rivals. Their battlefield is a cribbage board, and competition is in full swing this summer, though Ed is nearing the end of his life. The couple faces off in Ed’s bedroom, on the ground floor of their North Plymouth home, where the Pratts’ daughter and her family live in a second-floor apartment. Most evenings Ed and Catherine listen to the pitter-patter of their 3-year-old granddaughter, Caleigh, running across her living room and down the stairs before she bursts in to ask for chocolate milk.

Afternoon card games and ebullient grandchildren - this is the stuff of life, and the reason 65-year-old Ed Pratt picked up the phone in February to tell his doctor he wouldn’t be returning to Huntington House, where he lived for long stretches last year while receiving radiation and chemotherapy at the VA Medical Center in Jamaica Plain. That was after his oncologist, Dr. Juan Vera, told Catherine Pratt that treatment wasn’t working on the cancer that had metastacized from Ed’s prostate to his bones and spinal cord.

“I asked the doctor if he could give me a ballpark number,’’ Catherine recalls. “He looked at me and said, ‘Four months. Six if you’re lucky. Let’s get Ed comfortable.’ ’’

With those words Vera initiated what many doctors, patients, and families never get around to having: a conversation about the end of life. The very idea of it is so loaded that a provision of the Obama administration’s health care overhaul to reimburse physicians for advance-care planning consultations with Medicare beneficiaries ignited a furor, with critics predicting the formation of “death panels’’ and the rise of government-backed euthanasia.

“Everybody is afraid of death; it’s part of being a human being. But this regressive thing happens when there’s a big public conversation,’’ said Don Schumacher, president of the National Hospice and Palliative Care Organization. “This legislation is an opportunity to begin. Between 2011 and 2028, 70 million people are going to die. That’s a lot of people to care for, and we need to have these conversations.’’

For Ed Pratt, talking openly with his doctor and family meant making the decision to discontinue chemotherapy, move back home, and begin hospice care, which focuses on a terminal patient’s comfort rather than treating the disease.

“I felt I’m just going to make the best of my last time on earth,’’ Ed said.

It’s been 40 years since Dr. Elisabeth Kubler-Ross published her groundbreaking book “On Death and Dying,’’ based on interviews with hundreds of terminally ill patients, in which she argued that patients can and should participate in decisions that impact the final stages of life. Those decisions range from picking a health care proxy to choosing whether one wants life-support treatment like a feeding tube or CPR. For all the strides that have been made in the past four decades - among them advances in end-of-life research and the growth of hospice - in many ways we still live in what Kubler-Ross called a “death-denying’’ society.

Professor Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana Farber Cancer Institute, has confronted the issue professionally and personally. Last fall Prigerson and her co-investigators published a study in The Journal of the American Medical Association examining how end-of-life care discussions between doctors and terminal patients affected the patients’ quality of life and that of their caregivers. They found that both patients and loved ones were likely to fare better, based on a variety of criteria. Yet many doctors are disinclined to broach the subject.

“Doctors are reluctant to say, ‘There’s nothing I can do anymore to cure you.’ They don’t want to make people feel hopeless,’’ Prigerson said. Yet “the data really speak to the importance of having these discussions. That said, you have to honor a patient’s willingness and receptivity and comfort. My dad was dying of pancreatic cancer - he was a physician - and he did not want to have this conversation. None of us could bring it up with him. He just did not want to go there.’’

By contrast, Ed Pratt is immersed in the details of dying. As part of his hospice care, he and his wife met last month with a chaplain to work on Ed’s final wishes, a document that will span everything from bedside prayers to memorial service music. Ed receives regular visits from a registered nurse to oversee pain management, a home health aide who provides personal care, a social worker to address the family’s emotional needs, and volunteers who provide companionship (and a cribbage partner) when Catherine, a department manager at Target, is at work.

“She’s a real sweetheart,’’ Ed said of his home health aide. “She’s the reason I’m nice and clean-shaven. I’m gonna be a star . . .’’ he sang in a wobbly croon.

With Ed no longer enduring the severe nausea and diarrhea that accompanied chemo, and with his pain and depression controlled by medication, his “personality is coming out,’’ said Jo-Ann Corr, a registered nurse with Hospice of Boston. “If patients come in early enough they can process the emotional and physical symptoms they’re experiencing. It’s scary. Ed and Cathy have come a long way.’’

The hardest part is starting, whether the conversation begins among family members at the kitchen table or in a doctor’s office - where the breakdown in communication can be traced back to school, said Dr. Susan Block, professor of psychiatry and medicine at Harvard Medical School and chairwoman of the department of Psychosocial Oncology and Palliative Care at Dana Farber Cancer Institute.

Skills in initiating and navigating end-of-life discussions are taught inadequately, if at all, in medical school, Block said.

“Doctors are competence junkies, and we tend to avoid things we’re not good at. This is one of them,’’ Block said. While a loose requirement for all students to have some training in end-of-life medical care has been instituted recently, she notes, most faculty maintain that there’s no room in the already jam-packed curricula - and that, Block believes, is a fundamental problem.

“No one would get out of medical school without learning how to take a basic medical history. And yet people do get out without really having been trained in having these end-of-life conversations, which I think most would see as core competency for a good physician.’’

In some ways, Ed Pratt considers himself lucky. He’s dying his way - surrounded by family, unburdened by treatment, writing articles for the church bulletin. He’s even rediscovered his sense of humor.

“The cancer, it’s not a funny thing. But if you can crack a joke every once in a while,’’ he said, “you can go through it in a less stressful way.’’

Joan Anderman can be reached at anderman@globe.com.

Points to consider in end-of-life talks

Frank conversations between doctors and patients about the end of life can take many directions. Here are some of the topics that specialists believe are critical to an effective dialogue.

■ First and foremost, what does the patient want from the conversation? Some want to discuss every detail, but others are overwhelmed by too much information. Sensitivity to an individual’s comfort level with candid discussion is vital.

■ Does the patient have a clear understanding of his or her prognosis? Only then can the doctor provide a clear idea, within the bounds of medical uncertainty, of what a patient can expect.

■ Has a health care proxy been appointed to represent the patient’s wishes if need be?

■ What kinds of procedures is he or she willing or not willing to go through at various stages of illness for a chance at more time? Does the patient want CPR, surgery, IV hydration, or life support treatment?

■ How does the patient want to use his or her time, and how can the doctor help the patient approach the last phase of life in a way that’s consistent with his or her values and goals?

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