Section 3 Exercise 6CaregivingBeing a hospice physician
Clinical correlate 6: Hospice eligibility
Read the following essay and answer the study questions.
Caroline Wellbery, "Living well before we die"
Imagine having a passion for dying. Imagine 1500 doctors and nurses at their annual meeting in New Orleans, gathering to support each other in that passion. These men and women are America’s hospice workers, and their conference is sponsored by the American Association of Palliative Care and Hospice Medicine.
In the hotel elevator, I ask a man whose nametag reads “Ron,” how he is finding the meeting. “Uplifting,” Ron says, stepping from the elevator.
I’m a family doctor and I’d like to know what’s uplifting about dying. I start the day attending a lecture on prognosis. The speaker, John Finn, from a hospice in Michigan, presents ‘four trajectories,’ four patterns that show different time frames of dying.
First, Finn says, showing a slide set of graphs, there’s sudden death, where a person at the top of his game is killed in an accident, or has a heart attack without warning. Only 10% of us will die that way. It’s much more likely that we’ll die of cancer, he says, pointing on the screen to a graph, which shows a relentless downward curve, with the steep slope of a tombstone. Or we’ll die of organ failure—say if high blood pressure ruins our kidneys or heart. This involves a gentler decline punctuated by dips and partial recoveries. Finally, Finn shows a graph for people dying of frailty—what some simply call old age. That’s my mom, I tell myself, looking at the long, long ramp sloping slowly downward across the screen.
After diagnosis, how much time do we have left? Another slide shows the life expectancy for different cancers. Some kill us slowly, others are ‘explosive.’ But regardless of the biology, there’s what Finn calls the doctor’s ‘ritualized optimism.’ Doctors routinely predict that patients will live five times longer than they actually do.
This isn’t the kind of knowledge doctors I hear about often in my medical practice. Especially when towards the end of his talk Finn mentions that patients are often able to foretell precisely on what day they will die. This is just the first inkling I get of the mystery and the epiphanies of dying that every hospice worker knows well and can illustrate with dozens of stories.
The stories start simply, with the alleviation of pain. One doctor tells about Alice, a 76 year-old woman whose oncologist had ignored her intolerable pain from the cancerous tumors in her chest and under her arms. When she finally entered hospice, the doctor put her on a methadone pump. Now she can die at home and she’s happier than she’s been in 3 years of suffering. Hospice, the doctor quotes her as saying, has finally given her her life back.
“You can make them feel better,” a hospice nurse agreed. “You make them live well until they die. People don’t know they can.”
Managing pain is important. But there’s a lot more to comfort care—the intangibles, like getting people on the right spiritual path. Death is a time of transformation and reckoning. “Some people ‘get it’ on their way out. It’s never too late.” Patrick Clary, medical director of a New Hampshire hospice, remembers when he was just starting out, on his way to visit a patient with the ‘worst of worst’ complications—a small bowel obstruction. He was dreading this home visit. Hardly had he arrived, when his patient said: “You know, I’m the luckiest man alive.”
“Lucky?” Clary could hardly believe his ears.
“Death has given me the chance to find out how much my family loves me.” At the end of life, often it’s the patient who teaches the doctor. There is a lot of growth at the end of life—I hear this over and over at the conference from doctors and nurses and chaplains alike. Death, for some at least, is an opportunity, and this opportunity becomes the doctor’s or nurse’s as well.
I spoke with outgoing AAHPM president Jim Cleary at a wine and cheese reception in his honor. “The reward of being palliative care physicians?—Being exposed to the intimacy of people’s lives. People open doors to you when they are faced with these decisions. We are given the opportunity to go into people’s hearts, minds and souls.”
“Ask your patients, your patients have the answers,’ Jim Cleary tells me.
What answers, for example? What have you learned?
“Being a hospice physician actually takes away the fear of death, because I address it all the time. I try to appreciate each day as best I can because I never know when my life is going to end. That’s what patients teach you.”
There are the other stories, extraordinary ones. In one case, the nurses found out that the daughter of one of their patients had died. They didn’t want to tell her—why sadden her end with this news? Shortly afterwards, as the woman’s own death approached, she had a vision. “I see my daughter waiting for me,” the patient said, staring amazed at what no other person could see. “I didn’t realize-–she must’ve died.” And so the nurses, who were used to patients greeting their deceased relatives, didn’t have to hide the truth from her after all.
Asking participants at the conference what it’s like taking care of the dying, I hear a lot of talk about patients being in touch with the ‘other side.’ Do you have to have religious faith in order to die in peace? I want to know. The hospice doctor I’m talking to has some reassurance to offer, even to me. “If you are a very self-actualized person and believe you’ve had a good life,” I am told, “you can have a good death.”
A discussion about spirituality reminds Patrick Clary, the doctor from New Hampshire, of a patient, a ‘non-believer,’ who died at the in-patient hospice where he is medical director. In the weeks of his dying, this man used to engage the chaplain in theological discussions. He was actually a very spiritual person—anyone is, Clary adds, whether they’re religious or not, if they try to understand the meaning in their lives. Eventually the patient died. Time came to dictate his hospice summary. Clary leafed through the medical record, until he got to the description of the man’s final hours. The nurse’s notes had included his final word. It was: “Wow!”
Are hospice workers different than other doctors? Most everyone I talked to said yes. Perry Fine, an MD who recruits palliative care doctors to his program, says that he looks for specific qualities. He wants people who “meant what they wrote in their medical school applications.” He also looks for doctors who are more ‘person-oriented’ than ‘system-oriented,’ collaborators rather than loners, those who look for personal rather than financial rewards.
“If they want financial rewards, they’re in the wrong business,” quips another doctor at the table where we are sitting.
“Our souls remain intact,” Daurie Smithline, a hospice physician from Florida says.
And that’s one reason, I’ve discovered, why the meeting is so inspiring. But being a hospice doctor can be lonely, Dr. Fine says, speaking for many others who tell me the same thing. “People don’t understand what a hospice doctor does. There’s not a general validation of our work.” Bringing all that psychosocial stuff and spirituality into one’s practice is so different from the way cardiologists and oncologists provide care. For like to meet with like, to arrive at this hotel, to mingle with compassionate people who “engage the patient as a human being as opposed to a disease,” Cleary has told me, “is a bonding experience.”
Later, in a talk on “The ethics and practice of loving care,” Ira Byock, author of the bestselling death primer, Dying Well, enumerates the kinds of love we know— neighborly, parental, filial, romantic, universal. He lists the qualities of love—well-wishing, possessiveness, exclusivity, longing, physical touch, the desire for something to be given in return--and asks the audience to match the different kinds of love with its qualities. In the large auditorium, lots of hands shoot into the air. In what other medical setting does anyone talk about love? Very few that I have known. I find the whole experience uplifting.
Study questions
- What kind of personality is best suited for hospice work, according to this article?
- How well suited are you to this sort of role?
- In an earlier discussion, you were asked to reflect on your own death and how your own feelings about dying might influence your behavior towards others who are dying. Here the equation is turned around. What effect does work with the dying have on the caregivers’ attitudes?
- Read Donald Hall’s poem, “Last days” if you haven’t already. Who are the participants in Jane Kenyon’s death? How do her husband’s caregiving tasks evolve over time? What role does the doctor play in this poem? What might you learn from this poem regarding the physician’s role in caring for the terminally ill?
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