Editor’s Note: The following essay was first published in 2011. It is being reprinted here with permission from the author and publisher. In 2020, the American Academy of Hospice and Palliative Medicine (AAHPM) now includes more than 5,000 members; the annual meeting convenes more than 3,200 attendees. The 2021 Annual Meeting of AAHPM will be held virtually from February 17–19, 2021. For more information, visit aahpm.org.
Caroline Wellbery, MD, PhD
Imagine having a passion for dying. Imagine 1,500 doctors and nurses at their annual meeting, 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 Academy of Hospice and Palliative Medicine (AAHPM).
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.
Thoughts From a Family Doctor
Ron’s comment seems jarring to the perception of death I see every day as a doctor in a hospital. Typically, on hospital rounds with the residents, we stop to see patients in the intensive care unit. I remember one patient in particular. As a resident read to me from his notes, I saw her through the glass—attached to every tube imaginable.
The patient’s body from our point of view was a disassembled contraption divided into heart, respiratory, kidneys, and skin, which the machines were trying to pump into cohesion. The ventilator sighed and sighed in the rhythm of breathing. The only semblance of human life was the TV blaring. I heard canned laughter on the other side of the pane.
She had been at the hospital for 1 month, suspended among tubes and hanging by a thread. Some days, when there were not many other patients to see, I would go in and say, “Hi, I’m the family doc. I just want to find out how you are.” I did this because I knew her previously when she would come to our clinic with her diabetes, smoking habit, and blood pressure always out of control. I had seen her once or twice, lifting herself onto the exam table. Last visit, her eyes filled with tears when she asked me about God, though I had no useful answer.
At this point, the ICU doctors had taken over. Their approach to dying was a web of tangled plastic and adjustable knobs. I shrank away from her and followed the resident through the double doors.
Shared Experiences in End-of-Life Care
Now, I am a voyeur again. Except this time, I am spying on the caregivers, hoping to discover how they see dying as “uplifting.” I start the day attending a lecture on prognosis. A slideshow presentation conveys scientific facts, which the speaker, John Finn, MD, of Hospice of Michigan in Southfield, highlights with a laser pointer.
He presents “four trajectories” that show the different patterns of dying using graphs. The first graph is sudden death, where a person is killed in an accident or has a one-stop heart attack. Dr. Finn says only 10% of us will die that way. A lot more of us will die of cancer, the second graph, showing its relentless downward curve in the shape of a tombstone. Then, there is organ failure—typically kidneys or heart—with the slope punctuated by dips and partial recoveries. Finally, Dr. Finn shows the graph for people dying of frailty—what is often simply called “old age.” That’s my mom, I tell myself, confronted with the long ramp slowly descending across the screen.
After diagnosis, how much time do we have left? On another slide, Dr. Finn shows the life expectancy for different cancers. Some kill us slowly, others are “explosive.” But regardless of the biology, there is what Dr. Finn calls the doctor’s “ritualized optimism.” Doctors routinely predict that patients will live longer than they actually do.
This is not the kind of knowledge I bandy about in my medical practice, where we mull over which blood pressure drug is the most effective in reducing mortality.
Toward the end of his talk, Dr. Finn mentions that patients are often able to foretell precisely on what day they will die. That does not sound scientifically plausible to me, but I listen with curiosity and a willingness to open my mind to the mystery and the epiphanies of dying, which every hospice worker knows well and can illustrate with dozens of stories.
These stories start simply with the alleviation of pain. During one of the breaks, I join a couple of hospice caregivers who are sitting around a table, sharing experiences and drinking coffee. I don’t know any of these soft-spoken people here, but their quiet passion touches me. One doctor tells a story about Alice, a 76-year-old woman whose oncologist had ignored her excruciating pain from the cancerous tumors in her chest and under her arms. Upon entering hospice, the doctor immediately put her on a methadone pump. Alice is now able to die at home and is happier than she ever was during those 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 in a hand-woven jacket says, nodding vigorously. “You help them live well until they die. People don’t know they can.”
A Time of Transformation and Reckoning
Managing pain is important, but death is also a time of transformation and reckoning. “Some people ‘get it’ on their way out. It’s never too late,” says Patrick Clary, MD, a medical director of a New Hampshire hospice. Then, sheepishly, he remembers his own transformation, a process of exposure and discovery. As a young man new to hospice work, he’d been on his way to attend to a patient with the “worst of the worst” complications—a small bowel obstruction. He was dreading the home visit. He almost bolted when his index finger reached for the doorbell. Hardly had he entered the darkened room when his bed-ridden patient greeted him saying, “You know, I’m the luckiest man alive.”
Dr. Clary never expected this statement would come from a patient in his condition. “Death has given me the chance to find out how much my family loves me,” the man explained. Dr. Clary sat at his bedside, slack-jawed and dazed. He didn’t know death could give you something like that. There is a lot of growth at the end of life—I hear this over and over at the conference from doctors, nurses, and chaplains alike.
Often, it is the patient who teaches the doctor. At the meeting’s wine and cheese reception, I spoke with outgoing AAHPM President, Jim Cleary, MD. “What is 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,” Dr. Cleary told me.
“What answers, for example? What have you learned?” I asked.
“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,” Dr. Cleary explained.
Back at the tables in the meeting rooms, there are other stories—extraordinary ones. In one horrible coincidence, a nurse found out that her patient’s son had unexpectedly died. The nurse didn’t say anything to avoid burdening her patient. Shortly afterward, as the woman’s own death approached, she sat up in bed with a vision. “I see my son waiting. How can that be?” Then she fell back onto her pillow and answered her own question: “I didn’t realize—he must be dead.” Her nurses, who were used to patients greeting their deceased relatives, looked at each other, nodding in acknowledgment. They understood that the dying know and see things.
The Other Side: Spiritual Concerns
In these conversations, I hear a lot about patients being in touch with the “other side.” But what if a person doesn’t necessarily believe in an afterlife? Do you have to believe in a religion to die in peace? I want to know. The hospice doctor I’m talking to offers some reassurance, even to secular folks like me. “If you are a very self-actualized person and believe you’ve had a good life,” he concedes, “you can have a good death.”
Dr. Clary, the doctor from New Hampshire, interrupts. He remembers a patient, a “nonbeliever,” who died at the in-patient hospice where he is the 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. “Everyone is,” Dr. Clary adds, “whether they’re religious or not, if they try to understand the meaning in their lives.” This man raised all the difficult questions about life’s purpose. Eventually, the patient died.
When the time came to dictate his hospice summary, Dr. Clary paged through the medical record, noting the relevant facts into his microphone until he got to the description of the man’s final hours. The nurse’s notes had included his last word. It was simply this, “Wow!”
Understanding Hospice Physicians
Are hospice physicians different from other doctors? Most everyone I talked with said, “yes.” Perry Fine, MD, a gray-eyed man who recruits palliative care doctors, said 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, and those who look for personal rather than financial rewards.
That integrity is why this meeting is so inspiring. “But being a hospice doctor can be marginalizing,” Dr. Fine interjects, “speaking for many others who’ve told me the same thing. People don’t understand what a hospice doctor does. There’s not a general validation of our work.” Bringing psychosocial matters and spirituality into one’s practice is so different from the way cardiologists and oncologists provide care. To arrive at this hotel and mingle with compassionate health-care providers who “engage the patient as a human being as opposed to a disease,” Dr. Cleary has told me, “is a bonding experience.”
The meeting is almost over, but I want to hear one more presentation: “The Ethics and Practice of Loving Care” by Ira Byock, MD, author of the best-selling guide “Dying Well.”
In the lecture, Dr. Byock enumerates the different kinds of love we know: neighborly, parental, filial, romantic, universal. Then, he lists the qualities of love: well-wishing, possessiveness, exclusivity, longing, physical touch, the desire for something to be given in return. Turning to the audience, he asks who can match each different kind 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 attended.
Finally, my thoughts return to that patient in the ICU, the diabetic smoker. One day, when we went down for our rounds, she was gone. The tubes had been cut loose, with the IV pump stood next to the stripped bed like a bereft guard. Searching for some human trace, the resident and I peered one last time through the glass pane into the newly sterilized room. The TV was still going, presiding over the emptiness. If only we had all worked harder, we may have found a better way for her to live out her last days.
As I leave the meeting, I think back to Ron, the man in the elevator, and his earnest lit-up expression. I understand him now. There is a compassionate world here that people should know more about. No wonder he found the whole experience uplifting.
DISCLOSURE: Dr. Wellbery reported no conflicts of interest.
Dr. Wellbery is Associate Professor at Georgetown University Medical School. She received her medical degree from the University of California, San Francisco, and completed her family medicine residency at Community Hospital, Santa Rosa, California. She also received her PhD in comparative literature from Stanford University and has devoted her career to the integration of art, literature, and medicine. She is currently working on an essay about the interface between art and science.
Reprinted with permission from Wellbery C: Living well before we die. Hektoen International: A Journal of Medical Humanities 3(2), Spring 2011.