Helping patients find their way to 'a good death'
With a little help from real-life patients, internists worked through some difficult end-of-life issues
From the June 1999 ACP-ASIM Observer, copyright © 1999 by the American College of Physicians-American Society of Internal Medicine.
By Edward Martin
NEW ORLEANS— was alive with the rhythms of Saturday morning and the annual New Orleans jazz festival weekend as Charles and Cookie Moore made their way to the Morial Convention Center. There, in a softly lit auditorium, they settled into chairs and prepared to talk to a group of internists at Annual Session.
Charles B. Moore, FACP, 72, has esophageal cancer. He came to Annual Session to talk about his condition and how he is facing end-of-life care issues. He was joined by another patient, Anne Musso, a New Orleans resident who is undergoing palliative care for cancer.
The Moores talked easily with Bernard Lo, FACP, a medical ethicist from the University of California, San Francisco, and Chair of the College's End-of-Life Care Consensus Panel. A square-jawed cardiologist with a gravelly voice, Dr. Moore said that he felt reasonably well, lamenting that he missed smoking his trademark pipe. At that point, Dr. Lo gently focused the discussion on Dr. Moore's future.
Numerous church groups were praying for him, Dr. Moore laughed. "God is probably getting tired of hearing about me," he said.
The goal of the panel was to underscore the reality of end-of-life care from the perspective of patients, not caregivers. Joanne Lynn, FACP, director of the Center to Improve Care of the Dying at George Washington University and author of "Handbook for Mortals," a guide for the terminally ill, said she hoped that the panel would help transform end-of-life care from an abstract concept into a mainstream part of internal medicine practice.
"We're laying out a map for the internists of America," she had explained at an earlier, day-long session on how to implement an end-of-life program and to measure its quality. "We are confident that if we follow this map, we can get good results."
Guideposts
Throughout Annual Session, internists were given guideposts for that map. For example, in a workshop on how to teach residents end-of-life care, oncologist David E. Weissman, FACP, who directs palliative medical education at the Medical College of Wisconsin, exhorted residency and hospice directors to jolt young doctors out of their fear of prescribing adequate pain relief—what Dr. Lynn called "opioidphobia"ȃand of revealing emotions when delivering bad news. "What's the worst thing that will happen?" Dr. Weissman asked. "Your patients will know you care."
But internists explained that many of the difficulties they encounter in end-of-life care are much more complex than becoming emotional in front of patients. A number of internists, for example, said that they struggle with how to best use hospice care facilities. Many angrily denounced Medicare rules they fear will subject them to fraud charges if a patient lives longer than the allocated 180 days. Sixty-five percent of all U.S. patients who die are covered by Medicare.
"We're repeatedly criticized for not sending patients to hospice soon enough," noted Timothy E. Quill, FACP, director of the department of medicine at Genesee Hospital in Rochester, N.Y. He added that for non-cancer patients, pinpointing prognosis is nearly impossible. He said that because internists are afraid to keep their patients in hospice programs too long, they are waiting until the last minute to refer their patients to hospices. As a result, average length of care at some hospices has dropped to less than three weeks.
A number of internists also recounted difficult experiences when it came to withdrawing treatment. Steven A. Levy, FACP, an internist from Erie, Pa., described a stroke victim who awakened to bid his family goodbye. One physician estimated that 10% of those removed from ventilators recover.
Cases like those led to discussions about double effect, in which pain medication suppresses respiration and hastens death, and terminal sedation, in which pain drugs are increased until the patient loses consciousness and then dies naturally. Dr. Quill cited a patient at his hospital with metastatic adenocarcinoma of the lung whose only request was to die a painless, peaceful death. Despite daily increases of oral opiods and other medication, however, his pain increased and delirium and paranoia set in.
"It was clear that he was dying in the worst possible way he had imagined," said Dr. Quill. "There was no doubt that if euthanasia had been available, he would have taken it." Eventually, physicians at the hospital increased barbiturate infusions until the patient lost consciousness and died three days later. Although unsettling, Dr. Quill added, "it became the least bad way that we had to intervene."
Public demand
Clearly, medicine has made some advances in end-of-life care in the lifetime of many physicians. During a break in a workshop on establishing end-of-life care programs in local hospitals, Arthur D. Hayward, FACP, a general internist from Portland, Ore., recalled medicine when he began practice in 1972. "We were ashamed when a patient died," he said. "If someone died, there was a ritualized statement: 'We did everything we could.' It would have been unthinkable to say, 'We did almost everything we could.'"
Dr. Weissman said that part of the impetus for change has come from advances in treating cancer that prolong life but leave patients in excruciating pain and nausea, prompting organizations like the World Health Organization to push for better end-of-life care globally. Great Britain and Australia, he noted, have long recognized palliative medicine as a specialty, and the idea of board certification has been catching on in the United States.
Gail J. Povar, FACP, a Silver Spring, Md., internist and an ethics professor at George Washington University, added that an even more compelling factor has been pressure from the public. "When the general populace began to focus on assisted suicide, it forced the medical community to concede how badly we have been managing the end of life," she said.
Finally, some say the influence of Jack Kevorkian, who was recently convicted of second-degree murder for assisting in a suicide, has helped galvanize the issue. "Jack Kevorkian has been the best thing that could happen to my business," said Dr. Weissman, referring to advances in palliative care education. "He pushed the issue of death in everybody's face."
Finding hope
As physicians at many of the presentations made clear, identifying end-of-life issues and producing good end-of-life care can be two very different things. The challenge, physicians seemed to agree, is how to help patients achieve what Anne Musso referred to as "a good death."
Back at the Saturday morning presentation, Ms. Musso took her seat in the auditorium, accompanied by her adult son, Bryan. When Dr. Lo asked what frightens her the most, the smile on her face broadened into a grin. "Well, "I'm terrified of electricity and fire." The audience laughed.
At age 46, with breast cancer that has metastasized to her brain, lungs—and, she had found out the day before, her left kidney—Ms. Musso was receiving palliative care only. She said the decision was medically an easy one; she could receive no more radiation.
Her son, however, elaborated that there was a deeper reason for her seeming acceptance of her treatment and her fate. "She has tremendous faith," he said. "It's hard to talk to her and not realize she is happy with where she is going to go."
As Dr. Lo questioned her, concerns internists had grappled with in repeated sessions on palliative care and end-of-life issues came forth. One of the primary questions: What will constitute a good death for Ms. Musso?
"Taking away the pain is all I can do now, so I'm OK with that," she said. Earlier, Drs. Lynn, Povar and others had cited advances in palliative care ranging from new means to relieve dyspnea to nerve blocks and palliative radiotherapy. They concluded that physicians have little to fear legally and ethically from prescribing high levels of opiates and other controlled drugs for comfort.
Ms. Musso also noted that she wanted to stay home. For 80% of the terminally ill, said Dr. Lynn, a good death is one that comes at home.
Hospice care was enabling Ms. Musso to remain at home, even at the stage of illness when cancer fatigue caused by anemia confined her to bed for days. While she noted that she has gained 50 pounds because of medications, she added that hospice workers help her bathe and do daily chores.
At his session on palliative care, Dr. Weissman pointed out that too often, physicians unnecessarily worry about dashing a patient's hope. "Because there's no hope for cure doesn't mean there's no hope for other things," he said. "There's hope for no pain, hope to live longer than expected, hope to see my family. Hope is bigger than just a cure."
When Dr. Lo asked what preparations she had made for death, she described her advanced care directions and efforts designed to help her only son cope after she dies. "I've started a memorial book to make it easier for Bryan," she said. " 'Would she like this song? These flowers?' After this is over, I don't want him to worry whether I wanted this or that." Often, noted Dr. Moore and others, caregivers are neglected before and after the patient's death. Even the patient's internist is often guilty of post-death abandonment.
Finally, an internist in the audience rose to ask Ms. Musso if she had been nervous sitting in front of a room of doctors discussing her death. Her answer: not at all. "If I had to say one thing, it would be that I am glad that you, as doctors, are learning to talk to patients about death. I'm just sorry this whole room is not full of doctors learning to tell people that dying is okay."
Six ways to change how you approach end-of-life care
- Consider the future. Uncertain about prognosis? Ask, "Would I be surprised if this patient died in the next six months?" and act accordingly. Communicate with patient and family. Set priorities—symptom relief, spirituality, family support, advance care directives.
- Identify needs. For quality improvement in care, focus on what the patient and the family want—location of death, pain relief, family support, honest prognosis, avoiding unexpected crises—and concentrate on that area. Get feedback on your performance from family, caregivers and colleagues.
- Help patients set their priorities. Ask, "If you died soon, what would you leave undone?" Use each patient visit to intensive care to rehearse with the patient and family what might happen the next time.
- Pay attention to pain. Clinically, provide adequate pain relief, including medications for dyspnea.
- Keep in touch. Don't abandon the caregiver after death. Visit, call or send a card.
- Push for change. Lobby elected officials for changes in Medicare rules, research funding or demonstration programs.
Internist Archives Quick Links
Attention Lab Owners:
Get Live Answers at a Price You Can Afford
MLE offers ACP members superior service, affordability, online options and other special features.
