Doctors Are Learning How to Treat Terminally Ill Patients With Kindness, Tact and Good Medical Judgment
May 30, 2000
By DENISE GRADY
PLANNING FOR DEATH
The patient was in his 40's, with liver failure, hoping that a transplant would save his life. But when a severe infection set in and his kidneys failed, hope ran out. He was taken off the transplant list.
"Without the transplant, his prognosis was death," said his physician, Dr. Susan Dorr Goold, associate director for ethics and health policy at the University of Michigan Medical School. "The question was how." Did he want dialysis? A respirator and other aggressive treatment? He was too ill to answer. And he had left no instructions or legal documents -- no living will, no durable power of attorney naming someone else to decide for him.
It could easily have turned into a medical horror story. But it did not.
"He had a good death, surrounded by his family," Dr. Goold said. "He was comfortable. It was not happy -- he was dying, and young. But it was not awful."
How was it done, in an era of high-tech medicine when aggressive treatment seems to be the norm?
The answer is low-tech and old-fashioned, though by no means simple: conversation.
"We had to have a serious discussion with his wife about what she wanted us to do for him, what her goals were," Dr. Goold said. As next of kin, the wife was entitled legally to make decisions for him, even though he had not signed anything to that effect.
They went to a quiet room, and Dr. Goold began by asking her what she understood about her husband's condition. "She knew he was doing really poorly, and this was maybe the time to make some hard decisions," Dr. Goold said. They spoke for 30 to 45 minutes, when the wife disclosed that her first husband had also died after a long, painful illness.
"We decided not to pursue dialysis or intensive care, not to prolong the end," Dr. Goold said. "That's what most people decide." They arranged a second meeting, to which the wife brought family members, including her teenage children.
"It was beautiful," Dr. Goold said. "They were very supportive of her and her decision to withdraw treatment. They gave her confidence she was doing the right thing."
The absence of a living will or other documents was no impediment. Although such instructions may help to guide decisions when patients face terminal illness, doctors say there is no legal document that can take the place of talking to one another.
Joseph LaBarbera, a lawyer with the New York firm Lifshutz, Polland & Hoffman, which specializes in medical issues, said, "It has to be a team effort." He recommends that while a patient in the hospital or a nursing home is still competent, the patient and family meet with a social worker and itemize specifically what the patient and family will want done if the patient deteriorates. "The doctor keeps a copy, one is put into the patient's records and hopefully the relative keeps it as well," Mr. LaBarbera said. But even then, he added, written instructions may not be specific enough.
For that reason it is important for the patient to name a proxy to make decisions.
"Then the doctor has somebody to talk to," Mr. LaBarbera said. "It's often before you get to the resuscitation point that the problems come up." The willingness to talk and to rethink plans is especially important when patients have illnesses with unpredictable courses. In some cases, the best option may be to try treatment like a respirator or a feeding tube, with the understanding that if it does not work as hoped within a certain time, it will be discontinued.
Dr. Joanne Lynn, director of Georgetown University's Center to Improve Care of the Dying, said: "We had one patient who specifically said, 'I want a trial of seven days, and if it looks like I can't come off the ventilator, I want it stopped and I want to be sedated.' And that's exactly what was done.
"The patient was sort of vaguely aware. It was explained, 'We've reached this point, and we don't think you can pull through. Do you want time to think it over?' He held up his hand and sort of waved."
The give and take can be harder than it sounds. Dr. Goold, who has had years of practice, said: "I've seen doctors in training try to talk to patients about end-of-life issues and totally flub it. I've heard of people going in and dropping a fatal diagnosis just like a bomb, and then saying, 'So, what do you want us to do if your heart stops?' "
There is a growing awareness among doctors and patients that too many people die in pain and fear, cut off from loved ones and from the chance to come to terms with death and to say goodbyes. Treating terminally ill patients with kindness, tact and good medical judgment may come more naturally to some doctors than to others, but the American Medical Association has decided that the skills can be learned. The group has developed a two-and-a-half-day course, "Education for Physicians on End-of-Life Care." So far, it has been given seven times, in different cities, to groups of 100 to 150 doctors each time.
Dr. Linda Emanuel, a creator of the course and vice president for ethics at the association, said the program coincided with another trend: the "renewed search for the heart and soul of medicine," the mission of helping patients that draws many people to medicine in the first place.
"A lot of doctors and the public feel that medicine isn't as caring as it should be and we've lost our way," Dr. Emanuel said. "But if you can do care at the end of life, you can do medicine."
The program could be described as a crash course in human relations and the nuts-and-bolts medical details of taking care of people whose bodies are shutting down. Participants work in small groups and are coached on how to break bad news to patients, how to recognize depression and anxiety and how to help patients and families plan treatment as illness progresses.
The doctors learn details of pain control that were not taught in medical school, as well as how to use drugs to ease shortness of breath, nausea, seizures, agitation and other problems. They are urged to encourage family members to lie in bed with a dying patient if they wish, and to tape signs to the patient's door asking doctors and nurses to leave the family alone for a while.
They are taught how to turn off a respirator in a way that does not leave the patient gasping for air. They learn how to help prepare a patient's family for the physical changes that take place as a person dies. And they talk about their own grief and feelings of failure when patients die, and ways to avoid burning out.
At a course in March, about half the participants wanted to spend extra time on pain control, and many were riveted by a session called "last hours of living." At that session, Dr. Frank Ferris, medical director for palliative care at the San Diego Hospice, noted that some dying patients lost the ability to close their eyes, a condition that most families find quite upsetting. Could anyone explain it? Dr. Ferris asked.
Not one of a dozen doctors in the room could. The explanation, Dr. Ferris said, was that when people waste away, a fat pad behind the eye also shrinks, causing the eye to sink in and to pull the lid back with it, leaving the eye partly open.
It was worth knowing, Dr. Ferris said, because the simple explanation could often ease a family's distress.
Although doctors who attended the March session seemed enthusiastic about the course, some had reservations about the segment called "advance care planning." Ideally, this part is supposed to begin when a patient is healthy and is designed to help doctors and patients determine the treatment patients would want -- or not want -- if they could no longer make their own decisions.
Recognizing that living wills are often too vague to cover many real-life situations, the program includes a series of work sheets or questionnaires given to patients to help them explore their values and feelings about the kinds of illnesses that most people dread, including permanent coma, severe dementia, severe stroke and terminal illness. The work sheets are not meant to be used as legal documents, but as points of departure for discussions.
The course describes the planning as "a process, not an event," and says that whenever possible doctors should initiate conversations with patients when they are well, encourage them to fill out the work sheets and review and update them periodically.
"It's the discussion that matters, not the piece of paper," Dr. Ferris said.
The patient's proxy, chosen to make decisions when the patient cannot, should take part in the discussions, which can occur over several office visits, rather than taking up too much time at once. Nurses and social workers can also help, so that doctors do not have to do it all.
Some doctors who attended the course thought the work sheets were fine in theory, but impractical: too time-consuming for doctors and too complicated for patients. One doctor said he preferred the work sheets to plan his own care and that of his family, but did not think that most doctors or patients would use them.
But another conference participant, Dr. Michael Stellini of Wayne State University in Detroit, said he hoped to persuade his colleagues to try the approach because surveys had shown that the majority of patients at his hospital wanted to discuss advance care planning -- but that doctors were not doing it.
Dr. Ferris said that doctors who did not want to spend time on advance care planning with healthy patients would probably wind up spending even more time on the same issues -- with worse results -- if they put it off until a crisis hit.
And in a lecture at the course, Dr. Ferris told doctors that the way they treated dying patients would set an example for younger colleagues and dictate how they themselves would be treated at the end of life.
"We're all going to die," Dr. Ferris told his audience. "Are you ready for your turn?"
What Patrick Would Want
What happens to people who have no health-care proxy or living will, and who wind up being kept alive by machines with little or no hope of recovery? In New York at least, for life support to be withdrawn, state law requires "clear and convincing" evidence that the patient would not want such treatment. That requirement can in effect punish people who never put their wishes into writing.
But one hospital has made a special effort to help patients who lack written advance directives. Navah Harlow, director of the Center for Ethics in Medicine at Beth Israel Medical Center in Manhattan, said, "If a patient has told his loved ones what his wishes would be, and has lived life in a certain way so there is no doubt, can't we find a way to honor his wishes, to listen to his oral advance directive, as related by family and friends?"
She and others at the hospital have created a system in which friends and relatives can meet with her and tell her what they think or know the patient would have wanted. Then, the case is presented to an ethics panel.
The process is not fast, and patients sometimes die before it can be completed. But, Ms. Harlow said, it is imperative to go slowly.
"I tell the families, 'Let's go through this process, because two or three months from now you'll be lying in bed, wondering if you acted too fast, and in the long run this will give you added piece of mind.' "
"I will then ask family members to write me a letter giving me clear and convincing evidence that this is what they know the patient would want. This is for the patient's wishes, not the family's wishes. We honor these oral advance directives. I have binders full of the most beautiful statements, from people of every level of education, in many different languages."
Last year, Patrick Bedford, a 67-year-old actor from Dublin who performed on Broadway and in films, was treated for cancer at Beth Israel and eventually was put on a respirator. Mr. Bedford had no living will or health care proxy, but at Ms. Harlow's suggestion, friends and relatives wrote letters on his behalf.
Mr. Bedford had been an uproarious fellow, a singer and dancer and storyteller who loved to give parties. One friend said that Mr. Bedford had declared he knew he had a tumor and wanted to die.
"He told me he never wanted to be hooked up to any kind of machines," the friend wrote. "Let him go to heaven to spin his tales and tell his stories, to be with all the other cast of partygoers the way he was meant to be and has not been for the last couple of weeks and will never be again."
Another wrote, "We are certain that a man like Patrick would not want to be forced to live artificially."
"And we also want to respect his life," she continued, "how he lived it and how he would like to have it end."
The letters were clear and convincing, Ms. Harlow said. But Mr. Bedford died before doctors could act on them.
A Peaceful Death Without Tubes
Frank Finocchio and Bettina, his daughter, in the Queens apartment where they cared for his dying wife, Phyllis. They decided not to use feeding tubes or a respirator.
On a crisp, sunny morning a year ago, in the Queens apartment that had been her home for more than 40 years, death came gently for Phyllis Finocchio. Gazing into her husband's eyes, she squeezed his hand, and then let go of it for the last time.
"She died very peacefully, the way we wanted it," said her daughter, Bettina, who had helped care for her since 1988, when the family first learned that Mrs. Finocchio had Alzheimer's disease. "And so as a family, we're at peace."
In an era of high-tech medicine, a quiet death like Mrs. Finocchio's may be harder to arrange than one encumbered by tubes and machinery, and attended by strangers.
After their decision to care for her at home, one of the family's most important and most difficult choices came when Mrs. Finocchio began to have trouble eating, like many people with Alzheimer's. Four million Americans have dementia, and most lose the ability to feed themselves and eventually cannot eat at all, because of difficulty swallowing.
They begin wasting away, and some doctors and many nursing homes recommend feeding tubes, which are inserted through the nose or through an incision in the abdomen.
Families are sometimes pressured into consenting because they are told that without a tube, their loved ones will die painfully, from thirst, starvation or choking.
But Ms. Finocchio learned from the Alzheimer's Association, other medical groups and a hospice program that dying people who can no longer eat do not suffer from hunger and thirst, and can be kept comfortable with ice chips and swabs to moisten the mouth and lips.
The cessation of eating is often a natural part of the process of dying, and most patients are more comfortable without fluids, which can cause nausea and increased lung secretions. Dehydration, described by one doctor as "nature's anesthetic" in dying patients, leads them to lapse into comas and die peacefully.
By contrast, tube feeding can cause suffering in dementia patients. It has not been proved to prolong their lives, and it can cause diarrhea, bloating and infections. It does not prevent choking, because patients still choke on their own secretions.
In addition, demented patients often try to yank out the tubes, leading to the patients' being placed in restraints. Most then find the restraints so upsetting that they become agitated and wind up being sedated.
Ms. Finocchio had seen her mother try to pull out intravenous lines when she was hospitalized, and knew she would pull out a feeding tube.
The family decided there would be no tube. They fed Mrs. Finocchio when she could no longer feed herself, and froze broth into cubes to help keep her mouth from becoming parched when she had trouble swallowing.
"This was not a selfish act," Ms. Finocchio said. "It was not an easy way out. It's very painful to watch someone die like that. But we just felt it was the best thing for her. I think she would have wanted it that way."