Psychiatrists Needed to Help Patients Confront Death
Lamers convinced his friend’s surgeon to discharge him, and for the duration of his friend’s life Lamers visited him and his family every day in their home.
“I saw what happened to the whole family, how everyone went through a series of upheavals,” Lamers said. “I realized then that this is where the action is.”
In 1974 Lamers and some like-minded individuals established Hospice of Marin, in Marin County, Calif., one of the first hospice programs in the United States to serve the dying and their families in their homes. But Lamers said that his experience with his friend and his family only reflected in a more intimate way what he had been seeing for years in his private practice of psychiatry.
“I saw people coming into my practice with problems that related to the death of a family member many years after the fact,” he said. “All I could think was, Why aren’t we providing better support at the time it happens?”
The emotional trauma of terminal illness—the grief, fear, and depression and the reflection on the meaning of one’s past that an imminent death inspires—would seem to invite the skills of psychiatry. Yet care of the terminally ill appears to be as rarified a vocation in psychiatry as it is among the rest of medicine.
“It is very much a matter of doing what psychiatrists do anyway—helping patients make meaning of the life they have lived,” said child psychiatrist Paula Rauch, M.D., who works with parents who have terminal illness and their spouses. “But instead of the patient moving into the future, it’s those they love that must move forward and carry that person with them.”
In interviews with Psychiatric News, Lamers and other psychiatrists testified to the vital role they have played in a variety of settings not limited to hospice: in psychosocial support groups for patients with a specific illness, in hospital settings, and in traditional psychoanalytic psychotherapy.
Across these settings, an animating principle in end-of-life psychiatric care has been the notion that dying patients are helped—not harmed—by confronting the existential issues raised by an impending death. It is a principle that has been advanced by Stanford University psychiatrist David Spiegel, M.D., in his pioneering work with psychosocial support groups for women with breast cancer.
Psychiatrist Molyn Leszcz, M.D., said that the group psychosocial support model is intended to counter what he calls “the prison of positive thinking”—the idea that impending death should be greeted with denial and a smile.
“A common phenomenon we have seen is a pattern of tentative communication among family members,” he said. “People facing a mortal illness are confronted with existential challenges about death, meaning, and the uses of freedom and responsibility within a limited time frame. But mothers and wives felt tremendously isolated because they were trying to protect a spouse or children from talking about these painful things.”
Leszcz is an associate professor and head of group therapy in the department of psychiatry at the University of Toronto.
His experience with the groups validates the adage that death focuses not only the mind, but also the spirit.
“If you have a limited amount of energy and time, it’s an invitation to trivialize what is truly trivial and engage in what is most meaningful,” he said. “We encourage women to discern what it is that is truly central to their identity. It is quite compelling to hear a mother say that all she wants is the energy to pick up her kids after school.”
Integral to the success of psychosocial support, in addition to confronting existential issues, is the more practical wisdom family members can impart to each other about such day-to-day concerns as use of medication to control pain.
“One of the things that has emerged from the group is that women would be in pain, but would be reluctant to complain because they didn’t want to take morphine,” Leszcz said. “One reason is that people are bothered by the addictive quality of morphine. But for others, the idea of taking morphine meant you were one step closer to the grave.”
Leszcz said that group discussion provides a venue for participants to see that adequate pain management is not a surrender to death, but a strategy for mastering the demands of life.
Lamers agreed that control of pain is essential to psychiatric care of the dying, noting that wise use of pain medication is a distinct advance in recent years. At the same time, he lamented the overuse of psychotropic medications to treat depression and anxiety, saying that many symptoms are in fact related to inadequate pain management.
“Twenty-five or 30 years ago we used to give bucketsful of medications to people who were dying,” Lamers said. “Psychiatrists didn’t know about palliative care and were dealing with depression without sensing that the depression in a dying person is multifactorial. A lot of these psychological problems can be traced to poor management of severe pain.”
Death, for better and worse, is a family affair, and for the terminally ill—as well as their medical caretakers—the children of the dying present a wrenching dilemma.
At Massachusetts General Hospital Cancer Center in Boston, Paula Rauch, M.D., runs a “parent guidance center” for terminally ill patients with children. Three years old now, the goal of the Parenting at a Challenging Time (PACT) program is to help families and their children prepare for and cope with a parent’s death.
Rauch said that the program is one of the few of its kind in the country. “We would get referrals for children of adults who had recently died or were terminally ill,” she said. “It struck me that we ought to be addressing these needs in a more organized and preventive model.”
The interaction between parents having a terminal illness and children at different developmental stages is a challenge medical personnel and social work staff are not typically prepared to meet. How to talk to children about a parent’s impending death—and how to counsel parents to talk to their kids—are subjects too wrenching for many physicians to face, Rauch said.
“One problem is that they feel they don’t have much to offer in terms of expertise,” she said. “It all seems terribly sad, and they want to be protective of all parties.”
But Rauch added that the program is guided by the same principle animating group psychosocial support for adults: that the painful issues of death and dying are best not swept under the rug. And she said that challenging physicians’ perceptions about what will happen when they speak to dying patients about their children can be enlightening.
“When you ask people about their children, their faces light up,” she said.
The program has evolved 12 principles for discussing a parent’s condition, guided by the developmental stage of the child and the nature of the parent’s condition, she explained. Among those is the fact that children’s questions—about the efficacy of treatment, about whether the parent will recover, and others—don’t always have to be answered immediately.
“Parents are so worried that their children will ask them something they aren’t prepared to answer,” she said. “They have the feeling that they will have to give a complete answer immediately. But you can welcome a question warmly without answering it in the moment. The parent can say, ‘You ask such great questions. I really want to think about this so I can give you a good answer.’ ”
But questions should always be answered in time, and equally important is another principle: never lie. “Earlier in treatment, even if the prognosis is poor,” Rauch said, “parents can say, ‘I’m going to the best doctors I can, and I’m going to do the best I can to get rid of the cancer.’ ”
And later?
“At the point at which there is no chance of curing the cancer, many parents will say to their children, ‘The medicine doesn’t always make the cancer go away, but I’m going to try to live as many days as I can. The best thing you can do is to be a regular fifth grader.’ ”
Echoing other psychiatrists who work with the terminally ill, Rauch said that the dying are privy in a way the healthy are not to the finality that attends all life, and they can sometimes impart a courage that is valued by their caretakers and survivors.
In the aftermath of September 11, for instance, Rauch observed, many cancer patients—having an intimate perspective on the terror that strikes from within and a unique understanding of the phrase “terrorist cells”—could speak with potent feeling about the need to live resolutely in the face of fear and uncertainty.
For the families is left the task of carrying on without a loved one. “The dying are passing the baton in a way,” Rauch said, “but the process of helping them say the things they need to say is incredibly valuable and will be carried forward by all the people they care about.” ▪
