The Last Taboo
Dr. Avery Weisman and his group at Massachusetts General Hospital also contributed to our understanding of the concerns that trouble patients with cancer. Through Project Omega, Weisman studied the distress of patients and their "existential plight." He identified those who were most vulnerable, and defined those likely to be most in need of help. He too, acknowledged that finding meaning was critical, along with proper handling of distress, symptoms, and the maintenance of morale.
Project Death in America, established by the Soros Foundation, has had a profound influence on the culture around dying in America in the 1990s. Dr. Kathleen Foley, a physician at Memorial Sloan-Kettering who pioneered in the field of pain research, treatment, and palliative care, has directed this effort from the beginning with a tremendous impact. This concern for quality of life in the face of death has come at a time when the debate over rational suicide has focused attention on another aspect of end-of-life care: the right of the person to ask a physician for assistance with suicide. As contentious as the debate has been, it has led to public discussion of this important topic. Many feel that physician-assisted suicide is a fast-answer cop-out to a complex problem. That it glosses over the need for public and medical education about better end-of-life care. This end of life care should be as aggressive at treating pain and suffering as the treatment that was aimed at cure.
One aspect of suffering is depression, which is in itself a high predictor of requests for physician-assisted suicide. Dr. Harvey Chochinov, a psychiatrist in Winnipeg, Canada, found that there are great day-to-day fluctuations in terminally ill patients' will to live and wishes for hastened death. These variations have to do with such factors as the severity of physical or psychological symptoms at a particular time, and events in the family. The instability of the wish to hasten death suggests that patients who ask their physicians to help them die may feel differently later, if they have the chance. Some people assume that frail, elderly individuals would be the most positive about physician-assisted suicide. In a study by Dr. Harold Koenig and colleagues at Duke University, however, only 39 percent of elderly with chronic illness condoned physician-assisted suicide for terminally ill patients. Ironically, among their interviewed relatives, 59 percent favored the measure. It is interesting also, that spouses and children were only marginally able to predict how their ill, elderly relatives would feel about the subject. This information suggests that living wills are important and that it is risky to make too many assumptions about how people who are most vulnerable feel about the legal initiatives.
The point to remember is that depression among these patients can often be relieved. We need to give more attention to improving medical care, as opposed to putting the emphasis on changing the laws. The diversion provided by Dr. Jack Kevorkian and his "suicide machine" has had the unfortunate effect of blurring the real issues. Dr. Kevorkian has been hailed as a hero and protector of the dying. In fact, few know that he is a pathologist who never took care of a live patient in his medical career. He barely knew the patients whose suicides he assisted; he did not assess their pain and suffering (including treatable depression) prior to arriving to his decisions to help them carry out their suicidal wishes. The U.S. Supreme Court's decision to allow state-by-state action on this issue has been wise. The Oregon experience so far has been thoughtful. Other states have not jumped to get on the bandwagon; it is likely wise to engage in longer deliberations about this issue.
A recent study of people receiving dialysis for kidney failure or AIDS, done by Dr. Peter Singer in Toronto, gets closer to what patients consider most important in their end-of-life care. While no cancer patients were part of this study, the findings show what very sick people want during their care at the end of their life. First, patients wanted to be sure their pain and other distressing symptoms were going to be controlled. Constant, unremitting pain is intolerable, and it can be controlled today with only rare exceptions. Unfortunately, the public needs more education to reduce these fears. Continued education of doctors and medical students is also needed to ensure they know how to use all the new analgesic agents and procedures.
Other symptoms can be distressing as pain: shortness of breath, anxiety, inability to eat or sleep normally, diarrhea, and nausea and vomiting are common ones. With good palliative care, these symptoms can be controlled. Many research trials today are testing ways to control each of these symptoms. Too often in the past, such symptoms might have been dismissed as "going with the territory." Not so today in palliative care, which is improving at a fast rate. In fact, the first Chair of Palliative Medicine in the United States was established in 1998 at the Albert Einstein College of Medicine with the appointment of Dr. Russell Portenoy, signifying a new level of recognition in medicine of the importance of this aspect of care. The control of physical symptoms and psychological distress must be part of the focus of care. These issues are important not only for the patient, but also for the family members who look on and observe. Family members often have indelible memories of loved ones who suffered without relief. These memories become part of their grieving and complicate the burden of grief.
Another finding of Singer's study was that people feared being left "lingering," kept alive on machines with no hope of getting better. They did not want to be left as a "vegetable" in a prolonged dying process. They also wanted to ensure they would be a part of the decisions made about their care, or else that their chosen proxy would make the decisions. This concern reflected a need for a measure of control over their situation, a respect for their wishes. They wanted to avoid being a burden on their families to the extent possible, for example by making a living will dictating their wishes for care so that relatives would not have the burden of making decisions without knowing what they wanted. The organization Choice in Dying has information about living wills, including the laws of each state (www.choices.org). Having the document helps, but a frank talk with whomever you choose as your health proxy is equally essential. The patients in the study wanted to strengthen family relations by talking openly about their situation, even though it was uncomfortable, and often had to be done when the opportunity arose. Family members are often overwhelmed and upset by such talk and avoid it, sometimes out of fear saying the wrong thing and sometimes out of the wish to bolt. The areas of concern to patients studied by Singer and his colleagues about end-of-life care have at their core the need to respect each individual's wishes to be free of intolerable symptoms.
Following is a discussion of the major concerns patients with terminal illness want addressed in their care at the end of life.
Control of pain and suffering
Intolerable pain leads to hopelessness and giving up. An important dictum for hospital staffs is that they cannot evaluate a person's anxiety or depressed mood until his or her pain is controlled. When that is done, the mood often changes for the better and anxiety goes down.
Anxiety can be disabling, and it is common in people who have shortness of breath or uncontrolled pain. Panic attacks, anxiety with restlessness, inability to go to sleep or stay asleep, jitteriness, and racing heart are all treatable and should not be considered things that must be tolerated without relief. Medications can control anxiety at this stage of illness without causing drowsiness. Being awake to interact with the family is important; many patients state, "I don't want to be zonked and not be able to talk with my visitors." Many people also like to practice relaxation techniques or meditation, which may bring them a sense of peace and tranquility.
The stigma of psychiatric care arises again in the area of palliative care. Patients and family may be concerned. "Why are you asking a psychiatrist to help?" They feel it is somehow disrespectful of the person who is ill. ("Of course he's depressed; what do you expect?" or "You're just going to knock him out.") They don't understand that a psychiatrist can play an important role in the treatment of the forms of distress with which oncologist and generalists are sometimes less familiar. This role involves, in part, providing support for both patients and their family, but also recommending medications as needed. Medications can reduce extreme anxiety and panic and leave patients more comfortable, calmer, and better able to cope. Similarly, the tremendous fatigue and drowsiness that pain medicines cause can be decreased by stimulants that can help patients feel more alert and able to undertake meaningful tasks during the day. Finding the right bedtime medication to ensure sleep is important also. These symptoms, as well as depression and confusion, are treatable, and with their control, patients can be more like themselves, to the great relief of family members.
Depression has been discussed as well as its troublesome counterpart, hopelessness. Clearly hope should never be given up, and one should never feel there is a time when nothing more can be done. It is important to realize that comfort is an integral part of treatment, and it should be approached with full vigor. The debate concerning physician-assisted suicide hinges in part on whether physicians are willing to be able to recognize and treat depression. The concept that is "normal" at this stage to be depressed and that there is no treatment for it is wrong. Yes, it is normal to be sad, but true depression is something else. It is the sense of isolation with no ability to enjoy even a simple thing, an extreme fatigue, a mood that stays "down" no matter what, the inability to eat or sleep, or hopelessness with a wish to die or to receive help with suicide. These symptoms of depression need careful evaluation and treatment.
Help in finding meaning
The meaning that patients derive in their ordinary healthy days will likely affect the way that they choose to spend their time during a serious illness. Often it is helpful for patients to be encouraged to focus on completing a piece of work that is important to them.Many physicians who are accustomed to a vigorous daily schedule find solace in directing their energies toward a paper or research study that must be completed. In the same way, work becomes a vehicle for feeling productive despite illness, a way to remain part of a community, and a way to leave a legacy by contributing to a familiar area.
Another effective strategy that helps many people, is to ask them to review the important aspects of their lives. Often people comment, "But I've done nothing important. I made no contribution to the world." However, when I look back with them, they share with me recollections of special relationships, of their impact on a friend or child, or some special achievement that reflected altruism. Morrie Schwartz said it well with, "People die, but not relationships. You live on in the hearts of others." By reframing their lives, patients gain a new perspective that leads them to see the difference they have made in the lives of others. The life narrative approach provides a way to view your life from another vantage point, one that sees the broader picture, the meaning of a life lived.
Psychotherapy can be yet another vehicle in the search for meaning at this stage of life. Now it is directed toward finding out, first, a patients concerns such as about death, the dying process, the anticipated separation from loved ones, and the impact on family members. Part of the existential distress is recognition of leaving all that life means, and all those one loves. This causes intense mourning of the loss that is coming. Acknowledging and expressing these feelings is comforting both for the patient and for the family. Separating the grief surrounding these losses from depression is important. Depression represents an added burden that can complicate the ability to cope with grief and the emotions that often surface; depression adds feelings of guilt, worthlessness, suicidal despair, and the inability to enjoy any activity. Supportive psychotherapy can give patients emotional assistance with these problems, is responsive to their changing needs, and can help them to have greater awareness of their strengths throughout life. Susan Block, of Boston, noted in a report to the American College of Physicians:
Psychological distress is a major cause of suffering. It impairs capacity for pleriendsasure, meaning and connection in the present, erodes quality of life and amplifies pain and other symptoms, it reduces the ability to do the emotional work of separating and saying good bye, and causes anguish and worry in family and friends.
Yet distress frequently still remains under-recognized and under-treated.
Father Tom MCDonnel uses an interesting analogy, to give a tolerable meaning to pain and suffering. It combines the psychological and spiritual in a unique way.
Living near the beach, I've gotten into the habit of collecting ocean washed stones as I walk my dog. I've often used a stone with children to encourage them. I call them my "don't be afraid stones." I ask the children to listen to the story of the stone: "Let the stone tell you about the earthquakes and the thunderstorms and the moving earth plates and the fierce storms that brought it to where it is now. It used to be much larger, it used to be a different shape altogether. Along the way, it had many challenges and scary times. Look how they've smoothed it down to where it fits in the palm of your hand. Feel how far its come, and it's not finished yet. In fact, it was on its way to the beach when I picked it up and asked it to help you get through this rough time. It'll help you."
Father Tom is one of those pastoral counselors who are powerful with patients because they combine the spiritual with the earthy mundane, and often with good humor, to help people cope. He is a highly skilled pastoral counselor for patients with severe illness.
The Reverend George Handzo, director of the Chaplaincy Service has compiled a list of the most common problems people bring to him and his chaplains: isolation from the religious community, grief, guilt, hopelessness, concerns about death and the afterlife, conflicted or challenged belief systems, loss of faith, concerns with meaning and purpose of life, concerns about their relationship with deity, conflict between religious beliefs and recommended treatment, and ritual needs.
The Gallup poll mentioned earlier found that people, while healthy, say they would like clergy to be available if they became seriously ill to provide spiritual support and to deal with concerns about death, feelings of guilt, distance from their faith community, and concerns that illness is punishment.
Concern for the closeness of others when one is ill which comes up over and over; it only increases with the advancing level of illness. A Gallup poll showed that this is especially true for younger people. They felt it important, in the face of severe illness, to have someone with whom they could share their fears and concerns and who could hold their hand. The threat to these ties is part of the existential crisis of illness. How does one talk about the unspeakable?
Phillip was a successful lawyer whose life with his wife and young children was suddenly shattered by his diagnosis of colon cancer that had spread to several sites, including the liver. Unfortunately, his chemotherapy treatment did not shrink the tumors. He and his wife sought advice on when and how much he should tell his six-year-old son and four-year-old daughter. Children need to feel "in the loop." If not included, they sense something is wrong, but not knowing what, many assumed they caused the problem or that things are much worse than they actually are. Phillip's concerns were for his wife and children to a far greater extent than for himself. He had lost his own father in childhood and knew the pain it had caused him. He was particularly concerned for his six-year-old son, Charles, who could better understand what was happening. He wanted a way to tell his son he would always be with him in spirit. They had seen the movie The Lion King together, and it provided him with a way. As he is dying, Mufasa, Simba's father, talks with Simba, pointing to the night sky, and says in effect, "When you look up at night and see those twinkling stars, you know I am there watching over you." Phillip used this story to give his son the message of his own love and continuing presence.
Other movies and books are useful in preparing children, such as The Land Before Time, a film in which the mother of a baby dinosaur dies and he must find his way, but she returns in his thoughts to guide him when he is in trouble.
In summary, with both children and adults, the last taboo, that unspeakable topic, is part of the tapestry of life. We do better if we can openly discuss it and put it into a perspective that gives some meaning to life and death. There are many ways of finding meaning: psychological, spiritual, and philosophical. Any and all of these ways should be respected and encouraged. People at the end of life have a right to broad approach that gives them full care for all their needs: attending to their distressing physical and psychological problems, helping them to strengthen their ties to others, and ensuring that their spiritual needs are met. Such an approach to care must incorporate a team of people who share the philosophy of hospice care that addresses all these dimensions. We are coming closer to meeting these needs, but much remains to be done in training doctors, medical students, and nurses. Patients and their families can contribute by pointing out their need for this type of care and by influencing public policy. Hopefully, one day soon, exploring the meaning of life and death will no longer be taboo.