How to die well

A recent conference dealt with something few people like to think about - the end of life.

By
June 30, 2007 22:27
How to die well

death 88. (photo credit: )

Today, dear readers, we will discuss our deaths. No, please don't turn to another page just because death - especially one's own - is such an unpleasant thing to think about! Close your eyes. Put your feet on floor and your body in a comfortable position. Think of yourself in a garden surrounded by fresh air and a light breeze. You feel rested. You hear the sound of birds. You feel peace. Pay attention to your breathing - inhale and exhale slowly. While you rest, you see on the horizon a person coming near. He is polite and social and sits next to you. He asks several questions: If you could choose how you would die, would you prefer to die suddenly or after a long illness? What would the cause be? Would you prefer a painful death or one without pain? At what age? Where would you want to be when it happened? Would you want to be alone or with others? Would you want something special to do or be done before? How would you want to be remembered? What reaction do you expect from others after you die? How would you want your property disposed of, and would you want your organs donated? Now take a piece of paper and draw a horizontal line - your lifeline from birth to death. Somewhere between one end and the other, make an X to show where you are now. For some it will be in the middle or near the start, while others will put the X closer to the end. Think about what you have achieved during your life so far and write down six things that mean the most to you. Then list them according to importance. List six things you still want to achieve. But your life may be shorter than you expect: Move the end point closer to the middle and decide which of the six you still want to achieve in the time allotted. I DID NOT make these up. They are two of the exercises designed by therapists at Tishkofet ("Perspective" in Hebrew), a non-profit organization based in Jerusalem (POB. 62141 Jerusalem; tel (02) 571-4122 or [email protected]) aimed at providing emotional help to terminal patients and their families. The organization was founded and is headed by Prof. Ben Corn, the US-born chief of radiology at Tel Aviv Sourasky Medical Center, and his wife Dvora, a family therapist. They are also experts in thanatology, which refers to the study of death and dying, especially the investigation of ways to lessen the suffering and address the needs of the terminally ill and their survivors. The Corns recently held a symposium on "Coping with the End of Life and Ourselves" held at Jerusalem's Mishkenot Sha'ananim with support from the Jerusalem Foundation, the UJA Federation of New York and the Geriatric Institute of Jerusalem's Shaare Zedek Medical Center. The all-day symposium was attended by dozens of physicians along with some nurses, hospice staffers, psychologists and social workers - many of whom work with the dying and those who are about to lose or have just lost a loved one. In addition to workshops and lectures, they also offer family retreats in vacation spots with lectures accompanied by music therapy, exercise, yoga, cultural events and spa treatment. In a workshop, doctors and others who deal with death on an almost daily basis were asked to recall the first time they encountered someone dying. In most cases, it was a grandparent who passed away, but in other cases it was a parent who died of natural causes, or even a friend who met a violent end in an explosion. "Some deaths are traumatic," said Dvora Corn, "but most are not. Some people were close, and others were not. We think of ourselves and our family. What will be a good death? You can't really plan for it, because you don't know when it will be, but you can take steps so that it won't be so frightening and your loved ones will be prepared." Going around the room, the Corns found that most of the participants wanted to die suddenly, so they would not suffer. But a minority said they preferred to die after a long - but not painful - illness, as such a situation prepares you and your family and friends. "It gives you time," said one female physician, "to say goodbye to people." "I want to die at 95, with all my children and grandchildren around me, from old age but not from disease," confessed another participant. "I'm ready to die at any age, but not after my husband," said another woman. "I don't want to go on after him. But I also prefer to live as long as I can function without being a burden on anybody else." Yet another woman who works in a hospital internal medicine department said she didn't want to survive into her 90s. "From my experience with elderly patients, I know most don't enjoy their 10th decade." BUT DVORA CORN said one's "preferred age" for dying often depends on the image you have of loved ones, either those who lived well into old age or those who suffered and died young. Prof. Corn said his own father died of cancer at the age of 52, and that when he and his brother reach that age, they will "celebrate" their survival. A male doctor said he wouldn't want his children to be with him when he died or to find him dead. "I am ready to die when my youngest i old enough to manage on his own," he said. Most participants said they would prefer to die at home rather than in a hospital, hospice or old-age home. But others objected, saying that a death at home can be very traumatic for loved ones, who would remember the event forever. One woman who has hostel experience said that "if you prepare the family, they can benefit. I have seen deaths in the home. It is hard, but professionals can help make it easier." "If the person suffers," agreed a male doctor, "it's a nightmare for the family." "It is now 'in fashion' to want to die at home, just like some women want to give birth at home. It is an anti-institutional view. But for some families, a death at home is very hard, especially if the disease has gone on for a long time." A Jewish physician from Florida who attended the workshop said that when he was first involved in hospice care 25 years ago, "we thought everybody wanted to die at home. But we found that many patients and their families don't want this. In Florida, there are many elderly Jewish couples, and when one dies, the spouse wants to destroy the bed and move out. In a hospice, with all the available services, it would be easier for the surviving spouse to cope. We have to find the right place for each patient and family." Dvora Corn said that from her experience, some people prefer to die alone, while others wanted to be surrounded by family members and even pets. While some didn't care how their personal goods were distributed, one participant recalled a grandmother who, a few months before she died, went through her jewelry and chose a piece specifically for each child and grandchild. "I would like to solve problems for people or make peace among people as something to leave behind," suggested one young physician. Most wanted to buried in a cemetery according to Jewish tradition, but one woman said she preferred to be cremated, with her ashes buried in her garden. Only three of the 19 workshop participants said they had composed a will, even though quite a few were middle aged. Only a handful had discussed their deaths with their children. "MANY PEOPLE ask why we got into this profession," concluded Prof. Corn. "We find it helps and encourages us, and makes it possible to focus on the time we have left and value it more. We get a reminder in our work every day. And this awareness helps our patients as well." "If you just listen to dying patients and their life stories, it helps," added his wife when a young doctor said he didn't know how to give hope." Considering one's own death is no longer a lugubrious and theoretical activity; it is becoming almost mandatory, now that the law governing the end of life has taken effect. A Health Ministry center has begun to accept living wills from people who want to stipulate how their lives should end if they become terminally ill, and has already collected several dozen of these in a vault. These will be used to tell hospitals what the patient wishes. The forms can be downloaded (so far only in Hebrew, but soon they will be in other languages) from the ministry Web site at www.health.gov.il (under the listing for Mercaz Le'hanhayot Refuiyot Makdimot) or ordered by calling (02) 670-6825. An e-mail message can be sent to [email protected] To be included in the databank without charge, one must send the form by registered mail with a copy of one's identity card. Dr. Mordechai Halperin, the ministry's adviser on medical ethics who is in charge of the center, said implementation of the law passed in December 2005 was delayed for a year due to bureaucratic necessities. It was aimed at allowing the terminally ill to die in dignity without being kept alive by artificial means. Seven years in the making, the law is regarded as one of the most important ever passed by the Knesset. If requested in a living will (renewable every five years) by oneself or by a person chosen to decide on his behalf, a terminally ill patient who is over 17 may ask that his life not be extended by artificial means. There were previous attempts to legislate the end of life, including one shocking one. In the 1970s, said Halperin, one MK presented a bill that would allow medical care to be withheld "if the patient is over 70, is suffering, and if those who visit him are suffering as a result." Fortunately, this bill did not pas, Halperin declared. A 1977 law forbids the active killing of patients but permits allowing a patient to die by passive avoidance of treatment in certain circumstances. Then, in 1996, the Patient's Rights Law stated that medical treatment should not be given unless the patient gave informed consent. Yet this law sets down exceptions for medical emergencies, in which doctors can give urgent treatment without informed consent if the patient is unable to give it, or if it is invasive, such as surgery, three doctors must give their approval. Halperin, a gynecologist and Orthodox rabbi who is also one of the country's leading experts in Jewish medical ethics, said all patients, if they are mentally and physically able, sign informed consent forms, "but the vast majority don't know what's in it. This part of the 1996 law is not kept, but most patients are not really interested in being told what complications can result from treatment." In cases in which the patient is in serious danger and needs urgent care but refuses to be treated (such as having a leg amputated from gangrene), a doctor can legally give treatment if the hospital ethics committee was persuaded (after hearing the patient) that treatment will greatly improve his condition and the committee was certain he would have agreed after the fact (retroactive informed consent). This part of the law, which Halperin initiated, is unique in the world and based on Jewish law. Neither of the previous laws conflicts with the newest law, which provides for halting the functioning of a respirator with a modified "Shabbat clock." One model for a portable delayed-response timer that can be attached to a patient's respirator has already been built, and the actual device should be available around the country by the end of this year. The delayed-response timer will be the main solution to the problem of how to let those who have fewer than six months to live control how they die. The device will soon be tested in two hospitals. No longer do families have to turn to the courts for permission to halt artificial measures. "If you want to understand life," said Prof. Arnold Rosin, head of Shaare Zedek's geriatric unit, "you have to understand death as well. You need perspective on death as a part of life."


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