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Dealing With Death If Cancer Becomes Terminal
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA
Death is a part of life. We all must die sometime -- we don't know when. Yet we persist in thinking of death as something that happens to other people. We do not accept our mortality until a crisis forces us to contemplate non being. Even then, we may fight, bargain and connive to gain more time, but life is elusive as well as precious. It may be snuffed out at a moment's notice or drain away slowly with disease or old age. And although physicians fight to preserve life at almost any cost in time, money or effort, we also know that a day will come when the time is right to let a person die.
In partnership with the physician, cancer patients face many difficult issues. Throughout treatment they share in medical decisions and if the cancer becomes progressively worse, they will at some point discuss with their physician matters concerning their dying. For example, people often ask that no extraordinary measures be taken to keep them alive when there is no longer any hope of being restored to a good quality of life. Other decisions involve a choice of where to die -- home, hospital, nursing home, or hospice. Funeral arrangements are also often discussed between patient and physician.
We are all concerned with maintaining dignity in life as well as in dying, and we share certain standards as to what constitutes an acceptable level of dignity. The cancer patient may gradually feel that level recede as he or she experiences diminishing control over personal destiny. A loss of privacy and of the ability to influence one's present or future may become more of a concern than dying. Sometimes people begin to question whether life is worth living under the circumstances, and whether euthanasia might be the best solution. Implementing such a request is neither ethical nor legal, but under certain official guidelines of medical practice, maximum comfort with minimum suffering can be promised. A physician can also promise not to interfere with a natural death by keeping the patient alive with special life-sustaining equipment. A patient has a right to die and to direct the physician to see that this wish is honored. See Choosing Life: Living Your Life While Planning for Death
As described in Hospice Care several forms of hospice units have emerged, helping to ease some of the problems associated with both home and hospital care. In some communities, a hospice unit is a segregated ward in the hospital with an associated staff of physicians, bedside nurses, home-coordinating nurses and social workers managing inpatient care and supporting at-home care by interacting with other community resources. Most units in the United States have developed as out-of-hospital home care agencies, coordinating inpatient services through a loose affiliation with neighboring hospitals.
In some settings, where a separate hospice unit has not been created, a group of hospital-based personnel that includes a physician, a nurse, a social worker and a chaplain. is available for consultation and support to patients throughout the institution.
The hospice movement fills a void in the medical and psychological care of the terminally ill. But the hospice team should not replace the concerned physician. Patients and families need continuity of care, and physicians should not relinquish their involvement when a patient is admitted to a hospice service. They should remain as physician-of-record, working with the terminal care staff.
A person can sign a directive to the physician and choose the the place where he or she will die. The only thing one cannot dictate is when one will die.
Most people know when they are dying and are sensitive to the suffering of those around them. Yet sometimes when they express a desire for peace, they are made to feel guilty by relatives who prefer to keep them alive under any conditions. To prevent such conflicts, many patients agree in advance with their physician to sign a document, called a living will, that states their request not to be kept alive by artificial means or heroic measures when there is no reasonable expectation of recovery. Living wills can also stipulate other conditions which the patient wishes either to be freed from life support or to remain on life support.
For some patients, there is a preterminal phase before descending into a coma. At this time, a patient is still alert enough to take comfort in talking with his or her family or with the medical staff. During this phase, anything or anyone especially dear to the patient should be made available. He or she may want to spend time with a particular relative, friend, child or pet.
But we must remember that physicians aren't capable of predicting when a person is going to die. We have only clinical judgment as to the time remaining for any patient. Moreover, no health care professional can prejudge the value of extra days or hours. Some time ago a patient of mine [Dr Rosenbaum's] was dying, with marked jaundice, of a massive malignancy that was obstructing his liver. Not wanting him to suffer any longer, I left a spoken order with the interns and the resident that when he died, no efforts at resuscitation should be made. About half an hour later, the patient had a cardiac arrest. Neither the resident or the interns were in the room, and the nursing staff had changed for the morning shift; the nurse naturally sent for the cardiac resuscitative unit, and the patient revived. He lived another 48 hours, and during that time several relatives arrived from the Midwest and were able to visit with him. In addition, a brother from whom he had been estranged for 20 years, flew to San Francisco, and they were reunited. He also had warm, emotionally satisfying talks with his wife and children about their life together.
Such communication is invaluable. It is natural for a dying person to experience a heightened sensitivity to the meaning of life and to want to convey special messages to those close to him or her. But these thoughts are not always expressed, either because of awkwardness at expressing deep feelings or because of a reluctance to talk about death. So survivors are often left without a final message.
Saying goodbye before death can be a comfort to everyone concerned -- family, friends, and patient. We have often participated in such a farewell to life by encouraging patients and key family members make a Life Tape while the patient is still alert. The recording may include a family history or anecdotes, or it may lead to a philosophical conversation on life and death. A physician or nurse can often be instrumental in helping people to break their silence by initiating similar conversations.
People who find it difficult to speak of their feelings sometimes write a letter expressing their thoughts and love. Such a letter often contains hopes for the future happiness of their loved ones, in effect giving them permission to seek joy and fulfillment in the next phase of their lives.
For example we received a copy of a letter sent by a young woman to her husband several months before she died. She wrote of their life together, her happiness with him and her sadness that it would end soon. She also told him that he would need to return to active living and that he should marry again when he met the right person.
It doesn't matter how eloquently or awkwardly such thoughts are expressed. This conscious, deliberate communication can relieve the stress of silence between two people and bring them closer together. Remorse and guilt may be assuaged in both people. The person who is dying may gain peace of mind, while the survivor experiences a bond that can be a solace during mourning.
Death is never easy to accept, no matter what the cause. Family members need special attention throughout the ordeal, but especially in the final days. Help may come from within the family or from friends; but physicians, nurses, clergy, social workers and hospital volunteers are also available and ready to listen. We always hope that families will find solace in the knowledge that their loved one received good medical care and sensitive emotional support, that he or she lived as long and as well as possible under adverse conditions, and that all possible comfort was provided to ease the process of dying.
Additional material is available at The Legacy Project Capturing the Memories of the Past and Planning for the Future
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