(5/21/00)-Today, it is generally conceded that active involvement of patients in the treatment process leads to healthier outcomes. It would seem important to carry this out in all areas of medical treatment including the elderly and those suffering from intractable pain.
Concomitantly, new medical technology keeps ill people alive, possibly longer than some individuals may want. This has altered the face of death. Here the focus is on the body and technical solutions to the problem of death. Yet these technological and pharmaceutical treatments may make the patient feel like a passive machine, involve a reaction to treatment rather than an interaction in the healing process. It has the overall effect of moving the individual away from involvement in the interactive process of health. The responsibility rests with the "machine" or medications, which can do effective work but may not represent the individual's desire.
In 1990, the United States Congress took a step to help people in these situations. A Patient Self Determination Act was passed which makes it mandatory for every hospital and nursing home to develop a protocol for advising patients of their legal rights and options during a period of hospitalization especially when they are incapacitated. Patients have the right to accept or refuse treatment and to make advanced directives. (See our article on Living Wills and Health Proxies). This has lead to issues around suicide and the right to die. Dr. Jack Kevorkian has become a one-person crusade in the area of physician-assisted suicide. One nation, The Netherlands, has made suicide and euthanasia legal under certain narrow circumstances. Usually, these steps involve individuals in the terminal stage of life who are in great pain and most likely have little time left to live. (See article on Hospice and Palliative Care)
In the June 1997 Supreme Court decision on assisted suicide, Justices O’Conner and Souter supported the use of medication to alleviate the pain and suffering of terminally ill patients, even to the point of causing unconsciousness or hastening death. It appeared to indicate that the Supreme Court would accept some form of terminal sedation as legal. The sedation would relieve extremes of physical distress, with the medication rendering the person unconscious to alleviate suffering and not intentionally to end life. This type of treatment is different from use of high-dose opiod treatment to relieve severe pain, but which usually does not induce sedation. Terminal sedation involves a conscious decision to render the individual unconscious to relieve the unbearable physical distress. The person usually dies within a few days.
Interestingly enough, opponents of physician-assisted suicide cite terminal sedation as a preferable alternative because death is not directly or intentionally caused by the physician. It is a step used in the final two to three days of a persons life and must involve all persons concerned with the care of the individual including patient, family, physician and treating team. Suffering must be severe, with uncontrolled distress such as intractable pain, dyspnea and delirium. Informed consent is mandatory with patient having the capacity to understand the treatment and the available alternatives. The presence or absence of depression must be ascertained and treated, if present, before sedation is undertaken. It is only used in the most difficult cases with the understanding of the clinical and ethical issues by the patient, family, physician and clinical team.
All of us, including the elderly, need to be involved in a sense of personal control for our own physical and psychological well being. Perceived choice is the primary example of personal control. Professionals may view death as evidence of their powerlessness when they fail to stop its expression. It is something they need to learn to deal with in their chosen career. Let them also ask the question of whether the vast outlays of resources for life-extending technologies are driven by patient demand or by other forces.
Improvement in the care for the dying is being explored in a number of ongoing projects including The Project on Death in America, Supportive Care of the Dying, and Missoulu Demonstration Project. The American Society of Clinical Oncology Task Force on Cancer Care at the End of Life has outlined several principles upon which to base a humane system of care. Responsiveness to patient's wishes is one of the major principles. The American Medical Association Institute for Ethics has identified eight elements of quality end of life care. Among these are the opportunity to discuss and plan end-of-life care, assurance that preference for withholding or withdrawing life-sustaining interventions will be honored and attention to the personal goals of the individual.
For those at the end of their lives, the message appears clear. Autonomy instead of paternalism is the final expression of personal power and control. It is an important part of a "good death", the goal of all individuals. It is not death that is feared, but the process of death. Society must continue to be involved in insuring this final quality of life for their citizens. Palliative care is where it starts.
FOR AN INFORMATIVE AND PERSONAL ARTICLE ON PRACTICAL SUGGESTIONS WHEN SELECTING A NURSING HOME SEE OUR ARTICLE "How to Select a Nursing Home"
By Harold Rubin, MS, ABD, CRC, Guest Lecturer
posted May 21, 2000
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