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A philosophy of care: Notes of a deathwatcher
212
Journal of Pain and Symptom Management
Vol. 3 No. 4 Fall 1988
Columns
Column
A Philosophy of Care: Notes of a Deathwatcher Frank J. Brescia
The experience of persons suffering from hopeless illness raises powerful, emotional, and, at times, conflicting issues and concerns for the caregivers, whose responses to patients fundamentally affect the whole final experience of dying for each individual. The pluralism of our society that dwells so little on death creates enormous tensions and opposing suggestions as to the meaning, not of death, but of life. All patients known to be dying are “timebound” (terminal) and can be assumed to be hopelessly ill. However, the physician lacks the gift of prophecy. This terminal phase may be quite immediate or may be long-term; it is One may also define a usually indeterminate. group of patients who are hopelessly ill, but not terminal. They are not “time-bound’ by their illness, yet the sickness is obviously incurable. The point in time that signals the initiation of the dying process has always been difficult to determine. Yet the acceptance of this process of dying is crucial in eventually making correct, clear, and hopefully compassionate decisions. The problem for physicians is in defining the terminal status and in deciding what groups of patients are no longer treatable and for what reason. A large part of this dilemma derives from the judgment that treatment is no longer part of the necessary care for a particular patient. When do we choose not to give a drug, blood transfusion, or antibiotic to this dying patient? For the clinician, false “hopes” can be immoral. Initially, therapeutic trials make sense for difficult situations in which there is clinical uncertainty. To believe that treatment once begun Frank J. Hospital,
Brescia, MD, is Medical Bronx, New York.
Director,
0 U.S. Cancer Pain Relief Committee, 1988 Published by Elsevier, New York, New York
Calvary
cannot be stopped is wrong, however, because it omits reasonable trials to persons who may benefit from therapy. Later, after clinical uncertainty has passed, therapeutic trials may still be appropriate, both for clinical and compassionate reasons. Some families and patients have strong feelings of denial, guilt, and ambivalence, and they want continued treatment in the face of hopeless illness. Withdrawal of treatment may also be appropriate in this setting, however. Some patients and families are firmly convinced that the uncertainty of a therapeutic trial is not warranted; death seems a reasonable, accepted outcome, and the earlier death is welcome. Of all the therapeutic issues raised in this population, the decision to withhold feeding and hydration is especially difficult. Are not feeding and hydration morally necessary because these measures are “ordinary” and therefore obligatory? The terms ordinary and extraordinaly have been used since 1595 in discussions concerning the preservation of life. They are particularly relevant to the issues of feeding and hydration in hopeless illness. Ordinary care can be described as simple, natural, ususal, noninvasive, proportionate, inexpensive, and morally imperative. Extraordinary care, on the other hand, is complex, artificial, unusual, invasive, disproportionate, costly, and morally permissive. Usually, ordinary care is considered obligatory, while extraordinary care is optional. It is, however, confusing to make decisions on a case-by-case basis without critically examining their impact on the life of the patient. It appears that we are now often assessing the benefits and burdens of the means and not the person who must live the life prolonged by them. What is extraordinary today may become 08853924/88/$3.50
Vol. 3 No. 4 Fall 1988
quite ordinary tomorrow, but more important, what is ordinary to one individual today may be extraordinary to another. Whether a therapy is extraordinary or not is more an expression of the anticipated outcome than the reason for its use. Although the competent patient or surrogate can legally refuse both extraordinary and ordinary care, the entire language of ordinaryextraordinary no longer makes any sense in the dying patient. Patients known to be dying have no good alternatives, and the distinctions drawn between ordinary and extraordinary care may have no validity. For these patients, there may be a paradoxical obligation to withhold therapy, and this includes the medical interventions of nutrition and hydration. There should be no distinction, either legal or moral, between withholding and withdrawing futile medical interventions. Yet, it has always seemed easier for physicians not to start something than to discontinue it because of the perceived imperative to maintain therapy. This appears to be more of a psychologic dilemma than a moral one. What is indicated should be tried and what is a failure should be removed. This clearly misunderstood distinction has resulted in great suffering as clinicians have failed to give an adequate treatment trial, or have persisted in some form of futile intervention for long, exhausting, and costly periods of time. As decisionmakers, we try to obey laws and follow our moral principles, but we are not free from deep-seated feelings about the action chosen. These emotional and symbolic impressions can damage the logic in every case we see, even though we consider ourselves to be experienced, competent, skilled, and concerned people involved in the necessary care of the very sick. Consider, as an example, the following case: A 75-year-old childless woman is admitted to the hospital with progressive confusion. The patient is diagnosed as having a malignant brain tumor. She is treated with cortisone to reduce the brain swelling. There is dramatic reversal of the confusion, but she vehemently rejects any further diagnostic and treatment intervention. The situation worsens and she requires transfer to terminal care setting. At this time, the patient is unaware of her surroundings and is paralyzed. The day prior to the transfer, a nasogastric tube is inserted, at the request of the
Columns
213
patient’s sister. The patient’s clinical picture remains stable with little change, except for easily managed infections and seizures. Although the feeding tube falls out occasionally, it causes no serious problems and the nutritional status remains controlled. The patient’s sister now asks for the removal of the feeding tube since she sees no improvement. The staff (mostly nurses) is concerned that the request is initiated because of financial concerns, as there are rumors that the health insurance will terminate. This woman, initially incompetent, with no her final course real hope of cure, decided when she became competent, clear, and fully informed about the nature of her illness and outcome. The cancer would carry, on average, a survival of less than 40 weeks. Her decision was not to prolong the inevitable period and process of dying. The illness was incurable, and the clinician could not honestly argue with her rational and reasonable choice. However, the sister forced the health care team to evaluate their principles and their manner of care. When no longer cognizant, the patient could not establish her priorities nor explain what this illness and these circumstances meant to her. The tension and uneasiness that was raised by the sister’s request was bothersome to staff and physicians because it forced them to explore what they do daily and routinely without much questioning or challenge. If, indeed, this woman’s prognosis was not “time-bound” nor imminent, would it be more difficult to ponder the removal of the tube? Did the patient’s previous action set the standard for care after she could no longer communicate? Would the challenge have been greater to staff if the patient, when she was competent, had demanded aggressive treatment for her disease? The physician conceded that if he had to decide whether to insert the tube after the patient became unaware, he would not do it. However, it was quite obvious that he was uncertain about removing the tube without some general consensus from his peers that this was a correct action to follow. Is this a moral, legal, or psychologic dilemma for the doctor? If there were no sister, would the question have surfaced at all? If the rumor of insurance expiration did not arise, would there have been a challenge, even with the sister present? The staff, certainly, recognized similar situations with other patients on
214
the ward, but when the issue of money was raised, hadn’t the staff placed the sister and family on “trial,” doubting their pure comfort concerns and intentions? When the insurance question was examined, it was discovered that the patient had unlimited coverage. The staff then could judge the case totally on medical and nursing grounds without the outside “distractions” of financial incentives. But in truth, there are always “distractions” that enter every case- clinical picture, resources, emotions, past wishes. The tube had real symbolic meaning to the staff in their caring for this woman, as it obviously did for the family. We are an inventive people, rapidly introducing creative technology to very practical applications long before the whole range of consequences is examined. Too often, our society and times search for short-term solutions for incredibly complex problems. These dilemmas will not be resolved quickly by the medical community with a novel cure-all medication or device, nor by legislation and court pronouncements argued in eloquent, logical language by lawyers, ethicists, and politicians. Indeed, no matter how clear the moral reasoning appears for withholding food and hydration from chronically ill and senile individuals, the Ameri-
Columns
Journal of Pain and Symptom Management
can people are not ready to deny this from an individual who can swallow, retain, and digest nourishment, even if this is what the person wishes. Our system of judicial and procedural checks and balances appears healthy, but may not be able to address rationally these complex issues. In a conflicting climate of government control, concern for containing costs and pronouncements from movements that call for “death with dignity,” methods, direction and safeguards for procedural change mandate close scrutiny. It is my hope that for terminal patients, decisions will be kept where they belong-if not with the person and his/her physician, then with the family and physician. This model of decisionmaking, I submit, is structured solidly on the assumption of the clinical expertise and competency of the physician, as well as with the patient’s right to self-determination. It is a model built, not on a physician’s arrogance of professional codes of conduct, nor fear of medical liability, nor irrational promises and expectations, but on mutual trust. No court action, legislation, ethics committee advice, living will readings, or proxy statements will enhance the moral activity of medical practice if trust in patient-family-physician triad is truly dead.
Journal of Pain and Symptom Management
Vol. 3 No. 4 Fall 1988
Columns
Column
A Philosophy of Care: Notes of a Deathwatcher Frank J. Brescia
The experience of persons suffering from hopeless illness raises powerful, emotional, and, at times, conflicting issues and concerns for the caregivers, whose responses to patients fundamentally affect the whole final experience of dying for each individual. The pluralism of our society that dwells so little on death creates enormous tensions and opposing suggestions as to the meaning, not of death, but of life. All patients known to be dying are “timebound” (terminal) and can be assumed to be hopelessly ill. However, the physician lacks the gift of prophecy. This terminal phase may be quite immediate or may be long-term; it is One may also define a usually indeterminate. group of patients who are hopelessly ill, but not terminal. They are not “time-bound’ by their illness, yet the sickness is obviously incurable. The point in time that signals the initiation of the dying process has always been difficult to determine. Yet the acceptance of this process of dying is crucial in eventually making correct, clear, and hopefully compassionate decisions. The problem for physicians is in defining the terminal status and in deciding what groups of patients are no longer treatable and for what reason. A large part of this dilemma derives from the judgment that treatment is no longer part of the necessary care for a particular patient. When do we choose not to give a drug, blood transfusion, or antibiotic to this dying patient? For the clinician, false “hopes” can be immoral. Initially, therapeutic trials make sense for difficult situations in which there is clinical uncertainty. To believe that treatment once begun Frank J. Hospital,
Brescia, MD, is Medical Bronx, New York.
Director,
0 U.S. Cancer Pain Relief Committee, 1988 Published by Elsevier, New York, New York
Calvary
cannot be stopped is wrong, however, because it omits reasonable trials to persons who may benefit from therapy. Later, after clinical uncertainty has passed, therapeutic trials may still be appropriate, both for clinical and compassionate reasons. Some families and patients have strong feelings of denial, guilt, and ambivalence, and they want continued treatment in the face of hopeless illness. Withdrawal of treatment may also be appropriate in this setting, however. Some patients and families are firmly convinced that the uncertainty of a therapeutic trial is not warranted; death seems a reasonable, accepted outcome, and the earlier death is welcome. Of all the therapeutic issues raised in this population, the decision to withhold feeding and hydration is especially difficult. Are not feeding and hydration morally necessary because these measures are “ordinary” and therefore obligatory? The terms ordinary and extraordinaly have been used since 1595 in discussions concerning the preservation of life. They are particularly relevant to the issues of feeding and hydration in hopeless illness. Ordinary care can be described as simple, natural, ususal, noninvasive, proportionate, inexpensive, and morally imperative. Extraordinary care, on the other hand, is complex, artificial, unusual, invasive, disproportionate, costly, and morally permissive. Usually, ordinary care is considered obligatory, while extraordinary care is optional. It is, however, confusing to make decisions on a case-by-case basis without critically examining their impact on the life of the patient. It appears that we are now often assessing the benefits and burdens of the means and not the person who must live the life prolonged by them. What is extraordinary today may become 08853924/88/$3.50
Vol. 3 No. 4 Fall 1988
quite ordinary tomorrow, but more important, what is ordinary to one individual today may be extraordinary to another. Whether a therapy is extraordinary or not is more an expression of the anticipated outcome than the reason for its use. Although the competent patient or surrogate can legally refuse both extraordinary and ordinary care, the entire language of ordinaryextraordinary no longer makes any sense in the dying patient. Patients known to be dying have no good alternatives, and the distinctions drawn between ordinary and extraordinary care may have no validity. For these patients, there may be a paradoxical obligation to withhold therapy, and this includes the medical interventions of nutrition and hydration. There should be no distinction, either legal or moral, between withholding and withdrawing futile medical interventions. Yet, it has always seemed easier for physicians not to start something than to discontinue it because of the perceived imperative to maintain therapy. This appears to be more of a psychologic dilemma than a moral one. What is indicated should be tried and what is a failure should be removed. This clearly misunderstood distinction has resulted in great suffering as clinicians have failed to give an adequate treatment trial, or have persisted in some form of futile intervention for long, exhausting, and costly periods of time. As decisionmakers, we try to obey laws and follow our moral principles, but we are not free from deep-seated feelings about the action chosen. These emotional and symbolic impressions can damage the logic in every case we see, even though we consider ourselves to be experienced, competent, skilled, and concerned people involved in the necessary care of the very sick. Consider, as an example, the following case: A 75-year-old childless woman is admitted to the hospital with progressive confusion. The patient is diagnosed as having a malignant brain tumor. She is treated with cortisone to reduce the brain swelling. There is dramatic reversal of the confusion, but she vehemently rejects any further diagnostic and treatment intervention. The situation worsens and she requires transfer to terminal care setting. At this time, the patient is unaware of her surroundings and is paralyzed. The day prior to the transfer, a nasogastric tube is inserted, at the request of the
Columns
213
patient’s sister. The patient’s clinical picture remains stable with little change, except for easily managed infections and seizures. Although the feeding tube falls out occasionally, it causes no serious problems and the nutritional status remains controlled. The patient’s sister now asks for the removal of the feeding tube since she sees no improvement. The staff (mostly nurses) is concerned that the request is initiated because of financial concerns, as there are rumors that the health insurance will terminate. This woman, initially incompetent, with no her final course real hope of cure, decided when she became competent, clear, and fully informed about the nature of her illness and outcome. The cancer would carry, on average, a survival of less than 40 weeks. Her decision was not to prolong the inevitable period and process of dying. The illness was incurable, and the clinician could not honestly argue with her rational and reasonable choice. However, the sister forced the health care team to evaluate their principles and their manner of care. When no longer cognizant, the patient could not establish her priorities nor explain what this illness and these circumstances meant to her. The tension and uneasiness that was raised by the sister’s request was bothersome to staff and physicians because it forced them to explore what they do daily and routinely without much questioning or challenge. If, indeed, this woman’s prognosis was not “time-bound” nor imminent, would it be more difficult to ponder the removal of the tube? Did the patient’s previous action set the standard for care after she could no longer communicate? Would the challenge have been greater to staff if the patient, when she was competent, had demanded aggressive treatment for her disease? The physician conceded that if he had to decide whether to insert the tube after the patient became unaware, he would not do it. However, it was quite obvious that he was uncertain about removing the tube without some general consensus from his peers that this was a correct action to follow. Is this a moral, legal, or psychologic dilemma for the doctor? If there were no sister, would the question have surfaced at all? If the rumor of insurance expiration did not arise, would there have been a challenge, even with the sister present? The staff, certainly, recognized similar situations with other patients on
214
the ward, but when the issue of money was raised, hadn’t the staff placed the sister and family on “trial,” doubting their pure comfort concerns and intentions? When the insurance question was examined, it was discovered that the patient had unlimited coverage. The staff then could judge the case totally on medical and nursing grounds without the outside “distractions” of financial incentives. But in truth, there are always “distractions” that enter every case- clinical picture, resources, emotions, past wishes. The tube had real symbolic meaning to the staff in their caring for this woman, as it obviously did for the family. We are an inventive people, rapidly introducing creative technology to very practical applications long before the whole range of consequences is examined. Too often, our society and times search for short-term solutions for incredibly complex problems. These dilemmas will not be resolved quickly by the medical community with a novel cure-all medication or device, nor by legislation and court pronouncements argued in eloquent, logical language by lawyers, ethicists, and politicians. Indeed, no matter how clear the moral reasoning appears for withholding food and hydration from chronically ill and senile individuals, the Ameri-
Columns
Journal of Pain and Symptom Management
can people are not ready to deny this from an individual who can swallow, retain, and digest nourishment, even if this is what the person wishes. Our system of judicial and procedural checks and balances appears healthy, but may not be able to address rationally these complex issues. In a conflicting climate of government control, concern for containing costs and pronouncements from movements that call for “death with dignity,” methods, direction and safeguards for procedural change mandate close scrutiny. It is my hope that for terminal patients, decisions will be kept where they belong-if not with the person and his/her physician, then with the family and physician. This model of decisionmaking, I submit, is structured solidly on the assumption of the clinical expertise and competency of the physician, as well as with the patient’s right to self-determination. It is a model built, not on a physician’s arrogance of professional codes of conduct, nor fear of medical liability, nor irrational promises and expectations, but on mutual trust. No court action, legislation, ethics committee advice, living will readings, or proxy statements will enhance the moral activity of medical practice if trust in patient-family-physician triad is truly dead.