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Withholding and Withdrawing Nutrition and Hydration: Surrogates Can Make This Decision for Incompetent Patients
with chronic illnesses, living wills are useful if present. When caring for patients who are acutely and emergently ill, living wills are overrated. A. jay Block, M.D., F.C.C.P. Gainesville, Florida Professor of Medicine and Anesthesiolog}; and Chief, Pulmonary Medicine, University of Florida; Editor-in-Chief, Chest. REFERENCES
Emanuel LL, Barry MJ, Stoekle JD, Ettelson LM, Emanual EJ. Advance directives for medical care: a case for greater use. N Engl J Med 1991; 324:889-95 2 Silverman HJ, Tuma P, Cara<.-ci L, Armistead N, Roahen S. Patient Self-Determination Act : effects on patients' awareness, knowledge, and discussions (.'(}n<.-erning advance directives. Am Rev Respir Dis 1993; 147:A108 3 Cammer Paris BE, Carrion VC, Medit<:h JS Jr, Capello CF, Mulvihill MN . Roadblocks to do-not-resuscitate orders: a study in policy implementation. Arch Intern Med 1993; 153:1689-95
Withholding and Withdrawing Nutrition and Hydration: Surrogates Can Make This Decision for Incompetent Patients neath, or the anticipation of it, provokes strong emotions in physicians. Preventing premature deaths is a common reason many physicians choose a career in medicine. It is not surprising, therefore, that ethical issues surrounding death and dying stimulate impassioned and sometimes conflicting sentiments. In this issue of Chest (see page 1892), Dr. Rosner argues that nutrition and hydration should be considered basic supportive care for all patients, and he states there is no time "when general supportive measures can be abandoned, thereby hastening the patient's demise, unless the patient specifically requests such withholding or withdrawal because of severe pain and! or suffering." Dr. Rosner apparently believes that families or surrogates do not have the right to request withholding or withdrawal of nutrition or hydration when patients are incompetent and have not left a clear record of their wishes. We do not share Dr. Rosner's opinion that incompetent patients should receive nutrition and hydration because it can be labeled only as supportive care. We present our reasoning for withholding artificially supplied food and water from certain patients, when families or surrogates believe it is what the patient would have wanted. When the body is ill, many distinctions between natural and artificial become blurred. It is natural, and almost without effort, that each of us breathes over 15,000 times a day. During that time, again with little effort, we eat three (or more) meals. Should we develop an illness whereby we cannot maintain ade1646
quate gas exchange (we have air hunger), mechanical or artificial ventilation is available. Similarly, should we develop a condition which prevents us from maintaining adequate nutrition or hydration, artificial means are available to provide these as well. Mechanical ventilation and artificial feeding may differ in their costs, invasiveness, and skill required for use, but both require trained medical personnel and are, in fact, medical interventions. A similar conclusion was reached by the Superior Court of California in Barber v Superior Court, in which two physicians faced murder charges for withdrawing nutrition and hydration from a patient with severe brain damage. Medical procedures to provide nutrition and hydration are more similar to other medical procedures than to typical human ways of providing nutrition and hydration. Their benefits and burdens ought to be evaluated in the same manner as any other medical pn><.-edure.'
Situations in which tube feeding may be withheld fall under four general categories. 2 The first group includes those patients for whom tube feedings cannot restore normal nutrition or hydration. For example, certain patients with extensive and severe burns will not survive, despite often arriving at the hospital alert. Patients with the most extensive burns can deteriorate quickly as a result of massive fluid loss; and there may come a point at which replacing fluid losses enterally or parenterally is futile. The second group consists of competent patients who refuse artificial nutrition and hydration. The third group of patients are the permanently unconscious. Although rare, there are a number of patients who have no reasonable chance of regaining consciousness and whose desires about tube feedings are not known. In these situations, physicians rely upon family or surrogates to speculate about what the patient would have wanted in the present situation. Is life prolongation in these circumstances a benefit or a burden to the patient? That question is best answered jointly by the patient's physician and his or her family or surrogate. When a decision to withhold feedings is made, there is an emerging legal consensus allowing physicians and hospitals to carry out the decision. 3 ·4 The Massachusetts Supreme Judicial Court in Brophy v New England Sinai Hospital supported the withdrawing of nutrition and hydration from a patient in a chronic, persistent vegetative state: In certain, thankfully rare circumstan<.-es, the burden of maintaining the <.~l'l>oreal existence degrades the very humanity it was meant to serve. The law remgnizes the individual's right to preserve his humanity even if to preserve his humanity to allow processes of a disease or affiiction to bring about a death with dignity.'
A fourth, and arguably most difficult, group of patients for whom tube feedings may be withheld are those for whom this treatment provides more burden than benefit. The demented elderly who can no longer feed themselves is one such group. There are significant risks associated with tube feeding. Indwelling EdHorials
nasogastric (NG) tubes are uncomfortable and often provoke agitation. They can cause esophageal erosions leading to chronic blood loss. Nasogastric tubes, no matter how well secured , are frequently pulled out by patients. This increases the risks of aspiration and pneumonia. In order to prevent patients from removing their NG tubes, sedation or physical restraints may be needed. Either of these types of restraints is clearly associated with its own risks and burdens. 6 Even with percutaneous enterogastrostomy tubes, there remains a significant risk of pneumonia for those receiving long-term feeding. Ideally, hand feeding should be attempted for those patients not able to feed themselves. Although this may provide insufficient calories, it may provide the patient with significant psychological benefit, because it offers more interpersonal interaction compared to tube feeding. 7 For certain patients, the possible benefits of improved nutrition with tube feedings may be outweighed by the risks and/or burdens associated with their use . For these patients, the decision not to initiate artificial nutrition and hydration may be appropriate. Is it likely that patients do not want to think about issues such as tube feedings? Even seven years ago, most patients did not only think about complex issues such as these, but 75 percent of one group of patients stated they would refuse tube feedings if they had such severe memory loss that they could not identify people, were confused about where they were, were unable to care for themselves, or had no chance for recovery.H In addition, most patients want to discuss these issues with their physicians, although only a minority do .H We encourage physicians to discuss the use of advance directives with their patients. When discussing the use oflife-sustaining treatments, it is important to specifically address the use of feeding tubes.9 It is impossible, however, to predict, discuss, and document what a patient may want for all possible future clinical scenarios. Because of this, should the patient become incompetent, the patient's family or surrogate should, together with the physician, make judgments about what they believe the patient would have wanted . Dr. Rosner clearly disagrees with this. He believes an incompetent patient, whose wishes about tube feedings were not specifically discussed prior to becoming incompetent, should be provided with artificial feeding. The substituted judgment of the patient's family or surrogate cannot replace the patient's need for general supportive care (including food and water), according to Rosner. Rosner would concur with Daniel Coburn, the guardian appointed for Karen Quinlan who said, As to the theory that she's (Karen Quinlan) not really leaving this earth-that she's just getting to the next world a little bit soone r-in all frankness to the court , and I'm not trying to be flippant , my attitude is that if the Quinlans want an express,
I'm going to take the local. One human being, by conduct, or lack of mnduct, is going to cause the death of another human being."'
Karen Quinlan died more than 10 years after being transferred to a nursing home. Despite her family's contention that Karen had previously expressed a desire not to exist in a vegetative state, she did so with a NG tube, and for a very long time. What benefit did she receive by remaining alive? Would a patient, who does not want to be kept alive should they enter a vegetative state, who becomes incompetent before they have a chance to document this fact benefit from artificial feeding? If a patient discusses this with a spouse, should this fact be ignored? Families, like physicians, usually try to do what they feel is best for their loved ones (patient). We should not ignore this fact . Physicians who believe incompetent patients should always receive artificial nutrition and hydration, regardless of what the family or surrogate believes, should inform their patients of this fact . Wellmeaning physicians can disagree about particular courses of action. Patients should not have to suffer because their physicians did not discuss these issues with them. David E. Clarke , M.D. , Mary Kane Goldstein, M.D., and Thomas A. Raffin, M.D., F.C .C.P. Stanford, Calif Dr. Clarke is from the Division of Pulmonary and Critical Care Medicine, and Dr. Goldstein is Director of Graduate Medical Education for Gerontology, Palo Alto VA Medical Ce nter. Dr. Raffin is Chief of the Division of Pulmonary and Critical Care Medicine, and Co-Director of the Stanford Universitv Center for Biomedical Ethics. · Reprint requests: Dr: Raffin, Pulrrwnary and Critical Care , Stanford University Medical Center; Stanford, CA 94305-5236
REFERENCES
2
3 4 5 6 7 8 9 10
Barber v Superior Court of Los Angeles, 147 Cal App 3d 1006, 195 Cal Rptr 484: 1983 Lynn J, Glover J. Ethical decision-making in enteral nutrition. In : Rombeau P, Coldwell MD, eds. Enteral and tube feeding. Philadelphia: WB Saunders, 1990 Brophy v New England Sinai Hospital, Inc, 398 Mass 417, 497 N.E. 2d 626 (1986) Corbett v D A ' IIessandro, 487 So 2d 368 (Fia Dis Ct. App); review denied, 492 So 2d 1331 (Fia 1986) Brophy v New England Sinai Hospital, Inc, 390 Mass 417, 497 N.E . 2d 626 (1986) Goldstein MK. Ethical considerations in pharmamtherapy of the aged . Drug & Aging 1991; 1:91-7 LoB, Dornbrand L. Guiding the hand that feeds : caring for the demented elderly. N Engl J Med 1984; 3ll :402-04 Lo B, McLeod GA , Saida G . Patients attitudes to discussing life-sustaining treatment. Arch Intern Med I986; 146:1613-15 Steinbrook R, Lo B. Artificial feeding-solid ground , not a slippery slope. N Eng) J Med 1988; 318:286-90 Morse R. In the matter of Karen Quinlan: the wmplete legal briefs, court proceedings, and decisions in the Superior Court of New Jersey, Vols. 1 and 2 . Frederick Md , University Publications of America, 1982 CHEST I 104 I 6 I DECEMBER, 1993
1647
Emanuel LL, Barry MJ, Stoekle JD, Ettelson LM, Emanual EJ. Advance directives for medical care: a case for greater use. N Engl J Med 1991; 324:889-95 2 Silverman HJ, Tuma P, Cara<.-ci L, Armistead N, Roahen S. Patient Self-Determination Act : effects on patients' awareness, knowledge, and discussions (.'(}n<.-erning advance directives. Am Rev Respir Dis 1993; 147:A108 3 Cammer Paris BE, Carrion VC, Medit<:h JS Jr, Capello CF, Mulvihill MN . Roadblocks to do-not-resuscitate orders: a study in policy implementation. Arch Intern Med 1993; 153:1689-95
Withholding and Withdrawing Nutrition and Hydration: Surrogates Can Make This Decision for Incompetent Patients neath, or the anticipation of it, provokes strong emotions in physicians. Preventing premature deaths is a common reason many physicians choose a career in medicine. It is not surprising, therefore, that ethical issues surrounding death and dying stimulate impassioned and sometimes conflicting sentiments. In this issue of Chest (see page 1892), Dr. Rosner argues that nutrition and hydration should be considered basic supportive care for all patients, and he states there is no time "when general supportive measures can be abandoned, thereby hastening the patient's demise, unless the patient specifically requests such withholding or withdrawal because of severe pain and! or suffering." Dr. Rosner apparently believes that families or surrogates do not have the right to request withholding or withdrawal of nutrition or hydration when patients are incompetent and have not left a clear record of their wishes. We do not share Dr. Rosner's opinion that incompetent patients should receive nutrition and hydration because it can be labeled only as supportive care. We present our reasoning for withholding artificially supplied food and water from certain patients, when families or surrogates believe it is what the patient would have wanted. When the body is ill, many distinctions between natural and artificial become blurred. It is natural, and almost without effort, that each of us breathes over 15,000 times a day. During that time, again with little effort, we eat three (or more) meals. Should we develop an illness whereby we cannot maintain ade1646
quate gas exchange (we have air hunger), mechanical or artificial ventilation is available. Similarly, should we develop a condition which prevents us from maintaining adequate nutrition or hydration, artificial means are available to provide these as well. Mechanical ventilation and artificial feeding may differ in their costs, invasiveness, and skill required for use, but both require trained medical personnel and are, in fact, medical interventions. A similar conclusion was reached by the Superior Court of California in Barber v Superior Court, in which two physicians faced murder charges for withdrawing nutrition and hydration from a patient with severe brain damage. Medical procedures to provide nutrition and hydration are more similar to other medical procedures than to typical human ways of providing nutrition and hydration. Their benefits and burdens ought to be evaluated in the same manner as any other medical pn><.-edure.'
Situations in which tube feeding may be withheld fall under four general categories. 2 The first group includes those patients for whom tube feedings cannot restore normal nutrition or hydration. For example, certain patients with extensive and severe burns will not survive, despite often arriving at the hospital alert. Patients with the most extensive burns can deteriorate quickly as a result of massive fluid loss; and there may come a point at which replacing fluid losses enterally or parenterally is futile. The second group consists of competent patients who refuse artificial nutrition and hydration. The third group of patients are the permanently unconscious. Although rare, there are a number of patients who have no reasonable chance of regaining consciousness and whose desires about tube feedings are not known. In these situations, physicians rely upon family or surrogates to speculate about what the patient would have wanted in the present situation. Is life prolongation in these circumstances a benefit or a burden to the patient? That question is best answered jointly by the patient's physician and his or her family or surrogate. When a decision to withhold feedings is made, there is an emerging legal consensus allowing physicians and hospitals to carry out the decision. 3 ·4 The Massachusetts Supreme Judicial Court in Brophy v New England Sinai Hospital supported the withdrawing of nutrition and hydration from a patient in a chronic, persistent vegetative state: In certain, thankfully rare circumstan<.-es, the burden of maintaining the <.~l'l>oreal existence degrades the very humanity it was meant to serve. The law remgnizes the individual's right to preserve his humanity even if to preserve his humanity to allow processes of a disease or affiiction to bring about a death with dignity.'
A fourth, and arguably most difficult, group of patients for whom tube feedings may be withheld are those for whom this treatment provides more burden than benefit. The demented elderly who can no longer feed themselves is one such group. There are significant risks associated with tube feeding. Indwelling EdHorials
nasogastric (NG) tubes are uncomfortable and often provoke agitation. They can cause esophageal erosions leading to chronic blood loss. Nasogastric tubes, no matter how well secured , are frequently pulled out by patients. This increases the risks of aspiration and pneumonia. In order to prevent patients from removing their NG tubes, sedation or physical restraints may be needed. Either of these types of restraints is clearly associated with its own risks and burdens. 6 Even with percutaneous enterogastrostomy tubes, there remains a significant risk of pneumonia for those receiving long-term feeding. Ideally, hand feeding should be attempted for those patients not able to feed themselves. Although this may provide insufficient calories, it may provide the patient with significant psychological benefit, because it offers more interpersonal interaction compared to tube feeding. 7 For certain patients, the possible benefits of improved nutrition with tube feedings may be outweighed by the risks and/or burdens associated with their use . For these patients, the decision not to initiate artificial nutrition and hydration may be appropriate. Is it likely that patients do not want to think about issues such as tube feedings? Even seven years ago, most patients did not only think about complex issues such as these, but 75 percent of one group of patients stated they would refuse tube feedings if they had such severe memory loss that they could not identify people, were confused about where they were, were unable to care for themselves, or had no chance for recovery.H In addition, most patients want to discuss these issues with their physicians, although only a minority do .H We encourage physicians to discuss the use of advance directives with their patients. When discussing the use oflife-sustaining treatments, it is important to specifically address the use of feeding tubes.9 It is impossible, however, to predict, discuss, and document what a patient may want for all possible future clinical scenarios. Because of this, should the patient become incompetent, the patient's family or surrogate should, together with the physician, make judgments about what they believe the patient would have wanted . Dr. Rosner clearly disagrees with this. He believes an incompetent patient, whose wishes about tube feedings were not specifically discussed prior to becoming incompetent, should be provided with artificial feeding. The substituted judgment of the patient's family or surrogate cannot replace the patient's need for general supportive care (including food and water), according to Rosner. Rosner would concur with Daniel Coburn, the guardian appointed for Karen Quinlan who said, As to the theory that she's (Karen Quinlan) not really leaving this earth-that she's just getting to the next world a little bit soone r-in all frankness to the court , and I'm not trying to be flippant , my attitude is that if the Quinlans want an express,
I'm going to take the local. One human being, by conduct, or lack of mnduct, is going to cause the death of another human being."'
Karen Quinlan died more than 10 years after being transferred to a nursing home. Despite her family's contention that Karen had previously expressed a desire not to exist in a vegetative state, she did so with a NG tube, and for a very long time. What benefit did she receive by remaining alive? Would a patient, who does not want to be kept alive should they enter a vegetative state, who becomes incompetent before they have a chance to document this fact benefit from artificial feeding? If a patient discusses this with a spouse, should this fact be ignored? Families, like physicians, usually try to do what they feel is best for their loved ones (patient). We should not ignore this fact . Physicians who believe incompetent patients should always receive artificial nutrition and hydration, regardless of what the family or surrogate believes, should inform their patients of this fact . Wellmeaning physicians can disagree about particular courses of action. Patients should not have to suffer because their physicians did not discuss these issues with them. David E. Clarke , M.D. , Mary Kane Goldstein, M.D., and Thomas A. Raffin, M.D., F.C .C.P. Stanford, Calif Dr. Clarke is from the Division of Pulmonary and Critical Care Medicine, and Dr. Goldstein is Director of Graduate Medical Education for Gerontology, Palo Alto VA Medical Ce nter. Dr. Raffin is Chief of the Division of Pulmonary and Critical Care Medicine, and Co-Director of the Stanford Universitv Center for Biomedical Ethics. · Reprint requests: Dr: Raffin, Pulrrwnary and Critical Care , Stanford University Medical Center; Stanford, CA 94305-5236
REFERENCES
2
3 4 5 6 7 8 9 10
Barber v Superior Court of Los Angeles, 147 Cal App 3d 1006, 195 Cal Rptr 484: 1983 Lynn J, Glover J. Ethical decision-making in enteral nutrition. In : Rombeau P, Coldwell MD, eds. Enteral and tube feeding. Philadelphia: WB Saunders, 1990 Brophy v New England Sinai Hospital, Inc, 398 Mass 417, 497 N.E. 2d 626 (1986) Corbett v D A ' IIessandro, 487 So 2d 368 (Fia Dis Ct. App); review denied, 492 So 2d 1331 (Fia 1986) Brophy v New England Sinai Hospital, Inc, 390 Mass 417, 497 N.E . 2d 626 (1986) Goldstein MK. Ethical considerations in pharmamtherapy of the aged . Drug & Aging 1991; 1:91-7 LoB, Dornbrand L. Guiding the hand that feeds : caring for the demented elderly. N Engl J Med 1984; 3ll :402-04 Lo B, McLeod GA , Saida G . Patients attitudes to discussing life-sustaining treatment. Arch Intern Med I986; 146:1613-15 Steinbrook R, Lo B. Artificial feeding-solid ground , not a slippery slope. N Eng) J Med 1988; 318:286-90 Morse R. In the matter of Karen Quinlan: the wmplete legal briefs, court proceedings, and decisions in the Superior Court of New Jersey, Vols. 1 and 2 . Frederick Md , University Publications of America, 1982 CHEST I 104 I 6 I DECEMBER, 1993
1647