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Discontinuing the LVAD: Ethical considerations
Discontinuing the LVAD: Ethical Considerations Tia P. Powell, MD, and Mehmet C. Oz, M D Departments of Psychiatry and Surgery, College of Physicians and Surgeons, Columbia University, New York, New York
he d e v e l o p m e n t of i m p l a n t a b l e left ventricular assist devices (LVADs) opens new vistas in patient care, while s i m u l t a n e o u s l y d r a w i n g attention to ethical p r o b lems in the use of such technology. Such ethical questions include w h e n and u n d e r what conditions we ought to start, stop, or refrain from initiating t r e a t m e n t with such a device. W e will briefly review the relevant literature [1, 2] a n d then consider the issue of w h e n to stop treating, which remains one of the most complex ethical d i l e m m a s that clinicians face.
T
Futility: Facts Versus Values Some physicians have t u r n e d to the concept of futility as a w a y of clarifying w h e n to stop life-sustaining therapies. However, attempts to formulate a scientifically rigorous a n d quantifiable definition of futility have proved m o r e illusory than real [3]. For instance, some p r o p o n e n t s of futility have a r g u e d that physicians n e e d neither offer nor continue therapies that have proved ineffective in the last 100 similar cases [4]. This definition appeals because of its a p p a r e n t l y objective nature but in practice w o u l d be virtually impossible to use. With new t h e r a p i e s such as the LVAD, or in complex cases such as those seen in tertiary care centers, there m a y not be 100 similar cases. Furthermore, m e m o r y is notoriously inaccurate in such assessments, a n d few physicians are in a position to m a k e a statistically rigorous review of on-going acute care decisions. However, even if h a r d data were reliably available, we w o u l d not find t h e m conclusive in deciding to cease treatment. We do not believe that facts alone ought to guide the decision to w i t h d r a w life-sustaining treatment. Rather, we r e c o m m e n d that such decisions be viewed as containing radically different types of information, ie, both facts a n d values [5]. The physician contributes the expert a s s e s s m e n t of the outcome of treatment or its cessation. The patient and family, however, are likely to have greater expertise on the patient's spiritual and other values. These values are an essential c o m p o nent in u n d e r s t a n d i n g the m e a n i n g to the patient of the various options. Some authors note that although a t r e a t m e n t m a y a p p e a r futile to outsiders, they wish to respect the wishes of patients a n d families even in their choice of potentially futile treatments [6]. We a p p r o a c h decisions to discontinue LVAD treatm e n t in the following manner. First, at the initiation of
Address reprint requests to Dr Oz, Department of Surgery, ColumbiaPresbyterian Medical Center, 177 Fort Washington Ave, New York, NY 10032(e-mail: [email protected]). © 1997 by The Society of Thoracic Surgeons Published by Elsevier Science Inc
treatment, we a t t e m p t to learn as m u c h as possible about the patient's objectives in seeking treatment, as m a n y of these patients will go on to lose d e c i s i o n - m a k i n g capacity. The decision to limit t r e a t m e n t is always a difficult one b u t can b e c o m e m o r e so w h e n the patient's wishes r e m a i n obscure. In m a n y cases, the patient's family will communicate the patient's wishes, a n d this information can be e n o r m o u s l y valuable. In certain jurisdictions, such as New York State, it is difficult to cease life-sustaining treatments without clear a n d convincing evidence of the patient's wishes. W e specifically hope to learn about those circumstances in which the patient w o u l d not wish to continue treatment. For instance, some of our patients have b e e n clear that if t h e y cannot live at home, or if they suffer severe a n d lasting cognitive damage, they w o u l d not wish to continue LVAD support. W h e n we confront circumstances that force us to consider LVAD discontinuation, we m a k e careful assessments of prognosis. However, we do not argue that doctors m u s t base their r e c o m m e n d a t i o n s exclusively on factual data. Indeed, m a n y patients specifically ask p h y sicians w h a t they personally w o u l d choose in such a situation. W e r e c o m m e n d that physicians provide both careful d a t a - b a s e d a s s e s s m e n t s of prognosis and subjective assessments, clearly l a b e l e d as such. This information m a y be followed by a r e c o m m e n d a t i o n to cease therapy, w h e n appropriate, a n d a direct question as to w h e t h e r or not the family concurs with this plan or has reservations. Such an a p p r o a c h allows for an a p p r o p r i a t e balance b e t w e e n factual information a n d values. Some advocates of patients' rights m a y find that this a p p r o a c h tips the balance of p o w e r unfairly toward the physician. However, we do not find that patients' interests are served b y the practice of simply listing options and forcing patients or their loved ones to choose. W h e n no reasonable options exist, a u t o n o m y is not served by p r e t e n d i n g that choice r e m a i n s [7]. Rather, m a n y family m e m b e r s experience an exclusively objective presentation as cruelly b u r d e n i n g t h e m with the decision to a b a n d o n a p p a r e n t l y useful treatments. We prefer to m a k e r e c o m m e n d a t i o n s a n d acknowledge that these r e c o m m e n d a t i o n s are b a s e d on facts a n d our values, as well as on our u n d e r s t a n d i n g of the patient's values. W e then encourage the patient or family to express different values when they exist. Not all families have concurred with our r e c o m m e n d a t i o n s to discontinue LVAD therapy. However, we have not enc o u n t e r e d a case w h e r e we found it necessary or a p p r o priate to discontinue the LVAD in the face of objections from a patient's family. Ann Thorac Surg 1997;63:1223-4 ° 0003-4975/97/$17.00 PII S0003-4975(97)00233-6
1224
EDITORIAL POWELLAND OZ ETHICS OF LVAD
Do Not Resuscitate Orders and Discontinuing the LVAD The m e a n i n g of a do not resuscitate (DNR) o r d e r is radically altered for a patient who is mechanically ventilated a n d s u p p o r t e d with an LVAD, for the chronic t r e a t m e n t of these patients already surpasses the m e a sures envisioned by a d v a n c e d cardiac life s u p p o r t protocols. To enact a DNR o r d e r for a patient receiving LVAD s u p p o r t suggests withdrawing, and not merely withholding, care. Although ethicists have for m a n y years insisted that there is no ethical difference b e t w e e n w i t h d r a w i n g a n d withholding treatments, m a n y physicians still believe that there is a p r o f o u n d psychological difference b e t w e e n the two [8]. However, there are compelling reasons to view w i t h d r a w i n g a n d withholding care as morally equivalent. One such justification is described in the l a n d m a r k case Barber v Los Angeles County Superior Court [91: Even though these life support devices are, to a degree "self-propelling', each pulsation of the respirator or each drop of fluid introduced into the patient's body by intravenous feeding devices is comparable to a manually administered injection or item of medication. Hence, "disconnecting" of the mechanical devices is comparable to withholding the manually administered injection or medication. An additional reason to equate withholding a n d withd r a w i n g t r e a t m e n t is that doctors who believe that lifesustaining therapies cannot be w i t h d r a w n will be forced to d e n y the technology to some patients who have a small b u t real possibility of benefit. A trial of LVAD support, with the possibility of withdrawal if unsuccessful, opens up a potentially hopeful option for the gravely ill patient. If no t r e a t m e n t can be withdrawn, such marginally app r o p r i a t e patients m a y lose their last chance. Doctors m u s t explicitly a d d r e s s the discontinuation of the device with the family. It is not a p p r o p r i a t e to conceal discontinuation of the device by suggesting vaguely that further resuscitation efforts are no longer appropriate. Not uncommonly, families m a y agree w h o l e h e a r t e d l y with the decision to make a patient DNR a n d discontinue the LVAD. However, they cannot bring themselves to sign the DNR form, for the act of signing can symbolically force loved ones to feel responsible for the death of the patient. W e do not insist on signatures in such cases, nor does New York State law require us to do so. Rather, we explicitly discuss the plan and its likely consequences
Ann Thorac Surg 1997;63:1223-4
with the family, and note in the chart that they concur yet prefer not to sign a n y form. Both the ethics committee and risk m a n a g e r s at our institution s u p p o r t this practice. Pain control a n d sedation are ethically a p p r o p r i a t e to comfort any dying patient, including one for w h o m life-sustaining m e a s u r e s are discontinued [10]. Does the use of the LVAD a n d other n e w technologies radically change end-of-life decision-making? Yes a n d no. The hallmark of good medical decisions in any era is the a p p r o p r i a t e balance of medical opinion a n d expertise with the patient's values a n d wishes. The introduction of new technology does not change this fact. However, n e w devices do force us to reexamine our practices, a n d to ask w h e n a n d how it is wise to e m p l o y or w i t h d r a w a treatment. The use of advance directives m a y serve as a useful starting point for discussions b u t cannot substitute for i n - d e p t h efforts to learn how patients assess benefits and burdens. W e do not believe that any treatment, once initiated, n e e d be m a i n t a i n e d once its b u r d e n s to the patient outweigh its benefits. Doctor Mehmet C. Oz was supported by an Irving Fellowship.
References 1. Lo B, Jonsen A. Clinical decisions to limit treatment. Ann Intern Med 1980;93:764-8. 2. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991;115:478-85. 3. Truog R, Brett A. The problem with futility. N Engl J Med 1992;326:1560-3. 4. Schneiderman LJ, Jecker NS, Jonson AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112: 949-54. 5. Callahan D. Medical futility, medical necessity: the problemwithout-a-name. Hastings Center Report 1991;July-Aug: 30-5. 6. Wear S, Logue G. The problem of medically futile treatment: falling back on a preventive ethics approach. J Clin Ethics 1995;6:138-48. 7. Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA 1990;264:1276-80. 8. The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Indianapolis: Indiana University Press, 1987. 9. Barber v Los Angeles County Superior Court, 195 Cal Rptr 484, 147 Cal App 3d 1006 (1983). Cited in: Schneiderman L, Spragg R. Ethical decisions in discontinuing mechanical ventilation. N Engl J Med 1988;318:984-8. 10. Wilson WC, Smedira NG, Fink C, McDowell JA. Ordering and administration of sedatives and analgesics during the withholding and withdrawal of life support from critically ill patients. JAMA 1992;267:949-53.
he d e v e l o p m e n t of i m p l a n t a b l e left ventricular assist devices (LVADs) opens new vistas in patient care, while s i m u l t a n e o u s l y d r a w i n g attention to ethical p r o b lems in the use of such technology. Such ethical questions include w h e n and u n d e r what conditions we ought to start, stop, or refrain from initiating t r e a t m e n t with such a device. W e will briefly review the relevant literature [1, 2] a n d then consider the issue of w h e n to stop treating, which remains one of the most complex ethical d i l e m m a s that clinicians face.
T
Futility: Facts Versus Values Some physicians have t u r n e d to the concept of futility as a w a y of clarifying w h e n to stop life-sustaining therapies. However, attempts to formulate a scientifically rigorous a n d quantifiable definition of futility have proved m o r e illusory than real [3]. For instance, some p r o p o n e n t s of futility have a r g u e d that physicians n e e d neither offer nor continue therapies that have proved ineffective in the last 100 similar cases [4]. This definition appeals because of its a p p a r e n t l y objective nature but in practice w o u l d be virtually impossible to use. With new t h e r a p i e s such as the LVAD, or in complex cases such as those seen in tertiary care centers, there m a y not be 100 similar cases. Furthermore, m e m o r y is notoriously inaccurate in such assessments, a n d few physicians are in a position to m a k e a statistically rigorous review of on-going acute care decisions. However, even if h a r d data were reliably available, we w o u l d not find t h e m conclusive in deciding to cease treatment. We do not believe that facts alone ought to guide the decision to w i t h d r a w life-sustaining treatment. Rather, we r e c o m m e n d that such decisions be viewed as containing radically different types of information, ie, both facts a n d values [5]. The physician contributes the expert a s s e s s m e n t of the outcome of treatment or its cessation. The patient and family, however, are likely to have greater expertise on the patient's spiritual and other values. These values are an essential c o m p o nent in u n d e r s t a n d i n g the m e a n i n g to the patient of the various options. Some authors note that although a t r e a t m e n t m a y a p p e a r futile to outsiders, they wish to respect the wishes of patients a n d families even in their choice of potentially futile treatments [6]. We a p p r o a c h decisions to discontinue LVAD treatm e n t in the following manner. First, at the initiation of
Address reprint requests to Dr Oz, Department of Surgery, ColumbiaPresbyterian Medical Center, 177 Fort Washington Ave, New York, NY 10032(e-mail: [email protected]). © 1997 by The Society of Thoracic Surgeons Published by Elsevier Science Inc
treatment, we a t t e m p t to learn as m u c h as possible about the patient's objectives in seeking treatment, as m a n y of these patients will go on to lose d e c i s i o n - m a k i n g capacity. The decision to limit t r e a t m e n t is always a difficult one b u t can b e c o m e m o r e so w h e n the patient's wishes r e m a i n obscure. In m a n y cases, the patient's family will communicate the patient's wishes, a n d this information can be e n o r m o u s l y valuable. In certain jurisdictions, such as New York State, it is difficult to cease life-sustaining treatments without clear a n d convincing evidence of the patient's wishes. W e specifically hope to learn about those circumstances in which the patient w o u l d not wish to continue treatment. For instance, some of our patients have b e e n clear that if t h e y cannot live at home, or if they suffer severe a n d lasting cognitive damage, they w o u l d not wish to continue LVAD support. W h e n we confront circumstances that force us to consider LVAD discontinuation, we m a k e careful assessments of prognosis. However, we do not argue that doctors m u s t base their r e c o m m e n d a t i o n s exclusively on factual data. Indeed, m a n y patients specifically ask p h y sicians w h a t they personally w o u l d choose in such a situation. W e r e c o m m e n d that physicians provide both careful d a t a - b a s e d a s s e s s m e n t s of prognosis and subjective assessments, clearly l a b e l e d as such. This information m a y be followed by a r e c o m m e n d a t i o n to cease therapy, w h e n appropriate, a n d a direct question as to w h e t h e r or not the family concurs with this plan or has reservations. Such an a p p r o a c h allows for an a p p r o p r i a t e balance b e t w e e n factual information a n d values. Some advocates of patients' rights m a y find that this a p p r o a c h tips the balance of p o w e r unfairly toward the physician. However, we do not find that patients' interests are served b y the practice of simply listing options and forcing patients or their loved ones to choose. W h e n no reasonable options exist, a u t o n o m y is not served by p r e t e n d i n g that choice r e m a i n s [7]. Rather, m a n y family m e m b e r s experience an exclusively objective presentation as cruelly b u r d e n i n g t h e m with the decision to a b a n d o n a p p a r e n t l y useful treatments. We prefer to m a k e r e c o m m e n d a t i o n s a n d acknowledge that these r e c o m m e n d a t i o n s are b a s e d on facts a n d our values, as well as on our u n d e r s t a n d i n g of the patient's values. W e then encourage the patient or family to express different values when they exist. Not all families have concurred with our r e c o m m e n d a t i o n s to discontinue LVAD therapy. However, we have not enc o u n t e r e d a case w h e r e we found it necessary or a p p r o priate to discontinue the LVAD in the face of objections from a patient's family. Ann Thorac Surg 1997;63:1223-4 ° 0003-4975/97/$17.00 PII S0003-4975(97)00233-6
1224
EDITORIAL POWELLAND OZ ETHICS OF LVAD
Do Not Resuscitate Orders and Discontinuing the LVAD The m e a n i n g of a do not resuscitate (DNR) o r d e r is radically altered for a patient who is mechanically ventilated a n d s u p p o r t e d with an LVAD, for the chronic t r e a t m e n t of these patients already surpasses the m e a sures envisioned by a d v a n c e d cardiac life s u p p o r t protocols. To enact a DNR o r d e r for a patient receiving LVAD s u p p o r t suggests withdrawing, and not merely withholding, care. Although ethicists have for m a n y years insisted that there is no ethical difference b e t w e e n w i t h d r a w i n g a n d withholding treatments, m a n y physicians still believe that there is a p r o f o u n d psychological difference b e t w e e n the two [8]. However, there are compelling reasons to view w i t h d r a w i n g a n d withholding care as morally equivalent. One such justification is described in the l a n d m a r k case Barber v Los Angeles County Superior Court [91: Even though these life support devices are, to a degree "self-propelling', each pulsation of the respirator or each drop of fluid introduced into the patient's body by intravenous feeding devices is comparable to a manually administered injection or item of medication. Hence, "disconnecting" of the mechanical devices is comparable to withholding the manually administered injection or medication. An additional reason to equate withholding a n d withd r a w i n g t r e a t m e n t is that doctors who believe that lifesustaining therapies cannot be w i t h d r a w n will be forced to d e n y the technology to some patients who have a small b u t real possibility of benefit. A trial of LVAD support, with the possibility of withdrawal if unsuccessful, opens up a potentially hopeful option for the gravely ill patient. If no t r e a t m e n t can be withdrawn, such marginally app r o p r i a t e patients m a y lose their last chance. Doctors m u s t explicitly a d d r e s s the discontinuation of the device with the family. It is not a p p r o p r i a t e to conceal discontinuation of the device by suggesting vaguely that further resuscitation efforts are no longer appropriate. Not uncommonly, families m a y agree w h o l e h e a r t e d l y with the decision to make a patient DNR a n d discontinue the LVAD. However, they cannot bring themselves to sign the DNR form, for the act of signing can symbolically force loved ones to feel responsible for the death of the patient. W e do not insist on signatures in such cases, nor does New York State law require us to do so. Rather, we explicitly discuss the plan and its likely consequences
Ann Thorac Surg 1997;63:1223-4
with the family, and note in the chart that they concur yet prefer not to sign a n y form. Both the ethics committee and risk m a n a g e r s at our institution s u p p o r t this practice. Pain control a n d sedation are ethically a p p r o p r i a t e to comfort any dying patient, including one for w h o m life-sustaining m e a s u r e s are discontinued [10]. Does the use of the LVAD a n d other n e w technologies radically change end-of-life decision-making? Yes a n d no. The hallmark of good medical decisions in any era is the a p p r o p r i a t e balance of medical opinion a n d expertise with the patient's values a n d wishes. The introduction of new technology does not change this fact. However, n e w devices do force us to reexamine our practices, a n d to ask w h e n a n d how it is wise to e m p l o y or w i t h d r a w a treatment. The use of advance directives m a y serve as a useful starting point for discussions b u t cannot substitute for i n - d e p t h efforts to learn how patients assess benefits and burdens. W e do not believe that any treatment, once initiated, n e e d be m a i n t a i n e d once its b u r d e n s to the patient outweigh its benefits. Doctor Mehmet C. Oz was supported by an Irving Fellowship.
References 1. Lo B, Jonsen A. Clinical decisions to limit treatment. Ann Intern Med 1980;93:764-8. 2. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991;115:478-85. 3. Truog R, Brett A. The problem with futility. N Engl J Med 1992;326:1560-3. 4. Schneiderman LJ, Jecker NS, Jonson AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112: 949-54. 5. Callahan D. Medical futility, medical necessity: the problemwithout-a-name. Hastings Center Report 1991;July-Aug: 30-5. 6. Wear S, Logue G. The problem of medically futile treatment: falling back on a preventive ethics approach. J Clin Ethics 1995;6:138-48. 7. Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA 1990;264:1276-80. 8. The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Indianapolis: Indiana University Press, 1987. 9. Barber v Los Angeles County Superior Court, 195 Cal Rptr 484, 147 Cal App 3d 1006 (1983). Cited in: Schneiderman L, Spragg R. Ethical decisions in discontinuing mechanical ventilation. N Engl J Med 1988;318:984-8. 10. Wilson WC, Smedira NG, Fink C, McDowell JA. Ordering and administration of sedatives and analgesics during the withholding and withdrawal of life support from critically ill patients. JAMA 1992;267:949-53.