Two Transatlantic Viewpoints on an Ethical Quandary

JOHN M. LUCE and FRANÇOIS LEMAIRE

Departments of Medicine and Anesthesia, University of California, San Francisco, and San Francisco General Hospital, San Francisco, California; Reanimation Medicale, University of Paris, Paris, and Hopital Henri Mondor, Creteil, France

	THE CASE

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Mrs. A. L. is a 67-yr-old woman who is admitted to the intensive care unit (ICU) with severe dyspnea. She is diagnosed as having acute respiratory distress syndrome caused by overwhelming pneumococcal pneumonia. She is treated with intravenous fluids and antibiotics, and with mechanical ventilation with positive end-expiratory pressure. Twelve days after admission, she develops a right-sided pneumothorax that is treated with tube thoracostomy. On Day 18 of her hospitalization Mrs. A. L. receives amphotericin for disseminated candidiasis. Her renal function worsens, and she has anasarca. You consider performing continuous venovenous hemofiltration. Mrs. A. L. has no advance directives. Her adult son and daughter, who have been at her bedside every day, request hemofiltration and continued aggressive care, "because that's what our mother would want and what we want for her."

	THE ISSUES

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The case of Mrs. A. L. raises a number of specific issues under the general topic of withholding and withdrawal of life-sustaining therapy. They include the arguably futile nature of critical care in some circumstances; whether "futility" takes different forms; the occasional demands of patients, and, more often, of family members and other surrogates for continued treatment; the question of whether physicians should provide requested therapy that they consider nonbeneficial; and the nature of physicians' actual responses to the demands of patients and families. In this discussion, we two physiciansone from the United States and one from Francedescribe how we and our colleagues would deal with Mrs. A. L. and her children.

	A VIEWPOINT FROM THE UNITED STATES

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Mrs. A. L. is likely to die soon from multiple organ failure whether or not she receives hemofiltration. As a result, some physicians in the United States would withhold this treatment and perhaps withdraw mechanical ventilation from her on the grounds that these measures are medically futile in that they cannot confer long-term benefit. Nevertheless, the interventions are not physiologically futile because they can maintain Mrs. A. L.'s life, albeit not indefinitely. Because I believe that only physiologically futile therapies can be withheld or withdrawn by physicians without patient or surrogate agreement, I would not limit Mrs. A. L.'s therapy at this point. Nor would I justify unilateral foregoing of treatment through the ethical principles of beneficence and nonmaleficence, which compel physicians to help patients and avoid harm.

Instead, I believe that Mrs. A. L. or her surrogates should be allowed to decide what treatment she should receive. My position is in keeping with the principle of autonomy, which affirms the patient's right of self-determination. Autonomy is paralleled in American common and constitutional law by the doctrines of informed consent and informed refusal. Under the doctrine of informed consent, physicians may not treat patients without their consent except in emergency situations. Under the doctrine of informed refusal, patients are free to refuse any and all treatments, even if their refusal appears unwise and they may be injured in the process.

The doctrine of informed refusal was first applied to the issue of limiting life-sustaining therapy in the case of in re Quinlan (1). In this case, the Supreme Court of the State of New Jersey permitted the parents of a vegetative patient to remove a mechanical ventilator from her and thereby preserve her right to bodily privacy. In the case of Cruzan v Director (2), the U. S. Supreme Court stated its willingness to assume that competent patients have a right to refuse treatment based on the liberty guaranteed by the 14th Amendment to the U.S. Constitution. However, the Court allowed states to restrict the role of surrogates in making medical decisions for incompetent patients in the absence of "clear and convincing evidence" of the patients' wishes. Yet surrogate requests are honored in most states of the United States, including California, where I practice.

Because Mrs. A. L. cannot make decisions for herself, her son and daughter's wishes are legally determining in my state. Whether her children can truly speak for their mother is questionable, however. So is the ability of any person to know what another would want in a life-threatening situation, as the Supreme Court noted in its decision in Cruzan. Indeed, because of Cruzan, some states, such as Missouri and New York, make it difficult for families like Mrs. A. L.'s to make end-of-life decisions on behalf of relatives who lack advance directives. Nevertheless, I believe that family members usually are the most appropriate persons to represent their loved one's interests, and more so than physicians. As a result, I will allow Mrs. A. L.'s children to make decisions for her.

Of course, I want her son and daughter to decide against aggressive treatment, not to insist that I continue it. Yet so far they have asked me to provide therapy that I consider incapable of conferring long-term benefit, even if it is not physiologically futile. In addition to having a negative right to refuse therapy, do Mrs. A. L.'s children also have a positive right to request it for their mother? And must I accede to their wishes when such wishes are not my own?

Unfortunately, these questions are not well answered in American ethics or law. On the one hand, physicians are not required to act in a manner contrary to their principles or those of the medical profession (3). On the other hand, however, courts in the United States generally have ordered continued treatment when asked to resolve disputes between families who favor treatment and physicians who consider it futile (4). Judges also seem unwilling to cause the death of a patient; this was seen in the matter of Baby K, when the court was asked to approve in advance a physician's decision to withdraw life-sustaining treatment, and refused to do so (5).

Regardless of what American courts have or have not done, it could be argued that my primary ethical responsibility is to Mrs. A. L., not to her son and daughter, and that it would be irresponsible to prolong her suffering unnecessarily. Yet I probably can prevent Mrs. A. L. from suffering by administering sedatives and analgesics to her. Furthermore, even though she is my primary responsibility, I am also treating her children, as is so often the case with dying patients, and I want her death to be good for them, too. I am therefore influenced not only by what Mrs. A. L.'s son and daughter think their mother would want, but also by what they want for themselves. For example, do her children want her kept alive only long enough to be assured that her treatment is not being discontinued prematurely? Or do they rule out any discontinuation of treatment because they believe that a miracle will save her?

Regardless of the family's beliefs, my professional duty is to inform the son and daughter of their mother's prognosis as I see it, and of what various interventions can and cannot achieve. I also am obligated to express both my concern that their mother may suffer if the interventions are pursued, and my commitment to ease her suffering. Overall, I would make a strong recommendation for limiting life-sustaining treatment in preference for measures that provide comfort. With that recommendation, I would stress that neither I nor they would be abandoning Mrs. A. L. by giving her palliative rather than restorative care.

If the son and daughter agree with my recommendation, I would not order hemofiltration. Instead, I would withdraw the ventilator from Mrs. A. L. while making her as comfortable as possible with sedatives and analgesics. On the other hand, If Mrs. A. L.'s children do not accept my recommendation, I would negotiate with them for a time-limited trial of hemofiltration and other ongoing treatments, hoping that they would eventually accept their mother's poor prognosis. In studies (6, 7) we have conducted at San Francisco General Hospital and the University of California, San Francisco, such acceptance almost invariably occurred if families were given enough time.

If Mrs. A. L.'s son and daughter still insist on continued support, I have several options, not including going to the courts, which I do not think would side with me for reasons given earlier. For one, I could ask that our hospital ethics committee become involved in the case. That body is useful in facilitating communication and reaching consensus when physicians, patients, and surrogates disagree, although it is not empowered to make clinical decisions. Alternatively, I could ask a facilitator, such as a clergyperson or social worker, to help mediate between Mrs. A. L.'s family and me.

Another possible approach would be for me to refuse to provide hemofiltration and accept the possible legal consequences. Although the courts have strongly strengthened the rights of patients and surrogates in recent years, they also have supported the integrity of the medical profession. A significant factor underlying physicians' legal status is the great respect accorded them by judges and juries in the United States. As a result, physicians rarely are brought to trial for withholding or withdrawing life support and administering palliative care, even to the point that they appear to have hastened death intentionally, provided that they do so with the consent of patients or their surrogates (8).

Furthermore, in instances in which they withdraw care without consent, physicians are unlikely to be successfully prosecuted in criminal court or sued in civil cases if they act within accepted professional standards. For example, in the recent case of Gilgunn v Massachusetts General Hospital (9), a jury exonerated physicians in Massachusetts after they wrote a do-not-resuscitate order and removed a mechanical ventilator from a patient over the objections of her daughter because they considered her care to be futile.

Even if Mrs. A. L.'s son and daughter brought a civil suit against me, my care of their mother would meet professional standards, and I would argue that she did not die wrongfully. Nevertheless, provoking them to such a point would damage all of us unnecessarily. It would also compromise my treatment plan, which mandates that Mrs. A. L.'s death be as comforting to her children as it is to her. Furthermore, because the law on medical futility is undeveloped in the United States and there is not yet a consensus that unilateral withholding or withdrawal of life support is ethically acceptable, I cannot say that I have a strong right in refusing Mrs. A. L.'s children's demands.

My final option is to follow Mrs. A. L.'s son and daughter's wishes and support her until she dies, which should not take long. At her death, I would not attempt cardiopulmonary resuscitation (CPR) even if the children insisted on it. This admittedly would be a unilateral act on my part. Nevertheless, I believe that my obligation to grant surrogate wishes stops short of treatments that I consider physiologically futile. The same position was taken by physicians in our studies (6, 7) who continued to support dying patients at their families' request but refused to attempt CPR.

The course of acceding to patient or surrogate demands for aggressive care short of that which is physiologically futile takes more time, requires greater patience, and consumes more medical resources than other courses. It also rarely is necessary, because most families in the United States want their loved ones to die in peace when death is imminent, and are gratified when physicians and nurses offer palliative care. Nevertheless, the course of acceding to demands for everything but futile care is most consistent with American law and ethics. As such, it is the one I would pursue.

Would the majority of American physicians follow a course similar to mine? As I said earlier, some would withhold hemofiltration or perhaps withdraw mechanical ventilation from Mrs. A. L. unilaterally. This practice is suggested by the responses to a survey of American Thoracic Society members conducted by Asch and colleagues (10), in which a significant number of physicians said they had terminated life-sustaining therapy without the knowledge or consent of patients or surrogates. Nevertheless, I believe that my approach would be preferred by many physicians in the United States. Which approach prevails in the future will depend on ethical and legal clarification of what physicians may do in the name of medical futility.

	A VIEWPOINT FROM FRANCE

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Mrs. A. L. is most likely going to die soon. More precisely, however, the question is when and how. The first step in end-of-life decisionmaking, in French ICUs, as everywhere else, is to be convinced personally, as the attending physician in charge, and to convince the entire care team (juniors, physicians, fellows, consultants, nurses, and others) that Mrs. A. L.'s prognosis is that bleak. Simultaneously, of course, what her family understands of the situation and expects from us has to be known to everyone in charge. Ideally, for those patients already hospitalized in the ICU for several days, good communication between doctors, nurses, and family should have provided an optimal understanding of the situation. Limitation of acute care is today commonplace in Europe, and that includes France. The recent large incidence LATAREA study, still unpublished but reported at several large national meetings (11), revealed unexpectedly that 50% of ICU deaths were preceded by a decision to withhold or withdraw life support.

However, the question raised by Mrs. A. L.'s story is what to do when the family refuses acute care limitation whereas the medical team believes limitation of care is reasonable. The traditional European attitude (it is probably more accurate to say "continental" attitude, since the United Kingdom has a much stronger and older attitude of consulting and respecting patients' surrogates' views) has been to withdraw life-support therapies unilaterally, without telling the family. Because visiting hours in most European ICUs are still very limited (a few hours a day), it is easy to withdraw mechanical ventilation clearly in association with heavy sedationand to then tell the family that their loved one died naturally and as had been expected. This is obvious paternalism, clearly at odds with current North American standards, even if this once largely prominent tenet is now evolving and being constantly challenged by increasing autonomy. In European medicine, the main ethical imperative has always been the principle of beneficence, mainly directed to patients themselves. In ICUs, however, most patients are comatose, sedated, incompetent, and, when conscious, stressed and highly dependent on the medical team. They cannot be interviewed. Advance directives are rare, and they have practically no legal value in most European countries. Additionally, it is usually argued that patients may have changed their minds since they wrote those directives, and that the latter rarely apply to the present and specific situation. Accordingly, the patients' wishes and values are not known to the medical team who will act "in their best interest."

But the physician's duty is not restricted to the patient: it also encompasses the patient's family. The attending physician has to protect the family, which implies making difficult decisions, again in the patient's and family's best interest, most frequently without informing or consulting them. The underlying assumption here is that if family members were allowed to take responsibility for end-of-life decisions concerning their loved ones, they might feel guilty for prolonging the latters' agony or for electing their death, depending on the decision they would have made. Nevertheless, the story of a Ms. Siff, asked by physicians to make life-and-death decisions about her father, a 91-yr-old man admitted to a Boston ICU in a comatose state and mechanically ventilated after several strokes, may indicate that North American families do not necessarily behave differently from European ones. As reported by the New York Times in 1997 (12), Ms. Siff said that her decisions "still haunted her more than a year after his death."

Maurice Rapin, a European pioneer in intensive care medicine and a founder of French medical ethics, wrote in 1985 (13): "is it possible to solicit the families in such delicate decisions (end-of-life decisions in the ICU)? It seems difficult, (even) impossible. I am absolutely convinced that physicians must (themselves) take those decisions." Sjorkist (14), questioning Swedish physicians on "who should make those end-of-life decisions?" reported that 61% of physicians answered that it was the responsibility of physicians alone. The British Medical Association recently published a guide for withholding and withdrawal of life support (15) that gives a not dissimilar view: "it is essential that those consultedthose closest to the patientare absolutely clear that, ultimately, the treatment decision is not their right or their responsibility. Rather, the decision will be made by the clinician in charge of the patient's care on the basis of what he or she considers will benefit the patient."

But even if physicians were to involve families in end-of-life decisions, the next of kin have absolutely no formal rights in most European countries. French law does not recognize any legal responsibility to family members: the patient is either competent, and responsible for her- or himself, or incompetent, in which case the physician must accordingly act in the patient's best interest. This is basically what the British Medical Association guide also says. In Germany, a surrogate may have some decisionmaking capacity, but must be designated by the Court.

Even the concept of autonomy, which is paramount in American medicine and viewed as the patient's capacity to be self-determining, has a different connotation in Europe. In Kantian philosophy, autonomy of individuals is in fact severely limited by the universality and rationality that this concept comprises. Ultimately, an acceptance of such autonomy may act against the free will of individuals, should they end their life, for instance, or compromise their bodily integrity. Similarly, in "La France des Lumiéres," Jean-Jacques Rousseau explains that a "social contract" frees human beings from their natural (which in the context used means "animal") condition and provides them with true liberty, which paradoxically is to obey laws they have created themselves. These roots of our continental philosophy are obviously far from the English concept of habeas corpus and the philosophy of John Stuart Mill, which are the ground for North American laws and practice. In France, the situation is even more diverse, since individuals are not supposed to be the owners of their bodies. Historians taught us that this peculiarity comes from the Latin Code of Laws, which was later incorporated into the Christian tradition. According to this tradition, the bodies of humans belong to God, not to themselves. In France this sovereignty was later transferred to the Catholic king, and, after the French revolution, to the state. Accordingly, it is forbidden in France to sell one's blood or organs. Only "donations" are permitted. Therefore, both the basic principle and the societal context of beneficence imply that French physicians have the moral duty to protect their patients' bodies, even against patients' own will.

However, even in Southern Europe, times are changing. In France and Belgium, recent lawsuits against intensivists who withdrew mechanical ventilation from agonal patients show evidence of how practices and national legislation may be at odds with one another. The United Kingdom is considering giving more rights to patients' surrogates. The French National Ethics Committee has cautiously opened the door to "an exception for euthanasia," heretofore considered murder, and has acknowledged that withdrawal and withholding of life support may result in "hastening death." Belgian policymakers are openly discussing legalization of euthanasia. Families are informed of end-of-life decisions more frequently and at an unexpectedly rapid pace. However, information does not mean active participation, and even less, decision-making capacity granted to family members. It is most likely that the next step in Europe will be an increase in the involvement of families, in life-determining decisions, which means more daily patient-situation updates, more explanations about diseases and prognoses, and more attempts at knowing patients' values and preferences. This trend, clearly apparent in France these days, would seem to be irreversible under the pressure of patients' associations and activists, the progress of consumerism, better information for laypersons through the media, the growing fear of litigation, and probably also the strong influence of British- American literature and concepts, so prominent worldwide in medicine and medical ethics.

Given all of this, what would have been my decision in the case of Mrs. A. L.? Whereas 10 or 15 yr ago I would have withdrawn mechanical ventilation without informing her two children or consulting the nursing staff, I certainly would not do so today. If, after having explained the futility of currently available care, I were unable to convince them that withdrawal of life-sustaining therapies was the only reasonable option, I would announce the withholding of any further treatment escalation, which in Mrs. A. L.'s story would have meant foregoing hemofiltration. Should the family insist that hemofiltration be implemented, I would tell them that it would impose upon their mother more suffering and useless promulgation of agony. Edelman and coworkers (16) have convincingly shown that in Israel, a country where withdrawal of life support is illegal, withholding of life-sustaining therapies is effective in limiting futile care. In their series the time from foregoing further therapy until death was only 2.9 d, a span not markedly longer than that after more drastic withdrawal.

Yet bioethicists keep telling us that there is no ethical difference between withdrawal and withholding of life support, but only a slight "emotional" distinction. When physicians and nurses are interviewed and asked if they find no difference between withdrawal and withholding of life support, however, they overwhelmingly answer that they do believe there is a difference. Solomon and colleagues (17) reported that two-thirds of physicians and three-quarters of nurses, when interviewed by questionnaire, replied that there was such a difference. Similar results have been reported recently in Sweden (18). Physicians and nurses know that the outcome of these two limitations of life-sustaining therapies is different: 95% mortality for withdrawal and only 50% for withholding of life-sustaining therapy were reported in the LATAREA study (11). Withdrawal of mechanical ventilation from a sedated patient, with or without extubation, leads rapidly to death. Withholding of life-sustaining therapies has a much more delayed and unpredictable effect. The recognition that withdrawal and withholding of life-sustaining treatments are perceived as being different for the actors in the field may obligate physicians to carefully reconsider their intentions when faced with end-of-life decisions, and could, paradoxically, help in making those decisions. Perhaps it is time to recognize that "physicians are better served by maintaining a clarity of purpose and a frank admission that death is the goal of withdrawal of care" (16). Taking this for granted, and forgetting the comfortable and forgiving "double effect" concept, which is now severely questioned (20) and actually irrelevant in the present context, should make end-of-life decisions easier in the ICU. Those who feel uncomfortable with the withdrawal of life support should be encouraged to implement a policy of withholding it in their ICU if they find such a policy more acceptable. In both strategies, open discussions with families are urgently needed, and in France are today occurring with increasing frequency.

	References

TOP THE CASE THE ISSUES A VIEWPOINT FROM THE... A VIEWPOINT FROM FRANCE REFERENCES

1. In re Quinlan, 755 A2A 647 (NJ), cert denied, 429 70 N.J. 10, 355 A 2d 647 (1976).

2. Cruzan v Director, Missouri Department of Health, 497 US 261, 110 S. CT 2841 (1990).

3. Luce JM. Physicians do not have a responsibility to provide futile or unreasonable care if a patient or family insists. Crit Care Med 1995; 23: 760-766 [Medline].

4. Johnson SH, Gibbons VP, Goldner JA, Wiener RL, Etan O. Legal and institutional policy responses to medical futility. J Health Hosp Law 1997; 30: 21-36 [Medline].

5. In the Matter of Baby K. 16 F3d (4th cir 1999).

6. Smedira NG, Evans BH, Grais LS, Cohen NH, Lo B, Cooke M, Schecter WP, Fink C, Epstein-Jaffe E, May C. Withholding and withdrawal of life support from the critically ill. N Engl J Med 1990; 322: 309-315 [Abstract].

7. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support for the critically ill. Am J Respir Crit Care Med 1997; 155: 15-20 [Abstract].

8. Alpers A. Criminal act or palliative care? Prosecutions involving the care of the dying. J Law Med Ethics 1998; 26: 308-331 [Medline].

9. Gilgunn v Massachusetts General Hospital, No. 92-4820 (Mass. Super. Ct. Civ. Action Suffolk So. April 22, 1995).

10. Asch DA, Hansen-Flaschen J, Lanker PN. Decisions to limit or continue life-sustaining treatments by critical care physicians in the United States: conflicts between physicians' practices and patients' wishes. Am J Respir Crit Care Med 1995; 151: 288-292 [Abstract].

11. Ferrand E, Robert R, Ingrand P, Lemaire F. the French LATAREA group. 2000. Withholding and withdrawal of life support in ICUs. A French national survey. Lancet 2001; 357: 9-14 [Medline].

12. Fein EB. Death and dignity: the things that don't get said. International Herald Tribune. March 6, 1997.

13. Rapin M. In Retrouver la vie: histoire, pouvoirs et limites de la réanimation, vol. 1 R. Laffont, Paris, 1980;181-182.

14. Sjorkvist P, Nilstum T, Svantesson M, Berggren L. Withdrawal of life support: who should decide? Intensive Care Med 1999; 25: 949-954 [Medline].

15. British Medical Association. Withholding and withdrawing life-prolonging medical treatments: guidance for decision making. BMJ Books, London, 1999.

16. Eidelman LA, Jakobson DJ, Geber D, Lebovitz L, Sprung CL. Foregoing life-sustaining treatment in Israeli ICU. Intensive Care Med 1998; 24: 162-166 [Medline].

17. Solomon MZ. Decisions near the end of life: professional view on life-sustaining treatments. Am J Public Health 1993; 83: 14-22 [Abstract/Free Full Text].

18. Melltrop G, Nilstun T. The difference between withholding and withdrawing life-sustaining treatment. Intensive Care Med 1997; 23: 1264-1267 [Medline].

19. Gilligan T, Raffin TA. Rapid withdrawal of support. Chest 1995; 108: 1407-1408 [Free Full Text].

20. Doyal L. The moral character of clinicians or the best interests of patients? Br Med J 1999; 318: 1432-1433 [Free Full Text].