Little Hope for Medical Futility

Is there any chance that a determination of medical futility by competent physicians might permit the cessation of treatment for patients regardless of what the patient, the advance directive, or the surrogate decision maker might say? Despite the fact that at least one state, Texas, has recognized physician determination of futility as an adequate basis for ultimately withdrawing care,1 the future of futility assessment, as well as downstream actions based on those assessments, looks bleak. Some recent cases give ample reason why a society increasingly committed to respecting patient autonomy and family wishes at the end of life will find little role for futility determinations, no matter how sound and deliberative they may be.2 Further, gaps in medical records and a lack of continuity in patient care often prevent the most sound assessments of appropriateness when patients or their family members are motivated to seek futile care.3 If futility assessment has no future, then what are physicians to do? They may seek to improve end-of-life care to make it less stressful for patients, family, and staff.4 They may enhance efforts at early communication and mediation with families as soon as they perceive a gap between hope and medical reality.2-5 They may seek another somewhat neglected strategy—creating ways of more clearly framing care and communicating about it—that makes it less likely that futility will ever be reached. These and related issues are addressed by 2 articles in the current issue of Mayo Clinic Proceedings. They are authored by Burkle and Benson3 and Swetz et al.4 Why are the prospects for futility so bleak? Consider the case of Ruben Betancourt, widely discussed in legal, ethical, and medical circles.6-8 Ruben Betancourt died on May 29, 2009. Twelve months earlier, the 73-year-old Betancourt had undergone surgery at Trinitas Regional Medical Center in New Jersey to remove a thymus gland tumor. All had gone well during the surgery, but somehow, during his postoperative recovery, Mr Betancourt's breathing tube became disconnected. He suffered severe, irreversible brain damage. As a result, he subsequently required a ventilator, kidney dialysis, and a feeding tube. After the family sought treatment at other facilities, Betancourt was readmitted to Trinitas.6 The physicians at Trinitas believed that to continue treating Mr Betancourt was pointless. He would never recover, his brain was permanently and severely damaged, his kidneys would never work again, and his skin would only continue to deteriorate. They advised the family that ongoing treatment would be futile and inhumane. Mr Betancourt's family did not agree. Believing Mr Betancourt was still responsive despite a diagnosis of persistent vegetative state, they sought and won a court order prohibiting Trinitas from withdrawing life support without their consent.6-8 The hospital, in the face of unanimous opinion that further care outside palliation was futile, unilaterally imposed a do-not-resuscitate (DNR) order on Mr Betancourt. In March 2009, the family went to court and persuaded a judge to have the DNR order rescinded. The hospital and some of his treating physicians then went to court to restore the DNR order and to seek the right to withdraw kidney dialysis. Another judge forbade the hospital from stopping care or imposing a DNR order. That decision was appealed.8 In the midst of the appeal, Ruben Betancourt, who at this point remained utterly unresponsive and whose clinical condition had progressively deteriorated, died. The case of Ruben Betancourt is a classic paradigm of a patient receiving futile care. Mr Betancourt could not benefit from treatment, and no technology could restore his brain, breathing, digestion, or excretion. Yet time and again in his case and many others, courts, when faced with loving family members who seek to continue treatment, yield to autonomy over professional determination of futility.9 There is no reason to think in autonomy-obsessed America10 that other courts—or for that matter legislatures or even commissions—would differ in according autonomy pride of place as the determinative value when patients clash with physicians over the provision of utterly useless and ineffectual treatment. Despite the repeated demonstration that the American public wants autonomy respected at nearly any price when it comes to how individuals die in a health care setting, some continue to see a future for formal medical futility assessment in resolving difficult cases. I do not. However, there are some steps that might and should be taken that could reduce the need to battle over a concept that has proven to have little traction in seeking to do what is best for patients. These steps involve lessening the chance that patients and families will want to struggle against impossible odds and at great cost to their dignity and bodily integrity.5,11 Physicians and nurses need to be measured in offering hope to patients and families. Hope is a powerful ally in fighting serious disease and terminal illness, but when false hope is tied to expectations for miracles, then hope is converted to an expectation of a positive outcome when none is possible.11 Miracles happen, but expectations for them ought not be the building blocks for comforting patients and families. Short-term goals and little victories are a much more sound foundation for hope.12 When major medical procedures are initiated, there should always be some discussion of when they will be stopped.13,14 Patients, family, and friends who know that a left ventricular assist device is a destination therapy and that the destination is a grim one or that dialysis when started and helpful will possibly be stopped at some point before death are far more likely to accept the limits of medicine than those who see a technologic treatment started without any mention that it may well be stopped. Physicians must feel free to offer their opinions about what course of care is best. Somehow in battling the evil of paternalism, the idea has flourished that autonomy prohibits physicians from venturing a view about what ought to be done in end-of-life care settings. Physicians are often unwilling to give their own professional opinions about how to manage care, preferring instead to present patients or their surrogates with options, evidence, and likely prognoses so that patients or surrogates can freely decide what they want. However, this is a parlous and thin notion of autonomy. Autonomy is not threatened by hearing the thoughtful opinion of experts about what they deem the best course of action. Autonomy is also not so fragile that it cannot withstand challenging, tough questioning, or probing to make sure that choices are truly informed, authentic, and sincere.15 In seeking consent to stop care, physicians ought not fear introducing their experience and evidence-based point of view in framing patients' and surrogates' choices. Physicians should be open to dissent, push back, and disagreement, but making an expert view known is part of patient advocacy. Patient autonomy in medicine is not, contrary to some recent claims, the same as customer autonomy in a chain restaurant.16 Physicians are not waiters, and the options that exist to treat the very sick and dying are not offerings on a menu. True autonomy requires advice and dialogue. Merely doing what the patient or surrogate says is not respecting autonomy but rather permitting preference, fear, guilt, and fantasy to substitute for it. Battling to get recognition for futility policies does not hold much promise of resolving the hardest battles at the bedside. Improving how we communicate about courses of care does.