The left liberal mainstream media heaped scorn and ridicule on Sarah Palin when she famously predicted that under Obamacare Americans would be put to death by “Death Panels.” She was not engaging in idle speculation. The reality is that already Americans are being put to death by death panels otherwise known as hospital ethics committees and she was simply predicting that the practice would become more widespread if, and when, Obamacare becomes fully operational.
The question of who decides when the ‘plug should be pulled’ has always plagued society and the question is nowhere more pertinent and legitimate when the case involves a person who has no living relatives and who has not designated a health surrogate.
That problem has always existed but now the demographics of the United States suggest that it is more urgent than ever that a morally acceptable answer be found. The reason is because the population is aging and the birthrate is low with the result that an increasing number of people are going to face the end of their life without any family to make the ultimate decision whether or not to continue medical treatment.
Thaddeus Pope, who seems to be a supporter of the “third way” of euthanasia, in the article below from the current issue of the New England Journal of Medicine argues for the decision to be made by an ethics committee, preferably one not associated with the hospital in order to avoid an obvious conflict of interest. Perhaps that is an acceptable solution, but I doubt it. In my opinion we must continue to search for a better solution than empowering ethics committees. The danger is that they can become “death panels” similar to what Sarah Palin warned against.
Making Medical Decisions for Patients without Surrogates
Thaddeus Mason Pope, J.D., Ph.D.
N Engl J Med 2013; 369:1976-1978November 21, 2013DOI: 10.1056/NEJMp1308197
People who are decisionally incapacitated but haven’t provided advance directives for their health care and have no health care surrogates — sometimes called the “unbefriended” or “unrepresented” — are some of the most powerless and marginalized members of society. Most of the unrepresented are elderly, homeless, mentally disabled, or socially alienated. Yet medical decision making for these vulnerable patients often lacks even minimally sufficient safeguards and protections. Consequently, health care decisions made on their behalf are at risk of being biased, arbitrary, corrupt, or careless.
Most U.S. states have similar processes for making treatment decisions on behalf of patients without capacity (see tableMechanisms and Sources of Authority for Substitute Decision Making.).1 In an emergency, clinicians can treat patients without their consent. For nonemergency situations, patients may have completed a Physician Orders for Life-Sustaining Treatment (POLST) form or advance directive with instructions that clearly address their current circumstances, or they may have appointed a health care agent or durable power of attorney. But most patients have taken neither of these steps, so 43 states have “default surrogate” laws specifying who can make decisions. In most of these states, a spouse is designated first, followed by adult children, parents, siblings, and often other relatives and friends.
None of these decision-making mechanisms, however, can help the unrepresented. They have no POLST forms, no advance directives, no agents, and no default surrogates. And the unrepresented are a big group — including some elderly and mentally disabled patients, as well as many who are homeless or socially isolated. In many states, lesbian, gay, bisexual, or transgendered patients may have same-sex partners who could serve as decision makers but are not legally recognized as surrogates. Experts estimate that 3 to 4% of the 1.3 million people living in U.S. nursing homes2 and 5% of the 500,000 per year who die in intensive care units3 are unrepresented.
Who can consent to treatment on behalf of these unrepresented patients? In almost every state, the only legally authorized decision maker is the court-appointed guardian.2 But that solution is usually inadequate, for several reasons: the judicial process is too slow and cumbersome relative to the need for treatment decisions, it’s expensive, and guardians often lack time, given their heavy caseloads, to learn about the patient. The biggest problem, though, is that guardians are often unavailable.2 Most court-appointed guardians are family members, but unrepresented patients have no available family. Professional guardians are unwilling to serve if the patient has no resources. In many states, not even the use of public guardians is practicable. For example, in 2010, Georgia enacted a new medical-guardian statute specifically to help the unrepresented, but a recent survey of Georgia probate judges indicates that the law is ineffective because there’s a shortage of people willing to serve.4
So what happens to unrepresented patients when there is nobody authorized to consent to medical decisions? Clinicians exercise substituted judgment to the extent that that’s possible. Otherwise, they aim to make decisions that are in the patient’s best interest. But when clinicians do not hear the “voice” of the patient, they may provide treatment discordant with his or her preferences, values, and best interest.5
We can do better. Most model and institutional policies start with prevention, by promoting measures that aim to keep patients from becoming unrepresented in the first place. That means, first of all, protecting and promoting patients’ ability to make their own health care decisions to the greatest extent possible. Capacity is not all or nothing; it fluctuates and can often be preserved through “supported decision making,” such as assisting the person to make and communicate preferences and choices. Second, while patients still have capacity, they should be helped to complete an advance directive appointing an agent and an alternate agent, so that when they really do lose capacity they will have someone to make treatment decisions. Third, in cases in which no agent or default surrogate is initially available, a thorough and diligent search should be conducted. Often, a surrogate can eventually be found2 — and even if that turns out not to be the case, casting a wide net to include friends and pastors can at least provide evidence of the patient’s values and treatment preferences.
But for many patients, even improved preventive measures won’t work. If we can’t keep the patient from becoming unrepresented, who should make treatment decisions? Who should play the role of surrogate and apply the substituted-judgment and best-interest standards? Today, most decisions for the unrepresented are made by physicians alone, with no hospital oversight.3 This practice is understandable. Physicians appreciate the risks, benefits, and alternatives of various treatment options. And they can make quick decisions.
But their responsiveness and expertise notwithstanding, physicians often do not make good surrogates.5 Indeed, most states specifically prohibit patients from selecting their physicians as surrogates. Without a separate surrogate, the clinician’s conflicts of interest and biases related to disability, race, and culture all remain unchecked.5 In addition, when physicians don’t need to explain their treatment decisions to another decision maker, the bases for those decisions are less clearly articulated and more susceptible to the physician’s idiosyncratic treatment style. In short, I believe that the risks associated with unilateral decision making by physicians outweigh the benefits.
We must strike an appropriate balance between a decision maker who is responsive and can make timely decisions and a decision maker who is independent from the treating clinicians. Occupying this middle ground, I would argue, is the ethics committee. These committees are typically composed of at least a physician, a nurse, a social worker, a bioethicist, and a community member. The ethics committee applies the same decision-making standards as the individual physician decision maker. But the committee has greater ability to discover and diligently represent the patient’s wishes, to offer and consider various perspectives, and to weigh both medical and nonmedical considerations.
Ideally, this ethics committee would be external to the health care facility, like the committees used for unrepresented patients in the New York and Texas mental health systems. Many areas of the country already have citywide or regional ethics committees that could assume this role. But even an intramural committee would be a substantial safeguard, at least until novel solutions are developed. This solution should not be resource-intensive, since almost all hospitals already have an ethics committee.
Unfortunately, only five states have formally empowered existing institutional multidisciplinary committees to make treatment decisions for unrepresented patients. The remaining states have no clear legislative or regulatory guidelines,2 so in order to ensure transparency and fair process for unrepresented patients, it is up to facilities to develop their own institutional policies. So long as legally sanctioned mechanisms are nonexistent or inadequate, I believe that providers have both the duty and the discretion to design these policies.
The best approach would carefully balance due process and efficiency. Clearly, we need a decision-making process that not only is accessible, quick, convenient, and cost-effective but also provides the important safeguards of expertise, neutrality, and careful deliberation. Ideally, the mechanisms we develop would not only increase the quality of decisions but also provide a greater sense of social legitimacy.
Disclosure forms provided by the author are available with the full text of this article at NEJM.org.
From the Health Law Institute, Hamline University School of Law, Saint Paul, MN.