Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients Without Healthcare Surrogates

Abstract

How should we make medical decisions for incapacitated patients who have no available legally-authorized surrogate decision maker? Because these patients lack decision making capacity, they cannot authorize treatment themselves. Because they lack a surrogate, nobody else can authorize treatment either. Clinicians and researchers have referred to these individuals as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. Clinicians and researchers have also described them as “unimaginably helpless,” “highly vulnerable,” and as the “most vulnerable,” because “no one cares deeply if they live or die.”

The persistent challenges involved in obtaining consent for medical treatment on behalf of these individuals is an immense problem in ethics and patients’ rights. Some commentators describe caring for the unbefriended as “one of the most difficult problems in medical decision making.” Others call it the “single greatest category of problems” encountered in bioethics consultations.

Appropriately, this problem is getting more attention. Major policy reports from both legal and medical associations have focused on decision making for the unbefriended. Perhaps most notably, the elite mainstream media has repeatedly covered the problem of the unbefriended in the United States. Decision-making for the unbefriended has also been the primary topic of recent day-long or multi-day conferences, both themed, subject-specific conferences, and individual sessions at several national and regional professional association meetings.

Finally, the problem of the unbefriended has received increasing attention not only in the meeting halls of conferences, but also in the pages of academic literature. New articles have been printed in law journals, medical journals, nursing journals, long-term care journals, and bioethics journals. Even the popular media is covering the problem.

But while the problem has been increasingly recognized and acknowledged, it has not yet been adequately mitigated or resolved. In 1987, the Hastings Center released Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. The eminent bioethics think tank observed that “no decision making mechanism is widely available to find attentive surrogates for the many people without them. There is also as yet no consensus on the proper solution.”

Nearly thirty years later, far too little has changed. There is still no consensus on the proper solution. Across the United States, few jurisdictions have developed laws or policies that adequately protect this most vulnerable population. “Existing mechanisms to address the issue of decision-making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.”

In 2015, the Institute of Medicine made substantially the same pessimistic observations in its own comprehensive report on end-of-life care. And in 2016, American Geriatrics Society updated its earlier 1996 position statement. The AGS identified “significant state-to-state variability in legal approaches to unbefriended patients.” And it concluded that these variations “create confusion for health care providers,” resulting in “harms including treatment delays or prolongation of potentially burdensome treatments."

The purpose of this Article is to help improve the quality of healthcare decision making for the unbefriended. I hope that this comprehensive and systematic explanation of both the problem and the available solutions will empower both public and clinical policymakers to develop more informed and more circumspect policies and procedures.

In Section I, I review traditional mechanisms to protect prospective autonomy. The law has devised several tools (such as advance directives and surrogates) that permit individuals to control their future medical treatment in the event one that they lose decision-making capacity. Unfortunately, none of these tools are available for the unbefriended. In Section II, I more carefully define “unbefriended patient,” assess the size of the unbefriended population, and examine demographics and causal factors.

In Section III, I describe four risks and patient safety problems from being unbefriended in the U.S. healthcare system. Unbefriended patients are exposed to overtreatment, undertreatment, and placement in an inappropriate setting. In addition to these physical risks, they are likely to receive healthcare discordant with their values and preferences.

The best way to avoid these risks is to avoid becoming unbefriended in the first place. So, in Sections IV and V, I examine key means of prevention. Section IV mechanisms can be employed by clinicians without legal change: (1) vigilant and ultra-careful capacity assessment, (2) more advance care planning, and (3) diligent searching for surrogates. Section V mechanisms require legislation to authorize longer or more flexible default surrogate lists. If more people are authorized to make healthcare decisions, it is less likely the patient will be unbefriended.

Unfortunately, prevention is not always successful. Some patients are “unavoidably” unbefriended. In Section VI, I describe the main officially available solution: guardianship. But guardianship is rarely the right solution. First, there is a broad consensus that guardianship should be only a last resort. Second, the process is too slow and cumbersome to be responsive to the patient’s medical needs.

Consequently, both legislatures and individual health systems or facilities have developed other more accessible mechanisms on their own. But these mechanisms vary in how they balance speed and fairness. In Section VII, I examine mechanisms that lack adequate due process. These include having the healthcare decision authorized: (1) by the attending physician herself, (2) by a second physician, or (3) by an “interdisciplinary team.” Finally, in Section VIII, I describe solutions that are more accessible than guardianship, yet still afford adequate procedural due process. These often include tiered approaches that correlate the amount of oversight to the gravity of the decision at hand. These solutions typically require consent either from the ethics committee or from an external and independent committee.

Ultimately, we must balance speed and fairness. On the one hand, we want a decision-making process that is accessible, quick, convenient, and cost-effective. On the other hand, we want a process that provides the important safeguards of expertise, neutrality, and careful deliberation. This Article offers a comprehensive organization and framing of various models that are specified in law or implemented at the institutional level. My intent is to that this examination will help public and institutional policymakers determine where to best strike the balance.

Keywords: Unbefriended, Unrepresented, Surrogate, Healthcare Proxy, Guardianship, Public Guardian, Adult Orphan, Capacity, Healthcare Decisions, Substitute Decision-Making

JEL Classification: I1, I18, K32, K3