Law and Ethics in Oncology explores the legal and ethical issues oncologists must be aware of in this era of precision medicine and changing health-care policy, both to protect patients’ rights and to safeguard against potential legal jeopardy.
Increasingly, across the United States, hospitals are seeing more and more “unrepresented” patients. These patients are sometimes called “unbefriended,” “solo seniors,” or “adult orphans.” They lack decision-making capacity. They also lack any health-care agent, guardian, family member, or other authorized surrogate decision-maker. In short, the unrepresented patient cannot consent to his or her own treatment, and there is no one else available who can consent on the patient’s behalf.1
Thaddeus Mason Pope, JD, PhD
Approximately 40% of hospitalized patients lack decision-making capacity due to cognitive impairment.2,3 Moreover, this percentage will likely increase both as the population ages and the prevalence of dementia increases. This problem affects oncologists, because many of these incapacitated patients need curative or palliative cancer treatment.4 For most of these patients, physicians can work with their surrogates to determine an appropriate course of care.5 However, a growing subset of unrepresented patients has no available surrogates.
With respect to these patients, oncologists are asking, “May we provide cancer therapy without consent?6 The answer is yes—sometimes. Physicians may administer cancer therapy without consent under some circumstances. Yet this is always a last resort option, used only after clinicians have exhausted the possibility of obtaining treatment consent.
Ensuring a Patient Is Truly Unrepresented
BEFORE TREATING a patient without consent, first ensure he or she is really unrepresented. Answer these two threshold questions: Is the patient really incapacitated? Does the patient really lack an available surrogate?
Although the patient may appear incapacitated, it may not be a permanent or immutable status. First, capacity is decision-specific. Even if the patient lacks the capacity to make complex treatment decisions, he or she may still have the capacity to appoint a surrogate. Second, capacity may fluctuate. For example, while the patient may not have capacity in the afternoon, he or she may have capacity in the morning. Third, even if the patient lacks capacity, there may be ways to restore it. For example, if the cause for confusion is alcohol, detoxification can enhance capacity.7
The bottom line is: The patient should participate in his or her own medical treatment to the extent possible.
“Approximately 40% of hospitalized patients lack decision-making capacity due to cognitive impairment. This percentage will likely increase both as the population ages and the prevalence of dementia increases.”— Thaddeus Mason Pope, JD, PhD
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Using Alternative Surrogates
ONCE YOU have confirmed the patient is incapacitated, similarly confirm the patient really lacks an available surrogate. Often, once your facility’s social workers conduct a diligent and rigorous search, they may find a family member or close friend who is available and willing to serve as the patient’s surrogate. Since this person both knows and cares for the patient, he or she is the preferred decision-maker.8
If there is no available patient surrogate, a handful of states have statutes that authorize certain facility-based mechanisms. For example, in Florida, if no surrogate is available, an independent clinical social worker appointed by the facility’s ethics committee may make treatment decisions for the patient.9 In Arizona, the attending physician may make decisions with the agreement of the ethics committee or a second physician.10 Still, these states are the exception.11
All states have guardianship or conservatorship procedures. But they are widely considered too slow and cumbersome for medical decision-making. Yet, apart from court appointment, most states provide no official guidance as to who may make treatment decisions for unrepresented patients. Yet even these states provide some guidance on the standards on which to make these decisions. No matter who makes the treatment decision, the decision-maker must base the decision on substituted judgment to the fullest extent possible. If the patient’s specific values and wishes are unknown, the decision-maker must base the decision on the patient’s best interests.
“When making treatment decisions for unrepresented patients, the required amount of review and oversight correlates to the gravity of the decision at hand.”— Thaddeus Mason Pope, JD, PhD
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Determining the Level of Treatment Affects Consent
WHO MAY make treatment decisions for unrepresented patients in the majority of states that provide no guidance? To begin, when making treatment decisions for unrepresented patients, the required amount of review and oversight correlates to the gravity of the decision at hand. If the proposed procedure is low risk and within broadly accepted standards of medical practice, the attending physician may provide the treatment without consent. Examples of such procedures include the administration of most drugs and vaccines or the performance of minor procedures, such as routine x-rays. Both the Veterans Health Administration and all the most recently enacted state statutes take this approach.12-14
In contrast, more procedural due process is required if the proposed treatment for the unrepresented patient is more consequential. Examples of such procedures include those that are reasonably expected to produce significant pain or discomfort to the patient; produce pain or discomfort to the patient that is substantial enough to require sedation, anesthesia, or narcotic analgesia; or reasonably considered to have a significant risk of complication or morbidity. For example, the administration of chemotherapy drugs would require a more careful review.14
Using a Multidisciplinary Process With Diverse Input
MANY HEALTH-CARE facilities give sole authority to individual physicians to administer treatment.15,16 Yet this common approach is problematic because of well-documented variability between clinicians’ treatment decisions and risks from bias and conflicts of interest. Moreover, removing the need for physicians to justify or explain their treatment recommendations may create a disincentive to think them through carefully.
Although entrusting decision-making to a single individual may be efficient, the advantage it poses must be weighed against the plurality of views represented in a larger medical committee. Institutional mechanisms are preferable to ad hoc strategies by clinicians. Institutional mechanisms can promote key elements of procedural fairness, including transparency, legitimacy, consistency, and the opportunity for appeal and review.
To ensure logistic feasibility, institutions should have flexibility in how to form a multidisciplinary committee to solve the issue of unrepresented patients. Generally, such a committee should include three to five members, including a physician and a nurse, and one other who is neither. Whenever possible, include representation from social work, the ethics committee, and the local community. The committee should not include members of the primary treatment team.
UNREPRESENTED PATIENTS are particularly vulnerable. Consequently, clinicians should carefully evaluate treatment decisions on their behalf.
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
DISCLOSURE: Dr. Pope reported no conflicts of interest.
1. Pope TM: Unbefriended and unrepresented: Better medical decision making for incapacitated patients without healthcare surrogates. Georgia State U Law Rev 33:923-1019, 2017.
2. Raymont V, Bingley W, Buchanan A, et al: Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study. Lancet 364:1421-1427, 2004.
3. Torke AM, Sachs GA, Helft PR, et al: Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med 174:370-377, 2014.
4. Bandy RJ, Helft PR, Bandy RW, et al: Medical decision-making during the guardianship process for incapacitated, hospitalized adults. J Gen Intern Med 25:1003-1008, 2010.
5. Pope TM: Legal fundamentals of surrogate decision-making. Chest 14:1074-1081, 2012.
6. Helft PR: Treatment without consent? Oncology (Williston Park) 29:71-72, 2015.
7. Moye J, Catlin C, Kwak J, et al: Ethical concerns and procedural pathways for patients who are incapacitated and alone: Implications from a qualitative study for advancing ethical practice. HEC Forum 29:171-189, 2017.
8. Farrell TW, Widera E, Rosenberg L, et al: AGS position statement: Making medical treatment decisions for unbefriended older adults. J Am Geriatr Soc. November 22, 2016 (early release online).
11. Pope TM: Making medical decisions for patients without surrogates. N Engl J Med 369:1976-1978, 2013.
15. White DB, Jonsen A, Lo B: Ethical challenge: When clinicians act as surrogates for unrepresented patients. Am J Crit Care 21:202-207, 2012.
16. Isaacs ED, Brody RV: The unbefriended adult patient. San Francisco Med 83:25-26, 2010.