“Unbefriended,” or “unrepresented,” patients are those who are unable to make their own decisions with regard to their medical care and lack an available surrogate decision maker. As we discuss in this Chapter, many terms have been used to refer to this heterogeneous group, although none fully encompass the breadth of clinical scenarios that present in critical illness; we use “unbefriended patient” for consistency. This unfortunate situation may occur because the person is truly without close contacts or those contacts are unable to be contacted to make these critical decisions on behalf of the patient. Patients without available surrogates but with clearly documented goals of care have variably been included or excluded from this cohort. Although these scenarios may, at first glance, seem to be at the edges of the management spectrum, they are not uncommon. In two studies, 16% of patients who were admitted to the intensive care unit (ICU) and 5.5% of patients who died in the ICU were without surrogates.1,2 The care of these individuals strains the legal, ethical, and practical limits of our work and must be explored by both individual physicians and their institutions.
“Unbefriended,” or “unrepresented,” patients are those who are unable to make their own decisions with regard to their medical care and lack an available surrogate decision maker. As we discuss in this Chapter, many terms have been used to refer to this heterogeneous group, although none fully encompass the breadth of clinical scenarios that present in critical illness; we use “unbefriended patient” for consistency. This unfortunate situation may occur because the person is truly without close contacts or those contacts are unable to be contacted to make these critical decisions on behalf of the patient. Patients without available surrogates but with clearly documented goals of care have variably been included or excluded from this cohort. Although these scenarios may, at first glance, seem to be at the edges of the management spectrum, they are not uncommon. In two studies, 16% of patients who were admitted to the intensive care unit (ICU) and 5.5% of patients who died in the ICU were without surrogates.1, 2 The care of these individuals strains the legal, ethical, and practical limits of our work and must be explored by both individual physicians and their institutions.
17.1 Complications for the Unbefriended Patient
Unbefriended patients are a vulnerable group and are often members of underrepresented and disabled communities.3 Autonomy is one of the central principles of medical ethics, and without clear representation or knowledge of a patient’s goals, the direction of care cannot accurately reflect their wishes. Therapy may not only lack respect to individualized goals but are also often biased away from palliative care. Patients lacking surrogates have fewer palliative care consults, chaplain visits, and do-not-resuscitate orders than represented patients.4 They are also found to have longer stays in the ICU than represented patients, but without any conferred improvement in mortality.1 These factors are a reflection of the various complications presented in the care of the unbefriended patient.
Guidelines from state law, medical administration, and specialty associations are varied and lacking. Providers themselves are often worried about future reprisals or legal culpability when considering palliative approaches to these patients.5 The lack of a clear surrogate can also produce practical challenges to enrollment in hospice and the attainment of services.
17.2 Guidelines and Resources
United States law values autonomy highly, particularly in relation to end-of-life decision-making. The law is generally designed to respect autonomy and provide for its maintenance in cases where patients have lost the capacity to inform their own care. Its very nature is why patient-designated surrogates, such as individuals with a written power of attorney, are the most highly respected in the order of surrogacy. When wishes are documented, but no surrogate is available to help in their interpretation, the physician may, theoretically, interpret and follow its instruction. However, the guidance provided by these forms is rarely so specifically written or easy to apply in any individual patient’s particular case.6 As such, documented instructions for goals of care are important tools for patient surrogates, but not a substitute for the surrogate altogether.
This situation presents a lacune in the law for unbefriended patients. Some states make allowances, including a law enacted in 2011 by Oregon, that enable hospitals to appoint “a health care provider who has received training in health care ethics” as the patient’s surrogate.7 Other states require the designation of a court-appointed guardian, which is often a time-consuming and cumbersome process.8 Overall, at least six different models exist surrounding the care of the unbefriended patient in the 13 states with clearly defined laws on the subject.9 Despite the heterogeneity of state laws on the subject, it is clear that the provider–surrogate dyad is upheld as a vital aspect of autonomy. Simply put, it is presumed that at the very least a representative will be engaged in end-of-life decisions for patients with the treating physician.
The recommendations of professional bodies also demonstrate some heterogeneity. The American Medical Association recommends ethics committee or judicial review, whereas the American College of Physicians recommends only judicial review.10, 11 The American Geriatrics Society (AGS) had advised against routine court involvement, deferring to the individual clinician caring for the patient12; however, in 2016 they revised this position suggesting referral to an external entity, such as an ethics committee “when time allows.”13 This revision cited the need for “adequate safeguards” against “physician bias or conflicts of interest.”
In one study that identified 37 unbefriended patients for whom a physician considered limiting life support, only six underwent internal institutional review, and one received a judicial review. Among the remaining 30 patients, the treating team did not appeal to outside review, although in 16 of these cases they did consult a second attending physician.2 The study enrolled patients across seven different hospitals, two of which did not have institution-specific instructions concerning the management of the unbefriended patient. Within the remaining five facilities, one recommended appointing a hospital advocate, one allowed the attending physician to decide unilaterally, two required the review of an ethics committee, and one requested either a second attending or ethics committee review, depending on the specifics of the case. This study serves to highlight, again, the discord between guidelines and the extent to which they are directly followed.
17.3 Variability among Unbefriended Patients
The many terms used, such as the unbefriended patient, the unrepresented patient, or the adult orphan, conjure the image of a wholly abandoned patient left without any means for guidance in their care. There is, however, considerably more variability found within this population. The unbefriended patient is considered a person who lacks capacity and does not have representation through a surrogate or clear advance directives. Advance directives themselves, even when present, may or may not be clear and directly applicable to a given situation. Carefully documented and attested directions for only comfort directed care would be relatively easy to implement, however, statements such as not wanting to be kept alive if “severely disabled,” although common, are often much harder to interpret. Therefore, patients with advance directives but no designated surrogate are often included among the grouping of unbefriended patients, although clearly with an important, if not independently sufficient, guide to their care.
The unbefriended patient lacks capacity. However, capacity, in its medical sense, is time and question specific.8 Therefore, a patient may have fluctuating capacity, particularly in the ICU setting. Furthermore, a patient may have capacity for some decisions and not others.14 Capacity requires an understanding of the salient features of the decision, the ability to express a choice, an appreciation of the impact of the choice, and reasoning to come to a decision.15 A patient may have the capacity to name a surrogate, but lack the ability to fully understand the impact of a complex surgery or medical intervention. Importantly, when patients do not have the capacity to make a medical decision, they may still be able to report overall desires and goals, such as long-held values toward quantity or quality of life, or, lacking this, express their current experience and level of suffering. This can provide vital guidance for care, without rising to the level of decisional capacity.16
Although some patients may be without identifiable contacts of any sort, others may have friends and family but not formal surrogates for one reason or another. Some contacts may be unwilling to take on the responsibility and burden of making these sorts of decisions for patients, whereas others may have some knowledge or acquaintance with the patient but insufficient to help direct care. Patient contacts may have their own medical or other practical factors limiting their ability to engage in detailed discussion, or they may lack capacity themselves. Clinicians are obligated to assess the capacity of a surrogate much as they would for a patient, although possibly with a more limited knowledge of their current medical state. If a patient contact (or contacts) is discovered who cannot rise to the level of surrogate, the patient may remain technically “unbefriended,” but with a new source of information to assist in the decision-making process.