To date no one has identified or described the population of incapacitated patients being treated in an inpatient setting who lack proxy decision-makers. Nor, despite repeated calls for protocols to be developed for decision-making, has any institution reported on the utilization of such a protocol. In 2005, our urban tertiary care hospital instituted a protocol utilizing community members of the ethics committee to meet with the medical providers and engage in shared decision-making for patients without proxies. We (...) conducted a retrospective chart review and in this paper describe nearly 200 patients who were identified and treated according to the protocol over a 12 year period. After an aggressive search, family members were located for a surprising number of patients, leaving 80 patients who needed decisions to be made utilizing the PWP committee. We review the decisions required, the results of the shared decision-making meetings, and the patient outcomes. Our experience has shown that a protocol involving community volunteers to make decisions for PWPs in a timely manner is feasible and ethically defensible. The protocol has been accepted by physicians and utilized with increasing frequency. Because it was possible to gather at least minimal information on most patients, a standard of “informed best interest” was used to make decisions. PWP committee recommendations varied, but in all cases agreement was reached with the attending physicians. (shrink)

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for (...) making treatment decisions for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

In the present super-aging society, issues concerning what treatment should be given for incapacitated patients have become more important than ever before. This paper discusses whether or not an incapacitated patient’s refusal of treatment should be respected. The authors present a complete hypothetical scenario involving a 75-year-old moderately demented man suffering from malignant lymphoma. Of primary importance are the respect for patient dignity and the protection of human rights. Acts such as coercion, disregard, restriction, and surveillance can (...) be unethical in many situations. The effectiveness of chemotherapy for malignant lymphoma and its adverse outcomes could offset each other, leaving no net benefits for the patient. The patient is vulnerable and this very vulnerability requires the utmost protection and care. However, protection must be sensitive and comprehensive and the protection of his life at the expense of many other valuable factors is not justifiable. Coercing unwanted treatment would be intrusion, not protection, because of the physical and psychological suffering. When the refusal is explicit, consistent, and stable enough, it should to be viewed as true and current desire. Due to moderate dementia, the patient has lost his rational capacity, but his emotional capacity remains. If the remaining portion of his personality is rooted in his feelings, these feelings should be respected as much as possible. Those involved in the care of the patients who refuse treatment should not force them to undergo it simply on the grounds that it may be an established standard in their own country. What must be asked first is whether or not forced treatment would promote the patient’s subjective well-being. Additionally, treatment decisions should not be distorted due to the selfishness or discriminatory feelings of those involved in his care. In situations in which patients lack decisionmaking capacities, overriding the patients’ refusals of treatment should be regarded as an exception, rather than a standard course of action. Even in patients who are incapacitated, treatment refusal could stem from the feelings of the individual. Their subjective wellbeing would not be improved through close observation, restraint, denial, and coercion, the purpose of which they does not understand. (shrink)

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the (...) hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population. (shrink)

Founded upon the primacy of the principle of respect for autonomy, three methods of surrogate decision making traditionally have been promoted to help the family and friends of incapacitated patients. Unfortunately, the standards of advance directives, substituted judgment, and best interests are often inadequate in practice. Studies report that few patients have formal, written advance directives; that patients often change their minds about treatment over time; that many patients are simply not ready or willing to (...) plan ahead—in part, because some patients and families simply don’t believe in autonomy; that those patients who do plan ahead often do not communicate their plans; and that while some patients want their directives followed strictly, many prefer that their surrogates use judgment in making decisions. After reviewing articles describing a variety of alternative approaches, a new clinical standard of surrogate empowerment is proposed to reconcile and integrate these observations and concepts. The “procedure” for this clinical standard is presented. (shrink)

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the (...) patient’s preferred treatment option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

In the early days of ethics consultation, two pioneer consultants noted that one of their important functions was to gather missing information and correct misinformation relevant to the facts of t...

This case is about a study of burn patients that included a request to the IRB for a waiver of consent for perianal specimen collection–a request which ultimately was not approved by a reviewing IR...

When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision‐making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in making medical treatment (...) decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.I contend that we should not reassign the BIS’s limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS. (shrink)

The administration of pro re nata medications is the responsibility of the nurse. However, ethical uncertainties often happen due to the inability of incapacitated patients to collaborate with the nurse in the process of decision making for pro re nata medication administration. There is a lack of integrative knowledge and insufficient understanding regarding ethical considerations surrounding the administration of pro re nata medications to incapacitated patients. Therefore, they have been discussed in this paper and practical strategies (...) to avoid unethical practices have been suggested. The complicated caring situation surrounding the administration of pro re nata medications is intertwined with ethical issues affecting the consideration of the patient's wishes and interventions that override them. The patient's right of autonomy and treatment refusal, surrogacy role, paternalism, and coercion are the main ethos of ethical pro re nata medication administration. Education and training can help nurses avoid legal and ethical issues in pro re nata medicines management and improve the quality and safety of healthcare. Empirical research is needed to improve our understanding of this phenomenon in the multidisciplinary environment of medicines management. (shrink)

In this issue of the Hastings Center Report, Jason Wasserman and Mark Navin argue that patients without decisional capacity can still have relatively stable wishes or inclinations toward one treatment option over another and that these preferences are “not devoid of moral weight and might therefore guide or at least influence treatment decisions when they cannot be defeated by other considerations.” This position is not controversial among most bioethicists. The hard work comes in sussing out the details of this (...) position. How much moral weight do these preferences have? When should preferences be defeated by other considerations? How should we identify actual preferences, and how should preferences be differentiated and weighed against one another? (shrink)

In NX v. Cabrini Medical Center, New York's highest court overruled a divided Appellate Division and held that, as a matter of law, a jury could find a hospital negligent for its failure to protect a patient from sexual assault. The court refused, however, to adopt a higher standard of tort liability for health-care providers who treat incapacitated patients.

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.This last point—the newly visible moral richness of intimate relationship—provides this paper with (...) its field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies. (shrink)

Sexual assault cases are challenging for both the patient and provider, particularly given the emotional and logistic overlays in the majority of these cases. In this article we offer sexual assault programs information and areas for consideration when developing a policy addressing sexual assault examinations on patients who are either incapacitated or otherwise unable to consent to examination. This information is based on our experience in creating and implementing such a policy for our program. We also offer the (...) written policy and associated consent form that we designed.The protocol manual for sexual assault medical forensic examinations authored by the Department of Justice actually recommends that each and every sexual assault nurse examiner program have “internal policies based on applicable jurisdictional statutes governing consent for treatment of vulnerable adult patients. In cases of adolescents, the jurisdictional statutes governing consent and access to the exam should be followed.“. (shrink)

In the United States, patients who lose the ability to make their own medical decisions are subject to the laws of their respective states. Laws governing advance directives and physician orders for life-sustaining therapies (POLST), and establishing a surrogate in the absence of an advance directive, vary substantially by jurisdiction. This article traces those laws from their origins, describes current practices and challenges with their application to patient care, and considers future avenues for ethics research and legislative reform.

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.This last point—the newly visible moral richness of intimate relationship—provides this paper with (...) its field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies. (shrink)

Sexual assault examinations consist of a medical evaluation and forensic evidence collection. Usually the patient signs a consent form allowing the examination to occur. Occasionally circumstances exist that render a patient unable to give consent for this examination. Such circumstances include young age, mental health disease, cognitive delay, or drug/alcohol ingestion. This article provides suggestions for developing a policy allowing a sexual assault examination to be conducted without patient consent. A sample of such a policy is provided.

Incapacitated and surrogateless patients are an ever-growing trend in the world of health care. Although the extent of the issue is unknown, 1 out 20 deaths in the intensive care unit (ICU) occurre...

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this essay, we (...) discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Adults who are incapacitated and alone, having no surrogates, may be known as “unbefriended.” Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for “public guardianship” or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the (...) consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: work to restore capacity; find previously unknown surrogates; work with agencies to obtain surrogates; and access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient’s values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population. (shrink)

Adults who are incapacitated and alone, having no surrogates, may be known as “unbefriended.” Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for “public guardianship” or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the (...) consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: work to restore capacity; find previously unknown surrogates; work with agencies to obtain surrogates; and access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient’s values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. (...) The conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means (...) to help make treatment decisions for decisionally-incapacitated patients. -/- Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n=26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. -/- Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. -/- Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it. (shrink)

A power of attorney for healthcare (POAHC) form gives designated individuals legal status to make healthcare decisions when patients are unable to convey their decisions to medical staff. Completion of a POAHC form is crucial in the provision of comprehensive healthcare, since it helps to ensure that patients’ interests, values, and preferences are represented in decisions about their medical treatment. Because increasing numbers of people suffer from debilitating illness and cognitive deficits, healthcare systems may be called upon to (...) navigate the complexities of patients’ care without clear directives from the patients themselves. Hence, the healthcare industry encourages all individuals to complete a POAHC form to ensure that persons who have the patients’ trust are able to act as their surrogate decision makers. However, sometimes POAHC agents, even when they are patients’ trusted agents, lack the capacity to make fully informed decisions that are in the patients’ best interests. We describe designated surrogate decision makers who have impaired or diminished judgment capacity as incapacitated surrogates. Decision making that is obviously flawed or questionable is a significant impediment to providing timely and appropriate care to patients. Moreover, failure to redress these issues in a timely and efficient manner can result in significant costs to an institution and a diminished quality of patient care. The authors offer a legal, ethical, and interdisciplinary framework to help navigate cases of incapacitated surrogates. (shrink)

The Patient Preference Predictor (PPP) proposal places a high priority on the accuracy of predicting patients’ preferences and finds the performance of surrogates inadequate. However, the quest to develop a highly accurate, individualized statistical model has significant obstacles. First, it will be impossible to validate the PPP beyond the limit imposed by 60%–80% reliability of people’s preferences for future medical decisions—a figure no better than the known average accuracy of surrogates. Second, evidence supports the view that a sizable minority (...) of persons may not even have preferences to predict. Third, many, perhaps most, people express their autonomy just as much by entrusting their loved ones to exercise their judgment than by desiring to specifically control future decisions. Surrogate decision making faces none of these issues and, in fact, it may be more efficient, accurate, and authoritative than is commonly assumed. (shrink)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that (...) even if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

In this paper, I set out two ethical complications for Rid and Wendler’s proposal that a “Patient Preference Predictor” (PPP) should be used to aid decision making about incapacitated patients’ care. Both of these worries concern how a PPP might categorize patients. In the first section of the paper, I set out some general considerations about the “ethics of apt categorization” within stratified medicine and show how these challenge certain PPPs. In the second section, I argue for (...) a more specific—but more contentious—claim that proper respect for the autonomy of incapacitated patients might require us to act on reasons which they could endorse and show how this claim places important limits on the categories employed by an ethically acceptable PPP. The conclusion shows how these concerns about apt categorization relate to more familiar worries about Rid and Wendler’s proposals. (shrink)

Two papers in this issue address the limits of surrogates’ authority when making life-and-death decisions for dying family members or friends. Using palliative sedation as an example, Jeffrey Berger offers a conceptual argument for bounding surrogate authority. Since freedom from pain is an essential interest, when imminently dying, cognitively incapacitated patients are in duress and their symptoms are not manageable in any other way, clinicians should be free to offer palliative sedation without surrogate consent, although assent should be (...) sought and every effort made to work with surrogates as harmoniously as possible. Ellen Robinson and her colleagues report on the implementation of a policy at Massachusetts General Hospital that supports do-not-resuscitate orders when cardiopulmonary resuscitation is likely to be ineffective or harmful, even if surrogates disagree. The “Doing No Harm” policy at MGH allows for what MGH calls a “medically indicated DNR” and what in some other places is called “a unilateral DNR”—the writing of an order not to provide cardiopulmonary resuscitation, regardless of surrogate disapproval. These kinds of DNR policies have emerged in some hospitals across the country and for much the same reason that Berger provides in his argument regarding palliative sedation. I support the reasoning and the policies in both the Berger and Robinson papers. However, as the authors would most likely agree, the problems they aim to remedy are not simply about the scope of surrogate and professional authority. They are also symptoms of inattention to professional obligations and system failures. (shrink)

Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the patient's best interests.

Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the patient's best interests.

Patient preference predictors aim to solve the moral problem of making treatment decisions on behalf of incapacitated patients. This commentary on a case of an unrepresented patient at the end of life considers 3 related problems of such predictors: the problem of restricting the scope of inputs to the models (the “scope” problem), the problem of weighing inputs against one another (the “weight” problem), and the problem of multiple reasonable solutions to the scope and weight problems (the “multiple (...) reasonable models” problem). Each of these problems poses challenges to reliably implementing patient preference predictors in important, high-stakes health care decision making. This commentary also suggests a way forward. (shrink)

Prisoners are legally categorized as a vulnerable group for the purposes of medical research, but their vulnerability is not limited to the research context. Prisoner-patients may experience lower standards of care, fewer options for treatment, violations of privacy, and the use of inappropriate surrogates as a result of their status. This case study highlights some of the ways in which a prisoner-patient’s vulnerable status impacted the care he received. The article argues the following: (1) Prisoner-patients are entitled to (...) the same quality of care as all other patients, and healthcare providers should be vigilant to ensure that the stigma of incarceration does not influence care decisions. (2) Options for treatment should reflect what is most medically appropriate in the hospital or other healthcare setting, even when not all treatments would be available in the correctional setting. (3) The presence of guards at the bedside requires that additional measures be taken to protect the privacy and confidentiality of prisoner-patients. (4) When endof-life decisions must be made for an incapacitated patient, prison physicians are not well placed to act as surrogate decision makers, which heightens the obligations of the healthcare professionals in the hospital to ensure an ethically supportable process and outcome. Therefore, healthcare professionals should provide extra protection for those prisoner-patients who do not have decision-making capacity, by utilizing a robust process for decision making such as those used for incapacitated patients without surrogates, rather than relying solely on prison physicians as surrogates. (shrink)

Emergency care research sometimes involves incapacitated adults as research participants. The ethical principle of respect for autonomy may not necessarily apply to an incapacitated person unable to act in an autonomous manner, although it can be argued that researchers still have a duty of respect towards such people because they have moral status despite being incapacitated. Sharing some common ground with theories of moral status based on ‘humanness’ and the ability for rational thought is the notion of (...) human dignity, which features in arguments regarding researcher conduct with incapacitated patients. However, human dignity premised upon the unique ability of humans for rational thought and moral self-regulation is contingent upon these capabilities – a limitation that possibly makes dignity a less useful framework for research conduct in emergency care research. In this article, I will discuss the different conceptions of human dignity – as equality, status and virtue – and then draw on more recent literature that explains human dignity as a social constraint and as a factor influencing the conduct of healthcare professionals and researchers. I will address questions of whether dignity as a principle ought to apply only to those who have the ability to think rationally, or to all humans regardless of their condition or mental status. I will argue that, in relation to offering protection to research participants in emergency conditions, it is immaterial which view is taken. (shrink)

Patient preference predictors take us from known demographic descriptors to unknown facts about patients’ preferences over treatment options. However, the use of PPPs to make treatment decisions on behalf of incapacitated patients faces an apparent normative problem: their use in certain contexts appears to involve treating patients paternalistically. In this paper, I consider whether PPPs can find a home in the context of military medicine. On the assumptions that military organizations sometimes permissibly treat their members paternalistically, (...) I identify the specific circumstances in which PPPs can play a role in making treatment decisions on behalf of patients. I show that these circumstances are not only the natural home of PPPs, PPPs – or something very much like them – are precisely the sort of device required for it to be permissible to paternalistically override a patient’s expressed preferences. (shrink)

Both law and medicine rely on self-regulation and codes of professionalism to ensure duties are performed in a competent, ethical manner. Unlike physicians, however, judges are lawyers themselves, so judicial oversight is also self-regulation. As previous literature has highlighted, the hesitation to report a cognitively-compromised judge has resulted in an “opensecret” amongst lawyers who face numerous conflicts of interest.Through a case study involving a senior judge with severe cognitive impairment, this article considers the unique ethical dilemmas that cognitive specialists may (...) encounter when navigating duties to patient, society, and the medical profession, without clear legal guidance.Systemic self-regulatory inadequacies in the legal profession are addressed, as well as challenges that arise when trying to preserve the trust and dignity of an incapacitated patient who must fulfill special duties to society.Ultimately, because of their unique neurological expertise and impartial assessments, we submit that allowing cognitive specialists to submit their assessments to an internal judiciary board may act as an additional check and balance to ensure the fair and competent administration of justice. (shrink)

Although treating the elderly occasion the same kinds of ethical issues as treating other patients, specific problems do arise when making decisions for persons, once competent, who no longer can express their values. I examine the problem of decisional incapacity and offer a critique of the principles, such as substituted judgment, and the instruments, such as advance directives, living wills, other instructional directives, as well as surrogate decision-makers.

The Patient Preference Predictor (PPP) is intended to improve treatment decision making for incapacitated patients. The PPP would collect information about the treatment preferences of people with different demographic and other characteristics. It could be used to indicate which treatment option an individual patient would be most likely to prefer, based on data about the preferences of people who resemble the patient. The PPP could be incorporated into existing US law governing treatment for incapacitated patients, although (...) it is unclear whether it would be classified as evidence of a specific patient’s preferences or those of a reasonable person sharing certain characteristics with the patient. Ethical concerns about the quality and significance of PPP choices could influence legal decision makers’ views of the PPP. (shrink)

The question of how to treat an incapacitated patient is vexed, both normatively and practically—normatively, because it is not obvious what the relevant objectives are; practically, because even once the relevant objectives are set, it is often difficult to determine which treatment option is best given those objectives. But despite these complications, here is one consideration that is clearly relevant: what a patient prefers. And so any device that could reliably identify a patient’s preferences would be a promising tool (...) for guiding the treatment of incapacitated patients. The patient preference predictor is just such a tool—an algorithm that takes as inputs a patient’s sociodemographic characteristics, and outputs a reliable prediction about that patient’s treatment preferences.1 But some have worried that the use of such a tool would violate or fail to appropriately respect patients’ autonomy. There are, I think, two ways to understand this kind of criticism. First, globally—as a worry that any systematic implementation of the PPP would be problematic on the grounds that it would result in significant or pervasive autonomy violations. Second, locally—as a worry that in some important range of cases, certain uses of the PPP would be problematic on autonomy grounds. Jardas et al, as I read them, address global autonomy-based criticisms, arguing—convincingly, in my view—that there’s no reason to suspect the autonomy concerns raised by the PPP would be so significant and pervasive as to render any implementation of it generally problematic.1 But even with the global criticisms rebuffed, there remains work to be done. Any ethically acceptable implementation of the PPP must be sensitive to the more local autonomy-based criticisms, with restrictions and safeguards in place to ensure respect for autonomy in the kinds of cases in which the use of the PPP might otherwise threaten …. (shrink)

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a (...) multidimensional and continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making. (shrink)

An ethical conflict arises when we must perform research in the interest of future patients, but that this may occasionally injure the interests of today''s patients. In the case of cognitively impaired persons, the question arises whether it is compatible with humane healthcare not only to treat, but also to use these patients for research purposes. Some bioethicists and theologians have formulated a general duty of solidarity, also pertaining to cognitively impaired persons, as a justification for research (...) on these persons. If one examines this thesis from the theory of justice according to John Rawls, it is revealed that such a duty of solidarity cannot necessarily be extrapolated from Rawls' conception of justice. This is at least true of Rawls' difference principle, because accordingto the difference principle only those measures are justifiable which serve the interest of the respective least well off. Those measures which would engender additional injury for the least well off could not be balanced by any utility according to Rawls. However, John Rawls' difference principle is subordinate to the first principle, which is that each person has an equal right to the most extensive basic liberty compatible with the same liberty for others. These primary goods are determined by the freedom and integrity of the person. This integrity of decisionally impaired persons would be in danger if one would abstain from research and thus forego the increase in knowledge related to their disease. Thus one could conclude, at least from Rawls' first principle, that society must take on a duty to guarantee the degrees of freedom for cognitively impaired persons and thus also support the efforts for their healing. (shrink)

The patient preference predictor is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them (...) with the treatments they would have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice. There are no data in this work. (shrink)

This case analysis examines questions that arise when an ethically appropriate recommendation initially appears to be in conflict with the legally appropriate recommendation. The case involves a dying, incapacitated octogenarian who had friends who were willing to share her values, but not to make decisions on her behalf. These circumstances put the patient in the unique position of being legally considered a “patient alone,” but who was ethically like a patient with surrogates—distinctions that are crucial when making end-of-life decisions (...) under the New York Family Health Care Decisions Act. A strict interpretation of the law initially seemed to be in conflict with an ethically appropriate outcome. By gaining a deeper understanding of the patient from those who cared about her, however, and by considering a broader interpretation of the law, an outcome was reached that worked within the framework of the law and honored the patient’s reported values. (shrink)