Spirituality in Serious Illness and Health.

Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.

The ethical obligation of the dead donor rule.

The dead donor rule (DDR) originally stated that organ donors must not be killed by and for organ donation. Scholars later added the requirement that vital organs should not be procured before death. Some now argue that the DDR is breached in donation after circulatory determination of death (DCDD) programs. DCDD programs do not breach the original version of the DDR because vital organs are procured only after circulation has ceased permanently as a consequence of withdrawal of life-sustaining therapy. We hold that the original rendition of the DDR banning killing by and for organ donation is the fundamental norm that should be maintained in transplantation ethics. We propose separating the DDR from two other fundamental normative rules: the duties to prevent harm and to obtain informed consent.

Ethics and Evidence.

Towards the end of the last century, bioethics underwent an "empirical turn," characterized by an increasing number of empirical studies about issues of bioethical concern. Taking a cue from the evidence-based medicine movement, some heralded this as a turn toward evidence-based ethics. However, it has never been clear what this means, and the strategies and goals of evidence-based ethics remain ambiguous. In this article, the author explores what the potential aims of this movement might be, ultimately arguing that, while the development of good empirical research can and should aid in ethical deliberation, one ought to avoid assuming or suggesting that empirical studies themselves determine normative prescriptions and proscriptions. The limits of the use of empirical studies in bioethics are explored in detail, and 10 potential ways that such studies can soundly contribute to bioethics are described. Good ethics depends upon sound facts, but ethics cannot be based on evidence alone.

The genealogy of death: A chronology of U.S. organizations promoting euthanasia and assisted suicide.

In the early 20th century, a political movement to secure access to euthanasia and assisted suicide began in the United States. The multitude of organizations associated with this effort has undergone an array of mergers, splits, and name changes, channeled through two progenitor organizations-the Euthanasia Society of America and the Hemlock Society. A few chronologies mapping the metamorphoses of these organizations are available, but they are not accessible in the medical literature. Moreover, they are not comprehensive, lack consistency, and are not rigorously validated. As debates about the legalization of euthanasia and assisted suicide continue, it is important to have a common understanding of the history behind these developments, including recognition of the factors driving these adaptations. In this paper, we offer a comprehensive and definitive history to aid those interested in knowing the roots of these organizations and those that are still active today.

Physician-Assisted Suicide: Why Neutrality by Organized Medicine Is Neither Neutral Nor Appropriate.

It has been proposed that medical organizations adopt neutrality with respect to physician-assisted suicide (PAS), given that the practice is legal in some jurisdictions and that membership is divided. We review developments in end-of-life care and the role of medical organizations with respect to the legalization of PAS since the 1990s. We argue that moving from opposition to neutrality is not ethically neutral, but a substantive shift from prohibited to optional. We argue that medical organizations already oppose many practices that are legal in many jurisdictions, and that unanimity among membership has not been required for any other clinical or ethical policy positions. Moreover, on an issue so central to the meaning of medical professionalism, it seems important for organized medicine to take a stand. We subsequently review the arguments in favor of PAS (arguments from autonomy and mercy, and against the distinction between killing and allowing to die (K/ATD)) and the arguments against legalization (the limits of autonomy, effects on the patient-physician relationship, the meaning of healing, the validity of the K/ATD distinction, the social nature of suicide, the availability of alternatives, the propensity for incremental extension, and the meaning of control). We conclude that organized medicine should continue its opposition to PAS.

Perceptions of control and unrealistic optimism in early-phase cancer trials.

PURPOSE: Recent research has found unrealistic optimism (UO) among patient-subjects in early-phase oncology trials. Our aim was to investigate the cognitive and motivational factors that evoke this bias in this context. We expected perceptions of control to be a strong correlate of unrealistic optimism. METHODS: A study of patient-subjects enrolled in early-phase oncology trials was conducted at two sites in the USA. Respondents completed questionnaires designed to assess unrealistic optimism and several risk attribute variables that have been found to evoke the bias in other contexts. RESULTS: One hundred and seventy-one patient-subjects agreed to be interviewed for our study. Significant levels of perceived controllability were found with respect to all nine research-related questions. Perceptions of control were found to predict unrealistic optimism. Two other risk attribute variables, awareness of indicators (p=0.024) and mental image (p=0.022), were correlated with unrealistic optimism. However, in multivariate regression analysis, awareness and mental image dropped out of the model and perceived controllability was the only factor independently associated with unrealistic optimism (p<0.0001). CONCLUSION: Patient-subjects reported that they can, at least partially, control the benefits they receive from participating in an early-phase oncology trial. This sense of control may underlie unrealistic optimism about benefiting personally from trial participation. Effective interventions to counteract unrealistic optimism may need to address the psychological factors that give rise to distorted risk/benefit processing.

Physician-Assisted Suicide and Euthanasia in the ICU: A Dialogue on Core Ethical Issues.

OBJECTIVE: Many patients are admitted to the ICU at or near the end of their lives. Consequently, the increasingly common debate regarding physician-assisted suicide and euthanasia holds implications for the practice of critical care medicine. The objective of this article is to explore core ethical issues related to physician-assisted suicide and euthanasia from the perspective of healthcare professionals and ethicists on both sides of the debate. SYNTHESIS: We identified four issues highlighting the key areas of ethical tension central to evaluating physician-assisted suicide and euthanasia in medical practice: 1) the benefit or harm of death itself, 2) the relationship between physician-assisted suicide and euthanasia and withholding or withdrawing life support, 3) the morality of a physician deliberately causing death, and 4) the management of conscientious objection related to physician-assisted suicide and euthanasia in the critical care setting. We present areas of common ground and important unresolved differences. CONCLUSIONS: We reached differing positions on the first three core ethical questions and achieved unanimity on how critical care clinicians should manage conscientious objections related to physician-assisted suicide and euthanasia. The alternative positions presented in this article may serve to promote open and informed dialogue within the critical care community.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

OBJECTIVE: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. METHOD: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. RESULTS: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. SIGNIFICANCE OF RESULTS: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Tolerance, Professional Judgment, and the Discretionary Space of the Physician.

Arguments against physicians' claims of a right to refuse to provide tests or treatments to patients based on conscientious objection often depend on two premises that are rarely made explicit. The first is that the protection of religious liberty (broadly construed) should be limited to freedom of worship, assembly, and belief. The second is that because professions are licensed by the state, any citizen who practices a licensed profession is required to provide all the goods and services determined by the profession to fall within the scope of practice of that professional specialty and permitted by the state, regardless of any personal religious, philosophical, or moral objection. In this article, I argue that these premises ought to be rejected, and therefore the arguments that depend on them ought also to be rejected. The first premise is incompatible with Locke's conception of tolerance, which recognizes that fundamental, self-identifying beliefs affect public as well as private acts and deserve a broad measure of tolerance. The second premise unduly (and unrealistically) narrows the discretionary space of professional practice to an extent that undermines the contributions professions ought to be permitted to make to the common good. Tolerance for conscientious objection in the public sphere of professional practice should not be unlimited, however, and the article proposes several commonsense, Lockean limits to tolerance for physician claims of conscientious objection.

Death and dignity in Catholic Christian thought.

This article traces the history of the concept of dignity in Western thought, arguing that it became a formal Catholic theological concept only in the late nineteenth century. Three uses of the word are distinguished: intrinsic, attributed, and inflorescent dignity, of which, it is argued, the intrinsic conception is foundational. The moral norms associated with respect for intrinsic dignity are discussed briefly. The scriptural and theological bases for adopting the concept of dignity as a Christian idea are elucidated. The article concludes by discussing the relevance of this concept of dignity to the spiritual and ethical care of the dying.

Dispositional optimism and therapeutic expectations in early-phase oncology trials.

BACKGROUND: Prior research has identified unrealistic optimism as a bias that might impair informed consent among patient-subjects in early-phase oncology trials. However, optimism is not a unitary construct; it also can be defined as a general disposition, or what is called dispositional optimism. The authors assessed whether dispositional optimism would be related to high expectations for personal therapeutic benefit reported by patient-subjects in these trials but not to the therapeutic misconception. The authors also assessed how dispositional optimism related to unrealistic optimism. METHODS: Patient-subjects completed questionnaires designed to measure expectations for therapeutic benefit, dispositional optimism, unrealistic optimism, and the therapeutic misconception. RESULTS: Dispositional optimism was found to be significantly associated with higher expectations for personal therapeutic benefit (Spearman rank correlation coefficient [r], 0.333; P<.0001), but was not associated with the therapeutic misconception (Spearman r, -0.075; P = .329). Dispositional optimism was found to be weakly associated with unrealistic optimism (Spearman r, 0.215; P = .005). On multivariate analysis, both dispositional optimism (P = .02) and unrealistic optimism (P<.0001) were found to be independently associated with high expectations for personal therapeutic benefit. Unrealistic optimism (P = .0001), but not dispositional optimism, was found to be independently associated with the therapeutic misconception. CONCLUSIONS: High expectations for therapeutic benefit among patient-subjects in early-phase oncology trials should not be assumed to result from misunderstanding of specific information regarding the trials. The data from the current study indicate that these expectations are associated with either a dispositionally positive outlook on life or biased expectations concerning specific aspects of trial participation. Not all manifestations of optimism are the same, and different types of optimism likely have different consequences for informed consent in early-phase oncology research.

Dear Dr. Peabody.

Reading the following brief piece depends on having some knowledge of the famous essay to which it refers, Francis W. Peabody's "The Care of the Patient," published 90 years ago in the Journal of the American Medical Association (JAMA 88: 877-82). Peabody's essay was based on a talk he gave to Harvard medical students in 1925, and it was published shortly before his premature death in 1927. At the time, he was highly regarded as a consummate clinician and teacher, and in his essay, he laments problems he already saw affecting medical practice, such as the overvaluation of science relative to clinical medicine and a diminishing spirit of attentiveness to the most deeply human needs of patients. He deals in an especially astute and compassionate way with the care of patients suffering from what is now known as somatization disorder. Peabody's essay has been widely anthologized, is often an assigned reading for medical students, and has been revered by practitioners and students for almost 100 years. But times are changing . . .

Non-faith-based arguments against physician-assisted suicide and euthanasia.

This article is a complement to "A Template for Non-Religious-Based Discussions Against Euthanasia" by Melissa Harintho, Nathaniel Bloodworth, and E. Wesley Ely which appeared in the February 2015 Linacre Quarterly. Herein we build upon Daniel Sulmasy's opening and closing arguments from the 2014 Intelligence Squared debate on legalizing assisted suicide, supplemented by other non-faith-based arguments and thoughts, providing four nontheistic arguments against physician-assisted suicide and euthanasia: (1) "it offends me"; (2) slippery slope; (3) "pain can be alleviated"; (4) physician integrity and patient trust. Lay Summary: Presented here are four non-religious, reasonable arguments against physician-assisted suicide and euthanasia: (1) "it offends me," suicide devalues human life; (2) slippery slope, the limits on euthanasia gradually erode; (3) "pain can be alleviated," palliative care and modern therapeutics more and more adequately manage pain; (4) physician integrity and patient trust, participating in suicide violates the integrity of the physician and undermines the trust patients place in physicians to heal and not to harm.

Naked bodies, naked genomes: the special (but not exceptional) nature of genomic information.

Genetic exceptionalism, the view that genomic information is different from other types of sensitive information and deserves exceptional types of protections, has been roundly criticized. However, the public still expresses special fears about the access others might have to their genomic information. In this article, it is argued that there may be a basis for the public perception that genomic information is special, even if it cannot be said that policies could or should be enacted to protect the privacy and confidentiality of genomic information that would be exceptional relative to the protections one would enact to protect other types of sensitive information. The special nature of genomic information lies in understanding that it is neither personal property nor mere information. A genome is, at one and the same time, a physical aspect of a person and information about that person. Genomic data are embodied information that partially constitutes as well as describes individuals and that connects them in physical ways to their ancestors and their relatives. All forms of privacy need to be protected, but some intimate aspects of our lives command special respect. To see a genome is more analogous to seeing a naked body than to seeing a social security number. This metaphor suggests that clinicians and investigators ought to respect the special concerns of patients regarding genomic information while not claiming that there are any exceptional measures one could take to protect genomic privacy. Suggestions are given for how this view might affect patient interactions, consent discussions, public policy, and public trust in genomic research and clinical genetics.