Health Care System Distrust, Race, and Surrogate Decision-Making Regarding Code Status.

Purpose: Previous studies have shown that black patients are more likely to prefer life-sustaining treatments such as cardiopulmonary resuscitation at end-of-life (EOL) compared to non-Hispanic white patients. Given prior racial disparities in health care, distrust has been proposed to explain these preferences. As many hospitalized older adults require surrogates to make medical decisions, we explored surrogates' code status preferences and the role of trust in these decisions. Methods: We conducted secondary analyses of an observational study of patient/surrogate dyads admitted to three hospitals in a Midwest metropolitan area. Distrust was assessed using the Revised Health Care System Distrust Scale. A single item asked the surrogate which code status they thought was best for the patient, full code or do not resuscitate. Results: We enrolled 350 patient/surrogate dyads (101 black; 249 white). In bivariate analysis, higher proportion of black surrogates preferred full code (62.4% vs. 38.3%, p=0.0001). After adjusting for trust and sociodemographic and psychological covariates, race was still significantly associated with preference for full code (adjusted odds ratio=2.13; 95% confidence interval: 1.16-3.92; p=0.0153). Surrogate race was not associated with distrust in bivariate or multivariable analysis, adjusting for sociodemographic and psychological covariates (p=0.3049). Conclusion: Although black race was associated with preferences for full code status, we observed no association between race and distrust. Differences in code status preference may be due to other factors related to race and culture. To ensure that patients are receiving EOL care that is consistent with their values, more work is needed to understand the cultural complexities behind EOL care preferences.

Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility, Acceptability, and Preliminary Effects.

BACKGROUND: Although religion and spirituality are important to adults with cancer and their family caregivers, few studies have tested spiritual care interventions in the outpatient setting. AIM: To determine the feasibility, acceptability, and preliminary effects of chaplain-delivered, semi-structured spiritual care to adult outpatients with advanced cancer and their caregivers. DESIGN: In this pre/post pilot intervention study, board-certified chaplains utilized the Spiritual Care Assessment and Intervention (SCAI) framework during 4 individual sessions. Surveys at baseline and at 1, 6, and 12 weeks post-intervention assessed spiritual well-being, quality of life, depression, anxiety, and religious coping. SETTING/PARTICIPANTS: We enrolled U.S. adult outpatients with or without an eligible family caregiver. Eligible patients were at least 18 years old and at least 2 weeks post-diagnosis of incurable and advanced-stage lung or gastrointestinal (GI) cancer. RESULTS: Of 82 eligible patients, 24 enrolled (29.3%); of 22 eligible caregivers, 18 enrolled (81.8%). Four planned chaplain visits were completed by 87.5% of patients and 77.8% of caregivers. All enrolled participants completed baseline surveys, and more than 75% completed follow-up surveys at 2 of 3 time points. More than 80% of patients and caregivers reported they would recommend the sessions to a friend or family member. Patients' spiritual well-being improved significantly at all timepoints compared to baseline: 1-week post (p < .006), 6-weeks post (p < .001), and 12-weeks post (p < .004). CONCLUSIONS: Spiritual care through SCAI is feasible, acceptable, and shows promise in improving spiritual well-being and other important outcomes in advanced-stage cancer patients and family caregivers. Further investigation is warranted.

Assessment of Discordance Between Surrogate Care Goals and Medical Treatment Provided to Older Adults With Serious Illness.

Importance: An important aspect of high-quality care is ensuring that treatments are in alignment with patient or surrogate decision-maker goals. Treatment discordant with patient goals has been shown to increase medical costs and prolong end-of-life difficulties. Objectives: To evaluate discordance between surrogate decision-maker goals of care and medical orders and treatments provided to hospitalized, incapacitated older patients. Design, Setting, and Participants: This prospective cohort study included 363 patient-surrogate dyads. Patients were 65 years or older and faced at least 1 major medical decision in the medical and medical intensive care unit services in 3 tertiary care hospitals in an urban Midwestern area. Data were collected from April 27, 2012, through July 10, 2015, and analyzed from October 5, 2018, to December 5, 2019. Main Outcomes and Measures: Each surrogate's preferred goal of care was determined via interview during initial hospitalization and 6 to 8 weeks after discharge. Surrogates were asked to select the goal of care for the patient from 3 options: comfort-focused care, life-sustaining treatment, or an intermediate option. To assess discordance, the preferred goal of care as determined by the surrogate was compared with data from medical record review outlining the medical treatment received during the target hospitalization. Results: A total of 363 dyads consisting of patients (223 women [61.4%]; mean [SD] age, 81.8 [8.3] years) and their surrogates (257 women [70.8%]; mean [SD] age, 58.3 [11.2] years) were included in the analysis. One hundred sixty-nine patients (46.6%) received at least 1 medical treatment discordant from their surrogate's identified goals of care. The most common type of discordance involved full-code orders for patients with a goal of comfort (n = 41) or an intermediate option (n = 93). More frequent in-person contact between surrogate and patient (adjusted odds ratio [AOR], 0.43; 95% CI, 0.23-0.82), patient residence in an institution (AOR, 0.44; 95% CI, 0.23-0.82), and surrogate-rated quality of communication (AOR, 0.98; 95% CI, 0.96-0.99) were associated with lower discordance. Surrogate marital status (AOR for single vs married, 1.92; 95% CI, 1.01-3.66), number of family members involved in decisions (AOR for ≥2 vs 0-1, 1.84; 95% CI, 1.05-3.21), and religious affiliation (AOR for none vs any, 4.87; 95% CI, 1.12-21.09) were associated with higher discordance. Conclusions and Relevance: This study found that discordance between surrogate goals of care and medical treatments for hospitalized, incapacitated patients was common. Communication quality is a modifiable factor associated with discordance that may be an avenue for future interventions.

A Tool to Assess Patient and Surrogate Knowledge About the POLST (Physician Orders for Life-Sustaining Treatment) Program.

CONTEXT: It is especially important that patients are well informed when making high-stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions. OBJECTIVES: To develop a POLST knowledge survey. METHODS: Expert (n = 62) ratings of key POLST facts were used to select items for a POLST knowledge survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess the scale's responsiveness to change. RESULTS: The 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (P < 0.001). Scores for both groups increased significantly after administration of a standardized advance care planning discussion (P < 0.001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (P < 0.001) and being white (P = 0.028) remained significantly associated with higher scores in multivariate analyses. CONCLUSION: The 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST.

Hospital Readmission Penalties: Coming Soon to a Nursing Home Near You!

The Protecting Access to Medicare Act of 2014 includes provisions for hospital readmission penalties for skilled nursing facilities (SNFs) starting in 2018. This presents an opportunity for care improvement but also raises several concerns regarding quality of care. The readmission measure for SNFs is similar to the current readmission measure for hospitals mandated under the Affordable Care Act, with the exception of adjustments made for sex. Because these measures for hospitals are similar, lessons can be learned from implementation of the existing hospital readmission penalties. In addition, there are three specific concerns that the authors relate to implementing the proposed measure in SNFs. There is poor communication and care coordination between care settings, including posthospitalization and post-SNF care in the current healthcare system. Adding readmission penalties to SNF regulations may create perverse incentives for prolonged SNF stays. The evidence base for the best means of caring for individuals after a brief stay in a SNF needs enrichment. These challenges need to be addressed as part of implementation of these new hospital readmission penalties for SNFs to improve care and prevent new unintended consequences.

Geriatric Trauma: A Clinical and Ethical Review.

Because of advances in medicine and other sciences, the average human life span is longer now than any other time in history. The physiologic effects of aging as well as multimorbidity, polypharmacy, and other geriatric-specific syndromes create additional challenges when elderly patients experience a traumatic injury. However, there is a growing evidence base that can inform the clinical decision-making process. This narrative review of the literature addresses the state of the science regarding geriatric syndromes, guidelines and protocols, indices and models for prognostication, outcomes and ethical concerns in the treatment of geriatric trauma.

Wishard Volunteer Advocates Program: an intervention for at-risk, incapacitated, unbefriended adults.

Unbefriended, incapacitated individuals who lack surrogates to make medical decisions present a complex problem to the healthcare providers who treat them. Adults without surrogates are among the most vulnerable in the community and are often alone and estranged from family, neglected and abused, and at risk of receiving inappropriate medical treatment. This article describes the program model and outcomes for the first 2 years of the Wishard Volunteer Advocates Program (WVAP), a guardianship program using trained, supervised volunteers as surrogates for unbefriended, incapacitated individuals. Of the 50 individuals enrolled during the study period, 20 were female, and 39 were Caucasian and 11 African American. Their average age was 67. Nineteen were insured with Medicare as primary and Medicaid as supplementary insurance. Ninety-eight percent had four or more comorbid conditions at the time of the index hospitalization. Before program referral, many lived alone in unsafe conditions. Adult Protective Services was involved in almost half of the cases at the time of the index hospitalization. Approximately half of the participants required some type of property management. Healthcare usage data demonstrated that most were not receiving medical care before WVAP enrollment; the data indicated a decrease in emergency department visits and hospitalization after WVAP enrollment. The WVAP completed Medicaid applications for 12 participants, resulting in $297,481.62 in reimbursement for the index hospitalization and a payer source for subsequent hospitalization and long-term care. The volunteer advocate model provides an efficient and quality mechanism for providing unbefriended individuals with surrogates.

Ethical challenges for accountable care organizations: a structured review.

BACKGROUND: Accountable care organizations (ACOs) are proliferating as a solution to the cost crisis in American health care, and already involve as many as 31 million patients. ACOs hold clinicians, group practices, and in many circumstances hospitals financially accountable for reducing expenditures and improving their patients' health outcomes. The structure of health care affects the ethical issues arising in the practice of medicine; therefore, like all health care organizational structures, ACOs will experience ethical challenges. No framework exists to assist key ACO stakeholders in identifying or managing these challenges. METHODS: We conducted a structured review of the medical ACO literature using qualitative content analysis to inform identification of ethical challenges for ACOs. RESULTS: Our analysis found infrequent discussion of ethics as an explicit concern for ACOs. Nonetheless, we identified nine critical ethical challenges, often described in other terms, for ACO stakeholders. Leaders could face challenges regarding fair resource allocation (e.g., about fairly using ACOs' shared savings), protection of professionals' ethical obligations (especially related to the design of financial incentives), and development of fair decision processes (e.g., ensuring that beneficiary representatives on the ACO board truly represent the ACO's patients). Clinicians could perceive threats to their professional autonomy (e.g., through cost control measures), a sense of dual or conflicted responsibility to their patients and the ACO, or competition with other clinicians. For patients, critical ethical challenges will include protecting their autonomy, ensuring privacy and confidentiality, and effectively engaging them with the ACO. DISCUSSION: ACOs are not inherently more or less "ethical" than other health care payment models, such as fee-for-service or pure capitation. ACOs' nascent development and flexibility in design, however, present a time-sensitive opportunity to ensure their ethical operation, promote their success, and refine their design and implementation by identifying, managing, and conducting research into the ethical issues they might face.

Making decisions for hospitalized older adults: ethical factors considered by family surrogates.

BACKGROUND: Hospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions. OBJECTIVES: To determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards. DESIGN: Semi-structured interview study of the experience and process of decision making. SETTING: A public safety-net hospital and a tertiary referral hospital in a large city in the Midwest United States. PARTICIPANTS: The study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older. MEASUREMENTS: The key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis. RESULTS: Surrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: (1) respecting the patient's input, (2) using past knowledge of the patient to infer the patient's wishes, and (3) considering what is in the patient's best interests. Some surrogates expressed a desire for more information about the patient's prior wishes. Surrogate-centered factors included: (1) surrogate's wishes as a guide, (2) surrogate's religious beliefs and/or spirituality, (3) surrogate's interests, and (4) family consensus. CONCLUSION: Our study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient's autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates' desire for more information about patients' preferences suggests a need for greater advance care planning.

Caregiver perspectives on cancer screening for persons with dementia: "why put them through it?".

OBJECTIVES: To describe the perspectives of family caregivers toward stopping cancer screening tests for their relatives with dementia and identify opportunities to reduce harmful or unnecessary screening. DESIGN: Focus group study. SETTING: Alzheimer's Association support groups for family members of individuals with dementia. PARTICIPANTS: Four focus groups including 32 caregivers (25 female; 24 white, 7 African American, one American/Indian; mean age 65.5, range 49-85). MEASUREMENTS: Focus group transcripts were transcribed and analyzed using methods of grounded theory. RESULTS: Caregivers considered decisions to stop cancer screening in terms of quality of life and burden on the patient and caregiver. Many described having to intervene in the patient's care to stop unnecessary or harmful screening, and others met resistance when they advocated for stopping. Physicians varied widely in their knowledge of dementia care and willingness to consider cessation of screening. CONCLUSION: Many family caregivers wish to stop cancer screening tests as dementia progresses and are relieved when physicians bring it up. Caregivers are open to discussions of screening cessation that focus on quality of life, burdens, and benefits. Interventions are needed to increase caregiver and clinician discussion of screening cessation and to increase clinician awareness of the need to reconsider cancer screening in individuals with dementia.

The physician-surrogate relationship.

The physician-patient relationship is a cornerstone of the medical encounter and has been analyzed extensively. But in many cases, this relationship is altered because patients are unable to make decisions for themselves. In such cases, physicians rely on surrogates, who are often asked to "speak for the patient." This view overlooks the fundamental fact that the surrogate decision maker cannot be just a passive spokesperson for the patient but is also an active agent who develops a complex relationship with the physician. Although there has been much analysis of the ethical guidelines by which surrogates should make decisions, there has been little previous analysis of the special features of the physician-surrogate relationship. Such an analysis seems crucial as the population ages and life-sustaining technologies improve, which is likely to make surrogate decision making even more common. We outline key issues affecting the physician-surrogate relationship and provide guidance for physicians who are making decisions with surrogates.

African American patients' perspectives on medical decision making.

BACKGROUND: The medical literature offers little information about how older African Americans view the medical decision-making process. We sought to describe the perspectives of older African American patients in a primary care clinic as they consider a medical decision. METHODS: We interviewed 25 African American patients older than 50 years who had discussed flexible sigmoidoscopy with their primary care provider. Interviews were analyzed using qualitative methods. RESULTS: Patients listed concerns about cancer and health, risks and benefits, their own understanding of the test, and the recommendation of the provider as the most important factors in their decision. Most patients wanted information about medical tests and procedures to increase their understanding and to provide reassurance rather than to guide decision making. Most patients explained that they wanted the provider to make medical decisions because of his or her training and experience. Despite this, many expressed a sense of ownership or control over one's own body. Patients thought trust was built by a health care provider's honesty, patience, kindness, interest, and continuity of care. CONCLUSIONS: Although traditional models of informed consent have emphasized providing patients with information to guide autonomous decision making, patients may want this information for other reasons. Fully informing patients about their medical condition increases understanding and provides reassurance. Because many of these patients want their provider to participate in making medical decisions, he or she should not only provide information but should also provide guidance to the patient.