Serving the Very Sick, Very Frail, and Very Old: Geriatrics, Palliative Care, and Clinical Ethics.

How can we provide the best care for growing numbers of very frail, very sick, or very old people? The disciplines of geriatrics, palliative care, and clinical ethics each have a good deal to offer to improve care for elders, yet each field is saddled with heavy historical baggage. Using a case as a springboard, we address specific strengths and shortcomings of each field, and what these disciplines can learn from each other. Geriatrics is currently largely focused on prevention of disability, cognitive impairment, and death; it should reorganize around a palliative approach to providing care for elders living with multiple chronic conditions, disability, and dementia. Palliative care, while paying some attention to the spectrum of advanced illness, concentrates primarily on cancer; it should expand its central purpose to include providing supportive care to elders with serious illness and their caregivers. Ethics committee members and consultants principally stress individual autonomy; they need to expand their approach and develop longitudinal relationships with patients and family members, routinely incorporating them in deliberations and the crafting of recommendations. However, improving these three disciplines will only go so far toward improving the care of very frail, very sick, or very old people. What is most needed is longitudinal care provided by interdisciplinary primary care teams steeped in the core principles of all three disciplines.

Factors associated with oncology patients' involvement in shared decision making during chemotherapy.

OBJECTIVE: Oncology patients are increasingly encouraged to play an active role in treatment decision making. While previous studies have evaluated relationships between demographic characteristics and decision-making roles, less is known about the association of symptoms and psychological adjustment characteristics (eg, coping styles and personality traits) and decision-making roles. METHODS: As part of a larger study of symptom clusters, patients (n = 765) receiving chemotherapy for breast, gastrointestinal, gynecological, or lung cancer provided information on demographic, clinical, symptom, and psychological adjustment characteristics. Patient-reported treatment decision-making roles (ie, preferred role and role actually played) were assessed using the Control Preferences Scale. Differences among patients, who were classified as passive, collaborative, or active, were evaluated using χ2 analyses and analyses of variance. RESULTS: Over half (56.3%) of the patients reported that they both preferred and actually played a collaborative role. Among those patients with concordant roles, those who were older, those with less education and lower income, and those who were less resilient were more likely to prefer a passive role. Several psychological adjustment characteristics were associated with decision-making role, including coping style, personality, and fatalism. CONCLUSIONS: Oncology patients' preferences for involvement in treatment decision making are associated with demographic characteristics as well as with symptoms and psychological adjustment characteristics, such as coping style and personality. These results reaffirm the complexities of predicting patients' preferences for involvement in decision making. Further study is needed to determine if role or coping style may be influenced by interventions designed to teach adaptive coping skills.

Before it is too late: professional responsibilities in late-onset Alzheimer's research and pre-symptomatic prediction.

The development of a wide array of molecular and neuroscientific biomarkers can provide the possibility to visualize the course of Alzheimer's disease (AD) at early stages. Many of these biomarkers are aimed at detecting not only a preclinical, but also a pre-symptomatic state. They are supposed to facilitate clinical trials aiming at treatments that attack the disease at its earliest stage or even prevent it. The increasing number of such biomarkers currently tested and now partly proposed for clinical implementation calls for critical reflection on their aims, social benefits, and risks. This position paper summarizes major challenges and responsibilities. Its focus is on the ethical and social problems involved in the organization and application of dementia research, as well as in healthcare provision from a cross-national point of view. The paper is based on a discussion of leading dementia experts from neuroscience, neurology, social sciences, and bioethics in the United States and Europe. It thus reflects a notable consensus across various disciplines and national backgrounds. We intend to initiate a debate on the need for actions within the researchers' national and international communities.

Perceptions of successful aging among diverse elders with late-life disability.

PURPOSE: Researchers often use the term "successful aging" to mean freedom from disability, yet the perspectives of elders living with late-life disability have not been well described. The purpose of this study was to explore the meaning of successful aging among a diverse sample of community-dwelling elders with late-life disability. DESIGN AND METHODS: Using qualitative grounded theory methodology, we interviewed 56 African American, White, Cantonese-speaking Chinese, and Spanish-speaking Latino disabled elders who participate in On Lok Lifeways, a Program of All-inclusive Care for the Elderly. Through semi-structured interviews with open-ended questions, we explored the elders' perceptions of what successful aging and being old meant to them. RESULTS: Despite experiencing late-life disability, most participants felt they had aged successfully. An overarching theme was that aging results in Living in a New Reality, with two subthemes: Acknowledging the New Reality and Rejecting the New Reality. Participants achieved successful aging by using adaptation and coping strategies to align their perception of successful aging with their experiences. Themes were common across race/ethnic groups but certain strategies were more prominent among different groups. IMPLICATIONS: Across race and ethnic groups, most of these participants with late-life disability felt they had aged successfully. Thus, successful aging involves subjective criteria and has a cultural context that is not captured in objective measurements. Understanding elders' perception will help establish common ground for communication between clinicians and elders and identify the most appropriate interventions to help elders achieve and maintain the experience of successful aging.

Surrogate decision makers' responses to physicians' predictions of medical futility.

BACKGROUND: Although physicians sometimes use the futility rationale to limit the use of life-sustaining treatments, little is known about how surrogate decision makers view this rationale. We sought to determine the attitudes of surrogates of patients who are critically ill toward whether physicians can predict futility and whether these attitudes predict surrogates' willingness to discontinue life support when faced with predictions of futility. METHODS: This multicenter, mixed qualitative and quantitative study took place at three hospitals in California from 2006 to 2007. We conducted semistructured interviews with surrogate decision makers for 50 patients who were critically ill and incapacitated that addressed their beliefs about medical futility and inductively developed an organizing framework to describe these beliefs. We used a hypothetical scenario with a modified time-trade-off design to examine the relationship between a patient's prognosis and a surrogate's willingness to withdraw life support. We used a mixed-effects regression model to examine the association between surrogates' attitudes about futility and their willingness to limit life support in the face of a very poor prognosis. Validation methods included the use and integration of multiple data sources, multidisciplinary analysis, and member checking. RESULTS: Sixty-four percent of surrogates (n = 32; 95% confidence interval [CI], 49 to 77%) expressed doubt about the accuracy of physicians' futility predictions, 32% of surrogates (n = 16; 95% CI, 20 to 47%) elected to continue life support with a < 1% survival estimate, and 18% of surrogates (n = 9; 95% CI, 9 to 31%) elected to continue treatment when the physician believed that the patient had no chance of survival. Surrogates with religious objections to the futility rationale (n = 18) were more likely to request continued life support (odds ratio, 4; 95% CI, 1.2 to 14.0; p = 0.03) than those with secular or experiential objections (n = 15; odds ratio, 0.95; 95% CI, 0.3 to 3.4; p = 0.90). CONCLUSIONS: Doubt about physicians' ability to predict medical futility is common among surrogate decision makers. The nature of the doubt may have implications for responding to conflicts about futility in clinical practice.

Doubt and belief in physicians' ability to prognosticate during critical illness: the perspective of surrogate decision makers.

OBJECTIVES: Although discussing a prognosis is a duty of physicians caring for critically ill patients, little is known about surrogate decision-makers' beliefs about physicians' ability to prognosticate. We sought to determine: 1) surrogates' beliefs about whether physicians can accurately prognosticate for critically ill patients; and 2) how individuals use prognostic information in their role as surrogate decision-makers. DESIGN, SETTING, AND PATIENTS: Multicenter study in intensive care units of a public hospital, a tertiary care hospital, and a veterans' hospital. We conducted semistructured interviews with 50 surrogate decision-makers of critically ill patients. We analyzed the interview transcripts using grounded theory methods to inductively develop a framework to describe surrogates' beliefs about physicians' ability to prognosticate. Validation methods included triangulation by multidisciplinary analysis and member checking. MEASUREMENTS AND MAIN RESULTS: Overall, 88% (44 of 50) of surrogates expressed doubt about physicians' ability to prognosticate for critically ill patients. Four distinct themes emerged that explained surrogates' doubts about prognostic accuracy: a belief that God could alter the course of the illness, a belief that predicting the future is inherently uncertain, prior experiences where physicians' prognostications were inaccurate, and experiences with prognostication during the patient's intensive care unit stay. Participants also identified several factors that led to belief in physicians' prognostications, such as receiving similar prognostic estimates from multiple physicians and prior experiences with accurate prognostication. Surrogates' doubts about prognostic accuracy did not prevent them from wanting prognostic information. Instead, most surrogate decision-makers view physicians' prognostications as rough estimates that are valuable in informing decisions, but are not determinative. Surrogates identified the act of prognostic disclosure as a key step in preparing emotionally and practically for the possibility that a patient may not survive. CONCLUSIONS: Although many surrogate decision-makers harbor some doubt about the accuracy of physicians' prognostications, they highly value discussions about prognosis and use the information for multiple purposes.

Family involvement in end-of-life hospital care.

OBJECTIVES: To examine whether the end-of-life treatment provided to hospitalized patients differed for those who had a family member present at death and those who did not. DESIGN: A retrospective cohort analysis. SETTING: An urban community hospital. PARTICIPANTS: All 370 inpatients who died during a 1-year period. MEASUREMENTS: Medical records were examined for whether life-support treatments were provided or withdrawn, occurrence and timing of do-not-resuscitate (DNR) orders, and use of comfort measures such as narcotics and sedation. RESULTS: DNR orders were written for 85% of patients. For patients who had a DNR order written, the average time from the DNR order to death was 4.8 days. Only 26% of patients had one or more treatments withdrawn. Sixty-seven percent of patients received narcotics before death, and 22% received sedatives. Patients aged 75 and older and African Americans were less likely to have a family member present at death. After adjusting for age and ethnicity, patients who had a family member present at death were more likely to have DNR orders written, to have treatments withdrawn, and to receive narcotics before death. Patients with a family member present at death also had a shorter time to death after DNR orders were written. CONCLUSION: The presence of a family member at death appears to be an indirect measure of family involvement during patients' hospitalization. Family involvement before death may reduce the use of technology and increase the use of comfort care as patients die.