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Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support. Before initiation of VSED, clinicians should carefully screen for inadequately treated psychiatric conditions, unaddressed symptoms, existential suffering, and evidence of coercion-consultation from palliative medicine, psychiatry, or ethics is often indicated. The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria, progressive disability, delirium, and somnolence. Although physiologically similar to cessation of artificial nutrition and hydration, the onset and management of symptoms is often different. We propose an organized system for evaluating individual appropriateness for VSED, anticipatory guidance, and management of symptoms associated with VSED. A brief review of ethical and legal considerations follows.

Objectives To explore how older adults in the community with a limited life expectancy make healthcare decisions and the processes used when they are not in an acute crisis. Design Grounded theory. Setting Medical programs and geriatrics clinics at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. Participants Community-dwelling adults aged 67 to 98 with a life expectancy of less than 1 year (N = 20). Measurements In-depth semistructured interviews in participants’ homes. Constant comparative analysis was used to develop codes and identify themes. Results Participants generally delegated decisions to others, expressing their wishes by describing desired end-of-life outcomes and highlighting meaningful aspects of their lives. They did this in the belief that the delegate would make appropriate decisions on their behalf. In this way, participants were able to achieve a sense of control without being in control of decisions. Four themes emerged from the analysis that reflect the various approaches participants used to articulate their goals and maintain a sense of control: direct communication, third-party analogies, adaptive denial, and engaged avoidance. Conclusion These findings challenge the prevailing view of personal autonomy. These older adults suggest a path to decision-making that focuses on priorities and goals, allowing them to take a more-passive approach to decision-making while still maintaining a sense of control.

In the age of person-centered care, there is an emphasis on promoting patient autonomy and surrogate decision maker authority in making treatment decisions that are aligned with the patient's priorities and values. As technological advances offer multiple clinical options with various levels and types of risks and benefits, person-centered clinical practice encourages the incorporation of patients' and families' heterogeneous experiences into decisions regarding illness management. In caring for frail elderly adults, clinicians are sometimes faced with situations in which individuals and their surrogate decision-makers request a treatment that the clinicians feel is clinically inappropriate. This article provides a case example of a frail older adult with advanced chronic kidney disease who requests dialysis despite the advice of his nephrologist to pursue conservative management. The four-box approach, which provides clinicians with a structured ethical framework to facilitate informed and ethically justified treatment decisions, is then introduced. By considering the patient's medical indications, preferences, quality of life, and contextual factors, how each consideration plays a unique yet equally important role in informing clinically responsible and person-centered care is illustrated.

As the overall incidence of Alzheimer's disease rises, the burden on caregivers and law enforcement institutions will increase to find individuals who wander. As such, technological innovations that could reduce this burden will become increasingly important. One such innovation is the GPS Shoe. As with any innovation involving the transfer of personal data to third parties, potential pitfalls with respect to loss of privacy and inadequate consent counterbalance the substantial promise of GPS shoes. To some extent, advance planning can mitigate these concerns, wherein individuals willingly elect to be monitored before their impairments progress to a stage that makes such authorization impractical. Nonetheless, tension may arise between the peace of mind of caregivers and family members and other important considerations at the intersection of autonomy, privacy, dignity, and consent. Ultimately, confronting ethical, legal, and policy considerations at the front end of product development and deployment will help ensure that new technologies are used wisely and that their lifesaving potential is realized.

Health care for demented older persons presents a range of ethical dilemmas. The disease process affects cognitive abilities, making competency a central issue. The syndrome of dementia carries a complex social overlay that colors perceptions of these patients and of their capacity for making decisions. An argument is made for a coherent, ethically based decision-making process that can be applied across the whole spectrum of dementia severity. The major ethical principles implicated in assessing a patient's ability to consent to treatment are reviewed. A sliding scale model of capacity is presented, in which the patient's ability to decide is weighed against the risk associated with the treatment decision in question. This model preserves the autonomy of the demented patient while minimizing the potential for harm. In situations where the patient is deemed incapable, two approaches that can be applied to making treatment decisions are contrasted. The 'prior competent choice' standard stresses the values that the patient held while competent. The 'best interests' standard moves the focus to the patient's subjective experience at the time the treatment is considered. The relative merits of these two concepts are evaluated in the context of dementia. Surveys of actual decision-making practice are contrasted with ethical and legal principles. The challenges inherent to applying the best interests standard are discussed. Despite the pitfalls, this standard offers an opportunity to restore the demented patient's sense of self.

OBJECTIVES: To determine whether life values are related to resuscitation preferences and living will completion in an older population and to assess beliefs about the applicability of living wills. DESIGN: Individual structured interviews. SETTING: An independent retirement community. PARTICIPANTS: One hundred thirty-two subjects older than 63 years of age. MEASUREMENTS: Resuscitation preferences were elicited in five hypothetical scenarios. Subjects with living wills were asked whether their living will would play a role in the scenarios. Subjects rated the importance of 13 life value statements. RESULTS: The percentage of subjects desiring CPR in each scenario was as follows: current condition (66%); acute illness (33%); terminal disease (8%); functional impairment (8%); and dementia (7%). The percentage of those with a living will who thought their living wills would play a role in the scenarios was as follows: acute illness (84%); terminal disease (93%); functional impairment with intact cognition (66%); and dementia (91%). Factor analysis of the life value statements revealed five meaningful factors: quality of life; capacity/autonomy; family relations; physical comfort; and treatment philosophy. Multiple correlations were found between four of five life value factors and hypothetical resuscitation preferences or the presence of a living will. CONCLUSION: Subjects misinterpreted the applicability of living wills in nonterminal illness scenarios. A relationship between life values and resuscitation preferences was noted, which emphasizes the importance of eliciting and including life values when discussing advance directives. J Am Geriatr Soc 44:954–958, 1996.

OBJECTIVE: To determine if physicians know and can apply the legal standard for determining competence; to determine if physician assessment of competence varies by physician age or specialty. DESIGN: Mail survey with specific questions about a patient scenario and general questions about the law. PARTICIPANTS: 2100 randomly selected Massachusetts internists, surgeons, and psychiatrists. MEASUREMENTS: In Part I, the survey presented a scenario adapted from a court case that involved an elderly woman's refusing lifesaving surgery. The scenario was divided into three sections: the medical history, the patient's rationale, and a psychiatrist's opinion that the patient was incompetent. Respondents were not told that an appellate court later decided the psychiatrist applied the wrong standard of competence and the patient was indeed competent. Respondents were asked whether the patient was competent, whom they would consult, and how they would respond. Part II posed a series of theoretical questions about competence. Group differences were tested by chi-square. MAIN RESULTS: Surveys were returned by 823 (41%) of the sample. In Part I, before the psychiatrist's opinion, 58% thought the patient was competent, 92% would consult a psychiatrist to help assess competence, and only 17% would to go to court. After the psychiatrist's opinion, only 30% thought she was competent and 55% would go to court. In Part II, 89% knew the correct standard for competence; however, most incorrectly responded that conditions such as dementia and psychosis establish incompetence. Psychiatrists performed significantly better on theoretical, but frequently worse on scenario, questions. CONCLUSIONS: Physicians in general, and psychiatrists in particular, know the standard for competence but may apply it incorrectly. This suggests that the common clinical practice of relying on expert medical opinion may introduce bias and produce inaccurate results that undermine patient autonomy.

With the upcoming reform of the healthcare system and the greater emphasis on care in the home and other living environments, geriatric providers will need alternate ways of monitoring disease, activity, response to therapy, and patient safety. Current understanding of the dynamic nature of chronic illnesses, their effects on health over time, and the ability to manage them in the community are limited to measuring a set of variables at discrete points in time, which does not account for the dynamic interactions between physiological systems and the environments of daily life. Recent developments of sensors, data recorders, and communication networks allow the unprecedented measurements of physiological and sociological data for use in geriatrics care. This article identifies and discusses the important issues regarding the use of monitoring technologies in elderly patients. The goals are fourfold. First, some emerging technology that may improve the lives of older adults and improve care are highlighted. Second, the possible applications of technology in geriatrics settings are discussed, with a focus on acute falls, dementia, and cardiac conditions. Third, real and perceived concerns in using monitoring technology are identified and addressed, including technology adoption by elderly people; stigma; and the reduction in social contact; ethical concerns of privacy, autonomy, and consent; concerns of clinicians, including information overload, licensure, and liability; current reimbursement schemes for using technology; and the reliability and infrastructure needed for monitoring technology. Fourth, future approaches to make monitoring technology useful and available in geriatrics are recommended.

To measure end-of-life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture-based attitudes and extent of ACP.Cross-sectional interview.Twenty-two senior centers in greater Los Angeles.One hundred forty-seven Latinos aged 60 and older.EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family-centered decision-making, trust in healthcare providers, and health and sociodemographic characteristics.If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family-centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P-values.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1-2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1-2.3) were independently associated with having an advance directive.The majority of older Latinos studied preferred less-aggressive, comfort-focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high-intensity care inconsistent with their preferences.

Objective To determine the relative importance of factors influencing physicians to use tube feedings in patients lacking decision-making capacity. Design Survey. Setting and Participants Four hundred thirty-nine members of the Missouri Academy of Family Physicians. Measurements Using a mailed questionnaire, physicians were asked for a decision about feeding tube placement in an 89-year-old man who was unable to swallow or communicate after a stroke. Changing the conditions of the scenario, we then evaluated the influence of patient age, duration of disability, a living will, the Cruzan decision, and family preferences on the physician's decision. Results After reading the initial case history, 47% of physicians opposed tube feedings. Physicians who were told that the patient signed a living will specifically excluding tube feedings were more likely to oppose tube feedings than those who were told that he signed only a standard living will (53% vs 42%; P = 0.02). Forty-two percent of physicians who initially suggested a feeding tube changed their recommendation if the family opposed it. Sixty-six percent of physicians who initially opposed a feeding tube changed their recommendation if the family “pushed” for it. Thirty-three percent of physicians who initially opposed tube feedings under the living will scenario would favor tube feedings if the patient had not signed a living will. Twenty-two percent of physicians who initially opposed tube feedings would change to favor them if the issue had arisen before the Cruzan decision. Conclusions Among this group of physicians, there was no consensus on whether tube feedings should be initiated. However, it was found that the family's opinion was the most influential factor affecting the physician's recommendation about tube feedings. Most physicians endorsed family preferences for tube feedings even when this intervention was specifically opposed in the patient's living will.

Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.

To determine whether a functional-task exercise program and a resistance exercise program have different effects on the ability of community-living older people to perform daily tasks.A randomized, controlled, single-blind trial.Community leisure center in Utrecht, the Netherlands.Ninety-eight healthy women aged 70 and older were randomly assigned to the functional-task exercise program (function group, n=33), a resistance exercise program (resistance group, n=34), or a control group (n=31). Participants attended exercise classes three times a week for 12 weeks.Functional task performance (Assessment of Daily Activity Performance (ADAP)), isometric knee extensor strength (IKES), handgrip strength, isometric elbow flexor strength (IEFS), and leg extension power were measured at baseline, at the end of training (at 3 months), and 6 months after the end of training (at 9 months).The ADAP total score of the function group (mean change 6.8, 95% confidence interval (CI)=5.2-8.4) increased significantly more than that of the resistance group (3.2, 95% CI=1.3-5.0; P=.007) or the control group (0.3, 95% CI=-1.3-1.9; P.001). Moreover, the ADAP total score of the resistance group did not change significantly compared with that of the control group. In contrast, IKES and IEFS increased significantly in the resistance group (12.5%, 95% CI=3.8-21.3 and 8.6%, 95% CI=3.1-14.1, respectively) compared with the function group (-2.1%, 95% CI=-5.4-1.3; P=.003 and 0.3%, 95% CI=-3.6-4.2; P=.03, respectively) and the control group (-2.7%, 95% CI=-8.6-3.2, P=.003 and 0.6%, 95% CI=-3.4-4.6; P=.04, respectively). Six months after the end of training, the increase in ADAP scores was sustained in the function group (P=.002).Functional-task exercises are more effective than resistance exercises at improving functional task performance in healthy elderly women and may have an important role in helping them maintain an independent lifestyle.

As residents in assisted living facilities (ALFs) try to "age in place" but decline in health, the facilities, families, and residents must find a balance between protecting the health and safety of residents in ALFs and maintaining their desire to live independently. The assisted living industry incorporates resident autonomy into its goals, but with regard to resident health and safety, recent reports have found that ALF staff are struggling to provide adequate care for residents with increasingly complex needs. Moreover, state regulations are not consistent in obligating ALFs to prioritize adequate health care and protection for residents over resident autonomy, or vice versa. A set of admission and continued stay criteria for individuals residing in assisted living that could serve as a guideline for state regulations in addressing the balance between safety and autonomy in ALFs is recommended.

OBJECTIVES: This study examined the importance that nursing home residents and nursing assistants ascribed to control and choice over everyday issues, the satisfaction of residents with their control and choice over these issues, and the nursing assistants' impressions of the extent to which control and choice exist for nursing home residents on everyday matters. DESIGN: Cross-sectional in-person interviews with a stratified representative sample of nursing home residents and nursing assistants using semi-structured interview protocols with both fixed-choice and open-ended questions. SETTING: A random sample of 25 nursing homes in the Twin Cities, MN area; a random sample of five nursing homes in North Little Rock, AR; all five nursing homes in Sante Fe, NM; and five purposively selected nursing homes in each of New York City and Los Angeles, CA. PARTICIPANTS: One hundred thirty-five cognitively intact residents, three from each facility, were selected and included the resident council chair, one randomly selected short-stay resident, and one randomly selected long-stay resident from each facility. Also participating were 134 nursing assistants (1 selected randomly from each shift from those employed at least two-thirds time and who had worked in the facility for at least 3 months). MEASUREMENTS: The most important measurements were ordinal-level ratings of the importance of choice and control for nursing home residents over 10 selected areas of everyday life; ordinal measures of residents' satisfaction with their choice and control over these areas; and nursing assistants' ratings of the extent to which they thought it possible for residents to achieve choice and control. Open-ended comments were also elicited. Also measured were demographic data, ADL status, frequency of trips away from the nursing home, frequency of receiving visitors, and (for nursing assistants) length of employment, wages, job satisfaction, and extent to which they knew the residents under their care. MAJOR RESULTS: Cognitively intact nursing home residents attach importance to choice and control over matters such as bedtime, rising time, food, roommates, care routines, use of money, use of the telephone, trips out of the nursing home, and initiating contact with a physician. Nursing assistants view such control as important to residents. Residents and staff differ significantly in the importance attached to particular items, with staff placing lower importance than residents on use of the telephone and personal expenditures and higher importance on control and choice over visitors and formal nursing home activities. Residents were not very satisfied with their control and choice, and nursing assistants viewed them as unlikely to experience control and choice. Nursing home, resident, and staff characteristics were not associated with the patterns of results. CONCLUSIONS: A self-defeating cycle has been identified where neither resident nor staff are optimistic about achieving more resident control and choice, which both groups perceive as desirable. To end this cycle, suggestions are offered for structuring the role of the nursing assistant, physician and nurse leadership, changes in nursing home routines and practices, and public policy changes.

This paper takes up the question of physician-assisted suicide (PAS) in Alzheimer's disease (AD), reviewing arguments for and against in a broad interdisciplinary context. Preemptive PAS-AD involving competent patients raises the further question of AD-euthanasia. The author concludes, after thorough assessment of the literature, that caution in moving toward AD-PAS is necessary. However, where PAS is legalized, it may be difficult to justify precluding people with AD from access.

OBJECTIVE: To better understand the implementation of the Patient Self-Determination Act (PSDA) in long-term care, with a focus on the informing process as it affects advance directives. DESIGN: Retrospective cohort study of nursing home admissions, using medical record reviews, and a companion qualitative survey using key informant interviews. SETTING: Eleven nursing homes in Connecticut. PARTICIPANTS: A total of 600 residents randomly selected from six randomly chosen nursing homes and 19 key informants selected from five purposely sampled nursing homes in Connecticut. MEASURES: Institutional compliance with the PSDA requirement to provide written information about advance directives at admission and aspects of the informing process, including to whom the information is given. RESULTS: Compliance with the PSDA requirement to provide information at admission is high (90.7 of admissions in the post-PSDA cohort received information within 1 week of admission). However, in nearly 70% of admissions in which information was provided, someone other than the residents received the information. Staff often cited the resident's cognitive impairment as a reason for excluding residents from this informing process. However, even among those residents judged to be alert and oriented at admission, someone other than the resident received the information 47.7% of the time. CONCLUSIONS: Substantial numbers of residents may be inappropriately excluded from participating in discussions because of difficulties in determining decisional capacity to discuss future treatment wishes. The research highlights the difficulties of enhancing resident participation and autonomy in long-term care through procedural regulations such as the PSDA. More reliable methods of determining resident decisional capacity are needed to integrate the full intent of the PSDA into clinical practice in long-term care.

These guidelines summarize the content of meetings of family caregivers and individuals with dementia of the Alzheimer's type who identified and spoke on ethical issues in dementia care and who engaged in dialogue with an interdisciplinary and interprofessional group of individuals working in the field of Alzheimer's disease. This inductive method begins with attentive listening to the voices of the affected population and family members, in contrast with a theoretical and deductive approach to ethics.

PURPOSE: To identify medical care indicators for nursing home terminal care. DATA SOURCES: Studies examining care of terminally ill patients were identified using computer, bibliography, and expert searches; input from nursing home medical directors in Maryland; and input from expert geriatricians. STUDY SELECTION: More than 900 articles, books, and abstracts from meetings covering medical care for terminally ill patients were reviewed. Information from more than 100 publications is included. DATA EXTRACTION: Indicators of medical care for terminally ill patients, which can be used to quantify performance with respect to standards, guidelines, and options, were identified initially through review of the literature. DATA SYNTHESIS: Indicators were refined by input from medical directors of Maryland long-term care facilities and subsequent review by expert geriatricians. CONCLUSIONS: Minimum standards for which 100% performance is expected are communication of advance directives, attention to pain control, and attention to relief of dyspnea. Performance indicators for medical care guidelines and options in terminal care of nursing home patients are also described.

Objective To examine public opinion regarding certain elements of consent: disclosure, advance directives, substitute decisions, emergency treatment, and advocacy. Design Cross-sectional random-digit-dialing telephonic survey. Setting General public. Participants One thousand randomly-selected adults living in Ontario. Interventions None. Main Outcome Measures Self-reported attitudes and behaviors. Results Of 5,708 telephone numbers drawn, 641 were non-valid or non-residential, 1,283 were not in service, 1,068 had no answer, a busy line, or an unavailable respondent, 147 subjects had a language barrier, 1,497 subjects refused, 72 interviews were incomplete, and 1,000 interviews were completed. With regard to disclosure, 33% of respondents said that a doctor should withhold information from a patient if asked to do so by the patient's family. With regard to advance directives, 36% of respondents had had advance discussions with their families, and 12% had completed a living will. With regard to substitute decisions, 77% of respondents said that they would want their wishes followed if they were unable to make medical decisions for themselves; 58% wanted their spouse or partner to make such decisions for them. With regard to emergency treatment, 48% of respondents stated that a doctor should give a life-saving blood transfusion to an unconscious adult carrying a card stating that blood transfusion was against his or her religious beliefs. With regard to advocacy, 78% of respondents supported mandatory advocacy services for serious health decisions such as whether to have heart surgery; 33% supported advocacy services for less serious decisions such as whether to have a dental filling. Conclusions These data highlight the need to reconsider legislative provisions regarding and/or target public education programs toward specific consent-related issues including disclosure, advance directives, substitute decisions, emergency treatment, and advocacy.

Major changes in the federal oversight of nursing home care were passed by Congress and became law as the Nursing Home Reform Amendments of the Omnibus Budget Reconciliation Act of 1987 (OBRA 87). The final regulations to implement OBRA 87 were published in September, 1991. The intent of this article is to provide an overview of selected parts of the nursing home reform regulations, which have a direct impact on physician practice within nursing facilities, and to offer strategies for successful management of the changes that are required. A brief review of the origins of the legislation and the process by which law is turned into practice is provided as a context in which to understand the changes mandated by the Nursing Home Reform Amendments of OBRA 87.