Advance Care Decision Research Articles

预先医疗决定中患者自主权与医师自由裁量权的冲突与解决

预先医疗决定中患者自主权与医师自由裁量权的冲突与解决

Against Futility Judgments for Patients with Prolonged Disorders of Consciousness

Against Futility Judgments for Patients with Prolonged Disorders of Consciousness

Advance care decision making and planning

Advance care planning (ACP) is an important component of quality care for patients with chronic and advanced diseases. General practititoners are ideally placed to initiate ACP because of their role in care coordination of chronic and advanced diseases, and the longstanding relationship they develop with patients. This paper outlines the key barriers to general practice involvement in ACP and describes useful strategies for incorporating ACP into patient care. Barriers to ACP are many and involve health professionals, patients and the healthcare system. To successfully incorporate ACP into patient care, there should be: (i) a commitment from the whole practice to incorporate ACP into patient care; (ii) a focus on building capacity for ACP in the practice; and (iii) efforts to implement and optimise the process of ACP. The outcomes of ACP (eg Advance Care Directives) should be disseminated appropriately to enable them to improve patient care.

Validation of the Decisional Conflict Scale for Evaluating Advance Care Decision Conflict in Community-dwelling Older Adults

PurposeDecisional conflict is a significant and important barrier in end-of-life care planning, and it is often encountered in health professionals' discussions with patients and their families. Little is known about the measurement of decisional conflict, and existing measures are not suitable for all contexts. In this study, psychometric properties of the Decisional Conflict Scale, which was translated for the first time into Korean [Korean version of DCS (K-DCS)], were examined. MethodsA sample of 273 community-dwelling elders was surveyed (mean age: 77.26 years; 80.2% women). Internal consistency reliability and stability reliability were tested by calculating Cronbach α and Pearson's correlation coefficients. Exploratory factor analysis and logistic regression analyses were performed to test validity. ResultsReliability of the K-DCS was acceptable with Cronbach α =.87; test-retest correlation r = .76. Factor analysis showed a two-factor structure with nine items: informed/values clarity and uncertainty. Concordance between K-DCS and the four treatment directives was significant (kappa values ≥.78). Controlling for age and gender, those with decision implementation were more likely to implement their decisions on tube feeding (odds ratio = 5.15, p = .033) and hospice care (odds ratio = 2.83, p = .017). ConclusionThe K-DCS appears to be a valid measure to evaluate decisional conflict about advance directives in community-dwelling Korean older adults. Further validation of the K-DCS is warranted, though caution should be exercised in using subscales because of differences in decisional contexts.

Leveraging the lived experience of surrogate decision makers of the seriously ill to develop a decision support intervention

BackgroundSurrogate decision makers of seriously ill patients are frequently asked to make healthcare decisions without evidence-based decision support. AimsTo describe the lived experiences of surrogate decision makers who have made advance care decisions and identify relevant features of a decision support intervention from their perspectives. MethodsA convenience sample of surrogate decision makers (n=10) of seriously ill patients discharged to an extended care facility within the past 6months participated in focus group discussions. Data were analyzed using content analysis. ResultsThree salient themes were identified: (1) limited preparation, (2) decisional and emotional burden, and (3) content and features of a decision support intervention. ConclusionsSurrogate decision makers of the seriously ill are not prepared for their new role, and experience decisional and emotional burden. Effective decision support interventions must address the decisional and emotional needs of surrogate decision makers to enhance the quality of their decisions.

Deciding right – the UKs first regional integration of advance care decisions

The need for clear decisions and protocols during emergencies has to be balanced against the need to make decisions that avoid unnecessary or distressing treatment. A regional initiative has the...

An Approach to Develop Effective Health Care Decision Making for Women in Prison

Decision making about medical treatment, advance care planning and end-of-life care often is limited or influenced by a patient's capacity to read or comprehend crucial information. Ineffective communication between patient and physician, and the complex nature of serious illness and dying also affect these decisions. America's incarcerated have virtually no autonomy in decision making, especially with regard to medical care and treatment. For the nearly 100,000 incarcerated women in the United States, medical issues differ significantly from those of male prisoners. Many women enter prison with chronic illnesses or are diagnosed with such illnesses while in prison. In addition, America's prison population reflects our country's unsolved literacy problems with almost two thirds of aging inmates lacking basic literacy skills. Maintaining a balance between the Eighth Amendment rights of prisoners and their status as wards of the state is a concern for inmates and for those responsible for their care. The purpose of this study was to identify informational barriers to people making medical care and treatment decisions, particularly those with low literacy. Findings were used to in the development of a tool to assist patients to initiate discussion and become active participants in their own care. Female inmates of diverse ethnicity and literacy levels were recruited through self-selection from the Central California Women's Facility near Sacramento to participate in focus group discussions. The focus groups were guided by a set of research questions and were facilitated by the first author to identify informational barriers to medical care needs. The female prison setting was identified as an appropriate setting for the development of a new approach to stimulate effective decision making by introducing basic information on medical care and treatment, advance care planning, and end-of-life care. A total of 113 inmates participated in 16 focus group, each 2 hours in length. Findings were used to develop a handbook to assist low literacy populations in general, and female inmates in particular, to obtain appropriate medical care and treatment and to make advance care decisions regarding the end of life. Those who face chronic, potentially life-limiting illness cannot make meaningful decisions regarding medical care and treatment without having a basic foundation of health information. Acquiring knowledge and improving communication skills reduce stress and vulnerability, assuring individuals of some control over decision making.

MSJAMA. Advance directives and patient-physician communication.

ADVANCE DIRECTIVES PROVIDE A LEGAL MEANS FOR PATIENTS to state treatment preferences in advance, should they later become unable to participate in decisions about their care. In 1990, Congress adopted the Patient Self Determination Act, which sought to increase the use of advance directives. However, a 1999 study of members of a health maintenance organization found that only one-third of patients aged 65 years or older reported having filed an advance directive. Although such decisions may later be made by others acting as proxies, their judgments of patients’ treatment preferences may not be accurate. Through communication with their patients about advance directives, physicians can play a key role in making advance directives a more effective part of patient care. In the previously cited study, only 15% of patients reported having been asked about their advance care preferences by a physician or nurse, although patients were 3 times more likely to establish an advance directive if they have been asked about their wishes. Many physicians fail to initiate such discussions because they may worry about spending too much time on them, but in fact such discussions average less than 3 minutes in length. Physicians may also fear that patients are uncomfortable discussing issues surrounding their own mortality. In contrast to this assumption, one study found that 93% of outpatients and 89% of the general public were interested in discussing advance directives, with young and healthy individuals expressing as much interest as older, less healthy people. A retrospective study of decedents in a Midwestern community found that 85% had had advance directives, and suggested that the unusually high rate of use was the result of an extensive educational program on end-of-life planning. This implies that advance directives can be both widely used and effective, provided the resources exist to increase patient awareness. While increasing advance directives is an important goal, a greater challenge lies in modifying them to better reflect patient preferences. Advance directive forms that are standard in US health care facilities ask patients general questions, which may or may not be applicable to a patient’s individual circumstances. In addition, patients often misunderstand their options to refuse or withdraw treatment or to choose palliative care. It is possible that even with an advanced directive in place, patients may not receive the care they would want. Patients must be educated about treatment options in order to make well-informed decisions about their future care. A simple way to accomplish this goal is to focus on the acceptability of potential treatment outcomes to the patient. A recent qualitative study of elderly individuals found they were more concerned with functional outcome than with the medical techniques used to achieve that outcome. One method of assessing the acceptability of treatment is to use scenario-based decision aids describing different treatment options and their potential outcomes. Assessing patients’ understanding and willingness to accept potential treatment outcomes increases the likelihood of informed consent and enhances the utility of advance directives. In some cases, advance care decisions are made by someone other than the patient. The accuracy of proxy judgments can be enhanced when the patient and his or her proxy have discussed advance care issues. This is in accord with research demonstrating that patients consider planning advance care to be a social interaction between loved ones, rather than simply a matter of signing forms. Promoting collaboration between family members and loved ones may minimize the ambiguity often found in advance directives, and may better prepare surrogates to make treatment decisions. Physicians can take an active part in this process by encouraging their patients to discuss advance care issues with their chosen surrogates. Although systemic changes such as computerized reminders can encourage physicians to integrate advanced planning directives in their routine patient care, such discussions will still require meaningful communication with patients. Through such discussions, physicians have the opportunity to play a central role in increasing both the effectiveness and use of advance directives.

Individual Preferences and Advance Directives

The concept of preference embraces both the act of preferring and the power of choosing. Over the past several decades, there has been increasing emphasis on individual autonomy, and expanded opportunities to express preferences and make choices around health care decisions. This focus on individual autonomy in health care is both time and culture bound, however, and may be a luxury of modern Western economies. Moreover, individuals from separate age-cohorts and sub-cultures may not share common values regarding the importance of autonomy or the role of the individual in personal and health care decisions. Further, issues of central importance to patient advocates may not take primacy for specific individuals or population groups. One aspect of autonomy is the right of the individual to his or her own life. Several studies indicate that the presence or absence of control, variously defined, exerts important influences on emotional and physical well-being.[1] Studies of interventions to enhance feelings of in nursing homes and other health care settings have refueled interest in the concept of a term used to describe the frequently replicated finding that humans (or animals) exposed to a series of uncontrollable aversive events develop generalized performance deficits.[2] Alison Piper and Ellen Langer contrast mindful control with learned helplessness, describing a cycle in which the individual is told in various ways that he or she is no longer competent (that is, his or her actions no longer influence desired outcomes).[3] The individual accepts this negative image, loses feelings of self-worth, and, consequently, makes little or no attempt to disprove the label, thus supporting the notion of incompetence by becoming unduly helpless. Langer and others have conducted several studies which support her assertion that it is not the actual level of that explains these findings, but rather the perception or illusion of control. What matters is the belief that one does or does not circumstances and outcomes.[4] Nonetheless, perceptions of personal over one's life and environment provide a rich arena of investigation and a topic of powerful advocacy. Preferences and Personal Autonomy Rational choice provides expression of uniquely individual beliefs, desires, preferences, and values. The ideal expression of autonomy is behavior that is spontaneous, self-initiated, and manifests intentionality.[5] Making choices usually involves the balancing of burdens and benefits, and may entail consideration of competing values. However, an apparent choice, even as regards life and death issues, may be superficial, uneducated, or the result of habit rather than the culmination of thoughtful and informed consideration of deeply held values and lifelong preferences. Moreover, choices are made in a social context, based in the relationships and needs of others. Obviously, care must be taken to honor expressed values when possible, but the current emphasis on die opportunity to make choices should be tempered by a recognition that not all persons wish to be involved in all choices. Choosing not to choose is an important theme for future investigation. Although many advocates presume that all individuals wish to be involved in advance care decisions, a growing body of research indicates that some persons do not wish to be involved in or to discuss advance care with their physicians.[6] Although there is a suggestion that older patients are less likely to wish involvement than younger patients, there are no clearly discernible trends regarding characteristics of persons who prefer not to have such discussions, nor do we have clear data to indicate why they do not wish to be involved. Most studies, however, indicate that a majority of persons do wish to be involved, in some way, in end-of-life decisions. …