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Advance directives, dementia, and 'the someone else problem'

Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the directive -- which is supposed to apply to the individual who completed it, not to someone else. This is 'the someone else problem'. After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates 'the someone else problem' in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: 'The someone else problem' is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified.

Advance Directive Adherence↗

Advance directives in the primary care setting.

Advance directives have been available for more than 20 years, yet only 2% of patients report having had a discussion about them with their physician. Physicians and patients appear to be reluctant to bring up the subject despite evidence that patients not only want help with advance directives, but report more satisfaction with their health care when the topic is addressed. The primary care setting is particularly well-suited to the establishment of advance directives. A clearer understanding of the benefits of advance directives to physicians and their patients can hopefully increase the use of this important health care resource.

Advance Directives↗

Advance directives. Stability of patients' treatment choices.

BACKGROUND: Advance directives are intended to extend patient autonomy into periods of mental incompetence. However, for advance directives to fulfill this objective, patients' choices must be reasonably consistent over time. Thus, we assessed the stability of the advance treatment decisions of patients and members of the public. METHODS: In a prospective cohort study of 495 outpatients and 102 members of the public, we studied the stability of scenario- and treatment-specific choices. Subjects completed an advance directive, which included four illness scenarios with 11 treatment choices in each, as part of a questionnaire. A second interview was completed by 296 patients and 78 members of the public after 6 to 12 months; 154 patients completed a third interview after a further 6 to 12 months. We assessed stability by comparing each choice between interviews. RESULTS: Stability of choices was moderately high among patients (pooled kappa = 0.39) and members of the public (pooled kappa = 0.48). Stability improved with repeat interview (pooled kappa = 0.47 among patients). Patients who had discussions with their physicians showed more improvement (kappa = 0.57) than others. Patients had a wide range of personal stability levels (0% to 100%), but individuals starting out stable rarely became less so (93% of the patients with 85% to 100% stability maintained this level of stability on the third interview). Hospitalized patients showed no significant difference in stability at the second interview, but their stability was not improved at the third interview. CONCLUSIONS: Our findings generally support the use of advance directives. Most people made moderately stable decisions when using scenario- and treatment-specific directives, and stability improved after they reviewed the decisions, especially among those who had discussions with their physicians. Recent hospitalization did not decrease stability, although it appeared to reduce the improvement that others achieved with repeat interview. These findings suggest that advance directives can be relied on 1 to 2 years after completion to reflect a patient's choices.

Adult↗

[General practice of advance directives in the USA].

DEFINITION OF THE PROBLEM: Advance directives are written documents which tell what a person wants or does not want if he/she in the future cannot make his/her wishes known about medical treatment. There are three major forms of advance directives in the US: living will, durable power of attorney, and medical directive. Even though advance directives have been used for over 25 years, probably no more than 20% of Americans have prepared a written directive. What are the reasons for this relatively small percentage? It has been argued that they run the opposing risks of either being too general or too specific and that they often use a vague and confusing terminology. Furthermore, the two most frequently cited barriers were the patient's expectation that the physician should take the initiative and the sense that such issues were only relevant for those who were older or in worse health. Progress in developing useful advance directives cannot stop with existing documents. A critical evaluation of advance directives and the development of new ideas will be necessary. Therein, the most important area for future efforts is empirical research.

Advance Directives↗

Advance directives affecting medical treatment choices.

Advance directives theoretically enhance individual autonomy and facilitate treatment decision making at the end of life. There is little empirical evidence to support this, however. Based on a national postal survey of 2172 randomly selected medical practitioners (response rate 73%), this paper examines the effect advance medical directives have on (a) treatment prescribing for terminally ill people and (b) the degree of difficulty practitioners experience in making treatment choices. A hypothetical patient with Alzheimer's disease and an acute life-threatening illness was presented with and without an advance directive. With a directive, respondents were more uniform in their choice of treatment, with 86% choosing as the patient had requested. Difficulty with decision making was also less with the directive, 31% vs 45% with no directive. The data indicate that advance directives do affect practitioners' treatment choices in favor of patient wishes and reduce the difficulty practitioners may experience in making them.

Advance Directives↗

Factors influencing dialysis patients' completion of advance directives.

Although chronic dialysis patients support the use of advance directives, they rarely complete them. We asked 80 chronic dialysis patients (60 receiving in-center hemodialysis and 20 receiving peritoneal dialysis) why they had not completed an advance directive, and gave them the opportunity to complete a dialysis-specific living will and to designate a health care proxy. Questionnaires containing the dialysis-specific living will, patient demographic information, and questions about advance directives were distributed during a routine hemodialysis session or peritoneal dialysis clinic visit by a nurse working in the unit. Forty-one hemodialysis patients and 14 peritoneal dialysis patients completed the questionnaires (69% response rate). The mean age was 53 +/- 15 years and the mean time on dialysis was 5 +/- 5 years. Fifty-eight percent of the patients were women, 57% were white, 67% were hospitalized in the past year, 23% were employed, 70% had children, and 21% lived alone (43% lived with a partner and 11% lived with parents). All patients thought advance directives were a good idea, but only 35% had completed one and only seven (14%) had discussed wishes for life-sustaining therapy with their nephrologist; 34 patients (67%) had discussed their wishes with their family. Most said they had not completed an advance directive because their family knew what they would want (12 of 32 patients [38%]). Thirty-nine patients who completed the questionnaire also completed the dialysis-specific living will (71%). Those who did not complete the dialysis-specific living will chose not to because they were not sure what they would want done (12 of 16 patients [75%]). The only demographic factor that influenced completion of the dialysis-specific living will was having children: more patients with children did not complete the will (12 of 37 patients [32%] with children v two of 16 patients [13%] without children; P = 0.02). The dialysis-specific living will asks about choices for life-sustaining treatment (cardiopulmonary resuscitation and dialysis) based on one's health state (current health; permanent coma; terminal illness; mild, moderate, or severe stroke; dementia). Using patient-specific advance directives that focus on health states rather than life-sustaining interventions (eg, the dialysis-specific living will) and repeated discussion of advance directives and advance care planning initiated by dialysis unit staff may improve the completion of advance directives by chronic dialysis patients. The appropriate focus of such issues should include family involvement and health states rather than treatment interventions.

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Advance directives for medical care--a case for greater use.

UNLABELLED: BACKGROUND. Advance directives for medical care and the designation of proxy decision makers to guide medical care after a patient has become incompetent have been widely advocated but little studied. We investigated the attitudes of patients toward planning, perceived barriers to such planning, treatment preferences in four hypothetical scenarios, and the feasibility of using a particular document (the Medical Directive) in the outpatient setting to specify advance directives. METHODS: We surveyed 405 outpatients of 30 primary care physicians at Massachusetts General Hospital and 102 members of the general public in Boston and asked them as part of the survey to complete the Medical Directive. RESULTS: Advance directives were desired by 93 percent of the outpatients and 89 percent of the members of the general public (P greater than 0.2). Both the young and the healthy subgroups expressed at least as much interest in planning as those older than 65 and those in fair-to-poor health. Of the perceived barriers to issuing advance directives, the lack of physician initiative was among the most frequently mentioned, and the disturbing nature of the topic was among the least. The outpatients refused life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent), with small differences between widely differing types of treatments. Specific treatment preferences could not be usefully predicted according to age, self-rated state of health, or other demographic features. Completing the Medical Directive took a median of 14 minutes. CONCLUSIONS: When people are asked to imagine themselves incompetent with a poor prognosis, they decide against life-sustaining treatments about 70 percent of the time. Health, age, or other demographic features cannot be used, however, to predict specific preferences. Advance directives as part of a comprehensive approach such as that provided by the Medical Directive are desired by most people, require physician initiative, and can be achieved during a regular office visit.

Advance Directives↗

Advance directives in Utah. Information from death certificates and informants.

BACKGROUND: Advance directives have been studied in different patient populations and institutions. Most reports have shown limited use and little medically observable effect. To our knowledge, no previous study has focused on the use of advance directives by individuals who have died or how their family members perceived the documents' effect. METHODS: We contacted informants listed on Utah Death Certificates from 1992 to estimate the prevalence and effect of advance directives. Eighty-two percent of 1398 informants we contacted agreed to our telephone interview. RESULTS: More than 50% of decedents reportedly completed an advance directive. Individuals older than 65 years (57.3%), women (58.1%), nursing home residents (63.4%), and hospice users (75.2%) were most likely to have had advance directives. Education, religion, religiosity, and location had no effect on prevalence. Most informants stated that advance directives had no effect on the decedent's care, but a minority felt they helped to limit treatment. Do-not-resuscitate orders were written more often for patients with advance directives. Feeding tubes were removed more often from decedents with living wills than from other decedents. Mechanical ventilatory support was not less frequent in patients with advance directives. CONCLUSIONS: Our study confirms others that found little evidence that advance directives affect life-sustaining treatments. In the infrequent situations when they apply, they may be more persuasive than family members in convincing physicians to limit treatment. We observed that survivors had 2 perceptions about advance directives, not emphasized in previous reports, that they seemed to limit treatment and to ease their burden of decision making.

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The use of advance directives in a population of Asian Indian Hindus.

Advance directives are a way to communicate the kind of care that people desire at the end of life. Recent research shows that ethnic minorities have been found to complete advance directives significantly less often than Caucasians, and no information was available regarding advance directives in the Asian Indian population. To address this shortcoming, this descriptive exploratory design sampled a community sample of 45 Asian Indian Hindus. Being female and having an individualistic decision-making style were significantly positively correlated with advance directive completion. Having strong religious affiliation and a family decision-making style were significantly negatively correlated with advance directive completion. The results of this study provide needed information regarding the Asian Indian population and how Hinduism affects advance directives.

Adult↗

Advance directives and the patient self-determination act.

Advance directives cover a wide variety of situations concerning the advance planning for medical care. Advance directives have existed for approximately 20 years; however, their forms and uses are presently expanding and evolving. This article presents advance directives, their various forms and uses, and reviews the current data on how well they achieve their desired goal. The Patient Self Determination Act, which was designed to promote the acknowledgment and completion of advance directives, is also discussed, as well as practical suggestions for the current and future uses for advance directives.

Advance Directives↗

Considering advance directives for oncology patients.

Communication is an important cornerstone to the physician-patient relationship when considering advance directives. Discussing advance directives with patients is a process best initiated in routine, well-adult care that can be made more daunting when the patient is critically ill; yet, when patients are afflicted with cancer, communication on advance directives can be optimized when the primary care physician and oncologist together work with the patient. The need to counsel patients on advance directives regardless of the venue (whether inpatient or outpatient) highlights that an ongoing alliance between the oncologist and the primary care physician can help facilitate consent to, and allow periodic review of, advance directives by cancer patients. This process ensures that the patient's preferences are respected at life's end.

Advance Directives↗

Advance directives in COPD.

Completed when a person is capable, advance directives guide future health care decisions when the person has become incapable. Advance directives are based on the ethical principle of respect for auronomy, and are legally recognized in many jurisdictions. Although the advance directives currently available are generic, a disease-specific directive may be useful for people with COPD. In clinical practice, advance directives raise a number of challenging questions: With whom should the topic be raised? Should a proxy or instruction directive be used? What should be done if the patient changes his/her mind about treatment? How should people insure their advance directive is available when needed? A research for advance directives is outlined.

Advance Directives↗

Readability of advance directive documents.

PURPOSE: To assess the readability of advance directive documents. DESIGN: Descriptive. SAMPLE: Convenience, 10 advance directive documents from various sources. METHODS: Advance directive documents were electronically scanned in 1994 then evaluated using three readability formulas: Flesch-Kincaid Grade Level, Flesch Reading Score, and Gunning's Fog Index. FINDINGS: The average readability (in school grade levels) of the 10 documents was 11.3 using the Flesch-Kincaid Grade Level and 18.2 using the Gunning's Fog Index. CONCLUSIONS: All documents were above reading levels usually recommended for patients. CLINICAL IMPLICATIONS: Patients must be able to read and understand advance directive documents before signing them. Refinement of the documents is recommended to support patient understanding and autonomy in end-of-life care.

Advance Directives↗

[Advance directives from the medical viewpoint].

Advance directives, enabling patients to declare their wishes and preferences for future situations, when they no longer are able to communicate, appear to be attractive. The concept, however, is based on two important presuppositions: First on the recognition of the right of self-determination. Second, it is assumed that a patient can direct medical care not only hic et nunc, but can advance autonomy into future incompetent states. It is the second presupposition that causes most of the ethical concerns and practical problems. Some of the limitations can possibly be overcome, or at least minimized, by careful drafting, frequent revision and the appointment of a proxy. However, advance directives should be integrated into the process of patient information and care.

Advance Directives↗

Advance directive group education in a VA outpatient clinic.

Advance directive education is an important social work role in many medical settings. Despite its obvious benefit in terms of time-effectiveness, group education around advance directives has received little previous attention in the social work research literature. In a retrospective cohort (n = 13,913), we compared three education strategies in an attempt to evaluate their effectiveness on advance directive completion: (1) participation in a group session, (2) one or more individual sessions with a social worker, and (3) no advance directive education. Social work education of any kind resulted in an overall completion rate of 20% versus 2.1% in the non-intervention group. Group education was twice as effective as an individual social work session, and as effective as multiple sessions, but less time consuming. Our study confirmed previous findings that older patients are more likely to complete advance directives independent of education strategy. Participants in the group sessions were also older than the rest of the cohort, leading us to hypothesize about the particular appeal of group education to older patients. We conclude that group education is an effective as well as time- and cost-efficient social work tool for facilitating completion of advance medical directives, particularly among older patients.

Advance Directives↗

Getting advance directives to the public: a role for emergency medicine.

Advance directives are becoming more common in the health care system in the United States. Advance directives include "living wills," "durable powers of attorney for health care," "do not resuscitate orders," and the newer "medical directive." They are designed to allow individuals to determine the course of their medical care in the event that they are no longer able to transmit the information to their physician. The US Supreme Court's recent Cruzan decision increased the importance of these legal instruments by declaring that "clear and convincing" evidence may be required by states in order to terminate life support in a patient unable to express his wishes about care. Unfortunately, for many reasons, advance directives are often not completed by those who might desire them. Only 9% of Americans have executed advance directives. Emergency physicians have the opportunity to assist their patients in advance by disseminating advance directives to those who have contact with the emergency department: patients, family members, friends, health care workers, emergency medical services personnel, and police. A plan is suggested that includes education, the availability of advance directives, personnel available to help with completion of the documents, and immediate entry of the directive into a medical chart, if requested. This is in conformance with a recent policy adopted by the American College of Emergency Physicians.

Advance Directives↗

Advance directives: barriers to completion.

The concept of advance directives, although sound in theory, appears to be failing to meet the needs of many patients. Advance directives have been endorsed by both the healthcare profession and the general public, yet few individuals have documented their wishes for treatment preferences in end-of-life decisions. A review of 15 research articles revealed three main barriers to the completion and effective use of advance directives. These barriers are: (a) lack of education or knowledge regarding advance directives, (b) difficulties with paperwork completion, and (c) discordance between patient, family members or proxy, and provider. Future research is suggested to generate information that will facilitate meeting the needs of patients and their families in this most difficult aspect of healthcare delivery.

Advance Directives↗

The effects of providing chronic hemodialysis patients written material on advance directives.

Because little is known about the stability of knowledge, attitudes, and behavior toward advance directives in chronic hemodialysis patients, we chose to determine whether providing written information on advance directives affects chronic hemodialysis patients' knowledge, attitudes, and behavior toward advance directives over time. Various patient demographic factors were also assessed for association with the above parameters. Thirty-one chronic in-center hemodialysis patients (55% women, 48% African-Americans, 81% on dialysis for more than 3 years) completed a questionnaire consisting of patient demographic features and agreement or disagreement with statements concerning knowledge, attitudes, and behavior toward advance directives. The responses were scored from 1 (strongly agree) to 5 (strongly disagree). Patients completed the questionnaire before, shortly after (1 to 3 months), and distant to (6 to 7 months) receiving written information on advance directives. Receiving written information on advance directives did not improve patients' understanding of living wills (58% understood before, 77% shortly after, and 58% distant to receiving the information) and only transiently improved understanding of a health care proxy (32% before, 67% shortly after [P < 0.006], 55% distant [P = not significant]) and the hospital policy on advance directives (35% before, 61% shortly after [P < 0.02], 48% distant [P = not significant]). Patients' attitudes about advance directives and perceived barriers to their use were not different before, shortly after, or distant to receiving information. After receiving information on advance directives, more patients (13% before, 48% shortly after, 37% distant; P < 0.002) and their family members (10% before, 30% shortly after, 20% distant; P < 0.02) completed advance directives.(ABSTRACT TRUNCATED AT 250 WORDS)

Adult↗