Empowerment of the older patient? A randomized, controlled trial to increase discussion and use of advance directives.

OBJECTIVE: To see if an educational intervention directed at older outpatients would lead to increased use or discussion of advance directives and to characterize patients' reasons for not obtaining advance directives. DESIGN: Randomized, controlled trial of an educational intervention versus usual care. SETTING: Outpatient geriatrics clinic of a university hospital. PATIENTS: One hundred and thirty-one non-demented patients over the age of 65 who did not have an advance directive documented in their record at the start of the study. Forty-eight patients were in the trial arm and 83 in the control. MAIN OUTCOME MEASURES: All patients had their charts reexamined 6 months after enrollment to look for the presence of a living will, a durable power of attorney for health care, or a physician's note describing a discussion of advance directives. Trial patients were also re-interviewed to examine their reasons for not executing an advance directive. MAIN RESULTS: Six months after the intervention, only seven of the 48 trial subjects (15%) had an advance directive or note describing discussion of advance directives in their charts compared to eight of the 83 controls (10%) (P greater than 0.05). When asked to give reasons for not obtaining an advance directive, many patients' responses pointed to procrastination as a significant barrier. CONCLUSIONS: Promoting advance directive use is a complicated task. Barriers other than information and access to documents appear to be involved and need to be addressed in future efforts.     

The effect of advance care planning on completion of advance directives and patient satisfaction in people with HIV/AIDS

The effects of advance care planning are poorly understood. The purpose of this study was to evaluate the effect of an advance care planning intervention on the completion of advance directives (ADs) and patient satisfaction. A volunteer sample of persons with HIV/AIDS received advance directive documents, watched an educational video and received individual counselling on completing an advance directive during three face-to-face interviews over approximately six months. The advance care planning intervention was associated with an increase in advance directive completion rates from 16.4% to 40.7% (p = 0.001), but 23.1% of advance directives reported as completed were legally invalid. There was a trend towards decreased overall patient satisfaction with health care (p = 0.07). Advance are planning increases the rate of AD completion but many 'completed' advance directives are legally invalid. Advance care planning did not improve patient satisfaction with health care.     

Advance directives as acts of communication: a randomized controlled trial

BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.     

Discussion as a Factor in Racial Disparity in Advance Directive Completion at Nursing Home Admission

Studies have consistently shown racial disparities in advance directive completion for nursing home residents but have not examined whether this disparity is due to differences in interactions with healthcare providers. This study had two aims: to determine whether the racial disparity in advance directive completion by nursing home residents is related to differences in discussion of treatment restrictions with healthcare providers and to examine whether there is a racial disparity in perceptions of residents' significant others that additional discussions would be helpful. Participants were 2,171 white or black (16% of sample) residents newly admitted to 59 nursing homes. Data were collected from structured interviews with residents' significant others and review of nursing home charts. Questions included whether advance directives were completed, whether treatment restrictions were discussed with the resident or family, and whether more discussion would have been helpful. Frequencies according to race were determined for each question; P -values and logistic regression models were obtained. Black residents were less likely to have completed any advance directives ( P <.001), and they ( P <.001) and their family members ( P <.001) were less likely than whites to have discussed treatment restrictions with healthcare providers. Logistic regression models indicated that disparity in treatment restrictions narrowed when these discussions occurred. Significant others of black residents were more likely than those of white residents to consider further discussion helpful ( P <.001), especially with physicians. Racial disparity in treatment restrictions may be due in part to a difference in discussion with healthcare providers; increasing discussion may narrow this disparity.     

Advance directives in cardiac and pulmonary rehabilitation patients

PURPOSE: Advance directives have been available in parts of the United States for more than 20 years, but research shows that only a small percentage of adults (5-25%) have some form of written advance directive. The purose of this study was to examine the presence of advance directives among persons entering cardiac and pulmonary rehabilitation, and identify characteristics of persons most likely to have advance directives. METHODS: The sample consisted of 336 cardiac patients and 181 pulmonary patients who enrolled in the University of Alabama at Birmingham's Cardiopulmonary Rehabilitation Program between January 1996 and December 1999. As part of the initial program assessment, patients were asked two questions: (1) Do you have a living will? (2) Do you have any advance directives? For the purposes of this study, the two questions were combined to examine the presence of either a living will or other type of advance directive. RESULTS: Results indicate that 25% of both subgroups (cardiac and pulmonary patients) report having written advance directives. Logistic regression analysis indicates that among cardiac patients whites and older persons were more likely to have advance directives. Among pulmonary patients, females and whites were more likely to have advance directives. CONCLUSIONS: These results indicate that only a minority of cardiopulmonary rehabilitation patients have advance directives upon entry into the program, and that the prevalence differs among gender, racial, and age groups. Cardiac and pulmonary rehabilitation programs may be valuable sites for educating patients about advance directives and efforts by rehabilitation personnel may increase the prevalence of advance directives among patients.     

Controlling death: the false promise of advance directives

Advance directives promise patients a say in their future care but actually have had little effect. Many experts blame problems with completion and implementation, but the advance directive concept itself may be fundamentally flawed. Advance directives simply presuppose more control over future care than is realistic. Medical crises cannot be predicted in detail, making most prior instructions difficult to adapt, irrelevant, or even misleading. Furthermore, many proxies either do not know patients' wishes or do not pursue those wishes effectively. Thus, unexpected problems arise often to defeat advance directives, as the case in this paper illustrates. Because advance directives offer only limited benefit, advance care planning should emphasize not the completion of directives but the emotional preparation of patients and families for future crises. The existentialist Albert Camus might suggest that physicians should warn patients and families that momentous, unforeseeable decisions lie ahead. Then, when the crisis hits, physicians should provide guidance; should help make decisions despite the inevitable uncertainties; should share responsibility for those decisions; and, above all, should courageously see patients and families through the fearsome experience of dying.     

Effects of advance care education in cardiovascular rehabilitation programs: a prospective randomized study.

PURPOSE: To determine the effect of advance care education provided to patients enrolled in cardiovascular rehabilitation (CVR) programs and assess patients' acceptance of the educational program. METHODS: In a multicenter, prospective, randomized study, the authors administered two questionnaires 6 months apart to 284 patients enrolled in 14 CVR programs in 11 states. An educational group (99 subjects) participated in educational programs related to advance care planning and received advance directive forms after completing the first questionnaires; 185 subjects served as controls. Primary outcomes were completion of patient-physician discussions of end-of-life issues and patient confidence that their end-of-life wishes were understood by their physicians. Secondary outcomes were completion of formal advance directives and patient acceptance of the educational program. RESULTS: Both the educational and control groups demonstrated a larger proportion of patients at the end of the study, compared with the amount at the beginning of the study, who had completed living wills, durable powers of attorney for healthcare, and discussions with their physicians about advance directives and life support care. These outcomes were not observed more commonly after the educational intervention. Neither groups gained confidence, however, that their physicians understood their end-of-life wishes. Only 8.6% of patients had a negative response to the educational program. CONCLUSIONS: Advance care education is well received by patients enrolled in CVR programs. Enrollment in CVR promotes advance care planning to a small but measurable degree CVR rehabilitation programs appear to be acceptable sites for advance care planning but further research is needed to develop effective educational interventions.     

Promoting advance directives among elderly primary care patients

OBJECTIVE: To determine efficient ways of promoting advance directives among heterogeneous populations of elderly ambulatory patients. DESIGN: One-year quasi-experimental trial. SETTING: Five suburban and urban health centers in one region of a large managed care organization. One additional suburban center served as a control site. PARTICIPANTS: Individuals ages 65 and older (N= 2,120) who were continuously enrolled and had a health maintenance visit with their primary care provider during the study year. INTERVENTION: Physician education (oral and written) and physician and patient prompts to discuss advance directives. MAIN RESULTS: Sixty-six (7.8%) of patients at the intervention centers completed new advance directives, versus 9 of 1,277 (<1%) at the comparison center (P <.001). Patients 75 and older were twice as likely (odds ratio [OR], 2.0; 95% confidence limits [CL], 1.2 to 3.3) as those 65 to 74 to file a new advance directive, and the odds were twice as great (OR, 2.6; 95% CL, 1.4 to 4.6) at centers serving communities with median household income over the state median. Gender, recent hospitalization, emergency room visits, and number of chronic conditions were not related to making new directives nor was predominant ethnicity of the center community (African-American versus white). Adjusted for these factors, the intervention resulted in a 20-fold increase (95% CL, 10.4 to 47.8) in the odds of creating a new advance directive. Doctors reported barriers of time and unwillingness to press discussions with patients. CONCLUSIONS: A replicable intervention largely targeting doctors achieved a modest increase in advance directives among elderly ambulatory patients. Future interventions may need to target lower-income patients, "younger" elderly, and more specifically address doctors' attitudes and comfort discussing advance directives.     

Life‐Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?

OBJECTIVES: To assess whether older physicians have discussed their preferences for medical care at the end of life with their physicians, whether they have established an advance directive, and what life-sustaining treatment they wish in the event of incapacity to make these decisions for themselves. DESIGN: Mailed survey to a cohort of physicians. SETTING: Physicians who were medical students at the Johns Hopkins University in graduating classes from 1946 to 1964. PARTICIPANTS: Physicians who completed the advance directive questionnaire (mean age 68). MEASUREMENTS: Questionnaires were sent out to known surviving physicians of the Precursors Study, an on-going study that began in 1946, asking physicians about their preferences for life-sustaining treatments. RESULTS: Of 999 physicians who were sent the survey, 765 (77%) responded. Forty-six percent of the physicians felt that their own doctors were unaware of their treatment preferences or were not sure, and of these respondents, 59% had no intention of discussing their wishes with their doctors within the next year. In contrast, 89% thought their families were probably or definitely aware of their preferences. Sixty-four percent reported that they had established an advance directive. Compared with physicians without advance directives, physicians who established an advance directive were more likely to believe that their doctors (odds ratio (OR) = 3.42, 95% confidence interval (CI) = 2.49-4.69) or family members (OR = 9.58, 95% CI = 5.33-17.23) were aware of their preferences for end-of-life care and were more likely to refuse treatments than those without advance directives. CONCLUSION: This survey of physicians calls attention to the gap between preferences for medical care at the end of life and expressing wishes to others through discussion and advance directives, even among physicians.     

A Comparison of Two Interventions to Increase Completion of Advance Directives

The purpose of this study was to evaluate two different interventions on their ability to promote advance directive completion. Specifically, an intervention based on protection motivation theory, which involved presenting threatening information and coping information, was compared with a general healthy aging intervention, which spent little time actually discussing advance directives. Participants were obtained from a community sample involving church groups and senior centers. Participants were assigned to one of the two interventions. Participants were then asked several questions, including whether or not they had completed an advance directive at 3-month follow-up. Results indicated that those who participated in the healthy aging intervention completed more advance directives than did those in the protection motivation theory intervention. These results are consistent with the tenants of socioemotional selectivity theory, which states that older adults are focused more on maintaining their well-being and are more likely to remember positive information than negative. Advance directive interventions should take into account the developmental stage of older adults and should provide materials that are consistent with their goals and values at this life stage. In this way, advance directive interventions could become more effective at producing more completed documents.     

Defining features of advance directives in law and clinical practice

In the > 30 years since the New Jersey Supreme Court's seminal opinion in the case of Karen Ann Quinlan, all 50 states and the District of Columbia have enacted legislation to recognize the legal right of competent adults to write advance directives. The purpose of advance directives is to provide direction for health-care decisions near the end of life, when the ravages of illness, disease, or injury have taken the ability to decide for one's self. This article reviews the defining features of advance directives and the governing law, discusses some common practical concerns regarding the use and effectiveness of advance directives, and identifies several significant ethical-legal challenges for honoring advance directives at the bedside. With a primary focus on the health-care proxy, the anatomy of advance directives is analyzed under four general rubrics: formal requirements, decisional capacity and when the directive takes effect, rights and responsibilities of proxies and health-care providers, and the scope and limitations of decisions to forego life-sustaining treatment. There is much common ground among state laws, but particular legal provisions may vary from state to state. Physicians, nurses, social workers, and other health-care professionals should be familiar with the law of their home state.     

Resuscitating advance directives

Advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Requirements for witnessing or notarizing advance directives make it difficult for patients to complete a written directive during a physician visit. State laws that establish a hierarchy of family surrogates for incompetent patients who have not appointed a proxy are inflexible and may not apply to common clinical situations. Advance directives would be more useful if they emphasized discussing end-of-life care with physicians rather than completing a legal document. State laws should be revised to encourage patients to discuss advance directives with physicians and to complete them during an office visit. Such patient-physician discussions about end-of-life care can lead to more informed patient decisions. Procedures for written advance directives should be simplified. Patients should be able to designate health care proxies through oral statements to physicians. These reforms will encourage discussions between patients and physicians about advance directives and may lead to more informed decisions near the end of life.     

An electronic medical record intervention increased nursing home advance directive orders and documentation

OBJECTIVES: To develop an electronic medical record intervention to improve documentation of patient preferences about life-sustaining care, detail of resuscitation and treatment-limiting orders, and concordance between these orders and patient preferences. DESIGN: Prospective before-after intervention trial. SETTING: Veterans Affairs nursing home with an electronic medical record for all clinical information, including clinician orders. PARTICIPANTS: All 224 nursing home admissions from May 1 to October 31, 2004. MEASUREMENTS: Completion of an advance directive discussion note by the primary clinician, clinician orders about resuscitation and other life-sustaining treatments, and concordance between these orders and documented patient preferences. INTERVENTION: The electronic medical record was modified so that an admission order would specify resuscitation status. Additionally, the intervention alerted the primary clinician to complete a templated advance directive discussion note for documentation of life-sustaining treatment preferences. RESULTS: Primary clinicians completed an advance directive discussion note for five of 117 (4%) admissions pre-intervention and 67 of 107 (63%) admissions post-intervention (P<.001). In multivariate analysis, the intervention was independently associated with advance directive discussion note completion (odds ratio=42, 95% confidence interval=15-120). Of patients who preferred do-not-resuscitate (DNR) status, a DNR order was written for 86% pre-intervention versus 98% post-intervention (P=.07); orders to limit other life-sustaining treatments were written for 16% and 40%, respectively (P=.01). CONCLUSIONS: A targeted electronic medical record intervention increased completion of advance directive discussion notes in seriously ill patients. For patients who preferred DNR status, the intervention also increased the frequency of DNR orders and of orders to limit other life-sustaining treatments.     

Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives

OBJECTIVES: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes. DESIGN: Survey of elderly care physicians and additional qualitative interviews with a selection of elderly care physicians and relatives of people with dementia who had an advance directive for euthanasia. SETTING: Dutch nursing home practice. PARTICIPANTS: Four hundred thirty‐four elderly care physicians completed the general part of the questionnaire; 110 physicians provided case histories. Interviews were conducted with 11 physicians and eight relatives. MEASUREMENTS: The questionnaire contained general questions about the incidence of advance directives for euthanasia in people with dementia. A second part involved questions about the most recent case of a person with dementia and an advance directive for euthanasia who had died. The interviews with elderly care physicians and relatives focused on further exploration of the decision‐making process regarding adherence to the advance directive for euthanasia. RESULTS: Despite law‐based possibilities, advance directives for euthanasia of people with dementia were rarely adhered to, although they seem to have a supportive role in setting limitations on life‐sustaining treatments. Elderly care physicians and relatives were found to be reluctant to adhere to advance directives for euthanasia. Not being able to engage in meaningful communication played a crucial role in this reluctance. CONCLUSION: Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end‐of‐life care of people with advanced dementia is limited. Communication with the patient is essential for elderly care physicians to consider adherence to an advance directive for euthanasia of a person with dementia.     

Recent trends in advance directives at nursing home admission and one year after admission

PURPOSE: Advance directives are important planning and decision-making tools for individuals in nursing homes. DESIGN AND METHODS: By using the nursing facility Minimum Data Set, we examined the prevalence of advance directives at admission and 12 months post-admission. RESULTS: The prevalence of having any advance directive at admission declined slightly from 2000 to 2004, whereas the prevalence of having any advanced directive at 12 months after admission increased slightly during the same period. Compared with admissions, residents at 12 months post-admission were more likely to have their decisions made by family members and to have advance directives of any type. IMPLICATIONS: The results suggest that greater use of advance directives in nursing homes may depend on additional information and support from nursing facility personnel and the health and social services professionals who are in contact with individuals moving toward nursing home admission, as well as those who remain in facilities over time.     

Nursing home resident use of care directives.

BACKGROUND: The Patient Self-Determination Act of 1991 requires that nursing homes reimbursed by Medicare or Medicaid inform all residents upon admission of their rights to enact care directives in the event of terminal illness. This study investigated the relationship between care directive use and resident functional status. METHODS: We analyzed a version of the Minimum Data Set (MDS+) from a single state. We selected residents who were admitted to a nursing home in the first half of 1993 and followed them in the nursing home through the end of 1994. We created logistic models to examine independent correlates associated with having an advance directive or a do-not-resuscitate (DNR) order on admission. We then created similar logistic models to examine independent correlates associated with writing an advance directive or DNR order subsequent to admission. RESULTS: Of the 2,780 residents, 11% (292) had advance directives and 17% (466) had DNR orders upon admission. Of those without care directives upon admission, 6% (143) subsequently had an advance directive and 15% (339) subsequently had a DNR order. Cross-sectionally, older individuals and whites were more likely to have a care directive. Having poor cognitive and physical function was associated with having a DNR order upon admission. Longitudinally, longer stayers and whites were more likely to have an advance directive. Residents who lost physical function were more likely to have an advance directive and those who lost cognitive function were more likely to have a DNR order. CONCLUSIONS: Care directive use is influenced by a number of sociodemographic and functional characteristics.     

The Patient Self-Determination Act and the future of advance directives

Living wills and other advance directives currently play a limited role in medical decision making. A new federal law, the Patient Self-Determination Act, will require health care providers in hospitals, nursing homes, and other facilities to inquire about the presence of advance directives, to record patient preferences in the medical record, and to develop institutional policies regarding the implementation of these directives. Unfortunately, the law does little to promote discussion or preparation of advance directives before hospitalization. Additional efforts to promote the use of advance directives can take place in the outpatient medical care system, in attorneys' offices, or through health insurers. Because most people have not yet prepared an advance directive, we suggest that institutions develop treatment policies for situations in which the wishes of patients who lack decisional capacity are not known. These policies should be designed to promote the patients' best interests, as defined by the consensus of the institutions' staff and members of the surrounding community.     

Advance Directives in Hospice Healthcare Providers: A Clinical Challenge

Background

On a daily basis, healthcare providers, especially those dealing with terminally ill patients, such as hospice workers, witness how advance directives help ensure the wishes of patients. They also witness the deleterious consequences when patients fail to document the care they desire at their end of life. To the best of our knowledge there are no data concerning the prevalence of advance directives among hospice healthcare providers. We therefore explored the prevalence and factors influencing completion rates in a survey of hospice healthcare providers.

Increasing the use of advance directives in medical outpatients

Objective

We studied whether a simple educational intervention would increase patient completion of advance directives and discussions on end-of-life issues.

Design

Randomized, controlled trial.

Setting

Outpatient clinic of a teaching hospital.

Subjects

One hundred eighty-seven outpatients of a primary care internal medicine clinic.

Intervention

Study subjects attended a 1-hour interactive seminar and received an informational pamphlet and advance directive forms. Control subjects received by mail the pamphlet and forms only.

Measurements and main results

Completion of the advance directive was the main measurement. There were no significant differences in baseline characteristics of either group. Follow-up at 1 month revealed advance directive completion in 38% of study versus 24% of control subjects (p=.04), and discussions on advance planning in 73% of study versus 57% of control subjects (p=.02). Patients most likely to complete the documents were white, married, or attendees at the educational seminar.

Conclusions

Interactive group seminars for medical outpatients increased discussions and use of written advance directives.     

High rates of advance care planning in New York City's elderly population

BACKGROUND: Previous studies have demonstrated low rates of advance care planning (ACP), particularly among nonwhite populations, raising questions about the generalizability of this decision-making process. OBJECTIVE: To explore factors that may influence patients' willingness to engage in ACP. DESIGN: Survey. SETTING: Thirty-four randomly selected New York City senior centers. PARTICIPANTS: A total of 700 African American (n = 239), Hispanic (n = 237), and white (n = 224) adults 60 years and older. INTERVENTION: Participants were administered a 51-item survey that assessed attitudes, beliefs, and practices regarding ACP. MAIN OUTCOME MEASURES: Attitudes and beliefs about physicians' trustworthiness, fatalism, beliefs about surrogate decision making, and comfort discussing end-of-life medical care; factors associated with health care proxy completion; and health care proxy completion rates. RESULTS: More than one third of the participants had completed a health care proxy. There were no significant differences in completion rates across the 3 ethnic groups. Respondents who had a primary care physician (odds ratio [OR], 2.0; 95% confidence interval [CI], 1.3-3.2), were more knowledgeable about advance directives (OR, 2.0; 95% CI, 1.4-2.9), or had seen a friend or family member use a mechanical ventilator (OR, 1.5; 95% CI, 1.02-2.1) were significantly more likely to have designated a health care proxy. Respondents who were only comfortable discussing ACP if the discussion was initiated by the physician (OR, 0.6; 95% CI, 0.0-0.8) were significantly less likely to have completed a health care proxy. CONCLUSIONS: African American, Hispanic, and white community-dwelling, older adults had similarly high rates of advance directive completion. The primary predictors of advance directive completion involved modifiable factors such as established primary care physicians, personal experience with mechanical ventilation, knowledge about the process of ACP, and physicians' willingness to effectively initiate such discussions. Some of the racial/ethnic differences in desire for collective family-based decision making that were observed in this study have implications for the evolution of ACP policy that respects and operationalizes these preferences.