Predictors of advance directive restrictiveness and compliance with institutional policy in a long-term-care facility.

OBJECTIVE: To ascertain factors influencing the level of advance directives selected by nursing home residents or surrogates and the time delay to documentation of these choices in the medical record after implementation of a facility-wide policy. DESIGN: Longitudinal cohort study of nursing home residents followed from date of advance directive policy initiation or time of admission for a maximum of 21 months from study commencement. SETTING: A 315-bed multilevel nursing home. PARTICIPANTS: Four hundred twenty-four nursing home residents (mean age 85, 74.9% female, 96.1% white). OUTCOME MEASURES: Level of advance directive status chosen--full code, do not resuscitate (DNR) or palliative care only--and date documented in the medical record. RESULTS: Factors predictive of restricted advance directives (DNR or palliative care) included age greater than 85 years (P = 0.025), documented use of a surrogate decision maker (P = 0.001), low physical function (P less than 0.001), low cognitive function (P less than 0.001), and having a nursing home-employed physician (P = 0.001). These results were confirmed using logistic regression models. Median time to directive documentation decreased from 54 days for residents admitted in the first quarter to 1 day for residents admitted in the fourth quarter of the year following initiation of an advance directive policy. CONCLUSION: In logistic models, nursing home-employed physicians were more likely to write restricted advance directive orders than community-based physicians even after controlling for resident age, cognitive status, and physical function. In addition, implementation of a formal nursing home advance directive policy can shorten time to physician documentation of resident advance directive status.     

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.     

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.     

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.     

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.     

Content of advance directives for individuals with advanced dementia

OBJECTIVE: To examine how people with end-stage dementia have conveyed their wishes for end-of-life care in advance directives. METHOD: The documents of 123 residents of three Maryland nursing homes, all with end-stage dementia, were reviewed. RESULTS: More years of education and White race were significantly associated with having an advance directive. With the exceptions of comfort care and pain treatment, advance directives were used primarily to restrict, not request, many forms of care at the end of life. Decisions about care for end-stage conditions such as Alzheimer's dementia are less often addressed in these documents than for terminal conditions and persistent vegetative state. DISCUSSION: For advance directives to better reflect a person's wishes, discussions with individuals and families about advance directives should include a range of care issues in the settings of terminal illness, persistent vegetative state or end-stage illness. These documents should be reviewed periodically to make certain that they convey accurately the person's treatment preferences.     

Difficult end-of-life treatment decisions: do other factors trump advance directives?

BACKGROUND: Advance directives are widely promoted as a means to plan for patients' decisional incapacity, yet there is little evidence of their effectiveness. We devised a study to assess physicians' compliance with hypothetical advance directives and further examine their clinical reasoning. METHODS: The study consisted of an analysis of a mailed written survey containing 6 hypothetical cases of seriously ill patients. Each case contained an explicit advance directive with potential conflict between the directive and (1) prognosis, (2) wishes of family or friends, or (3) quality of life. Data were collected on the clinical treatment decisions made by physicians and the reasons for those decisions. Study participants were all internal medicine faculty and resident physicians from a single academic institution. RESULTS: A total of 47% analyzable surveys (117/250) were returned. Decisions by faculty and residents were not consistent with the advance directive in 65% of cases. This inconsistency was similar for faculty and residents (68% and 61%, respectively; P>.05). When physicians made decisions inconsistent with the advance directive, they were more likely to list reasons other than the directive for their decisions (89%; P<.001). CONCLUSIONS: Internists frequently made treatment decisions that were not consistent with an explicit advance directive. In difficult clinical situations, internists appear to consider other factors such as prognosis, perceived quality of life, and the wishes of family or friends as more determinative than the directive. Future work needs to explore the generalizability of these findings and examine how strictly patients desire their advance directives to be followed.     

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.     

Using the family covenant in planning end-of-life care: obligations and promises of patients,families, and physicians

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members--as agreed to by the patient and those family members--into the medical care dialogue. The family covenant formulates advance directives in conversation with family members and with the assistance of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient's preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation.     

Differences in presenting advance directives in the chart,in the minimum data set,and through the staff's perceptions

PURPOSE: Decisions concerning end-of-life care depend on information contained in advance directives that are documented in residents' charts in the nursing home. The availability of that information depends on the quality of the chart and on the location of the information in the chart. No research was found that compared directives by the manner in which they are collected and summarized in the chart. The goal of the proposed study was to clarify how advance directives are summarized in the patient's record and to clarify how physicians perceive the same advance directives and formal orders. DESIGN AND METHODS: The study involved 122 elderly persons who reside in one large (587 beds) nursing home. The authors collected data regarding the advance directives from three sources-Minimum Data Set (MDS), the front cover of the resident's chart, and from inside the chart. RESULTS: The rates of documented advance directives found in this study are higher than those reported in the literature. Agreement rates between sources varied as a function of which sources were compared, as well as on the basis of which directive was examined. More specifically, the authors found higher rates of agreement between the information inside the chart and on the cover of the chart than between the MDS and the other two sources. IMPLICATIONS: The reasons for discrepancies may lie in the different functions and procedures pertaining to these source documents.     

Improving advance directives for healthy older people

The quality and quantity of advance directives for healthy older people need to increase. Quality will improve with literal interpretations of do-not-resuscitate orders and more comprehensive directives. Changing the term "DNR" to "No ACLS (Advanced Cardiac Life Support)" should discourage health-care providers from subsuming other limitations under the directive to withhold resuscitation. Other aggressive medical and surgical interventions should be prospectively considered in addition to resuscitation. The quantity of advance directives will increase when physicians feel motivated to devote time and expertise to thorough discussions of advance directives. Although education and legislation will motivate physicians to some extent, their roles are limited. Fair reimbursement for this primary-care service is the most effective motive. The initial investment by Medicare may save large sums in the long run by reducing expensive, undesired care for older people.     

Precipitants of emergency room visits and acute hospitalization in short-stay medicare nursing home residents

OBJECTIVES: To determine what precipitates rehospitalization for residents who become acutely ill in the first 90 days of a nursing home (NH) admission. DESIGN: NH medical record review comparing acutely ill Medicare admissions transferred back to hospital with those not transferred. SETTING: Sixty skilled nursing facilities in five states during 1994. PARTICIPANTS: Six hundred thirty-six residents who became acutely ill with urinary tract infection (UTI), pneumonia, or congestive heart failure (CHF) during the first 90 days of their nursing home admission were identified from 2,414 random NH Medicare admissions, excluding those with orders not to be hospitalized. MEASUREMENTS: Diagnosis, age, gender, advance care directives, nursing shift during which problem occurred, comorbidity, symptoms, and signs of acutely ill NH residents transferred to the hospital or emergency department were compared with those not transferred. RESULTS: Rates of hospitalization varied markedly by acute illness: 11 of residents with UTI, 46 with pneumonia, and 58 with an exacerbation of CHF (P< .001). In stratified multivariate analysis, older age decreased the odds of rehospitalization only for CHF. Male gender increased odds of hospitalization for pneumonia (odds ratio (OR) = 2.94) and decreased odds of hospitalization for CHF (OR = 0.28). Do not resuscitate orders were negatively associated with hospitalization only for pneumonia (OR = 0.23), whereas weekend and evening/night shifts increased odds of hospitalization for UTI. Each illness had its own set of symptoms, signs, and comorbidities associated with hospitalization.CONCLUSIONS: Whether an acutely ill NH Medicare patient was rehospitalized depended primarily on the particular illness. The relative importance of age, gender, shift, advance care directives, symptom severity, signs, and comorbid illnesses varied by diagnosis.     

The effect of discussions about advance directives on patients’ satisfaction with primary care

BACKGROUND: Discussions of end-of-life care should be held prior to acute, disabling events. Many barriers to having such discussions during primary care exist. These barriers include time constraints, communication difficulties, and perhaps physicians' anxiety that patients might react negatively to such discussions. OBJECTIVE: To assess the impact of discussions of advance directives on patients' satisfaction with their primary care physicians and outpatient visits. DESIGN: Prospective cohort study of patients enrolled in a randomized, controlled trial of the use of computers to remind primary care physicians to discuss advance directives with their elderly, chronically ill patients. SETTING: Academic primary care general internal medicine practice affiliated with an urban teaching hospital. PARTICIPANTS: Six hundred eighty-six patients who were at least 75 years old, or at least 50 years old with serious underlying disease, and their 87 primary care physicians (57 residents, 30 faculty general internists) participated in the study. MEASUREMENTS AND MAIN RESULTS: We assessed patients' satisfaction with their primary care physicians and visits via interviews held in the waiting room after completed visits. Controlling for satisfaction at enrollment and physician, patient, and visit factors, discussing advance directives was associated with greater satisfaction with the physician (P =.052). At follow-up, the strongest predictor of satisfaction with the primary care visit was having previously discussed advance directives with that physician (P =.004), with a trend towards greater visit satisfaction when discussions were held during that visit (P =.069). The percentage of patients scoring a visit as "excellent" increased from 34% for visits without prior advance directive discussions to 51% for visits with such discussions (P =.003). CONCLUSIONS: Elderly patients with chronic illnesses were more satisfied with their primary care physicians and outpatient visits when advanced directives were discussed. The improvement in visit satisfaction was substantial and persistent. This should encourage physicians to initiate such discussions to overcome communication barriers might result in reduced patient satisfaction levels.     

Resident approaches to advance care planning on the day of hospital admission

BACKGROUND: Advance care planning is the process of establishing a patient's goals and preferences for future care. Previous research has demonstrated a need to improve patient-physician communication around advance care planning. A critical time for advance care planning conversations is the day of admission to the hospital. METHODS: A survey of internal medicine residents was administered at Duke University Medical Center and the Brigham and Women's Hospital, 2 major academic teaching centers. Residents were questioned about their approaches to advance care planning on their last on-call admitting day. RESULTS: Of 347 residents solicited, 292 (84.1%) participated in the survey. Residents reported that they established preferences for cardiopulmonary resuscitation (CPR) with 70.5% of patients, established a health care proxy with 33.7% of patients, discussed goals and values concerning end-of-life care with 32.0% of patients, and asked 35.6% of patients if they had an advance directive. Although 89.0% of residents had observed an advance care planning discussion model, only 66.4% had received teaching and 36.6% had received feedback about advance care planning conversations. In multivariable analysis, having received feedback about advance care planning conversations was associated with a higher percentage of conversations about health care proxy and goals and values related to the end of life. CONCLUSIONS: Residents discuss patient preferences for CPR on the day of admission with most patients. Preparing residents, particularly through feedback, may improve communication around other elements of advance care planning.     

Effect of an educational program on medical students’ conversations with patients about advance directives

Advance directives, such as the durable power of attorney for health care (DPAHC), help patients and physicians make end-of-life health care decisions. Medical education should prepare student physicians to be knowledgeable about and comfortable with discussing advance directives. The authors developed an educational module for the third-year medical school curriculum and conducted a randomized trial to evaluate in students its effect on various outcome measures regarding the DPAHC. Over a six-week period, students who received written material about the DPAHC and a two-hour seminar significantly increased knowledge about and reported increased skill, comfort, and experience with the DPAHC.     

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.     

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.     

Do-not-resuscitate practice,guidelines and policies in long-term care in Ontario: results of a survey

We used a survey to determine the prevalence of do-not-resuscitate (DNR) guidelines and protocols, and opinions related to cardiopulmonary resuscitation (CPR) in facilities that provide long-term care (LTC) in Ontario. Questionnaires completed by 357 of 474 facilities providing LTC, revealed that most have written DNR policies. Over half inform residents about the policy on admission, and a third later on, with most indicating DNR status on the chart. Over half the institutions can provide CPR, mostly basic cardiac life support. Most institutions rely on emergency ambulance services to treat cardiac arrests. In the absence of a DNR order, almost half will perform CPR, and a quarter have a protocol to deal with this circumstance. Most respondents indicated that staff, families and residents would welcome a protocol to deal with absent DNR orders in cardiac arrests. Most believe that staff, families and residents would welcome DNR as the basic policy, with CPR as the exception. There is a high awareness in facilities that provide LTC of the limits of CPR in the elderly. Without specific legislation, most facilities have policies and protocols, but there are inconsistencies across Ontario.     

Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families

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.