Knowledge and attitudes of health care social workers regarding advance directives

This cross sectional investigation describes the knowledge and attitudes of health care social workers regarding advance directives and explores factors that influence them. As major contributors to quality patient care, the level of knowledge and attitudes held by health care social workers regarding health care policy mandates are important. Mail survey methods were used to collect data from a systematic random sample (n = 324) of social workers throughout one mid-western state. Results indicate that the majority of health care social workers have high to moderate levels of knowledge about advance directives and hold positive attitudes regarding the policy. Social workers with more experience working with the elderly had higher levels of knowledge. Those employed in nursing homes and hospice settings had more positive attitudes than did those working in other health care facilities.     

Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis

ObjectiveTo systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.DesignSystematic review and meta-analyses.Data SourcesMedline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.Study SelectionRandomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.Data Extraction and SynthesisFifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: ‘advance directives’ and ‘communication.’Main Outcomes and MeasuresPrimary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.ResultsInterventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication.ConclusionsACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care.     

End-of-Life Care Issues: A Personal,Economic, Public Policy,and Public Health Crisis

Advance directive documents are free, legal, and readily available, yet too few Americans have completed one. Initiating discussions about death is challenging, but progress in medical technology, which leads to increasingly complex medical care choices, makes this imperative.Advance directives help manage decision-making during medical crises and end-of-life care. They allow personalized care according to individual values and a likely reduction in end-of-life health care costs.We argue that advance directives should be part of the public health policy agenda and health reform.IS END-OF-LIFE CARE A MATTER of personal values, economics, public policy, or a looming public health crisis? Actually, it is all of these. But when we consider the population’s demographic shift to older adults, which is associated with chronic illness and multiple comorbidities, the enormous health care costs consumed in end-of-life care, and complex ethical issues, it is time for the public health community to put this issue squarely on its agenda. Increasing the rate of completion of advance directives is a key step, and specific policy strategies can be identified to accomplish this objective.Advance directives were created by federal and state law to ensure autonomy of patients who eventually become unable to make decisions for themselves.1,2 Advance directives are free, legal, and straightforward forms that can be completed in a few minutes. Typically, advance directives address several areas regarding end-of-life care when a person becomes unable to make medical decisions for himself or herself. First, a person defines the amount and kind of care he or she might receive under various medical circumstances. Second, a person designates a health care agent to make medical decisions when the person can no longer do so. Third, advance directives may also address other end-of-life care issues including organ donation, whole body donation to medical schools, funeral and burial arrangements, legacy recordings for posterity, and—in 3 states (Oregon, Washington, and Montana)—assisted dying.     

Managed death in a PACE: pathways in present and advance directives

OBJECTIVES: To test the effect of an innovative method of documenting present and advance health care wishes on the rates of completion and the qualitative choices of health care wishes. DESIGN: Interventional prospective cohort (pre- and post-). SETTING: Program for All-inclusive Care of the Elderly (PACE) site in St. Louis, MO. PARTICIPANTS: Enrolled PACE participants. INTERVENTION: A documentation tool that captures both present and advance directives in a framework of "pathways," blending goals of care with typical procedure-oriented directives. MEASUREMENTS: Data from medical records to calculate rates of health care wishes (HCW) completion, proportions of qualitative choices, and compliance with wishes at death. RESULTS: Baseline prevalences of present directives (PD) and advance directives (AD) were 77% and 36%, respectively, while Do Not Resuscitate (DNR) wishes were documented in 48% of PD and 26% of AD. After implementation of the Pathways Tool, completion rates increased to 99% for both PD and AD. Documented DNR wishes decreased to 38% of PD and increased to 66% of AD. Qualitative choices for care (Longevity vs Function vs Palliation) changed toward a palliation pathway for AD (from 9% to 53%). The rate of dying at home increased from 24% to 65%. Compliance with end-of-life wishes increased from 72% to 96%. These are statistically significant. CONCLUSION: Introduction of a novel pathways method of documenting HCW in a PACE site was associated with increased completion, preferences toward less invasive levels of care at life's end, and increased compliance with participants' wishes and deaths at home. Future research to validate the methodology employed in this intervention should be conducted in other long-term care settings.     

Economic,political and ethnic influences on end-of-life decision-making: a decade in review

Implementation of the Patient Self Determination Act (PSDA) a decade ago has been followed by considerable research examining usage of advance directives among patient populations as well as among health care professionals. This article summarizes the history of end-of-life medical treatment options and provides a discussion of critical economic, political, and legal events that preceded passage of the PSDA. A review of the literature during the decade that followed is presented including research exploring ethnic factors in the completion of advance directives. Barriers to completing advance directives by minority populations are discussed and considerations for policy makers are provided.     

Advance directives: the experience of health care professionals across the continuum of care.

This study explored the perceptions of health care providers across the continuum of care as to how effective advance directive arrangements were in assuring compliance with the patients' wishes, as well as their overall satisfaction levels with the process. The health care providers who responded to the survey indicated high levels of overall satisfaction with advance directives, despite low patient completion rates and, most significantly, low confidence levels that surrogate decision making accurately reflected the patient's wishes. A secondary analysis compared the perceptions of health care providers with consumers' reasons for failing to complete advance directives. The need for further education was perceived as a primary need by the health care professionals but not by the consumers. Recommendations for policy initiatives and further research are then presented.     

Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life

African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans.     

Questions of limits arise over advance directives

The Patient Self-Determination Act (PSDA) is off and running with very little in the way of complaints from hospitals to date. Word obtained from a few hospitals contacted by Hospital Ethics indicates that, as expected, patients are responsive to rather than frightened by conversations initiated by health care personnel regarding advance directives. Some time will pass before the impact of the PSDA will really be known, in particular, whether more patients will have actually signed advance directives, and whether they will have been followed in the event they are called up for clinical decision making. In the professional literature, however, the place of advance directives--their form and function--in the hospital setting is receiving careful scrutiny, and discussions of when and why advance directives might or should be limited are eliciting suggestions of how the process might be improved. Summaries of these discussions follow.     

Predictors of Quality-of-Care Processes in Geriatric Assessment Units: Toward a Better Organizational Framework

ObjectivesTo identify the structural and patient characteristics associated with better care processes in older vulnerable hospitalized patients.DesignRetrospective study.SettingForty-four Geriatric Assessment Units (GAU).ParticipantsPatients aged 65 and older who were admitted to a GAU for a fall with trauma.MeasurementsThree care processes (comprehensiveness, informational continuity, completion of advance health care directives) assessed through chart audit; 14 patient- and 23 GAU-related characteristics obtained from hospitalization records, national databases, and GAU managers.ResultsA total of 877 hospitalization records were included. Final models were based on multilevel modeling using stepwise variable selection. Strongest predictors of better comprehensiveness were longer hospital length of stay (LOS), higher clinical complexity (eg, higher mortality risk), and having a geriatrician as attending physician. Comprehensiveness score increased sharply up to 3 weeks LOS and then tended to plateau. Better informational continuity was associated with more comprehensive care, higher risk of mortality, acute rather than rehabilitation care, communication with community health care professionals within 48 hours after admission, and a target LOS of 3 weeks or longer. The completion of advance directives was more likely in the presence of advanced age, higher risk of mortality, cognitive impairment, discharge to another care facility, longer LOS, university-affiliated institution, and nonurban location.ConclusionIn GAUs, quality-of-care processes are related to both structural and patient characteristics. Our results pointed toward an organizational framework that may help to streamline the geriatric units and better use resources, notably by narrowing the admission criteria, targeting a proper LOS, improving communication with community organizations, and making systematic completion of advance directives.     

Willingness to complete advance directives among low‐income older adults living in the USA

This study explored low‐income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision‐makers in the event that they cannot make their own decisions about end‐of‐life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low‐income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross‐sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self‐rated health, attitudes towards advance decision‐making and social support. Participants with a poorer health status (OR = 1.43, 95% CI = 1.07–1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes (OR = 1.18, 95% CI = 1.00–1.39) and greater social support (OR = 1.07, 95% CI = 1.00–1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end‐of‐life care planning. Healthcare professionals can be a source of support assisting older adults in planning end‐of‐life care. Initiating ongoing communication regarding personal value and preference for end‐of‐life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary.     

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.     

Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making

Ethnicity has been found to explain some differences across ethnic groups regarding end-of-life care choices. African Americans appear to be less likely to know about advance directives and to complete them. Five community-based focus groups, consisting of 27 African Americans, were convened to explore their perspectives of end-of-life care planning and decision making. Content analysis revealed six themes: death is not an option, religiosity and end-of-life care planning is a paradox, the health care system is a microcosm of societal and historical events, a "trusted" family member or friend is the contract for life-and-death options, ethnically relevant initiatives are essential to increase advance directives participation, and people are people. These themes serve to guide health care professionals in minimizing actions that increase African Americans' mistrust of the health care system not only in end-of-life situations but also in all of health care-related interactions.     

Urban/Rural Differences in Decision Making and the Use of Advance Directives Among Nursing Home Residents at Admission

CONTEXT: Advance directives promote patient autonomy and encourage greater awareness of final care options while reducing physician and family uncertainty regarding patient preferences. PURPOSE: To investigate differences in decision making authority and the use of advance directives among nursing home residents admitted from urban and rural areas. METHODS: A total of 551,208 admission assessments in the Minimum Data Set were analyzed for all residents admitted to a nursing facility in 2001. Using the Rural Urban Commuting Areas (RUCA) methodology and ZIP code of primary residence before admission, these residents were classified into 4 urban/rural areas. FINDINGS: Residents from rural areas were significantly more likely to have executed a durable power of attorney for health care or for financial decisions than residents admitted from the other areas, with the largest differences observed between residents admitted from urban and rural areas. Almost 6 residents in 10 from urban areas had no advance directives in place at admission compared with only 4 residents in 10 admitted from rural areas. CONCLUSIONS: Health providers and social workers in both rural and urban areas should advise patients about the value of advance directives.     

Advance directives in nursing home residents aged > or =65 years: United States 2004

In 1996, 53% of US nursing home residents had advance directives. This report defines documentation of advance directives in a nationally representative survey of US nursing home residents aged !65 years in 2004, as well as advance directive use in relation to demographic factors and receipt of specialty services including hospice/palliative care. In 2004, advance directives were documented in 69.9% of US nursing home residents aged !65 years and in 93.6% of residents receiving hospice/palliative care. Documentation of advance directives increased substantially between 1996 and 2004 and is nearly universal among residents receiving hospice/palliative care services. However in 2004, 3 of every 10 US nursing home residents did not have documentation of advance care plans. Continued efforts are needed to promote the importance of advance care planning among US nursing home residents.     

Residency training in advance care planning: can it be done in the outpatient clinic?

Resident physicians are expected to assist their outpatients to understand and complete advance directives, but their efficacy in doing so remains uncertain. After receiving educational training, internal medicine residents identified at-risk patients and solicited them about advance directives. Residents completed pretest and posttest questionnaires that assessed their knowledge, skills, attitude, and comfort with advance directives. Patients were also surveyed about their attitudes regarding advance directives. Ten internal medicine residents and 88 patients participated. Residents' self-assessed knowledge rose from 6.0 to 9.2 on a 10-point Likert scale. Skills using advance directives increased from 4.0 to 7.9, attitudes improved from 6.0 to 8.4, and comfort rose from 5.4 to 8.9. Eighty-four percent of patients expressed interest in completing advance directives, and 16% actually completed documents. An educational intervention improved knowledge, skills, attitudes, and comfort with advance directives among internal medicine residents practicing in the outpatient setting. Meanwhile, patients demonstrated a strong interest in completing advance directives.     

Advance directives: from the perspective of the patient and the physician.

American physicians and patients share some common ground in their perspectives on advance directives. The majority in both groups strongly endorse the use of these documents. Both groups believe it is the physician's responsibility to initiate the discussion about advance directives. However, a gap between the two perspectives can be defined. In end-of-life decision making, physicians balance the ethical principle of patient autonomy with other principles such as appropriate withholding of care in the setting of futility. Patients' preferences for end-of-life care are most influenced by expected outcomes. Physicians tend to be selective in their indications for initiating a discussion about advance directives, according to clinical factors. In contrast, most patients want to discuss advance directives with their physician under all circumstances.     

Hospitals work to provide advance directives information

With a deadline of Dec. 1 looming ahead of them, hospitals are beginning to prepare for compliance with a new federal law on advance directives. The Patient Self-Determination Act, passed as part of the federal budget last year, requires those institutions participating in Medicare and Medicaid to give information on advance directives for care. Beginning on that date, hospitals will have to ask whether every patient they admit has an advance directive--a living will or a durable power of attorney for health care.     

Development of an interactive computer program for advance care planning

Objective  To describe the development of an innovative, multi-media decision aid for advance care planning.
Background  Advance care planning is an important way for people to articulate their wishes for medical care when they are not able to speak for themselves. Living wills and other types of advance directives are the most commonly used tools for advance care planning, but have been criticized for being vague, difficult to interpret, and inconsistent with individuals' core beliefs and values.
Results  We developed a multimedia, computer-based decision aid for advance care planning ( 'Making Your Wishes Known: Planning Your Medical Future' ) to overcome many of the limitations of standard advance directive forms. This computer program guides individuals through the process of advance care planning, and unlike standard advance directives, provides tailored education, values clarification exercises, and a decision-making tool that translates an individual's values and preferences into a specific medical plan that can be implemented by a health-care team. Pilot testing with 50 adult volunteers recruited from an outpatient primary care clinic showed high levels of satisfaction with the program. Further pilot testing with 34 cancer patients indicated that the program was perceived to be highly accurate at representing patients' wishes.
Conclusions  This paper describes the development of an innovative decision aid for advance care planning that was designed to overcome common problems with standard advance directives. Preliminary testing suggests that it is acceptable to users and is accurate.