LGBT people's knowledge of and preparedness to discuss end‐of‐life care planning options

Despite the devastating impact of HIV/AIDS, end‐of‐life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under‐researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end‐of‐life care. The focus of this paper is their preparedness to discuss with healthcare providers any end‐of‐life care plans. The results highlight that while the majority of respondents were aware of three of the four key end‐of‐life care planning options available in New South Wales – enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives) – a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end‐of‐life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end‐of‐life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.     

Stages of change for the component behaviors of advance care planning

OBJECTIVES: To develop stages‐of‐change measures for advance care planning (ACP), conceptualized as a group of interrelated but separate behaviors, and to use these measures to characterize older persons' engagement in and factors associated with readiness to participate in ACP. DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Persons aged 65 and older recruited from physician offices and a senior center. MEASUREMENTS: Stages of change for six ACP behaviors: completion of a living will and healthcare proxy, communication with loved ones regarding use of life‐sustaining treatments and quantity versus quality of life, and communication with physicians about these same issues. RESULTS: Readiness to participate in ACP varied widely across behaviors. Whereas between approximately 50% and 60% of participants were in the action or maintenance stage for communicating with loved ones about life‐sustaining treatment and completing a living will, 40% were in the precontemplation stage for communicating with loved ones about quantity versus quality of life, and 70% and 75% were in the precontemplation stage for communicating with physicians. Participants were frequently in different stages for different behaviors. Few sociodemographic, health, or psychosocial factors were associated with stages of change for completing a living will, but a broader range of factors was associated with stages of change for communication with loved ones about quantity versus quality of life. CONCLUSION: Older persons show a range of readiness to engage in different aspects of ACP. Individualized assessment and interventions targeted to stage of behavior change for each component of ACP may be an effective strategy to increase participation in ACP.     

Advance end-of-life healthcare planning in an acute NHS hospital setting; development and evaluation of the Expression of Healthcare Preferences (EHP) document

Objective: design and evaluate a document to enable older inpatientsin an NHS hospital to discuss and record end-of-life healthcarepreferences. Design: user and professional collaboration to design the Expressionof Healthcare Preferences (EHP). Prospective questionnaire surveyand outcome evaluation. Setting and Participants: inpatients on wards for older adultsin a London NHS Hospital Trust. Results: the EHP consists of a form and explanatory booklet.95 patients (mean age 81, median MMSE 28) received the EHP.61 (64% (54–74%)) read the EHP and 29 (48% (35–61%))of these recorded their healthcare preferences in the EHP form.The form prompted end-of-life care discussions between 43% (30–57%)of these patients and medical staff and between 52 (38–65)of these patients and "those close to them". The EHP was highlyrated: on a score of 1 to 10 it was thought to be helpful (medianscore 8), interesting (8), informative (8) and reassuring (7)but not upsetting (1). Conclusion: the EHP is an end-of-life advance healthcare planningtool that we have shown can be used to prompt older inpatientsto discuss and record their end-of-life healthcare preferences.     

Use of the Physician Orders for Life‐Sustaining Treatment Program in the Clinical Setting: A Systematic Review of the Literature

The Physician Orders for Life‐Sustaining Treatment (POLST) form is a palliative care tool that contains standardized, actionable medical orders. It is designed to ensure that patient treatment preferences are elicited, communicated, and honored throughout the healthcare system. A systematic review of the literature was conducted to evaluate what is currently known about the POLST program and identify directions for future research. Twenty‐three research studies focused on POLST use in the clinical setting were identified. A majority of studies have been conducted all or in part in Oregon, with chart review the most frequently used methodology. Research suggests that POLST is most commonly used in older, white patients who are near the end of life. A nonphysician facilitator usually prepares the POLST form for the physician to review and sign. The orders documented on POLST reflect a wide degree of individualization, with only approximately one‐third of patients having orders reflecting the lowest level of treatment in all POLST form sections. Clinicians have generally positive attitudes regarding use of POLST yet report a wide range of challenges. POLST alters treatment in a way that is consistent with orders. However, evidence that POLST reflects patient or surrogate treatment preferences is lacking. Research is needed to evaluate the quality of POLST decisions, explore the experiences of patients and their surrogates, develop decision‐support tools, improve clinician education, and assess the effect of POLST on care outcomes through intervention and population‐based studies.     

Decisions to hospitalize nursing home residents dying with advanced dementia

OBJECTIVES: To describe the prevalence of, timing of, and factors associated with decisions not to hospitalize nursing home residents with advanced dementia who were dying. DESIGN: Retrospective cohort study. SETTING: Six hundred seventy five-bed nursing facility in Boston. PARTICIPANTS: Two hundred forty residents in a teaching nursing home who died between January 2001 and December 2003 with advanced dementia. MEASUREMENTS: The prevalence and timing of do-not-hospitalize (DNH) orders were determined from the medical record. Data describing demographic characteristics, health conditions, advance care planning, sentinel events, and health services usage during the last 6 months of life were examined. Factors associated with having a DNH order were identified. RESULTS: At the time of death, 83.8% of subjects had a DNH order. The prevalence of DNH orders was 50.0% and 34.4%, 30 and 180 days before death, respectively. Hospital transfers were common during the last 6 months of life (24.6%). Factors independently associated with having a DNH order before death included surrogate decision-maker was not the subject's child (adjusted odds ratio (AOR)=4.39, 95% confidence interval (CI)=1.52-12.66), eating problems (AOR=4.17, 95% CI=1.52-11.47), aged 92 and older (AOR=2.78, 95% CI=1.29-5.96), and length of stay 2 years or longer (AOR=2.34, 95% CI=1.11-4.93). CONCLUSION: For most institutionalized persons with advanced dementia, a decision to forgo hospitalization is not made until death is imminent. Thus, hospital transfers are common near the end of life. The finding that DNH orders are associated with patient and surrogate factors can help clinicians identify cases in which decisions to forgo hospitalizations may be facilitated.     

Prior capacity of patients lacking decision making ability early in hospitalization

Objective: To investigate the appropriateness of hospitalization as the time to elicit patients’ medical care preferences, the authors evaluated the capability of seriously ill patients to participate in decision making early in hospitalization and their decision making capacity two weeks before hospital entry. Design: Cross-sectional study with retrospective evaluation of preadmission decision making capacity. Setting: Five acute care teaching hospitals. Patients: Four thousand three hundred one acutely ill hospitalized adults meeting predetermined severity of illness criteria in nine specific disease categories. Measurements: Surrogate decision makers’ estimates of the prior mental capacities of patients unable to be interviewed early in hospitalization about care preferences due to intubation, coma, or cognitive impairment. Comparison of the demographics, degrees of sickness at admission, and outcomes of interviewable vs noninterviewable patients. Main results: Forty percent of the patients were not interviewable concerning preferences. Of these, 83% could have participated in treatment decisions two weeks prior to hospitalization. The patients who were not interviewable were more acutely ill, had less chronic disease, and were more likely to die during hospitalization than the interviewable patients. Conclusions: Many acutely ill patients likely to die in the hospital lost their ability to make medical care decisions around the time of hospital admission. Preferences for care and advance directives should be discussed in the outpatient setting or very early in hospital admission. Presented at the annual meeting of the Society of General Internal Medicine, April 29–May 1, 1992, Washington, DC. Funding for SUPPORT is provided by the Robert Wood Johnson Foundation.