Documenting Plans for Care: Advance Care Directives and the 7-Step Pathway in the Acute Care Context

Background Advance care planning (ACP) involves the discussion and documentation of an individual’s values and preferences to guide their future healthcare should they lose capacity to make or communicate treatment decisions. ACP can involve the individual’s completion of an Advance Care Directive (ACD), a legislated and common-law instrument which may include appointment of a substitute decision-maker and binding refusals of treatment. In South Australia, ACDs intersect in the acute-care context with the Resuscitation Plan 7-Step Pathway (7-SP), an integrated care plan written for and by clinicians, designed to organise and improve patients’ end-of-life care through the use of structured documentation. Here, we examine the perspectives of healthcare professionals (HPs) within a hospital setting on the practical integration of ACDs and the 7-SP, exploring the perceived role, function, and value of each as they intersect to guide end-of-life care in an Australian hospital setting. Methods Qualitative data were collected via eight focus groups with a total of 74 HPs (palliative care, acute care, and oncology specialists; medical intern; general and emergency nurses; social workers) across two hospitals. Audio recordings were transcribed and thematically analysed. Results HPs viewed ACDs as a potentially valuable means of promoting patient autonomy, but as rarely completed and poorly integrated into hospital systems. Conversely, the process and documentation of the 7-SP was perceived as providing clarity about clinicians’ responsibilities, and as a well-understood, integrated resource. Participants sometimes exhibited uncertainty around which document takes precedence if both were present. Sometimes, the routinisation of the 7-SP meant it was understood as the ‘only way’ to determine patient wishes and provide optimal end-of-life care. When this occurs, the perceived authority of ACDs, or of patients’ choice not to participate in end-of-life discussions, may be undermined. Conclusions The intersection of ACDs and the 7-SP appears problematic within acute care. Clinicians’ uncertainty as to whether an ACD or 7-SP takes precedence, and when it should do so, suggests a need for further clarity and training on the roles of these documents in guiding clinical practice, the legislative context within which specific documentation is embedded, and the dynamics associated with collaborative decision-making in end-of-life care.

Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey

ObjectiveTo describe the Australian adult public’s knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role.MethodsThis is a national cross-sectional online survey of the Australian adult public. The survey examined participants’ advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM.ResultsOf 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=−3.694, p<0.001) were significantly higher compared with those who had not.ConclusionsThe Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.

Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit

ObjectivesTo describe among individuals with dementia: (1) self-reported awareness of, and engagement in, advance care planning; (2) presence of advance care planning documentation in the health record and (3) concordance between self-reported completion of advance care planning and presence of documentation in the health record.MethodsAn Australian prospective multicentre audit and cross-sectional survey. Individuals diagnosed with dementia who were able to speak English and were judged by a healthcare provider as having decision-making capacity were recruited from self-selected hospitals, residential aged care facilities and general practices across Australia.ResultsFifty-two people with dementia completed surveys and were included. Overall, 59.6% of participants had heard about advance care planning and 55.8% had discussed advance care planning with someone, most often a family member (48.1%). While 38.5% of participants had appointed a medical substitute decision maker, only 26.9% reported that they had written down their values and preferences for future care. Concordance between self-reported completion of advance care planning and presence of documentation in the health record was low (56.8%, κ=0.139; 57.7%, κ=0.053).ConclusionEffective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.

Evaluation of an initiative to improve advance care planning for a home-based primary care service

Background Advance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future. There is evidence that ACP reduces hospital-based interventions, especially at the end of life. ACP for frail older adults is especially important as this population is more likely to use hospital services but less likely to benefit from resource intensive care. Our study goal was to evaluate whether an approach to ACP developed for frail older adults, known as the Palliative and Therapeutic Harmonization or PATH, demonstrated an improvement in ACP. Methods The PATH approach was adapted to a primary care service for homebound older adults in Vancouver, Canada. This retrospective chart review collected surrogate measures related to ACP from 200 randomly selected patients enrolled in the service at baseline (prior to June 22, 2017), and 114 consecutive patients admitted to the program after implementation of the PATH ACP initiative (October 1, 2017 to May 1, 2018). We compared the following surrogate markers of ACP before and after implementation of the PATH model, chart documentation of: frailty stage, substitute decision-maker, resuscitation decision, and hospitalization decision. A composite ACP documentation score that ascribed one point for each of the above four measures (range 0 to 4) was also compared. For those with documented resuscitation and hospitalization decisions, the study examined patient/ substitute decision-maker expressed preferences for do-not-resuscitate and do-not-hospitalize, before and after implementation. Results We found the following changes in ACP-related documentation before and after implementation: frailty stage (27.0% versus 74.6%, p < .0001); substitute decision-maker (63.5% versus 71.9%, p = 0.128); resuscitation decision documented (79.5% versus 67.5%, p = 0.018); and hospitalization decision documented (61.5% versus 100.0%, p < .0001); mean (standard deviation) composite ACP documentation score (2.32 (1.16) versus 3.14 (1.11), p < .0001). The adjusted odds ratios (95% confidence intervals) for an expressed preference of do-not-resuscitate and do-not-hospitalize after implementation were 0.87 (0.35, 2.15) and 3.14 (1.78, 5.55), respectively. Conclusions Results suggest partial success in implementing the PATH approach to ACP in home-based primary care. Key contextual enablers and barriers are important considerations for successful implementation.

End of Life, Food, and Water: Ethical Standards of Care

End-of-life care constitutes an important situation of extreme nutritional vulnerability for older adults. Feeding decisions in late-stage dementia often provoke moral and ethical questions for family members regarding whether or not to continue hand-feeding or opt for tube-feeding placement. Despite the knowledge that starvation and dehydration do not contribute to patient suffering at the end of life and in fact may contribute to a comfortable passage from life, the ethics of not providing artificial nutrition and hydration (ANH) continue to be hotly debated. However, in the past two decades, voluntary stopping of eating and drinking (VSED) has moved from a palliative option of last resort to being increasingly recognized as a valid means to intentionally hasten death for cognitively intact persons dealing with a serious illness. Across many settings globally, when oral intake is deemed unsafe, decisions to withhold oral feeding and to forgo artificial means of providing nutrition are deemed to be ethically and legally sanctioned when the decision is made by a capable patient or their legally recognized substitute decision-maker. Decision-making at the end of life involves knowledge of and consideration of the legal, ethical, cultural, religious, and personal values involved in the issue at hand. This chapter attempted to illustrate the unique complexities when considering nutrition therapy (by oral and artificial means) at the end of life.

Advanced consent for participation in acute care randomised control trials: protocol for a scoping review

IntroductionInformed consent is essential to clinical research, though obtaining informed consent for participation in research for emergency conditions is challenging. Adapted consent methods include consent from a substitute-decision maker, deferral of consent and waiver of consent. A novel approach is to use advanced consent, where a potential participant provides consent in the present in the event that they become eligible for enrolment into a future study. This scoping review will map and synthesise the literature on the use of advanced consent for participation and enrolment in randomised control trials for emergency conditions.Methods and analysisGuided by Arksey and O'Malley’s scoping review methodology framework, we will search electronic databases (Medline, Embase, Web of Science and the Cochrane Register of Clinical Trials), the grey literature sources and reference lists of relevant studies. Eligible studies will include English language articles that discuss, examine or employ the use of advanced consent for enrolment in randomised control trials, specifically related to emergency conditions or emergency treatment. Diverse types of articles will be eligible for inclusion, including peer-reviewed qualitative and quantitative studies such as randomised control trials, observational studies, surveys, systematic reviews, as well as narrative reviews and ethics papers. Studies will be screened by two independent reviewers to determine eligibility for inclusion. Data on bibliographic information, study characteristics and methodology, and reported results, specifically author disposition, will be extracted and described using qualitative analysis.Ethics and disseminationFormal ethics review is not required as primary data will not be collected. The findings of this study will be disseminated through a peer-reviewed publication. The findings of this study will help identify knowledge gaps that may guide areas for future research and may aid in the design of future clinical trials using advanced consent.

Incorporating an advance care planning screening tool into routine health assessments with older people

General practice is arguably the ideal setting to initiate advance care planning (ACP), but there are many barriers. This pilot study was designed to assess the feasibility, acceptability and perceived utility of a nurse-facilitated screening interview to initiate ACP with older patients in general practice. Patients were recruited from four general practices in Sydney, Australia. General practice nurses administered the ACP screening interview during routine health assessments. Patients and nurses completed a follow-up questionnaire consisting of questions with Likert responses, as well as open-ended questions. Descriptive statistics and content analysis were used to analyse the data. Twenty-four patients participated; 17 completed the follow-up questionnaire. All patients found the ACP screening interview useful and most felt it would encourage them to discuss their wishes further with their family and general practitioner. Several patients were prompted to consider legally appointing their preferred substitute decision-maker. All six participating nurses found the screening interview tool useful for initiating discussions about ACP and substitute decision-making. This nurse facilitated screening tool provides a simple, acceptable and feasible approach to introducing ACP to older general practice patients during routine health assessments.

Advance Care Planning and Decision-Making in a Home-Based Primary Care Service in a Canadian Urban Centre

BackgroundAdvance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future, and has been shown to reduce hospital-based interventions at the end of life. Our goal was to describe the current state of ACP in a home-based primary care program for frail homebound older people in Vancouver, Canada. We did this by identifying four key elements that should be essential to ACP in this program: frailty stage, documentation of substitute decision-makers, and decision-making with regard to both resuscitation (i.e., do not resuscitate (DNR)) and hospitalization (i.e., do not hospitalize (DNH)). While these elements are an important part of the ACP process, they are often excluded from common practice. MethodsThis was a cross-sectional, observational study of data abstracted from 200 randomly selected patient electronic medical records between July 1 and September 30, 2017. We describe the association between demographic characteristics, comorbidities, and four key elements of ACP documentation and decision-making as documented in the clinical record using bivariate comparison, a logistic regression model and multiple logistic regression analysis. ResultsIn 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four percent had documentation of a substitute decision-maker. Of those who had their preferences documented, 90.6% (n=144/159) indicated a preference for DNR, and 23.6% (n=29/123) indicated a preference for DNH. In multiple regression modeling, a diagnosis of dementia and older age were associated with documentation of a DNR preference, adjusted odds ratio (AOR) = 4.79 (95% CI 1.37, 16.71) and AOR = 1.14 (95% CI 1.05, 1.24), respectively. Older age, male sex, and English identified as the main language spoken were associated with a DNH preference. AOR = 1.17 (95% CI 1.06, 1.28), AOR = 4.19 (95% CI 1.41, 12.42), and AOR = 3.42 (95% CI 1.14, 10.20), respectively. ConclusionsClinician documentation of some elements of ACP, such as identification of a substitute decision-maker and resuscitation status, have been widely adopted, while other elements that should be considered essential components of ACP, such as frailty staging and preferences around hospitalization, are infrequent and provide an opportunity for practice improvement initiatives. The significant association between language and ACP decisions suggests an important role for supporting cross-cultural fluency in the ACP process.

Factors Associated With Designation of a Substitute Decision-Maker in Older Asian Americans: The Role of Cultural Factors

The present study examined the prevalence of and factors associated with the designation of a substitute decision-maker (SDM) in a sample of older Asian Americans. Particular emphasis was placed on cultural factors (ethnicity, time in the United States, English proficiency, acculturation, and cultural belief) that might influence on one’s attitudes toward death and dying or end-of-life decision-making. Data were drawn from the 499 participants aged 60 years and older using the 2015 Asian American Quality of Life survey. Twenty-two percent of the sample had completed a legal document identifying a SDM. Results of a hierarchical logistic regression indicated that ethnicity, time in the United States, English proficiency, and acculturation were significant predictors. By examining the role of cultural factors in predicting SDM designation, the present study provided implications for culturally tailored strategies to help older Asian Americans plan their end-of-life care.