Aspects Of Advance Care Planning Research Articles

Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians

ObjectivesThis study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). MethodsSemi-structured qualitative interviews based on end-of-life communication models with a convenience sample of 17 clinicians, and 15 surrogates of PWAD. We used a hybrid approach of deductive and inductive thematic analysis. ResultsTwo main themes emerged. 1)Deficits in communication: Often surrogates did not fully comprehend the disease trajectory or medical treatments, like the likelihood of pneumonia and use of mechanical ventilation, nor concepts related to ACP, particularly legal documents and orders such as Do Not Hospitalize, which made decision-making challenging as perceived by clinicians. 2)Decision-making conflicts: Clinicians perceived a disconnect between surrogates' understanding of their loved one's preferences and knowing how or when to operationalize them. ConclusionsSignificant gaps in knowledge surrounding disease trajectory and complications, such as pneumonia, and aspects of ACP, exist. These gaps create decision-making challenges for surrogates and clinicians alike. InnovationThis study assessed both clinicians and surrogate decision-makers' perspectives on communication and decision-making concerning care preferences, goals, and ACP. The study findings from a national cohort can inform decision-support interventions for clinicians and surrogate decision-makers of PWAD.

Exposure to a Loved One's Death and Advance Care Planning: Moderating Effects of Age.

Background: Despite documented benefits of Advance Care Planning (ACP), it is still under-utilized in the U.S. Our study aimed to examine whether experiencing a loved one's death is associated with one's own ACP behavior among adults in the U.S. and the potential moderating effect of age. Method: Using a nationwide cross-sectional survey design with probability sampling weights, our study included 1006 adults in the U.S. who participated in and completed the Survey on Aging and End-of-Life Medical Care. Three binary logistic regression models were established to investigate the relationship between death exposure and different aspects of ACP (i.e., informal conversations with family members and doctors and formal advance directives completion). The moderation analysis was subsequently conducted to examine moderating effects of age. Results: The exposure to a loved one's death was significantly associated with higher odds of having conversations with family about end-of-life medical care preferences among the 3 indicators of ACP (OR = 2.03, P < .001). Age significantly moderated the association between death exposure and ACP conversations with doctors (OR = .98, P = .017). The facilitation effect of death exposure on informal ACP engagement in discussing end-of-life medical wishes with doctors is stronger among younger adults than older adults. Conclusions: Exploring an individual's previous experience with a loved one's death might be an effective way to broach the concept of ACP among adults of all ages. This strategy may be particularly useful in facilitating discussions of end-of-life medical wishes with doctors among younger adults than older adults.

Trends in advance care planning and end-of-life care among persons living with dementia requiring surrogate decision-making.

Previous studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life. We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS. Among 870 adults (weighted N= 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2pp; P-for-trend=0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change. Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

The Role Complexities in Advance Care Planning for End-of-Life Care-Nursing Students' Perception of the Nursing Profession.

Nurses’ perceptions of being responsible for advance care planning (ACP) vary greatly across different studies. It could, however, affect their involvement in advance care planning and patients’ quality of death. Recent studies on this topic have mostly focused on advance directives but not ACP and nurses in the ward setting. This study aimed to assess the perception of Hong Kong nursing undergraduates of the nurse’s role in advance care planning and examine its associations with knowledge, attitude, and experience. A cross-sectional 57-item survey was delivered to nursing undergraduates between June and August 2020. The chi-squared test or Fisher’s exact test were used for univariate analysis. The multiple logistic regression model was used for multivariate analysis. A total of 469 participants were assessed for eligibility; 242 of them were included in the data analysis, with a response rate of 97.6%. The majority of respondents—77.3% (95% CI: 72.0–82.6%)—perceived having a role in ACP, but large discrepancies were found between their perception of their role regarding different aspects of ACP. Participants who had a better knowledge status (p = 0.029) or supported the use of ACP (p < 0.001) were more likely to have a positive perception of their role in ACP. A negative correlation was found between the experience of life threat and positive role perception (p < 0.001). Through strengthening training, the role clarity of nursing undergraduates could be achieved, maximizing their cooperation with and implementation of ACP in their future nursing career. The enhancement of end-of-life education could also be undertaken to fill nursing undergraduates’ knowledge gap in this area and change their attitudes.

Racial Differences in the Impact of Subjective Life Expectancy on Advance Care Planning

The need for advance care planning (ACP) is heightened during the COVID-19 pandemic, especially for older Blacks and Latinx persons who are at a disproportionate risk of death from both infectious and chronic disease. A potentially important yet underexplored explanation for well-documented racial disparities in ACP is subjective life expectancy (SLE), which may impel or impede ACP. Using Health and Retirement Study data (n=7484), we examined the extent to which perceived chances of living another 10 years (100, 51-99, 50, 1-49, or 0 percent) predict three aspects of ACP (living will (LW), durable power of attorney for health care designations (DPAHC), and discussions). We use logistic regression models to predict the odds of each ACP behavior, adjusted for sociodemographic, health, and depressive symptoms. We found modest evidence that SLE predicts ACP behaviors. Persons who are 100% certain they will be alive in ten years are less likely (OR = .68 and .71, respectively) whereas those with pessimistic survival prospects are more likely (OR = 1.23 and 1.15, respectively) to have a LW and a DPAHC, relative to those with modest perceived survival. However, upon closer inspection, these patterns hold only for those whose LW specify aggressive measures versus no LW. We found no race differences for formal aspects of planning (LW, DPAHC) although we did detect differences for informal discussions. Blacks with pessimistic survival expectations are more likely to have discussions, whereas Latinos are less likely relative to whites. We discuss implications for policies and practices to increase ACP rates.

Do Perceptions of Own and Spouse Survival Affect Advance Care Planning?

COVID-19 has intensified the need for advance care planning (ACP), or formal preparations for end-of-life care, prior to the time such decisions are required. We propose that older adults’ perceived chances of survival, and one’s perceptions of whether they will outlive their spouse may be powerful motivators of ACP. Using data from the Wisconsin Longitudinal Study (WLS, n=4908, M age = 65), we examine the extent to which: (a) one’s perceived 10- and 20-year survival and (b) projections of dying before, after, or at the same time as one’s spouse affect three aspects of ACP (living will, durable power of attorney for health care designations (DPAHC), and discussions). Multivariate analyses are adjusted for health, demographics, socioeconomic characteristics, and death anxiety. In the full sample, women who perceived a high likelihood of 20-year survival were less likely (OR=.604, p < .05) whereas their male counterparts were more likely (OR = 1.4, p <.01) to name a DPAHC (relative to those who perceived a medium likelihood of survival). Among married persons only (n=3860), people who perceive that they will pre-decease their spouse are 1.5 times as likely to name their spouse as DPAHC (vs. no DPAHC), but are no more likely to name a different person to the role (relative to those who perceive that they and spouse will die at the same time). Practitioner and family conversations about older patients’ projected survival and how it shapes decision making are especially important as COVID-19 may require rapid decisions about end-of-life treatments.

Legal Aspects of Advance Care Planning and Advance Directives

Legal Aspects of Advance Care Planning and Advance Directives

Primary care clinicians’ confidence, willingness participation and perceptions of roles in advance care planning discussions with patients: a multi-site survey

People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care. The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients. We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable. The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4). Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.

O-116 How do general practitioners conceptualise advance care planning in their practice? A qualitative study

Background Although general practitioners (GPs) are well placed to initiate advance care planning (ACP) in a timely manner, many find it difficult. Training programmes can improve their skills in performing this task but need to draw on GPs’ previous knowledge and experience to be effective. Aim To explore how GPs conceptualise ACP, based on their experiences with ACP in their practice. Methods This study, using a qualitative study design, was conducted with GPs in Belgium. Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results With regard to content of discussions, ACP was conceptualised as the organisation of professional care required to meet patients’ needs, bad news conversations, choices of treatment and types of care for the patient, and the completion of documents. With regard to tasks for the GP, ACP was considered in terms of exploring patients’ vague preferences, coordinating care to address patients’ and families’ needs, actively initiating ACP and providing comfort when discussing palliative care with terminal patients. These conceptualisations could occur simultaneously in the narrative of a GP, however some only used one of the conceptualisations to present ACP. Discussion This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. Conclusion Training efforts building further on GPs’ conceptualisation of ACP could improve their skills and knowledge of the ACP process, and lead to a better uptake of all the important elements of ACP discussions.

HEALTH PROFESSIONALS’ PERSPECTIVES ABOUT ADVANCE CARE PLANNING IN PARKINSON'S DISEASE: A QUALITATIVE STUDY

BackgroundPeople with Parkinson's disease face repeated hospital admissions and medical interventions in the last year of life. Advance care planning (ACP) is advocated, aiming to empower patients by engaging them...

Agreement Between Older Persons and Their Surrogate Decision-Makers Regarding Participation in Advance Care Planning

To examine agreement between older persons and their surrogates regarding participation in advance care planning (ACP). Observational cohort study. Community. Persons aged 65 and older and the individual they identified as most likely to make treatment decisions on their behalf. Older persons were asked about participation in four activities: completion of living will, completion of healthcare proxy, communication regarding views about life-sustaining treatment, and communication regarding views about quality versus quantity of life. Surrogates were asked whether they believed the older person had completed these activities. Of 216 pairs, 81% agreed about whether a living will had been completed (κ=0.61, 95% confidence interval (CI) 0.51-0.72). Only 68% of pairs agreed about whether a healthcare proxy had been completed (κ=0.39, 95% CI 0.29-0.50), 64% agreed about whether they had communicated regarding life-sustaining treatment (κ=0.22, 95% CI 0.09-0.35), and 62% agreed about whether they had communicated regarding quality versus quantity of life (κ=0.23, 95% CI 0.11-0.35). Although agreement between older persons and their surrogates regarding living will completion was good, agreement about participation in other aspects of ACP was fair to poor. Additional study is necessary to determine who is providing the most accurate report of objective ACP components and whether agreement regarding participation in ACP is associated with greater shared understanding of patient preferences.

Stages of Change for the Component Behaviors of Advance Care Planning

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. Observational cohort study. Community. Persons aged 65 and older recruited from physician offices and a senior center. 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. 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. 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 care planning among Asian Americans and Native Hawaiians receiving haemodialysis

To explore the attitudes about death and dying, advance care planning (ACP), and completion of ACP among Asian Americans (AAs) and Native Hawaiians (NHs) receiving haemodialysis. This study was a descriptive, cross-sectional survey design. A convenience sample of 50 participants aged 30-82 years was recruited from four outpatient dialysis centers in Honolulu, Hawaii and interviewed face-to-face using a 43-item end-of-life community survey. A majority of participants perceived dying as an important part of life and were comfortable talking about death, but expressed concerns and fears about end-of-life issues. Aspects of ACP, such as planning a funeral service, getting finances in order, and completing the will were important. While most participants' attitudes about ACP were positive, less than half (40%) had completed ACP. Most participants preferred initiating end-of-life conversations with family. The main conclusions drawn from this study are that there is a need for ACP and secondly that AAs and NHs would prefer to discuss ACP with family members rather than health or legal professionals. Findings from this preliminary study build on the need to use a theoretical framework in which to develop sound instruments and effective interventions to promote ACP completion among AAs and NHs receiving haemodialysis.

The Creation of an Advance Care Planning Process for Patients With ESRD

Comprehensive care of patients with end-stage renal disease (ESRD) requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis therapy. ACP currently is under evolution from a document-driven decision-focused event. This article describes a new approach to ACP that emphasizes a relational patient-centered process that focuses on broader goals of care for a particular dialysis patient with known medical problems and is designed to serve as a guide to help nephrologists, social workers, and other health care professionals explore ACP discussions with their patients with ESRD. Specifically, we define ACP, highlight goals and key features of this facilitated ACP process, and provide an interview guide with examples of questions that can be used to explore the various aspects of ACP with patients and their families. Outcomes of such an ACP process will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the entire end-of-life experience and having outcomes match patient preferences. It is expected that such a process will enhance shared decision making among patient, surrogate, and health care provider and help build strong and intimate relationships that can only serve to enhance end-of-life care. Throughout this process, patients are not abandoned as they confront the realities of declining health and functional status, but rather are supported through their illness and life on dialysis treatment.