Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
Palliative care (PC) is an approach to the care of persons affected by serious illness that focuses on reducing suffering by addressing medical, psychosocial, and spiritual needs. Persons living with Parkinson disease have PC needs that begin at the time of diagnosis and continue throughout the course of the illness including nonmotor symptom burden, caregiver distress, grief, and increased mortality. Primary PC refers to essential PC skills that may be practiced by nonpalliative medicine specialists to improve outcomes for their patients.
Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas.
Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas.
Design: Cross-sectional observational study.
Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center.
Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives).
Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%).
Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
BACKGROUND: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.
OBJECTIVES: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.
DESIGN: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling.
SETTING AND PARTICIPANTS: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer.
METHODS: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis.
RESULTS: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning.
CONCLUSIONS: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions.
METHODS: Paediatricians from six Dutch university hospitals completed a survey during May to September 2017 which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general.
RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n=39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears, and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60% it was stated that ACP has to result in a documented code status.
CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner.
Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients.
Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed.
Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD.
Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
Background: In-Home Supportive Services (IHSS) cares for millions of Medicaid-eligible older adults who are often homebound and socially isolated. Advance care planning (ACP) can be challenging for this population, and IHSS programs may play an important role.
Objective: To explore the feasibility of an IHSS ACP program for frail older adults.
Design: Semistructured focus groups.
Setting/Subjects: ifty IHSS stakeholders (20 administrators, 9 case managers, 13 in-home caregivers, and 8 clients) participated in 10 focus groups in San Francisco.
Measurements: Qualitative thematic content analysis by two independent coders.
Results: Four main themes emerged: (1) Unmet needs: patients' wishes unknown during a medical crisis, lack of education/training for clients and staff; (2) Barriers: conflict of interest and potential medical overreach of IHSS caregivers, lack of billing avenues, time limitations, and cultural, literacy, and language barriers; (3) Facilitators: leveraging established workflows, available technology, and training programs; and (4) Implementation: use a tailored, optional approach based on clients' readiness, focus on case managers not caregivers to prevent conflict of interest; use established intake, follow-up, and training procedures; consider cultural and literacy-appropriate messaging; and standardize easy-to-use procedures, simple scripts, and educational guides, within established workflow to support case managers.
Conclusions: An IHSS ACP program is important and feasible for Medicaid-eligible, frail older adults. Implementation suggestions for success by IHSS stakeholders include focusing on case managers rather than in-home caregivers to prevent conflict of interest; tailoring programs to clients' readiness, literacy, and language; creating educational programs for IHSS staff, clients, and community; and standardizing easy-to-use guides and procedures into IHSS workflows.
Background: Although community-based serious-illness care (CBSC) is an innovative care model, it is unclear to what extent CBSC addresses palliative care needs, particularly for those patients near death.
Objectives: To evaluate palliative care services of a CBSC program.
Design: Retrospective chart reviews.
Setting/Subjects: Patients enrolled in a CBSC program in central North Carolina.
Measurement: Descriptive statistics of palliative care needs and services, such as symptom management, psychosocial support, and advance care planning (ACP), for survivors and decedents.
Results: Patients were seen in an 18-month time frame (n = 159). Mean enrollment in the program was 261.1 days (standard deviation 180.6). Patients' average age was 70 years, 56% were female, and 33% were black. Patients' most frequent comorbidities were dementia (32%), heart failure (32%), and diabetes (28%). Fifty patients (31%) died during the study period. Clinicians most frequently screened for pain (70%), constipation (57%), and dyspnea (57%). Of those screened positive, clinicians most frequently treated pain (92%), anxiety (84%), and constipation (83%). Among the 54% who screened positive for psychosocial distress, 82% received support. Clinicians screened 22% for spiritual needs; 4% received spiritual care. Among decedents, 66% were enrolled in hospice; 14% died in in-hospital. Decedents were more likely than survivors to have ACP (34% vs. 18%, p = 0.03) and a primary goal of comfort (40% vs. 12%, p < 0.01).
Conclusions: A CBSC program provided palliative care services comparable with other home-based palliative care programs. Although the CBSC program does not address all domains of palliative care, it provided most with symptom management, psychosocial support, and ACP.
Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.
The objective of this descriptive article is to provide a background of current research and data on advance care planning. Additionally, a proposed and detailed education initiative for increasing completion and understanding of advance care planning documents is presented.
Purpose: To explain and predict racial or ethnic disparities in advance care planning (ACP) behaviors among American adults by using the Integrated Behavioral Model (IBM) and the Precaution Adoption Process Model.
Methods: A randomized, observational, nonexperimental, cross-sectional study design was used to survey American adults between 40 and 80 years of age (n = 386).
Results: The majority of respondents (75%) had not completed ACP. Significant differences were found by race or ethnicity: 33% of Whites had completed ACP versus Hispanics (18%) and Blacks (8%). Whites had statistically significantly higher levels of most IBM constructs compared with Blacks and Hispanics. The IBM predicted 28% of the variance in behavioral intention. After controlling for sociodemographic variables, direct attitudes, indirect attitudes, and indirect perceived norms were significant predictors of behavioral intention.
Conclusion: The IBM and the Precaution Adoption Process Model are useful frameworks for interventions designed to increase ACP among racial or ethnic minorities in the United States.
Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.
While death is a universal human experience, the process of planning for death can be difficult and may be avoided altogether. To understand community perspectives of end-of-life preparedness, we undertook a multimethod study exploring the experiences of 25 community members and 10 stakeholders engaged in end-of-life planning. In addition, card sorting activities and focused discussions with 97 older adults were undertaken to highlight perspectives and needs. Data were analyzed using descriptive statistics and qualitative description. Overall, the participants perceived many benefits to being end-of-life prepared, however, few community members had engaged in formal planning. Key barriers include concerns about the accessibility and accuracy of information, discomfort when engaging in end-of-life conversations, and perceptions about the cost associated with engaging in formal legal or financial preparations. Areas for further research include the need for studies that capture the cultural dimensions of end-of-life planning and explores the implementation and evaluation of community-based interventions to improve preparedness.
OBJECTIVES: Assessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention.
METHODS: We developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial.
RESULTS: Fidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met.
CONCLUSIONS: Fidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier.
OBJECTIVES: How advance care planning (ACP) is conceptualised in Australia including when, where and how ACP is best initiated, is unclear. It has been suggested that healthcare delivered in general practice provides an optimal setting for initiation of ACP discussions but uptake remains low. This systematic review and critical interpretive synthesis sought to answer two questions: (1) What are the barriers and enablers to uptake of ACP in general practice? (2) What initiatives have been used to increase uptake of ACP in general practice?
DESIGN: A systematic review and critical interpretive synthesis of the peer-reviewed literature was undertaken. A socioecological framework was used to interpret and map the literature across four contextual levels of influence including individual, interpersonal, provider and system levels within a general practice setting.
SETTING: Primary care general practice settings DATA SOURCES: Searches were undertaken from inception to July 2019 across Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, Scopus, ProQuest and Cochrane Library of systematic reviews.
RESULTS: The search yielded 4883 non-duplicate studies which were reduced to 54 studies for synthesis. Year of publication ranged from 1991 to 2019 and represented research from nine countries. Review findings identified a diverse and disaggregated body of ACP literature describing barriers and enablers to ACP in general practice, and interventions testing single or multiple mechanisms to improve ACP generally without explicit consideration for level of influence. There was a lack of cohesive guidance in shaping effective ACP interventions and some early indications of structured approaches emerging.
CONCLUSION: Findings from this review present an opportunity to strategically apply the ACP research evidence across targeted levels of influence, and with an understanding of mediators and moderators to inform the design of new and enhanced ACP models of care in general practice.
PROSPERO REGISTRATION NUMBER: CRD42018088838.
OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.
METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.
RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.
CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.
CONTEXT: The validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long.
OBJECTIVES: Determine whether shorter Survey versions (55-, 34-, 15-, 9-, 4-items) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information.
METHODS: We assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE versus an advance directive (AD-only) study arms. The Survey was administered at baseline, 1 week, and 3, 6, 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item Survey with shorter versions, and within- and between-group effect sizes of the mean change scores.
RESULTS: Shorter Survey versions were able to detect within- and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78 to 0.97) and the amount of between-group differences were comparable using all Survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different Survey versions in the PREPARE arm and from 0.44 to 0.64 for the AD-only. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different Survey versions. Results were similar when stratified by English- and Spanish-speakers.
CONCLUSION: Shorter versions of the ACP Engagement Survey were able to detect within- and between-group changes comparable to the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.
OBJECTIVE: The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future.
METHODS AND ANALYSIS: This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported.
ETHICS AND DISSEMINATION: Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to dissesseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms.