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.

Navigating medical assistance in dying from Bill C-14 to Bill C-7: a qualitative study.

BACKGROUND: Even as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition. METHODS: This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent. FINDINGS: Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons' eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system. CONCLUSIONS: Significant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.

What's suffering got to do with it? A qualitative study of suffering in the context of Medical Assistance in Dying (MAID).

BACKGROUND: Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses' perspectives. METHODS: A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. RESULTS: Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. CONCLUSIONS: Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices.

Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method.

Caregivers of people living with dementia are pillars of the care community. Providing them with adequate support throughout their caregiving journey is essential to their quality of life and may also contribute to improving the care of people living with dementia. Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is a volunteer-led navigation program that provides support to older adults with life-limiting illnesses who are living in the community. However, Nav-CARE does not provide support directly to caregivers of people living with dementia. To adapt Nav-CARE to support caregivers, we needed to establish caregivers' needs and the competencies volunteer navigators should be trained in to support caregivers to meet these needs. To do so, a modified e-Delphi method was utilized, which consisted of administering three sequential questionnaires to a panel of 35 individuals with expertise in a variety of dementia related domains. Through this, two final lists of 46 caregivers' needs and 41 volunteer competencies were established to inform the development of volunteer navigator training curriculum. Findings suggest that trained volunteer navigators may be able to support caregivers of people living with dementia throughout the disease trajectory and can be used to inform the development of future dementia navigation programs.

Interventions for Caregivers of Older Adults with Dementia Living in the Community: A Rapid Review of Reviews.

This rapid review of systematic reviews examines non-professional interventions that have been implemented to support family caregivers of older adults with dementia who are living in the community. There is a robust body of empirical literature examining such interventions for family caregivers; therefore, this rapid review includes only systematic reviews. MEDLINE, CINAHL, and EMBASE databases were searched from September 2020 to December 2020, and 19 systematic reviews were selected for a full review. Psychosocial, psychoeducational, social support, and multicomponent interventions consistently show positive impacts on a variety of outcomes. The evidence suggests that multicomponent interventions that are tailored to the needs of individual caregivers are the most impactful interventions and should be utilized in future program development. The most effective combination of interventions is unknown and warrants further investigation. However, the repeated success of psychoeducational, psychosocial, and social support interventions suggests that when used together, they may be a successful combination that contributes to positive impacts on caregivers. This multicomponent intervention should be flexible, as interventions are most effective when they are tailored to the individual needs of caregivers and adapted over time as the needs of the caregiver and person living with dementia change with disease progression.

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

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, 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. METHODS: This 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. RESULTS: In 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four per cent 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. CONCLUSIONS: Clinician 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.