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.

Effect of the Contents in Advance Directives on Individuals' Decision-Making.

Completing an advance directive offers individuals the opportunity to make informed choices about end-of-life care. However, these decisions could be influenced in different ways depending on how the information is presented. We randomly presented 185 participants with four distinct types of advance directive: neutrally framed (as reference), negatively framed, religiously framed, and a combination. Participants were asked which interventions they would like to receive at the end of life. Between 60% and 70% of participants responded "accept the special interventions" on the reference form. However, the majority (70%-90%) chose "refuse the interventions" on the negative form. With respect to the religious form, 70% to 80% chose "not decided yet." Participants who refused special life-sustaining treatments were older, female, and with better prior knowledge about advance directives. Our findings imply that the specific content of advance directives could affect decision-making with regard to various interventions for end-of-life care.

From Family Involvement to Family Inclusion in Nursing Home Settings: A Critical Interpretive Synthesis.

The provision of care work by families plays an integral role in the quality of life of older adults living in a nursing home setting. This critical interpretive synthesis examines family members' perceptions of their roles and responsibilities in nursing home settings and interrogates the structural and relational barriers and enablers to family involvement as they relate to fostering an inclusive environment. Electronic databases and published literature were searched for empirical studies that were conducted in a nursing home setting and described involvement from the perspective of family members. Thirty-two articles published between 2006 and 2016 were included in the review. Although involvement comprised a variety of roles and responsibilities, it was grounded in family-resident relationships, influenced by family-staff relationships, and deeply affected by broader sociopolitical factors. We conclude that involvement should be understood as a democratic process with supporting policies and programs to encourage family inclusion in facility life.

Family members' experiences and management of resident-to-resident abuse in long-term residential care.

OBJECTIVES: Resident-to-resident (RRA) abuse is increasingly recognized as a significant problem in long-term residential care.Families have a constant presence in this setting, yet their inclusion in research about RRA is minimal. The purpose of this study was to examine family members' experiences and management of RRA. METHODS: The methodology was critical ethnography.Twelve family members participated in in-depth interviews and 56 hours of participant observation were conducted. Data were analyzed thematically. RESULTS: The main themes illuminate families' experiences of RRA in a context that largely normalizes it.In the absence of formal supports, families developed a range of management strategies, ranging from passive to active intervention.Organizational factors, such as staffing levels and mix, and the physical environment also contributed to RRA. DISCUSSION: Families are actively managing RRA in long-term residential care. Policies and programs, including educational supports, should be developed to validate and support families.

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.

Supporting nursing roles in medical assistance in dying: Development and evaluation of an evidence-based reflective guide.

Objective: To develop and evaluate an evidence-based online Reflective Guide to prepare Registered Nurses and Nurse Practitioners for important professional, personal, and relational roles in MAID in Canada. Methods: The Reflective Guide was developed inductively from qualitative interviews with 120 Canadian nurses. The online Guide contains a 15 min documentary video and five areas of content: nurses' experiences, making moral sense of MAID, best practices, common dilemmas, and self-care strategies. Online visitors to the Guide were asked to participate in a mixed-method evaluation of the Guide. Results: Participants rated their experiences with the Guide highly, indicating that it helped them develop further insights about MAID and strengthened their practice. Qualitative responses revealed an array of emotions that resulted from the philosophic, moral, and professional wrestling that is characteristic of this new practice. Conclusion: The positive responses to the Guide, and the complexity of the responses submitted by respondents, attest to the effectiveness of the Guide and the importance of preparing nurses for the personal and professional aspects of MAID-related practice. Innovation: The MAID Reflective Guide is an effective innovation for nurses as evidenced by its uptake. In the first year the Guide received 2300 unique learners from 30 countries.

Dementia Without Borders: Building community connections to reduce stigma and foster inclusion.

Around the world people with dementia face stigma and social exclusion. An interdisciplinary team from Seattle, Washington, and Vancouver, British Columbia led a collaborative project developing cross-border community partnerships to increase awareness and reduce stigma, promote social participation of people with dementia, and enhance their well-being. The work was organized around three themes - citizen engagement, social entrepreneurship, and creative expression - and involved regular meetings so researchers, community providers, and people with dementia and care partners could know each other better. Dementia Without Borders was organized as an end-of-project celebration, a public festival bringing together community members from both countries to share what the team had learned from each together. The event took place at the Peace Arch, an international park straddling the border between Washington and British Columbia. Over 140 people arrived on their respective sides, created banners, and walked together to the Peace Arch to meet and exchange gifts with those coming from the other country. A picnic shelter was used to display art created by people with dementia and outdoor tables allowed everyone to eat together and listen to poetry readings and musical performances. Feedback was overwhelmingly positive with many expressing a sense of hope and belonging. This project has leveraged the symbolic power of an international border to generate new ideas about fostering social inclusion and reducing stigma for people with dementia. It shows the importance of place and history, building relationships on trust and participation, and being flexible and responsive to opportunities for social innovation.

Medical Assistance in Dying: A Review of Canadian Health Authority Policy Documents.

The purpose of this study was to describe policies developed by English-speaking Canadian health authorities to guide multi-disciplinary healthcare practice in the context of MAID. Seventeen policies from 9 provinces and 3 territories were identified and analyzed thematically. Themes developed from these documents related to ensuring a team approach to care, supporting informed patient choice, creating region-specific guidance on eligibility criteria and safeguards, accommodating conscientious objection, and making explicit organizational responsibilities. Ethical language concerned vulnerability, non-judgmental care, dignity, non-abandonment, confidentiality, moral conscience, and diverse cultural values. Overall, these policies addressed important risk mitigation strategies, acknowledged important social contracts, and supported ethical practice. Collectively, these policies outline important considerations in the evolving Canadian context for other jurisdictions seeking to create policy around assisted death.

Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.

Background: Providing specially trained volunteer navigators is one promising strategy for supporting the increasing number of family caregivers who are caring for children living with medical complexity. Objective: The objective of this study was to develop consensus on the role and competencies required for volunteer navigators who support caregivers of children living with medical complexity. Design: This was a mixed-method study using modified e-Delphi and focus group methods. In phase 1, a modified e-Delphi survey with 20 family caregivers and a focus group with 4 family caregivers were conducted to develop consensus on their unmet needs and the potential roles of a volunteer to meet those needs. In phase 2, a modified e-Delphi survey was conducted with experts to develop consensus on the volunteer competencies required to meet the roles identified by family caregivers in phase 1. Results: Findings from phase 1 resulted in 36 need-related items over 8 domains: communication, daily life and chores, emotional support, information and knowledge, respite, support with decision-making, and sharing the caregiving experience. Concerns about the volunteer role included the potential lack of commitment in the absence of remuneration, the complexity of the child's condition that was beyond the role of a volunteer, and a preference for support from individuals they knew. Findings from the phase 2 Delphi survey with professionals resulted in 22 competencies, derived from the roles identified in phase 1, that would be required of volunteers who wished to support these family caregivers. Conclusion: This study provides insight into a role for volunteers in meeting the needs of family caregivers of children living with medical complexity. A volunteer with lived experience and adequate preparation can assist with meeting some of these important needs. Further research is required to better understand the feasibility and acceptability of such a role.

Scaling out a palliative compassionate community innovation: Nav-CARE.

Background: There is an urgent need for community-based interventions that can be scaled up to meet the growing demand for palliative care. The purpose of this study was to scale out a volunteer navigation intervention called Nav-CARE by replicating the program in multiple contexts and evaluating feasibility, acceptability, sustainability, and impact. Methods: This was a scale-out implementation and mixed-method evaluation study. Nav-CARE was implemented in 12 hospice and 3 nonhospice community-based organizations spanning five provinces in Canada. Volunteers visited clients in the home approximately every 2 weeks for 1 year with some modifications required by the COVID-19 public health restrictions. Qualitative evaluation data were collected from key informants (n = 26), clients/family caregivers (n = 57), and volunteers (n = 86) using semistructured interviews. Quantitative evaluation data included volunteer self-efficacy, satisfaction, and quality of life, and client engagement and quality of life. Findings: Successful implementation was influenced by organizational capacity, stable and engaged leadership, a targeted client population, and skillful messaging. Recruitment of clients was the most significant barrier to implementation. Clients reported statistically significant improvements in feeling they had someone to turn to, knowing the services available to help them in their community, being involved in things that were important to them, and having confidence in taking care of their illness. Improvements in clients' quality of life were reported in the qualitative data, although no statistically significant gains were reported on the quality of life measure. Volunteers reported good self-efficacy and satisfaction in their role. Conclusion: The feasibility, acceptability, and sustainability of the program were largely dependent on strong intraorganizational leadership. Volunteers reported that their involvement in Nav-CARE enabled them to engage in ongoing learning and have a meaningful and relational role with clients. Clients and families described the positive impact of a volunteer on their engagement and quality of life.

Co-creating an Art Exhibition on Living Well With Dementia.

This article considers ethical questions raised during development of an online art exhibit for and with people with dementia and their care partners. This article also describes a participant engagement process emphasizing patient autonomy as a means of dismantling stigma, promoting personhood, and stimulating community engagement. This co-creative project suggests the potential for patients' art to spark attitude change and promote reciprocal, regenerative care practices.

(Dis)Connecting Through COVID-19: Experiences of Older Persons in the Context of a Volunteer-Client Relationship.

The coronavirus (COVID-19) pandemic and mandated physical distancing requirements significantly impacted volunteer programs for older persons with many long-standing programs either ceasing altogether or pivoting to connecting through virtual technologies. In this study, we collected qualitative interview data from 23 clients and 33 volunteers to investigate their experiences during the COVID-19 pandemic and the effects on the volunteer-client relationship. Three themes were identified: pandemic emotions, negotiating social interactions, and growing through the COVID-19 pandemic. These findings provide important insights into the experiences of hospice organizations and their volunteers and clients during the COVID 19 pandemic, further highlighting the importance of acknowledging both older persons' vulnerability and their resilience, of building in compassionate community approaches to care, and of finding innovative ways to foster volunteer-client relationships during times when physical visiting is not possible.

A Seat at the Table: The Positioning of Families During Care Conferences in Nursing Homes.

BACKGROUND AND OBJECTIVES: Current nursing home policy emphasizes the need for collaborative, team-based care planning in which families and/or residents are actively involved. Resident care conferences are common where care providers, families, and/or residents discuss and coordinate resident care needs and evaluate care goals. This study critically examines the process, structure, and content of care conferences to expand our understanding of how resident care is negotiated among care providers and families in this context. RESEARCH DESIGN AND METHODS: This study was part of a larger critical ethnography examining the negotiation of care work among care providers, families, and residents in three purposively selected nursing homes in British Columbia, Canada. Thirty-seven care conferences were observed. Field notes and interview data were thematically analyzed with a focus on what was said, who said what and to whom, whose voice was privileged, and how power manifested between care providers, families, and/or residents. RESULTS: As illustrated by three key themes, Exclusion by Process-Following Script, Exclusion by Content-Scripted Reports, and Exclusion through Devalued Knowledge, families were overtly and covertly excluded from contributing to the care conferences. As such, families' presence did not guarantee open communication or active solicitation of their perspectives. DISCUSSION AND IMPLICATIONS: The use of predetermined agendas and processes, clinically generic reporting, and technical jargon reproduced the structural inequality between care providers and families making collaboration difficult to effectively negotiate. For care conferences to meaningfully contribute to person-centered care, it is imperative that mutual exchange be promoted and families empowered to participate as equals.

The Effect of Adult Day Services on Delay to Institutional Placement.

Delays to institutionalization were compared between elderly individuals who differed in the amounts ("dosages") of adult day services (ADS) they attended. A Kaplan-Meier survival analysis revealed higher dosages of ADS to be associated with greater delays to institutionalization. Retrospective data from financial and service utilization systems and from the Resident Assessment Instrument for Home Care (RAI-HC) were then used to fit a Cox regression model that was adjusted for potential selection biases. This model also found systematically lower hazards for institutionalization at higher ADS dosages. The ADS effect did not appear to be an artifact of increased utilization of additional home health services. Results suggest a beneficial effect of ADS on delay to institutionalization that cannot be attributed to home support, respite, or case management services.

Developing CIRCA-BC and exploring the role of the computer as a third participant in conversation.

The Computer Interactive Reminiscence Conversation Aid (CIRCA) is a software program using touch screen technology and digital materials from public archives to support conversation between people with dementia and their carers. In this 2-phase study, we first worked with seniors' focus groups to identify and select relevant content for a regional adaptation of CIRCA (British Columbia version of CIRCA [CIRCA-BC]). We then pilot tested CIRCA-BC with 3 participants having dementia and a conversation partner, analyzing their interactions to explore how they drew on program content and format to shape their conversations together. Findings provide insight into, first, how participants' shared and distinct social histories influence reminiscence-based conversations and, second, how the computer can be viewed as a third "participant" in the interaction. These findings offer guidelines for ongoing adaptation and application of the CIRCA program in addition to contributing further evidence regarding the role of technology in facilitating meaningful interaction between people with dementia and their carers.