"Respecting our patients' choices": making the organizational decision to participate in voluntary assisted dying provision: findings from semi-structured interviews with a rural community hospice board of management.

BACKGROUND: There is limited literature around how palliative care organizations determine the degree to which they will interface with voluntary assisted dying in jurisdictions where it is legal. The aim of this research was to describe the experience of the board of management of an Australian community-based hospice during their decision-making process around whether to support voluntary assisted dying in the facility, prior to the legislation coming into operation. METHODS: The Board considered this decision over ten meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from workshops which included the community, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. Interviews were audio-recorded and transcribed verbatim and analysed using conventional qualitative content analysis method. RESULTS: The board members experienced a sense of journey in reaching an overall decision, which was to allow full participation in voluntary assisted dying provision for inpatients. Themes based on the journey motif included: starting from a personal view; moving to a hospice perspective; exploring if voluntary assisted dying can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. CONCLUSIONS: The group highlighted several facilitators of a successful outcome including having adequate time, the availability of useful resources, sound board processes and a trusting culture. The study may provide support to other healthcare organisations as they face similar decisions triggered by legislative change.

Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation.

BACKGROUND: There is a lack of research to guide the implementation of voluntary assisted dying legislation within a hospice setting. Furthermore, there is limited published information related to the expectations of the community and staff to assist decision making regarding voluntary assisted dying in a community hospice. The aim of this study was to explore the expectations of staff, volunteers and members of the community as how a rural Australian community hospice could respond in relation to imminent enactment of Voluntary Assisted Dying legislation. METHODS: A total of 63 Hospice staff and volunteers and community members participated in 11 workshops. This qualitative study used the interpretive description method to analyse the workshop transcripts. RESULTS: While there was not a consensus view on community expectation, there was agreement among the participants for respect for a patient's individuality and choices. Furthermore, care offered in hospice needs to remain non-judgemental and patient focused regardless of whether voluntary assisted dying policy was implemented or not. Both opportunities and risks associated with implementation were identified by the participants. CONCLUSION: There was common ground around the respect for the dying person and the ideal of a "safe place" despite opposing views on what this may mean in practice. There is a need for clarity in organisational responses around policy, risk management, education, and staff support.

"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making.

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

How couples with dementia experience healthcare, lifestyle, and everyday decision-making.

ABSTRACTObjectives:Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and "everyday" decision-making. DESIGN: Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. SETTING: Community and residential care settings in Australia. PARTICIPANTS: Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. RESULTS: Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples' approaches to decision-making were influenced by "decisional," "individual," "relational," and "external" factors. The overarching themes of "knowing and being known," "maintaining and re-defining couplehood" and "relational decision-making," are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. CONCLUSIONS: This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.