There were 63 participants (2 – 11 per group) in 11 workshops (identified as W1 – W11 below) between July and September 2020. The mean duration was 1.7 hours (range 1.6 – 2.4 hours). Although grouping with peers was offered, no participant requested this. Ten groups were mixed staff, volunteers and community members, with one group consisting of staff only. No participant withdrew.
Descriptive information is shown in Table 1. The ages of attendees ranged between 23 and 87 years with a median of 61 years. While there was an even spread of years of association among community members, eight of the 11 nurses who participated had five or more years of association with ACH.
Description of Workshop Attendees
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Relationship/role in ACH
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Hospice Committee member
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Length of Association with ACH
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Participants did not have a consensus view on what the community would expect from Hospice in terms of VAD implementation. However, a number of themes emerged that could guide possible Board responses. Of note is that various views were usually framed in an overall context of respect for the patient’s individuality and choices, and that care would always need to remain non-judgemental, and patient focused.
The only thing that’s important really here, their views, their wants, their needs, and what does that say? What is most important to her? So, what is it she is looking for? What support does she need? (W1).
Hospice Must Be A Safe Place
Hospice being a “safe place” was a recurring theme in all workshops as “something the Hospice should protect” (W5). A safe place was seen as one in which everyone could feel confident that they would not be exposed to discrimination, criticism, or any emotional or physical harm. However, there was no unified view as to what that concept of safety would mean for a VAD implementation decision, either for patients, staff, or volunteers.
Safety for patients and families
For some, ACH would remain safe for patients and families if VAD was not practised within the facility. Concerns were raised that patients could become increasingly fearful about admission to Hospice if VAD was adopted as “people are already refusing palliative care because they don't want to admit they are dying” (W8) or hold beliefs that “we’re going to be killing people up at the Hospice” (W4). Concerns about cultural and religious safety were also raised.
Hospice at the moment is seen as a safe place by cultural [groups], by regional community, by our religious communities. We feel that we could lose that very much - that feeling of safe place, and that’s how Aboriginals describe it when they come as well, and they’re happy to come to Hospice. It’s not hospital and it’s not their home. And will we lose that if we provide that space for self-administration. (W1).
For others, policies referring a patient to somewhere outside Hospice for access to VAD was seen as unsafe for that patient through a perceived lack of support for their choice and negative judgements from staff: “I think that a lot of people would question going to the Hospice, given that the choices that they may make wouldn’t be honoured” (W7).
Irrespective of VAD occurring in Hospice or not, it was suggested that safety could be improved for patients and families. Timely, professional and consistent information should be available about “all the options, support networks, and community resources” (W4) and about local VAD policies. Patients and families could be supported by a “dedicated VAD support coordinator” (W2) from within staff whose role is to help people understand what was possible within the Hospice context, provide practical support and be an extra resource for resolving conflict. This conflict was seen as potentially occurring within a family but also between families who interact in shared spaces within the facility. It was felt important that patients were not left on their own to navigate “through all the bureaucracy and telephoning people” (W6) at the end of life. If VAD became part of ACH practice, support services need to be extended (e.g., peer support groups and specific bereavement support) and existing quality and safety processes be widened, with comments noting a complication or error is “bound to happen in the real world” (W6).
Staff and volunteer safety
Participants considered that a safe place for staff and volunteers, independent of specific VAD policy decisions, would require several foundations to be in place. These included everyone feeling secure that their views would be treated with “mutual respect” (W8), and there would be no judgement about individuals’ decisions and “the rights for the staff to say no” (W1). Clarity in policy and procedures was advocated, with “no second guessing” (W8) required, especially around conscientious objection to participation and staff responsibilities. Mechanisms for outside “independent” (W5) and “anonymous” (W8) counselling, such as an external Employee Assistance Programme, were suggested for safety. An ongoing education programme was also emphasized including sessions describing VAD legislation in detail and workshops to develop “toolboxes and scripts” (W5) to assist staff in responding appropriately and resolving issues as they arose. Other suggestions included clear processes for conflict resolution and moderating escalation; building teams that felt safe and could openly communicate; the provision of mentors; training in managing interpersonal distress; new processes in accreditation of doctors around scope of practice; and the creation of a dedicated team to lead change processes.
This was also referenced as a consideration as to whether VAD could be seen as safe practice for a centre that aimed to be a “leader in the provision of expert palliative care” . Some considered it would “go hand in hand with that palliative care” (W7), “be the ultimate palliative care” (W2) and “that the community expectation was that this falls under palliative care” (W2). For others, VAD was felt to be a practice that would expose ACH as “being out of step… standing alone and doing the opposite to what the rest of the palliative care family are doing” (W1) and contradicting “the philosophy that Hospice in no way hastens death” (W8).
While many recollected high public polling for VAD legislation, most reported that they “actually don’t know” (W8) whether the community expected that VAD could occur in ACH “because community is not a homogenous mix” (W10). Participants believed that there is “so much unknown” (W10) around VAD and that this is a highly complex area, with the intersection of a patient’s experience of a terminal diagnosis, palliative care and VAD described as a “minefield” (W4), “messy” (W1) and “often not black and white” (W1).
However, it was felt that expectations would become clearer as practices became more established, and that as a smaller organisation ACH may have fewer constraints when developing policies related to VAD, hence should “reflect better on what this community feels it needs. … And respond more quickly. … And appropriately” (W6) and remain open to changing concerns.
With respect to specific positions, many participants agreed that the provision of basic VAD information only (e.g., navigator service contact number) would not meet community expectations, and would be seen as “pretty much unfeeling, uncaring, minimally supportive of someone who’s in need” (W4) especially if information provision was in a perfunctory manner:
I think it’s a cop out really. The Hospice is there to give help at a time when it’s really needed. A lot of people probably know the members of the Hospice anyway - small country town - and to turn around and say, no, we don’t want to have anything to do with it. We will give you a phone number. I think that’s just a cop out. I really do. (W8).
The scenario where self-administration of the lethal medication was supported within AHC but not practitioner administration, was also seen by many as an unacceptable compromise that would fail to meet any community expectations:
This is sort of a halfway – half-in, half-out. I don’t think we felt it was a typically good way to go… You either offer the whole lot or don’t offer it, but that’s just – you know, bucket half empty. (W2).
Some participants believed that the community would expect patients to have all their choices around VAD access supported within the facility, including in the assessment process, assistance in finding doctors with the suitable qualifications, and support for self-administration of oral medication or intravenous administration:
Overwhelming the priority of Hospice should be to support patients’ wishes to access their rights under voluntary assisted dying legislation. (W4).
All participants agreed that the community does expect to be able to receive holistic end-of-life care close to home, which for some, that would include an expectation of access to VAD from a local palliative care provider:
A lot of our customers have come here to retire. This is the place where they want to finish off their life. If no one in town accepted this responsibility or went with this decision, that kind of impacts that whole family scenario as well. (W7).
Concerns were raised where people would go instead if they chose VAD but the Hospice did not offer support around it. However, there was also an understanding that many people choose to return to their own home to die if possible.
Participants reported that provision of a VAD navigation service for those outside the local area would not be within expectations with concerns about costs, staffing and training, and a perception that the community may perceive this as unsafe involvement in VAD when the core business is providing palliative care.
Opportunities Arising From Vad
Participants suggested that the VAD Act provided opportunities for ACH to play a leadership role in the community, including becoming an education provider about palliative care, “putting additional resources into promoting palliative care” (W2), and increasing awareness of the normal processes of dying.
It was also believed that the Hospice could “take the initiative” (W3) to lead discussions with other healthcare providers to support a local whole-of-system response for patients who wanted to access VAD. This was described as core business and a way to mitigate any risks around negative community perceptions:
The community needed further education on what palliative care actually is and the difference between palliative care and voluntary assisted dying might not always be clear. (W3).
Business development opportunities were seen in providing this education and in more support for patients at home. It was considered that the latter may include a fee-for-service model providing patients with more home-based palliative care than currently available and a nursing presence at the time the VAD substance is taken or administered such as a “death doula” (W2) role. It was suggested that “we going to be a lot busier, a lot more demand” (W9) although this was balanced with an understanding that “history tends to show that more people get the go ahead for this than actually ever really do it” (W4).
Risk To Hospice
It was seen that there may be a risk to Hospice’s bed occupancy if the Hospice offered VAD. Issues raised included the loss of being considered a safe place, a negative impact on the Hospice “brand” (W5), the “stigma about going into the Hospice and not coming out” (W7) and a perception that Hospice is promoting earlier deaths.
Negatives expressed by participants included that the possibility of ACH supporting VAD could be described as “a travesty” (W5) with the “potential to polarise the whole community” (W3) and expose staff to “abuse from any crackpot in the community” (W9). The risk of degradation of the palliative care culture was also raised - “there is a crossing and palliative care will never be the same again” (W1).
Participants also mentioned the potential loss of fundraising revenue, support and goodwill during discussions about lack of uniform community views:
It would be quite dangerous ground for a community group like ours, even with our fundraising, our community presence, that we’re going to be causing a bit of a division there. (W1).
The possibility of a division between staff and volunteers was also discussed, and the chance of burnout if only a small number were willing to care for patients dying by VAD.