Hinauri Phase 1

Challenges

What Health Professionals, Funeral Directors, and Spiritual Support People Thought Impacted Their Ability to Support Whānau

Barriers

Whānau difficulties in Accessing Assisted Dying Information

Duncan (palliative care doctor) reflected on his experience of supporting patients who had an assisted death (AD). He thought access to assisted dying information and differing perspectives about assisted dying hindered people’s ability to make an informed decision about assisted dying. However, he believed every health professional can provide a ‘level’ of information to support the tūroro and their whānau access information about assisted dying:

Oh, I think often people don’t have the information or don’t know how to access the information because really… it isn’t that straightforward you know. It can be done but you have to be quite self-literate or tech savvy these days and, most people are but not everyone is and so they might have asked other people for help with this information and [they] might not have been helped by helpful people; it could be their own GP or whatever it is – other specialists.

Sometimes they don’t always get good information or sometimes they get dissuaded or even obstructed in some cases and so, we can often see people in our clinics or in our inpatient unit or out in the community and they don’t know how to ask for this information… but they do!… We have a responsibility to at least point them in the right direction… if our staff member’s a conscientious objector they might not be able to provide much information but as I said, there’s levels… you might not want to be involved in the actual procedure itself but you’re okay to talk about how to access that procedure and other things and so there’s levels of, conscientious objection, levels of involvement.

And some… can choose not to be involved at all and they have to say, ‘oh no, I’ll find somebody else who is able to talk to you about it.’ And over the last couple of years, we have developed more and more people who are able to talk about it [in our service] not just one or two doctors and one or two nurses but a range of multidisciplinary people.

So that… if people want access to the information, we can provide ah either face to face or they can look it up themselves; and the more tech savvy people they would have done, researched it themselves, they would have looked into it. But not everyone is in that space. (Duncan, Palliative care doctor)

Brennan (assisted dying attending medical practitioner) was unable to advise how to best support whānau in having access to assisted dying information. He felt the information may be difficult to digest because of the weight of the process and he thought this was an issue of the health system:

Honestly like I don’t know, I don’t know how you communicate that information without looking really bad. Like, so ‘here’s all the information about assisted dying’ it’s like you know not an easy pick-up for someone to run with; this is how bad our health system has got and it’s like, yeah. (Brennan, Assisted dying attending medical practitioner)

Privacy and Patient Anonymity Used to Over-rule Māori Data Sovereignty

Gypsy (hospice, kaitakawaenga) highlighted the barriers of accessing assisted dying information formed by the EoL Act policy are part of a larger picture of power and control over mātauranga Māori health information:

I think it goes back to that power and control. And about a system that’s been imposed, and it’s framed under the, the position of privacy. So, it’s about patients’ privacy, patients’ anonymity and not releasing information because they think that it belongs to them. I find it a difficult situation…

I remember [name of Māori politician] talking many, many years ago about hospitals – they’re wanting… Māori information from hospitals and they were denying them access to that and you know him saying ‘but it’s our information, you don’t own our information.’ But once again, they come over top and, and it belongs to them, it belongs to their system. It actually belongs to us. It’s actually our mana motuhake it’s actually our tino rangatiratanga, it doesn’t belong to them. (Gypsy, Hospice kaitakawaenga)

The ‘Gag’ Clause Prevents Health Professionals from Raising Assisted Dying with Whānau

Duncan (palliative care doctor) gave an example of offering palliative care options to cancer patients which is difficult because often they cannot afford the cancer treatment options. However, he compared this with being hampered by the legal safeguard in the EoLC Act which prevents a health professional from raising assisted dying with a whānau unless they speak about it first:

For example, an oncologist would have to talk about all the private chemotherapy agents that are available in the private sector to any patient that is in front of them, even though, you can tell obviously that this person, there’s no way they can afford those private options…

I always found, when I worked in oncology clinics, I found that was difficult, you have to tell them about all the options that are available but, they weren’t really available. They were available to some small amount of people who have a lot of money and have the right insurance but to ah most New Zealanders it would not be available, and I found that was really [difficult]. So, you had to talk about all the options that are available, despite them not really being, but in this case with assisted dying you can’t talk about it at all unless the person raises it.

… I think the gag clause… not being able to raise it as an end of life option is to the detriment of people, because there are cases where you think that ‘oh yeah, given the situation that they’re in… whatever you’ve got will probably get worse’. And pain is one of those big things; it does get worse and the longer a person lives. And so, in some cases you ah worry that your own pain relief (we’re pretty good at providing symptom control) [might not be enough cover]. (Duncan, Palliative care doctor)

Hine (hospice nurse in a rural community) explained that the assisted dying ‘gag clause’ meant there was a gap in the system. Māuiui people are not being given enough support when they are interested in exploring the option to have an assisted death. Hine questioned where the supports were in accessing information and going through the assisted dying process for a person she was caring for:

[The tūroro was trying to answer] questions and trying to find answers about the whole [AD] process in itself and, and it was such a short time [before she died]. You know she [tūroro] came home and then from the time that she was home until the time that she passed away, it was such a short time… was she given the [information?]

… was she given those supports in the first instance to know that what, what was her pathways to the assisted dying process? You know and what were the supports? … There were not… I totally 100% agree with that. Because it wasn’t, it wasn’t hospice because we weren’t allowed to [discuss assisted dying]; we’re not allowed to do that mahi. Yeah… there was a gap. (Hine, Hospice nurse, rural community)

Whānau Hold Different Perspectives on Assisted Dying

Whānau could hold different perspectives about assisted dying (some supportive and others not supportive) which may have meant some māuiui family members chose to keep their assisted death private to maintain their mana motuhake:

Other barriers [to having an AD] could be their own whānau – ah not feeling safe to talk about what they want to do…with their own whānau, so that’s a barrier. Oh raru, you know, definitely raru. People not agreeing. People being brought into the journey later. And, and the, the, the choice you know of the person that’s decided what they want for themself is not respected and that the mana is taken away from what they want because it becomes about everyone. So, it’s yeah, I see a lot of things. (Moana, Hospital liaison coordinator)

End of Life Care Options Not Easily Accessible Through Hospice Services

Pania (hospice, kaitakawaenga) recalled an experience with a Māori whānau who were fearful of using hospice services when their mother was dying due to a negative past healthcare experience. Pania considered the need for information to be provided so that whānau are aware of what medication is given to tūroro, so whānau feel involved in their end of life care:

[T]his is probably more of a hospice thing… sometimes people were fearful of hospice and that we had the drugs and the ability to do something outside of people’s choice… I had one Māori whānau who had an experience in the hospital where her dad [was] This is her experience… she walked out of the room. The doctors gave her dad something and that was it – he didn’t get to speak anymore; he was sedated too much to [talk]. And so, you know she was so fearful of us; she was like ‘don’t you do that to my mum; don’t you give [her…]’, even though we don’t have the drugs or the things that you know she thought that we did.

So, that was one you know different experience, and you know people being like you know people going to do morphine pumps and stuff they’re like ‘what are you going to do?’ Just some education around that which is kind of like, not assisted dying but, you know they think we have the power or the intent to do something against their choice (Pania, Hospice kaitakawaenga)

Hospices’ Position Themselves as Conscientious Objectors

Because some hospices position themselves as conscientious objectors it can create barriers for tūroro to tell hospice staff about their desire to have an assisted death. Sometimes, tūroro and whānau may exclude hospice from knowing about the tūroro’s plans to have an assisted death because they do not trust them; knowledge of hospices’ conscientious objection stance can be off-putting for tūroro. This conscientious objection stance can impact relationships between staff and tūroro/whānau. Hospice staff may not be aware of the tūroro’s choice to have an assisted death:

And in those cases where it’s [AD] been carefully planned… that we’ve had [news] it’s all gone quite well. But these ones that didn’t go well and caused ethical dilemmas were because of this [gag], not allowed to talk about it… where you know it’s yeah, you’re not out in the open. (Harriet, Hospice nurse)

Gypsy (hospice, kaitakawaenga) commented on her experience of discussing the Assisted Dying Service with her Māori hospital healthcare team who had said they would ‘not relay the information to whānau’. She gave a wero (challenge) to them that if the information was accessible to whānau it could be empowering and a gift to some:

We took it to the hospital and to the Māori health team there. And talked to them about assisted ah [the] End of Life Choice Act and… they had a really strong stance about ‘we don’t want to know about it.’ Because if one of our whānau or any of our patients come and ask us we would say ‘no, you’re not allowed that you know, that’s- it’s not Māori.’ And… I said to the guy ‘you know what, I would advise you that you read it because the information in there could be empowering, and you may be able to gift that to someone else.’ (Gypsy, Hospice kaitakawaenga)

Hine stated that hospice values and mahi are not aligned with the wish to hasten death:

I think, it’s about the whole kaupapa where hospice, that’s not their mahi you know. Their mahi is not to hasten or fasten death it’s to, you know, the way that we make it [easier], we use the pain relief, we use the anti-nausea medication, we use the- you know, this and that to calm them – that, that is the mahi. Well for hospice that’s what they do. They don’t do the whole, ‘we won’t talk about you ending your life’. It goes against hospice values and morals and, their policies and their contracts and everything else. (Hine, Hospice nurse, rural community)

Harriet (hospice nurse) reported that her colleagues saw themselves as conscientious objectors against assisted dying which she felt caused stigma and mystery about assisted dying in the workplace:

And then we worked really closely with the hospital as well and I think like a few times patients at the hospital had mentioned it there, but the hospital nurses as well said ‘no, no, no we don’t deal with that in our little rural hospital.’ And they didn’t have a process at all about what to do when a patient asked.

We had a physician at the time that used to come over from [nearby town], and she didn’t talk about it. She knew a lot about it, but we didn’t discuss it, but she did [and], was there if we needed to talk about it. So, there was a lot of like mystery. No talk about it. (Harriet, Hospice nurse)

Secrecy Created by Lack of Education and Conscientious Objection Position

Moana (hospital liaison coordinator) commented on the secrecy associated with assisted dying. She suggested it is important that healthcare professionals and allied staff become educated about the assisted dying service:

I think it’s very political at this time. I think that it’s a subject that they don’t talk about or they can’t talk about it, but I also think it needs to be delivered in those spaces for the teams to understand what’s going on so that when they’re approached by whānau they can direct stuff. You know, they knew which pathway you know to direct [whānau]. There’s a core team in the organisation that, that hold forums, that hold kōrero that hold seminars. And, and deliver this to staff. (Moana, Hospital liaison coordinator)

Gypsy (hospice, kaitakawaenga) disclosed how her place of work positions staff as conscientious objectors of assisted dying. Gypsy said she has witnessed an increase in secrecy and stigma about tūroro who want an assisted death:

I have heard very little of assisted dying. I think only because I’m in the hospice do you hear like little rumours… because our hospice is a conscientious objector. In fact, when… end of life bill came in there was a big seminar around what we can and can’t say and we were not allowed to talk about it. Anybody mentions it then you say, ‘I will now refer you to someone else’, so you weren’t allowed to engage whatsoever.

What I do though know is that people have moved [on from that positioning] because we have a hospital on our premises as well. We have an inpatient unit; we have a community team and then we have an ARC service – hospitals. So, people have left the hospice and been wheeled over to the hospital and had assisted dying there. (Gypsy, Hospice Kaitakawaenga)

Nurses’ Milly, Harriet and Peggy discussed how they support patients navigating the end of life within their hospice service even though the hospice positions itself as a conscientious objector:

Harriet: So, it’s been, yeah ‘don’t talk about it.’ And then a few people have asked us about it and …we had an ethical situation… which came up for us which… involved assisted dying which was tough. So, we didn’t know much about it. We’ve had a sprinkling of patients that have proceeded [and] gone through the process. They’ve taken the [assisted dying information] card [and] done- made all the arrangements themselves, not discussed it with us… because whether they knew hospice was conscientious objectors? But we don’t say we are, I don’t.
Milly: I do. Well, I say that you know hospice [is a conscientious objector]
Peggy: As an organisation
Milly: As an organisation and here’s the card. (Harriet, Milly, Peggy, Hospice nurses)

Milly reflected on her role as a nurse in end of life care and how she felt she was doing a disservice to her patients because of the hospice’s conscientious objection stance. She felt she was unable to offer holistic care to her patients because of the assisted dying ‘gag’ barrier:

… as the nurse I don’t ever feel like that I gave the patient you know, complete holistic care because I couldn’t discuss what they wanted to do with [assisted dying]. And I’ve struggled with that, especially with one of them who did just go and do it and I had no knowledge of it. His family had no knowledge of it. And I thought perhaps if… we hadn’t been conscientious objectors and [were] allowed to have more open discussions [tūroro] would have he had more open discussions with me? He may not have; it may not have changed anything.

But I just think ‘are we doing things right as hospice’ you know? Throughout they’re interviewing GP’s and things, but are they interviewing hospices and nurses and you know saying, ‘what are your experiences? How has this [conscientious objection stance] affected you with your patients?’ The GPs are just you know really [only] doing the referrals; we’re dealing with these patients. (Milly, Hospice nurse)

Nui (hospice nurse) felt that the secretiveness around assisted dying caused barriers for informed decision making for whānau; the safeguard in the EoLC Act made it uncomfortable for hospice staff caring for tūroro in the palliative care service:

I haven’t had training in it [AD]. My understanding is [eligibility criteria include] a life limiting illness, less than six months [left to live]. Yes, but I think due to the secretiveness (the sort of weird discomfort around the elephant in the room), I think that that impedes knowledge for all staff to be really comfortable and cognisant of it. (Nui, Hospice nurse)

‘Missing the Boat’ - The Six Month Time limit

David Brown (assisted dying attending medical practitioner) was concerned about the six month end of life timeframe to meet the criteria for an assisted death. This meant people who wished to hasten their death may be too late because of the length of time it takes to have the two assisted dying assessments. David said this had happened to one of his patients due to her health deteriorating before the assessment was complete:

… sadly, she [tūroro] was very late [in applying for an assisted death]. She’d already had the discussion, made the choice and she really was- she was relatively well. And, and that’s what we often see with people, they’re relatively well functioning – quite well.

In the last 2 or 3 weeks people go downhill very rapidly. And the problem is… a couple of months ago we’d discussed assisted dying and she hadn’t activated [that option] and really, we talked about it and [she] said, ‘oh well, you know, maybe, maybe not.’ And then when she made that decision… the problem is that the doctor who has to do the assessment has to arrange to meet the patient – has to have a proper interview, has to be sure that they’re of sound mind and that’s what their decision is.

They then have to have that subsequent discussion, discussion with another doctor and order things [medications] and it generally takes a week to process, at least. And so, this is a stumbling block for a lot of people is that they feel, or they’re not aware, that…it may take potentially up to 2 [or 3] weeks to get it sorted.

So, if people have made the decision but [are] not committed to it, and then they commit to it sort of too close to the, to their death, then they miss the boat. (David Brown, Assisted dying attending medical practitioner)

Eligibility Requirements

The six month palliative care criteria (that is, people have to have a terminal illness that will end their lives within the next six months) does not support all palliative care conditions. Michelle (hospice nurse) suggests reconsideration of the six month criteria:

The six-month prognosis… I get why it’s there. It doesn’t work for all palliative conditions. Particularly your things like motor neuron disease where you know when the prognosis is six months [because] they’ve lost their verbal ability to consent but not necessarily their cognitive and so, yeah. Yeah, I see why it’s there; I think it’s slightly extended timeframe or maybe some exceptions to that six-month rule would be, that’s maybe the only thing. [Regarding an exception prognosis for example] Yeah, motor neuron [disease], your kind of degenerative diseases where they are going to have you know, no quality of life and need full care at some point but it’s hard to put a timeframe. (Michelle, Hospice nurse)

The ‘Gag’ Clause

Michelle (hospice nurse) reflected on the EoLC Act safeguard which prevents health professionals from raising assisted dying with the tūroro. She explained that once a tūroro enquires about assisted dying staff are free to discuss it and provide information:

Well, the reality is the patient does need to bring it up first and it needs to be the patient not a family member or, it needs to be the patient. But then once they’ve asked, you’re free to have that conversation like you would anything else and so, it’s like establishing ‘how much do you want to know? What, do you want to know, what the process looks like?’ And talking through the information you’re giving them, not just a [contact referral] number. (Michelle, Hospice nurse)