Palliative Care – some re-imagining: interview with Rod MacLeod

Thank you so much for your time, Rod, I really appreciate it. I’ll just start by telling you a bit about the book, as it’s emerging. It’s in three parts. The first looks at resistance to death, essentially how I see Western cultural ways of being with death. And then there’s a section on what I would call acceptance, where there’s a loosening up around death, and finally surrender – what does surrender look like? What is it to really honour the call of death and go with it?

In terms of your contribution, one thing I wondered about in terms of New Zealand society, is what you feel we could be doing to make it more possible for people to die at home?

Well, let me take you back to my experience in New South Wales in the past five years. The percentage of people who die at home (in Australia) is between 14 and 18%. The New South Wales Health Minister decided that she wanted to see if that could be changed. So, she asked people to come up with a ‘game-changer’. It had always struck me that the main reason people don’t die at home is because the families get tired, or the families get frightened, or occasionally there’s no Primary Health Care near to support them. So, our proposal for New South Wales was a two-pronged attack: we would firstly develop an online resource, which is now called the Palliative Care Bridge. (http://www.palliativecarebridge.com.au/) It contains about 70 short videos about death, dying and bereavement, and it’s open to anybody and everybody. Originally it was intended for GPs and community nurses, but then I found that I started telling families about it.
    So that was a small component. The biggest component was that we trained about 800 care workers in 400 towns around New South Wales. They were wool-graders and bus drivers and shopkeepers, people who decided that they just wanted to support people to stay at home to die. Just before I left, we reached our 2000th family that we cared for, and the percentage of people dying at home was in the mid-70s. So, by anybody’s measure, I think you could say that was a success, shifting from less than 20%. We were criticized at the beginning because there were people who wanted more specialist doctors or more specialist nurses. But actually, what people needed was somebody who wasn’t frightened. In fact, running alongside that, I’ve been supervising a PhD student who was looking at what was perceived to be a good rural death in New South Wales, and essentially, a good death has been equated to a home death, or a home death is equated to a good death. In fact, what this student is proposing, which I think is right, is that a good death is a safe death. And that’s what these care workers are able to provide. And so, I think that having a concept of safety in the narrative around death and dying is what people want. You can extend that if you like, to the arguments about assisted dying, because one of the reasons that people want assisted death is that they don’t feel safe. They want a degree of certainty and the only way they can get certainty is to say, ‘Well, kill me’. And if people felt more safe with having adequate palliative care, then I think the pressure for change would not be so great.
    So, the question what do we do in New Zealand? Well, you know, there are some areas in New Zealand where the home death rate is very high, over 70%. But having support for families, so they can get a night’s sleep, or support for families so they have somebody there who isn’t frightened of dying, or somebody else’s dying, would go a long way to making a difference.

So that’s key isn’t it, having somebody who’s not frightened.

Yes. In fact, that goes all the way back to when I was doing my own PhD. I was interested in the family’s perceptions of what’s different between a palliative care doctor and a doctor in a tertiary hospital, and the commonest answer that I got was, ‘You’re not afraid’.

Mmm. I get that.
So the care workers you trained, were they paid, or did they work voluntarily?

We paid them. They were paid virtually the minimum wage. Each family was allowed 48 hours of care, on average. Some needed a lot less, and some needed a bit more, but yes, the care workers were paid. It was a success.

Does it continue?

Yes, it is still going, and the Ministry of Health in New South Wales is making a decision about whether to keep it going further, which they probably will. [Rod heard recently that it has finally been discontinued, sadly.] The big decision will be whether we would be allowed to deliver it all across New South Wales rather than the half of New South Wales that we currently have.

So is ‘we’ the Hammond Care Consortium?

Yes, and it also includes Calvary and Sacred Heart.

So, clearly something parallel here in New Zealand would be very good.

Well, in fact, I think they’re doing a similar sort of programme down in South Canterbury. And in fact, here on the Hibiscus Coast, when we need additional support to help people stay at home, sometimes we can get that and it makes all the difference. There are some government agencies which can supply that help. But one of the things that made a difference in the communities that we did the teaching in was that people felt their learning was a community activity, and so it was a way of changing the community’s views on death and dying. That was an additional value that we hadn’t counted on – that all these people who came to the education were then able to educate their communities about what was possible.
One of my favourite stories is about a woman for whom it was her first time looking after somebody at the end of life. The patient’s daughters had been doing most of the caring and they went to bed and left their mother with the woman. The patient started getting a little bit agitated. The woman was not sure what she should do, but she noticed a Bible on the bedside locker. She wasn’t a Christian herself, but remembered what had been said in the coursework when we talked about spiritual distress. She thought, ‘I know what I’ll do’, and she opened the Bible at page one, Genesis, and started reading. And everything was fine. The woman calmed down. She called the daughters in and the lady died. She knew the right thing to do. It was lovely.

Yes, she was responding to what the woman needed, or what she perceived her to be needing.
I have had some conversations with a woman in North Canterbury along the theme of death-ready communities. The kind of training that you speak of could easily be part of something like that.

Yes, well Allan Kellehear talks about that a lot when talking about compassionate communities and making sure that there’s information in public libraries and schools and so on. One of the pleasing things here since I’ve come back, is I’ve been asked to go and speak at schools about palliative care, usually using euthanasia as a vehicle. It’s a way in. I spoke to 300 students last week at one school and they were riveted. They really wanted to know. So that was very pleasing.
But I think with a community-based hospice, the benefit in New Zealand is that communities all warm to their local hospices; I don’t think there are any really that are struggling. And the perception is that it is their hospice, not a government hospice. Certainly, when we did some survey work a few years ago, the majority of people who were surveyed knew that they had a hospice in their community, and what its name was, so that was good. I think we just need to broaden out the conversation a bit and have more discussion about what hospice is, because there is still such a lot of confusion about what we do, or don’t do. There are still those who think that we help people on their way – actively encourage their dying.

I wasn’t aware of that perception around hospice.
So if you if you could change or re-imagine anything in hospice care in New Zealand, what would that be?

Well, I would probably encourage people to have less focus on the in-patient hospices and more focus on caring at home, and to try to normalise dying so people have a sense that they are living until the end of their life, rather than waiting to be dead. I think part of the challenge of the current debate around assisted dying is that people think that dying is going to be dreadful and it’s going to be boring and it’s going to take up a lot of time and resources, whereas the focus ought to be on helping people to live, to live as actively as possible until the last day of their lives. So, people are more likely to do that in their own homes than they are sitting in an institutional building like a hospice. So, re-imagining it would be making sure there was as much focus on the community as possible. At the same time, I would hope to try to engage schools and businesses, just to make sure that they knew this was their facility, this was their programme, and that we’re trying to adapt to local needs. Because New Zealand is becoming so diverse in its population, the western model of palliative care isn’t going to suit everybody, so we have to try very hard to engage more actively with as many of the community as we can, to open up discussion as to what, for example, the Korean community or the Pakistan community or the Chinese community might want us to deliver. We haven’t really delivered adequately for Maori, yet, because Maori people don’t necessarily like the notion of an in-patient hospice. We need to be sure that we adapt our services to what a particular family wants. That requires less focus on medical care, and more focus on the person. We pay lip service to what used to be called patient-centred care, which I think now should be called person-centred care, because in order to do that you have to understand who the person is.
Now we spent ages talking to medical students about getting to know the person, but part of my re-imagining death would be to have it front and foremost in medical and nursing undergraduate programmes, which it isn’t, it’s an add-on – a very small add-on. And if we’re going to re-imagine death, we have to have the medical schools and the nursing schools take seriously that every single doctor is going to have to look after people who are dying. And yet we get a couple of days out of six years; it’s pathetic. The biggest failing of my professional career is that I haven’t been able to persuade universities to change. It needs to be involved in every aspect of undergraduate education, so when you’re talking about heart disease you talk about how people die of heart disease, and when you’re talking about kidney disease, you talk about how people die of kidney disease. But palliative medicine is not the sexy specialty. You know, we don’t have machines that go peep and ping, like a lot of the other ones do, but the joy of palliative medicine is that you get to work with people, just who they are. We don’t work with a carcinoma of the colon, or cerebral metastasis, we work with Betty Smith who has those things. The students like that. When we teach them that, that’s what they want, because that’s what they think medicine’s going to be about. But they get socialized wrongly, I think.

That’s very interesting, Rod – so this is students towards the end of their training?

Yes. If I had my way, I would have them come every year. When I was teaching clinical skills in Sydney, I would teach the students how to examine a heart. I would use somebody who was near the end of their life. Students knew that this was somebody who was dying, and at the end of the year, they had no fear of
talking to, listening to, people who were dying, or examining people who were dying. It was their norm. I think what I said in my PhD thesis was that you learn about the care of people who are dying from them, not from people like me, or somebody else giving a lecture or a TED talk or whatever it is. You learn about people who are dying by listening to somebody who’s going through it. And that’s another beauty of palliative medicine – you learn every day, something different. I’m looking after a 35-year-old woman at the moment who is dying, and every time I have an encounter with her, I learn something new about the human spirit. It’s fantastic.

Do you think the reticence to think about and train about dying right through the clinician’s training is tied up with the general fear of death?

Yes. I had the chief executive of a major teaching hospital in New Zealand once say to me, ‘I don’t expect people to die in my hospital’.

(laughing) I think I’ve heard you say that before. And I’ve encountered something similar.

Medicine’s often about doing heroic things. And I think there is still that feeling that if somebody dies, it’s a medical failure.
Part of the problem in New Zealand is that there is a shortage of medical specialists in palliative care, and therefore a shortage of people to teach about palliative medicine. We were rather short in North Sydney, too. I discovered in the hospital I was working in there were seventeen cardiologists and one palliative medicine physician. It’s absolutely ridiculous. Those specialties that have been around a long time carry more weight, and because most of the specialties don’t really understand what we do, then they don’t necessarily value it. I still think that some of our colleagues think that we just sit at the bedside with a cool hand on a fevered brow and fill people with morphine. They don’t recognize it as being a complex medical specialty.

But the students who do come to you, you find they love it. Is it a voluntary component?

Well, there is a small compulsory component but they can opt to spend more time, and some of them do. Things are changing; I’ve got a colleague in Dunedin who is responsible for some significant changes in the curricula through the Otago School of Medicine, so that’s good. Things might be changing slowly.

Let’s hope so. And even if you don’t see the shifts yet Rod, I’m sure that your speaking to this over many years will find its expression in time.

Yes, and I think another part of re-imagining dying is persuading the media to adopt a different stance. Just about all the mainstream media are frightened of death. They love to tell stories about bad dying or distressing dying. They love to support the idea of euthanasia, most of them, rather than saying, you know, the majority of dying is good, gentle, calm . . . yes, it’s sad, but it doesn’t have to be hurried, and it doesn’t have to be painful, and it doesn’t have to be noisy. I think if only they could see a different side of dying, that would change the public perception.
You know, I often imagine that a reality TV programme or play about life in hospice would be so helpful for society. I have a friend who is a TV producer. He and I hatched a plan over a few years to try to get money from New Zealand On Air to do a kind of fly-on-the-wall documentary, but they weren’t interested. Death doesn’t sell.

I think it’s time will come.

Well, when I was selling my first poetry book, a colleague fixed me up to meet a PR company in London who he thought would be able to sell the book. And this PR company said, ‘Well, you won’t sell it the way it is. We’ve got to make it sexy’. What they wanted to do was to turn it into a kind of picture book and sell it at the checkouts in Sainsbury’s – which may not be such a silly idea, but I didn’t have the energy to do it at the time

That brings me to a question about your use of poetry, because my understanding is you produced the two volumes largely or partly to support students in their explorations.

Well I did. That’s how it started off. When I started teaching about compassionate care, I used to use poetry and music and art to illustrate how you might imagine yourself in the place of somebody else, because it’s one thing hearing about an impending death or a bereavement from me, but if you read a poem, it can trigger off an emotion that you may have had yourself, and by having a series of poems from a series of angles, my hope was that people learning, like students but also family members, might be able to dip into a book and say, ‘Oh gosh, that’s how I feel today’. Or, you know, two weeks later dip in and find another poem which was taken from a different stance and say, ‘Gosh, here’s another one that I feel like’.
I’m not quite sure how successful I was. I think what happened with the first one was that I used to have a copy of it sitting outside the consulting room in the hospice in Dunedin where I was working. Families would sit there flicking through it. And subsequently I got sent a number of poems by people who had never written a poem before. And what they were doing was just saying out loud how they were feeling. So, I thought to honour them, I’d put as many of them in the second book as I could, and I think it’s added great value. Some of them are not fantastic poems, but they are unique, heartfelt tributes to the people whom they loved. What we are doing now is giving away some of the books to people on the programme that I’m working in, using them as aids to people’s adjustment to loss and grief. Every now and then the nurses come and say, ‘Can we have a book for Mrs. Smith?’ So, we’re giving some away as an aid to grief, which is how the first book was used. People would buy it and give it to their friends who were grieving. The second book hasn’t been so well publicised, but we’ve sold quite a lot and it’s been of value. I’ll continue to use them when I teach the students. I just think it’s a neat way of, rather than reading a novel, you can read a page of poetry and realise what somebody was feeling in that moment.

Yes, poetry touches us in a different way.

What I originally hoped for the first book was to use some New Zealand Symphony Orchestra recordings for a CD called Music To Die For which would go with the book . . . so you could listen to some bits of music at the same time as reading the poems. And we got quite a long way along the line, but then James Judd, who was the conductor at the time, went off to Chicago. I’m still working with a colleague in Sydney and we’re thinking about resurrecting that project, using music to trigger emotion. We’ll see.

I’ve got a question – I want to leap back a bit. You spoke about living every day until you die, or something like that. One of the things that has bothered me for the last few years is the idea of people missing their death – either of still battling their illness to the end, or even just a lack of awareness that this is an important journey and threshold. So the idea of living every day till you die doesn’t quite do it for me, because it seems to take the focus off the work of dying, or the journey of dying.

I understand what you mean. I don’t think it needs to take away from the work of dying. I think you can live actively at the same time as acknowledging that you’re dying. I always remember when I started in palliative care . . .  I was working in Bath, in England, in a unit run by nurses with the help of GPs who had a bit of an interest. After about a month, a charge nurse said to me, ‘You know, Rod, I never realised people could die with their eyes open’, meaning that they were conscious and alert, because a lot the time these people had been medicated because that was the perception of how you should die – the Victorian death bed scene.  So dying whilst you’re alive is something which a lot of people must strive for, and it’s not uncommon to have stories about people who have acknowledged that they have a terminal illness and they’ve tidied up their affairs. They’ve worked through a whole lot of process and they get on with their life and then they suddenly die. They’ll get up out of bed, sit in a chair to have a cup of tea, and die. We had one of those just two days ago. So that’s the sort of thing that I was meaning, not an attempt to pretend that you’re not dying.
    You mentioned right back at the beginning this idea of acceptance, which I think is actually very rare, in my experience. I think that what Elizabeth Kubler- Ross chose to call acceptance is, a lot of the time, resignation. People think, ‘Oh well, I’m dying and there’s nothing I can do about it, so just get on with it’. But true acceptance, those people are in the transcendence. The way I describe it to the medical students is that quite often when I go to see somebody there is an exchange of energy, and when people are very sick, they very often draw energy from you. So that is quite exhausting. When you’re working with people who are transcendent, you come away from those interactions feeling energised. You think, ‘Oh, I feel better than when I went in’. It’s not the same as when somebody is not entirely engaged with what’s going on and they’re kind of pretending. Very few people reach a level of understanding where they really are living in the transcendent. They know something that we don’t. They’re experiencing something that we don’t. That young woman I was talking about is like that – it’s an absolute joy to spend time with her. And you come out feeling better than when you went in. These people are rare.
Now if I could re-imagine dying, I would find a way of helping people get to that stage.

Yes!! That’s so much what I want my book to be about!

I don’t know if I’ll ever do that, because I think it’s got to be an internal process which helps you to get there, and it’s so difficult to explain to people – that difference between resignation and acceptance. But if your book can illustrate that, it would be a huge plus.

Well, I hope it does. And I do think it’s an internal process, but it’s also about societal and cultural shifts. What fascinates me is that fear of death is not universal; it’s not in all cultures by any means.

No. We just have to continue to learn from each other about how to do it differently.

Great. So unless you have anything else to add, that sounds like a good place to call a halt.

I need to go back up to the ward, now. I’m really excited to see what you come up with.

Thank you. I am too. I have to say, this book rather has a life of its own. But it has my commitment.
Many thanks, Rod.

For context, I have worked in palliative care since 1988 – firstly in Bath in England and then in 1994 we came to New Zealand where I worked at the Mary Potter Hospice. I was appointed Professor in Palliative Care (NZ’s first) in 2003. I later came to Auckland for a further ten years before being invited to work in Sydney with HammondCare and as Conjoint Professor at the Sydney Medical School, University of Sydney.

I came home after five years; it was a very invigorating time with much innovation, I loved it but I loved being home more! I then worked at Hibiscus Hospice (now Harbour Hospice) for a few years, finally giving up my clinical work about two years ago. I still work for HammondCare as an associate with Dementia Support Australia, helping their consultants understand about palliative care for people with dementia. I also chair the Clinical Committee of The Violet Initiative which is a social enterprise that exists to reduce regretful outcomes in the last stage of life for Australians, their caregivers and their families. Violet provides free services, programs and resources to anyone in the community who is caring for someone in the last stage of their life (in either an informal or formal role) to help them be better prepared and supported during that time.  I am the Clinical (Medical) Advisor to the Board of Hospice New Zealand, a role that I love and hope to continue.

Rod MacLeod

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