Cranford Hospice – Dr Libby Smales

[Background noise]

I’m at Hastings Public Library; it’s 14th May [2019]. Jim Newbigin, listening to ex-director of Cranford Hospice, Doctor Libby Smales.

Joyce Barry: Evening, everyone. Before I introduce Libby, I think it is timely, this subject … dying. My mother-in-law said it’s a date we all keep, which was not great news every time the subject came up; but it is. [Chuckles] So we go from euthanasia, to right to life, to dying with dignity – all these terms that float round. And I think this is a wonderful time because Libby’s been in this field for so long, with a lot of experience. [Laughter] So it is our pleasure on behalf of Landmarks to invite you tonight; Doctor Libby Smales. She was Director of Cranford for many years, and has kept a very high interest in the subject. So over to you, Libby; thank you very much.

[Applause]

Libby Smales: Thanks, Joyce. Just before I begin, thank you very much for inviting me. It’s a bit daunting actually, talking to so many people I know. [Chuckles] I think I’m better when I don’t know anybody. And so to give me courage I brought Pip [dog] with me, because she made such a difference to so many people over so many years.

So I was asked to give a bit of the Hospice history; so what I’ll do is talk about the older history, and then my history with Hospice and Cranford, [phone ringing] and then a bit of a global overview, and ask you questions about where you think we need to go from here. So hopefully, my talk will be relatively brief, and then we can have questions.

So the history: the word comes from Latin … hospice. And curiously enough, like a lot of Latin words, it relates to both guests and hosts; and it’s a common root to go along with other familiar words. In the Middle Ages it referred to a safe place for travellers at a time when we walked, or if you were lucky, we rode on a mule or a horse. Travel was very different; often very hazardous, and some of these old hospices still survive as inns, and you can actually go and stay there.

There’s also a history from England; St Bartholomew’s Hospital in London where I trained, in Smithfield, was actually founded in 1123 [coughing] by a monk called Rahere who, oddly, was a favourite courtier of Henry I. I’ve no idea how that worked. [Chuckles] Anyway, it was founded for the care of the sick and the dying – the spelling was a bit different – and it survived in spite of all sorts of things, like the dissolution of the monasteries, and lack of funds; until in 1546, Henry VIII, believe it or not, gave the hospital a royal charter as the ’House of the Poor in Farringdon in the suburbs of the City of London’, and Henry’s statue still stands over his gate. It’s the only statue of him in London, and I used to walk under his legs every day. [Chuckles]

As there were very few useful interventions available at that time, the care was mostly of the dying. [Phone ringing again] And so it went on. By the nineteenth century there was an assortment of Homes for the dying, mostly attached to religious foundations; and in 1879 the Irish Sisters of Charity founded Our Lady of Charity Hospice in Dublin, and sixteen years later, St Joseph’s in London. And if you look at the stats, [statistics] TB [tuberculosis] was the most common cause of known traumatic death recorded then, along with other infections – scarlet fever, typhoid, and oddly, parasites. Some of the infections of course were post-surgical; surgeons didn’t even wash their hands before surgery until the middle of the nineteenth century. Also during that century, laudanum, ie tincture of opium, was widely prescribed for everything from headaches, to hysteria, to insomnia, and by the end of the 1800s there was a full-blown opium epidemic, not dissimilar actually, to the current one.

So, leaping ahead, by about a century ago we could reasonably expect to live past fifty-five, though reaching seventy-five was pretty rare. Most of us still died at home and undiagnosed, and hospice palliative care as we know it was completely unknown. Now we expect to live past seventy-five, and we mostly don’t die at home for a whole heap of good reasons.

Fast forward again; Dame Cicely Saunders, who was probably my favourite tutor at Barts, is credited with kicking off a major change in the care of the dying. She was born in 1918 to a relatively wealthy family, and she was very tall; she was about six foot, so she’s shy and clumsy, and she had a congenital curvature of her spine which caused her problems throughout her life. She had a very social mother who wasn’t sure what to do with children, so they were mostly brought up by the servants. And she went away to train as a nurse; and as a nursing student in the Second World War, that was her first exposure to pain and suffering, and I think it changed her forever.

By 1948 she was working at St Luke’s House; and when she got there she was completely appalled at the way death and dying were handled. She started to lobby for change, talking about special places [coughing] where better care could be provided. Nobody listened. So she retrained then as an almoner, which is sort of the forerunner of our social workers, and carried on talking. One of her first patients in this new role was a Polish emigré – he was forty, David Tasma; and he was dying of cancer. They talked; he talked about dying and what it was like. They fell in love, and when he died he left her £500, which was a huge amount of money then, so that he could be a window in her home. A surgeon Cicely was working for, Patsy Barrett, said succinctly that “most of the problems of the dying” [cough] “can be attributed to the attitudes of the medical profession. And”, she followed up with, “no one will listen to you; one, because you’re a woman, and two, you’re not a doctor.” So, at the age of fifty-three in 1951, she began retraining again; this time as a doctor, and by 1963 she’d completed her training. She managed to get a scholarship and toured the US, [United States] invited by Florence Wilde who was doing very much the same thing, possibly less successfully, over there.

I met her … I wasn’t going to tell you this, but actually it was quite soon after that … in 1965; her tutorials were on Wednesday afternoons. I was at Barts; there were eight women in our year, of a hundred and forty, and Cicely’s tutorials clashed with footy practice. [Chuckles] So we were a small and very spoiled group, and we loved her. She was inspiring for us; and for her, as for us years later on, here, establishing hospice was an absolutely profound rebellion. And in 1967 after endless lobbying of the NHS [National Health Service (United Kingdom)] – I think they actually gave in to her just to get her to go away – she opened St Christopher’s. Two years later, Elisabeth Khübler-Ross in the States, published ‘On Death & Dying’; and she always regretted publishing “that bloody book”, she called it, [chuckles] because everybody thought you started at Stage 1, scampered through to Stage 5, and then you were done. [Chuckles]

In 1975, a bit later on, Balfour Mount who was a Canadian, started talking about palliative care as well as hospice care, shifting the idea that care could be perhaps pushed into place earlier, rather than just when people were dying. Now I met Bal at a conference in Chicago, and in contrast to the usually extremely dry medical presentations of mainstream medicine, he started his Powerpoint with a picture of an exquisite red rose. He told stories and talked about love, compassion, and caring; and we all fell in love with him. He was absolutely gorgeous, and he was also funny. We were all keen at that stage to emphasise our rebellion against the prevailing medical attitudes, and one way of doing this was having hospice cats and [cough] hospice dogs, and allowing families to bring pets in for the in-patients. At that time Bal’s hospice was on the seventh floor of quite a big building, and it was far from ideal. One day as he was flying out of the lift, late as usual for a talk, he was collared by a family who said, “Dr Mount! Dr Mount – please, is it okay if we bring in Dad’s pet, Joey?” “Yes of course, of course, of course”, he said. Rushed on; [chuckle] forgot all about it until the following morning when he was met at the doors of the lift by a Sister with a face like thunder. Joey, it turns out, was a somewhat incontinent donkey. [Laughter] Priceless! [Chuckles]

So, here in New Zealand in 1979, Mary Potter in Wellington, Te Omanga in the Hutt, [Valley] and St Joseph’s in Auckland opened, and in 1982, Cranford, under the auspices of PSEC, [Presbyterian Support East Coast] the first small rural hospice programme in New Zealand. So there we were … August 1982; [background siren] Heather Sanders, our pharmacist; Joy Durney, our principal nurse; a group of amazing nurses, and a whole heap of incredible volunteers; and Pip, and me. I was thinking about it as I was trying to pull this stuff together for this talk, and I really, truly wonder … if we had known then what we subsequently learned over time … I wonder if we would’ve had the guts to start. Luckily we truly had no idea; and we were young and determined and optimistic; and I think deep down we knew we could make a difference.

So I thought I’d just look at some of the obstacles in this obstacle course, because they’re all part of our history here; so in no particular order:

Money – basically because we didn’t have any. Jack Mackie of PSEC had been encouraged to start the Cranford programme by one of his daughters who was a nurse. And she came back from the UK where palliative care experience, and bullied her father into this move. I mean, daughters clearly have a lot of clout, [chuckles] and are very persuasive.

Now hospices were, and in many ways they still are, often closely associated with churches and charities – in this case the Presbyterian Church – otherwise I think the story would look very different. One huge upside was, and still is, the enormous community support that happened for us. One huge early downside was the expectation that because we were a charity, we didn’t need to be paid. And so it was for quite some time. Our teeny weeny tiny budget covered the pay for Joy and the nurses, but not for the rest of us; and I never told Oliver how long it was before I got paid. [Chuckles]

Fundraising was a big issue. We all fund-raised – the nurses, the volunteers, me, the dog … It took a lot of energy that we would have preferred to spend on our patients. And we all used to commiserate with each other at meetings – which were very infrequent because we didn’t have any money to get there – about our terminal fundraising fatigue. And it took years; years and years of lobbying successive Ministers of Health to get funding. And it may interest you to know that most hospices are still only part-funded, and most of them still have to fund-raise to survive. For us here – we are so grateful to John Buck and the wine auction; it was a deal-breaker for us, and it’s the twenty-eighth anniversary this year.

The other problem was ignorance; and this was a huge hurdle, ‘specially with the medical profession, who were at that time largely unaware of hospice and what it meant; and furiously territorial about ‘their’ patients. They were also convinced that they could, and they were, doing everything necessary. Now the nurses … who of course spend much more time with the patients than the doctors … patients themselves, and their families, were much less convinced about this, and much more aware about what a hospice could offer. We decided to try and help ourselves introduce this rebel service to the medics, so we organised an Open Evening, inviting them all. Two doctors turned up [?]; one was a specialist at the hospital who will remain nameless; who swept in, was very polite, and then said, “I don’t know why you bother. They’re dying anyway.” [Audience murmurs] Another one was a GP [general practitioner] who swept in, gave us a lecture about stealing patients; predicted we would close within six months, and swept out again. We morosely picked at out over-catering. [Chuckles] Finally … late, another GP, who was interested, enthusiastic, and later became a regular part-time member of our team. So it was hard going at the beginning.

Territorial behaviour – which is a polite term for what we actually experienced, also surfaced from the usual places, and some unexpected places. Initially the Cancer Society were very dubious that we could add anything for any of the patients and families that they weren’t already doing. To their credit they worked it out much faster than the medics. I spoke at a Grand Round [medical meeting] a little while ago, with Craig, who I can see in the audience; and over a cup of coffee afterwards, one of the retired gynaecologists said, “You know, there are still surgeons who won’t refer to the Hospice.” Nearly choked on my coffee.

Late referrals – we had an awful problem with late referrals. Some of them were heart-breakingly late – patients arriving close to death; frightened, in pain; family exhausted, and furious after fighting for a referral. One of the surgeons who will also remain nameless, followed me after a Grand Round and said pointedly, “I wonder why it is so many of your patients die so soon after they get to Hospice?” [Chuckles and murmuring] He picked the wrong day and the wrong girl! [Chuckles] Flipping furious! And, thank you, I was able to point out that the last patient he had reluctantly referred, died on his way to us, in the ambulance. Yes; I mean that’s how bad it was.

Now Notes – would you believe it? We had issues over accessing patients’ Notes. George Forster, who was the medical superintendent when we first began, was really supportive. He didn’t mind about patients turning up to us clutching their Notes, but he was not at all optimistic about our chances [of] changing the entrenched ‘attitudes’, as he put it. We always returned the Notes very quickly; copied the bits we wanted, and let them go. Anyway, after he retired the mood changed, and for a while the hospital refused to send any Notes at all; making all sorts of excuses, complicating what was already a very difficult situation for all of us. Eventually we invited Allan Parry Jones to come and have a cup of coffee and a tour of the Hospice, which he did. Then he decided we were (quote) ‘a force for good’ (unquote), and thank heavens, we once more had access to Notes.

Fear-based concerns; these surfaced early, ‘specially about the use of morphine. I’m not going to spend much time on that; we can talk about it later. But interestingly, now we’re in the middle of another opioid epidemic due to all sorts of reasons … much worse in the USA, and certainly not to do with hospice palliative care. The Catholic Church in particular took a lot of convincing that we’re not in the business of bumping people in [off]. When they realised that people often lived longer and better with hospice care, the concerns were replaced with support; but we all [coughing] spent hours and hours talking to groups of various sorts, trying to explain what we really were doing.

We had some concerns of our own. We rapidly realised as the patients … the numbers went up and the complexity went up, we realised that … like all our colleagues everywhere all over the developed world … we realised we couldn’t fix everything for everyone, all of the time. For some unfortunate people it was completely impossible to keep them symptom-free and awake, while they died. And for those – it was a very small number, but for those people and their families, sedation at that point was such a blessing. But we wondered about the ethics of what we were doing, so we persuaded this wonderful principal nurse from the Sloan-Kettering, Nessa Coyle, to come all the way over to New Zealand to talk to the very small number of us who were trying to get hospices off the ground. And she’s very tall, very gorgeous, very elegant, with flat feet; and she used to bike round New York. And she was very clear; she was wonderful for us. She said, “No – if your intention is to relieve suffering, then using sedation while a dying person dies, isn’t killing them.” And it seems sort of a funny point, but it’s incredibly important for us.

And the last of the big obstacles that I thought I’d talk about was technology; or the complete lack of it. We had a landline. No fax, no bleep, [pager] no email, no mobiles, no syringe drivers; we didn’t even have at that time, slow-release morphine, so we had to give morphine four-hourly and by mouth, or by an injection. Now all of this made life a bit tough for me, because for a while I was the only medic, so I was always in, or on call. Oliver [Dr Oliver Smales] and I had three primary school-aged kids, and we only had one car. Not only was Oliver always at the hospital – he always had the car with him. [Chuckles] Luckily I had a bike; biking to work and home visits kept me fit. Going anywhere other than home meant leaving phone numbers; and the bleep when it turned up was complete liberation. I couldn’t ring in with it, so if my bleep went off when I was out, what I had to do was to find a friendly house and ask to borrow the phone. [Chuckles] I met so many lovely people, answering my bleep.

The arrival of MST, slow-release morphine, the syringe driver, the fax, the mobile and email, transformed all our lives sequentially – and it makes me feel so old talking about it, because we take it all for granted now.

So in the two decades I worked at Cranford, we were busy. We quickly acquired this really significant workload; we added extra beds; we established and expanded our outreach capability so that dying people could be looked after wherever they were. And we continued to struggle with all of these things.

I wanted to do [say] a particular thank you to the nurses and the volunteers, particularly pharmacists; because much of the complex symptom control of dying patients with multi-symptom disease [phone ringing] is based on skilled polypharmacy. And we were very lucky to have Heather and Anne, who were an incredible resource for us in-house, but also for the GPs and the families, and the patients in the community. By 1986 we had a handful of hospices … less than a dozen then; I think there’re about thirty-seven now. And we got together, and Hospice New Zealand was created. Initially I was a member, and then subsequently president; and the vital issues of course were funding and education.

By 1995 we established the Asia Pacific Hospice Network, and our first meeting was at Peace House Hospice outside Tokyo, with stunning views of Mt Fuji. And it was considered very, very auspicious, because every day she revealed herself, looking beautiful, whereas often she’s quite grumpy and shrouded in cloud. The meeting was hosted by Doctor Shigeaki Hinohara, who was absolutely adorable. He was pleased to be retired; he had been the cardiologist to the previous Emperor, and he promised to teach me how to bow properly if I taught him how to hug. [Chuckles] I was made honorary treasurer, which was the biggest joke in the family ‘cause I’m hopeless with money; and travelled a lot round Asia teaching and working with like-minded people struggling just as we had to set up hospice services. The mission statement that we created for Hospice New Zealand has been widely borrowed and adapted, and so have the famous yellow cards that we created at Cranford as drug cards for use in-house and for people to take home. And I met visionaries from all round the world with much bigger dreams than we did; and one of my favourites is the skinniest little Indian guy called Professor Raj Bhopal. He used to only come in here in the summer because that was the coldest he could cope with. He used to borrow all our merinos and still look skinny. [Chuckles] This man had a dream of a pain-free India. [Audience murmuring] He’s absolutely gorgeous. Of course we learned about Mother Teresa and countless, nameless others.

In 2000 I caught up with the team working in Vietnam; they still had glass syringes and needles that they had to hand-sharpen themselves. [Murmurs] In the Philippines there’s still a struggle to get legal opiates, even though there’s such a huge illegal market. One time when I was going over there to work, the Douglas [Pharmaceuticals] rep [representative] very kindly paying for my air fare ‘cause none of us had any money, pointed out that in a previous year I prescribed more morphine than had been legally prescribed in the whole of the Philippines. It’s a problem.

In New Zealand we’re still luckier than many. One of my colleagues, Odette Spruyt, published a research paper in 2017-18, and she stresses in that paper – I’ve got a copy if anybody’s interested – that globally hospice palliative care is still incredibly under-funded and under-developed. She estimated that forty-five per cent of the 56.2 million who died in 2015 would’ve benefitted from hospice palliative care; these are vast numbers globally. And eighty per cent who did die with significant health-related suffering were from developing countries. So however much we grumble here, we’re bloody lucky. In seventy-five out of two hundred and thirty-four countries surveyed, there’s no hospice palliative care at all. And things aren’t moving very fast – as long ago as 2014, I think, the World Health Organisation Council voted to increase hospice palliative care. But in spite of what’s really a global crisis of unmet need, it was not incorporated into the 2017 UN [United Nations] Sustainable Development Goals.

Global distribution of opioids remains highly inequitable, with fifteen per cent of the world’s population mopping up ninety-five per cent of their use, world-wide. It’s shattering.

So … and I’m winding up now; just to change focus a little bit … in New Zealand we have different problems. Not only do we have an aging population; there is a national and an international shortage of hospice palliative care-trained staff at all levels, and a lot of countries can pay a lot more than we do. We also live in an era of specialisation. There are many more possible interventions; and a growing awareness that not infrequently, these interventions may be futile or even harmful for the dying. [Cough] Dying people often tell us that they’re much more worried about what they might have to go through before they die, than dying. Pain used to be the most feared symptom; now it’s hopelessness, helplessness, unbearable suffering; which may be a bit of a back-handed compliment [coughing] to hospices for doing something about the pain.

So to give you some figures – most of us would like to die peacefully in our beds. We don’t. Already, more of us die in rest homes than anywhere else. Now this is important, and I’ll tell you why in a minute. About a third of us die under hospice care. Thirty-three thousand die every year, and by 2068 this is predicted to be about fifty-eight thousand. We can’t cope, now. So of the third of us who die under hospice care, ie about eleven thousand, twenty-four per cent only are in-patients; twenty-six per cent of that group are in rest home[s]; thirty-four per cent at home, and thirteen per cent in hospital. And of the one-third of us who access hospice palliative care, most of us have cancer, which has been cynically labelled as a ‘hospice ticket’; but for good reason, because if you look at the rest of the population, only five per cent of us with non-malignant diagnoses … heart disease, lung disease, or a degenerative neurological disorder … only five per cent of that group manage to access hospice palliative care.

So we have a major issue of rest homes becoming hospices by default; and just to give you some idea about patient/staff ratios – because they’re relevant, and so is the level of training – if you’re in a hospice, the staff/patient ratio is about one to three. If you’re in a hospital it’s about one to six, maybe better or worse. If you’re in aged care, it’s about one to thirty. [Murmuring] Rest home carers do an amazing job; they’re poorly trained, poorly paid, poorly supported, and overworked. And at night, when many deaths occur and lots of symptoms are worse, there may well be no registered nurse in-house. There will be an on-call GP who probably doesn’t know the patient, so issues such as escalating pain, or breathlessness or vomiting, often wait ‘til morning.

Since I left Cranford, I’ve continued to work in a non-clinical counselling role, particularly with grief and with trauma; sometimes with the families of someone whose death was horrible, or families coping with the real and the psychological mess when someone commits suicide to end or avoid unbearable suffering. And I got some stats from the Coroner’s Office, because I wanted to know how many people this is, and the current figures are that it’s probably more than fifty rational dying people each year, end their lives early to end or avoid unbearable suffering.

Sometimes I work with people who are dying, who are fretting about their own deaths. And it dawned on me quite quickly after I left Cranford that I have been so privileged to work in a sort of therapeutic bubble. I learned that the peaceful, well-managed deaths that I was used to, are not the norm. I felt besieged by people not only telling me awful stories about the real world, but asking me when the blankety-blank was I going to do something about it. So I’ve been doing my own research after them asking, [inaudible] and what I’ve found has convinced me, like seventy-four per cent of New Zealanders, that the time has come for New Zealand to follow the example of many more enlightened jurisdictions and change our legislation to allow rational dying people to access help to end their suffering by ending their lives. Now that might seem odd coming from a palliative care physician; and I am passionate about the value of hospice palliative care. But I’m also a realist; and research from Wollongong in Australia, which came out just before the Victorians changed [cough] their legislation, reveals that even for patients receiving hospice palliative care, five to ten per cent of them still suffer unbearably as they die. And if you do the numbers, it’s awful.

So – I am very grateful to you for inviting me to talk this evening. It’s forced me into some serious introspection; it’s made me feel incredibly ancient; it’s rekindled some truly lovely memories. From here I can see more clearly how many obstacles there were to overcome, and how we overcame them, or not. And I am of course intensely curious about how things will go from here. Thank you.

[Applause]

Joyce: Libby, that’s fantastic …

Question: I’d like to know a bit about Pippy …

Libby: I’m not sure whether I should answer that – she was the loveliest dog, and there’re a lot of Pip stories. She seemed to know who needed her, and would go there. And I would talk to her on the way to work – often we walked to work – and I’d say, “Right, Pippy, who do I need to see first today?” And I’d get to the hospice and she’d run in ahead of me to say ‘hello’; and then when I looked up she was sitting outside the room I needed to go to. It wasn’t just me thinking this; Lizzie [colleague] will say the same thing.

And it was funny – we still have quite a large rural population at Cranford, and some of the farmers’ wives were absolutely appalled that we would have a dog that came inside. [Chuckles] One particular woman who I actually loved, but when she arrived she was anxious, so she fitted firmly into the grumpy old bag category. [Chuckles] And she came through the door and she said, “I hear your dog is here.” And at that point Pip reappeared from the kitchen where she’d been helping prepare something … [Chuckles] I said, “Look, it’s okay – I can understand that you don’t like dogs inside, but Pip will never come into your room unless you invite her.”  Anyway, [chuckles] I then got busy and I lost Pip; but she shook it off. Anyway, one of the nurses went like this [inclines head] and I went down the corridor and there was the grumpy old bag tucked up in bed with my dog, on the bed! [Laughter] Now Pip was never allowed on the beds, and she saw me and she did that Labrador grin, like … [chuckles] and the wagging tail woke up the inmate of [the] bed. And I said, “What the hell’s going on here? I thought you didn’t like dogs indoors.” She said, “This is not a dog, it’s a nurse aide.” [Laughter]

Comment: Well I have to say that she was a very discerning dog, because we were very fortunate in having [coughing] scones or pikelets for morning tea, and Pip would look at you with her gorgeous eyes, [chuckles] and the people that weren’t in the know would give her a piece of scone or pikelet with no butter on it. It was not acceptable, [chuckles] and she’d just kindly drop it on the floor [chuckles] and move round to someone who knew better. [Chuckles] And her Christmas presents – we used to buy the biggest bone that we could get, and we’d wrap it all up in Christmas paper of course, and big bows, for her. And she wasn’t a little dog; it would be hangin’ out [chuckles] … but she couldn’t get outside quick enough to unwrap it and go and bury it. [Chuckles] She had to dig the biggest hole for it.

Libby: One terrible day she came home dragging a big polythene bag full of chops. [Chuckle] And we did ask round the neighbours, but I never found who … [laughter] I’m very sorry if it [laughter, inaudible] … See, she really was special, and she did make a difference. One day I came back to the hospice, and I’d left her behind ‘cause I had to go to the hospital to see somebody. And I came up the drive and she was sitting on the steps with the granddaughter of one of our patients, who had an ice-cream; and it was one lick for me, and one lick for … [Laughter]

So the other thing was that we did have concerns about the Council and being approved, and Occupational Safety and Health. We had this lovely guy who came round to check us every now and then, and I said, “I hope you’re not going to be bothered about Pip, because I know … you know, dogs in places like this [?] a bit of a bother.” And he looked at the ceiling and said, “What dog? I don’t see …” [Chuckles] So there were a lot of Pip stories.

Joyce: Thanks for that, it set off quite a story.

Libby, last year I sat with my sister while she died. And it was a small provincial hospital but those nurses put her in a hospice room, and they did everything we would’ve wished. And when you mentioned no one has to suffer, she was … no doubt she was dying, and we just had to ring the bell and they’d be in. And the portals were in her shoulders, and she was relieved almost every ten minutes. And boy, did it help. And thank you for saying that, because no one questioned it. You could never’ve said it helped her die; it just helped her die well. So those nurses, I felt, had been trained well, and that was in a small provincial hospital. So it was lovely. Anyway, there must be questions?

Question: You spoke a bit about education, and years ago I had a young Island boy, and he was early fifties I suppose, and his wife was younger. She died of cancer, and one of the things that upset him at first was that he didn’t know what hospice was when his wife was put in. He thought it was for a couple of weeks. But in the end what he did appreciate was, he was allowed to sleep on the floor. But education to people … like, he was shocked when he first found out that his wife wasn’t coming home. And I think education with – why they’re going in would’ve helped him a lot.

Libby: I’m sure. It’s funny actually; I was thinking while I was putting this together, of people that stay with us. And one was a tall, skinny accountant who Lizzie will remember, called Dennis. And he doesn’t mind us calling him Dennis, ‘cause he became part of our hospice family. And he staggered into the hospice late one afternoon looking ghastly; saying, “Kill me.” And we pointed out that actually, that wasn’t legal, [chuckles] and we had no intention of killing him. And I said, “Look, how ‘bout we just keep you here tonight?” He hadn’t got a referral at this point, we still had to chase up his GP; he’d had three years of unremitting pain; he had many secondaries from a carcinoma of the prostate, and every move hurt him. So I said, “How about we do the basics over tonight, and we’ll see how you go, and we’ll talk a bit more in the morning.” ‘Cause he was too tired to do much, and he didn’t actually need terribly much; anyway, we did all the basic things that we would always have done. And I came in early the next morning ‘cause there was … something needed happening, so I was there about half past six. And here was Dennis racing up and down the corridor, saying, “Right – can I go home now?” [Chuckles] I said, “What about this? Yesterday you were telling me to kill you, and now you want to go home?  What is it?” And it illustrated I think, for all of us, how those three years of horrible experience for him, were totally unnecessary. And he literally was fixed, overnight, with the simplest of interventions. And then if you do something a lot, with a bit of luck you get better at it.

And one of the things that I think is different from the mainstream system, is we have the most incredible team. It was flat. We didn’t have a management hierarchy, and we all covered for each other; and we reviewed things. One of the things that Cecily always said was, “Review, and review, and review”, because people who are dying often do have a very complex situation and things can change really, really quickly. And sometimes it’s a bit like dominoes – one thing goes, and then everything goes pop, pop, pop, and you’re really chasing your tail. I think we were able to do that then; and I think maybe it’s harder now.

Lizzie: It was my privilege to work in the early days with Libby, and when she means the team, she means the team. And because not one of us could have worked – I don’t like that word, ‘worked’ – but we couldn’t have done what we did without listening. And I think that is the biggest thing that we all learnt … to listen; and not only listen with our ears, but listen with our eyes, sometimes nose. And when I left I took away the feeling that not everyone can say they have practised their profession to the degree that Cranford allowed them to do it. Libby was wonderful with her knowledge; she taught me a lot; she taught every one of us. But I guess in return …

Libby: You taught me too … [Chuckles]

Lizzie: I guess in return that we all acknowledged that, and we here in Hastings are very lucky to have such a facility, because I believe every one of Libby’s figures that she now has are true. But Libby, what are they for here?

Libby: I don’t know currently, and it’s probably a topic for another evening to actually find out. I don’t know; the Hospice now is very different from the way it was then, and you know, time goes on and things change.

And I want to pick up something that Lizzie said about the way we listened. We did listen with our eyes and our noses; we also listened with our hearts and with our guts. And people when they’re dying, will check you out to see if you’re safe, and people will often talk in metaphor about things that are too difficult to address [sneeze] directly. Sometimes it’s really beautiful; one evening I was just about to go home and the nurses caught me, and they said, “Will you please go and talk to Mrs So-and-so; she’s frightened, and she’s giving us hell.” So I thought, ‘Great! I was hoping to get home and have a stiff gin, but never mind.’ So in I went; I poked my nose round the door and she glared at me. So I said, “Can I come in for a minute?” And I reached out and I took her hand; and she squeezed my hand and we sat there for a bit, and we looked out of the window; and the sprinklers were on in the garden. It was autumn, and the raindrops were making rainbows, and every now and then they would hit a vulnerable leaf and it would fall off. So we sat there for a bit, and I thought, ‘I think I’m just going to stay in this space’, because we were both … getting it. And eventually she said, “Goodnight, dear”, [audience murmurs] and so I went.  But the joke was that the staff told me the next day, that … “What did you say to her? She’s completely different.” I said, “Well, what do you mean?” And some of them had actually asked her, “What’s happened to you? You’re not grumpy any more.” She said, “Oh, I had a good chat with the doctor.” [Laughter] Yeah. It was lovely; and the humour was sometimes very black.

We had a very young guy who was dying; he didn’t want to die of course, but he was, and he knew it. And he was pissed off with waiting for it. And it was one of those days … it must’ve been autumn again … and we had these big blowsy blowflies, and so there were nurses sprinting around with fly swats, because we didn’t like spraying stuff. Eventually we got so brassed off with this particular fly ‘cause none of us could catch it, that somebody went to get the fly spray. And Presbyterian Support had bought a batch of budget fly spray in white tins, which said, ‘Quick Kill’. [Laughter] So you can guess what happened … “Here!” “Here!” [Laughter] And I mean it sounds awful out of context, but sometimes we really needed that. [Murmuring]

Joyce: Libby, where’s legislation going in your view?

Libby: Well, I hoped you’d ask me that, ‘cause I just bought the latest Horizon poll. And I’ll tell you what it says, ‘cause I’m hopeless at remembering numbers. This poll was taken last month after the Justice Select Committee reported on a record of thirty-nine thousand submissions to the Bill. And the poll found that ‘seventy-four per cent of respondents believe that mentally competent New Zealanders aged eighteen or over with end stage terminal diseases like cancer, should be able to get medical assistance to end their lives’. This is really interesting – they asked four questions on this poll – ‘sixty-five per cent of voters believe that it should also be available for people with irreversible unbearable suffering which may not cause death in the immediate future’. That’s like … motor neurone disease or Huntingdon’s disease. In both cases just nineteen per cent of New Zealanders were against the [??]. So it’s gone up since July 2012, when sixty-three per cent supported a law change.

Now I happen to know we’ve got Craig in the audience; have we got time for you to give us just a little bit of a lived experience? Happy to do that? He’s used to sermons – he’ll be fine. [Chuckles]

Craig: What would you like me to sort of ..?

Libby: Just give your impressions about …

Craig: The Bill?

Libby: No, the death.

Craig: Oh – assisted death. Yeah, well just to really say that I had an experience with our family where a nephew, forty-seven years of age, in Canada, was suffering from a real fight with cancer; an aggressive melanoma on the face that had numerous surgeries, chemotherapy, radiation that left his face twisted; affected his hearing and swallowing. He was on medical marijuana. And the family, my brother and sister-in-law, went across to Canada.  And because they have the law there that you can die with dignity, he decided that he would have no further treatment and that he would end his life on 18th September. And so he went out, tidied his garage, burnt some rubbish; and in the presence of his wife and two young daughters, his life ended.

All the family … I talked with them extensively … all of them said it was humane, compassionate, and right, and they were firmly of the opinion – unanimously actually – that this needs to come here for New Zealand. And I have known, and a few of you have known, people that would’ve benefitted from this more if it was there. So that’s all I really wanted to say; I think for our family it’s no longer a theoretical debate, or a philosophical debate, or a theological debate – if it ever was.  It’s a reality, and it was right.

Question: Do you know what will happen now that the survey’s been done and we know what the stats are? What is the status of the bill at the moment?

Libby: Well the Bill’s next reading is next week, on the 22nd; on the 21st I’m going down to Wellington to support David Seymour as part of the panel which includes one of the lawyers who was part of Lucretia Seales’ case – me, and I think an ethicist – to talk to the MPs [Members of Parliament] to explain to them another point of view from the point of view that Maggie Barry and Bill English are currently pushing. Because quite a large number of MPs have already come out and said, “Yep – we understand what this Bill is about, and we’re happy.” There are quite a few who are absolutely never going to think it’s a good idea under any circumstances at all, so it’s the floating voters in the middle that we want to talk to. There will be a vote to see whether it goes ahead.

Joyce: But it will be a conscience vote, won’t it?

Libby: In theory. Yeah. So if you wouldn’t mind lobbying Lawrence Yule, who’s currently sitting on the fence, it would be good.

Question: So after this Select Committee, do they decide whether it will go back into the House or not?

Libby: Well, whether it goes to it’s next stage.  What that is … I’m not very up on parliamentary process. I think the thing that I find distressing, quite apart from the suicides, which I think is absolutely a [an] awful statistic; and there’s a chap called John Weaver who spent ten years studying a century of suicides in New Zealand, because it’s such a horrible problem in every way. And he found that every year for the last century people have killed themselves to end or avoid unbearable suffering. And he was so moved by the stories of pain, and loneliness, and the violence, that he completely changed his position about law change. It’s interesting the sort of journey that we all have today, of … and I’m coping with being ostracised by my peers, because I don’t believe – and the data doesn’t support – a lot of hospice people’s assertion that they can and do fix everything. It’s not actually true.

But for people who are anti this Bill, nothing needs to change for them. They don’t have to face it. But for those … people say, “Well it’s only a few people and it doesn’t matter.” Well it does matter. It does matter.

Question: Could you explain to me what the current procedure is? We all know our GPs very well, and most of us have lovely relationships, but if they refer us to the hospital, who’s in charge? Who says, “I want to refer this patient to the hospice” – is it the people in the hospital?

Libby: Well, it’s a really good question. Many of the hospital specialists and their junior staff are very hospice palliative care-savvy, now. And while you’re in the hospital, you belong to the Consultant you were admitted under. The patients and families do have a voice, and they use it; and if there’s any issues, often their GP can help out.

But I’d like to take your question a step further, because Balfour Mount started to talk about palliative care as well as hospice care in 1975. In the [coughing] late eighties onwards, we were talking about supportive care, which is applying palliative care principles to anybody who’s got a lousy diagnosis. And there is a lot of data to suggest that if you do that, then their trajectory from wherever they are now to whenever they die, can be much modified … much gentler, much kinder, more realistic, fewer futile interventions. We have so many things that we could change already, and we don’t.

Question: There’s been talk about having your plan for how you’re dying; and I sorted all mine out a few years ago, and it was to go to bed with a bottle of mogadon and a bottle of whisky. [Chuckles] And I was telling my son about this, and he said, “Mum – by the time you get there your memory will be so bad you’ll have forgotten where you keep the whisky, [chuckles] and your arthritis is so bad you can’t take the mogadon out of the …” [Laughter] So … yeah.

Libby: I know; it’s a worry. Having advance directives … I actually think we all do need to write an advance directive, and possibly not for the reasons you think. But from a doctor’s point of view it is hugely helpful if I see somebody that I really don’t know, to have some bit of paper that tells me what they want; what they think. ‘Cause it influences a whole series of events [coughing] so that we can make whatever happens more thoughtful in terms of what they want.

My current husband … I mean, my mother said to me, “Whatever you do, dear, don’t marry a doctor or a lawyer.” [Chuckles] Current husband is a lawyer, and he says advance directives aren’t worth the paper they’re written on;  and that’s because they’re not legally binding. However, the DHB [District Health Board] here has a very good Records department, and if you do write an advance directive – which I strongly suggest you do, and get it signed and hand it in; and then review it in five years – you can hand it in to Medical Records and ask for a receipt; and it will be attached to your Notes. Now this is not going to get anybody probably, to do what you want; but it is a means of communication, which is always better than none.

Question: If we have a situation where we can say, “Well I’d like to die at ten o’clock”, as Craig’s nephew did; in that case they were in a situation where they could make that decision and act on it. But who do you see administering that final dose of whatever you’re going to administer? Is it going to be a doctor? Or a health professional? Or a family member? I don’t know …

Libby: Well, it’s interesting if you look at other jurisdictions. Oregon, whose demographics are quite like ours … similar sort of population; [???] they’ve had their legislation for two decades now, and the only way you can access their legislation is, one, by getting a hospice referral, which I absolutely applaud because I want people to have the things that can be fixed, fixed. And the other is by actually taking the medication yourself. And the Death with Dignity volunteers will pick it up and bring it to your home for you, and wind up the tablets, but you have to actually take it yourself. So that’s that issue.

We feel that that’s discriminatory, because some people literally will not be able to swallow the stuff; and it’s bitter. So ‘medical aid in dying’ is the term for doctors doing this. And interestingly, I belong to an Australasian group of doctors, and there are not enough people who are compassionate enough to perform this service already; and we know that there are a lot of medics who are much more ‘pro’ than the NZMA [New Zealand Medical Association] statements would lead you to believe, but they’re terrified of getting into problems or losing their jobs and so on. [Audience murmurs]

So what our legislation will look like finally, I’m not sure. I hope it’ll be like the Canadian legislation and the Victorian legislation, which is very stringent; very careful; very thorough, and for a small number – vital number – of people.  But for most people most of the time, good hospice palliative care is fine. But not always.

Question: You’re shifting location?

Libby: The Hospice is, yes. Yes – the Hospice hopefully, will move to Chesterhope – glory knows when; it’s moving with the speed of an animated snail at the moment. [Chuckles] But I think it will happen – the current site is too small, and the organisational things have happened. PSEC are now no longer involved, there’s a separate Hospice Trust. The land belongs to Joan Fernie as part of the Joan Fernie Trust, which was set up to benefit the people of Hawke’s Bay, so using that land to put a really beautiful custom-built hospice, is entirely in line with what she would’ve considered. It’s beautiful, the site, and hopefully everybody’ll get to look at it; and it’s halfway in between Napier and Hastings, and [chuckles] all that stuff.

Joyce: Libby, it’s just been fantastic. I just wanted to add, too, you mentioned the Sloan-Kettering nurse who was very influential; and [of] course it’s a New Zealander, Professor Murray Brennan, who has been head of Sloan-Kettering; he’s in an honorary position there now. But he’s a fantastic guy and was a world authority on pancreatic cancer, and he still has very strong ties with New Zealand. Libby, it’s been fantastic; it’s really a great subject tonight. Libby, it’s been quite reassuring. I mean all of us know we’re going to have to face this – some worse [more] than others. So could we have another round of applause …

[Applause]

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Landmarks Talk 14 May 2019

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