Going gently into that good night

Palliative care specialist Rod MacLeod says we need to adequately resource around the end of life...
Palliative care specialist Rod MacLeod says we need to adequately resource around the end of life. Photo: NZME
At some level, everyone wants to know. What's it like to die? Kim Knight asks palliative care specialist Rob MacLeod. 

Death is damp homes and fast cars. Ischemic and cerebrovascular and end-stage. All the words we can't and don't want to say. The furious flat line of a failed surgery; the slow decline of a failure to thrive.

"You can fight dying," says Rod MacLeod. "But you can't win."

The palliative care specialist remembers working in a British hospice when news came that the Princess of Wales was to visit. The 14 resident patients were all alive the day Diana arrived.

"Over the next 24 hours, seven of them died. People hang on for Christmas sometimes. When we had the Dalai Lama here in New Zealand, people hung on to meet him. And they actually hung on after they met him too."

The thing about death: "It has 100% success rate."

MacLeod sits on a squashy couch in an expensive Auckland suburb. He makes a Nespresso coffee and turns down the stereo. Fats Waller - the jazz pianist who contracted pneumonia and died on a train in 1943 - fades. Everybody dies. Hardly anybody wants to talk about it.

"Efforts to cope with our own impermanence are considered to be at the root of much human social behaviour," wrote MacLeod et al, in an academic paper that examined death anxiety among New Zealanders.

In 2012, MacLeod and his research colleagues found 69% of survey respondents felt anxious thinking about the death of someone they cared for and 60% were concerned about "letting go" when it was time to die. Single people (especially women) had the highest levels of anxiety and widowed people the lowest.

According to health experts, death anxiety is a known factor in depression, panic and eating disorders and separation anxiety. It has also been linked to low self-esteem. The only thing certain in life is death - so why do we worry about it so much?

"For most of us, the unknown is what is fearful," says MacLeod. "And for most of us, our experience of death and dying is what we see on television or film and that is never really portrayed in a kindly manner. The reality of what commonly happens helps to dispel that uncertainty and therefore helps to reduce anxiety."

According to Hospice New Zealand, dying is often more peaceful and gentle than we expect. The organisation has launched a national campaign (#weneedtotalkaboutdying) to help people "reclaim" familiarity with dying.

A key component is an animated video, co-written and narrated by MacLeod. It's called What is it Like to Die. It is why I have knocked on MacLeod's door. I want to talk about the nuts and bolts of last breaths and final goodbyes. The physiology of departure. The shrugging off of mortal coils.

Act Party leader David Seymour is promoting the End of Life Choice Bill. Photo: NZME
Act Party leader David Seymour is promoting the End of Life Choice Bill. Photo: NZME
OK, says MacLeod. But first, can we talk about "dying"?

"What's extraordinary is that the media - print, radio, television - still talk about people passing. Passing on, passing away. Why? They have died. `We lost so-and-so ...' Well, where do you think you lost them? That sort of language is not helpful. It's part of the death-denying society. We're living in a society that places more value on realism and death is a reality."

That reality, at a physical level, is a shutdown.

"Essentially what happens is your body begins to fail you. There will be biochemical changes that make, for example, the rhythm of your heart different. But your heart might fail, your kidneys might fail, your liver might fail, depending on the disease mechanism. You might get a build-up of toxins and, eventually, your heart and lungs can't cope with that."

MacLeod recommends the book How We Die, by Sherwin Nuland, for the detailed biochemical explanations. But it's a far slimmer book, with a far more pragmatic title, that he grabs from his kitchen table. My Advance Care Plan & Guide is a 14-page, New Zealand made, fill-in-the-blanks document for telling people about the kind of healthcare you want at the end of your life.

"You should have these conversations when you're well," says MacLeod. "It's almost as if people are frightened to talk about it, in case it happens. Well, hello. It's going to happen."

Spoiler alert: No-one really truly knows what it is like to die. But MacLeod has provided palliative care for more than 15,000 patients. He has some insight. And, he says, it begins with quieter days and a gradual withdrawal.

"What I try to explain to families is that when someone is dying, one of the things that happens is they're no longer interested in what's going on in the wider world. Like America, or Britain. They don't care about Brexit any more. And then, as time goes by, they care less about what's happening in New Zealand and then they care less about what's happening locally. Then they withdraw to their immediate family. And then the difficult thing for families, is that sometimes they withdraw from their family. They just don't want to engage very often."

Hearing, MacLeod confirms, is the last of the senses to go. He says when oxygen to the brain reduces and people become confused, a familiar voice can be reassuring.

There is less energy for eating and a reduced desire for food and drink. MacLeod says it can be distressing for families to hear what has become known as the "death rattle" but says this is simply a little bit of fluid in the airway of a person who is unable to clear their throat.

"I liken it to drawing up the last bit of a drink through a straw. People are worried the lungs are filling up and people are drowning. That doesn't happen."

A dying person may lapse in and out of consciousness. This too is normal. MacLeod says for the patient, "It will feel to them like they have had a lovely, deep sleep."

Breathing moves from fast and shallow to slow and gentle and sometimes this pattern can repeat. Eventually it stops.

"And the heart will stop. And they will have died."

MacLeod narrates the simple, three-minute video with calm assurance. More than 30 years ago, when he was a rural GP in the United Kingdom, he cared for a couple called Roy and Milly. MacLeod says Roy told him: "It's really nice of you to come, Rod, but you don't have to change my pills every time. We could just chat."

So they chatted. "And I watched Milly caring for him and it was extraordinary."

Roy wanted to die at home. MacLeod was away for the weekend when another GP called an ambulance to take Roy to hospital. He died within 12 hours.

"And then I looked after Milly, who literally died of a broken heart. She developed heart disease and was dead within six months. There is a name for it. A Japanese name."

Takotsubo cardiomyopathy. Broken-heart syndrome. Described in 1990 by the physician Hikaru Sato and named for the octopus trap shape of the heart's left ventricle. It was the death of Roy and Milly that sent MacLeod down a palliative care path. He worked at a few hospices and then, on the eighth time his car was vandalised, made the decision to leave the United Kingdom.

"The last time, it was set on fire. I can still picture me down by this flaming car and looking up at our house where my girls were and seeing these three little bewildered faces and thinking, `I don't want to bring my children up in this environment'. Anyway, we ended up in New Zealand."

He became, he says, "an accidental academic", holding titles at the universities of Sydney, Auckland and Otago. He recently finished working as a palliative care specialist at Harbour Hospice and still works for HammondCare in Australia. He has authored dozens of medical research papers - and two poetry anthologies on living and dying. He pulls one down from the bookshelf that covers an entire living-room wall.

"It is part of the cost of being human," he writes in the foreword to The Unknown Sea. "To lose and to grieve."

Poets tell us to not go gentle into that good night. That when someone dies, we may as well pack up the moon and dismantle the sun. Importantly, says MacLeod, they help people feel less alone.

"I used to really hate poetry. But when I was starting in palliative medicine, more than 30 years ago, it was just one way of trying to understand what people were feeling."

MacLeod finds metaphors in words and art. A painting by Callum Arnold that used to hang in his consulting room is in his living room now: "`You're going down this dark road and you can veer off into the darkness, or you can go towards the light.' The light was meant to represent me helping to alleviate their symptoms."

And then the interview veers. Because if death is certain, what happens next has been keeping humans awake since the world was primordial soup. Or created by god(s). Or populated by aliens. Or (insert applicable personal belief system here).

"I'd like to think that `regular doctoring' ought to care for the whole person. Physical, psychological, social, spiritual," says MacLeod. "But if you look at any health record in a hospital, you'd be hard-pressed to find out somebody's spiritual framework. That may be because you don't really think about about your spirituality until you're really challenged.

"When you're dying, it becomes much more significant. And when you're caring for somebody at the end of life, you have to know who they are in order to try to find out how they're going to respond. Everybody is fearful of pain and pain certainly has physical elements to it but it also has significant psychological, social and spiritual elements. We can't just rid everybody of pain by giving them a painkiller. You get a pain in your heart, or a pain in your soul."

About one minute into the What Is It Like to Die video, MacLeod proffers four conversation prompts: I forgive you. Please forgive me. Thank you. I love you.

"And saying those things to other people is important. The challenging thing is saying them to yourself. Nodding to yourself and saying you forgive yourself."

MacLeod says yes, he believes in God. But he is not sure he believes in hell. Or ghosts.

"Sometimes, people who are dying will move about. They'll pluck at the air. Or it will appear that they are seeing things, which they probably are.

"You know deathbed visions are very common. Being visited by people who have died is very common. The only way I can explain it, is it's some kind of spirit. If I was being a pure scientist, I'd say it was a hallucination."

He once supervised a PhD student who was studying dying children. The mother of a 4-year-old boy reported entering the room to see her son waving "at those people who came to see me". The child didn't know who they were, but said they had told him it was not time for him to go with them.

"Four years old," says MacLeod. "We had another PhD student who was looking at spirituality at Hospice. When we talked to patients, that visitation was very common. They're usually people we know and it's never distressing."

What happens when we die?

"I can't tell you."

Will we ever know?

"No," says MacLeod.

"People who have had those near-death experiences do describe a warm, positive feeling. Cynics will say that's all biochemical and all the bright lights and all that sort of stuff has been explained away. That doesn't help the general public, really. What helps me is knowing that people who have been there haven't been frightened."

Hospice New Zealand has urged politicians to vote against the End of Life Choice Bill that is approaching its second reading. MacLeod supports this, claiming assisted suicide legislation would be "catastrophic" for New Zealand society.

"We know, for example, that over the age of 65, one in 10 people have experienced some form of abuse and that rises with age. How are we going to be certain that somebody hasn't been coerced into saying, `This is what I want'?

"I've had a lot of people asking me to kill them. Most weeks, there would be somebody." He has never acceded. "Because within a day or two, they stop asking. Because they are supported, their symptoms are managed. A society shouldn't be considering abandoning somebody because it's too hard. I'm fortunate - I've spent 30 years looking after people who are dying and I've yet to see somebody who I thought, `I wish you were dead'. That doesn't mean to say it won't happen. But it hasn't happened yet.

"Look at all the countries around the world: people don't access assisted suicide because of pain. They access it because they are frightened of being a burden or they're frightened of losing dignity. But we can deal with that."

Euthanasia, says MacLeod, is "predominantly a white middle-class push".

"There's no push in India for euthanasia, no push in Thailand or Japan. They think we're mad. They look after the people who are most vulnerable.

"If we're serious about caring for New Zealanders then we need to make sure that everybody has access to palliative care. That every single rest-home has adequate staffing to care for people who are dying, that every hospital recognises when people are dying, and puts in more care - not less. Rather than saying `we can't deal with this, so we'll kill people', you look at the problem and solve the problem."

Another metaphor: "The patient is like the conductor of the orchestra. They must hold on to the baton for as long as they want to ... they may choose to give the baton to somebody else but I advise them not to give it to a doctor. Dying has become a medical event, whereas it should be a family event, a social event ... Give it back to another family member who you trust and take it back when you've had a rest, because you are the one making the music. Nobody else."


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