Working to provide a good death

Dr Claire Hepper & Jeremy McKnight.

Jeremy McKnight, whose daughter Shannon (19) passed away three months ago. A doctor from Creswick, Claire, worked tirelessly to help Shannon pass away at her home instead of at hospital by visiting them at their home in Mt Glasgow. They're now campaigning for extra palliative care services in outlying areas. Photo: Dylan Burns age news 10/6/2016 The Courier  photographer, Dylan Burns. Remembering Shannon: Creswick GP Claire Hepper and Mount Glasgow father Jeremy McKnight with a pack. Picture: Dylan Burns
Dr Claire Hepper & Jeremy McKnight. Jeremy McKnight, whose daughter Shannon (19) passed away three months ago. A doctor from Creswick, Claire, worked tirelessly to help Shannon pass away at her home instead of at hospital by visiting them at their home in Mt Glasgow. They're now campaigning for extra palliative care services in outlying areas. Photo: Dylan Burns age news 10/6/2016 The Courier photographer, Dylan Burns. Remembering Shannon: Creswick GP Claire Hepper and Mount Glasgow father Jeremy McKnight with a pack. Picture: Dylan Burns
The Age, news.Wayne and Lizzie Russell.  Wayne has terminal liver disease and is using palliative care. His wife Lizzie is his carer. For a feature on palliative care.Pic Simon Schluter. 21 September 2017.

The Age, news.Wayne and Lizzie Russell. Wayne has terminal liver disease and is using palliative care. His wife Lizzie is his carer. For a feature on palliative care.Pic Simon Schluter. 21 September 2017.

Jan Ogle, A nurse who lives in Mount Waverly. She supports the reforms as a daughter of a mother who died a slow painful death, as a nurse who has seen plenty of terrible deaths and the associated trauma, and as a 60 year old who wants choice for herself. Video Grab for Miki Perkins story about Palliative care THE AGE NEWS Supplied 20th September 2017

Jan Ogle, A nurse who lives in Mount Waverly. She supports the reforms as a daughter of a mother who died a slow painful death, as a nurse who has seen plenty of terrible deaths and the associated trauma, and as a 60 year old who wants choice for herself. Video Grab for Miki Perkins story about Palliative care THE AGE NEWS Supplied 20th September 2017

Wayne Russell, 59, craves the sun. So when it appears, he and wife Lizzie drive to the beach at Mornington. Lunch is fish and chips on the sand, waves at their feet, the cypress-covered bluff at their backs.

With its warmth on his skin Wayne can forget, for a moment, the cirrhosis that scars his liver and chills him to the core. The fluid that swells his abdomen to a taut balloon. The pressure triggers pain, so his wife administers morphine each day, the way the palliative care nurses showed her.

But forget all that. Sun on his cheeks, Wayne does not dwell on death. He's alive.

Are you scared of death? Many of us are. We shy away from our own mortality, crack nervous jokes. But what would a good death look like? Free from pain, perhaps. Unhurried. In a place of our choosing, those we love close by.

Good palliative care offers this, its practitioners say. It focuses on what matters most to terminal patients and encompasses the body, the mind and the heart. You might assume palliative care is about death. But actually, it's about life.

As Victoria debates whether assisted dying should be legal - and stories of traumatic deaths fill the media - many palliative professionals feel their vocation is under attack. Are palliative care and euthanasia antithetical, or can they coexist?

Modern palliative care began in the 1960s, with the growth of the hospice movement. Now it's available at home (if you have support), in aged care homes, hospices and inpatient palliative care units, and accessed with private health cover or Medicare.

Palliative care has evolved rapidly in the past two decades, but the term still carries a strong association with the old-fashioned hospice: a place a patient enters late and never leaves. There's even a push to call this enigmatic branch of medicine "supportive care", to rid it of stigma.

About 70 per cent of us would like to die at home, according to research from the Grattan Institute. But that's not usually what happens. Around 40,000 Victorians die each year; half of those in hospital, 35 per cent in aged care and 15 per cent at home.

And more than half of the palliative services in the state can't keep up with demand, according to Palliative Care Victoria. Too often people in regional areas, adults with conditions like dementia, Aboriginal Australians and those from culturally and linguistically diverse backgrounds miss out.

When Wayne and Lizzie Russell were first referred to palliative care, the Somerville residents thought it meant drugs on Wayne's deathbed. But when the caseworker suggested Wayne, 59, join the local men's shed, or go on holiday, their assumptions were overturned.

Lizzie had quit her supermarket job to take on the role of carer: "I was almost going crazy myself before we came on board - he wasn't sleeping and I had to take him to emergency all the time." She's been shown how to administer her husband's pain-relief syrup and other medications, and given the number for a 24-hour helpline.

Palliative nurses visit and call often, and they've encouraged Lizzie to take care of herself too. Each week a few hours are carved out for a solo coffee or swim. "It's so good to know I've got backup," she says, wiping away a tear.

Odette Waanders,??? the head of Palliative Care Victoria, is familiar with the public ignorance about palliative care. On the way to our interview the taxi driver asks her what she does for a job. Oh, he says, those machines. She realises he's referring to being kept alive on a respirator. "We get that a lot: you're the ones who hasten people's death."

Not so, says Waanders. Good palliative care maximises the quality of life for people who have a disease that can't be cured. It's most effective when undertaken early - months, sometimes years before death.

Drugs and medical interventions are used to manage physical pain. But palliative care also provides strategies including counselling, family support and art therapy to relieve existential distress.

Funding to Victorian palliative care grew by 8 per cent in the last financial year, to $135 million.

Palliative Care Victoria are not commenting publicly on the proposed euthanasia laws. But the body's submission to the inquiry is clear: "It is imperative we do not cross the ethical barrier and allow doctors to kill patients."

It says that there is a real danger that legalising euthanasia will lead to "a growing sense of a duty to die".

But sometimes palliative care is not enough, says Jan Ogle. Her mother Betty was an independent, active 85-year-old widow when she was suddenly diagnosed with pancreatic cancer. Her daughters, both nurses, cared for her at home with the support of a palliative care service.

Betty told the nurses she wanted a dignified death. They reassured her. But in her final weeks her abdominal pain became difficult to control and she stopped eating, says Jan. "She turned to the palliative carers and said 'I've had enough now, I'd like to go, can I have an injection?' They said, 'we can't do that'."

Jan Ogle with a photo of her mother Betty.

Jan Ogle with a photo of her mother Betty. Photo: Rachael Dexter

The palliative nurses increased her medication, but only in doses low enough to make her drowsy, not enough to rid her of pain, her daughter says.

On Betty's final night, no one from the palliative service was available until morning. So Jan endured the worst night of her life as she listened to her mum draw rattling breaths and administered morphine every four hours.

Voluntary assisted dying should be there if people want it, says Jan. "It's the relatives who are there for ... the pressure sores, the coldness, the bruising, the stiffness. The doctors get to walk away."

Palliative care and assisted dying can be complementary, says palliative care physician Dr Ian Maddocks, a member of the expert advisory panel which investigated Victoria's proposed legislation on assisted dying.

There were occasions over a long and distinguished career when his patients killed themselves in private, sometimes using drugs Maddocks had prescribed for pain. Now in his mid-80s, he still feels sadness at this, knowing they were isolated and miserable. "I would have been a far better palliative care physician if it could have all been in the open, so we could talk about what mattered to patients and their families."

While death in a palliative setting could be "lovely", says Maddocks, "there are occasional situations where it has seemed to me quite logical that someone should say I think I should die, and I would agree with that".

The atmosphere is tranquil inside a large, nondescript office building near Mornington's town centre. Peninsula Home Hospice provides palliative care to patients at home (including Wayne and Lizzie Russell), in local aged care homes and in hospital.

First up are practicalities. A host of equipment eases the burden at home: electric recliners, pressure cushions, shower stools, toilet frames, wheelchairs and emergency medications for pain. Palliative nurses review a patient's history and try to plan for possible drug interactions or side effects.

With corporeal needs met, the head and heart follow. With a counsellor, patients can talk. Fears, longing, grief. About the sibling who wants mum to get last-minute chemo, versus the sibling arguing for quality of life. How lonely it feels to be dying. Black humour. Some want to help to leave a legacy; letters for children or a song. Sometimes, rifts are healed.

Inge McGinn, the manager of clinical services, recalls a woman who would not talk to her husband about the illness because she wanted to protect him. After counselling, the wife finally felt able to express herself: "She told him that what she wanted most of all when she died was to be able to look into his eyes. She died 24 hours later, in the way she wanted."

Surprisingly, it's not unusual for a patient to be sent to a palliative service not knowing their illness is terminal. "Their doctor says 'We'll make a referral to the "nursing" service'. We go into the home and there might be that moment of clarity," says Nikki Jenkins, a clinical nurse consultant.

This comes down to a reluctance to talk about dying, says Dr Peter Poon, the director of McCulloch House palliative care, part of Monash Health. Junior doctors have told him it's difficult to have these conversations with patients and they need more training.

Patients and their families also cling to hope, bringing in sheafs of internet research, even going overseas for experimental treatments. "Sadly, we haven't heard yet of a story like that with a happy ending," Poon says.

The heightened public debate over assisted dying has taken a toll on palliative care workers. Staff at Eastern Palliative Care will have debrief sessions in coming weeks as they field questions from patients. Many are anxious that staff won't be able to help them, says chief executive Jeanette Moody: "It has been portrayed in the media as if there are people dying in absolute agony and it's just not the case."

There are times when a patient won't find relief in palliative care but they are very rare, says Moody. Some people choose not to have pain medication because of their concerns about unpleasant side effects, including nausea and confusion. These usually resolve after a couple of days but some people still decide against the drugs.

And the second is existential pain; for example, a young mother who is dying and leaving behind her children.

It was late to be driving fast along a dirt country road. But Dr Claire Hepper knew she was needed urgently at the home of her patient, 18-year-old Shannon McKnight.

Shannon, a Wagga High School student, had endured two years of treatment for lymphoblastic leukaemia at hospitals in Sydney and Melbourne.

When it became clear Shannon was near the end of her life, her parents Jeremy and Belinda brought her back to their hobby farm in the Central Goldfields.

Shannon McKnight and her dad Jeremy.

Shannon McKnight and her dad Jeremy. Photo: Supplied

Shannon's care was transferred to Hepper, and a palliative care appointment was booked in for the following week. But Shannon was running out of time.

On paper, every part of Victoria is covered by a palliative care service. But in practice, specialist nurses and palliative services are thin on the ground in regional areas.

The day after Shannon arrived home, the teenager had a bleed in her spine. Hepper made her late-night dash to show Shannon's parents how to administer pain relief medicine through a special device in her skin. But it wasn't enough. "I thought 'we can do better than this'," Hepper says.

So she and a colleague went to the chemist and made a "symptom-relief" pack for the teen. Inside were antiemetics for nausea, ampoules of pain relief, mouth care (palliative patients are often dogged by extreme mouth dryness), vomit bags and tissues.

Shannon McKnight, who died from cancer when she was 19, enjoys a rare day out.

Shannon McKnight, who died from cancer when she was 19, enjoys a trip to a cafe. Photo: Supplied

Having the pack on hand gave Shannon the confidence to venture to a local cafe for tea and cupcakes. She died a few days later.

In her memory, Hepper and a team of volunteers still make batches of "Shannon's packs" and post them to bush hospitals or country GPs all over Australia.

If the assisted dying legislation is passed, doctors will have the right to refuse to help terminally ill patients who wish to die. Hepper will become one of these "conscientious objectors". She believes that until there is universal access to palliative care, any debate on euthanasia is defunct.

Like some other palliative professionals The Age spoke with, Hepper is furious about a "horror" movie produced by Andrew Denton's right-to-die group Go Gentle, which depicts the agonising last days of a man dying from cancer. His terrible experience epitomises a lack of good palliative care, not the need for assisted dying, Hepper says.

Claire Hepper with Shannon's father, Jeremy McKnight, a portrait of Shannon and one of  Shannon's packs.

Claire Hepper with Shannon's father, Jeremy McKnight, a portrait of Shannon and one of "Shannon's packs". Photo: Dylan Burns/Ballarat Courier

"I've had people say 'You're not going to do that death thing Claire?'. I have enough trouble getting people to talk about the fact they will die, without them worrying I'm going to kill them."

But some worry that taking a strong public position against assisted dying will make patients feel they can't ask questions. These conversations are already happening, says one nurse who has had patients take their own lives: "If palliative care is portrayed as anti-euthanasia, patients won't talk to us about it."

Wayne and Lizzie talk openly about everything with each other. Wayne doesn't want to die at home, fearing it would be a burden on his wife. And he doesn't want to give up until the end. He was worried about pain, until his palliative care team put his mind at ease. But he says those who want help to end their lives when they are dying should have that right.

Wayne's life insurance has paid off the mortgage, and a security upgrade for their modest house. He wants Lizzie well set up. They have a Darwin holiday booked soon to visit a new grandchild. And a new patio where he can sit in the sun, decorated with rainbow-coloured lanterns and orbs of coloured glass. They glow when the light hits them.

Miki Perkins is Social Affairs Editor.

If you are troubled by this report, experiencing a personal crisis or thinking about suicide, you can call Lifeline 131 114 or beyondblue 1300 224 636 or visit lifeline.org.au or beyondblue.org.au

This story Working to provide a good death first appeared on The Age.