Rachel Coghlan first witnessed death as a four-year-old when she watched her grandfather collapse and die in front of her. Later, as a physiotherapy student working as a carer in a nursing home, she found a woman dead in her bed. A nurse taught her not to recoil and instead showed her how to bathe and dress the body.
Later again, working as a physiotherapist in London, she watched as a man from Sudan struggled to weigh up a diabolical choice between staying in the UK to access treatment, or returning home to his family but with no prospect of healthcare. He chose his family.
All three deaths laid the pathway for Coghlan’s decision to work in and research palliative care. After working in public health and research for more than a decade, she decided to return to hands-on work as a clinical palliative care physiotherapist in early 2020. “I figured I had a lot to give in that area. I wanted to find out what matters most to people and then support them on that journey.” Then the pandemic hit.
For more than two years now, Covid has provided a daily reminder of a very specific picture of death; a death experienced alone save for medical staff armoured in PPE, family’s faces shining off an iPad. A disproportionate number of those lonely deaths have been in aged care. Earlier this month, federal health minister Greg Hunt was admonished as “disrespectful” after he pointed out that “approximately 60% of those that have agonisingly passed have been in palliative care … The definition is that they have passed with Covid, and they are absolutely rightly counted as a national loss. But approximately 60% of those that have passed were in palliative care.”
Hunt’s figures were later disputed, but palliative care professionals speaking to the Guardian interpret the distinction as a subtle inference that somehow these deaths are less important, and are concerned that such labels fuel a common misconception about palliative care treatment itself: that it is exclusively for people who are on the verge of death. The sector is already under resourced, struggling with fatigue and grappling with the fallout from witnessing immense loss, not just in terms of the number of deaths but of what people have ultimately been denied as a result of this pandemic – a decent death.
Misunderstanding and denial
“Palliative care is about helping someone to live as well as possible for as long as possible,” says Coghlan. She is also a board director for Palliative Care Australia (PCA), whose 2021 annual survey found only four in 10 Australians know that a person can ask for palliative care when they are first diagnosed with a terminal, chronic or degenerative illness.
Three-quarters of Australians will likely utilise palliative care but many don’t understand the type of service it offers, partly because as a discipline it’s still not embedded across western medical practice, either at an institutional or educational level.
Coghlan remembers the absence of the subject of death while training as a physiotherapist. “We didn’t talk about it. Even if you were on a hospital ward and a patient that you were treating died overnight, it was kind of just brushed over,” she says. “Palliative care wasn’t something that we were trained in or taught about. It never ever really crossed my mind.”
“Almost no one who starts off in medical school gravitates to this area of medicine,” agrees Dr Helen Farrell, who’s worked as a palliative care physician across community- and hospital-based care for Barwon Health in Victoria for more than a decade. “Certainly as a med student I saw palliative care as largely pillow fluffing and hand holding.”
Farrell had been working towards the field of gastroenterology. “I was seeing young people, primarily with liver disease, who were dying terribly. The focus was on trying to keep them alive rather than to keep them living as well as they could be. They were viewed as a liver rather than a whole person.”
During a relieving term, Helen was allocated a covering position in palliative care. Suddenly she was introduced to “a field of medicine where the focus is on the person themselves, they’re the most important feature, rather than the disease process they happen to be living with.”
Fundamentals of good death disrupted
It is palliative care’s intricate and personalised model – involving families, specialist health workers and volunteers – that has been disproportionally impacted by Covid.
“We had to pivot to telehealth almost as soon as I returned to working as a palliative care physio,” says Coghlan. “And that has meant that some of our patients may have gone two years without having in-person contact with a health professional. It really affected the ability to build trust with a patient, build rapport with them and their family – and to be able to sit quietly with them, if they’re feeling upset or they are suffering.”
Anna Nicholas, a clinical nurse consultant in palliative care at the Royal Hobart Hospital who’s worked in the field for more than 21 years, says: “Our bread and butter is about providing a rich service full of compassion, dignity, and making it individualised, and all of a sudden, all of that has been thrown up in the air and we have to see what we can catch as it comes down.
“At the heart of palliative care, it is about caring. It’s about supporting families. It’s about providing one-on-one attention. So all of a sudden we’ve stripped back how many family members can come. Then we’ve stripped back essential people that are important in our service, such as allied health; so less contact with physiotherapists or occupational therapists, really important people like pastoral care and volunteers that are really integral to our service.”
Nurses like Nicholas have not only had to fill the gaps left by these services, as well as cater to an increasing demand for in-home care due to patients’ reluctance to go to hospital, they’ve also had to help families grapple with unimaginable choices such as how to limit the numbers of loved ones allowed by the bed. “How does a family member pick who gets to come and say goodbye?”
And although Tasmania may have been comparatively sheltered from the direct effects of Covid, it has shut its borders. “And a lot of people … finish university and everyone flies off and don’t come back and then we have to call them to say, ‘your mum or dad’s dying’, or your sister or your brother. And they’ve been unable to come back to Tasmania.
“We don’t know the long-term consequences yet of these grief and loss issues.”
Palliative care is often a “hard area of medicine to work in,” admits Farrell. “We see the best in people, but quite often we also witness families in terrible distress. Usually we get to counter that level of distress by getting to do the good things. Firstly, we can help them feel as good as they can in order to do the things they want to be doing, to help them tick off their bucket list, and then we can help them return to their home town, or spend time with loved ones, or go to the theatre.
“The joy of this job comes from enabling people to do those meaningful things. And then, when those things are just not allowed, it’s distressing to watch these people being denied … their last wishes.”
Coghlan remembers treating a man who had terminal cancer. “We had this big, intense family meeting and everyone agreed to try to get him home. I helped him walk back to his room. He spoke very little English. As I went to help him to sit down in his chair, he grabbed me and drew me into a bear hug. We didn’t talk. And then his wife joined in the hug. Within an hour we found out that he had been a close Covid contact and he was put into isolation and he died the next day without getting home.
“I had the last hug,” says Coghlan. “There’s countless stories like that – health professionals having to hold people’s hands because the family can’t be there. We just don’t know the fallout of those things yet.”
The value of a decent death
For Nicholas, the past two years of deprivation has highlighted how integral palliative care should be in health considerations. “It’s so important to refer early to palliative care. It’s an incredibly important specialty, just like cardiology or paediatric medicine. Palliative care is a very strong entity and specialty in itself that underpins lots of other areas of medicine and nursing.”
The Lancet Commission on the Value of Death report, released last month, echoes Nicholas’s sentiments. The commission proposes “that our relationship with death and dying has become unbalanced, and we advocate a rebalancing. At the core of this rebalancing must be relationships and partnerships between people who are dying, families, communities, health and social care systems, and wider civic society.”
The Lancet commissioners began work well before the pandemic, but then wondered if writing a report on death as Covid ravaged the globe would be welcomed or even informative. In fact, they argue, the Covid lens on dying in such a lonely, medicalised way has only served to illuminate the value of a good death. “Death and dying must be recognised as not only normal, but valuable. Care of the dying and grieving must be rebalanced, and we call on people throughout society to respond to this challenge.”
“Working in palliative care is a privilege – it can make such a difference,” says Nicholas. “Just as it’s important to get the way we come into the world right – to have a good birth – it’s absolutely critical that we get death and dying right. Because it’s about what you leave for your family and friends, and that’s what people are going to remember.”