‘I had the last hug’: Hospice workers lament the good deaths Covid has taken | Society

RAchel Coghlan first witnessed death at the age of four when she watched her grandfather collapse and die in front of her. Later, as a physiotherapy student working as a nurse in a nursing home, she found a dead woman in her bed. A nurse taught her not to back down and instead showed her how to wash and dress the body.

Later still, working as a physiotherapist in London, she watched a man from Sudan struggle to weigh 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.

The three deaths paved the way for Coghlan’s decision to work and research palliative care. After working in public health and research for over a decade, she decided to return to practical work as a clinical palliative care physiotherapist in early 2020. had a lot to give in this area. I wanted to find out what matters most to people and then support them on that journey. Then the pandemic hit.

For over two years now, Covid has provided a daily reminder of a very accurate picture of death; a death experienced alone except for armored medical personnel in PPE, the faces of the family shining on an iPad. A disproportionate number of these solitary deaths took place in aged care facilities. Earlier this month, Federal Health Minister Greg Hunt was chastised as ‘disrespectful’ after pointing out that ‘about 60% of those who died in agonizing circumstances were in hospice care… The definition is that they succeeded with Covid, and they are rightly counted as a national loss. But about 60% of those who died were in hospice care. »

Hunt’s figures were later disputed, but palliative care professionals speaking to the Guardian interpret the distinction as a subtle inference that these deaths are somehow less important, and fear that such labels fuel a common misconception about the palliative care treatment itself: that it is exclusively for people who are on the verge of death. The sector is already underfunded, struggling with fatigue and grappling with the fallout of an immense loss, not just in terms of the number of deaths, but what people have ultimately refused as a result of this pandemic – a decent death.

Palliative care involves working with families to provide as good a life as possible for as long as possible. Photography: Portra Images/Getty Images

misunderstanding and denial

“Palliative care is about helping someone 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 that only four in 10 Australians know a person can seek palliative care when they first receive it. a diagnosis of a terminal, chronic or degenerative disease.

Three-quarters of Australians are likely to use palliative care, but many do not understand the type of service it provides, partly because as a discipline it is still not integrated into Western medical practice, either at the institutional or educational level.

Coghlan recalls the absence of the subject of death during his training as a physical therapist. “We haven’t talked about it. Even if you were in a hospital ward and a patient you were caring for died overnight, it was kind of just glossed over,” she says. “Palliative care was not something we had been trained or taught to do. It never really crossed my mind.

“Hardly anyone who starts out in medical school gravitates to this area of ​​medicine,” acknowledges Dr Helen Farrell, who worked as a palliative care physician in community and hospital care for Barwon Health in Victoria for more than a decade. ‘a decade. “Granted, as a medical student, I saw palliative care as largely being puffing pillows and hand holding.”

Farrell worked in the field of gastroenterology. “I saw young people, mostly with liver disease, dying terribly. The focus was on trying to keep them alive rather than making them live as well as they could. They were considered a liver rather than a whole person.

During a relief tenure, Helen was assigned a palliative care relief position. Suddenly, she was introduced to “a field of medicine where the focus is on the person themselves, that is the most important characteristic, rather than on the disease process with which they live”.

The Fundamentals of the Good Death Disrupted

It is the complex and personalized model of palliative care – involving families, specialist health workers and volunteers – that has been disproportionately affected by Covid.

“We had to switch to telehealth almost as soon as I got back to work as a palliative care physical therapist,” says Coghlan. “And that means some of our patients may have gone two years without having in-person contact with a medical professional. It really affected the ability to build trust with a patient, to relate to him and his family – and to be able to sit quietly with him, if he was feeling upset or in pain.

Anna Nicholas, Clinical Nurse Consultant in Palliative Care at the Royal Hobart Hospital who has worked in the field for over 21 years, says: “Our daily bread is to provide a rich service that is compassionate, dignified and to make it individualized, and all of a sudden it’s all been thrown up in the air and we have to see what we can catch as we go.

“At the heart of palliative care, it is about caring. It’s about supporting families. It’s about providing individual attention. So all of a sudden we reduced the number of family members who can come. Then, we removed essential people who are important in our service, such as paramedics; therefore less contact with physiotherapists or occupational therapists, really important people like pastoral care and volunteers who are really an integral part of our service.

Nurses like Nicholas have not only had to fill the gaps left by these services and meet a growing demand for home care due to patients’ reluctance to come to the hospital, but they have also had to help families make faced with unimaginable difficulties. choices such as how to limit the number of loved ones allowed per bed. “How does a family member choose who can come and say goodbye? »

Anna Nicholas says caring, supporting families and providing individual attention are at the heart of palliative care
Anna Nicholas says caring, supporting families and providing individual attention are at the heart of palliative care. Photography: The Guardian

And although Tasmania has been relatively safe from the direct effects of Covid, it has closed its borders. “And a lot of people… finish college and everybody just flies away and doesn’t come back and then we have to call them and say, ‘your mom or your dad is dying’, or your sister or your brother . And they couldn’t get back to Tasmania.

“We don’t yet know the long-term consequences of these grieving and loss issues.”

Palliative care is often a “difficult area of ​​medicine to work in,” Farrell admits. “We see the best in people, but very often we also see families in terrible distress. Usually we manage to counter this level of distress by doing the right things. First, we can help them feel as good as possible to do the things they want to do, help them check off their to-do list, and then we can help them get back to their hometown or spending time with loved ones. those, or go to the theater.

“The joy of this work comes from allowing people to do these meaningful things. And then, when these things are just not allowed, it is heartbreaking to see these people being denied… their last wishes.

Coghlan remembers caring for a man with terminal cancer. “We had this big, intense family reunion and everyone agreed to try and bring him home. I helped him back to his room. He spoke very little English. As I went to help him sit in his chair, he grabbed me and pulled me into his arms. We did not talk. And then his wife joined in the hug. Within an hour we found out he had been a close contact with Covid and he was put in isolation and he died the next day without returning home.

Former Queensland AFL great Ross Whyte, suffering from terminal prostate cancer, in March 2021 with his family and friends who joined him on a visit to The Gabba in Brisbane to realize his last wish.
In March 2021, former Queensland AFL great Ross Whyte (centre), suffering from terminal prostate cancer, was joined by family and friends to grant his dying wish by visiting the Gabba in Brisbane. Photography: Darren England/AAP

“I had the last hug,” Coghlan says. “There are countless stories like this – medical professionals have to hold people’s hands because family can’t be there. We just don’t know the fallout from these things yet.

The value of a decent death

For Nicholas, the last two years of deprivation have highlighted how integral palliative care should be to health considerations. “Referral to palliative care early is so important. It’s an incredibly important specialty, just like cardiology or pediatric medicine. Palliative care is a very strong entity and a specialty in itself that underpins many other areas of medicine and nursing.

The Lancet Commission Report on the Value of Death, released last month, echoes Nicholas’ sentiments. The commission proposes “that our relationship to death and dying has become unbalanced, and we advocate a rebalancing. At the heart of this rebalancing must be the relationships and partnerships between dying people, families, communities, health and social care systems and wider civil society.

The Lancet commissioners began working long before the pandemic hit, but then wondered whether writing a report on death as Covid ravaged the world would be welcome or even informative. In fact, they argue, Covid’s focus on dying in such a solitary and medicalized way only served to illuminate the value of a good death. “Death and agony must be recognized not only as normal, but as precious. Care of the dying and bereaved needs to be rebalanced, and we call on people across society to respond to this challenge.

“Working in palliative care is a privilege – it can make such a difference,” says Nicholas. “Just as it is important to have a good understanding of how we come into the world – to have a good birth – it is absolutely essential that we obtain death and death correctly. Because it’s what you leave to your family and friends, and it’s what people are going to remember.

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