Terminally ill patients may avoid palliative care for fear of euthanasia

A senior hospice doctor has warned that terminally ill people will be afraid to enter hospice care following medical assistance in dying laws across the country.

Maria Cigolini, clinical director of palliative medicine at the Royal Prince Alfred Hospital in Sydney, said many people are already avoiding palliative care for fear that such units will facilitate euthanasia.

“It will reinforce this misinformation and fear of authority, especially among migrant groups and the homeless,” she said.

“Potentially Aboriginal people will avoid health care, as we saw in the Northern Territory during the brief period when VAD was proposed there.”

She mentioned the case of a man she knew whose elderly parents in Holland avoid going to the doctor for general health care because euthanasia is so prevalent there.

If VAD is to be viewed as a “situation of choice,” it should be managed outside of residential care for the elderly, rather than imposed on those situations, she says. The obligation to offer VAD in palliative care units can lead to “top-down” decisions in which doctors have no say.

“In some hospitals in Victoria, even if you can conscientiously object to it, there is no protection for it. This can create a situation where someone is killed in a palliative care unit and most staff will have to deal with this situation and prepare everyone as if nothing happened,” says Cigolini.

“The moral distress this will create, and the idea that people may worry about being next; the safety of the care environment can be compromised and create fear and distress among nurses, doctors, patients and residents themselves.

She says palliative care units have closed in Canada and many people have left palliative care because of these issues.

The World Health Organization has said palliative care is a human right that should be available to anyone with a life-threatening illness, but recently passed NSW VAD legislation contains no obligation to refer a patient to palliative care” or even to involve a specialist who may be able to ensure that optimal management of their condition is offered.

“Even though it’s presented as a choice, it really means a lot of people don’t have a choice.” – Maria Cigolini

Cigolini sees a degree of hypocrisy in the fact that the NSW legislation was passed without a requirement for adequate funding for palliative care, particularly in the regions, and without heeding the recommendations of the Royal Commission on Aged Care or expecting the findings of the Royal Commission into violence, abuse, neglect and exploitation of people with disabilities.

“So in terms of impact, it’s serious because even though it’s presented as a choice, it really means that a lot of people don’t have a choice – they have VAD but not the alternative of the high level of care approach,” she says.

“And in terms of funding, the federal and state governments are well below what should be for the development of adequate palliative care in all sectors, and especially in the regions and in care for the elderly.”

Cigolini says his research-backed clinical experience shows that when a person is in a positive therapeutic relationship with their doctor, they don’t feel the need to act on their desire to die near the end of life “because she feels supported and accompanied and helped enough in recent years, months or weeks or even days.

“Clinical experience based on the work of [Canadian psychiatrist] Harvey Chochinov found that the desire to die fluctuated wildly and depended a lot on the circumstances and who was in the person’s life,” she says.

Even being part of a study decreased the desire to die without any further intervention “perhaps simply because the person felt their life was validated.”

While patient factors, such as lack of family cohesion and feeling like a burden, fueled a patient’s desire to die, clinician factors were also important factors, according to research by medical researcher Brian Kelly, Pro Vice Chancellor (Research and Innovation) Office – DVC (Research and Innovation) (Public Health), University of Newcastle.

“Physicians who had a pessimistic view of patients and were not trained in palliative care, their patients were more likely to persist in their wish to die than those who saw a different kind of hope and were trained in palliative care,” she said.

“The actual legislative practices expected of clinicians and physicians are contrary to the standards of clinical practice and how to approach someone in this situation.”

“The way the process is framed creates undue influence.” – Maria Cigolini

Cigolini said the fact that a doctor could suggest VAD to a patient in NSW undermined a positive therapeutic relationship.

“Considering it’s a therapeutic relationship, the power of suggestion is so great and so it’s devoid of the usual rigor of history-taking and referral,” she says.

“Also for patient safety, standards are ignored in this bill. It is also inadequate on the issue of jurisdictional and mental health issues and there is no way to ascertain whether there were coercive influences. We know that elder abuse is a very serious problem and financial abuse is even more serious. So all of these things are by-products of bad legislation and will mean that mistakes are made and people miss out on what we should owe our older and vulnerable citizens.

“The preamble to the bill says there should be no undue influence, but the way the process is framed creates undue influence. They aren’t required to offer palliative care or other care under the bill, so it’s likely just helping to foster feelings of undiagnosed hopelessness and depression. It is therefore a great sadness. »

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