Monday is Dying to Know Day, the culmination of a national campaign that asks people of all ages and stages of life to have conversations around the reality of death and dying.
The Dying to Know Day campaign outlines simple steps people can take around end-of-life planning, because not talking about death and dying is a significant obstacle to improving how we live and die.
Professor Richard Chye, the Director at Sacred Heart Supportive and Palliative Care, St Vincent’s Health Network, Sydney, says Dying to Know Day is about getting people to talk about their wishes, and planning care right from the start when they are still well.
Professor Chye says this is important not only for those facing imminent death, but also for those who may have a life-limiting disease they may live with for years.
For example, a patient with heart failure, or a young patient who has kidney failure and has begun renal dialysis, may, in the absence of a transplant, survive for many years but could also suffer complications that shorten their lives.
“Lots of people think palliative care is purely end-of-life care, when in reality it starts from when an illness that can’t be cured is diagnosed,” he says. “Yes, the disease will catch up with them, but that may be years ahead.”
Professor Chye says that, as a palliative care specialist, when he sees a patient his first job is to improve their quality of life, working with them to make things tolerable, and he does not even talk about the “D” word yet.
“Once I get to know the patient and have their confidence, then we talk not about that ‘D’ word, but advance care planning – the what ifs, using the old adage planning for the worst, hoping for the best.
“And families are important when it comes to advance care planning, especially making sure they are aware of their loved one’s wishes and are open about those wishes.
“This includes what treatments patients are willing to have, what they are willing to tolerate, and those they are not.”
Palliative care has been raised frequently during recent debates about voluntary assisted dying (VAD) legislation.
Professor Chye says palliative care and VAD are separate issues. About one in 20 patients facing end of life will indicate they want to die.
This can range from “someone who is 90, says they have had enough, have had good a life and their innings has come to a close” to those “who may be in a lot of pain or psychological and family distress and who feel they would be better off dead”.
“Some will accept palliative care but still express the wish to go when their time comes, saying ‘don’t keep me artificially alive’,” he says.
“But for many of those considering VAD, who feel in a lot of distress, if that stress is solved the want for VAD can go away.”
Professor Chye says the key point is putting adequate palliative care at the centre of the discussion.
He cites a conversation with a NSW MP, whose father was confined to a nursing home after a serious stroke. He was upset that the home allowed his bed-bound father to be doubly incontinent, which made his father’s quality of life very poor, and because of that he was in favour of VAD laws.
“Was his father’s very poor quality of life because of the stroke, because he was in a nursing home, or because he was not getting proper care? It was obviously the latter,” Professor Chye says.
“So the question is, should we be allowing VAD, or should we ensure residents in any care are provided at a much better level of care?”
Professor Chye says a big problem with palliative care is a lack of training in many levels of the medical profession, even when many professionals are already treating patients in a way that could be considered palliative.
“I use morphine to control pain, to make patients more comfortable,” he says. “Cardiologists treat their patients with drugs to improve breathlessness, reduce leg swelling, to improve their symptoms and function of the patient. Aren’t they both palliative?
“But with palliative care they could also try to reduce the psychosocial distress associated with heart failure, and make sure the family is well aware of what the patient wants and does not want.
“For example, even with the very sick it’s not routine for doctors to ask what you do and don’t want – say to treat you, but not resuscitate you if your heart stops.
“These are things we need to change, and the way to do that is to improve expertise of all my non-specialist palliative care colleagues – cardiologists, GPs, nurses, nursing homes, psychologists, physiotherapists – so they can recognise a patient is in distress, and may even be dying, but also that lots of tests and medicines may not be what that patient wants.”