Dying to Know Day

None of us like to admit it, but the unfortunate fact is that we are all going to die.

How it happens and when is usually beyond our control, but it’s essential that we tell those around us what we want when the time comes.

Dying to Know Day is part of an annual campaign that aims to remove the stigma from the topic of death. Sunday, August 8, is one day of the year when the taboo is suspended and people are encouraged to ask questions, have conversations, express feelings, and make plans.

Caroline Belfanti is the Nurse Manager Community Palliative Care Team at Sydney’s Calvary Health Care Kogarah Hospital.

She says while Dying to Know Day covers areas such as writing a will or making funeral arrangements, its most important function is discussing end-of-life plans with loved ones, and highlighting the role palliative care plays.

“Its aim is to raise awareness of what palliative care is, making dying (the ‘D’ word) part of the normal conversation,” Ms Belfanti says.

“We don’t talk about dying, there is often no plan, and quite often decisions are made in a crisis so people don’t know what your wishes are prior to an event.

“So what can happen is that there is an acute event and you end up in the emergency room and you are already on that treadmill. By the time medical teams get hold of families, things have already started.

“So it’s important to have that conversation first, to ask, ‘If you are really unwell, and can no longer make decisions for yourself, what is it you want to happen?’.”

Ms Belfanti says it is difficult to have these conversations in advance, as “they are not comfortable conversations to have, so they are not had”. But they can really make a difference.

“It’s hard, being able to sit while feeling uncomfortable and having those conversations, because they are confronting.

“We all know we are going to die but we don’t know when. If you get diagnosed with a life-limiting illness that  question is still not answered, you are living with uncertainty.”

Ms Belfanti says also it’s important to know palliative care is more than just comforting the dying.

“When people hear they have been referred to palliative care the first thing they think is, ‘am I dying’. But it’s much broader than only end-of-life.

“It’s our job to support people. It’s allowing people to know what their options are, choices are, and supporting them to live well with their illness. It’s also about having conversations about what is an appropriate treatment and what is not – burden vs benefit.

“We educate families on the normal process of dying, because dying has been taken out of homes, and we don’t see it because it’s been medicalised. People generally don’t know what end-of-life looks like, they get their ideas from TV.

“But it’s not like the movies. Dying is a messy business. Like birth, both ends of life can be hard and don’t always go according to plan.”

She says that, for example, statistically 70% of Australians say they want to die at home, “but I think that question is asked of a well population”.

“If you were to ask that question of a person facing a life-limiting illness their answer might be ‘I want to stay home as long as possible for as long as I am not a burden to the family’.”

Palliative Care teams usually have a pretty systematic way to work through things. But again, Ms Belfanti says there is a need to talk.

“If we get a referral from someone who may be dying in a couple of days it’s much harder as you are having these conversations right now,” she says.

“It’s much easier if you have time to build a rapport, to ask: ‘Do you have an advanced care plan, have you thought of what you’d like if you become too unwell to be at home or can’t make decisions for yourself, does your family know what you want – to be at home or in hospital?”

Ms Belfanti says while dealing with end-of-life, palliative care is vastly different from the idea of voluntary assisted dying (VAD).

“VAD and palliative care are separate things,” she says. “As Calvary’s mission is focused on healing and accompanying the dying we would not offer nor facilitate VAD at Calvary; but if a patient wanted to request VAD we would not abandon them, we would still care for them.

“But again, it’s essential we make sure people know all their options, and explore just why they are asking for VAD.

“Often people might ask the question and then it’s put to bed, as the number who actually want VAD are quite few in my experience. Generally, people want more time, not less.

“End-of-life is all around dignity, around easing suffering, and acknowledging the fear and the challenges and that sometimes for a small proportion of the population despite the provision of the best palliative care suffering can persist.

“We need to be able to have the conversations about these issues and not simply request VAD because of a lack of palliative care.

“Perhaps the bigger question is equity and  access to specialist palliative care services, and is that why people are asking for VAD as their symptoms can’t be managed?

“People in our area have an excellent palliative care service, but you don’t get that in all metropolitan or rural areas.”