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In the end, it's complicated

In Australia and around the world, governments are grappling with the many fraught issues attached to voluntary assisted dying. Talking about death is still seen as taboo but, as ECU experts argue, it's a conversation we should all be having.

It's understandable that the better we have become at living, the less we want to talk about dying.

The way most of us manage the certainty of death is by not even thinking about it – until we're confronted with our own mortality or a loved one's dreadful diagnosis.

While most polls show overwhelming public support for the right to choose your end-of-life, it remains a fraught issue. Even supporters of voluntary assisted dying (VAD) legislation acknowledge the many difficulties it presents.

As found in the community, the ECU experts we interviewed had differing concerns about how society should deal with end-of-life. But one thing they all agreed on was the importance of the discussion. We need to talk about death.

Death and dying is a topic that's not been comfortable for society to talk about.

The right to choose

Professor Davina Porock, from the School of Nursing and Midwifery, is an end-of-life expert whose research includes recognising dying, to ensure transition to comfort‑focused care and the care of people living and dying with dementia.

"Assisted dying is a logical step in a progressive society to now be seriously looking at this issue of choice at the end of life," Porock says. "That's what we've been fighting for all these decades, from our rights in childbirth, abortion, the right to choose who we live with and who we love, and medical treatment.

"People go to enormous lengths to fulfil the wishes of a person after they've died ... so why is it in that little bit of time when they are actually dying that they're not allowed to have control?

"In terms of living well, contemplation of your own death and those of your family is a good thing. As Plato said, 'The unexamined life is a life not lived'. Death is the point which makes us examine that and helps us to live better. As a society we're now saying we've got to think about this: how do we want to live and how do we want to die?

"And just because the legislation is there doesn't mean you have to use it. One of the things found in Oregon [US] – where this legislation has been in place for over 20 years – was that even though not many people take up the prescription, and of those who do even fewer actually use it, it helped people have the conversation [about dying] because it was one of the options, and it actually increased the amount of palliative care they accessed.

"We also have to remember it's the disease or the trauma killing the person, not the VAD medicine. We are just controlling the end point and making it so the family is there and it is the kind of death the person wants."

Determining your own bias

Professor of psychology Alfred Allan, within the School of Arts and Humanities, has co-authored a paper on the ethical issues of working with terminally ill people who want to hasten their end of life.

"Practitioners really need to think about whether they feel comfortable working in the end-of-life area because you don't want to be confronted with a situation and not understand how you really feel about it," Allan says.

"The research is very, very clear that unconscious bias will strongly influence how practitioners respond. If you look at psychologists who determine whether a person is actually autonomous in making a decision about ending their life, those who say the client is not acting autonomously are often people who don't support euthanasia, and the other way around. The risk is that somebody who feels really strongly about euthanasia may nudge a client in that direction, while another would be more likely to do the opposite.

"Of course, if you've got a client talking to you and they are terminally ill, it is a very difficult thing to say, 'I don't want to talk to you about this'. It could be seen as a form of rejection.

"I believe the psychologist should put the client's interests first, but I can see for some psychologists that would be impossible because it would be in such a conflict with their values.

"I actually think psychologists should play a bigger role in end‑of-life discussions. They can be supportive, they can identify whether a person should get medication for their anxiety or depression, or they can just figure out what a person really needs to address at this moment in time."

The role of palliative care

Karen Anderson, from the School of Arts and Humanities, is a psychotherapist and counsellor who has worked in palliative care for many years.

"Death and dying is a topic that’s not been comfortable for society to talk about," Anderson says.

"Yet in the past, it was just seen as a part of living. So the good thing out of this debate is getting people to talk about what was previously seen as too frightening.

"People often hear the term 'palliative care' and think it's the end of the road. If I mention to someone, 'You can have some palliative care' they will go, 'Oh, I'm not there yet'! They may well be dying, but it may be a year away and palliative care can ease symptoms.

"There are some people who suffer so badly, and over an enduring period of time, where I can understand and appreciate to have assistance to die would be good. But the vast majority of people experience the dying process with all its challenges and individual uniqueness, and that pain can be looked after and cared for with palliative care services.

"If you have to have three doctors sign [the request to die] and have cognisant powers, things can change very quickly. A person might be enduring for a long period of time in a vegetable state because they haven't signed that form early enough. Whose wish, then, is being acknowledged? Is it the wish of the patient or the wish of the family?

"It's emotionally loaded, but it’s also quite a philosophical debate because ... part of what strengthens our human experience is to be exposed to that suffering. The question is how much suffering, for how long and at what depth? And in palliative care, when that suffering is attended to, usually it works and the person drifts quietly off, so it’s not as if there's nothing that can be done."

The decision to end treatment

Fiona Foxall, director of Undergraduate Nursing Studies in the School of Nursing and Midwifery, is completing her PhD on what happens in intensive care when a patient is incapable of making decisions.

"Withdrawing treatment allows the patient to die from their disease process," Foxall says. "When doctors and nurses determine that a patient is not going to survive, and if the patient were to survive their functional capacity and quality of life would be so poor it would be considered a life not worth living, at that point they determine that the treatment is futile – and legally and ethically it is not permissible to give futile treatment.

"But advisory bodies like the Australian and New Zealand Intensive Care Society advise doctors very strongly to ensure they reach consensus with the family because if families say, 'No, please continue treatment' and the doctors think, 'No, we’re going to withdraw it because it's not appropriate', we end up with cases of litigation or a patient who has a protracted dying process, being kept alive artificially with a potential of increasing their suffering.

"We're not looking after the best interests of the patient at the end of their life. We are no longer benefiting this patient; to continue would just cause further harm, and this patient should be allowed to die.

"What the doctors and nurses in my study said is the families of loved ones who tend to say, 'No, I want you to continue treatment' tend to be the families who've never discussed end-of-life issues with each other because death is a taboo subject. But I think it is a conversation that every single human being needs to have with their loved ones. And you can't have it in intensive care because the patient is moribund. We need mass public education about what happens in intensive care at the end of life."


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