American geriatrician and palliative care specialist Dr Diane Meier visited Melbourne recently to speak at a free public forum about dying, called ‘Death Happens! So let’s talk about how we die’. Dr Meier is the director of the Center to Advance Palliative Care, which works to increase the number and quality of palliative care programs in the US.

What key issues did you raise at the Centre for Palliative Care’s forum?

The key issue was that access to palliative care should be based on need, not prognosis, and that it is needed within the broad population of people with serious or complex illness no matter how long they may live, and not just at the end of life.

I told the story of a young woman who had just finished her medical training and was diagnosed with lymphoma of the chest. Because she did her medical training in a hospital that provided palliative care, she knew what palliative care could do to relieve suffering and symptom distress whether caused by the disease or by its treatment, so she insisted on simultaneous palliative care along with treatment of her lymphoma. That would not have been offered had she not insisted, but she is now cured. She tells whoever will listen that she never would have gotten through her extremely difficult treatment without support of both the oncology and the palliative care team.

I also told the story of a man who we met when he was 87, who had very severe lower back pain and dementia. His general practitioner didn’t know how to manage lower back pain in an older person with dementia, and thought opioids were dangerous and contraindicated in that situation, so the elderly man kept using emergency care and the hospital system when standard analgesics failed to help him. That stopped once he started getting home-based palliative care, which was a lot cheaper for the health system and much safer for him. Hospitals are quite dangerous for frail older people because of infection risk among other complications. He is now 90 and with supportive care he hasn’t needed to attend the emergency department and continues to live at home with his wife.

The public associate palliative care with dying and that’s our fault. That perception reflects the barriers to access that we have put in place. Our limited staffing means that patients must be closer and closer to death to get access to palliative care. The question is, are we comfortable with denying the best quality of life possible to anyone who is struggling with a serious illness, and if not, what can we do to change it.

The forum aimed to encourage discussion about dying. Do you have any good questions or tips that might help to get those difficult conversations rolling?

I think encouraging people to talk about death is a mistake. It is asking people to do something counter-intuitive and counter to our evolution as a species. Our survival as a species has been about pushing off death, not accepting it. That is a primal urge, not an intellectual or cognitive process.

Instead of talking about death and dying, the discussion should be about a having the best possible quality of life for as long as possible. How could we as a nation, in a standardised reliable way, make sure that all of our most seriously ill and complex patients have access to skilled palliative care, no matter what stage of disease, where they are, their age, or their diagnosis? That vision makes sense to people and public opinion in US is strongly supportive of moving in that direction. You can get people behind that.

Once people are dead, they are dead. Their need is in the years before death. We have no idea when people are going to die until just before it happens (usually days, to at most, weeks). Framing palliative care as end-of-life care makes it irrelevant to many of those with the greatest need – those living – often for many years, with a serious and complex illness.

Someone can have a significant burden of disease, say dementia or heart failure, or an uncertain prognosis, without being at the end of life. By defining palliative care as end-of-life care, we exclude millions of people in need – those like the young woman with lymphoma described above, who might be cured, and those who live with the burden of chronic illness for years.

It sounds like you see scope for palliative care to be redefined, given how we tend to frame it in Australia?

Palliative care does needs to be redefined. You’ll see on our website that our definition makes absolutely no reference to death. It focuses on palliative care as being an added layer of support to maximise quality of life during serious illness. We don’t use the term advanced illness, because that term equates to terminal in the minds of both the public and clinicians.

Our approach came from extensive discussions with people in the community about what they needed during a serious illness. Nobody said ‘We need a good death’. No-one is interested in that. They are interested in a good life, support for their family, relief from pain and symptoms, and a clear understanding of what is happening to them and what to expect.

We’ve been taking that approach for about six years and when I travel around the country and look at colleagues’ brochures, I can see that they’re starting to define palliative care as an approach that improves quality of life for anyone with serious illness, and their families, through provision of an added layer of support.

Did that represent a significant shift in thinking and was it controversial?

Yes, there was resistance, and I was accused of turning my back on the dying. The central paradox of palliative care is the best way to help people eventually get a good death is not to advertise it that way. People are terrified of palliative care because they think it will help them die. You need to define it as something that will help them live as well as possible.

For the family, it also helps to overcome that sense of abandonment that they feel when they say, ‘yes my mother is dying’. It is much easier for the family to align themselves with the idea of reducing suffering and improving quality of life.

I see ambivalence about this in Australia. The problem is that although there is general agreement with that new definition of palliative care, people have great difficulty letting go of the old one. But the minute you mention death, a good death or dying, everything else you’ve said gets pushed out, cognitively, because of the emotional reaction to the focus on end of life.

Given what you’ve said about aversion to discussions about death, what is your take on advance care planning?

We have been talking about advance care planning for 25 years in the US and I’m afraid that care has only gotten worse in that period. The idea that an advance care plan – by itself – actually changes what happens to people at the end of life would be laughable if it wasn’t so sad. That depends on system design and access to resources that are beyond the patient’s control.

The New York Times ran a story about a 91-year-old man who clearly expressed his wish over and over to die at home. In the last years of his life, he shuffled back and forth between the hospital and nursing home with tremendous physical, spiritual and emotional suffering, even though his wishes were crystal clear and recorded in his advance directive, because no one – not the government, or his family – were able to pay for the personal care support he needed at home.

Where advance care planning can be of value is in helping a family unite in their decision making, because of their clear knowledge of what their loved one would have wanted. There is a lot of family trauma and guilt and regret and conflict in end-of-life decision making and I think everyone has a stake in preventing that if possible. Advance care planning is important in reassuring families about the decisions they are making when a patient loses the capacity to do that for themselves.

What are your personal philosophies and wishes in terms of your own death and the process of dying?

Here’s the problem. I have no idea what I’m doing to die of or how I’m going to feel. I think my key job is to find someone close to me who I really trust and a clinician I can trust, so they can make decisions in real time about what makes sense for me.

I cannot possibly anticipate what it will be like, or what my situation will be. This is why the public resist advance care planning. How do you make a decision about something that is a complete unknown?

Every situation has a context and is specific from person to person, so you can’t make a blanket set of preferences or recommendations.

As a palliative care doctor, I have had patients who have said they never want to be on a ventilator and yet they have pneumonia and a good chance of returning to baseline if I put them on a ventilator. If they are someone who is functioning independently at home, as opposed to someone with end-stage-dementia, I have to talk their family out of complying with their loved-one’s  advance care directive, because sometimes technology or treatment is appropriate if it can achieve a desired goal.

I would trust my clinician along with the family member I have asked to represent me for medical decision-making (called, variously, a surrogate decision maker, a health care proxy, or a durable power of attorney for medical care) to make the best possible decision for me in the circumstances. The one piece I of guidance I would give is that if I was cognitively impaired – so severely that I couldn’t recognise or interact with my family – and unlikely to ever recover from that, then I would want care to focus on my comfort. That is the only circumstance I could be clear about now.

What do you think is the most common misperception about death and what impact does it have?

I think the most common misperception is that death is terrifying, painful and miserable. A fear of death is generally based on lack of experience with death and how it is portrayed in the media and in movies and TV shows. For some people, that misperception is based on experiences with bad deaths that occurred because of a lack of palliative care.

More than 90% of deaths are quite peaceful. People just get weaker and sleepier and slip into a coma. After a while in coma, their breathing becomes irregular after a while and during one of the pauses in breathing they die. It’s usually very peaceful and feels very natural and something humans can handle, as we have been doing for many thousands of years.