Dying to talk? It won’t kill you

“Nursing homes, devoted above all to safety, battle with residents over the food they are allowed to eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that are actually shortening lives instead of improving them. And families go along with all of it.”

“That which does not kill us, makes us stronger,” said the 18th century German philosopher, Friedrich Nietzsche and I think that applies to the message at the heart of last week’s National Palliative Care Weekwhich was: Dying to talk: Talking about dying won’t kill you.

It’s a great line, isn’t it?  And coming hot on the heels of my recent story about ‘Being Mortal’ – prompted by seeing the US doctor and author, Atul Gawande, at the Sydney Writers Festival – it makes a lot of sense to me!

Talking about dying really won’t kill you.  On the contrary, it will almost certainly make things better for you and your loved ones when you do go.  And we are all going at some point.

On the flip side, NOT talking about dying can definitely make things worse for you and everyone else too.

One of the key themes in Atul Gawande’s book, Being Mortal, is about the modern medical profession’s profound discomfort with talking about death.  Thanks to advances in science and lots of money – provided primarily by governments and private insurers – the medical system has become excellent at staving off death but not so good at knowing when to stop.

All of the harm and none of the benefit

Gawande says the US Medicare system spends 25 per cent of its total budget on the five per cent of people who are in their final year of life, with most of that money going toward care in their last couple of months; even the last week.

At this point, he told the Sydney Writer’s festival audience, the patient receives, “all of the harm and none of the benefit.”

How to decide when to stop, however, is not easy, as Gawande readily acknowledges. It is more than just deciding ‘medically’ when to stop trying to wring another week or month from increasingly risky, unpleasant and often very debilitating medical treatments.

We should hope for the best and prepare for the worst.

As the promo for the book says: “Nursing homes, devoted above all to safety, battle with residents over the food they are allowed to eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that are actually shortening lives instead of improving them. And families go along with all of it.”

“Doctors tend to just assume that safety and health are paramount to people when we should be asking them: Are you lonely? What would you like? People have priorities in addition to living longer,” he says.

Having the conversation

The problem is that doctors and patients don’t have that conversation enough – less than a third of the time he says. Taking many of his cues from the palliative care profession, whose basic skills he would like to see incorporated into medical training for all doctors, Gawande believes that there are five core questions that should shape the conversation about dying:

  1. What is your understanding of where you are and of your illness?
  2. What are your fears or worries for the future?
  3. What are your goals and priorities for the remainder of your life?
  4. What outcomes are unacceptable to you? What things are you willing to sacrifice and what will you never compromise?
  5. What would a good day look like?

He says research with cancer patients demonstrates that people who had these kind of discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.

While it’s a conversation for doctors and their patients and families, he stresses anyone can have it and it should be the norm.

Plans in advance

In Australia, the medical profession agrees.  In a statement by the Australian Medical Association (AMA)supporting Palliative Care Week, AMA Vice President, Dr Stephen Parnis, said the AMA “encourages people to reflect on, and discuss death and dying with their loved ones and with their doctor before a health crisis happens.”

“It is important that people have their wishes fulfilled as they approach the end of their lives, but that does not often happen.”

“Discussing death is profoundly confronting, but it’s important to talk with family and loved ones about how, and where, you would like to be cared for at the end of life.

“It is important that people have their wishes fulfilled as they approach the end of their lives, but that does not often happen,” Dr Parnis said.

One of the wishes frequently expressed by people is to receive more palliative care and to die at home, he said.  Yet while 70 per cent of Australians expressed that preference, “only one in seven actually gets that wish,” Dr Parnis said.

Ensuring your wishes do get followed means making a plan and making sure your loved ones know about it, as well as your doctor.

The AMA strongly encourages everyone to consider advance care planning, a process by which an individual provides preferences about their health and personal care, including their preferred health outcomes, goals and values of care which can guide treatment decisions.

It also includes identifying who you would like to make decisions on your behalf, should you lose decision-making capacity in the future.  It’s a discussion that can take patients of all ages within the primary care environment or hospital setting.

A final message

Palliative Care Australia is encouraging Australians to have that difficult conversation about end of life care and what they want to happen to them.

“It is a challenging but really necessary talk that will mean your family can advocate for the death you want when your time comes,” says PCA President Professor Patsy Yates.

“We should also take that conversation beyond medical issues alone. Where do you hope to be when you die, who do you want with you, what will give you comfort?”

Dr Atul Gawande summed it up well: “We should hope for the best and prepare for the worst.”

We can’t say we haven’t been told.

Helpful links:

Palliative Care Australia:  http://palliativecare.org.au/
Advance Care Planning Australia:  http://advancecareplanning.org.au/
Choosing Wisely:  http://www.choosingwisely.org.au/
Alzheimer’s Australia – Advance Care Planning & dementia:  https://fightdementia.org.au/support-and-services/families-and-friends/advance-care-planning

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A special thanks to our contributors

Caroline Egan

DCM Media, agedcare101

Caroline has a wealth of experience writing within the retirement and aged care sector and is a contributing journalist for the Villages.com.au and agedcare101 blog and accompanying newsletters.

Ian Horswill


Ian is a journalist, writer and sub-editor for the aged care sector, working at The DCM Group. He writes for The Weekly Source, agedcare101, villages.com.au and the DCM Institute fortnightly newsletter Friday. Ian is in daily contact with CEOs of retirement living, land lease and the aged care operations and makes a new contact every week. He investigates media releases, LinkedIn and Facebook for a good source for ideas for stories.

Lauren Broomham

Retirement and Aged Care Journalist

Lauren is a journalist for villages.com.au, agedcare101 and The Donaldson Sisters. Growing up in a big family in small town communities, she has always had a love for the written word, joining her local library at the age of six months. With over eight years' experience in writing and editing, she is a keen follower of news and current affairs with a nose for a good story.

Jill Donaldson


Jill has been practicing as a clinical physiotherapist for 30 years. For the last 13 years she has worked solely in the Aged Care sector in more than 50 metropolitan and regional facilities. Jill has also toured care facilities in the US and Africa and is a passionate advocate for both the residents in aged care and the staff who care for them. She researches and writes for DCM Media.

Chris Baynes

DCM Media, agedcare101

Chris has been a journalist and publisher in the retirement village and aged care sectors for 11 years. He has visited over 250 retirement villages and 50 aged care facilities both within Australia and internationally. Chris is a regular speaker at industry conferences plus is a frequent radio commentator.

Annie Donaldson

Nurse and Carer

Annie has a long career in both nursing and the media. She has planned and co-ordinated the medical support from both international TV productions and major stadium events. In recent years she has been a primary family carer plus involved in structured carer support.