“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 Week which 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:
- What is your understanding of where you are and of your illness?
- What are your fears or worries for the future?
- What are your goals and priorities for the remainder of your life?
- What outcomes are unacceptable to you? What things are you willing to sacrifice and what will you never compromise?
- 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.
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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
Discussion2 Comments
It is imperative that equal focus is given to the “home” and “nursing” component of a “Nursing Home”. While most operators are confident in the delivery of clinical care, Atul Gawande raises some great points about happiness and what defines wellness.
At my “home” I can go to the fridge when I chose.
I can eat what I chose.
I can make decisions that might be bad for me.
I can take risks.
Let’s not just extend life, focus on reducing risk and limiting liability. Let’s educate and support staff and families of residents to support what a happy and purposeful existence looks like for the resident.
More them-less us.
Thanks Helen, that’s exactly the point Gawande is making. If we don’t have that conversation, then we don’t even get the chance to say. He was quite funny in fact when he spoke about the silliness of not letting dying people have ice cream or cake if they want it because of their cholesterol or diabetes. “For Pete’s sake, give them the ice cream!” Notwithstanding the control and dignity issues, there is an certain madness in those sorts of rules. Keryn