End of life conversations
Telling loved ones your end-of-life preferences lightens the load for everyone
End-of-life conversations offer a host of benefits to people facing death, and to their families and friends. They provide opportunities to explore and define the kind of care we want as we approach our last days and moments. These conversations mean confronting the limits of medical and palliative care and the reality that life is finite — facts that can trigger mental and emotional alarm for some.[i]
So it’s no surprise that some doctors and their patients are cautious when it comes to discussing death, and that many people avoid or delay these conversations till the last minute, or until it’s too late.
In a large, often-cited study named Coping with Cancer, the authors reported that nearly two-thirds of terminally ill patients said they’d never had a conversation with their doctors about their end-of-life care, despite having just four months to live.[ii]
The study also found that the one in three patients who did have end-of-life conversations with doctors were more likely to accept that their illness was terminal. These patients also voiced a preference for treatments that focused on relieving their pain and discomfort in preference to choosing life-extending therapies.
There were other benefits, too. Patients who had end-of-life conversations with doctors were less likely to be resuscitated, had less depression and worry, and were less likely to end up in an intensive care unit or to have aggressive medical interventions near death, such as intubation and mechanical ventilation.
Also, six months after these patients died, their families were less likely to be depressed and felt more prepared for their loved one’s death than families of patients who didn’t have end-of-life conversations and who endured aggressive medical interventions near death.
Said another way, people who have practical conversations with doctors about their preferences for their end-of-life care seem more likely to die a ‘good death’ while sparing their families a lot of heartache and distress.
While these findings mightn’t be surprising, they’re not well known or discussed either in healthcare circles or the wider community. Even if they were, it’s still likely that they’d be unwelcome. Our compulsion for finding a fix for death means we’re ignorant and afraid to talk about what we might want until it’s too late.
Beyond specialties like palliative care, there’s almost no discussion about end-of-life conversations. But the costs are heartbreaking. If you have any doubts, watch Extremis — a documentary that shows the devastation experienced by three dying patients and their families because they didn’t speak up sooner about their life and death choices.
The question is, when your days are numbered, do you want to have serious medical interventions that you didn’t choose yourself?
Do you want your kids and loved ones forced to make life and death choices for you, because you didn’t speak up sooner?
Do you want them to have to live with the consequences?
Stories about families burdened by making life and death decisions for their loved ones are far too common. So are stories of doctors taking matters into their own hands — sometimes against the wishes of patients and families.
The tragic case of Marlise Munoz, a pregnant 33-year-old woman, is a case in point. A day after she collapsed at home, Munoz was declared brain dead by doctors. But against her family’s wishes, doctors kept her body on ventilators because they said they had a legal duty of care to her unborn 14-week-old baby.
In 2014, teenager Jahi McMath was declared brain dead after complications from what should have been a routine tonsillectomy. Authorities at the Children’s Hospital in Oakland wanted to turn off the 13-year old’s artificial life support, but her family resisted and transferred her to another facility where her body was maintained by a mechanical respirator.
These examples are just two of many such cases that add to the debate and controversy about defining death, including brain death.[iii] [iv] They also highlight the catastrophic cost of prolonging life beyond its limits despite the high emotional and financial cost to families, health carers and health insurers.
It’s estimated that 30 per cent of all healthcare dollars are spent on medical efforts to prolong people’s lives — with 80 per cent of that money spent in the final month of life. A lot of this heartbreak and expense happens because most of us haven’t made a living will and told someone about it.
Now is your opportunity to speak up about what you want and don’t want before it happens. Some people want the full treatment, no expense spared, intervention at all costs. Others want a quiet dignity that spares them from the prolonged pain and trauma that can accompany medical interventions intended to extend people’s lives.
The internet makes it easy to create and register a living will (also called an advance care directive) and to appoint a healthcare proxy — someone authorised to make decisions about your medical and end-of-life care if you can’t make these decisions yourself.
Advance care directives are meant to advise doctors about what you do and don’t want but they are not legally binding in all circumstances or legal jurisdictions.
For example, In the Australian state of New South Wales, the NSW Supreme Court has said that valid advance care directives must be followed. This is because they are a part of a person’s right to make decisions about their health.
If an advance care directive is valid, it must be followed. Health professionals and healthcare proxies have no authority to override a valid advance care directive.
In New South Wales, a treating doctor will consider your advance care directive to be valid if three conditions are met: you had mental capacity when you wrote it; it has clear and specific details about treatments that you would accept or refuse; and, it applies to the situation you are in at the time.[v]
Advance Care Planning Australia has a multi-language online resource library containing information, forms, case studies, articles, videos and fact sheets to assist advance care planning.
If we all talked to our family about our choices and completed advance care directives, we could lighten the load for everyone — not least for ourselves, but especially for our loved ones.
[i] Puri, S (2019). The Lesson of Impermanence, The New York Times, March 9
[ii] Wright AA et al (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), pp 1665–1673
[iii] Gostin LO (2014). Legal and Ethical Responsibilities Following Brain Death: The McMath and Muñoz Cases. JAMA, 311(9), pp 903–904
[iv] Juahar, S (2019). What is Death? The New York Times, 16 February
[v] NSW Ministry of Health (November 2018). Making an Advance Care Directive, ISBN 978–1–76000–996–0
