If notions of a ‘good death’ are personal and subjective, then the only way to communicate what it is we would like to take place come our ending of day, is to talk about it. And keep talking about it. Seems this is easier said than done.
Anna Kelsey-Sugg, writing for ABC Rational National (The doctors who think it’s become too hard to die, Saturday Extra program, 28 July 2018) reports that we need to start talking and keep talking, about our end of life wishes.
‘Two intensive care specialists believe that much more discussion and collaboration needs to occur between patients, medical experts and families, in order to plan for a loved one’s death. They are concerned that the personal wishes of the dying may not be prioritised, especially if plans or their wishes have not been made clear to family beforehand,’ says Kelsey-Sugg.
Professor Ken Hilman, an Intensive Care Specialist at UniNSW and author of A Good Life to the End, taking control of our inevitable journey through ageing and death, says: the desire to keep sick people alive for as long as possible is reinforced by doctors who are “programmed to make you better”.
“Doctors hate saying, ‘I can’t do anything’. We’re curers, healers, miracle workers,” he says. The outcome is that it’s hard for us to recognise when a life is better left to end. “Half of the patients in my intensive care unit are in the last few days or weeks of life. Most of them are older people,” Professor Hillman says.
“One of the things that I find interesting, and I can only talk about the elderly and frail in this context, is that most of these people understand that they’re coming towards the end of their life.”
Advanced Health Care Planning is the document that speaks to all the stakeholders come end of life. BUT … rather than being a plan full of “ticked-boxes” it needs to set out what an individual person wants.
“It’s more saying, under these circumstances I would like little or no treatment,” Hilman says. For myself: “If I was doubly incontinent, if I was demented, if I was bed bound, if I had pain that couldn’t be treated — under these circumstances I would like no treatment whatsoever.”
Dr Charlie Corke, an Intensive Care Specialist at Barwon Health, Melbourne and author of Letting Go, How to plan for a good death, says medical practitioners also need to be honest with patients and their families when certain interventions might be futile.
“Doing the right thing at the right time is fantastic and doing the same thing at the wrong time is horrific,” he says.
Having a plan in place can help everyone — including doctors — act in the patient’s best interests. Advance Health Care Directives are the best way to get our thoughts down on paper. They help us see in written form what we think. If we like it, we sign off on it. If we don’t we can make changes and update our wishes as we progress through the ageing continuum. The best Directives are the ones that get reviewed as time goes by and get talked about with family and especially with our Enduring Guardian/s and Substitute Decision-Makers.
So what’s holding us back? Fear? lack of practice? We can’t practice dying but we can practice the language and become familiar with the process. It’s called death literacy. It’s not hard to learn. There are wonderful people working in this field. Each of us can become death literacy practitioners without very much effort. Check out this link: http://www.dyingtoknowday.org/death-literacy/
We have the encouragement of two respected practitioners to egg-us-on.
“When this goes well, what I see is somebody who’s set some very clear limits to what they wouldn’t want, the family are very clear about it and all agree with each other, and the doctors are given permission to not [intervene] and feel very comfortable it’s the right thing to do,” Dr Corke says.
Use the links here to read or listen to or download the story: http://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582 http://radio.abc.net.au/programitem/pgLGKre5O7?play=true http://www.abc.net.au/radionational/programs/saturdayextra/what-is-a-good-death/10042700