We want to die at home, but we don’t

You can have anything you want, at Alice’s restaurant. That’s what Arlo Guthrie says in one of his classic songs.  When it comes to death, it seems we get anything other than what we want.  This story from ABC Health & Wellbeing reporter Bianca Nogrady (The tough question we all need to think about: what type of death do you want? 22 Mar 2016) provides some insights as why this might be so.   Here are some extracts …..

Nogrady writes: ‘According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.

But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.

It’s easy to forget we have a choice: While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.

Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.

“People don’t like talking about their own mortality. But I think it’s really important as people do age that we initiate this conversation.”  Dr Frank Jones

“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.

The analogy with birth is a useful one because many of the same questions need to be considered:

  • Where would you prefer to be when you die?
  • What sort of medical care would you like?
  • What sort of interventions do you want to avoid?
  • Who would you like to have with you?

Have the piece of paper and the conversation: It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.

Directives often missed in hospital panic: Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.

Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.

This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.

Better infrastructure needed to support end-of-life choices: The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.

Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.

“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.

“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”  The full report can be found at: http://www.abc.net.au/news/2016-03-21/where-we-choose-to-die/7263154

 

 

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One Response to We want to die at home, but we don’t

  1. Helen Dunne says:

    Another great read, thanks for the insights and information.

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