The important conversation we are saving for later
When it comes to discussing how we’d like to be cared for at the end of life, most of us have the best of intentions. We think it is important to let people know what we’d want. We just haven’t done it yet.
That’s one of the key findings from a new Palliative Care Australia (PCA) survey, released earlier this week to mark the start of National Palliative Care Week (22-28 May).
The online survey of 1000 people showed that while 82% of people think it is important to discuss their wishes with close friends or family, only 28% have had the conversation. So, why is that, given that 77% of people say they are comfortable talking about death?
PCA CEO Liz Callaghan said it reflects the common perception that death is most relevant to elderly people who are unwell. More than half (53%) of respondents said they hadn’t discussed end-of-life wishes because they were too young, and 43% said it was because they weren’t sick.
“That logic is understandable, but in reality, none of us know what is around the corner and as we all know, sadly even young people die, and they’re not always deaths that are expected,” Ms Callaghan said.
“Death is a natural part of life and it’s something that inevitably touches all of us. One in five people who completed our survey had experienced the death of a family member in the past 12 months.”
Ms Callaghan said there is no specific age when we should be outlining our wishes and the right time was different for everyone, but the discussion was too important to avoid.
“It was interesting to note that there were three survey respondents aged 75-84 who said they hadn’t had the conversation because they were ‘too young’ and one of those men had heart disease.
“Many people avoid discussing death until circumstances mean they are forced to face it, but that comes with a risk that you’ll be too unwell to express yourself or feeling stressed.
“The best time to talk is when you’re well and thinking clearly.”
Ms Callaghan suggested specific trigger points which can serve as reminders or be used to start conversations.
“When you write or update your will is a good time to start talking about end-of-life issues that extend beyond money and material possessions.
“Your adult children might understand that they will inherit your house, but do they know whether you’d prefer to die at hospital or at home?
“If they had to choose between quality and quantity of life on your behalf, would they know what you’d want them to do?”
Other times to consider having the conversation are when your GP conducts an age-related health check, if you are diagnosed with a life-threatening chronic disease, when you enter an aged care home, or when issues about health care or dying are raised on television.
Fear that discussions about death to may spark negative emotional responses was also apparent in the survey findings. Lung Foundation Australia CEO Heather Allen says this highlights the deadlock that can occur when people second-guess how others will feel.
“I found it interesting that many people (21%) are not raising the subject because they’re not wanting to upset their loved ones, and you can be sure the loved ones are not raising it because they’re not wanting to upset the person with the disease,” Mrs Allen said.
“I think just having clarity around what your loved one would like at the end of life is comforting for everybody, as it means the surviving family member is confident they are acting in accordance with the wishes of the person with the disease.”
The survey also provided evidence for this. Of people who had been required to make health care decisions for a family member who had died in the past 12 months, 86% reported that earlier discussions about end-of-life wishes had been helpful.
Motor Neurone Disease Australia national executive director, Carol Birks, said informing family members about end-of-life wishes can be a very positive experience for people with advanced chronic disease.
“Writing your wishes down or talking about them can help give you a sense of control over your future. This can be particularly important for people living with motor neurone disease, who often experience a spiralling series of losses.
“That’s very important. It helps if family and health professionals are able to encourage and support people, both emotionally and physically, to talk about their future care.”
Ms Callaghan says PCA has developed a Discussion Starter to assist with these conversations, which provides a step-by-step process with activities to help people work out what’s right for them.
“Once you know what you want to say, it also provides tips on how to start talking,” she said.
“Talking about dying might be hard, but it won’t kill you, and you might even find that your family is dying to talk too.”
Visit www.dyingtotalk.org.au to download the Discussion Starter.
- Frail elderly put new pressure on prisons to provide palliative care
- One third of elderly patients receive futile treatment before they die
- Symbolic works created with ink-filled syringe capture life and offer therapy
- The most intimate thing I’ve done in my life: Kylie’s story
- Vicarious trauma: a young nurse shares her experience