Are you afraid of death? What is it about getting older that makes people reluctant to talk about what happens at the end of the road – or to even prepare for it?
At the Palliative & Aged Care Forum in Melbourne, HelloCare spoke to Danny Vadasz, the CEO of Health Issues Centre (HIC), the leading consumer health advocacy body in Victoria.
HIC seeks to gain a better understanding of the barriers discouraging public discourse about end of life, “we couldn’t reconcile the fact that people generally think that Advance care planning is a good idea and yet the uptake is very low”.
“It’s a bit like organ donation – everybody thinks it’s a good idea but then not as many people follow through.”
“People are quite adept at planning for their very end of life,” Vadasz says, explaining that people have wills, do estate planning, plan their own funerals down to what music is played and who is invited, “but they don’t seem to want to think about how they are going to get to that end of life position”.
Through a series of consultations, a few things became clear to HIC, “it’s not so much death that people are concerned about – because everyone knows they are not going to escape it – it’s about the implications of decline, both cognitive and physical.
What’s stopping people from talking about death is dying is the fear of their loss of independence, how that impacts on their sense of identity.
“When we have conversations with people, there are two themes that come up most strongly – becoming a burden and loss of independence”
“In what they feel is becoming a ‘burden’, is having to be assisted by their children or local services in maintaining their life at home,” something that many family and services are willing to do and offer without judgement.
People tend to struggle with the idea that there are things that they can no longer do on their own, “if you say to a 75-80 year old person ‘I don’t think you’re coping well, I think we should have someone come cook your meals a few times a week and help you with the gardening and cleaning’”, they tend to respond negatively to the offer.
“But if you offered that to you or me, we’d love it. When you say that to someone older and their response would be ‘I don’t need any help’” and it is from there that they associate that with a loss of independence and being a burden.
Vadasz says their findings are not surprising, “why would anyone want to think about that? It’s not exactly a happy ending”.
“That made us realise that before you start having a conversation about advance care planning or end of life choices, you need to start having those ‘pre-conversations’ about the inevitability of decline”.
Pre-conversations, according to Vadasz, are conversations around topics like what’s it like if you’re in a wheelchair or what’s it like if you lose your sight or if you can no longer perform the basic functions, that you have taken for granted all your life but also define who you are.
“So the first advance care planning conversations that you’re going to have are not going to be ‘do you want to be resuscitated?’ it’s more likely to be ‘I think you should give up the car keys because you’re becoming a danger’
The key message Vadasz is emphasising that as a society, we need to start thinking earlier about when those signs of decline begin and what are the conversations we need to have to help people to adjust to that.