A good death has no formula. Inevitability is the only shared truth. For some, it may be a no-fuss , painless drifting into another realm. Others might see it as a celebration: their favourite music ringing out in a room packed with loved ones.
But as the debate around end-of life care intensifies , many are leaving little to chance, and turning to safeguards they hope will help them die well.
While once, decisions on medical treatment and pain relief were the only things to consider when writing advance-care plans – which outline wishes in the case of incapacitation or terminal illness – increasingly, people are recording detailed instructions on how they want their emotional and spiritual needs attended to in their final days.
Five Wishes – dubbed the ‘‘ advance-care directive with a soul’ ’ – is the latest movement to hit Australia, having proved so popular in the US that more than 19 million people have signed the not-for profit’s end-of-life planning forms.
Launched here last week, its personalised , less clinical approach to the business of dying appears to be its draw card, with users able to record explicit wishes on everything from who they want to forgive on their deathbed, to whether they want to be massaged with warm oils or have poetry read to them.
While the first two ‘‘ wishes’ ’ deal with legal and medical treatment matters, the other three are more holistic and include clauses such as how often the signatory wants to have their hair brushed or teeth cleaned, who they do, and do not, want in the room when they die, and what happens to a person’s social media accounts after they are gone.
For John Kumnick and his wife, Anne, from Doncaster – who are both in good health but mindful of not being a burden to their two daughters at the end of their lives – creating a Five Wishes living will was a collaborative, family decision that gave them peace of mind.
‘‘ I’ve seen other documents that are very clinical – name of doctor, name of lawyer, preferred funeral director, bank accounts and all that sort of stuff, which is technical and procedural. This is a more humane document, it attends to the personal side of end of life, and that appeals to us,’’ Mr Kumnick said.
Christina Widuckel, chief executive of Colbrow Healthcare – a nursing and care service that brought Five Wishes to Australia – said there was a growing appetite for personalised end-of-life planning.
‘‘ We noticed that most other advance-care directives and planning tools were very much focused on people’s illness and they really only came into effect when someone was sick,’’ she said. ‘‘ But dying is not a medical experience, it’s a human experience. Five Wishes is very much focused on mind, body and spirit, not just the person’s illness. It’s a much more gentle way of introducing the topic of end-of-life care.’’
However, there are concerns that as more versions of advance-care directives become available, their legal weight will be diminished.
About 7 per cent of Australians are believed to have an advance-care directive, with their legal standing varying from state to state. In Victoria , refusal-of-treatment orders are covered by statutory law and apply to current and future illnesses. But the robustness of documents such as Five Wishes, which are covered by common law, has yet to be tested.
End-of-life care specialist Associate Professor Bill Silvester, who founded the Austin Hospital’s Respecting Patient Choices advance-care directive, said evidence from NSW, where 40 such documents exist, suggested more choice was not always helpful.
‘‘ The concern about having all these different forms is that it ends up being confusing for patients and for doctors,’’ he said. ‘‘ We’re now working with the state government to have a standard, uniform, simple advance-care directive document used right across the state. It makes it easier for people to understand and it also means it’s more likely the doctors are going to follow it.’’
He said he was also concerned that long documents with ‘‘ warm and fuzzy’ ’ details were unlikely to be taken into account in critical situations : ‘‘ If I’m a doctor in the emergency department and I’m having to get on and make urgent decisions, or in the intensive care unit, to be honest, I just don’t think people are going to follow it because they’re just not going to have the time.’’
Source: Jill Stark | SundayAge | Fairfax Media
1st June 2014
Five Wishes Downloadable Forms
- ABA Consumer Toolkit For Advanced Healthcare Planning
– Downloadable PDF – bitly.com
Five Wishes – Downloadable Forms – Good advance planning for health care decisions is, in reality, a continuing conversation – about values, priorities, the meaning of one’s life, and quality of life. To help you in this process, this tool kit contains a variety of self-help worksheets, suggestions, and resources. There are 10 tools in all, each clearly labeled and user-friendly. The tool kit does not create a formal advance
directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and
communicating what is important to you in the face of serious illness. This toolkit not only gives guidance to you, who will be the future patient, it also gives guidance to the person who will act as your health care proxy.
- Advanced Care Planning Conversation Guide
– Downloadable PDF – bitly.com
Five Wishes – Downloadable Forms – We’d like to think that our loved ones will always be healthy, independent and able to make decisions for themselves. But things can change suddenly. They might have an accident or a serious illness and no longer be able to speak for themselves. When that happens, doctors often turn to their loved ones to speak for them. If that happens, will you know what care they would want?
Talking with loved ones now and helping them plan for future medical needs is the best
way to make sure that their wishes will be respected. But, talking about this is not always easy. The California Coalition for Compassionate Care has developed this guide to help you start the conversation.
- Advanced Health Care Directive Fact Sheet For Consumers
- Five Wishes Form
- The Physician Orders for Life-Sustaining Treatment (POLST)
– Downloadable PDF – bitly.com
Five Wishes – Downloadable Forms – California is a POLST state. This is the California version of the POLST form. The POLST form is a form that follows you from say a hospital to a nursing home or a hospital to a hospice home so that the medical professionals in the new facility you are going to know your wishes.