Take control of your end of life care

Explore and document the terminal care and treatment you want to receive when the time comes.

Health Agenda magazine
January 2017

Given its inevitability most of us give surprisingly little thought to the advent of our own death. It’s a time fraught with emotion and, in many cases, incapacitation, but you can make the transition easier on yourself, and those you leave behind, with a little planning.

Ask yourself the following questions: at what point do I call stop on resuscitation? What trauma am I willing to subject myself to for prolonged life? And what shape would that life take? Longer doesn’t necessarily equate to better.

A living will, or as the experts call it ‘advance care planning’, is not the sole province of the old; it documents your preferences for medical treatment, if you’re unable to express them due to illness or injury.

The choices people face at this time are myriad, and though it’s impossible to be completely prescriptive – after all, most people don’t know how they’ll go – it’s worth considering things like do not resuscitate orders, switching off life support in the case of an irreversible coma, and whether or not to have chemotherapy and/or radiation after a certain age or diagnosis.

Why it matters

“Advance care planning is like insurance,” says Dr Karen Detering, Medical Director of Advance Care Planning Australia, the peak body in this country. “I take out car insurance not because I intend to have an accident but so I have a plan in the event.”

Dr Detering has specialised in advance care planning for more than 13 years. She says one challenge for the ACPA is framing advance care planning as a positive experience. “And it is, because it gives back the individual control and choice,” she asserts. “Studies show those who access advance care planning have a higher level of satisfaction with the care they receive,” she says.

Start the discussion

In terms of timing for starting the process, the ACPA encourages health professionals to raise advance care planning with patients at key times such as when the person “is diagnosed with a significant new health condition or there is a change in their situation, to look at what they’re dealing with now”, Dr Detering suggests.

Being admitted to hospital can be a useful trigger to advance the discussion as well. “Other times might be if somebody’s care needs to change, they become more dependent or require more support, or have to go into a care facility,” she says.

Ideally, talk about it with a health professional, she advises. “If you don’t know what’s on the shopping list you won’t know what to put in the trolley. Refer to your values and beliefs, any treatments that you specifically don’t want and why not. I think advance care planning is helping people make the best possible decisions for themselves in that they determine what the best possible decisions look like.”

She stresses that it’s important to keep your plan up to date as things may change down the track. “It’s a living document and a living process.”

At the pointy end

At the stage where end-of-life planning comes into effect, a doctor might work out options either with the patient or “if they can’t be involved due to their condition, that’s where the decision maker comes in”, Dr Detering says.

The kinds of choices people make about their end time come down to personal factors, such as whether someone wishes to stay in a familiar environment rather than be transferred to a regional hospital, for example. Sometimes what doctors think are priorities for care may not match the individual’s.

“There are lots of things that people will trade off when we come to the pointy end,” Dr Detering explains. “We’re trying to help people to navigate difficult circumstances and decisions.”

In terms of accessing the framework tools to put a plan in place, health services and government departments are generally good places to look. Don’t let it be something that you put off indefinitely. Choose how you leave this world, with power and dignity.

Advance care planning: the four steps

1. Talk about personal preferences and how those things, and perhaps your beliefs, will inform your care.
2. Discuss your plan with family, key support people and health professionals. You may choose to appoint a decision maker with medical power of attorney. Some prefer to leave this role to the medical professional in charge of their care.
3. Document your wishes. No lawyer needed, just make sure a chosen family member has a signed and dated copy.
4. Regularly review your plan.

The ACPA has an advisory service to direct people to doctors or hospitals that can provide framework documents.