Living wills

Plan and talk about how you want to spent your final days.

I was having dinner with a girlfriend recently when the conversation took a rather alarming turn. She is funny, naughty, playful, erotically inclined. So to break the monotony of work I relish her delightful company.

We were telling wicked stories, and rolling about laughing when — bang. She hit me between the eyes with a story that took my breath away. Literally.

What had she been doing the past two weeks? She had gone to see NSW Trustee & Guardian (government executors) about her advance care plan.

It’s a recent extension to our will system whereby, before we lose power of our senses by accident, or cancer, or sudden stroke, or even something as mundane as getting hit by a car on the way to pick up the pizza, we have outlined in writing for our loved ones and medical carers the sorts of decisions we want honoured.

Kimberly O’Sullivan, a Sydney-based researcher, archivist and journalist in her 50s, says she never knew the advance care directive existed until recently, when she was sent notification that it was wise to make a living will as they do in the US and Europe, even when very young.

The point is to no longer just nominate a power of attorney for legal and money matters but also an “enduring guardian” to look after your health and soul — along with writing a detailed plan with your GP that allows you a say in treatment in the event that illness or tragedy strikes and you become impaired, especially if it’s relatively early in life — which so few of us consider.

It’s not new to have people casually discussing with family how they want to be cared for, but it’s not particularly effective.

One nameless person in my family recently announced over dinner: “Just pull out the plug!”, starting a conversation that ended in tears.

When I tried to broach the subject with my daughter because I was going in for an operation, there was anger: “Don’t talk like that! Mum you are such a drama queen!” then grief. It made the discussion impossible.

Nor does discussion have much legal weight. OK, got it — “pull the plug” — but at what stage and under what conditions? As the excellent resource site explains in depth, it’s complicated.

Kimberly sat down with a doctor for an hour. She says it was very confronting: “I never thought it would go that far and into so much detail. It was stressful, the questions I had to answer, the circumstances I had to wrap my head around … like, if I were in a coma, at what point would I like life support turned off, what if I was going to wake up brain damaged and paralysed? What degree of permanent impairment are you prepared to live with and at what point not wish to be resuscitated? At what point would living be intolerable for you?”

The fact is that living wills — as they are called in the US — or advance care plans or directives are becoming the latest trend as medical advancements mean it is possible to maintain life indefinitely.

The dialogue is being pushed because of the ageing population and the legal hot potatoes of liabilities with regard to interventions, most notably euthanasia. So medical professionals and governments around the world are working hard to involve people in advance care planning but also to nut out uniform legislation.

As the NSW Trustee & Guardian booklet says: “We have very little choice over when exactly we will die but increasingly we are gaining some degree of control over how we might die.”

Kimberly says: “It’s not euthanasia; rather, it’s when not to prolong life artificially. It’s hard to consider your own mortality or being a burden to family, being impaired and dependent on others for feeding etc.

“But I think this is important to do because even though we might become silenced and disempowered physically, it’s a way of having our voices heard, brought to the table, expressing our wishes, to doctors and carers who will then know who we are as people.”

“I also want an enduring guardian who will represent me in lifestyle and medical care issues with compassion and competence.”

Some of the issues explored are attitudes to tube feeding, CPR, tracheotomies and breathing support. What degree of pain management does one want? To greet death being heavily sedated?

Flexibility was another factor of the discussion. Living wills can be changed frequently to keep up with technological breakthroughs or changes of heart.

The form Kimberly filled out appeared similar to the Victorian model I found on the Health.vic website, with some deeper questions included such as: “The things that I most value in life are: (for example: independence, enjoyable activities, talking to family and friends, spiritual or religious beliefs, pets); What I would like known that may help with future medical decisions (what are your worries/fears, what compromises are you willing to make); If unable to be cared for at home, the following would be important; If nearing death, the following would be important: (eg music, spiritual care, customs or cultural beliefs, family present) …”

Kimberly says it was a profound experience: “It had a real emotional dimension that I didn’t expect. Sitting there, I just realised how grateful I was for every moment I wasn’t having to suffer such horrible, awful things, and be in good health here now,” she said, laughing and raising a glass, and allowing us finally to get off death and talk about sex.

At the moment countries around the world differ, and states within countries differ, in how the agreements are legislated.

The Victorian government is drafting specific legislation with submissions due by end of this month; in NSW the living wills and enduring guardianship fall under common law.

But it’s messy having different laws: what if someone from one state gets hospitalised in another?

Also the agreement forms are not uniform. While I’ve seen a version of the Victorian form, NSW advance care directive websites just advise to write things down casually with a GP and get it witnessed.

In the US an organisation called Aging with Dignity started a version called Five Wishes, which can be done online, with more than 18 million documents already distributed worldwide, but I don’t know what the legality is here in Australia. It combines a living will with healthcare/guardian power of attorney and includes things such as:

• Wish 1: the person I want to make care decisions for me when I can’t.

• Wish 2: the kind of medical treatment I want or don’t want.

• Wish 3: how comfortable I want to be (what type of pain management you would like, personal grooming and bathing instructions, hospice care).

• Wish 4: how I want people to treat me (personal matters, such as whether you would like to be at home, whether you would like someone to pray at your bedside, among others).

• Wish 5: what I want my loved ones to know.

Overall, Kimberly feels the experience ultimately is life-affirming: “It makes you want to eat up life.” Like many of her friends in their prime, I too have been inspired to empower myself and have a voice in my future before it’s too late.

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