Advanced Health Directive done and dusted

To make an Advanced Health Directive has been on my mind for about a year, but I’ve put it off, for no good reason.

Thou shalt not kill, but need not strive, officiously to keep alive

Making decisions about what care I’d like at the end of my life seemed to make very good sense but thinking and talking about it took courage. I guess no one likes to think about their death.

As my favourite cardiologist says, ‘Old people die, Maureen. It’s what we can all expect.’

Over the past few years, I’ve witnessed the deaths of friends. I haven’t like what I’ve seen. Previously, they’d made wills, donated their Enduring Powers of Attorney and appointed Guardians to make decisions about how they lived. But they failed to provide instructions for their end of life care.

I watched as they struggled with long term, chronic illnesses that severely disrupted their lives. Their quality of life deteriorated. They were no longer capable of making decisions for themselves. In their last few weeks before they died, they were subjected to surgery or resuscitation following cardiac arrests and some had several admissions to the intensive care units of teaching hospitals.

Some of us would think of such treatment at the end of one’s existence as futile. Through such treatment lives may be prolonged, but the quality of life can deteriorate dramatically. Futile treatments prolong the distress of those who witness it, as well as creating an additional burden on the health system. I do not want either of those to happen.

Legal consideration

Without written, signed legal instructions from the dying person, Legal Guardians and family members cannot direct doctors and nurses to stop treating their loved ones.

I really don’t want my life prolonged when I am dying, nor would I contemplate euthanasia. Assisted suicide is not my idea of a good death.

There is now a legal document which spells out my wishes if I am unable to make my own decisions about futile treatment. I would, however, expect to receive palliative care and to be kept comfortable.

Perhaps I could have included my directive in My Health Record, although I opted out of that. You can read why in my blog here.

Process for preparing an Advanced Health Directive

I took advantage of the MyValues website and completed the easy questionnaire about end-of-life decisions. This helped me to sort out emotional issues and clarify my values. It took about twenty minutes to complete. I printed the resulting document and attached it to my Advanced Health Directive. It helps to clarify what I have written.

The Advanced Health Directive form is available at Australian Post Office shops and some newsagencies, or it can be downloaded from the internet.

I also spoke with my daughter and son-in-law, a doctor, before completing my Directive.

Now that I’ve written my wishes, I feel liberated and confident that my plan will be accepted and acted on if needed.

And, for light relief after that, here’s a poem written by Arthur Hugh Clough in the 19th Century. The quotation at the top of this blog comes from this sarcastic poem, which is based on the Ten Commandments.

A poem which applies to the Advanced Health Directive

22 thoughts on “Advanced Health Directive done and dusted

  1. Yes, Maureen, i completed my Advance Care Plan over 12 months ago and, again yes, it gave me a deep sense of freedom.

    • Yes, Elizabeth, it was a liberating experience, and one my family appreciated, as well.

  2. A helpful post, given current concerns in my family. I had thought we’d coveted all ground, now I’ll revisit the process. Thank you, Maureen.

    • Thanks Susan. Glad you found the post thought provoking. I’m not sure that making an Advanced Health Directive is always as easy and straight-forward as mine was. People find the thought of their own death quite a distressing subject to deal with.

  3. Sounds like a really good thing to do, to cover all bases.
    I should add, though, that if a patient is incapable of making decisions, in the absence of an Advanced Health Directive or other documentation, doctors will consult with family to make decisions and will certainly withdraw treatment if everyone agrees. For example, in a very elderly person with dementia, the family and doctors may agree to provide comfort care only for a serious new acute condition. I had several of these discussions with families as a GP caring for nursing home patients.
    Of course, problems arise when family members disagree as to whether treatment should or shouldn’t be given. Hence, getting everything sorted like you have is ideal!

    • I should add that the cases I’m referring to where treatment was withdrawn were ones in which the treatment of the new acute condition was likely to cause significant distress or pain, and/or without much likelihood of recovery.

      • I did understand that, Fiona, but thank you for clarifying. My health directive is in case of new, acute conditions and without much chance of a return to improved health.

    • Thanks for your support and comment, Fiona. I think in at least one of the cases where a friend died after several attempts to resuscitate and provide heroic treatment the family may have disagreed about what was in the person’s best interests. That was what prompted me to take some action after thinking about it for a long time.

      I also wonder about the care of residents in aged care facilities when they become acutely ill. There seems to be a need on the part of staff to ship them to an acute hospital where they are admitted to intensive care units, submitted to surgery, etc. I worked in aged care (as CEO of Advocare at the end of my career, but also as a casual nurse on and off for years.) I thought, and think, that the ideal would be if the staff of aged care facilities and general practitioners were better trained to provide palliative care. Of course this would demand more staff, and more funding.

      • Yes, family disputes as to what the best care entails are common aren’t they?

        And I agree with you absolutely – better training in palliative care would be so good, for both medical practitioners and nursing staff (probably most needed for the doctors). It’s such an important time in a person’s life, and requires such excellence in care.

        It sounds like you have had a great deal of experience in this field during your career. Thanks for the discussion, I always enjoy reading your perspective.

  4. Good job Mum – and a very clear and informative post
    It is so important to be confident that you will receive the care you choose at the end of life, or if you are not able to express your wishes.

    • Thanks for your comment, help and support, Jenny. I hope it never becomes necessary for my family to make decisions about how I die, but good to have a clear understanding, just in case it is necessary.

  5. Very good blog Maureen, you have struck a chord. Having just lost our dear and much loved Bro-in-Law your article is very relevant and a timely reminder. I will return to your Blog to follow up and prepare one for myself and will speak with family too, about this. I love the way you did the VALUES checklist first. A great thing to do..
    Thanks Maureen, another Blog full of wisdom and ending on a poetically thoughtful, perhaps radical note.

    • Tricia, My condolences for your family’s loss.
      I’m glad my post wasn’t too over-the-top disturbing. I wondered how it would be accepted. I urge you to speak with your family about making an Advanced Health Directive and especially whoever you’ve appointed Guardian if you are no longer able to make decisions. The values checklist was amazing. So unemotional and right as a way to sort out what I wanted.
      I love that Clough poem, and as you say it is very radical, but makes sense, too.

  6. Good for you. We did ours last year after a very traumatic time with our daughters marriage break up.It is comforting to know that you will be cared for as you wish.It takes pressure off other family members too.

    • Thanks for your comment, Maureen. Yes, I think making end of life decisions takes pressure off family members, as well as going some way to having a peaceful death. I hope your family is settling down now. Warm wishes.

    • It took me the best part of a year to get organised, Sue! And not very brave, more like writing a Will. I really don’t fancy being a burden on my kids or others when my life quality is poor, so that made the decisions easy to make.

      • Yes, I can really understand that.

        I didn’t give much thought to my own death until my husband died. He had battled and come through two years of cancer and some awful surgery, he remained cheerful, convinced he could beat it.

        On his 68th birthday we were told his cancer was back, it had spread, he was given an estimate of a few months to live, but just two weeks later he was gone.

        I think I aged overnight, it made me realise that death has no scruples, it can take any of us at any time. I felt vulnerable and was certain I wouldn’t live to be elderly, I’d probably be gone long before that.

        Today, six years on, I take life as it comes, what will be will be, but I’m not sure about planning ahead.

        At 87 my dad had suffered a couple of strokes, his speech had gone completely and he couldn’t walk, I visited him daily in hospital, he would take my hand and tears ran down his face. He never came home and died a month later from pneumonia. I have no idea what he would have wanted, but I do know that the last month of his life must have been dreadful for him.

        At 81, my mum had lung disease, she was on oxygen 24 hours, she could no longer walk more than a few feet and could do very little for herself. We brought her to live with us and because she couldn’t manage the stairs we turned the dining room into a bed sitter. I cut my hours to part time and arranged care for the mornings.

        Once when she was admitted to hospital for a short while she was asked, if her heart gave out would she want resuscitating. She was horrified at this, life was such a struggle for her, but she wasn’t ready to give up on it.

        Mum died in hospital a few months after moving in with us. She turned to the nurse who was helping her into bed from her chair and said “Oh, I do feel cold”. Minutes later she was gone, so peacefully, and just as I arrived at her side.

        It makes me realise that whatever I might think now, I have no idea how I’d feel when the time comes.

        • Your reply on the topic of Advanced Health decisions brought tears to my eyes, Sue. Thank you for your considered response, and your beautiful stories of your husband and parents in their last months and days.

          I guess my response is that an Advance Health Directive only applies if the person is unable to make decisions for themselves and is unlikely to recover. Like you, I certainly do not know what decision I’d make if faced with the end of my life and I could make my own decisions.

          My own directive is that if (1) I am unable to make a decision for myself because I have suffered a major catastrophic event like a stroke or head injury, or am demented past being able to make decisions, communicate with my family or keep myself clean, and also, (2) I am highly unlikely to recover, and also (3) I suffer from an additional major illness, then I do not want to be a burden on my family, but would want to receive palliative care until I die.

          One of my grandmothers and also my husband’s mother both lived in aged care facilities (nursing homes) for more than twelve months following their strokes. They were unconscious, and no one ever thought they’d recover. That’s the sort of scenario that I want to prevent.

          Now I’ve written my wishes I feel good about it, quite liberated.

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