Posted by: Lisa Hill | August 26, 2017

A Good Life to the End, by Ken Hillman

A Good Life to the End has to be one of the most depressing books I’ve read this year, but it’s an important one that faces up to some unpleasant facts.

Although I think it deserves a wider audience, I think the book will have most resonance for those of us confronting the end of life for aged parents, who are having to make decisions for loved ones no longer able to make those decisions for themselves, and who are realising that the same issues apply to us as we ourselves get older.

Professor Ken Hillman is Professor of Intensive Care at the University of New South Wales (SWS Clinical School), and an actively practising clinician in Intensive Care, at Liverpool Hospital.  He’s also the presenter of the TED talk ‘We’re doing dying all wrong’, though I didn’t see that till I Googled his profile for this review.

 

After the uplifting optimism of the Edgars’ Peak, Reinventing Middle Age, it is dispiriting to read the list of impending ailments in chapter 2 of A Good Life to the End.  But what Hillman is saying is that old age has been medicalised so much in the course of our lifetime, that when people experience the inevitable ailments of the old age, these ailments tend to be treated as if there were a cure, often in very expensive intensive care units (ICUs).  It’s not the money, though that’s an issue, it’s that although most people would like to die at home, what happens is that most elderly people will die in hospital instead.  The money would be better spent providing support services so that people can be comfortable at home.

Where ICUs used to be for emergency medical treatment of the young (after car accidents and the like) now apparently they are mostly full of very old patients.  He gives some heart-rending examples of very old people with dementia who have been resuscitated from a cardiac event instead of being gently allowed to die of it.

So Hillman is on a mission to encourage more transparency and honesty around death.  In Chapter 8, ‘Denise’s manifesto’ he works his way through the way we should approach the discussion.  We need to have the conversations that sort out Advanced Care Directives so that we have considered what treatment we would like in certain circumstances and what treatment we would like withheld.  We need to have those conversations with our parents, and also with our children, and we need to record our decisions in writing.  It makes it easier for doctors who are often under pressure to diagnose something other than the ultimately untreatable frailty of old age, and who feel that they have to prescribe something even though it cannot cure the inevitable.

Reading this book was personal for me: my parents have very recently died within eighteen months of each other, my mother-in-law is among the frail elderly, and I have memories of my very ill father-in-law being offered tube-feeding when it was entirely inappropriate.  I’m not going to share personal stories except to say that it really does make the situation easier when treatment options have been thought through and decided on, in advance.  Because it’s not easy to think clearly in extremis, not when it’s someone that you love.

As far as the Big Picture is concerned, these are Hillman’s concluding words:

The future is about redesigning our health system in a radical way.  Most of those requiring health care are elderly.  Much of the conventional treatment they currently receive is inappropriate, futile and not consistent with either the patient’s wishes or their carer’s. Moreover, this treatment is the major contributor to the unsustainable cost of our health system.

So let’s ask the elderly what they want, and just as importantly, what they don’t want, then design a caring and supportive system around their needs.  (p.295)

Every family needs to have someone who’s read this book and can get the conversation started…

Author: Ken Hillman
Title: A Good Life to the End
Publisher: Allen & Unwin, 017
ISBN: 9781760294816
Review copy courtesy of Allen & Unwin

https://pursuit.unimelb.edu.au/articles/it-s-a-fact-women-get-better-with-age?utm_source=facebook.com&utm_medium=social&utm_content=story


Responses

  1. I’m not going to read this book as it is way too close to home, having just had my father placed in an aged care facility due to chronic illness and Alzheimers. Suffice to say that we recently had a very positive experience when a senior doctor at Dandenong Hospital recommended that my Dad NOT go through an invasive investigatory procedure as there was little benefit to be had if they found something nasty. We fully supported his position and Dad was able to leave hospital and recover much more quickly than if the procedure had been done. We are very fortunate to have had a conversation with my father prior to the Alzheimers taking over so we knew what his view was in advance for things like this.

    • I found the doctors at Dandenong excellent. Not just good at what they do for the patient, but also at looking after the anxious family.
      The whole business of testing is out of hand IMO. (Wayne Macauley has just written a really thought-provoking book called ‘Some Tests’ on this very issue.). But for elderly people, tests are incredibly stressful, and often absolutely pointless… and in my father’s case, he knew it too.
      But it is hard to be strong about this if those conversations haven’t already taken place…

      • Reminds me also of hearing Lionel Shriver speak years ago about her novel about a woman with cancer and the ‘do everything possible, regardless of cost’ attitude in the US health system. Shriver’s book was based on a personal experience – her friend who lived in the UK had terminal cancer and end-of-life plans and a halt to treatment was implemented early. Shriver realised that had her friend lived in the US, she would have been having surgery and chemo right up until the end, regardless of patient wishes. These things are SO IMPORTANT to talk about.

        • Just last week I was talking to someone – not about this book – but about health generally and she said that her plan was to go to somewhere remote in a country like Thailand where she would be free to enact her own choices. I understand that, but I think it’s hard on family and it may not end in a painfree death. But it’s indicative of the desperation that some people feel about the medical profession being in control instead of the patient.

          • Which is basically what the character in Shriver’s book wants to do (Caribbean). Agree it’s hard on family – all the more reason to have these discussions before they’re pressing.

  2. This sounds a little like Atul Gawande’s Being Mortal which my partner has found very helpful. My mother died when I was a teenager and my father after a very short illness which was a horrible shock but given what I see my friends and my partner going through I understand that both my father and I were very lucky. I think you’re absolutely right about the importance of such books both for ourselves and for those we love.

    • Yes, I read that one too, just when I needed to, if you know what I mean. That chapter about the husband who just would not let his wife go stays with me as an example of how love can be very cruel sometimes.

  3. Oh Lisa, this must have been very harrowing for you. My initial thought was that I didn’t feel strong enough to read it but I have taken your last comment to heart. You managed it and it must have been very distressing for you at this time so, being the reader in my family, I will read it. Thanks for the review.

    • It is hard, but I believe that facing up to grief is the best way to deal with it. When the Ex departed, I had a very large portrait of him on my sitting room wall, right where it could not be avoided. My friends said I should take it down, but I didn’t, not until I could look at it with equanimity. It all helps with the healing process.

      • I seem to have had many losses in my life and think I’ve handled them with stoicism but my mum is in her eighties and whenever I think of losing her, I selfishly try to avoid it . . . still, the quietest corners of my mind push their shadows outward to force me to work through the inevitable. I can see the importance of this book.

        • It is quite crushing to be without both parents, and I’m not sure that there is anything one can to prepare for that.
          But you can prepare to make the last phase of their lives better, though of course it’s not always easy to get them to deal with it either. That’s why I think it’s good to deal with it a long time before it’s on the horizon, when it seems remote and unnecessary….

          • Sage advice indeed and, as I will be staying with my mum in a couple of weeks, I might join her for a glass of wine and hopefully we can talk about it in more detail than we have done previously.

            • *smile* Yes, a relaxing glass of wine is probably a good idea.

  4. Thank you for this review. I heard Ken Hillman on radio today, and thought I’d like to read the book. It’s not an easy topic but I think it’s important to consider. My 102-year-old mother-in-law was well until now but needs to go into care and it’s hard to know what’s best at this stage. Have you read Leah Kaminsky’s ‘We’re All Going to Die’? It’s described as ‘A joyful book about the necessity of celebrating life in the face of death.’

    • Hi Anna, was that interview on Radio National? (I can probably find it on their website if it was).
      Aged Care is such a very hard decision. If I may give advice, check out Arcare: they have a policy of assigning the same nurses to the resident so that (allowing for sick days and weekend rosters) they have the same three people for most of the time, morning, afternoon and evening, and so they are cared for by people who know them well. Much, much better than another aged care chain I won’t name (where my father was in Qld before I brought him down here). My father was at Arcare Keysborough and I could not fault their care of him, and of me. They were wonderful.
      I went to hear Kaminsky at the Williamstown Literary Festival, but I am a bit cross with her, in the media for opposing the euthanasia bill, when it is so very badly needed for people with terminal illness (i.e. not old age).

  5. I am in the same situation as you and many of your commenters. My father died a couple of years ago after being paralyzed by a stroke and mum is in her 80s (though protesting indignantly if I imply she might die any time soon). And it is not so long since my grandmother begged to die worn out from caring for my grandfather with alzheimers. But my concern is me. I know I’m remiss in not having a living will, still I just hope I’m allowed to die as soon as my active life is over.

    • Nice idea, hope, but it’s not good enough. Not these days when they will go on treating you whether you want it or not.
      Download the form from that link or a WA version of it, and then sit down and have a good think about what makes life worth living and what would make it unendurable. Have a look at the frailty scale, http://openheart.bmj.com/content/openhrt/1/1/e000033/F2.large.jpg
      Then at the very least, if you are reluctant to talk about it with the family, go see your doctor with the form filled in. (You have to do it with your doctor here in Victoria so I suppose you do in WA too).

      • Thanks Lisa. I will. The kids know how I feel, let’s just hope they act on it at the time.

        • Keep a copy in your wallet!

        • Sorry to butt in but the kids won’t be able to deny medical treatment if a doctor recommends it without a medical power of attorney appointed (I’ve just been through this with my father). You may already have one in place but if you don’t it saves a lot of hassle in the long term – and they are very simple to put in place.

          • Yes, that’s true. There’s a difference between what you can put in place for yourself and what you can put in place for someone else, and that also depends on whether their capacity to make decisions for themselves has been documented too.
            And at the end of the day, it’s too bad if someone goes ahead anyway (ambos, for example, or some well-meaning bystander doing first-aid CPR). I mean, you could probably sue, but who’s going to do that…
            I think (don’t quote me) you can apply for guardianship if you don’t have a medical PoA but of course that takes time. ,

          • Don’t be sorry, it’s good advice. I should have conditional power of attorneys in place, I keep ‘meaning to’.

  6. Excellent review. I’m not going to rush out and read it but I will be making my husband read it very soon. I’ve been banging on about these issues in my family for years and unfortunately things are coming to a head and decisions will need to be made in the next year or so. It’s a tough time and I think the more info you have (and early, so you can mull over things), the better.

    • As long as someone does!

  7. When in 2011 my elderly father – he was 91 – had his third major surgery in 6 years, there was concern that he wouldn’t survive the first couple of days. Mum and I knew his wishes, so when the doctor approached us about what they could and couldn’t do, we were prepared. However, it was interesting how specific it got, such as whether to give antibiotics or not, whether to feed him or not. I was impressed at the clarity.

    Anyhow, as you know, he survived and is now 97. He’s a tough b****r! Thank goodness. But, both my parents have their Advanced Care Directives.

    • Your parents are legends! Every time I see them on FB, I think how amazing they are:)


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