Posted by: Lisa Hill | March 25, 2018

Letting Go, how to plan for a good death, by Dr Charlie Corke #BookReview

I almost didn’t borrow this book, and I almost didn’t read it.  It wasn’t until my library warned me that it was due back in two days (i.e. tomorrow) that I picked up Letting Go  ‘for a quick browse’ and then read it all, cover to cover.  I am exactly like the people Dr Corke, a leading intensive care specialist, describes.  In the aftermath of my parents’ deaths, I was very conscious of the need to plan for my own.   I’d read a couple of books about it, but I now didn’t want to think about it any more…

My first impression of Letting Go was that it was rather like A Good Life to the End, by Ken Hillman: both explain that more and more elderly patients end up in intensive care and die in hospital after receiving treatment that prolongs life in an inappropriate way.  Both give short examples of scenarios that have occurred and how the patient’s wishes were, or weren’t implemented.  But Dr Corke unpacks the problems with greater clarity, and he hones in on the way that families, in extremis, find the emotional pressure very difficult to deal with.

In the chapter ‘Why Everyone Feels They Have to Save You’ he specifically tackles the scenario of the ‘broken hip’ for a frail, elderly person.  (This was the one that worried me most, when my father was alive).

Things get more difficult when the illness and treatment are not seen as life threatening.  Doctors find it particularly difficult when patients refuse (or their substitute declines on their behalf) a ‘simple’ treatment that the doctor believes is likely to work.

[…]

Hip fractures often spark a train of events that ends in death for frail, elderly patients (about half dying within one year of the fall).  Many of us know someone for whom a hip fracture was the ‘beginning of the end’. But fractures are not inevitably lethal, and death doesn’t happen quickly.  It would be unusual for us to consider someone with a fractured hip to be in the terminal phase of a terminal  illness. (p.45)

Corke goes on to explain that early surgical treatment saves lives, and that it’s considered poor practice to delay surgery or not to surgically fix the fracture. He explains that there are two alternatives to not ‘pinning’ the fracture: conservative treatment with many weeks of traction in bed while the fracture heals, or palliative care, that is, powerful pain relief to overcome the very severe pain, which soon causes pneumonia and eventual painless death.  Conservative treatment involves turning the patient to prevent bed sores and since pain relief has to be limited in order not to impair consciousness, movement or coughing, this constant turning is excruciating.

So, reading this, I can see that the humane choice is to palliate or to operate, with all the risks associated with surgery for elderly patients and – in the case of patients with dementia or Alzheimer’s – confusion, distress and probably uncooperative behaviour which would inhibit a good recovery.  I did not know any of this at the time I might have had to make a decision about what to do, and I might not have had much time to make a decision about it.

One of Dr Corke’s anecdotes made me angry.  A family had refused surgery for a severely demented relative and had requested palliation, but the doctor had not given her adequate pain relief ‘in case it caused complications’ and the poor lady had screamed in agony every time she was turned in the six weeks it took her to die.  This doctor thought this proved that the family should have consented to surgery.

That doctor would have been sacked by me the first time I heard a scream.

Another aspect that is clearly explained in this book is the problem of emotional pressure.  In the chapter called ‘What about my wishes?’ Dr Corke cites research that shows that vague statements about what’s wanted in certain circumstances are singularly unhelpful for families trying to decide what to do.

Wanting to be saved is easy.  ‘To do whatever is required to save’ is what everyone wants to do for you, needs to do and is expected to do.  It’s what our medical system is designed to do.  It’s the default.  It’s what you get.

When we want to set limits, it’s more difficult.  The system is so intent and so comfortable ‘to do’ that it requires great confidence to convince everyone that it’s OK not to.

Because doctors are so influential, and serious disease and death are so scary, wishes have to be very clear and very convincing to have any chance of having an effect.  The key is to convey confidence. (p.55)

Dr Corke’s research with ordinary people showed that even when there was a blunt ‘No CPR’ in writing, 15% of people ignored it because they didn’t know enough about the person or their wishes to be confident.  Even when there was a clear statement of intent such as ‘I have had a good life and am wearing out.  I accept that I am going to die and want to get it over with.  I do not want anyone to bring me back once I go’, and even when they added an appeal for wishes to be respected including an appeal to love, the research found that they could not get 100% of the research subjects not to resuscitate, and only 95% respected the expressed wishes.

The human reality is that…

Treating doctors, or concerned family, commonly ignore wishes in a crisis (often because they’re unaware of their existence).  Where wishes do get considered, they often get ignored in the pressure of the situation (and as we will see later, many doctors think people actually want them to overrule expressed wishes in a crisis). (p.58)

Other anecdotes show that once an ambulance is called, that it can sometimes take great courage and forcefulness to countermand the ‘do everything to save’ philosophy in hospitals.

To stop wishes being overruled (‘in your best interest’), it is advisable to state a desire, in the plan, that wishes not be overruled by a doctor.

The same advice applies to family decision-making.  [..] It is important to lock in your family to respecting your wishes.  Telling them they can demonstrate their love by respecting your wishes can be an effective strategy.  (p.145)

And even then…

No wonder some elderly people take matters into their own hands!  Most of us are quite clear about what we want, but fear not being able to get it:

The things that contribute to a good death have been the subject of quite extensive research and discussion.  There seem to be some common themes, which include the following: being at home (or as close to this sort of environment as is practically possible); dying reasonably quickly without pain or suffering; having family present, and having the opportunity to say goodbye; dealing with unfinished emotional business (e.g. saying sorry, and hearing others say sorry); and leaving affairs in good order.  Other themes involved more personal and poetic sorts of wishes: to be in a favourite place, to have a particular person present, to have particular music playing – things like that.

Modern medicine, with its institutions and technology, regularly orchestrates a death that violates all of these aspirations.  (p.101)

So, yes, this is an uncomfortable subject, but the stress on people giving their loved ones unambiguous ‘permission to let them go’ makes this the best, most honest and straightforward book I’ve read about it so far.  There’s also advice on how to talk with other family members who are focussed on their own needs rather than the patient’s, and a chapter about religious views and legal issues which is interesting.

There’s an online aid called MyValues to sorting out your own values to guide your decision-making here.

Dr Corke was featured on Background Briefing at RN but the new policy of destroying the ABC archives means it’s no longer available.

Author: Dr Charlie Corke
Title: Letting Go, how to plan for a good death
Publisher: Scribe Publications, 2018
ISBN: 9781925322705
Source: Kingston Library

Available from Fishpond Letting Go: How to plan for a good death or direct from Scribe where it is also available as an eBook

 


Responses

  1. Great review of what seems to be a very important book. My mother, sister and I have had recent discussions on the subject and seem to have resolved nothing, having gone round in circles a number of times, so I will send them a link and perhaps we can continue to the conversation!

    • Well, not suggesting that your family is, not at all, but the book says that it’s important that the most dysfunctional of families should have the discussions beforehand, because the temptation to leave them out of the loop because they might be difficult just defers the problem. If you can get hold of the book and read the bit about how values impact on the discussions, that might help…

      • I had a little giggle because I tend to think all families are a little dysfunctional in one way or another. Mine is certainly no exception! But seriously, yes, I’ve started the conversation again which I think I recall trying to get started after another book review you did some time ago. I am being more persistent this time.

        • LOL Well yes they are but no they’re not… in the sense that if we’re all a bit odd, it must be normal to be odd, right?

  2. I’m sure I am like the great majority in wanting to go as quickly as possible once I am no.longer active. Dad went straight from active to severe stroke. The ‘right’ treatment was to get him up and about but he hated being forced to walk and would shout and shout (no dementia, just unable to speak). When he finally got pneumonia and mum asked him did he want treatment he shook his head very vigorously! All of which reminds me that despite my best intentions I haven’t written a living will or given the kids conditional power of attorney.

    • It’s not easy to do. My lawyer has drawn up the docs, and I’ve paid his bill, but I haven’t been down to sign them yet!

  3. Great review Lisa – I’ve just finished reading the book because a friend lent it to me and wanted my opinion. I was going to write a review but don’t need to now:) I agree with you about how well he explains various options and stresses over and over again the importance of having discussions with family and friends so that your wishes are clear. I updated and fixed up the legal side of things recently and am very comfortable my girls will honour my wishes – they faced the questioning about ‘no resuscitation’ decision after one of my cancer ops went awry but stuck to their guns. Thankfully I pulled through but once you get on the medical roundabout you may need to advocate strongly for your options to be honoured and it’s important everyone is clear what they are and will defend them. The Victorian Health Issues Centre has done a lot of raising awareness of Advanced Planning and their website has great information.

    • Thanks, Mairi, how brave your daughters are, you must be so proud of them.
      I didn’t know about the Health Health Issues Centre, I’ll check them out.

  4. This is familiar territory. My husband — 91 and already with Parkinson’s — broke his hip. We had the surgery and I would do it again because of the extreme pain he was in. He made a recovery of sorts, but began a gradual deterioration which escalated near the end and was dead in six months. He was comfortable and had some pleasure in life until about 6 weeks before the end when he had to go into nursing care. Those last weeks were not devoted to “doing anything” but providing gentle maintenance. His death was peaceful and family was with him then. Local Hospice workers were very helpful. All of that said, it was extremely important that he had a living will with a do-not-resuscitate order executed some years before, when he was not demented. One family member loudly denied he was dying and tried to countermand the order but she could not. Sign those papers!

    • Thanks for sharing this, Nancy. It’s helpful to learn from those who’ve had experiences in this situation.
      One of the aspects commented on in this book is that there can be long-lasting fallout when family members disagree and how having the paperwork done can help to prevent that, I’ll take your advice.

  5. I’ve seen so many instances of people having surgery in hopeless situations or being kept alive with terminal diseases. Very very sad. I knew of one woman who’d been in a vegetative state for years and breast cancer was discovered. Drs wanted to operate.
    Yes getting those papers drawn up, signed and discussed is important and some of us live in right–to-die states too.
    I used to consider moving to a right to-die-state but now California joined the list. And about time.

    • Yes, about time indeed. We here in Victoria are the first to legislate for Voluntary Assisted Dying, but the provisions are very restrictive, which they probably had to be to get it through parliament. The legislation excludes the problem of people wanting to have a dignified ending to their old age altogether…

      • That’s a bit sticky. I’ve seen adult children push their elderly parents around (and into carehomes) by bullying. I’ve seen elderly, heartbroken, just give up and roll over to their middle-aged childrens’ demands.

  6. It’s not the sort of thing we want to thing about but having lost some people recently I think we really need to not only get rid of the taboo we have about talking about death, but we also need to face facts. Everyone I know wants to go quickly when their time comes and not linger. I definitely need to write something down for my family…

    • It’s strange, isn’t it, that parliaments are so far behind public opinion on this issue…

      • We have had the talk with my parents, and did have to put it in action when Dad had major surgery when he was 91. His first post surgery night was rough, so the doctor went through very specifically what they could and couldn’t do – what we meant by no major interventions. He was very specific down to antibiotics and feeding. Dad is tough though and survived. But we’d had the discussion long before that, and with that experience also under our belts I know what he (and Mum) want. They wrote their first living will/advanced care directive (or whatever they are called now) over 20 years ago.

        We redid our Powers of Attorney in 2016, giving the Power to each other, but in our absence to the kids. This also includes the power to make medical decisions. They’ve signed it. SO it’s all done, but we haven’t had the detailed talk in fact with them about what we want, on the assumption that we are each other’s first call. If we were both in a serious accident, I trust that they’d make the right decision but we do need to make time to talk about it in more detail!

        • From my experience it’s easier to talk about with The Spouse (up to a point) than The Offspring.
          I am much tougher than either of them about what interventions I don’t want!

          • I think as you age your mind focuses more but that’s clearly a generalisation. I know about my daughter a bit more because she talked a little before she lived overseas but that was more about organ donation than what to do before it got to that point. I think Mr Gums is tougher than I am on what he wants but in the end if I were non compus I’d trust him to make the sensible decision.

            • I think it’s only human really: I hated it when my parents wanted to talk about their Wills. My mind went straight to denial…

              • Me too with my parents should but you have to know don’t you.

  7. That’s probably not an easy book to read but it is about a topic that needs to be discussed and not swept under the carpet.

    I’m younger than you, my years with ageing parents are ahead of me and I’m really not looking forward to it.

    • There is a sense that along with the wonderful advances made in medicine, that some of it has got out of hand.
      Is there much discussion about this in France?

      • Is there discussion about this here? Yes but not enough. The current minister of Health says that our health system isn’t organised properly to face an ageing population.
        There’s that and for the rest, I think most of us would like to ignore the matter.

        • Yeah, it’s crazy isn’t it?!

  8. An “Advance Health Directive” is almost mandatory in the US now – (almost) so here’s a site with a bunch of examples by state. My mom and I have both done ours. I am my mom’s executor and my son will do the honors for me.

    https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/

    • Well, given the cost of health care in the US, you sure wouldn’t want to be paying for health care you didn’t want!

      • And neither of us wants to be jut living on and on like a vegetable.

  9. Important subject to discuss. There’s also a good website with an Advanced Care Plan template from Victoria Health https://www2.health.vic.gov.au/about/publications/formsandtemplates/advance-care-plan-template
    I’ve just filled it in and taken a copy to my GP.

    • Yes, and people in Victoria need to know that the forms have changed since the VAD legislation so it’s best to update if completed prior to last week:)


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