Does anyone else share my doubts about Good Death Theory ?

You're quiet right there's no such thing as a good death!

Especially to the loved ones of the person who has died. They might think it was a release from pain and discomfort, but it's never good to them as there's always something in life that they wish could have happened.
Having been on both sides, that is personal & professional, I see that there is comfort in calling it a good death, but the reality is there's no such thing.

Hey Mike,

I have read quite a bit on the 'good death theory' and I agree with it. Yes the clinicians can make the death less bad, but in the medical world we call it a good death. A good death defined as a person dying with dignity, respect, without any pain or suffering and with the people they love. Also, with their preferences and wishes met such as if they prefer or wish to die at home.

I can't personally relate to how relatives would feel. But within health professionals we aim for the person to have a good death but we wouldn't necessarily call it 'a good death' to the relatives face. Not a very nice concept?

I don't know if you had a look at this booklet:
http://www.tees.ac.uk/Docs/DocRepo/Research/A%20good%20death%20booklet.pdf

'If a father is apparently fit and healthy, and collapses and dies while playing golf aged 88, then surely those he leaves behind will feel 'that some good life was missed out on' ?

If a father suffers for many years, and by the time he dies death is seen 'as a release', then the death part seems okay - but the years of suffering, are not 'good'.'

These examples are not what we mean by a 'good death'. All death is treated equal; 'a good death' is maintaining good pain relief, comforting the person and making their end days comfortable.

I really don't agree with what you say about clinicians seeing the death as good to clear their conscience. It's not because of that at all.

I can understand what you're saying about it being called a good death, because it doesn't seem morally right. But we're not saying the death itself is good we are trying to prevent discomfort in a person's last days.

Dannie (:

Hi Daniella,

I didn't say it is to clear the conscience of clinicians - what I said is it must be 'easier mentally' to beleive that one is achieving something 'good' as oppsoed to simply preventing something 'even more bad'.

So I find the label inappropriate: good pain relief can be described as good pain relief, etc - I am having a lot of trouble with the labels being attached to things by clinicians/guidance (one example being the inappropriate consequence of calling 'really expected deaths, expected death' in CPr/VoD protocols - this leads to somewhat earlier EoL deaths being described as 'unexpected, and that is clearly wrong when GPs can decide to certify most of those deaths).

' we wouldn't necessarily call it 'a good death' to the relatives face'

Perhaps, if the clinician had put his/her brain into gear - so why call it 'Good Death Theory' at all ? And if the term is in the literature, relatives can find it, can't they ? Why wasn't it called 'Better Death Theory' or something rather less contentious ? In fact, why does it need to have a label at all ? Why does the concept of providing decent pain relief and dignity, etc, need a label ?

I'll follow your link, thanks, Mike

If I knew the answer as to why they call it 'A good death' theory I would tell you. I call it 'a good death' theory because that is using evidence based practice.

Dannie :)

Dannie, there can be an evidence base for the behaviour associated with the label 'Good Death' and I have no doubt that there is such evidence.

I'm looking at a different issue here - is there any evidence about whether the label 'Good Death Theory' is a good and appropriate label: and I think it is at best insensitive, when viewed from the perspective of a typical bereaved person.

Having said that, I suspect that some traumatised bereaved people might 'improve mentally' if they can somehow come to see a 'bad death' as being 'in fact, it was a good death' - I doubt that I could do that myself, because I don't like 'messing with my own brain'.

Regards, Mike

Dannie, there can be an evidence base for the behaviour associated with the label 'Good Death' and I have no doubt that there is such evidence.

I'm looking at a different issue here - is there any evidence about whether the label 'Good Death Theory' is a good and appropriate label: and I think it is at best insensitive, when viewed from the perspective of a typical bereaved person.

Having said that, I suspect that some traumatised bereaved people might 'improve mentally' if they can somehow come to see a 'bad death' as being 'in fact, it was a good death' - I doubt that I could do that myself, because I don't like 'messing with my own brain'.

Regards, Mike

Daniella,

I've looked at the booklet you aimed me at, and it isn't quite 'my issues'.

I am currently involved in a discussion about his Deciding Right stuff with Claud Regnard

http://www.theclinicalnetwork.org/end-of-life-care---the-clinical-network/Decidingright/plusdocument

and that is also NHS North East - the issues are deeper than the 'Good Death' booklet.

An Issue I have with Claud, and indeed with almost the entire NHS establishment at present, stems from a requirement of the Mental Capacity Act that an Advance Decision (ADRT) refusing life-sustaining treatment must be written to be valid (the Act says that).

However, this has been extended to 'A valid and applicable written Advance Decision refusing CPR is legally binding, but a verbal refusal of CPR is not legally binding', and that can't be correct - it hinges on how and when a verbal refusal is made, and whether the written ADRT is read and discussed with the patient (as an aside, clinicians don't seem to necessarily understand what 'applicable' means, either).

This is really easy to see, and hinges on applying a bit of logic (and intentionality) to the Act when one thinks about it - as I sent to Claud this Tuesday:

Going back to my long-standing dispute with most clinical authors about the top two rankings on my DNACPR Justification Hierarchy (my 'verbal refusal comes top' issue), I'll have yet another go !

An EoL patient is visited at home on a Monday by two district nurses (DN1 & DN2). The patient's wife is also present. The patient wants to write an ADRT refusing CPR under certain circumstances, and he explains this to the DNs, and asks them 'How do I word this, so that any clinicians who read it, will understand what I have just explained to you about the circumstances under which I would refuse, or accept, CPR ?'.

The two DNs come up with a form of wording, he writes an ADRT using that form of words, and he gets both the DNs and his wife to witness it.

Two days later on the Wednesday, his GP and two different DNs (DN3 & DN4) are visiting him. Again, his wife is present. He shows them the ADRT and asks the 3 clinicians to tell him 'when you read this, under what circumstances am I refusing or accepting CPR ?'.

These 3 clinicians, come up with an answer that differs from his intended instruction, in some respect - so he explains to these 3 clinicians exactly what he explained to DN1 & DN2, and asks them 'So, how should I alter the wording, in order that clinicians who read my new altered ADRT understand that I am refusing/accepting CPR under the circumstances I have just explained to you in our detailed discussion, bearing in mind that the current wording is obviously inadequate ?'.

The GP, DN3 & DN4 put their heads together and create a new form of words, which they think should lead other clinicians to understand his refusal and its exceptions, as they understand it in the light of their detailed discussion with him. These new words are written on a new ADRT, which he is about to sign, but he suddenly arrests before he has been able to sign it.

QUESTION: we now have:

1) A signed and witnessed ADRT, but the GP, DN3 & DN4 are aware that their 'prima facie interpretation' of its wording, is not what the patient intended its words to indicate to them (despite those words having been formulated by two other clinicians, DN1 & DN2).

2) A new but unsigned ADRT, which has wording on it formulated by the GP, DN3 & DN4, to attempt to convey the understanding of the patient's refusal of CPR which they have just gleaned in a detailed verbal discussion with him.

How on earth, can the apparently valid original ADRT be the instruction re CPR to the GP, DN3 & DN4, when the patient has just explained to them that their interpretation of it was not the instruction he intended it to convey, and when they have just created a form of words intended to convey that instruction (which they do now understand, because of the discussion) to other clinicians on a new/altered ADRT, be the thing that guides their response to his CPA ?

It is obvious, that they must act on their understanding of his refusal - and that was gleaned not from the original ADRT (awaiting replacement or modification) but it exists in their minds (because of the discussion) and is about to be described in their words on the new ADRT for the benefit not of them, but of other possible readers of this new ADRT.

It is much more complicated, than just saying 'we are all trying to allow pain-free and dignified deaths' !

Hey Mike,

Give me a chance to reply, eh?

Right your looking at a different issue. So your issue is whether anyone has looked into whether calling it a 'good death theory' is an appropriate label.

Hmm. To be honest with you I haven't really looked into it. But thinking about it I suppose it can be a bit insensitive to people because obviously death isn't a good thing to begin with. The terminology may mean one thing to me and one thing to another person. It's very difficult to label something, you have got to be so careful.

I'm off out at the moment but I'll reply to your 14.28 comment soon.

Dannie (:.

Hi Dannie,

I always give people a chance to reply - but a surprising number of HCPs seem unwilling to reply to the more complex questions, once they properly understand the issue !

It is indeed the label of 'a Good Death' that bothers me about that one, but it is significant - people are influenced by labels, subtlely, in terms of their 'mindets/thinking'.

Your:

The terminology may mean one thing to me and one thing to another person.

is a huge problem for my main issue (EoL but not-yet-'expected death' patients who are at home and are still metnally capable, and the issues of who makes what decisions, what the role of live-with relatives is, and information recording/dissemination: the basic paradox is that GPs know patients can just refuse offered treatments, so therefore do relatives, and yet the rest of the 'system' seems to want GPs to 'make/record decisions'.

So what happens if your dad says 'I've had enough of this - if I deteriorate, or stop breathing, just let me die in peace and don't call anyone' and then does stop breathing before this has been mentioned/discussed with the GP ?

In answer to your 14.28 comment.

Where is the evidence to say you can use CPR in this scenario and resusitate me in other scenario? My understanding is your either for CPR or not.

The scenario you explained seems a bit unlikely that he just suddenly arrests? It's rare without any build up? And it's very unfortunate that it happened on that occassion but I would believe that because he discussed this with his GP the GP has the power over it to respond how he wished.

I am not a health care professional, I'm a care assistant and a student nurse. I will reply to your replys, I love end of life discussions and I'm so passionate about it. I also find it silly if I weren't to reply like all these other HCP's you tell me about.

If my Dad has said he has had enough and we didn't discuss it with the GP, legally he has to have CPR. And that's just bad luck I'm afraid.

Dannie (:

Dannie,

I wrote this at home (offline) before reading your 12:21 post, which I'll address later - but 'legally he has to have CPR' isn't necessarily true, because the legal issues are several, including 'do the relatives have to call 999 if he seems to have stopped breathing' ? It is, indeed, the interpretation of the Mental Capacity Act, which is being discussed in my debates with people. Thanks for telling me that you are a student nurse, I'll bear that in mind (one problem is not knowing who will read stuff, and therefore it is problematic to assuem what people willa lready have read or be aware of - I like your enthusiasm !).

My 'Thinking Clearly' series of documents, which starts with a 'themed set' (the theme is essentially the 'Grandfather' problem described on page 9 of my compiled surveys pdf, but broken down into 'short chunks') but then moves on to wider issues, isn't really suitable to just tack on to a post on this site (and I have trouble uploading things to this site - I use a computer in a public library for online stuff, and I think the settings are 'clashing').

But it was cobbled together a few weeks ago, after I started discussing Claud Regnard's NE NHS 'Deciding Right' series, and if you would like to have a look at them, then my e-mail address is in the 'Surveys' compilation that I think you have downloaded already (page 4). If you e-mail me I'll send you the Thinking Clearly series as an attachment, and I might also forward to you a couple of interesting e-mail exchanges which are very interesting re EoL 'thinking/behaviour',

Best wishes, Mike

I believe you're missing a valuable spiritual dimension in this discussion.

If I perecive life as a gift, in which I had no control over my the fact of my existence and therefore can expect to have none over my death, and I communicate and share this with my loved ones over a period of time, then I believe that any death can be a good death.

In some ways hopefully this is what we spend the latter parts of our life doing - coming to terms with and preparing for our deaths.

However, it is easy to see a clear contradiction between the medical model of death - desperate attempts to prolong life, continued suffering, end of life in a clinical insitution, hooked up to technology and pumped full of drugs - and a good death, yet it was the medical model which saved my life with surgery at 52.

What seems to be missing quite often these days is compassion, something which you can't bottle up and sell on a degree course, give a certificate for, or learn about on the web. No, compassion is a most natural state yet quite elusive to many.

Processes and procedures, in contrast, dehumanise and often strip individuals of their humanity.

Hello Ian.

I do not really understand your second sentence.

However, I am 100% with you, for your final sentence !

Although I share your doubts about their being a Good Death, there are occasions when someone does dies in comfort and peace, supported by friends, family, Nursing staff and Doctors.
I have indeed had the privilege, to be with many people at the end of their life and have always felt it my duty to ensure that whatever the circumstances everything is done to facilitate this.
Although it is not always straight forward for many reasons health professionals MUST have a conscience and a sense of duty to ensure that every "End of Life " process or death they are involved in is what they would want for themselves or for someone they loved and cherished.
For me being at the side of someone who is dying is as important as being there at a birth.
Nobody enters this world alone, as at birth there is of course at least one other person, a Mother!
I feel most strongly that NO ONE should die alone .

I have seen good and bad deaths with dementia and although the guilt was hard to bear seeing mum go through the pathway - when I saw what my poor uncle went through terrified and screaming with only oramorph for comfort, I absolutely know I did the right thing. Death is part of life - we have lost touch with this truth and ironically we live in an age when it does not have to be a cruelly painful and terrifying ordeal. We are so lucky!

Hi Helen,

I agree that death should no longer be an ordeal in terms of pain, if pain releif is REQUESTED by the patient - however, it isn't clear that all clinical teams will offer the same level of palliative intervention.

Hi Penny,

Did you mean what you (apparently) wrote, here ?:

'Although it is not always straight forward for many reasons health professionals MUST have a conscience and a sense of duty to ensure that every "End of Life " process or death they are involved in is what they would want for themselves or for someone they loved and cherished.'

Surely the HCPs are professionally obliged, to allow the patient to die as the patient wishes to, within the limits of constraints on the treatments that could be offered (and accepted or refused) ? So, surely it isn't 'how I would want to be treated/die', but 'how he/she wants to be treated/die' ?

This type of thing was being discussed on the Nursing Times website, and a senior hospital manager explained how she had to come to terms with how her own father chose to die (my own mother was very 'anti-intervention' when she died, so I understand that position):

'24-Jan-2013 9:14 pm
I am a senior NHS manager, a scientist and a daughter. My dad died a hard death several years ago and we could not have coped without the support and advice from senior nursing staff. He had written a will and done all sorts of process things that meant sorting out his affairs was straightforward. But the way he chose to die was very hard. He refused all support from our family, rarely let us into the house, fought any help I tried to get him like cleaning or meals, never went to his GP and it was only the miraculous skills of our community nursing team that he had any care at all.

I learnt a lot about life and myself and all sorts of things during that time. One of the most profound was something his SpN said to me, which was we all have a choice about how we die. I'm all for women choosing how to deliver their baby or other lifestyle choices we all make, but that had never occurred to me before. I stopped trying to force him to do what made me feel less guilty as a daughter and when he eventually died, we were all with him.

So yes, we are all responsible for our death and relatives matter but people should have choices about how and where they die. Families and careers have to respect that but it is hard, e.g. when he refused an NG tube. A good nursing team made all the difference in the world to us and I use every ounce of my small power in my job to support the profession.'

Hi Helen,

I agree that death should no longer be an ordeal in terms of pain, if pain releif is REQUESTED by the patient - however, it isn't clear that all clinical teams will offer the same level of palliative intervention.

Hi Penny,

Did you mean what you (apparently) wrote, here ?:

'Although it is not always straight forward for many reasons health professionals MUST have a conscience and a sense of duty to ensure that every "End of Life " process or death they are involved in is what they would want for themselves or for someone they loved and cherished.'

Surely the HCPs are professionally obliged, to allow the patient to die as the patient wishes to, within the limits of constraints on the treatments that could be offered (and accepted or refused) ? So, surely it isn't 'how I would want to be treated/die', but 'how he/she wants to be treated/die' ?

This type of thing was being discussed on the Nursing Times website, and a senior hospital manager explained how she had to come to terms with how her own father chose to die (my own mother was very 'anti-intervention' when she died, so I understand that position):

'24-Jan-2013 9:14 pm
I am a senior NHS manager, a scientist and a daughter. My dad died a hard death several years ago and we could not have coped without the support and advice from senior nursing staff. He had written a will and done all sorts of process things that meant sorting out his affairs was straightforward. But the way he chose to die was very hard. He refused all support from our family, rarely let us into the house, fought any help I tried to get him like cleaning or meals, never went to his GP and it was only the miraculous skills of our community nursing team that he had any care at all.

I learnt a lot about life and myself and all sorts of things during that time. One of the most profound was something his SpN said to me, which was we all have a choice about how we die. I'm all for women choosing how to deliver their baby or other lifestyle choices we all make, but that had never occurred to me before. I stopped trying to force him to do what made me feel less guilty as a daughter and when he eventually died, we were all with him.

So yes, we are all responsible for our death and relatives matter but people should have choices about how and where they die. Families and careers have to respect that but it is hard, e.g. when he refused an NG tube. A good nursing team made all the difference in the world to us and I use every ounce of my small power in my job to support the profession.'

What I meant was that everyone should do unto others as they would wish others to do unto them...not that everyone should have the same death ,, but just that all those involved do all they can to support the person that is dying and those close to that person.
I have worked with the dying for many years, and have seen so many staff with attitudes that do not reflect this, and it just saddens and indeed frustrates me that so many people working the caring professions have forgotten or perhaps never learnt the basics.

Hi again Penny,

when you write:

'I have worked with the dying for many years, and have seen so many staff with attitudes that do not reflect this, and it just saddens and indeed frustrates me that so many people working the caring professions have forgotten or perhaps never learnt the basics.'

I've been discussing EoL 'beliefs and behaviours' for several years, notably with the Head of EoL Care at the DH, but also with others (including a nurse who is also a senior lecturer at a university, has a legal qualification, and thinks that most nurses have not got a good grasp of the law around 'death' - and I agree with her {and would probably throw in 'and doctors as well'}).

'A caring attitude' is one thing, but people also need to be interpreting the law (because although people 'like to behave properly', they feel they MUST 'behave legally'), in particular the Mental Capacity Act, correctly: that interpretation is somewhat disputed, but clinicians do not seem to start by reading the Act itself (a consultant admitted to me, recently, that he struggles to make sense of the Act itself). We (this discussion group) are still not entirely sure why various problems that are apparent (such as the current furore over the Liverpool Care Pathway) happen, and personally I think 'why is this happening ?' is always a useful place to start !

If you are a nurse with an interest in EoL care, and you are willing to join in with our e-mail discussions, then I think having a front-line nurse's perspective might be helpful for us: if you are willing to join in, please send an e-mail to me at

[log in to view email address]

Best wishes, Mike