Still dying badly

Another cancer patient - this time a family member, also terminally ill -scared to accept help because it would signify he is 'going downhill'. Living alone, pain from cancer in bones, surrounded by accumulated domestic chaos - frightened and in denial - precious last days could be enhanced if effective counselling was available as routine, to enable person to acknowledge his situation and set support in motion. Add to this the option for assisted suicide and watch fear of dying evaporate for many.

So sorry to hear that, it sounds she was in a lot of pain in her last days, I pray that she is comfortable and out of pain now.
------Original Message------
From: Dignity Champions Discussion Forum
To: [log in to view email address]
Subject: [Dignity Champions Discussion Forum] - Still dying badly
Sent: 8 Oct 2012 11:00 AM

Message sent by Mitzi Blennerhassett.

My friend died yesterday. A protracted death, preceded by a stroke.
Both cancer patients, we had discussed such a possibility. My friend was in favour of assisted dying. Instead she emailed her last message to me - much was incomprehensible, but this was not:
'Wataway to die. Mute and incapable.'

Her husband rang with the news this morning, 'She suffered terribly...', his voice breaking.

She should not have suffered terribly.
t does not have to be like this. When will it change?

Thanks. Yes, she is out of pain - because she is dead. Death should not
be preceded by unrelieved suffering. There is something wrong with
health 'care' when relatives and friends want the patient to live - but
necessarily feel glad that someone has died because that person's
suffering has ended at last.

im sorry to hear your friend died in pain. even in this day of medical miracles we still struggle with pain management, if people have capacity to realise what awaits them... should they have the choice to leave this world in their own way? personally after seeing my mum die an awful death i think much improvement is needed in this area

I am very sorry that your friend died in pain and that anyone should have to die in such an undignified way. I have spent most of my career in palliative care and it need not be like this.

Pain management is not very complicated if we listen carefully and observe our patients. From a careful and often repeated assessment it is straightforward to select from a range of pain relieving medications, administer them regularly and compassionately and follow up to ensure they have been succcessful in relieving pain.

In addition we must use all non-pharmacological methods at our disposal to enhance the relief of pain and suffering. We must never dessert the dying.

Often where we go wrong is in our fear of medications and our reluctance to stand up for our patients. We must never give up. We owe it to those we care for.

Awful deaths leave long and nasty lingering memories in the patient's loved ones.

Where possible, suffering should be removed from the dying process, if the patient consents. And I'm not talking about assisted suicide, I'm talking about things like pain relief and sedation.

Richard Gamlin

Re your:
'Often where we go wrong is in our fear of medications and our reluctance to stand up for our patients.'

I am engaged in a long-running discussion of End-of-Life Care behaviour, and I am firmly of the opinion that a major problem is uncertainty among clinical professionals about the law around death, and about the meaning of section 4 of the Mental Capacity Act (the bit covering best interests decision making).

Until this area is better explained to clinicians, and better grasped by clinicians, problems will remain, in my opinion.

Hi Mike

I am not quite sure what you mean when you say,

"I am firmly of the opinion that a major problem is uncertainty among clinical professionals about the law around death, and about the meaning of section 4 of the Mental Capacity Act (the bit covering best interests decision making)."

This is quite a complex issue in some ways but in others quite clear and straightforward. It is important, I believe, that all who care for people with advancing illness allow, encourage and support them to make decisions about their future, if they wish to.

Decisions about the future, including choosing not to receive various forms of treatment must be made while the person still has mental capacity. If a person no longer has mental capacity they cannot make decisions about their future. Having said that I have really oversimplified things when in fact a person may loose capacity for a while and then it may return and we must never assume lack of capacity.

I believe many clinicians of all grades understand this but some find it difficult to approach the "patient" to give them the opportunity to talk for fear of upsetting them.

Looking forward to hearing from you and widening our discussion Mike

Best Wishes

Richard

Hi Mike

I am not sure that it is possible to "remove" suffering from the dying.

I think if I were dying, my pain could, I hope, be well controlled with medications and good care, (see my earlier post). I think, my suffering would certainly be reduced by effective pain management but I would still suffer. I would be very sad about my shortened future on this earth, saying goodbye to loved ones and friends and uncertainty about my dying. Heavy sedation would render me oblivious to suffering but also to my fond and/or tearful goodbyes.

A little sedation may be effective but there again I have never yet been in such a situation.

In the first hospice I volunteered in and later worked in I remember to posters which oftern guide me

"Hospice, A Safe Place to Suffer"

"To cure, Sometimes
To relieve often
To Comfort always".

I hasten to add that a hospice building or a specialist palliative care service is not required to try and achieve the above. We need those who care to truly get alongside the dying.

Best Wishes

Richard

Hi Richard,

I have not got the time at the moment, but I will get back to you on this later - and my concern is for EoL patients who are in their own homes, primarily.

It is complicated.

Hi Richard,

It will make things easier, if you go to the piece I posted in the Discussion Forums piece I posted under the title 'The Surveys I made of Dignity in Care Champions' and download the PDF file I attached.

Using the page as counted by Acrobat Reader, I would direct you to 'Father & Son' on page 5/6 and also 'Grandfather' on page 9.

There is a little analysis included, where I discuss the answers I received for that survey: of particular interest, are the answers to Q1, and nurse no 3's answer to Q2.

The basic problem with Q1, and the answers to Q1, is that doctors know that patients can simply refuse any offered treatment, but current CPR/VoD protocols IMPLY 'that the GP makes the decisions'. That leaves a problem, with this question:

'What is the difference between a patient saying to his GP "If I arrest from now on, I'm forbidding CPR" and the patient saying to a live-with relative "If you think I have stopped breathing, do not call anyone and just let me die in peace" ?'

The problem with Grandfather, is that he wishes to refuse CPR for a 'sudden' death - nobody will tell Grqndfather, what he needs to write on an Advance Decision, in order that if paramedics are called to check he has arrested, they would not then attempt CPR. So Grandfather, and Grandmother, have got huge problems !

Grandfather is also discussed in the PDF from page 29 where I explained to Sandra, the Practice Manager, the significance of the question (and Sandra did not get back to me, after I had explained that - I often find that after I have explained 'the complexities', people who are not consultants tend to not get back to me !: but usually, a live-with relative will be interacting with a typical front-line worker, not with an ethics expert, so I need to understand what typical clinicians 'would do').

There is also a very brief comment at the bottom of page 30, about the 'suffering as distinct from expected to die imminently' issue.

At the moment, many southern and central SHAs believe 'A valid and applicable Advance Decision refusing CPR is legally binding, but a verbal refusal of CPR is not legally binding' while at the same time the NHS North East DNACPR Form (v15 3 Feb 12) lists 5 justifications for DNACPR, at least one of which must be ticked of, and the 2nd and 3rd reasons are:

CPR could succeed, but the individual with capacity for deciding about CPR is refusing consent

CPR could succeed but the individual, who now does not have capacity for deciding about CPR, has a valid and applicable ADRT or court order refusing CPR

There is a subtlety here, that those southern and central regions seem to have not grasped: a properly expressed and understood verbal refusal of CPR MADE DIRECTLY to the clinician who might subsequently have attempted CPR, is MORE legally-binding on him, than had he read an Advance Decision he had NOT BEEN ABLE TO DISCUSS with the patient (in other words, the North east is right, many other regions are wrong).

The same North East DNACPR form also has this on it:

'In case of serious doubt or disagreement further input should be sought from an IMCA, local Clinical Ethics Advisory Group or, if necessary, the courts.'

Well, a paramedic summoned to a person in arrest, cannot do that if he is presented with an ADRT, can he: nor can a nurse, etc, in a situation when an immediate course of action, or non-action, is called for.

I think there might be some interesting points in a different downloadable file, prepared for Ambulance Services, but I'll need to look it through before pointing (I'm typing this at home, and at home is offline: I email from a public library, so I'll need to download the file and check exactly what I wrote, before pointing at anything particularly relevant in it),

Best wishes, Mike

PS Re your 'I am not sure that it is possible to "remove" suffering from the dying.'

I had a friend who died delirious in pain, screaming out, clearly only aware of the pain and nothing else, for about his final 2 weeks - I'm all in favour of deep permanent sedation, if other pain releif is judged inadequate by the patient, AND PROVIDED THE PATIENT REQUESTED IT.

But my 'technical issue', is that a patient will make his decisions on his perception of his life (what he 'feels') and this can be very different from 'his death is 'expected'' (using 'expected' in the way Verification of Death protocols use 'expected death'). You cannot 'measure' the patient's perceptions, you can only ask and accept the answers - this means you cannot rely on 'objective measurements of the clinical situation' when 'patient choice' is the issue, or when pain relief is the issue.

I'm looking forward to your getting back to me, if you care to, on any of the issues I raise in that PDF, yours Mike

Richard,

I've had time to briefly scan through it, and there is another file you can download from my discussion under the title 'Is speaking awkarness to authority a role for Champions ?' The typo is all my own work !

I would in particular direct you to the thought experiment on pages 7 and 8, pages 11-13 and pages 15 to 19 (those being pages extracted from other pieces I have written up, and which I 'tacked on' to the piece I sent to ASs),

All the best, Mike

Richard Gamlin - I agree with what you are saying! I love your opinions. I an currently a student nurse and am interesting in hopefully working as a nurse in a hospice or doing community visits. I find it so upsetting on the wards when a person is dying and none of the nurses will sit with them! Even to just sit and stroke their hair or hold their hand. I feel that they deserve at least that if there family are unable to come! The problem is that as a society death is kept hush hush and no one wants to talk about it! When in fact, it is a natural process that we should talk more openly about.

Hi Daniella,

As you say, the problem is nobody likes talking about the 'death itself'. Before or after - this makes dying with dignity and patient control, awfully difficult, and it often leaves very bad memories for the bereaved as well.

If you look at the file I attached to my 'The Surveys I made' one (elsewhere in this discussion forum) then the third survey it covers was about a suggestion the President of the RCGP made about CPR, and one of the e-mails I got in there was this:

Hi Mike

Thanks for these. I think my final comment of the population not being open and able to talk about EoLC/CRP is the underlying issue.

We as a group have lost the plot - death will occur for us all.

However is the process of death and what we would like to occur during and following death that needs to be discussed.

The End of Life strategy encourages HCP's to complete an end of life care plan but in fact Nurses are often guilty and feel unable to complete them and so not do them.
They quote that they feel unprepared to do these that they have difficulty in identifying the stages associated with the end of life and they themselves struggle with the whole issue of talking about death.

As I say to friends the Victorians talked all the time about death and mourned very outwardly but they did not talk about sex. Today we talk insistently about sex and nothing about death, people will cross the road syndrome occurs and the medical professions have for many years told people they can cure them. It's not really surprising that people demand treatment, surgery, expensive medicine and then CPR.

When you think it's only about 40 years ago that CPR became a common place procedure, we have to accept that it only works and restores normal life in a very small % of cases. There needs to be open discussion about the cases that would not benefit like in terminal cancer, dementia, large CVA, and others and that CPR would NOT be an option. Who would lead this? I'm not sure and again it rules out emergency or home care.

Open discussion is the key

Regards
Judith
Judith G MSc RGN CSP Manager
St John Ambulance

Heyah Mike,

Yes if the issue isn't discussed it makes the bereavement process harder and relatives don't understand then.

How do I look at your file and surveys? Its early days being a dignity champion.

Oh, just found them. I'll have a look!

I agree with the CPR comments. Have you read Jennifer Worth - In the midst of life? It is a very good book. Started my interest in end of life care. It is so difficult to approach relatives about not resuscitating because we have been brought up to know 'doctors make things better' so refusing to treat is almost alien!

Thank you for your speedy reply!
Dannie (:

Hi Daniella,

I have not read Jennifer Worth: actually I tend to only read guidance from GMC, BMA, RCN etc, and local-level policy documents {then send e-mails to the authors, quite often} - my issues are complicated by 'nobody actually seems to talk about the dying bit', but get much deeper into legal issues (see the post I made above at 22/10/12 13:55).

There are also serious issues around 'perspective' (that actually means that different people can read the same bit of guidance, and interpret its meaning very differently - in fact professionals project their training onto what they read, so if their training is poor you get a vicous cycle) and also what I can only really describe as 'back-covering by uncertain or confused professionals'.

It all gets very complicated, indeed, but do please let me know if you are surprised by anything in that Survey collation (especially if you are a HCP professional - I am not, and got involved in this debate when my mum died a few years ago, but my contacts list is now quite extensive),

Regards, Mike

PS Would you care to make a comment in my 'Good Death Theory' one (also in this forum section) if you have an opinion about that ?

PPS Thinking too much about EoL, might be rather derpressing - I'm not sure, because the actions of 999 and then my local PCT made me become very depressed, and in my case trying to improve EoL behaviour was part of the cure, but most people seem to shy away from such discussions (this is too morbid/too personally upsetting).

Heyah Mike,

Jennifer Worth is a very good writer; she is a former nurse and has referenced all her books. Have a read! Yes I read your pose above 22.10.12 13:55.

I can't really say anything about professionals interpreting the meaning differently? Where all human I guess and our feelings can affect what we say and do! It's very difficult to be a health care profession and these days we are expected to remain almost emotionless!

I'll have a read of your 'Good death theory' I have glanced at it and didn't want to comment because I don't really agree with it...

I don't find thinking about EoL depressing at all. I love the subject and love helping people through that process. Many people find it a difficult topic and for that I sympathise however this is why I want to go into EoL because it is so important - Death comes to all!

Hi Dannie,

If you disagree with me about 'Good Death Theory' being an inappropriate label, then plese DO post why - I need to understand where people have different views !

I'm not sure if the file will atatch, but re the 'professionals and lay see things diferently' issue, I pointed to a few instances of that in a pdf I e-mailed to a group who are discussing this a couple of days ago - I think that people 'understanding everything in the context of their own existing belief set' seriously impedes both change and genuine co-operative behaviour (but I need more evidence to check that out),

Best wishes, Mike

Heyah Mike,

I've replied but obviously to the appropriate discussion section.

Nope the file says 'Files awaiting approval'

Dannie.

Dannie,

Dignity seem to have approved the file I attached above overnight ('I am not sure if ....') which is an improveemnt on the 2 months it took for the Surveys one to get approved !

If you look near the end of it, you will see an email from a nurse who is also a senior lecturer at a university, and who has a law qualification (not a lawyer, however) and teaches the legal bits of her university's nursing courses - it is relevant to how the 999 Services, etc, should behave (as opposed to how they do behave) and it connects to your reply that you put in the other one,

Cheers, Mike

PS Sorry about my awful typing when I don't have the online time to proof-read !

PPS Do you also visit/use the Nursing Times website ? (www.nursingtimes.net).

Hi Dannie,

Re your 08/12/12 12:21 comment.

Your 'you are either for CPR or you are not' comment is interesting, because according to me a person can forbid future resuscitation by writing on an advance Decision 'I refuse CPR' without giving any 'circumstances' (or any 'reasons'). However, many clinicians and much clinically-authored ADRT guidance seems to believe that you must also state 'circumstances' (and section 25(4)(b) of the MCA makes it very difficult to use a clinical qualifying circumstance, in theory {because of the wording of the Act}).

However, what I call a clinical DNACPR - a DNACPR based on CPR will not be offered because it is considered that attempted CPR would definitely fail - does indeed seem to be a simple 'yes/no'.

As for 'sudden' arrests, firstly you have to be clear what we mean by 'sudden' - I mean an arrest when the death would not be 'formally expected', using as the definition of 'formally expected' that the GP has already 'effectively promised to certify the death' (which is equivalent to saying that local policy might allow people like trained nurses to verify such a death and arrange for the body to be removed, if the GP isn't able to attend). Using that terminology, there are lots of 'sudden arrests' and such arrests are far from uncommon, especially in very elderly people - also, some people who things such as 'potentially unstable hearts' that might lead to an arrest at almost any time (this is the classic 'an ongoing and constant low-but-significant risk of a life-threatening incident/arrest' situation, and it is abysmally handled for EoL patients who are at home, at the moment).

One example, is that a cousin of mine was at the post-funeral get together after a friend had died, everyone was drinking tea and to quote my cousin 'the bereaved husband just sat down and died'.

An East Midlands nurse who is fairly senior in their EoL 'hierarchy', told me when we talked on the phone of an elderly relative who was visiting and died during the night, to be found dead in the morning - this was also a 'sudden death'.

As for

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.

I'm interested in where that understanding of the law comes from ? There are two legal issues:

1) are the relatives legally obliged to call 999 ?

2) if they do call 999, are the paramedics legally required to attempt CPR, or are they legally required to listen to what the relatives tell them about the father's wishes, as expressed to the relatives who called 999 ?

It is true that at present 999 paramedics are almost certain to attempt CPR if called in that situation, and that then puts more emphasis on question 1.

Hello Mike,

Ahh okay I'll have a read of the documents later. Gonna do some Christmas decorating!

Don't worry about your typing. I'm just as bad :P I did visit and was subscribed to the nursing times but it's so expensive and I didn't get any benefits from my membership so I am now subscribed to the RCN.

My belief with CPR was that there had to be circumstances as to why we weren't going to resuscitate otherwise your just letting someone die! And in eyes of the law you can get done for man slaughter...

It is not that CPR is a definite fail, it is in place to prevent the person from suffering, there in their last days or whatever.

The relatives are obliged to call 999. However, if it was my dad and he specifically asked not to be resuscitated I'd be tempted to leave him a good ½ hour before calling 999 knowing that he wouldn't come round then and I have given him his last wish. But that wouldn't be right within the law. Very difficult situation to be in.

The paramedics are legally required to attempt CPR. They can legally listen to the relatives but without any written evidence the rule of attempting CPR over rules I'm afraid.

Dannie (:

09/12/12
12:51 Re: Still dying badly

Daniella Pires

Hi Dannie,

It is indeed what is legally required, that I'm discussing with people. It isn't necessarily true, that the relatives are legally obliged to attempt CPR - nor is it necessarily true that paramedics are legally required to attempt CPR. But exactly what is legally correct, is disputed.

Nursing Times online allows you to register (as opposed to subscribe) for free, and once registered you can read/post in some, but not all, of the articles/discussions - I'm not a subscriber, but I am registered with NT (basically, they want an e-mail address from you).

I think your comment about manslaughter isn't correct - there is no law in england that requires a layman to summon assistance for another person who is in distress (unless the witness caused the injury), and that means only the Mental Capacity Act applies: the MCA itself does not make it clear that a lay relative cannot make a section 4 best interests decision about treatment, but the Code of Practice tries to impose that (truly odd, because the Act excludes lay relatives from being subject to the Code). However, I would wish a lot of luck, to anyone who attempts to explain this to the police !

Further to my previous post, a few days ago I sent something to a doctor I had heard on radio 4 recently, and the doctor initially got back to me with an e-mail including the following comment (very preliminary, and I hope we will be continuing this discussion in the New Year):

'Very briefly though, having scanned your attachment and your email, a verbal competent decision to refuse treatment will always be more valid than an ADRT which only comes to play in the context of impaired capacity - although I guess as you say, timing could get complicated. The interesting issue is the validity of conversations within the family compared to those with healthcare professionals - and this is something of interest to you and me!

If informal carers are really the new healthcare professionals, to support the dying at home agenda, then we need to trust family members, have confidence in their caring and communication skills and see them as co-partners in the team as you suggest - I think Canada is way ahead in their thinking. In the UK we are more mistrustful of motivation and sadly this leads to increased suffering.'

What I had suggested, about the position of relatives (I had previously mentioned a problem with ADRTs), was:

I also have an issue with the guidance for EoL at home, which stresses 'what has been recorded and has been written down by the GP' as paramount, and the primacy of the MDT concept - I see the situation as hinging on the greater basic understanding of those people the patient can regularly talk to than of anyone else: so I want the MDT concept to be replaced by a Core Care Team of GP, live-with relatives and regularly-attending DNs (because the patient should be most easily able to explain his choices to these people, irrespective of any clinical qualifications). I also have a long-standing, and probably 'understandable' disagreement with Tessa Ing, Head of EoLC at the DH, about whether guidance for EoL at home (where the communication chain and potential speed of events is very complex) should be based on 'flowcharts and rules' (Tessa likes flowcharts in particular) or an elaboration of fundamental principles (my preference).

My fundamental issue, is over the role (I claim 'active', guidance seems to imply 'merely observer') of live-with relatives, and the law re relatives (either relatives are 'inside' the MCA, in which case section 4 of the Act must apply to relatives - so a relative should be able to fall onto section 4(9) the same as a clinician could).

Merry Christmas everyone, and Best Wishes for 2013,

Mike