More strangers have died in my arms than family members have died in yours
During a discussion with me on the Nursing Times website, after I had commented that I had been with both of my parents when they died at home, and I had found a housebound cousin dead in his home, a nurse commented:
'More strangers have died in my arms than family members have died in yours'
This raises an interesting question:
Is a professional experience of involvement with the deaths of many patients, fundamentally different from the experience of a relative when a loved-one dies ?
I think it is not only different, but that any attempt to 'extrapolate professional experience to an 'opinion about how relatives 'should react to death'' is dangerously unsound: because to a relative, each death will be a 'one-off' experience, while professionals who are involved in many deaths, will tend to form 'expectations' which are essentially 'averages'. So professionals, especially if a death at home has become 'confused', will tend to 'see' departures from the average of their previous experiences, and often this will be viewed as suspicious - but a relative has only that particular death, combined with his/her own previous personal experience, to 'use'. This is not about the clinical features of the death - I'm talking about 'the feelings and behaviour around the death'.
For example, I am aware that some nurses think that the position of relatives, will be to try to do everything possible to keep their dying loved-one alive: my personal position, is that I would always do what I believed my dying loved one would have wanted me to do. If I knew that my dying loved one wanted to die, I therefore would not support attempted resuscitation if a cardiac arrest had occurred - conversely, if medics believed that CPR 'would be futile' in advance of an arrest, but despite being told this my dying loved one 'wanted 999 to be called, and CPR attempted', then I would call 999 and ask for CPR when an arrest at home occurred.
I myself have one relative, whose position was 'that you should do everything possible to keep people alive, even if the person has forbidden the attempt to keep them alive' - as it happens, that position is illegal under English law, which supports patient self-determination.
I would appreciate feedback, on this 'does death look different for clinicians and for relatives, etc' issue: if you respond, please indicate whether you are a nurse or whatever, to see whether 'group norms' are appearing in responses,
Best wishes, Mike Stone
PS I am posting this on Dignity in Care as a Discussion, and also sending it out using the Champions Search facility - after removing personal identifiers, I will post the Champions Search replies (if I get any) in the Discussion on the website.
This was the first (so far only) reply to my Champions Search:
Dear Mike,
I hope you are well.
1. Yes the professional experience is fundamentally different from the experience of the relatives when a love-one dies
2. I am ashamed of the nurse using statement like the one you have mentioned. It is not a competition about how may people had died in our arms. Surely it's about dignity, compassion, and the wish of the dying person. If the person does not have capacity, then mental capacity act should be used and best interest meeting so decision can be made between all those who have the person best interest.
3. Sometimes nurses can become desensitise to the feelings of loves ones, by focusing on getting the task of the job done. I have always tried to put myself in the person shoes and support them to be comfortable with the dying process.
So sorry for the delay in getting back to you, extremely busy
Kind Regards
Janet XXX
Community Psychiatric Nurse
Person Centred Dementia Trainer
Hello Mike,
I am appalled at the response you received from that nurse, we're not all like that. As Janet previously said, this is not a competition and the experience as a professional is obviously different from the family and loved ones. Personally, I feel very priveliged if I am able to support someone in their last days or hours. If family are able to be there for the person that is the best option; and I am happy to support the family in that situation, as are my staff.
I am sorry that you had such a negative and unpleasant experience.
Kind regards
Dorothy
Sister/ Manager - neuro-rehabilitation Unit
Hi Dorothy,
I seem to be getting comments about the insensitivity and lack of professionalism of the wording I quoted (yes, I agree), and not really comments about the issue I wanted to get some feedback on.
Is the situation, perspective and experience of a relative whose loved-one is dying (especially at home), so different from the situation, persapective and experience and training of professionals, that the expereince and training of professionals can actually impede/prevent professionals from understanding the behaviour of relatives ?
I will explain how I got into this, later (I don't want to influence answers), but that is the issue I'm interested in: in reality, is this disjoint so marked, that professionals should be told 'not to try and get into the minds of relatives' ? Should people such as paramedics, simply be told to believe what relatives are telling them ?
A second reply from my Champions Search:
Hi Mike,
In answer to your question the death of a relative is different from the experience a professional will have of the death of their patients. Even with all the compassion and empathy we will feel during the death of our patients we do not have the complicated emotions that a relative will have during that time. The relative will have a past with that person in varying stages and dimensions over several years which will often cause their own reaction to be multi dimensional.
On the subject of CPR I know there has been a lot of research into the efficacy of CPR in those with multiple chronic life limiting illness ,especially in relation to the older adult and in most cases CPR would indeed not only be futile but deny many older people a natural, dignified and peaceful death.
I recently read that the success rate for older people with multiple chronic illness is less than 20% and of those successfully resuscitated less than 20% lived longer than 4 days. Also of those who did survive against all those odds it was with severe impairment compared to their previous health.
I think some people are mislead by how successful CPR is even in younger people with healthier vital organs.
Relatives will never want to lose their loved ones but they need to be supported and helped to understand what is possible and in the best interests of that loved one.
When I have been with a patient during their death I have felt that although I have played an important part in assisting all the family during the experience , it is their experience, not mine and it would be wrong of me as a professional to claim the experience as mine.
During the death of a loved one I am losing part of myself, part of my past, of my present and my future. I am in the centre of the goodbye, along with all those who are my family and recognise the pain I feel with the knowing of what this goodbye means to them.
When I am with the dying as a nurse I can recognise some of that in those I am supporting and it helps to empathise but I also realise that as someone on the outside, I can only understand a small part of what is a unique experience for each of us.
I hope this helps you Mike and I think it is worth remembering that the answer may well be a different one for all of us because the emotion surrounding the death experience is complicated whether you are experiencing it as a relative or as a professional. As professionals we must follow the protocol and guidelines to ensure that regardless of our own experiences of death we are doing what is best for our patients.
Kind regards
Linda
Staff nurse
Frail elderly unit
Mike,
Re -
Is a professional experience of involvement with the deaths of many patients, fundamentally different from the experience of a relative when a loved-one dies.
The short answer is yes. As said above - nurses do not have the long social history with that patient and the emotions that come along with a personal relationship. Nor should nurses have expectations on how the family will react when their loved one dies,we are all different. Some people have a vision on how their loved one should die and plans in place for it at home, but when it comes to it and death is imminent then some relatives panic and their vision goes out the window. That is completely understandable. As nurses we should never judge the emotions and behaviours of those who have lost or are losing a loved one. If we do then we are doing something fundamentally wrong and need to re evaluate our practice.
You know that this has highlighted how important a role we have as professionals in helping the dying and their families.
We all aim for a "good death" which should not only be a peaceful death for our patient but being aware of the lasting memory for the family and how they can find their own peace during such a profound, life changing event.
When I delivered babies during midwifery training I was aware that my patients always remember every detail of their birth experience and will recall the labour stories for years. They will remember what was said, who was kind, who was a bit abrupt or not so understanding.
I am now working at the other end of life and the same rings true.
Everyone will remember every detail about the death of their parent.
They also will remember what was done and said and who was helpful and who didn't seem to care
For professionals it may well be just another days work.
Maybe a satisfying day, maybe a bad day but both eventually forgotten as we move on.
But for those families a careless word or act during that time will never be forgotten.
Now the way I see it is that it is indeed an honour to be part of a memorable experience but we should be careful that we are remembered in our part in a positive way for what we do and say.
I am sure we will not get it right for everyone, every time but as long as our intent is to be supportive and helpful at least we can say we did our best.
This is at least something more professionals should be aware of because in my experience its often the tiny details and what appears trivial to us that the families focus on.
I'm sure we have all been slightly baffled by a relatives reaction to "wrong pyjamas"or some other minor grievance which has taken on more importance than it should in the whole process but it's important not to invalidate those feelings and to just "go with it".
We say so much without saying a word and even a nicely presented tea tray can say we care because we have thought about the person.
The sentence uttered which started this whole discussion is not useful to anyone. I don't understand what the point is?
It's not a competition is it? How strange to say such a thing to a grieving man.
I can only guess that this was said by someone who isn't coping with an issue regarding death in their own life and a classic example of the effects of a careless word and its effects on the bereaved.
Linda Bloice
Hi Linda,
Just to be clear about something.
When you write above:
'The sentence uttered which started this whole discussion is not useful to anyone. I don't understand what the point is?
It's not a competition is it? How strange to say such a thing to a grieving man.'
I entirely agree that the sentence I picked out, is 'weird' (coming from a HCP).
However, it was not said to me 'as a grieving man'.
It was written by a nurse during a 'discussion' on the Nursing Times website, by a nurse with whom I seem to have an ongoing disagreement. The disagreement seems (to me) to be based on the nurse's belief that because nurses are professionally involved, nurses inevitably can understand 'everything', and that nurses can understand what I would describe as 'the issues from the perspective of patients and relatives' because nurses observe lots of patients and relatives. I disagree with her - I think there are things you need to experience directly, as opposed to observing, to even get near to properly understanding them.
So I think your guess:
'I can only guess that this was said by someone who isn't coping with an issue regarding death in their own life'
is wrong - I think it was said by a nurse, whose basic position is simply that because I'm a 'mere layman', I cannot possibly understand 'death/dying' as well as a nurse can (and, as I'm trying to explore with this one, I don't agree with the nurse: the experiences of nurses and laymen are too different, so what is needed, in my opinion, is more discussion between clinicians and laymen, to try and improve this understanding of 'how the other sees things').
Janet, wrote this:
'I have always tried to put myself in the person shoes'
I am drifting a little off-topic, here - but only a little - because NOT 'putting myself in the relative's shoes', or in the patient's shoes, seems to be very common in clinically-authored guidance.
Over the weekend, I was sending some observations about an EPaCCS guidance document to its authors (EPaCCs is a system to try and introduce more 'joined-up and correct' end-of-life care/behaviour: it is the new, electronic, version of Locality Registers). One of my comments, was this:
'This document seems to seek to wish to identify a 'main informal carer' - this is an inappropriate assumption, because if as a dying man I had three of my adult daughters 'similarly involved' in my EoL are, why would I accept that one of the three could be identified as 'the main carer' ?! It is also offensive to even suggest that such identification is invariably possible, and it is presumptuous to state that professionals can 'chose/nominate a main informal carer'. This seems to be yet another example of an attempt to impose a 'rigid structure' onto something that is inherently and fundamentally non-structured - that happens all too often within NHS/clinical guidance.'
One of my issues with this, besides the 'Why should I 'nominate' one of my daughters, as being 'more caring' than the others !!!', is that I have a strong suspicion, that having 'nominated/identified' one carer, the NHS would then seek to ONLY 'send urgent messages' to that person alone. As I also wrote in the e-mail:
'It is also inappropriate to nominate one 'informal carer' as a 'first contact point' - if I am an Involved carer, and therefore potentially subject to liability under the MCA, I myself would legitimately expect to be DIRECTLY 'kept in the loop by professionals' !'
I've recently been discussing some EoL stuff with a lecturer, and after I pointed to this discussion, the lecturer came back quite quickly with (the bit in brackets, was a quote from my e-mail to the lecturer - actually, I'd raised this as 'I tried to use a quote to introduce a question about perspective, and perspective promptly intervened because several people immediately commented on how 'insenstitive/unprofessional' the comment {the title to this thread} was) :
This continues to interest me... I do think there is a fundamental difference between a a loved one dying and a 'patient' dying. That doesn't mean that a nurse cannot form a strong 'therapeutic' relationship with the people they are caring for.
(my question, was is experiencing the deaths of many patients, enough to give you an insight into experiencing the death of a single loved one ?).
Not really.. That doesn't mean a caring nurse will not feel sad and some sense of loss when a patient they have cared for dies but it is not the same as the loss you feel when a loved one dies.
The opposite may however be true.. Does having experienced the death of a loved one help you to have more empathy with patients? I think it can do...