Intended for healthcare professionals

Rapid response to:

Practice Essentials

Supporting relatives and carers at the end of a patient’s life

BMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j367 (Published 02 February 2017) Cite this as: BMJ 2017;356:j367

Chinese translation

该文章的中文翻译

Rapid Response:

Supporting family carers requires that they are trusted Re: Supporting relatives and carers at the end of a patient’s life

For some mysterious [at least to me] reason, this morning (Thursday) although the article retained its ‘subscription flag’, the entire article appeared in my browser, allowing me to read it.

This article concentrates on death in hospital, and I concentrate on death at home. The article points out that ‘Separating care of the dying patient from care of their relative is an artificial distinction’ and as I made clear in a previous response to the article (2 February), when patients are at home the distinction between ‘family carer’ and ‘healthcare team member’ is similarly ‘artificial’: however, to my ongoing annoyance, that distinction is still being stressed within much clinically-authored material.

The article also states ‘Emotional support starts with providing clear, honest information. Careful documentation of conversations helps to ensure consistency and reduce confusion’. I’ll briefly describe what happened to me, when my mother died at home a few years ago, and in the context of ‘documentation, conversations, confusion and also understanding’.

My mother died at home, and for about 4 days leading up to her death she was comatose. I had asked her GP after my mum became comatose ‘What would you like me to do, if my mum dies ?’. Now, I knew my mum was dying, and so did the GP: but I said ‘if’ despite us both knowing that was ‘when’. If you document that, do you write down what I said [thus leaving an apparent uncertainty which was never present] or do you change the words [thus failing to accurately record the conversation] ?

The GP’s reply was ‘call me at the surgery, or tell the out-of-hours GP that it was an expected death’. The reply from the GP was not recorded within the notes, although the lead district nurse was present at the time so she heard the conversation. My mother died about 45 minutes before I was sure the GP arrived at the surgery – I therefore made sure that my mum had died, and then phoned the surgery about 40 minutes after her death to ask for the GP to come out and certify the death. The GP had taken the day (a Friday) off and gone to Europe for the weekend – the receptionist told me to call 999, and I subsequently became involved with a 999 paramedic and the police he involved.

I was ‘bothered by’ the police for 7 hours that day, and left not only ‘grieving’ but incandescent with rage [whenever I wasn’t ‘numb’] over the entire weekend: on the Monday, after the GP and the coroner had phoned each other, the coroner invited me to his office, and he apologised to me (he was apologising for the police behaviour – he also claimed that he did not control the behaviour of the police, so actually he was merely expressing ‘sympathy’). The apology was in any event too late – the damage had been done.

While this is certainly too complicated to describe within the constraints of a rapid response, I can point at the issues:

1) The paramedic, and the police, were more interested in what had been recorded by the GP, than in what I explained to them: this isn’t satisfactory unless family carers ‘read and validate the notes’ – or better still, actually write things within the notes - because as a family carer, you are guided and informed by what the GP and DNs say to you;

2) The police in particular, couldn’t understand why I had not decided to call someone immediately my mum died: quite why a family carer would invariably do that, at the end of a 4-day terminal coma, is not obvious to me (some would, some wouldn’t in my opinion – it depends on the carer). But you clearly cannot be reconciled to an inevitable death, and also react to the death as if it is an emergency;

3) It was very clear to me, that neither the paramedic nor the police, had any real understanding of how complex dying at home is, when the reality is that people talk ‘around the death’ instead of about the death, and when you typically have very fractured communication, etc. You cannot neatly record, the incredibly complex – in particular, you cannot easily record the complexity of any particular home death, in a way which will allow people who were not involved in the care to understand it.

The way forward for death at home, is in my opinion what I pointed at (ref 1) when I previously wrote:

‘What is needed, is for family, friends and clinicians to be working together to support the patient - not an inappropriate separation based on 'who is, and who isn't, a professional'. And a move away from an emphasis on process and records, to 'what the patient as an individual wants to happen as understood by the people in ongoing contact with the patient'.’

Most of the material I read about end-of-life is written by clinicians, and its perspective is inherently clinician-centric: the stories I read of the failures within end-of-life are often written by bereaved relatives, and the perspective is very different.

Until family carers are trusted by default, and until people who are not involved in an ongoing way (the 999 Services, A&E staff) accept that they are ‘on the outside’, whereas family carers are not clinicians but they are ‘on the inside’, very unhelpful conflict will continue to be actively promoted between family carers and professionals.

Ref 1 http://www.bmj.com/content/353/bmj.i2188/rr

Competing interests: No competing interests

09 February 2017
Michael H Stone
Retired Non Clinical
None Private Individual