Intended for healthcare professionals

Rapid response to:

Clinical Review

Care of the dying patient in the community

BMJ 2013; 347 doi: (Published 03 July 2013) Cite this as: BMJ 2013;347:f4085

Rapid Response:

Re: Care of the dying patient in the community

I would like to comment, about an issue raised by the Summary Points:

• Anticipatory care planning should include discussion and documentation of patient preferences, anticipatory prescribing, and completion of a do not attempt cardiopulmonary resuscitation order

• General practitioners have a key role, in both homes and care homes, before and after death

My lay interest in end-of-life behaviour, especially for those patients who are still in their own homes, has led to me discussing what I refer to as ‘talking about the dying bit’ with various people, and it is still very problematic.

Most people who analyse end of life care and who are not a person who is routinely in a position to initiate ‘discussions about dying’, seem to be convinced that if someone starts that conversation (be that the patient, a professional or a relative) things usually go more smoothly subsequently. But there do not seem to be any very robust figures about how often the conversation is actually started, and when it is started, by whom.

Furthermore, some of the clinicians involved, seem even more reluctant to discuss the dying part early enough, than laymen – a nurse told me this:

‘I saw a doctor receive a punch in the face after imparting the reality of a patient's condition. His crime? According to the patient, it was because the doctor had taken away his hope.’

A Social Worker working primarily with the elderly/ terminally ill told me this:

‘In my experience some patients do welcome the choice to decide following discussion with a doctor for a DNAR , they view their general quality of life as so poor its is a relatively easy choice for them . However I have generally found that it is very
difficult for Doctors to have this discussion and they tend to obscure the information with medical jargon, talk around the subject ,and often in such a short timescale that it often leaves the patient wondering exactly what the purpose of the discussion actually was , It is only after, perhaps with the support of another professional ,
trusted nurse etc that they actually come to terms with the questions / discussion / prognosis etc.’

When I asked if patients need to be told of terminal prognoses, and if clinicians believe telling the patient would be very upsetting should the relatives be told instead/first, someone posted the following on the Dignity In Care website:

‘Hi in my opinion i think that the family should have a meeting with all the consultants involved and discuss there options first to see if any more can be done for the person thats involved if every thing possible has been done then the family and the consultants should go and tell the person in question that they only have hours or weeks to live why i think this is because i had to go thou some thing last year when the hospital told me my husband only had 2 hours to live and he had never been ill in his life it was very sudden.’

Someone else wrote this:

‘Having worked on a care of the elderly ward as a ward sister for a few years. We had an excellent consultant and he would discuss the option of CPR on every admission with the pt- if the patient was found not to have mental capacity or able to make the decision he would ensure an mdt with involvement of the relatives was always done. This always worked on our ward- ( except a few occasions where there were different circumstances with relatives-)’

The question, is how are the cultural and other barriers which tend to inhibit discussions of ‘the actual dying bit’ to be overcome ? Clinicians seem relatively keen to discuss care during the progression towards death, and aftercare of grieving bereaved: but the closer to ‘the moment of death itself’, the quieter clinicians seem to become, in terms of being willing to have honest and open discussions with their patients and the public.

I frequently discussed these issues with the former Head of End of Life Care at the Department of Health, Tessa Ing, and there are some very complex issues about decision making once patients have lost mental capacity, but in my opinion Tessa was spot on when she wrote (discussing some publications):

‘… if they’re used they will go a long way to making the problem disappear, because once the right people start talking to each other in individual cases - patients, families, professionals and all - you hugely shrink the number of instances where the technicality of who legally decides what is legally important.‘

A huge advantage of talking to patients ‘early’, is that you can get clear decisions from the patient about things such as attempted cardiopulmonary resuscitation in the future – then, you can tell everyone involved what the patient has decided, and everyone can just follow the patient’s decisions, which is much less challenging than to try and make decisions in lieu of the patient, whoever is trying to make such ‘proxy decisions’.

Competing interests: No competing interests

06 July 2013
Michael H Stone
retired non-clinical
none layman Coventry