End of life / don’t discussion

[Reluctantcarer]

My 90 year old mother has just moved from hospital to a care home. Prior to her discharge a doctor came to talk to us both about her condition- which is stage 4 heart failure. The doctor, who did not pull the curtains round the bed for a semblance of privacy, then asked what my mother’s view would be of invasive procedures should her condition worsen. My mother confirmed that she would prefer nature to take its course. ‘ what if you need to come to hospital for intravenous antibiotics?’ ‘That would be fine’ replies mother.
I found it odd to have such a significant conversation as part of the discharge process & was further surprised when the doctor subsequently phoned me to relay another conversation she had had with mum. This time about cpr. I am comfortable that the recorded decisions reflect mum’s views but find the circumstances peculiar. I know mum is frail & inevitably moving towards end of life but no doctor has said as much. Rather than framing this discussion in the context of mum’s circumstances it has come along as a total tick box exercise. I also note that on mum’s discharge letter it says she does not have capacity. So why have the conversation with her?
Has anyone else experienced this?

 

[jaymor]

I think it is probably a case of if they don’t ask questions they can’t make a decision. My husband had Deprivation if Liberty safeguarding meeting every twelve months and I was always present. The assessor always read all his notes re care and medication before he/she saw my husband. Then he/she would always begin by saying good morning to me and asking how I was. Then the same question was addressed to my husband. The first two years he answered all the questions and from his care notes and daily diaries they would know that he was incapable of doing or having an opinion on anything that that had been asked. So result of meetings were he did not have capacity. Year three and four he had lost all vocabulary and either closed his eyes or just kept smiling as a reply. The assessor then knew he lacked capacity. Looking at my husband you would have thought nothing was wrong with him.

Our conversation re end of life and what medical intervention would take place was decided by the family knowing my husband’s views. No CPR, if he had stopped breathing then he was to be left in peace. Antibiotics could be given but after two courses for the same infection if the doctor said they were not working then no more to be given and he was to be made comfortable and no intervention.

 

[Reluctantcarer]

I think it is probably a case of if they don’t ask questions they can’t make a decision. My husband had Deprivation if Liberty safeguarding meeting every twelve months and I was always present. The assessor always read all his notes re care and medication before he/she saw my husband. Then he/she would always begin by saying good morning to me and asking how I was. Then the same question was addressed to my husband. The first two years he answered all the questions and from his care notes and daily diaries they would know that he was incapable of doing or having an opinion on anything that that had been asked. So result of meetings were he did not have capacity. Year three and four he had lost all vocabulary and either closed his eyes or just kept smiling as a reply. The assessor then knew he lacked capacity. Looking at my husband you would have thought nothing was wrong with him.

Our conversation re end of life and what medical intervention would take place was decided by the family knowing my husband’s views. No CPR, if he had stopped breathing then he was to be left in peace. Antibiotics could be given but after two courses for the same infection if the doctor said they were not working then no more to be given and he was to be made comfortable and no intervention.

Thank you for your reply. I think it is absolutely necessary to have these discussions before events overtake matters. My issue is that something so important is dealt with almost in passing & without any context or privacy.

 

[Palerider]

May I guide you to the UK Resuscitation Councils guidelines on matters around CPR and DNAR and perhaps the BMA's guidance.

I believe the correct approach is to ask the person concerned and then a discussion away from the bedside with family in a room where there is privacy and the reasons are explained, this also allows family or other NOK to ask the questions they need to ask to clarify matters.

BMA guidance:

https://www.bma.org.uk/advice/employment/ethics/ethics-a-to-z/decisions-relating-to-cpr

Resuscitation Council (UK) guidance:

https://www.resus.org.uk/dnacpr/

 

[Reluctantcarer]

May I guide you to the UK Resuscitation Councils guidelines on matters around CPR and DNAR and perhaps the BMA's guidance.

I believe the correct approach is to ask the person concerned and then a discussion away from the bedside with family in a room where there is privacy and the reasons are explained, this also allows family or other NOK to ask the questions they need to ask to clarify matters.

BMA guidance:

https://www.bma.org.uk/advice/employment/ethics/ethics-a-to-z/decisions-relating-to-cpr

Resuscitation Council (UK) guidance:

https://www.resus.org.uk/dnacpr/

Thank you for those links. Very helpful. The doctor was very young & in retrospect probably uncomfortable with asking the questions. But she could have set her questions in a more appropriate context. The whole experience was extremely rushed & frankly a box ticking exercise. This is a subject that is literally about life & death. It is important to discuss these issues but perhaps more training should be given in how to deal with people.