"A Good Death?"

About: Western General Hospital / General Medicine

(as a relative),

I’d like to share the experience of the last week of my father’s life. His last 6 days were spent in the Western General Hospital, Edinburgh.

My father was 95, in poor health latterly with various different conditions. He was in and out of the Western with catheter issues every few months. He had lived independently until two years ago, caring for my mother who had dementia, but 2 years ago they had to move into a care home because of his health.

He was admitted on a Sunday at the beginning of April and, on speaking to the consultant in Acute Receiving, she was refreshingly honest about the situation and indicated that he was very poorly and may not rally. I saw him on the Monday and he was being well cared for but was clearly in decline. That was the last time I had a coherent conversation with him. I returned on Tuesday and spoke with the consultant from the Medical Assessment Unit and it was made clear that this was it, my father would not (barring a miracle) recover.

I had particular reasons for not wanting him to die in the Western and asked if there was any possibility that he could go to a hospice. I knew the answer would probably be no, but I wanted to ask. The consultant kindly said she would contact the palliative care team and ask the question. She popped in half an hour later to say that indeed it would not be possible.

I spent most of the remainder of the week at his bedside and (with two exceptions) cannot fault the care he received. The nurses were thoughtful, caring and compassionate. Even little things like shaving. Dad had not had a really decent shave since he lived independently and did it for himself. He made such a fuss when the carers shaved him in the home that it made it difficult for them. When I went in on the Wednesday morning, he had a young male nurse allocated to him and I must say I shed a tear when I realised that the young man had shaved dad and done it so well that he looked much more like himself, he would have felt more comfortable too. That young man was so attentive and caring and attended to dad wonderfully, I am truly grateful.

As the day went on Dad became increasingly distressed and restless and seemed in pain, this appeared to be difficult to control and was extremely hard to watch. By Wednesday night what he was being given was clearly ineffective. I asked the nurse who was on duty if she would at least call the palliative care team for advice and she told me that they only worked till 5pm and anyway he was written up for several different things. None of them worked and by Thursday morning I didn't know what to do.

His nurse on Thursday was incredible, she tried different things and kept phoning the palliative care team until someone agreed to come down. The palliative care nurse who came was amazing, she read all the notes and then came to see me. She was so kind and promised not to leave the ward until he was settled and they had established what would help him. She was as good as her word and, although it took some time, she stayed until she was sure he was settled and not in pain.

There were two things to note from my conversations with the palliative care nurse: firstly it was she who took the call from the consultant on the Tuesday about the hospice request and she had been surprised that, in addition to that question, the consultant did not ask for input from the palliative care team for end of life care of this patient. The second thing was that the nurse on Wednesday night was incorrect when she said that the palliative care team finish at 5pm. There is someone from the team on call 24/7.

My comments on these two situations are simply that the consultant probably thought they would manage the end themselves and in fact they were going to another ward and would not be in Medical Assessment after Tuesday so perhaps they thought someone else would contact the palliative care team if necessary. Secondly I don’t think the nurse on Wednesday night was being deliberately difficult, I think she was genuinely under the impression that she did not have access to advice from the palliative care team after 5pm. Hopefully she knows differently now.

I was initially horrified to think that not only would he die in the Western, but in a unit that is not designed specifically for palliative care, as patients are usually transferred on to other wards. I thought the Medical Assessment Unit would not be set up for such a situation. I could not have been more wrong, certainly as far as the nurses were concerned (less convinced about the doctors who seemed to feel a little helpless and awkward when they couldn’t fix dad).

Over the last two years I have haven’t hesitated to comment when Dad's care has been less than it should have been, so I want to shout out very clearly that his final stay in the Western was almost as good as it could have been and I’m sure lessons can be learned from the two issues mentioned.

I was with him when he died on the Friday and it was a peaceful passing, he literally just slipped away. The staff were absolutely lovely, both the young male nurse and the young female nurse who had cared for him were around and couldn’t have been kinder. I know I can’t name them on here but I would if I could.

Eight years ago I took my terminally ill sister home from the Western to die at home and I was with my mother when she died in the care home last year, so sadly I am all too familiar with death but I was scared that dad would not have the “good death” that my sister and mother had. It turned out to be as good a death as I could have hoped for.

So I’d like to say a massive thank you to all concerned for the generosity of kindness, care and compassion shown to both my father and myself.

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Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian

Dear bordersgirl57,

I wanted to say thank you very much for sharing your experiences with your father during his stay at the Western General Hospital. Please can l pass on my conolences to you and your family following your father's death.

You have given us so much rich and meaningful feedback and the team at the Western General Hospital wanted to say thank you and have asked if you would like to get in touch so that we can learn more on the 2 issues that you have raised.

Our contact details are:

Email: feedback@nhslothian.scot.nhs.uk

Tel: 0131 536 3370

Post: 2- 4 Waterloo Place, Edinburgh.

I look forward to hearing form you.

Kind regards


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Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian

I would like to echo the thanks for writing what must have been a very difficult piece. I will feed back your feelings to the ARU team. I am keen to discuss your father’s care both with my charge nurses, but also at our weekly unit meeting (attended by medical and nursing staff). I am touched that some aspects of your father’s care clearly helped and were important. I am also saddened and concerned about the bits we didn’t get right – the lack of knowledge about out of hours palliative care, failure to involve the palliative care team early and the impression that the medical staff gave of helplessness and awkwardness. I know many of us feel a bit impotent in the face of someone who is clearly dying, but I do believe that managing someone’s end of life is not only a core duty of being a doctor, but one of the most important things we can do and I’m sorry that we were lacking in this regard.

We’ll reflect on what we need to do differently and would be grateful for any further feedback.

Thank you once again for taking the time to post this.

Claire Gordon

Consultant in Acute Medicine

Acute Receiving Unit, Western General Hospital

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Update posted by bordersgirl57 (a relative)

Thank you for taking the time to respond to my story. I think I am quite philosophical about dad's death. He didn't want to be here any more, particularly after losing mum last year, and although we were very close and I miss him very much, I know it was best for him. Having watched my sister and mother die peacefully in very different situations, I was simply intent on managing the situation as best I could. I didn't want to come over as micro-managing and controlling - but I probably did! I had been his advocate for so long, a buffer between him and healthcare professionals as he hated hospitals. Until 2 years ago - he had literally never been hospital!

I know that the out of hours palliative care knowledge will be sorted and involving them earlier will be addressed so I really have very little to complain about. I have come across the reluctance of doctors before in dealing with death and they have tended to leave it to the nurses - it's a difficult situation and some of them are so young and perhaps it's something you have to go through to be truly empathetic.

Happy to comment on anything else that you might want addressed, but overall let's celebrate a job well done.

Kind regards

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