Caring.. how do we put the caring back into health care?

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With the imminent publication of the Francis Report I guess we are all reflecting on what  “care” really means. There has also been much debate about the Liverpool Care Pathway and the potential for its misuse. Over the Christmas break I experienced health care as a relative. Not as a doctor or a manager but at the sharp end of care, and perhaps in the most challenging environment: the elderly care ward of a district general hospital. Perhaps the place where you can really judge an institution’s commitment to patient centred care. It isn’t fast paced or exciting. It  is all about individual patients who are frail and vulnerable and often cant speak up for themselves. Get it right here and surely the rest is easy.

 My uncle, who was 94 was sent into hospital from the care home where he lived because he was increasingly poorly. He had widespread prostate cancer and no one expected him to live very long. I don’t know why he ended up in hospital in the first place. I hope if he had been my patient I would have managed his last few days where he was used to being, as close to being in his own home as possible. He was admitted with dehydration and a chest infection to his local hospital, not to a hospice but to a general ward for elderly people.

We went to visit him on the Saturday between Christmas and New Year, a 6 hour round trip, across the other side of the country. When we got there he was in a twin bedded ward. It was noisy, crammed  but clean. It was visiting time and three nurses were huddled around the nursing station. We were told it was impossible to speak to a doctor at the weekend as there was only one on duty for the whole hospital and the nurse could only tell us  “ nursing” information. We asked if there was a care plan? A Liverpool care pathway in place ?? No one seemed to know much but there didn’t seem to be a pathway in place. We could talk to the consultant on Monday. A conversation  in the corridor. We felt unimportant. A bit of a nuisance and yet we were his next of kin.. his closest family. Were they too busy to take us to a quiet place to talk? Was it too much to expect to be spoken to like it mattered?

My uncle held my hand and asked me if he would be alive tomorrow. He looked and sounded scared. He had been a fighter pilot in the war. The only one of his squadron to make it through to the end. He was a husband and a successful business man who worked in his family’s business when he came back from the war. A father who had buried  his 3 children .To me  he had always been brave and dignified, funny and charming, invincible. Now he was dying and he was frightened. Did anyone here care? As I looked at him I could see what they would see…. another old bloke on his way. Yet to me he was so much more.

On the Monday.. and several increasingly irate phone calls later and we got to talk to the consultant. No, he wasn’t ill enough to be on the Liverpool care pathway but wasn’t on antibiotics and was just having fluids into his body through a needle in his tummy.. He had wondered if he would die of his chest infection over the weekend but seemed to be picking up. So I am thinking "how can he be both not ill enough to be on the pathway and yet might have slipped away over the previous weekend?"  He wasn’t giving him anything for his anxiety because it might suppress his appetite. And I am thinking.. "This man is dying.. today/ tomorrow /next week… does it matter if his appetite is suppressed.? . surely it matters more if he is lying there feeling scared"
Isn’t that what the Liverpool care pathway is all about? Allowing someone to die with dignity, as free from pain and fear as possible? But perhaps I am mistaken…. There has been much in the papers recently about the Liverpool Care Pathway but my experience of it is that used correctly it is brilliant. It is about building an agreed was forward for someone who will die soon between those who are giving care and the person and their family. Managed care…. Care that acknowledges that the persons feelings are what is most important.. There is so much written about this.. so many plans and strategies “patient centred care”  “the six Cs”.. I have read these throughout my career as a GP. What I know is that Peter didn’t want to die in pain or in fear.

Early the next morning, the first of the new year my uncle died.

 His care was not terrible. He was clean,  tended to every couple of hours by trained nursing staff who took care of his pressure areas and kept him hydrated. So he wasn’t thirsty or in pain.. But it could have been so much better. It wouldn’t have taken much to move his care from  adequate to fantastic.. It wouldn’t have cost anything. It is all about attitude and culture. He could have died at his care home where he as surrounded by his own things and where he felt at home. It was peaceful there. He could have been given medication to reduce his fears. He might have told them there how he felt. He didn’t say anything to the staff in the ward because he didn’t know them and he as strictly old school.. stiff upper lip and all that. He could have been seen for the person he was brave and  funny but tired.

Why do we as an NHS keep failing.? Why is benign neglect still more prevalent than caring.. that real connection between people which acknowledges our common humanity and is a giving of respect, understanding and empathy from one to another. See this old frail man as if it was you in his skin, lying in that bed, feeling scared and lonely after 94 years, not just some old bloke without his teeth.