The programme spoke to about four palliative care doctors and one nurse about their work. They interviewed patients who were all happy and vital. They showed people in a beautiful Hospice painting and talking about the songs that would be played at their funeral. It was a great thing. We need to see inside Hospices more often - the mystery of them needs to be debunked.
Despite both my parents being under the care of our local Hospice I can’t tell you what it is like.
I watched the Horizon programme battling with my emotions; the biggest one being anger. No, not anger exactly; more bewilderment. What I was seeing didn’t match my experience. There were no discussions with doctors from a palliative care setting. I’ve spoken about the doctors my parents saw before, who were all death deniers. Never did they manage to speak to a doctor like those featured on the programme. In fiction doctors are always the people who sit and patiently discuss a person’s options when they are told they are dying. Oh, and they are told that they are dying. No pretence; just honesty and statistics. To be fair, if I was going to write a novel I’d probably write what I would have liked to have happened too.
Both my parents had a nurse from the Hospice visit them. Lots of forms were filled in. Dad only saw the nurse once before she went on holiday and Mum had monthly appointments, which she hated. Mum and the nurse were not best matched. Mum couldn’t stand the sympathy, the head tilting, the sing-songy voice and the ‘its all going to be lovely, my lovely’ approach. At the last few visits, answering the same questions to get the forms completed was a huge trial. The nurse did her best but there was a doctor who wanted to play with his chemotherapy drugs on a cancer he’d not seen before. Doctors always outrank nurses, even if the nurses seem to be saying more sensible things.
As well meaning as the TV programme was trying to be, I do wonder if painting such a positive image is always a good thing. Some of the things I have found really difficult is that my reality of caring for someone who is dying is so different from how it's portrayed. Even writing about it, now, makes me feel as though I'm breaking some secret life rule. "Whatever you do, just don't mention how bad it can be." The Nurse on Horizon said, "When death is done wrong it can be so bad. So bad that it has repercussions that last forever. People never get over it." My Mum's death was done wrong. Or was it? She had palliative care intervention:Early. It came quite soon after her diagnosis. She was able to be at home (which apparently she had chosen) and on paper the death was quick. The forms make it look like everything was done well.
I try to tell myself that our experience was a freak; that everyone else gets good deaths. I try to think we were just unlucky but I'm not sure. The more people I speak to the more I think the difficult death is more common that we are admitting to. People tell me about relatives languishing in hospital for weeks/ months with no one telling them anything, or relatives dying at home in horrible and painful circumstances or arguing with paramedics that their dying relative had a DNACPR, only to be completely ignored or threatened with legal action.
The reality is different from the fiction. The doctor presenting the programme seemed genuinely shocked that as he put it, "all round good holistic care in the right setting can make such a difference." I really must stop shouting, "No shit Sherlock!" at doctors, even if they are on the telly and can't actually hear me. It would make all the difference but I wonder how many people get to access that.
End of Life care in this country is mainly provided by charities, which means there is a lack of standardisation (just as in cancer care the sexier cancers get more funding). Some areas will have absolutely fantastic services and others very little. People tell me that our Hospice is very good. However, there wasn't a bed available when my mum wanted one. We waited five days for a bed and then mum gave up on the idea, knowing that it was too late. However, it wouldn't have been too late to get some relief from her symptoms, or be somewhere where the drugs she needed to help were available, or to have someone give us a break, or to be the most qualified person present (or actually qualified person because I can tell you that an interest in music in no way qualifies you for dealing with a gruesome death). At the last form filling session the hospice nurse kept asking mum where she wanted to die. Apart from knowing that she really didn't want to die there was no way to answer that question. We had never seen the Hospice and didn't know if it was better than where we were. No one had thought to invite us for a visit.
The Horizon programme was a good one but it is just a start and maybe we need to be a bit more honest about what actually happens when we die and more honest with people about what stage of that process they are at. It might also be useful to start having conversations about putting people who are already dying to sleep (in the same we we do our favourite pets).
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