Dying is Part of Living

End of life care

Last week I was privileged to give the key note address at the National Council for Pallative’s Care annual conference on end of live care for people living with dementia. The focus for the conference was care planning and coordination – aspects of care we discovered in our recent report Cracks in the Pathway are not as consistent for people living with dementia as they should be.

I explained the focus CQC has on end of life care across all of the services we regulate, the questions we ask and some of our early findings. For example, in hospital services we have rated 60% of End of Life services as good or outstanding which sounds encouraging but that does mean 40% are inadequate or require improvement. Not what you’d want for your loved one or mine.

We are now carrying out a thematic review on inequalities in end of life care, looking, for example, at geographical variation and the inequalities experienced by older people and people living with dementia. We expect to publish the report in autumn 2015 and I hope that by highlighting good practice as well as shining a light on poor practice, we will be able to encourage improvement in this vital area.

Carers matter

Why we need to improve was vividly portrayed by three women who spoke from the platform about their experiences as a carer of someone living and dying with dementia. Varsha Dodhia, Christiane Smith and Louise Langham each had a different story to tell and some of the care they described was great. But they also experienced loneliness and isolation; bewilderment at the complexity of the health and care system; too little information; and a lack of focus on their needs as carers.

Each highlighted what would help – crucially someone to walk alongside them to help navigate this new and complicated world and to understand how carers feel. Simple asks really and we have a wealth of resources from organisations like SCIE to help us know what good looks like and how we can achieve it (take a look, for example at their new film on the words we use).

See the person, not the diagnosis

We need to understand too what bad looks like and the impact it can have. This was brought home by a contribution from a delegate at the conference – she was there in a professional capacity but told a personal story about how her mother who has dementia was treated in hospital at the time of her breast cancer diagnosis. The lack of care and understanding; the disregard for the family; the distress and anguish it caused were all profoundly shocking.

This was a difficult story to tell and the delegate, most of the panel and a good proportion of the audience were tearful as she told it. But it was an important story to tell – resonating again with some of our findings in Cracks in the Pathway that very often hospitals treat the physical condition but fail to take into account the emotional, social and psychological needs of the person living with dementia and their family. We can and must do better.

Being there

But what happens when the person you have cared for and loved dies? This is a painful, tough time sometimes made worse by the reaction of others around you – they may not know what to say and feel they are intruding so stay away. Last week Dying Matters launched their new campaign “Being There” to encourage and reassure us all that just being there is what matters to people who have been recently bereaved and can really make a difference.

I have seen the truth of that this year following the death of my old boss Louis who died suddenly after a long period of illness with cancer. His wife Laura is a close friend too. Although Louis’ death had been anticipated for some time, none of us were really prepared for it when it came, perhaps Laura least of all.

A support network kicked in with dinners cooked, stories shared, hands held, wine drunk and there was even a spreadsheet in the early weeks to make sure Laura wasn’t overloaded or left alone. Slowly but surely she has stepped along the grieving path – it’s not easy and in reality is never-ending (just think about all those messages about being with the one you love at Christmas). The progress she’s made is entirely her own doing and I know Louis would be proud of her. But I hope her friends being there helped too.

Dying Matters have produced a leaflet with tips of what to say and do and just as important, what not to do or say. I asked Laura what advice she would give, what had helped her. She said:

“At my most terrible and lonely time, people came to me. They held my hand, they told me I wasn’t alone, and they spoke about Louis. I am forever grateful for these wonderful friends. So if you know someone who is bereaved, go to them and simply be with them – it could be the greatest gift you give.”