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Is palliative and end of life care relevant?

Author: Emma Hodges, Group CEO, St Giles Hospice
22 January 2016

Following the BMA report published earlier this month which, once again, highlights the variability in the quality and availability of end of life care, St Giles Hospice CEO Emma Hodges asks why, after so many studies and reviews, there is still something to write about.

In writing this blog I am not criticising any of the reports recently published on palliative and end of life care, or the hard work of many dedicated people.

However, I am questioning why, after so many studies and reviews, there is still something to write about?

Why have we not solved issues such as training for doctors, advance care planning, integration of services, coordination of care, too many hospital deaths or inequity of access to palliative care (to name a few)?

There is no lack of commitment or expertise and there is a powerful combination of hard data with emotive stories.

Of course money is a significant part of the issue, as is the capacity of health and social care professionals. However these issues are not going away and we appear to keep going round in circles reading, retweeting and agreeing (in the main) with successive reports without sustainable change.

I use the word ‘sustainable’ due to my frustration with successful pilots – which demonstrate value for money, savings for the health economy and improved experience of patients – not being mainstreamed or scaled up. Sustainable also in terms of improved continuity of commissioning and provider relationships and stable forums for addressing the palliative and end of life agenda locally.

So if money and capacity issues are the reality and cannot be an excuse for putting the findings of these reports into action, then what is the block?

Fundamentally this is about change, we have to change how we work, how we commission, how we fund, how we communicate, how we train and how we think about palliative and end life care within the complexity and enormity of this issue. 

Harald Schirmer said that “resistant behaviour is a good indicator of missing relevance.”

Are we making palliative and end of life care relevant enough?

Is it a key priority for all commissioners? Are there productive, cross-organisational forums really focusing on this issue together in each locality? Is there a public campaign with prime time television coverage making this issue relevant to everyone? Is the training, mandatory or otherwise, effective in sustaining change in practice or is it ‘sheep dip’ training, getting numbers through at low cost?

In my cynical moments I wonder how much silo working, competition and organisational boundaries are the real barrier in ensuring relevance. I won’t go into specific examples – but they do, unfortunately, exist.

It is not enough for providers to say they are committed to working together to improve services, this has to be embedded in the culture and behaviour of all staff. We, unfortunately, experience a difference between the commitment (and sometimes lack of) at the top of a provider and those staff working together at the front-line, and sometimes this is the other way round.

If there are conflicting agendas and competition, let’s be honest about it and work it through. If money or capacity is the issue, let’s be transparent and creative about how we address the challenges this brings.

We cannot complain on Twitter about the quantity of reports v sustainable action (as I did) without reflecting on whether you truly are doing all you can – through all of the complexity of change – to make a difference and make these reports count.

I need to make sure that I make the findings of these reports relevant to our partner providers, commissioners, funders, education partners, ourselves and our communities and ensure that the mechanism is in place to act on them.

Without relevance, I don’t believe we’ll see the cultural change needed in palliative and end of life care.

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