Death and dying: does anyone really know how well are we doing in Scotland?

Mark reflects on the opportunity targets provide to improve our understanding of the quality of care and experiences at end of life.

As Game of Thrones puts it “All men must die” (women too of course). In Scotland around 56,000 people die annually.  Our health and care system devotes enormous resources to care in the last months and days of life.  However, there is no systematic data on the quality of care delivered or about people’s experiences.  Change is needed, but it isn’t simple!

Even the most healthy, active and independent individuals eventually face ill health or frailty as they approach the end of their lives. Deteriorating health, death, dying and bereavement affects everyone deeply and profoundly at some stage in their life.

Of the 56,000 who die it is estimated that as many as 46,000 people will have needs arising from living with deteriorating health for years, months or weeks before they die (people often described as having “palliative and end of life care needs”).

We know that use of health and social care services rises steeply towards the end of life and represents a very significant proportion of total resources available.   29 per cent of all acute bed days are used by patients in their last year of life.  33,000 older people live in a care home, their median length of stay is less than 18 months, over 60 per cent have dementia and over 11,000 die each year.

Beyond these stark statistics we currently know little.  However, addressing this yawning gap in our knowledge about the quality of care and people’s experiences isn’t straight forwards because:

• As Virginia Woolf said of her death it’s “the one experience I will never describe”
• People die at all ages, from neonates to centenarians
• People frequently move between settings in their last months and days, so indicators based on specific episodes are inadequate
• When health is in irreversible decline traditional outcome measures don’t apply – survival being the starkest example!
• What matters most to people during the months or years they have left varies enormously.  Your idea of a “good death” may be very different from mine.  Personally I’m hoping for good pain control, some transcendent music and not too many regrets
• People who are very ill, and families who are in distress, may not be able to provide feedback on their experiences of care
• Even with the best possible care, the last weeks, days and hours of someone’s life can be complicated, difficult and upsetting.  A bad experience may not be indicative of bad care

But these challenges aren’t insurmountable!  In our recent paper for the Independent Review of Targets and Indicators, being conducted by Sir Harry Burns, the Scottish Partnership for Palliative Care argues for the introduction of a single, system-wide national survey of bereaved informal carers, using carers views as proxies for the views of the dead person.

Specifically we propose adoption of the VOICES survey.  The survey was developed in collaboration with bereaved relatives and people nearing the end of life.  It covers a good range of issues which they and the public say are important to them.  The survey would measure what really matters – the views on the quality of care and outcomes of carers and the person they cared for.

Introducing the survey would be a good step along the road towards knowing how well we do death, dying and bereavement in Scotland, and would help maintain a focus on improving this area.

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