Voices: The future NHS will not cure dying – but it can smooth the transition

·5-min read
Infrastructure for palliative care-specific research is sparse, and medical academic posts are proportionally far fewer than for other medical specialties (Getty)
Infrastructure for palliative care-specific research is sparse, and medical academic posts are proportionally far fewer than for other medical specialties (Getty)

​​Health care “from the cradle to the grave” is the founding promise of the NHS. Yet what a healthcare contrast there is between those bookends of our lives.

The care that gets us to the cradle is proactive, research-based and commissioned based on population needs. “Cradle care” starts as care and advice to people seeking to become pregnant (including the astonishing medical and scientific developments that now enable previously infertile couples and individuals to conceive).

Next, there is care during pregnancy, with careful development of birth plans that respect parental choices while prioritising babies’ safety, and attentive midwifery throughout pregnancy and labour; and then the newly born human takes their own place as a recipient of NHS care from their cradle.

There is demand for an increase in funding for maternity services to improve access and safety, to ensure that planning is robust, that all labours are managed with careful attention and, when necessary, speedy and expert interventions. Getting to the cradle safely is a priority.

But what of the transition to the grave? The death rate in the UK remains stubbornly at 100 per cent; each year, approximately 1 per cent of the population dies. How carefully is care for those in the process of dying, a process that will affect every citizen, being commissioned, planned and delivered? Is there the same attention to providing proactive, research-based care at the end of our lives as at its beginning? What about planning ahead and respecting people’s choices for place of care or treatments they want to avoid, or access to expert supervision of changing healthcare needs as the end of life approaches?

Palliative care research is woefully underfunded. It is estimated that of the National Cancer Research Institute (a coalition of UK research organisations) annual budget of more than £600m, less than 0.7 per cent goes to palliative care research: that’s 70p in every £100 of research spending.

The National Institute for Health Research (funded by the Department for Health and Social Care) has an annual budget of more than £1.2bn and lists no projects researching end of life care in its annual statement for 2021-22. Infrastructure for palliative care-specific research is sparse, and medical academic posts are proportionally far fewer than for other medical specialties.

Planning ahead fares little better. GPs have been tasked for decades to “find their 1 per cent” – to try to identify those people who are likely to be in their last months to years of life and to invite conversations with them that will begin to shape personalised care plans for when the end of life looms closer. But with citizens’ disinclination to consider their own mortality, and GPs’ time stretched thin, these conversations are not taking place in any systematic way.

The future NHS will not cure dying, but systematic consideration of our individual plans for care remains possible. As with birth plans, end of life plans may describe our aspirations, but recognise that our care may need to be flexed to fit the circumstances we face. We may prefer home care as we sit reading our newspaper today, but closer to dying the idea of being cared for somewhere with staff competent to help us to move, use a toilet, bathe or eat might seem more appealing.

We may think today that any treatment that offers a few more days of life would be worth taking, yet closer to the end of our lives we may find ourselves distinctly preferring care that prioritises our comfort and reduces our treatment burden.

In pregnancy, the pathway for seeking medical advice and beginning the planning process is clear: a positive pregnancy test triggers a series of actions so that the pregnant person seeks contact with healthcare services. Yet in end of life care, with no test stick to trigger the onset of planning, the onus is currently on the NHS to seek out those of us who would be well advised to get our plans in place.

It makes me wonder what would happen if we all took responsibility for our own planning instead. Only mortals need trouble themselves, of course. Just as we receive invitations to attend health screening and choose whether to attend, why not send us Planning Ahead information at regular intervals, perhaps from our 45th birthday onwards, at five-yearly intervals?

Read more from our series on ‘How to heal the NHS’ by clicking here

An individual’s preferences and plans will, of course, evolve over their lifetime as lifestyle, commitments, health and social circumstances change. Planning ahead can’t be a once-in-a-lifetime event, it needs to become an “over my lifetime” process with regular review points.

The process of dying itself is as old as humanity. It is a recognisable process that we can anticipate, much as we can anticipate the usual process of labour and giving birth. The future NHS requires staff to be trained in, and familiar with, “ordinary dying”: able to recognise it and offer appropriate supportive care without unnecessarily complicating the process by escalation of burdensome medical interventions that won’t prevent our death, but may well prolong our dying.

Readers who would like to ponder some of the decisions that may lie ahead for many of us are invited to look at Hospice UK’s Planning Ahead tool. Full disclosure: this is a work in progress, feedback via an integrated feedback tool is encouraged, and I am one of the working party involved in its development.

Dr Kathryn Mannix is a retired palliative care doctor and writer. Her first book, ‘With The End In Mind’, was shortlisted for the Wellcome Book Prize. Her latest book, ‘Listen: How to Find the Words for Tender Conversations’, is published by William Collins