“Healthcare from the cradle to the grave” is the founding promise of the NHS. Yet what a health contrast there is between these bookends of our lives.
The care that brings us to the cradle is proactive, research-based and commissioned based on the needs of the population. Cradle Care begins with the care and counseling of people trying to conceive (including the amazing medical and scientific advances that are now making it possible for previously infertile couples and individuals to conceive).
Next there is care during pregnancy, with careful development of birth plans that respect parents’ decisions while prioritizing the safety of the baby, and vigilant midwives throughout pregnancy and delivery; and then the newborn person takes their own place as the recipient of NHS care from their cradle.
There is a call for increased funding for maternity services to improve access and safety, to ensure planning is robust, that all births are delivered with careful attention and, where necessary, prompt and expert intervention. Reaching the cradle safely is a priority.
But what about the transition to the grave? The UK mortality rate remains stubbornly at 100 per cent; About 1 percent of the population dies each year. How carefully is terminal care, a process that affects every citizen, commissioned, planned and implemented? Is proactive, research-based care given the same attention at the end of our lives as it was at the beginning? What about planning ahead and respecting people’s choices about the location of care or treatments they want to avoid, or access to expert monitoring for changing health needs as the end of life approaches?
Palliative care research is woefully underfunded. It is estimated that of the National Cancer Research Institute’s (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 for every £100 of research expenditure.
The National Institute for Health Research (funded by the Department for Health and Social Care) has an annual budget of more than £1.2 billion and does not list any projects researching end-of-life care in its annual statement for 2021-22. The infrastructure for research specific to palliative care is sparse and there are proportionately far fewer medical academic institutions than for other medical specialties.
Plan fares in advance little better. Family doctors have for decades been tasked with “finding their 1 percent” — trying to identify those people who are likely in their final months to years of life and inviting conversations with them that begin creating personalized treatment plans for when to develop the end of life is approaching. But given the reluctance of citizens to think about their own mortality and the scarce time of GPs, these conversations are not systematic.
The future NHS will not cure dying, but systematic consideration of our individual care plans remains possible. As with birth plans, end-of-life plans can describe our aspirations, but recognize that our caring may need to be adjusted to suit the circumstances we face. As we read our newspaper today, we may prefer to be cared for at home, but the idea of being cared for in a place with competent staff to help us move, to go to the toilet seems closer to dying , to bathe or to eat, to be more attractive.
We may now think that any treatment that offers a few more days of life would be worth pursuing, but closer to the end of our lives we may clearly prefer care that prioritizes our comfort and our treatment burden reduced.
During pregnancy, the path to medical consultation and the beginning of the planning process is clear: a positive pregnancy test triggers a series of actions, so that the pregnant person seeks contact with health services. But in end-of-life care, as there is no testing baton to trigger planning to begin, it is currently up to the NHS to find those of us who would be well advised to put our plans into action.
I wonder what would happen if we all took responsibility for our own planning instead. Trouble is, of course, only for mortals themselves. Just as we receive invitations to health screenings and decide whether we want to attend them, why not send us planning ahead information periodically, say from our 45th birthday onwards?
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A person’s tastes and plans will naturally evolve throughout life as lifestyle, commitments, health and social circumstances change. Planning ahead must not be a one-off event, it must become a ‘throughout my life’ process with regular checkpoints.
The process of dying itself is as old as mankind. It is a discernible process that we can foresee just as we can foresee the usual process of birth and labor. The future NHS will require staff to be trained and comfortable with ‘dying normally’: being able to recognize it and providing appropriate supportive care without needlessly complicating the process with the escalation of onerous medical procedures that do not affect our death prevent, but are quite possible prolong our dying.
Readers who wish to reflect on some of the decisions that may lie ahead for many of us are invited to take a look at Hospice UK’s planning tool. Full Disclosure: This is a work in progress, feedback via a built-in feedback tool is encouraged, and I’m one of the working groups involved in its development.
dr Kathryn Mannix is a retired palliative care physician and author. 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