On World Hospice and Palliative Care Day (9 October) NCRI Consumer Forum member, Paul Charlton, has written about his experiences of palliative care and his involvement in the NIHR Palliative and End of Life Funding Committee.
In just a few weeks, after World Hospice and Palliative Care Day – 9th October 2021, I reach age 70. It’s a significant event as that is a long time to have lived – 70 years. Whether it is to be old – or the beginning of old – is neither here nor there. The point is that I have survived to have become someone whose life’s itinerary has many, many stopping points to look back at and to capture and to then unpack their stories. Yesterday for example.
Yesterday, I was one of seven people convened by the National Institute of Health Research to award funding to health research bids concerned with palliative and end of life care. This was a really important task, with my role informed as someone who has lived three times in the company of my immediate family as they died. One was my father, who died 12 years ago at age 90. He had accepted his death, saying some wonderful words to the hospital clinician as she told him his lung cancer was untreatable and that palliative care at home was now his life’s end pathway.
He smiled with the fullness of a deeply felt contentedness and said: “It’s fine… really… I have had a wonderful life… I had a wonderful wife… I have wonderful children… I have been all around the world…and now I just want to be with Peggy again…” He looked at the clinician and offering a loving reassurance to her apology, said again… “It’s fine…”. Peggy was my mother. She had died within palliative care just a few years earlier had lived in a nursing home for some seven years following a severe stroke.
My mother and father died in the same Scottish hospital. It would have been raining, as it almost always was on the Clyde coast.
By contrast, my wife Aloka died aged 46 just as the youngest of her children had become five. She was angry about dying… Couldn’t discuss what was being done to her, including with the children. So I arranged a discussion for them with the health visitor at our GP practice… To give them the chance to ask the questions that I didn’t know they wanted to ask… Cancer! A first emergency treatment had seemed to offer her a miracle, but a few weeks later the cancer was ravaging her body again and palliative care was wrapped around. She died in the front room of our home in a hospital bed specially brought. In those last months, her home care friends – she had worked for the Council as a home carer – looked after her efficiently and well.
And a long time ago… I was only 34… so a full half of my 70 years’ time ago… Jeannette my oldest daughter’s mother died… Cancer! Our daughter was one year and four months old. Her palliative care was organised by a specialist cancer nurse at London St Bartholomew’s Hospital. I have gentle memories of the determined care taken with balancing her drug regimen to manage her pain. I was asleep and had my head on her legs when she died in the hospital bed. Her ashes lie within the hospital grounds – the nurse specialist arranged permission as this was also our daughter’s birthplace.
I had come to this invitation to contribute a blog or opinion piece reflecting a World Hospice and Palliative Care Day so as to “highlight key areas of research that you’ve been involved in.” My intention had been to describe the funding call, a two-stage process, with yesterday’s being the first encouragement by the NIHR to construct local and national networks to enhance the opportunities for good research study applications to come in the second funding stage in 2022 (1).
This NIHR funding call had asked for a range of projects in size and scope costing between £50,000 and £100,000, running for a period of 12 to 18 months, to support the establishment and growth of partnerships, networks and collaborations in palliative and end of life care. The expectation was that this activity would result in research proposals for submission in part two of the call.
There were 30 applications from all four nations of the UK – so a hard day’s work!
As one of the two public contributors to the panel’s decision making, my role’s focus was to bring scrutiny as to whether meaningful input of patient and public involvement was present or absent in the application. I was to look at the adequacy of funding to that involvement and whether the application was clear about the role public contributors were to play in the research partnership.
Such objectivity is not so easily found when memory is so instantly reconnected to the ones you love and to the care given in their dying.
Living alongside dying, inscribes a richness of understanding not readily revealed by words, even as a poem or a song. How much more distant then, is the health researcher and health funder whose motivation is, inevitably, obscured by the application methodologies obliged by the science of good research? My contribution to this funding discussion was to bridge the methodology of public involvement considerations with being forever mindful of being someone who has lived alongside the research subject – she, he, has a name.
So, it’s impossible to write about yesterday’s palliative care and end of life health research funding committee, without my fingers falling onto the keyboard of my own stories. They inform everything brought to mind yesterday and concentrated my effort on making the right decisions on which funding to release and which not to release.
I experienced yesterday as an unfettered confirmation of the place for public involvement in the National Institute of Health Research arrangements for funding health research.