Dr Peter Rookes
I remember as a child attending the funerals of my Aunts and Uncles in the Devon village of Ipplepen. When my grandmother died she lay in her coffin in the front room of the house until the funeral, which was a grand affair, as it was for everyone. The hearse moved slowly through the local streets and the long line of mourners walked slowly behind. Passers-by stopped in the street and bowed their heads and took off their hats.
A few years later when I was a young student nurse, working on a medical ward, I was concerned when the ward sister pulled the curtains around the beds of the other patients until the body of a patient who had died, had been unceremoniously removed. When we were asked by the other patients about the deceased, we were instructed to say that he had been moved to another ward. We weren’t to mention the word ‘death’ for fear of upsetting the other patients.
These two situations starkly contrasted in my mind and ignited my interest in End of Life Care. When I was Chief Nursing Officer for Central Birmingham in the 1980s I chaired the working group developing a Palliative Care strategy (the term End of Life Care hadn’t yet come into vogue). We identified that there were patients for whom there was no further curative treatment, and instead of being seen as a failure not to be spoken about, we should provide proactive care to help both patients and their relatives at the end of their life and facing death. Busy acute wards were definitely not the place for people to prepare for their death. It was at this time that the specialist skills for giving palliative and end of life care were being recognised and developed, accompanied by a growth in the hospice movement.
This was also an era when the value of hospital chaplaincy was also being recognised, not just for church-goers but also for a much wider group of patients who needed pastoral as well as spiritual support at a stressful time of their lives. I well remember one of our liver transplant surgeons, who was an atheist, agreeing to include chaplaincy sessions in our bid to the Department of Health to develop the service. At that time the mortality rate from liver transplantation was very high and patients needed a lot of support whilst they were making the decision and throughout the treatment. As our community became increasingly multicultural and multi-faith, so it became necessary to recruit chaplains to reflect this diversity.
In 1992 Jean, my late wife, and I attended mission college for two terms and ended up with VSO working in Maldives, a totally Muslim country (God takes us in all sorts of directions to get us where he wants us!). Next stop was Papua New Guinea, where we worked for 8 years developing health services, and then 4 years researching Christian health services in developing countries, carrying out field studies in India, Malawi, Kenya and Uganda. The experience again confirmed the value that people put on pastoral and spiritual care as they come to the end of their lives. People in these countries also had greater resignation to their impending death and were preparing for it, sometimes because they were not aware of available treatment. There is a tension between seeking treatment and gracefully accepting that there is no further curative treatment.
I later joined the governing body of Birmingham CrossCity Clinical Commissioning Group and was closely involved in developing the End of Life Care strategy and working towards the Pathfinder status awarded by the NCPC (National Council for Palliative Care).
This professional journey in palliative healthcare became very personal when my wife Jean was diagnosed with terminal cancer. You can read her story here.
So, from both my professional and personal experience, what is it that makes a difference to patients at End of Life? First and foremost, it is having family and friends who care and are supportive, followed by health professionals who treat each patient and their relatives as individuals, addressing them by name, introducing themselves, taking the trouble to read their records and having a caring approach without being patronising.
Third is being in the right place with appropriate support for each stage of the journey, which could include home, acute ward, palliative care ward or hospice.
Finally, the accessibility of symptom control, particularly pain relief and especially for patients at home. The adage that nobody needs to be in pain is still more of an aspiration than a reality for many people.
The emergence of palliative care is just one aspect of the journey of my life, during which not only medicine but our attitude to death and dying have changed radically. But there is still much more to be done: the journey continues.