Our workshop on supportive and palliative care for people and families with kidney disease was oversubscribed. A marker, I think, of the importance of the topic and the interest of the whole multiprofessional team in improving care during this phase of our patients’ illness. It also reflects the quality of the programme that Stephanie Gomm (Consultant in Palliative Medicine, Salford Royal), Ken Farrington (Consultant Nephrologist, Lister Hospital), Jane Heaton (Renal & Vascular Policy Manager, DH) and the Steering Group have put together.
The National Service Framework for Renal Services led the way in national policy by having a section on end of life care – it was the first NSF to do so. The kidney care community can be proud of the progress we have made from the mantra of “death from kidney failure represents a failure of dialysis” to the informed position of “kidney disease is linked with increased morbidity and mortality, dialysis is not the best option for every individual and supportive and palliative care are integral to a high quality care plan for individuals with kidney disease”. The pioneers who talked about the “no dialysis option” with individuals and families and who wrote up and presented their experience and outcomes were brave. For a subject that is an inevitability for us all it has been taboo for too long and is surprisingly easy to avoid in conversation.
One of the challenges is that modern life, the longevity of the population, the very success of modern medicine has made us one of the first generation in which many of us have not encountered or been involved in the care of close relatives or other loved ones in the process of dying. I am reminded by a phrase in The Godfather when, the dying Genco Abbandado , Consigliore before Tom Hagen, says to the Don "Godfather, Godfather .. save me from death".
In comparison with other organ failure such as heart failure or respiratory failure the clinical situation in advanced chronic kidney disease demands discussion during the process of choice or options for replacement therapy. Several units have a policy that information about palliative and supportive care is presented and discussed with all patients who have advanced kidney disease in the same way that transplantation and dialysis options are explored. Such an approach provides the opportunity to return to that discussion at a later date when the surprise question
"Would you be surprised if your patient were to die in the next 6-12 months?”
becomes positive even in those in whom the initial preparation was for a pre-emptive transplantation.
The workshop brought together recent developments in both the kidney and palliative care worlds – a lot of progress has been made through the work of the Renal NSF Action Learning Sets, the overarching End of Life Care Strategy and as part of the Next Stage Review.
Part of the exercise was to bring together the bits of the jigsaw that we have already worked out, and to share those with other kidney care teams. This helped the workshop to stop the gaps and to discuss ways of overcoming the barriers to implementation.
The key task of the day was to agree an action plan for delivering improved supportive and palliative care for people with kidney disease that can be implemented in the next 18 months. We will publish that in May. I am very pleased that Ken Farrington and Stephanie Gomm have agreed to continue to lead the work. Kidney care is there to work with networks and local teams to support delivery to people with established renal failure to live life as fully as possible and enable them to die with dignity in a setting of their own choice. To achieve this “people with established renal failure should receive timely evaluation of their prognosis, information about the choices available to them, and for those near to the end of life a jointly agreed palliative care plan, built around their individual needs and preferences” (quality requirement of the Renal NSF). The workshop brought together recent developments in both the kidney and palliative care worlds – a lot of progress has been made through the work of the Renal NSF Action Learning Sets, the overarching End of Life Care Strategy and as part of the Next Stage Review.
We hope to bring together all the relevant material soon so that the learning, techniques and tools are available to the whole kidney community.