When the word choice first became so popular in Department of Health and NHS documents it always read like capacity to me – in kidney services it is not possible to offer choice without hospital haemodialysis capacity. That remains true but increasingly we know that home dialysis therapy offers real choice at the same time as reducing hospital based requirements. It’s good for those patients who want it and it certainly fufills the quality and productivity challenge . At the “Care of the Renal Patient Towards the End of Life” meeting hosted jointed by the Renal and Palliative Care section of the Royal Society of Medicine a few months ago there was a lot of discussion on how people with advanced kidney disease make decisions and on how much they are influenced by their doctors and nurses.
Information isn’t the key to making good choices, it’s actually the relationship between the person with advanced kidney disease, and often also the people who are close to them, with the multiprofessional kidney care team that is the most important factor. Conversation eats documentation for breakfast; but recording patients’ wishes can also drive communication processes that can and does ensure plans are in place in the weeks and days before death to, for example, manage the high symptom burden that goes with very low kidney function when people are on the conservative kidney care track or withdraw from dialysis. This can keep people at home and avoid urgent admissions during which dialysis might be started even though that isn’t what the patient wants and is only likely to prolong death rather than add value to life.
Conversations about death can be hard. At the meeting Professor Renee Fox (Annenberg Professor of the Social Sciences Emerita) gave a fabulous talk entitled “from dialysis to transplantation to palliative care, a trajectory” . Renee is a sociologist who began her career on ward F 2nd at the Peter Bent Brigham Hospital in Boston. In these wards Renee saw the emergence of dialysis and then transplantation and has spent a lifetime studying the impact of renal failure and its treatments have on patients’ families and healthcare professionals. Her seminal work “Experiment perilous: patients and physicians facing the unknown” is still in press and provides not only a fascinating insight into the development of modern kidney care which was led by pioneers whose names now adorn seminar rooms , prizes and named lectures across the globe . It also contains observations and lessons that are of prospective clinical value. Renee’s comments on the decisions to treat or not to treat, to elect for dialysis or what she points out, we rather euphemistically call ‘conservative kidney care’ was very thought provoking and raises many questions of far reaching significance. I am most grateful to Renee for allowing me to make her talk available for you to read here on my blog.
These are difficult conversations for all concerned. Knowing how particular patients make their everyday decisions gives important clues as to how that person may want to discuss their kidney care options. “What was the last big decision you made – buying a car, moving house, deciding which school for the children? Who did you involve? What information did you find useful? How long did it take you? What did you feel about the decision? How would you do it differently?”. These can be revealing questions and Robert Elias’s (Renal SpR at St George’s, London) has been studying the process and his work suggests that knowing how our patients reach such decisions is useful if we are to support patients with advanced kidney disease in shared decision making.
