Correspondence Palliative and End of Life Needs in Dialysis Patients To the Editor: The editorial by Jablonski outlining misconceptions about palliative care is both relevant and timely (1). These misunderstandings, that palliative care equals hospice care, that chronic illness does not qualify a patient for palliative care, and that end-stage renal dis- ease (ESRD) patients often live for years and continue to receive active treatment, severely limit access to high quality end of life care for renal patients in the UK, as well as in the United States, and it is pertinent to ask, as Jablonski does, why patients with ESRD rarely receive palliative care. In the UK, this is beginning to change, following gov- ernment guidelines which recognize the need of ESRD patients for palliative care (2), although detail of what those needs might be is not provided. Innovative services are emerging from collaborative working between nephrology and specialist palliative care professionals (3,4), and guidelines are beginning to emerge to guide practice (5). We have found it helpful to draw on varying experiences within different countries to help challenge current thinking, and an international conference in 2006 helped achieve this (6). This concurs with Jablon- ski’s emphasis on educational recommendations, in par- ticular that staff attend key conferences. The major need, however, is not just for education, important as this is, but for high quality research to address the myriad questions which arise in the care of these patients. How much do we really know about the end-of-life phase in ESRD? What are the major care needs of these patients and their families, and what are their experiences as they approach death? What are the best models of care to address these needs? And which interventions improve outcomes, especially when there are resistant symptoms and complex needs? Evi- dence is now emerging which demonstrates that the symptom burden in patients with ESRD is similar or greater than that of cancer patients (7,8), and outlines the importance of good advance care planning (9), but the emergent evidence remains intermittent and isolated, rather than coherent and comprehensive. UK nephrologists are perhaps more ready to recog- nize the importance of a ‘conservative management’ pathway, as an alternative to dialysis for frail older patients with multiple co-morbid conditions, but this pathway has yet to be studied in any great detail. Little is known about survival of conservatively managed patients (as compared to those receiving dialysis), although early evidence suggests limited survival advan- tage from dialysis in those with high co-morbidity (10). Information / communication needs have yet to be exam- ined in detail (11). The trajectory of illness, symptoms, and other components of care needs has not yet been mapped. In viewing the wider picture, it is clear that there is an urgent, unacknowledged and almost ubiqui- tous need for research into the palliative and end-of-life needs for patients with ESRD. FEM Murtagh,* H Noble,† and E Murphy‡ *Department of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK, †Senior Clinical Nurse Specialist, Barts and the London NHS Trust, London, UK, and ‡Renal Palliative Clinical Nurse Specialist, Guy’s and St Thomas’ Hospital NHS Foundation Trust, London, UK References 1. Jablonski A. Palliative Care: Misconceptions That Limit Access for Patients with Chronic Renal Disease. Semin Dial. Published online Dec 11, DOI: 10.1111/j.1525-139X.2007.00394.x 2007 2. Department of Health. National Service Framework for Renal Services - Part 2. London, UK: Department of Health, 2005 3. Murtagh FE, Murphy E, Shepherd KA, Donohoe P, Edmonds PM: End-of-life care in end-stage renal disease: renal and palliative care. Br J Nurs 15:8–11, 2006 4. Noble H, Chesser A: Developing a Renal Supportive Care Service for patients opting not to dialyse. End Life Care J 1:51–55, 2007 5. Murtagh F, Chai MO, Donohoe P, Edmonds P, Higginson I: The Use of Opioid Analgesia in End-Stage Renal Disease Patients Managed without Dialysis: Recommendations for Practice. J Pain Palliat Care Pharmacother 21:5–17, 2007 6. Murtagh FE, Higginson IJ: Death from renal failure eighty years on: how far have we come? J Palliat Med 10:1236–1238, 2007 7. Murtagh F, Addington-Hall J, Edmonds P, Donohoe P, Carey I, Jenkins K, et al.: Symptoms in advanced renal disease - a cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis. J Palliat Med 10:1266–1276, 2007 8. Chater S, Davison SN, Germain MJ, Cohen LM: Withdrawal from dialysis: a palliative care perspective. Clin Nephrol 66:364–372, 2006 9. Davison SN, Torgunrud C: The creation of an advance care planning pro- cess for patients with ESRD. Am J Kidney Dis 49:27–36, 2007 10. Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE: Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 22:1955–1962, 2007 11. Holley JL: Palliative care in end-stage renal disease: illness trajectories, com- munication, and hospice use. Adv Chronic Kidney Dis 14:402–408, 2007 Seminars in Dialysis—Vol 21, No 2 (March–April) 2008 p. 196 DOI: 10.1111/j.1525-139X.2008.00422.x 196