Correspondence: Palliative and End of Life Needs in Dialysis Patients

Abstract

TotheEditor:The editorial by Jablonski outlining misconceptionsabout palliative care is bot h relevant and timely (1).These misunderstandings, that palliative care equalshospice care, that chronic illness does not qualify apatient for palliative care, and that end-stage renal dis-ease (ESRD) patients often live for years and continueto receive active treatment, severely limit access to highquality end of life care for renal patients in the UK, aswell as in the United States, and it is pertinent to ask, asJablonski does, why patients with ESRD rarely receivepalliativecare.IntheUK,thisisbeginningtochange,followinggov-ernment guidelines which recognize the need of ESRDpatients for palliative care (2), although detail of whatthoseneedsmightbeisnotprovided.Innovativeservicesare emerging from collaborative working betweennephrology and specialist palliative care professionals(3,4), and guidelines are beginning to emerge to guidepractice(5).Wehavefoundithelpfultodrawonvaryingexperiences within different countries to help challengecurrent thinking, and an international conference in2006 helped achieve this (6). This concurs with Jablon-ski’s emphasis on educational recommendations, in par-ticularthatstaffattendkeyconferences.The major need, however, is not just for education,important as this is, but for high quality research toaddress the myriad questions which arise in the care ofthese patients. How much do we really know aboutthe end-of-life phase in ESRD? What are the major careneeds of these patients and their families, and whatare their experiences as they approach death? What arethe best models of care to address these needs? Andwhich interventions improve outcomes, especially whenthere are resistant symptoms and complex needs? Evi-dence is now emerging which demonstrates that thesymptom burden in patients with ESRD is similar orgreater than that of cancer patients (7,8), and outlinesthe importance of good advance care planning (9), buttheemergentevidenceremainsintermittentandisolated,ratherthancoherentandcomprehensive.UK nephrologists are perhaps more ready to recog-nize the importance of a ‘conservative management’pathway, as an alternative to dialysis for frail olderpatients with multiple co-morbid conditions, but thispathwayhasyettobestudiedinanygreatdetail.Littleisknown about survival of conservatively managedpatients (as compared to those receiving dialysis),although early evidence suggests limited survival advan-tage from dialysis in those with high co-morbidity (10).Information⁄communicationneedshaveyettobeexam-ined in detail (11). The trajectory of illness, symptoms,and other components of care needs has not yet beenmapped. In viewing the wider picture, it is clear thatthere is an urgent, unacknowledged and almost ubiqui-tous need for research into the palliative and end-of-lifeneedsforpatientswithESRD.