Author: Sara N Davison, MD
Care of CKD patients requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis.
Dialysis patients are not aware of their poor prognosis and falsely assume they can be kept alive indefinitely on dialysis; end-of-life issues are commonly avoided until late in the illness. Many health professionals believe that ACP may destroy hope and that the focus of care should be on their “life-sustaining therapy”, i.e. dialysis. Cognitive dysfunction associated with advanced CKD may prevent the ability for meaningful participation in ACP. Discussions must occur early in the illness while comprehension and decision-making capacity are preserved.
ACP should be initiated prior to the need for dialysis. The importance of early discussions is underscored by the fact that only ~ 60% of nephrologists would consider stopping dialysis for a non-decisional patient with unclear prior wishes.
CKD patients are often afraid to talk to their loved ones about their preferences; some patients will choose to prolong their time on dialysis due to family pressure. Surrogates must be aware of patient preferences and the values upon which these preferences were based. Including family is critical in achieving many of the goals of ACP such as strengthening relationships with and relieving emotional and financial burdens on loved ones.
All treatment options should be fully reviewed: 1) available dialysis modalities, 2) not starting dialysis and continuing conservative management, 3) a time-limited trial of dialysis, and 4) stopping dialysis with expectation of death. (See below for clinical practice guidelines on not starting or discontinuing dialysis) Estimate prognosis. The annual death rate for patients initiating dialysis is 20-25%; 15% - 25% of these deaths result from decisions to withdraw dialysis. Patients with CKD who elect dialysis generally experience progressive functional decline over months to years, punctuated by episodes of life-threatening complications. Elderly or chronically ill patients with co-morbid diseases, at the initiation of dialysis, can be expected to have greater complications and a shorter survival. Poor prognostic factors such as older age, low serum albumin, poor functional status, and comorbid illnesses such as diabetes and cardiovascular disease can be used to estimate prognosis. Anuric patients, who elect to not initiate or discontinue dialysis, typically survive for 7-14 days. The prognosis is longer for patients with residual renal function who continue to make urine.
Emphasize how you expect their illness and proposed treatments will impact their daily function. Discuss the impact of the various dialysis options on day-to-day function.
References: 1) Shared Decision-Making in the Appropriate Initiation of and withdrawal from Dialysis. Clinical Practice Guideline. Renal Physicians Association and American Society of Nephrology. Washington DC, 2000. 2) Chambers EJ, Germain M, and Brown E, eds. Supportive Care for the Renal Patient. Publisher: Oxford University Press; 2004. 3) Davison SN. Facilitating Advance Care Planning for Patients with End Stage Renal Disease: the Patient Perspective. CJASN in press 2006. 4) Holley JL. Palliative Care in End Stage Renal Disease: Focus on Advance Care Planning, Hospice Referral, and Bereavement. Seminars in Dialysis 18(2): 154-156, 2005. 5) Michel DM, Moss AH. Communicating Prognosis in the Dialysis Consent Process: A Patient-Centered, Guideline-Supported Approach. Advances in CKD. 12 (2): 196-201, 2005
