A practical guide for the care of patients with end‐stage renal disease near the end of life

Abstract

Most patients who rely on dialysis for treatment of end-stage renal disease (ESRD) never receive a kidney transplant. Therefore, it is important for nephrology providers to feel comfortable discussing the role of dialysis near the end of life (EOL). Advance care planning (ACP) is an ongoing process of learning patient values and goals in an effort to outline preferences for current and future care. This review presents a framework for how to incorporate ACP in the care of dialysis patients throughout the kidney disease course and at the EOL. Early ACP is useful for all dialysis patients and should ideally begin in the absence of clinical setbacks. Check-in conversations can be used to continue longitudinal discussions with patients and identify opportunities for symptom management and support. Lastly, triggered ACP is useful to clarify care preferences for patients with worsening clinical status. Practical tools include prognostication models to identify patients at risk for decline; ACP documents to operationalize patient care preferences; and communication guidance for engaging in these important conversations. Interdisciplinary teams with expertise from social work, palliative care, and hospice can be helpful at various stages and are discussed here.

Dialysis or Death: A Qualitative Study of Older Patients’ and Their Families’ Understanding of Kidney Failure Treatment Options in a US Public Hospital Setting

“…This is likely, at least in part, due to clinicians inadequately explaining the realities of advanced CKD trajectory and prognosis throughout the disease course, which would be needed to help dispel such misperceptions. 22 Additionally, low health literacy in our particular population likely serves as a barrier to communication about end-of-life choices, as Ladin et al 23 found in their study of end-of-life discussions among dialysis patients 75 years and older.…”

Health service utilisation during the last year of life: a prospective, longitudinal study of the pathways of patients with chronic kidney disease stages 3-5

“…We found that respiratory distress was the most common trigger to both EDP and IPA compared to findings in other studies of patients with CKD [ 8 ] or cancer [ 54 ] where pain was more likely to trigger an EDP. Patients with advanced CKD will benefit from palliative care input to initiate end-of-life discussions and to help determine future goals of care [ 55 ] such as their preferred place of care and withdrawal from dialysis. Furthermore, in collaboration with renal services, PCS can provide support with symptom management, and psychological support and education for both the patient and carer to manage expected exacerbation of symptoms such as breathlessness and pain [ 24 ].…”

Predictors and Assessment of Hospice Use for End-Stage Renal Disease Patients in Taiwan

“…Hospice and early palliative care are generally considered as an alternative and supportive care to offer symptoms relief and optimize the quality of life among ESRD patients [ 2 , 3 , 4 , 5 , 6 , 7 ]. However, discontinuing intensive dialysis and receiving hospice care can be a more difficult decision than withholding treatment, and thus, hospice remains underutilized for ESRD patients [ 8 ].…”