Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

RATIONALE & OBJECTIVE: Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population.

STUDY DESIGN

In-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.

SETTING & PARTICIPANTS: 42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston.

OUTCOMES

Completion of advance directives and self-reported perceptions, preferences, and experiences of ACP.

ANALYTICAL APPROACH

Descriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses.

RESULTS

Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.

LIMITATIONS

Single metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size.

CONCLUSIONS

Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.