Patient Experience: End-of-life Care for Patients with ESRD

Highlights Overall, participants in the USRDS Study of Treatment Preferences (USTATE; n=1000) endorsed a median of 5 symptoms. The most prevalent symptoms were weakness or lack of energy (61.0%), pain (52.0%), difficulty sleeping (49.3%) and itching (47.5%) (Figure 12.1). Approximately forty percent of USTATE participants were not sure of their prognosis. Among those who hazarded a guess, prognostic expectations were remarkably optimistic, with roughly one-third choosing >10 years, and only 11.2% choosing <5 years (Figure 12.2). Older patients were more than twice as likely to have a documented surrogate decision-maker as younger patients (74.0% in the oldest vs. 31.9% in the youngest age group). Patients with less optimistic prognostic expectations were also more likely to have documented a surrogate (62.5% of those with a prognostic expectation of 5 years vs. 40.1% of those with an expectation of>10 years). Black participants were less likely to have documented a surrogate decision-maker (34.4%) than White participants (56.6%) (Figure 12.3). Overall, 19.2% of participants indicated that they would value extending life, even if that meant having more pain and discomfort, 48.4% indicated they would value relieving pain and discomfort as much as possible, even if that meant not living as long, 32.4% indicated that they were not sure. Older participants and those with less optimistic prognostic expectations were more likely to prefer relieving pain and discomfort. Most participants indicated that they would want cardiopulmonary resuscitation (CPR) and mechanical ventilation. These preferences were less common among older individuals and among those with less optimistic prognostic expectations and more common among Black individuals. Among members of the overall dialysis population who died in 2018, younger and Black patients were more likely to receive CPR and mechanical ventilation and less likely to receive hospice care prior to death.