Families lack understanding of how patients on dialysis wish to approach end-of-life care
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Families of patients undergoing dialysis demonstrated an incomplete understanding of how their relative with kidney failure would choose to approach end-of-life care, study results indicated.
The findings show significant deficiencies in the current approach to planning for serious illness in this patient population, according to investigators, and highlight the “potential value of a more family-centered approach” to care planning.
“Among 172 dyads of patients undergoing dialysis and their family members, there was, at best, modest agreement between responses to a range of questions about end-of-life care. These findings are consistent with earlier work in a variety of different populations examining agreement between patients and their family members or surrogate decision-makers around resuscitation preferences and the value placed on life prolongation,” Fahad Saeed, MD, of the University of Rochester Medical Center, and colleagues wrote.
Survey of patients, family members
Researchers initially surveyed 997 patients receiving in-center maintenance dialysis at 31 nonprofit dialysis facilities in the greater Seattle and Nashville metropolitan areas; of these patients, 511 indicated they did not want the study team to contact a family member or friend and 104 indicated they did not have anyone to list.
“Perhaps the most striking finding was how hard it was to enroll family members in the study,” Saeed said in a related press release. “Many patients were unwilling to provide the names of family members who we could contact, and approximately 10% of patients indicated that they did not have a family member or friend to list.”
For the 172 family members who did complete the survey, Saeed and colleagues calculated the percent agreement between their responses and patient responses (39% of family members were spouses or partners, 27% were children, 15% were siblings, 9% were parents and 5% were friends; 59% lived with the patient).
Survey questions examined treatment preferences, values, preferred decisional role and prognostic expectations.
In total, 80% of family members reported they had spoken with the patient about whom they would want to make medical decisions, 63% reported having discussions about treatment preferences, 27% reported having conversations about stopping dialysis and 33% reported discussing hospice.
Findings indicated agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percent agreement was 83%), with family members being more likely than patients to report that the patient would definitely or probably want CPR.
Need for improved communication strategies
Agreement between patient and family member responses was “substantially lower” for questions on other aspects of end-of-life care, including preference for mechanical ventilation (62% agreement), values around life prolongation vs. comfort (45% agreement), preferred place of death (58% agreement), preferred decisional role (54% agreement) and prognostic expectations (38% agreement).
According to Saeed and colleagues, family members were more likely than patients to prioritize life prolongation, while also being more likely to indicate that the patient would prefer a patient-led or shared approach to decision-making compared with a physician-led approach. Patients had “more optimistic expectations” about prognosis than their family members.
“For people with advanced kidney disease, decision-making about dialysis initiation and discontinuation are often complex and intertwined with decisions about hospice enrollment. Limited discussion about dialysis discontinuation and hospice between patients and family members enrolled in our study highlights a potentially missed opportunity to prepare for these eventualities,” the researchers wrote. “Lack of prognostic awareness among patients and their family members and the relatively high degree of maximally discrepant responses to the question about expected prognosis are also striking. Both of these findings highlight the need for more work to improve communication between patients, family members, and clinicians and to understand what drives patients’ and family members’ prognostic expectations.
Even when there is substantial uncertainty about future illness trajectories, sharing information about prognosis can help to ensure that patients and family members have realistic expectations about the future course of illness and allow them to plan accordingly.”
According to Saeed, the study reveals that most family members do not have a “clear idea” of what patients with kidney failure would choose if seriously ill or dying.
“Because family are often in the position of making important medical decisions for people undergoing dialysis when they become seriously ill, these findings show how important it is for patients to discuss their wishes with those close to them and for clinicians and health systems to find ways to support these conversations,” he said.
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