• 1.

    Saeed F, et al. Family members' understanding of the end-of-life wishes of people undergoing maintenance dialysis. Clin J Am Soc Nephrol [published online ahead of print September 10, 2021]. doi: 10.2215/CJN.04860421; https://cjasn.asnjournals.org/content/early/2021/09/01/CJN.04860421

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Many Family Members Do Not Fully Understand the End-of-Life Wishes of Patients on Chronic Dialysis

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Toward the end of life, people undergoing maintenance dialysis often receive intensive treatments, and some may lack the cognitive capacity to make critical decisions about their care. Therefore, family members and trusted friends can play an important role in helping ensure that end-of-life care is aligned with patients' values, goals, and preferences. A new study published in the Clinical Journal of the American Society of Nephrology examined whether such close contacts have a good understanding of these patients' wishes (1).

For the study, investigators surveyed family members and close contacts in two US metropolitan areas to determine their level of involvement in each patient's care and prior discussions about care preferences. The team also compared patient and family member responses to questions about end-of-life care. (The researchers used the word “family” to include partners and friends.)

Among 997 enrolled patients, 511 indicated that they did not want the study team to contact a family member, and 104 did not have anyone to list. A total of 382 provided contact information for one or more family members, although listed family members of 210 patients either could not be contacted or chose not to participate. In the end, 187 family members of 172 patients verbally consented to participate in the study and completed the survey.

“Perhaps the most striking finding was how hard it was to enroll family members. 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,” said lead author Fahad Saeed, MD, an assistant professor of nephrology at the University of Rochester Medical Center.

After analyzing the survey results from those who agreed to participate, Dr. Saeed and his colleagues found that family members were relatively involved in each patient's care, and many lived with the patient. Most family members indicated that they had spoken with the patient about treatment preferences, but fewer than one-third had spoken about whether the patient would want hospice or would want to stop dialysis if he or she were to become sicker.

Also, although family members had a fair understanding of patients' wishes pertaining to CPR, they had much more limited insights into how patients would respond to a range of questions about other aspects of end-of-life care, such as whether they would want to receive mechanical ventilation, the value placed on life prolongation, preferred place of death, and prognostic expectations.

“When we talked with family members of people on dialysis, most did not have a clear idea of what patients would want if they were seriously ill or dying,” said Dr. Saeed. “Because [families] 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.”

Alvin H. Moss, MD, who was not involved with the study and is a professor of medicine and the director of the Center for Health Ethics and Law at West Virginia University Health Sciences Center, noted that the findings are consistent with previous studies. “There is an urgent need—made more apparent by the pandemic—to improve advance care planning between patients with kidney disease and their families and between patients/families and the nephrology clinicians caring for them,” he said. He pointed to the recently completed Pathways Project, in which nephrology nurse practitioners and social workers, with the permission of attending nephrologists, conducted advance care planning and improved documentation of patients' wishes. He added that more studies are needed to determine the best way to implement advance care planning interventions in the outpatient setting and in dialysis centers.

“The ideal is that patients would have their wishes known and respected. Since patients report that many high-intensity interventions at the end of life are unwanted, it is reasonable to expect that there would be more referrals to hospice and fewer hospitalizations at the end of life, resulting in more peaceful deaths for patients and less complicated grief for families,” Dr. Moss said.

Reference

1.

Saeed F, et al. Family members' understanding of the end-of-life wishes of people undergoing maintenance dialysis. Clin J Am Soc Nephrol [published online ahead of print September 10, 2021]. doi: 10.2215/CJN.04860421; https://cjasn.asnjournals.org/content/early/2021/09/01/CJN.04860421

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