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Jane O. Schell, MD, discusses factors that impact use of palliative care in dialysis settings for patients in the United States, as well as potential solutions.

“Despite the significant morbidity associated with advanced [chronic kidney disease (CKD)], integration of palliative care often occurs late or not all,” the researchers wrote in the Journal of Nephrology. “While unmet palliative care need is identified as a common issue in patients with advanced CKD, the data describing the extent of need among patients receiving hemodialysis is limited. A more comprehensive understanding of the level of palliative care need is required to assist health services to facilitate optimal patient care.”

The investigators conducted a period prevalence study of adults attending two hospital-based dialysis units. In their review of 128 patient medical records, they identified 58 patients (45%) who stood to benefit from palliative care. Among those with indications for palliative care, most (72%) had not received or were not awaiting any such care.

The findings indicate “a missed opportunity to provide optimal and holistic care for patients with kidney failure that is likely to result in a higher burden of symptoms and poorer quality of life,” according to the study team, who also noted the need for interventions that will improve the delivery of palliative care for patients with kidney failure.

Palliative Care Challenges in the United States

Jane O. Schell, MD, an expert who was not involved in the study, talked with Physician’s Weekly (PW) about the results and their applicability to palliative care for patients receiving dialysis in the United States.

PW: Are any strengths or limitations especially noteworthy?

Jane O. Schell, MD: This is an important topic that deserves more attention, especially for people receiving dialysis. One limitation regards how palliative care needs were identified: based on prognostic worry and comorbidities rather than on patient-reported symptoms or support needs. Another limitation relates to how generalizable these results are for US dialysis patients and settings.

How does palliative care address the needs of patients on dialysis?

Palliative care addresses the needs of the whole person beyond the given disease the person may be living with. Palliative care aims to help with the symptoms and the impact that disease management may have on the person, whether physical, emotional, or spiritual. Palliative care also assists with helping those with serious illness and their families prepare for the future by discussing their goals and preferences.

What are the greatest barriers to integrating palliative care in this setting?

There are many challenges to integrating palliative care into dialysis care that span across different levels. From a system and policy perspective, dialysis is measured and incentivized based on disease-specific outcomes, such as biomedical indicators that often fall short of capturing the patient experience or needs. Dialysis clinicians, including nephrologists, are not equipped or educated on identifying or managing palliative care needs. Also, in the US, patients on dialysis are less likely to access timely hospice and end-of-life care.

How do cultural or socioeconomic factors impact access to such care?

In the US, minority patients, especially Black Americans, are disproportionately impacted by CKD and end-stage kidney disease, leading to dialysis. These populations are also vulnerable to social determinants of health, including limited access to healthcare, poverty, and food insecurity. All these factors impact their risk for kidney disease progression and their experience of living with kidney disease.

What role do patients and families have in decisions about palliative care?

Given the high palliative care needs of people living on dialysis, patients and families are key drivers in changing the care paradigm. The more knowledge the public has about palliative care and how it can help the experience of living with serious illness, the greater the push will be to create care models and policies to support palliative care delivery alongside disease-focused care, such as dialysis.

What could improve nephrologists’ ability to provide palliative care?

We developed a nationally recognized communication training called NephroTalk, based on VitalTalk, a national communication training program that teaches nephrology clinicians critical communication skills for discussing palliative and end-of-life care. Also, the Accreditation Council for Graduate Medical Education created a combined nephrology and palliative care fellowship to encourage dual-specialized physicians to participate.

What further research is needed?

I’d be interested in including more patient-related outcomes, such as physical, psychological, and support needs, and how these correspond with palliative care needs. Of course, I am interested in how we could create a scalable intervention to address these needs within a dialysis unit. To do this work and provide better palliative care and end-of-life care to people receiving dialysis will require policy changes and innovative care models.