Formalizing a Palliative Approach to Dialysis Care

Ashley Rotella, BSN, MSN

There are approximately 786,000 individuals in the United States living with ESRD (1). The burden of this disease often has a profound impact on the patient and their family. Some of this burden is related to the symptoms of ESRD, the ESRD therapy, symptoms of the patient’s comorbidities, and side effects from medications. For the patient, these encumbrances significantly impact their quality of life including their independence, relationships, interests, and profession. Patients often experience a multitude of emotions and feelings throughout their disease process.

In terms of long-term treatment, patients with ESRD require renal replacement therapy (RRT) to sustain life. While there are more options for RRT than ever before, each option has associated risks and benefits, and must be fitted to the individual. Patients disproportionately choose in-center hemodialysis requiring the patient to receive treatment at a center within their community. Unfortunately, the truth is that the dialysis schedule is demanding, and the patient will spend a minimum of ten hours per week connected to a dialysis machine to remove waste and extra fluid from their body. Following the in-center hemodialysis procedure patients often feel exhausted and will require several hours to recover. From initiation through the continuation of RRT, patients are faced with many challenges that can lead to decreased quality of life and depression. In fact, approximately 25% of the ESRD population suffers from depression (2).

When patients require RRT, a strong nurse-patient relationship commences. Patients spend several hours a week with the nurse over many months to years while receiving dialysis. Upon initiation and continuation of RRT, patients often feel their quality of life has been negatively affected and fear expressing these feelings to their family could impact their relationships. The dialysis nurse bears witness to the discomfort patients experience, from the physical side effects of the procedure (nausea, hypotension, cramping, dizziness, tiredness) to the psychosocial challenges (relationships, transportation, finances, diet, lifestyle). Many dialysis nurses experience moral distress related to the burden dialysis places on very sick patients. The nurse often serves as a confidante to the patient while observing the patient’s burden and feels helpless as to how to support the patient in their very real distress. The moral distress of the nurse could be reduced with the addition of a palliative approach to dialysis care for the patient.

To further validate the concept of moral distress among dialysis nurses, recently a patient with late-stage dementia and co-morbidities, including chronic respiratory failure with a permanent tracheostomy and a permanent percutaneous endoscopic gastrostomy tube, was initiated on hemodialysis. The patient had a central venous catheter as their primary access and experienced infections due to adherence issues with catheter care protocols. Due to baseline confusion, the patient required restraints around the clock to avoid dislodgement of devices. Upon arrival to dialysis, the staff would medicate the patient with benzodiazepines to safely and adequately perform the dialysis procedure. Additionally, the patient resided in a nursing home and had passive involvement from family. The dialysis nursing staff felt a significant amount of moral distress while caring for this patient as they felt continuation of dialysis was causing more harm due to concerns for the patient’s safety and malalignment with the patient’s goals of care. The dialysis nurses advocated for advanced care planning for this patient to reduce pain and suffering. In short order, a palliative care consult was placed and ultimately the decision was made to discontinue dialysis. This case is one of many that come through the dialysis department every year and is emblematic of the moral distress among nurses and demonstrates the nurse’s role as a patient advocate.

Although the National Kidney Foundation (NKF) recognizes the need for board certified palliative care providers to be a part of the patient’s . this population. The rate of palliative care consults among patients diagnosed with CKD and ESRD is substantially lower than patients diagnosed with cancer or dementia (3). A board certified palliative care provider that is trained to care for individuals diagnosed with a serious chronic illness would be a tremendous addition to the patient’s care team by enhancing the patient’s quality of life and reducing suffering.

The need to formalize a palliative approach to dialysis care has received recognition and endowment by many throughout the healthcare industry. The use of palliative care for patients with ESRD remains an area of opportunity to greatly improve quality of care. Healthcare organizations must work together to delineate resources, create processes, and substantiate expectations for advanced care planning and palliative care support for patients with ESRD.

Ashley Rotella, BSN, MSN is the Hemodialysis and IV Resource Nurse Manager at UMass Memorial Medical Center and a DNP student at UMass Chan Medical School, Tan Chingfen Graduate School of Nursing.

REFERENCES

1. National Institute of Diabetes and Digestive and Kidney Disease. (2021, September). Kidney disease statistics for the United States. Kidney Disease Statistics for the United States | NIDDK (nih.gov)

2. Kimmel PL, Cukor D, Cohen SD, Peterson RA. Depression in endstage renal disease patients: a critical review. Adv Chronic Kidney Dis. 2007;14(4):328-334. doi: 10.1053/j.ackd.2007.07.007

3. Abdel-Rahman, E., Metzger, M., Blackhall, L., Asif, M., Mamdouhi, P., MacIntyre, K., Casimir, E., Ma, J., & Balofun, S. (2021). Association between palliative care consultation and advanced palliative care rates: A descriptive cohort study in patients at various stages in the continuum of chronic kidney disease. DOI: https://doi.org/10.1089/jpm.2020.0153