The kidney care arena is pervaded by curative approaches, and more conversation is needed about pathways to palliation.
This is the crux of a recent report from the Center for the Advancement of Palliative Care (CAPC) and the National Kidney Foundation (NKF).
“The dialysis population is like being on a treadmill [with a primary focus on numbers and measurements],” Allison Silvers, chief health care transformation officer at CAPC, told Palliative Care News “While there is a healthy amount of conversation between oncologists and palliative care specialists, this dialogue is lacking between nephrologists and palliative care.”
New programs such as NephroTalk — an initiative developed by Jane Schell, a palliative care instructor and nephrologist at the University of Pittsburgh — are spurring exchanges that are leading to new insights around treating such conditions as chronic and end-stage kidney disease (ESKD). The curriculum is designed to educate people from medical staff to patients on conservative care options.
The CAPC-NKF report notes that, especially for those patients with comorbidities, dialysis can create and exacerbate symptoms such as fatigue, pain, insomnia and anxiety, to name a few. Where the approach has typically been led with an either-or mindset, Silvers calls for seeing the bigger picture where the possibilities exist along a much wider spectrum.
“There is very little evidence for the efficacy of dialysis as opposed to conservative kidney management,” Silvers said.
She pointed out that patient advocacy and family caregiver awareness were suffering as the result of the lack of exploration between palliative care and nephrology specialists. Options not being sought, and patients are not receiving emotional and spiritual support.
When communication is inadequate, it can deepen inequities for underserved populations, Silvers said. More interaction and a wider array of options could lead to better options and outcomes.
A paradigm shift is needed in how we approach care for patients with ESKD, according to Dr. Holly Kincicki , associate professor at Mount Sinai Health System’s palliative and nephrology division.
“There needs to be a normalization of not pursuing dialysis and not assuming that it is the only path when it comes to EKSD patients,” Kincicki told Palliative Care News.
When palliative care is part of the treatment equation, patients often experience better pain management and fewer hospital admissions, which are particularly detrimental to aged EKSD patients.
However, Kincicki said she is optimistic.
“More nephrologists are taking a step back and seeing the larger picture of quality of life and comorbidities, even compared to just five years ago,” she said. “Fewer practitioners are going in with blinders and engaging in mere checkbox thinking.”
Kincicki noted that a “palliative dialysis” approach is creating more comfort for patients with symptoms like nausea and is not the prior numbers-led methodology. By informing patients and their family caregivers of their options, treating all symptoms, focusing on quality of life and creating more collaboration between specialties, better care will be possible, she indicated.
With the awareness created by the joint CAPC-NKF report, other initiatives and organic conversations, Kincicki said she hopes that patients and families “will feel empowered to ask tough and uncomfortable questions and that medical professionals will be able to have more candid conversations about what life might look like beyond a lab and numbers focus.”
