As the primary conveners of the kidney community throughout the Pacific Northwest, the Northwest Kidney Council hosts a series of “Council Conversations” with our partners from Oregon and Washington that provide an opportunity to discuss the latest updates from our various organizations and hear from a guest speaker.
This week, the Northwest Kidney Council was pleased to host Dr. Amaka Eneanya, head of strategy and operations at Fresenius Medical Care’s global medical office, for an in-depth discussion on the importance of palliative care for the kidney community. As double board certified in both nephrology and palliative care, Dr. Eneanya brought a unique expertise and perspective to the well-attended conversation. Her background is in academia and focuses on health literacy, health equity, how patients understand their prognosis and the advanced care planning process.
In addition to many of our partners, we were pleased to welcome members of the Washington State Hospice & Palliative Care Organization to the conversation as they are on the front lines of providing care to patients daily.
What are common misconceptions of palliative care?
Dr. Eneanya began the conversation by defining palliative care and addressing some common misperceptions and the need for a “cultural shift in the field.”
“Palliative Care is defined as improving quality of life for patients along the disease spectrum. The misnomer is that palliative care is end of life care, and how we can improve quality of life for the last six months of life. We know that is significantly too late. We should be having shared decision making very early in the process and need to include the social support systems and document the patients’ goals and values. As a resident I made the decision to focus on palliative care in nephology because I would see [critically ill] patients in the ICU and their families were just learning about their prognosis and decisions about end of life in the ICU which is the worst setting for that in my opinion. Shifting the conversation earlier is something the community needs to do. But not everyone is ready for it. There needs to be a cultural shift in the field to operationalize what we know is best practice.”
When should kidney patients start palliative care?
Kidney disease, unlike other illnesses, often has no outward side effects or systems. The metrics that doctors use to know when to bring in a palliative care team often don’t apply to the kidney community. Knowing how and when to engage a palliative care team can be difficult.
“For the CKD population, anxiety is often a driving factor. It was the advanced care planning discussion. Anxiety and decisional uncertainty about which course [of treatment] to pursue. The palliative care physician often stepped in because the nephrologists didn’t feel as comfortable having these conversations and addressing the patient’s needs. It takes some skillset to pause when talking to patients. To acknowledge they have the right to feel scared or angry and work with them and be on their side. There are skills we can teach the workforce to support the patient. It needs to be a team effort.”
What are some emerging trends in palliative care?
Dr. Eneanya acknowledged that the practice of palliative care hasn’t changed dramatically in recent years, but how the delivery of care has shifted as technology has improved.
“Over the pandemic we saw the increased use of telemedicine and meeting the patients where they’re at. This is really powerful. It can bring the family into the conversation with ease. And it is a method we all should embrace.
Another thing that is becoming a standard of care is Advanced Care Planning completed within the first 90 days of a diagnosis. We’re working to update the CMS intake form to help track palliative metrics and address gaps in care.”
How can public policy improve palliative care?
Speaking to a policy-centric audience, the conversation shifted to understand how public policy can improve care for patients. Dr. Eneanya addressed some challenges within the system.
“Care delivery is set up so that it is not multidisciplinary when it comes to other specialties. That includes palliative care. The way the models [are structured] – reimbursement models and others – are barriers to collaborative and multidisciplinary care. Telehealth may be a way to work around that, if we can think of different processes and ways to incentivize referrals for integrated care. Another big issue is the conflict of the Medicare hospice benefit with the ESRD benefit, and having to withdraw dialysis in order to receive hospice care. That has been a long-standing issue. People have been fighting for this for a long time. I was fortunate to work on Rep. Blumenauer’s proposal to cover treatments with hospice care. Bills like that will be incredibly helpful. We should have done this a long time ago.
We also need to think about palliative dialysis and reexamine the quality improvement metrics that are used to determine reimbursement. If your goal is comfort it shouldn’t be a financial ding to providers.”
What do kidney patients and their families need to understand about palliative care?
Before wrapping the conversation, Dr. Eneanya shared a few thoughts, directly aimed at patients and their families.
“Palliative care can be supportive for you and your family members. It’s not just about the patient. It’s also support for the health care team and can alleviate burnout. There are resources for your family. You don’t have to do this on your own.
The other thing I would say, there are definitely racial disparities. We know racial and ethnic minorities are distrustful of the healthcare system and less likely to receive this care. I would like all patients to know about these disparities, in particular those groups affected by this disparity: Black patients, Hispanic patients, Native American patients. There have been several studies in the field of nephrology that show your quality of death and your quality of life at the end of life are significantly worse than for other groups. Let’s talk about the benefits of this for you and your family and build a trusting relationship where you’re able to receive and accept it.”
* * *
The full recording of the conversation with Dr. Eneanya is below, including a lively Q&A session with our partners in attendance. If you are interested in learning more about the Northwest Kidney Council or attending our next council meeting, sign up to receive the latest news.