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Person-centered approach, infrastructural changes to health system needed for patients who forgo dialysis
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In a published study, nephrologists identified two primary requirements for providing successful conservative care to patients with advanced chronic kidney disease. These included a greater focus on the individual patient and the broader creation of a health care system that supports this choice.
“In the United States, it is relatively unusual for patients with advanced CKD to choose conservative care, and very few dedicated services to support these patients exist in this country,” Susan P. Y. Wong, MD, MS, assistant professor in the division of nephrology at the University of Washington, and colleagues wrote. “The available literature suggests that most U.S. nephrologists have limited experience caring for patients who choose not to start dialysis and are not accustomed to offering a conservative care option to patients faced with the prospect of kidney failure. Although there is growing recognition of the importance of conservative care within the U.S. nephrology community, nephrology training and continuing education programs and clinical practice guidelines offer little instruction in this area.”
Following a study, also led by Wong, that used medical record notes to explore how and why clinicians made the decision not to initiate dialysis, researchers conducted interviews in an effort to describe the practice approaches of 21 U.S. nephrologists who had experience providing conservative care to patients with advanced CKD (mean years in practice, 20.2 years; 14 worked in academic practices, 15 in urban areas).
From these interviews, they identified two themes that reflected the nephrologists’ approaches to conservative care, which were categorized as either person-centered or improvising a care infrastructure.
The person-centered approach consisted of ensuring decisions fit with patients’ goals and values by having conversations and building relationships. In addition, these nephrologists presented dialysis as a choice, providing patients with both the benefits and harms of the treatment while framing the option to forgo dialysis in a “positive light.”
In the second identified theme, improvising a care infrastructure, nephrologists described how the health systems in which they practiced were limited in the ability to accommodate patients who chose not to initiate dialysis. To support the option for patients to choose conservative care, these respondents served as consultants in renal and/or palliative care clinics. Here they were able to co-manage patients with their primary nephrologist, helping with complex medical decision-making, advance care planning and symptom management. All the nephrologists interviewed said it was crucial that they continue providing care to patients even if the decision to forgo dialysis was made and all expressed frustration with the lack of support systems to assist with conservative care. Some ancillary services recommended by nephrologists for patients who decided not to initiate dialysis included primary care, home health, social work, nutrition, palliative care and/or hospice and chaplaincy.
“Prior qualitative studies highlight that whereas clinicians may think they have their patients’ best interests at heart, their recommendations to start dialysis may conflict with patients’ own expressed goals and preferences,” the researchers wrote. “The nephrologists interviewed for this study described adopting a person-centered approach to care that is in many ways antithetical to the traditional disease-based framework that characterizes much of nephrology practice. It is therefore not surprising that many believed that they were working at the margins of mainstream nephrology practice and the wider health system ... Far-reaching cultural, practice and infrastructural changes [will] be needed to support more widespread delivery of conservative care in this country and the diverse needs and changing goals of U.S. patients with advanced CKD.” – by Melissa J. Webb
Disclosures: Wong reports teaching honoraria from VitalTalk and funding from the National Palliative Care Research Center and the VA National Center for Ethics in Health Care. Please see the study for all other authors’ relevant financial disclosures.
Perspective
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Leanna Tyshler, MD
The other night, I was talking to a respected and very experienced nephrologist at a social event. What he said resonated with my own perception of being a nephrologist. He noted that for him, the most fulfilling part of being a doctor is to hear personal stories from his patients, as well as to share anecdotes from his own life with his patients.
I strongly believe that when we connect with our patients, when we try to understand their values, their beliefs [and] their daily routine, only then can we really help them to make difficult decisions.
Choosing the right treatment at the right time for a patient with advanced kidney disease is not a simple task. Whether it is preparing to start dialysis, initiating a transplant workup or considering medical management without dialysis, these are all very challenging and personal decisions.
It is not surprising that one of the two big themes that emerged from the qualitative analysis in Wong and colleagues’ [study] of nephrologists’ experiences with conservative management of patients with kidney failure is “person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients … and being flexible to the changing needs, values and preferences of patients.”
Patients may choose medical management, but then change their preference later on as the disease progresses or circumstances change. Though it could be frustrating for physicians, we have to remember that patient needs do shift overtime. Supporting patients in choosing the right treatment at the right time is our duty that we could only fulfill if we understand and know our patients well.
The second big theme explored in Wong and colleagues is the lack of infrastructure in our current health care system that could support patients and providers if they choose medical management. Palliative care and hospice resources are very limited for any patient with advanced kidney disease or kidney failure, whether they choose dialysis or medical management without dialysis. At least once a patient starts dialysis, they have access to a social worker, a dietitian and a care manager. However, our patients have very limited resources during the critical time of understanding their disease and choosing the right treatment. It often falls on nephrologists and their staff to fulfill various gaps. One nephrologist commented to me, “One of the challenges to medical management of kidney disease is that it really, in my mind, requires frequent visits … that’s how I keep my late-stage sick people out of the hospital. There are practices that are not built for that … A nurse practitioner, a social worker [and] a dietitian, we definitely don’t have that set up.”
I agree with the authors’ conclusions that “far-reaching cultural, practice and infrastructural changes would be needed to support widespread delivery of conservative care in this country and the diverse needs and changing goals of U.S. patients with advanced CKD.”
Nephrology News & Issues Editorial Advisory Board Member
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