Patients with advanced stages of chronic kidney disease (CKD) face decisions regarding initiation of maintenance dialysis, including whether and when to begin treatment. Dialysis is considered a life-prolonging intervention for patients with advanced CKD; however, the therapy does not always deliver the anticipated effects of lengthening life and restoring health and patient quality of life. Particularly among older patients, the demands and potential burdens and complications may outweigh the benefits of dialysis therapy.
For patients with advanced CKD in Australia, Canada, and some countries in Europe and Asia who do not opt for dialysis treatment, care models to provide management of symptoms have been created. Data from such programs suggest that for patients ≥75 years of age who have a high burden of comorbid conditions and functional impairment, there is little difference in life expectancy and quality of life between initiation of dialysis and conservative care management.
Conservative care management is relatively uncommon in the United States. There are few dedicated services for the support of patients who opt to forgo dialysis, and nephrologists in the United States have limited experience caring for that patient population. Susan P.Y. Wong, MD, MS, and colleagues recently conducted a qualitative study to gain a clearer understanding of emerging approaches to conservative care in the United States. The study population included US nephrologists with experience caring for patients with advanced CKD who had elected to forgo dialysis. Results of the study were reported in the American Journal of Kidney Diseases [2020;75(2):167-176].
The study used grounded theory methods; data collection and analysis occurred simultaneously and the concepts that emerged during the analysis were developed and refined to collect subsequent data that elaborated on the concepts. The researchers employed a purposive snowball sampling strategy that enabled the targeted recruitment of nephrologists in the United States with experience caring for patients with advanced CKD who decided not to initiate dialysis. Nephrologists were recruited from a range of geographic regions, practice settings, and educational backgrounds.
Participating nephrologists completed a survey that included questions on demographic characteristics and clinical practice. Following completion of the survey, participants were interviewed, either in-person or via telephone, by one of the researchers; the interviews were conducted between November 2017 and June 2018. The interviews used a semi-structured interview guide that was designed to elicit information regarding the nephrologist’s approach to, experiences with, and perspectives on caring for patients with progressive advanced CKD who had chosen not to receive dialysis treatment.
Of the 31 nephrologists approached, 21 provided informed consent and participated in a semi-structured interview. The mean interview duration was 55.0 minutes. The participating nephrologists practiced in 16 different states and had been in practice for a mean of 20.2 years. Fourteen of the 21 worked in academic settings and 15 reported working in an urban area. Patients who opted to forgo dialysis were managed with ancillary services to varying degrees; services used included primary care, home health, social work, nutrition, palliative care and/or hospice, and chaplaincy.
Qualitative analysis of the interviews yielded two dominant and inter-related themes related to the nephrologists’ approached to conservative care: (1) a person-centered approach to care, and (2) improvising a care infrastructure.
The person-centered approach included orienting decisions to the things that mattered most to each patient, describing dialysis as an explicit treatment choice, being mindful of sources of bias in medical decision-making, and being flexible in accommodating patients’ changing needs, values, and preferences.
The participating nephrologists viewed decisions regarding dialysis within a broader context of patient goals and values rather than based on conventional biomarkers of kidney disease. The clinicians mentioned engaging patients in building a relationship and getting to know them as “people.” The clinicians used what they learned through those conversations to help inform discussions about treatment options. They focused on supporting patient choices in the decision-making process, and looked to the patient to determine what was most important in formulating a treatment plan.
The clinicians stressed the importance of presenting dialysis as an explicit treatment choice, including informing the patient about both the harms and benefits of treatment, as well as ensuring that the patient was aware that dialysis could be declined. Various strategies for raising the option of forgoing dialysis were cited. Some clinicians presented the opt-out option routinely along with other options; others were more selective, and only mentioned opting out with select patients based on a sense of who might benefit from a conservative management approach.
The participating nephrologists described the need to improvise a care infrastructure that recognized the challenges of conservative care management within health systems not configured to support that model. All of the clinicians reported being committed to caring for patients for the duration of their illness and noted it was important not to abandon patients because they had opted not to receive dialysis.
In citing limitations to the current study, the researchers noted that the nephrologists interviewed did not comprise a representative sample of US nephrologists and likely did not reflect practices of the wider nephrology community; further, the results are based on self-reported practices.
The researchers said, “In conclusion, interviews conducted with a select group of US nephrologists who are early adapters of conservative care suggest that far-reaching cultural, practice, and infrastructural changes would be needed to support more widespread delivery of conservative care in this country and the diverse needs and changing goals of US patients with advanced CKD.”
Takeaway Points
- Researchers conducted a qualitative study to examine practice approaches of nephrologists who provide conservative care for patients with advanced chronic kidney disease (CKD).
- Semi-structured interviews with 21 nephrologists yielded two themes for delivery of conservative care: (1) person-centered practices; and (2) improvisation of a care infrastructure for this patient population.
- Managing patients with advanced CKD who opt to forgo dialysis presents a challenge within healthcare systems that are not configured to support those patients.
