Person-Centered Approach to Deciding on Long-Term Dialysis
Denise Eilers, 2709 Middle Road, Davenport, IA 52803. Email: GeneDeEi@aol.comI appreciate the opportunity to offer comments on “Characterizing approaches to dialysis decision-making with older adults” by Ladin et al.(1). My thoughts reflect a somewhat unique perspective on the basis of my dual roles as a registered nurse and a former home hemodialysis care partner.
In 1967, my husband failed his Army draft physical and was subsequently diagnosed with poststrep GN. Before starting dialysis 13 years later, his physician kept a vigilant watch on my husband’s BP, laboratory values, cardiac status, and self-reported symptoms. When his CKD progressed to stage 4, he was referred to the University of Iowa, where we were given extensive information about modality options. More importantly, the nephrologist asked about our lifestyle, including employment status, family commitments, leisure activities, and our long-term goals. The majority of the discussion centered on which treatment would accommodate our busy lifestyle. As a result, the nephrologist recommended that we strongly consider home hemodialysis.
Starting dialysis can be difficult even under the best circumstances, but because of the information and guidance that we received, my husband thrived. During 25 years of home hemodialysis, he worked full time as a CPA, played golf, traveled, and volunteered in our community. Together, we raised our son, socialized, and restored an old home. After my husband’s untimely death in 2004, I have often reflected on our choice, wondering how it would have been different if we were older, less prepared, or unengaged in the decision making. Surely, our lives would have been quite different.
Ladin et al.(1) identified four distinct approaches: paternalistic (reliance on the physician expertise with less patient input), informative (physician as technical expert but with no influence on patient choice), interpretive (physician-patient interactions about values and goals guide treatment choice), and institutionalist (influence of practice culture and norms).
Although under specific circumstances, there may be some place in nephrology for each of the four approaches, the informative and especially the interpretive approaches must increasingly become the norm. During 40 years of nursing, I have encountered each of the described approaches and have seen a slow drift toward the informative and interpretive approaches.
The authors also describe the five themes that emerged: patient autonomy, engagement and deliberation, influence of institutional norms, importance of clinical outcomes, and the physician role.
Real patient engagement is key to successful discussions about all treatment choices.
For patients and their family, choice is about life goals, which are ever-changing targets. Consider that the goals of a young employed parent are different from those of a newly retired empty nest couple yearning to travel or an 80-year-old residing in assisted living. Conversely, there is the 80 year old who goes skydiving to celebrate being an octogenarian or the 70-year-old who may be raising grandchildren. Each patient is an individual, and assumptions are detrimental. As the authors point out, being a facilitator or navigator may produce many more successful discussions about treatment choice, including conservative management.
It is not surprising that the authors found that only one third of the participating nephrologists discussed conservative management with older adults and that those who did so followed the interpretive or informative model. Their findings show a need to move these difficult conversations upstream so that when emergency or other serious situations do occur, there is a clear understanding of the patient’s wishes. Broad-ranging advance care planning as opposed to simply executing advance directives must take place as an integral part of overall care from the very beginning of the doctor-patient relationship. Life health plan might be a good phrase to describe these ongoing discussions.
Above all, this study is especially timely given the huge number of aging baby boomers. That generation, of which I am a member, has been described in various terms, such as goal oriented, self-sufficient, questioning, and involved. The sheer numbers of these older nontraditional adults will make it necessary to move the needle further toward shared decision making as in the interpretive model. This study offers a guide from which to develop tools to facilitate discussions.
I also agree with the limitations of the study. Including a greater percentage of nephrologists in community-based practices and creating a balance between men and women might produce different results. There was also little mention of care partners and families who have such a profound effect on patient choice. Lastly, it would be enlightening to survey patients regarding the approach that they prefer.
Dr. Atul Gawande, an adviser to the Conversation Project, has said: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really, it is larger than that. It is to enable well-being. And well-being is about the reasons one wants to live.” From a nurse and family member, I totally agree!
D.E. is a volunteer member of the following organizations: Home Dialyzors United, Board of Directors, Kidney Health Initiative, Patient and Family Partnership Council (PFPC), and National Kidney Foundation (NKF): NKF Iowa/Nebraska Board of Directors and Kidney Living Editorial Advisory Board.
Published online ahead of print. Publication date available at www.cjasn.org.
See related article, “Characterizing Approaches to Dialysis Decision Making with Older Adults: A Qualitative Study of Nephrologists,” on pages 1188–1196.
Copyright © 2018 by the American Society of Nephrology
Ladin, et al.: Characterizing approaches to dialysis decision-making with older adults. Clin J Am Soc Nephrol 13: http://cjasn.asnjournals.org/content/early/2018/07/25/CJN.01740218, 2018