Nephology Now and Ahead: Patient Choice, Shared Decisions, and Innovation

Priority #3: ACCELERATE INNOVATION and expand patient choice. We need to develop future leaders in nephrology who can move the field forward scientifically and serve as advocates for our patients and our specialty.

When it comes to patient choice in kidney care, there are two equally important considerations. First: ensure patients understand their choices in terms of what is actually feasible. That includes home dialysis, peritoneal dialysis, in-center dialysis, transplant, or conservative kidney management. Second: match a treatment choice, as best as you can, to the patient’s individual priorities when it comes to life goals, values, and quality of life.

Shared decision-making—a process where the physician and patient discuss the patient’s priorities and prognosis—is the basis of any critical decision in our profession. The process is a two-way street where the physician is the expert on medical prognosis and options available for the patient, and the patient (or care partner) is the expert on values and living with the disease.

Whichever option is chosen by the patient, we as the providers have to understand that the process is iterative and patient priorities can change as their disease progresses. For example, I have patients who say, “I would never want to live if I couldn’t walk.” However, this outlook may change if the patient is confined to a wheelchair. I’ve also seen patient’s views transform when grandchildren are born, or other life milestones are approaching. 

Some individuals want and need a recommendation from their physician. In this scenario, it is imperative that the physician understands the patient’s values to make an informed recommendation. This is done through a holistic exploration of the patient and by discussing what is important to them, as well as their living situation, their support, and their notion of quality of life. As physicians, we cannot order or demand a patient’s behavior or decision, but we can be informative and supportive to help them make good choices and sensible plans for their future.

I am excited to be participating in ASN’s “ We’re United 4 Kidney Health ,” campaign, inviting kidney health professionals to be part of a movement to shift our focus from kidney failure to kidney health and unified behind four priorities, including the need to accelerate innovation and patient choice.

A simple and significant question to ask patients is, “What makes a day good for you?” In that one question, we can learn so much about what is important to an individual. To understand the many dimensions of a patient, I explore their spirituality, their family, their quality of life, and their priorities for the years ahead. The shared decision that we eventually reach often depends upon the life story. 

I care for young patients who have experienced so much medical hardship that they choose to no longer undergo further medical procedures. In contrast, I care for older patients who choose to live at any level of quality in order to see their grandchildren grow up. For the most part, people’s motivations are different and often based largely on their individual experience and their present health condition. 

In order to achieve shared decision-making, it is helpful to work with interdisciplinary providers, including chaplains or social workers. As a palliative care physician and a nephrologist, I often schedule patient visits just for advanced care planning and try as best possible to make them interdisciplinary.

On the therapeutic innovation front, we now have SGLT2 inhibitors, an expansion of transplant choices, on-going clinical trials for treatment of glomerular diseases, as well as the increased role of genetics in treating and diagnosing kidney diseases. However, innovation is not limited to research. As a field, we are also recognizing the importance of expanding our training for fellows to not only invest in science and research, but to effectively communicate findings so that science can translate into policy change. This is key to developing future leaders in nephrology who can move the field forward scientifically and serve as advocates for our patients and our specialty.

When practicing advancements in kidney health, we are treating the patient as a whole person. That is the foundation of the Hippocratic oath. And that is what makes my career so rewarding and fulfilling:  Bringing relief, hope, and support to people’s lives every day.