Nephrologists should join patients in embracing the ‘no dialysis’ option
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I offer medical management without dialysis in cases of advanced chronic kidney disease, but in my early years practicing nephrology, I rarely brought this option up to my patients.
Mostly, I hoped they would respect my thoughts about whether dialysis was right for them. However, after observing that almost all patients chose to start dialysis, I just went with the flow.
Following this path of least resistance left me burned out; I knew something was not right. Must end-stage kidney disease mean dialysis in every case, regardless of the patient’s prognosis and goals for care? I felt moral distress.
Goal-concordant care
Then, I learned about goal-concordant care. This approach means patients should receive treatment that respects their values, preferences and goals. It starts with listening. The clinician intently listens and explores what is important to patients, and with that in mind, helps them picture the impact of various choices on how well they could achieve their goals.
My expertise as a nephrologist is valuable to patients and their families because I have the training and experience to help them explore each scenario. I get to lead them through what is realistic and what they will likely obtain from those treatment options, with a focus on how well we can achieve their expressed goals.
One case sticks out in my mind. Mr. C. was 51 years old with stage 5 CKD, cirrhosis of the liver and ischemic cardiomyopathy. He was not a candidate for a kidney transplant and he had been refusing preparation for dialysis for the last 6 months.
Upon asking about his condition, he said he understood his kidneys, liver and heart were not working well, and he felt tired and bad all the time.
I asked him what his most important goal was, and he said, “I do not want to feel bad.” He asked if dialysis would resolve his liver and heart conditions and make him feel better. I said it was unlikely dialysis was going to help him feel better.
I explored his understanding of advanced CKD treatment options, and he said he did not want dialysis. When I told him we could manage his ESKD without dialysis, his passiveness disappeared; he became more involved. He told me he appreciated that I was not pushing him to do dialysis. I told him and his wife that this was going to be an ongoing discussion during our follow-up, and I was going to support any decision he made.
My patient, his life
After my encounter with Mr. C. and his wife, I was surprised to see his wife’s anger and her intense need to talk for him and argue with the nurses went away. She was relieved that he was not going to feel pressured to keep his appointment for a vascular access. She cried and felt relieved.
I suggested a family meeting with the patient’s mother and children who were also trying to talk him into starting dialysis. The family meeting gave me the opportunity to help him express what was important to him. His family had the chance to hear his choice, his reasons and his wishes. As a result, they left sad but supportive of his choice.
Keep options open
Patients need to hear from their nephrologist that active medical management without dialysis is a treatment choice along with home and in-center dialysis and transplantation. Many times, nephrologists present a choice, colored by their own biases. A biased presentation would make such a choice sound like the path toward death. I challenge all of us to consider the idea that dialysis, too, is part of a path toward death.
Likewise, patients should not be surprised to find out that no path offers immortality. With this perspective, patients can choose a path, guided by their values and wishes and what they hope to achieve in their future.
They may change their minds. Recognizing and supporting them through this process is exhausting at times but rewarding. I remind myself that patients’ goals of care change with individual experiences, so it must be a flexible process.
What the patient wants
I understood this was not about me and that dialysis did not offer, from Mr. C’s perspective, a benefit. It may be hard to imagine a 51-year-old patient making this decision – that is young. However, I was able to individualize care and able to “read” his behavior during the prior 6 months. He was “acting up” because we were not listening to him. He had made his decision. We had labelled him as a “non-compliant,” because he was refusing to get his access placed.
We know comorbidities are associated with worse survival on dialysis and patients with multiple severe comorbidities, like Mr. C., are not likely to derive a significant benefit from dialysis regardless of age. Dialysis was not going to change his underlying prognosis from liver and heart disease.
In the end, patients need to make their own choices. That will not happen if we do not explore their priorities and how their families influence their choices. We can recognize, despite our knowledge and recommendations, patients will want to try things with which we may disagree. Ultimately, we must respect their choice.
I recognize this journey with my patients is unique to each of them. I recognize a duty to change the de facto care path on which advanced CKD invariably leads to dialysis. I am compelled to have a conversation with them regarding their individual goals and which potential paths we can take. I have to disclose to my patients that medical management without dialysis exists.
That may be the only way they know they have permission to choose it.
- For more information:
- Catalina Sanchez-Hanson, MD, is a nephrologist in private practice in Dallas. She can be reached at sanchezc@dneph.com.
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