Art Buchwald was a famous newspaper columnist! He even won a Pulitzer Prize, he was funny and he also had end-stage kidney disease. In 2007 he made a decision to stop having dialysis. Told that he had at most days to a few weeks to live he enrolled in a hospice. More than a month later he was not dead; actually he was feeling much better so he left hospice and lived almost a year, during which he wrote a final book Too Soon to Say Goodbye. (See link below to learn more about Art Buchwald)
Susan Wong and colleagues just published “Care Practices for Patients with Advanced Kidney Disease Who Forgo Maintenance Dialysis” in JAMA Internal Medicine. Their findings were
“It was unusual for clinicians to readily accept patients’ decisions. Clinicians tended to repeatedly question this preference over time, deliberated about patients’ competency to make this decision, used a variety of strategies to encourage patients to initiate dialysis, and prepared for patients to change their minds and start dialysis.”
When you are sick and tired, and not an expert, you need your doctor to help you make difficult decisions and support you through what will be a difficult time. Dying is never easy and there is good evidence that dying from renal failure is painful and distressing…. far from the good way to die some people claim.
Patient-centered care and the “triple aim” of improving patients health, experience of care and reducing cost requires conversation that is supportive and explores the person’s goals of care. Importantly, both people on dialysis and those who decline or stop their dialysis need help to live well and manage symptoms and feel supported. They need palliative care. This is not just a problem for people with kidney disease. This is a problem for all of us, patients, families and providers negotiating serious illness.
Art Buchwald NPR https://www.npr.org/templates/story/story.php?storyId=5249437