"To Dad, hemodialysis represented an existential threat to his dignity, independence and quality of life as he defined it. In this context, his decision against dialysis was understandable. But because of a system-wide lack of information, the last leg of his life’s journey was unexpectedly turbulent and stressful for him and his family.
The first step toward ensuring a better end-of-life experience in patients with end-stage kidney disease who decide against dialysis is to recognize that research in assessing the symptom burden and improving the quality of life of such patients is sorely needed. In the meantime, patients and their caregivers should be fully informed of the myriad symptoms that may ensue as uremia worsens and they should be counseled that a “peaceful death” may never materialize.
For these patients and their families, preparing for the expected should not be an elusive goal."
When a doctor’s father rejected dialysis, he didn’t expect what happened
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