It is very difficult to judge people who decide that they want to end their lives when they are afflicted with a terminal disease that is going to lead to a miserable death. Most people with terminal diseases can be allowed to die naturally if interventions are withheld and adequate comfort measures are taken. For example, people with glioblastoma (grade IV brain cancer) are usually on high doses of steroids. If the steroids are acutely withdrawn with the permission of the patient and family and sedation is administered, death follows quickly. We should never be too quick to judge others without spending some time in their shoes.
Patients with kidney failure should be fully informed about their options for treatment, including the option to choose no treatment or to stop treatment an allow natural death to occur. This is not an easy decision to make, but may be one a patient may make in conversation with family and spiritual leaders if the burdens of dialysis exceed its benefits. In my opinion, when a patient decides to forego dialysis, they should be offered referral to hospice and palliative care services for comfort care and support. Here’s a website that discusses this option and support services.
That said, I believe it’s important for nephrologists and dialysis personnel to make sure that they’ve identified and addressed as much as they can treatment-related problems or problems related to living with kidney failure that may be contributing to the high burden. This is why I believe it is so important to ask patients to complete the KDQOL-36 and explain to them its value. This survey can identify where functioning is impaired, what symptoms patients may have that they didn’t think to report to the “kidney team,” as well as what burdens they feel and how dialysis affects other areas of their lives. Having information on scores and how patients answered individual questions as well as information gained from taking the time to talk with patients can help the team address their efforts at identified problem areas to improve the patient’s quality of life. This document helps to explain the survey and its value.