What Happens When You Opt Out of Dialysis?

If quality of life is the most important objective for a terminal patient -- and for doctors, caregivers, and family members -- during the end stages of the dying process, how are the pros and cons of dialysis weighed? Will the patient be burdened by dialysis or experience greater discomfort without it?

GeriPal does a good job of examining a new study in the Journal of Pain and Symptom Management that looks at quality of life for those who deny dialysis. It's an intriguing and fairly thorough study that compares renal disease suffers with cancer suffers -- but nonetheless, doesn't give us a clear answer. And such studies may never conclusively do so. The more time I spend watching how we manage emotional and physical pain, the more I better understand how relative pain is. As individual as we are in life and taste, so too are we individual in our definitions of pain. But a study of this sort does go a long way to take dialysis off the path of immediate response for terminal patients and to help us think about what matters: the patient's comfort.

Writes Alex Smith:

What are the clinical implications and remaining questions?

• I usually tell patients and family members that dying of renal failure is "peaceful." I say, "you generally become more and more drowsy, and drift off into a sleep from which you don't wake." This article challenges those words. While I think the final hours and days may resemble that trajectory, the last month as a whole is actually a time of relatively high symptom burden. Clinicians should attend to these symptoms as aggressively as they do for patients with advanced cancer.
• The degree to which these symptoms were due to renal failure or co-morbid conditions is not clear. These patients were not young healthy folks who refused hemodialysis, they refused because they were elderly (mean age at death 81) and had a high burden of chronic conditions like heart failure. Comorbid conditions may be as great a source of suffering in the elderly as the terminal condition (a very Geriatric perspective).
• We still have no randomized controlled trial of hemodialysis vs. no hemodialysis for elderly patients with multiple chronic conditions. We don't know if "conservative management" (no dialysis) is actually associated with a shorter time to death as is widely assumed. We don't know if hemodialysis is associated with a greater burden of suffering, or if (maybe) the trade-offs in terms of reduction in swelling and shortness of breath by using dialysis are worth the hassle, risks, and time spent hooked up to the machine.

Read the whole post at GeriPal.

Removal from Dialysis or Murder?

An interview at Renal and Urology News with Dr. Lewis M. Cohen, author of the new book No Good Deed: A Story of Medicine, Murder, Accusations, and the Debate over How We Die. The book recounts the case of two nurses who were charged for murder for removing a patient from dialysis. Here's a clip:

During a series of interviews, they recounted a number of remarkable stories of inspiring deaths that followed stopping dialysis. Those were not surprising. What was surprising was this particular case, which had resulted in criminal accusations. To put it mildly, I was shocked and horrified. I became determined to understand what had happened, and in the process discovered that there were a number of similar—and sometimes much more catastrophic—cases around the country where nurses or physicians stopped life-support treatments, provided analgesics to relieve suffering, and then found themselves accused and sometimes even convicted of murder.

Bentancourt v. Trinitas, New Jersey

If you haven't been following the end-of-life rights case in New Jersey, you can catch up on the developments at Thaddeus Pope's Medical Futility Blog. He presented to the court and is posting related materials at his site. From Saturday's post, an online letter from the New Jersey Hospital Association:

A three-judge panel heard arguments this week in Betancourt v. Trinitas Regional Medical Center, which involves important end-of-life issues. In addition to legal counsel for Trinitas, arguments were heard from NJHA, the Catholic Healthcare Partnership of New Jersey and the Medical Society of New Jersey, which together submitted a friend-of-the court brief on behalf of Trinitas.

The case involves an appeal by Trinitas from a lower court order which effectively compelled healthcare professionals to provide life-sustaining medical treatment (in this instance, kidney dialysis) indefinitely to a dying patient in a permanent vegetative state, despite medical professionals having determined that the treatment was not medically justified and was against the standard of care.

The appellate court heard oral argument for approximately 90 minutes. John Zen Jackson, from the law firm of Kalison, McBride, Jackson and Robertson, presented the case for NJHA, CHPNJ and MSNJ. Questions from the judges reflected a disparity of views. The principle of patient self-determination and autonomy was emphasized by one, while another appeared to question whether that principle alone was sufficient to compel the hospital and its physicians to continue providing care beyond a point that they believed was appropriate. The court also asked questions about the process for making decisions regarding end-of-life treatment and the role of the family and non-medical persons. NJHA’s joint brief suggested a process for resolution of such disputes, including internal hospital reviews and a procedure for transfers to a different healthcare facility.

Another aspect of the case is whether it should be considered at all by the court in light of the death of the patient as the appeal was being filed, and the lack of interest on the part of his family in continuing to litigate the matter. Jackson, among others, noted that the issue could recur and needed to be addressed now, rather than at a later time.