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.

Palliative Care Best Practices Study.

7thSpace posts a study that looks at the universality of best care practices among palliative care givers and finds there is no there there.

Methods: The official documents by the most representative health organisations committed to the definition of policies and guidelines for palliative and end-of-life care had been considered. The documents were analysed through a framework of the components of end-of-life care derived from literature, which was composed of 4 main "areas"and of 12 "sub-areas".

Results: Overall, 34 organizations were identified, 7 international organisations, and 27 organisations operating on the national level in four different countries (Australia, Canada, UK and United States).

Up to 56 documents were selected and analysed. Most of them (38) are position statements.

Relevant quotations from the documents were presented by "areas"and "sub-areas". In general, the "sub-areas"of symptoms control as well as those referring to relational and social issues are more widely covered by the documents than the "sub-areas"related to "preparation"and to "existential condition".

Indeed, the consistency of end-of-life choices with the patient's wishes, as well as completion and meaningfulness at the end of life is given only a minor relevance.

Conclusions: An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity.

The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model.

Is the need to tailor care to each patient a bad thing or a viable thing? However exhausting and difficult such practice is, is it a result of the nature of the profession or is it an issue of palliative care's burgeoning development? And how is this lack of ethical best practice guidelines like or unlike the care guidelines other medical doctors operate under?

I would love to know what hospice and palliative practitioners have to say!