“I can’t remember [staff] ever suggesting or saying that there is a third option – of not having dialysis.” (Man on dialysis, aged 82 years)
This quotation is from a recent article published in AJKD by Tonkin-Crine et al, who conducted semi-structured interviews with patients over 75 years old to explore their perspectives on choosing between dialysis and conservative (non-dialytic) management. The patients included those on dialysis, those preparing for dialysis, and those who had opted for conservative management; and were recruited across the United Kingdom from nine different units with different conservative management policies and practices.
The study is timely and relevant as there has been an increasing focus on conservative care as a valid treatment option, particularly for older patients for whom the burden of dialysis might outweigh the medical and psychosocial benefits. As most would be aware, the American Society of Nephrology (ASN) Choosing Wisely Campaign recommends that long-term dialysis should not be initiated without ensuring a shared decision-making process between patients, their families, and their physicians.
However, the discussion around conservative management is clinically, emotionally, and ethically challenging for a number of reasons. The evidence about conservative management is lacking, and difficult choices or trade-offs must be made between survival and quality of life. There is a need to respect the values and preferences of the patient as well as their family members, who may express conflicting views.
In this AJKD study, patients in units with an established conservative management pathway believed that “dialysis did not guarantee longer life,” and regarded conservative management as a “real alternative” to dialysis. In contrast, patients from units with a less established conservative management pathway expected that dialysis would significantly extend their life. Some patients conceptualized conservative management as temporary and symptom-dependent, opting for dialysis when they felt unwell. Overall, patients were influenced by how the options were communicated and framed by clinicians.
The findings support structured discussions about conservative management with suitable patients to promote informed and shared decision-making. Dialysis should not be presented as a necessity, but a treatment choice. The authors suggest the use of decision aids, and provide reference to an example available at www.yodda.leeds.ac.uk. In July 2014, Kidney Health Australia released a digital decision aid, which provides patients with a detailed explanation about conservative care as a treatment option. As concluded in the study, clinicians must have detailed conversations with patients about their “likely trajectory of illness, including death, dying, and advance care planning.”
Mastering the art of such a conversation is not straightforward. It is one that requires careful framing to ensure that patients are empowered to discuss their preferences and goals, and to make informed decisions about their treatment.
Dr. Allison Tong
AJKD Blog Contributor
How do you start the conversation about conservative management with patients and their families?
What do you find challenging about discussing conservative management or advance care planning with patients, and why?