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Informed consent preceding a medical procedure is an ethical and legal requirement that necessitates elements including decision making capacity, voluntariness, understanding of information, and authorisation. Chronic dialysis is an invasive treatment with far-reaching implications on an individual’s longevity and quality of life. Despite this, consent is often assumed when patients attend dialysis; it does not reflect the complexity of shared decision making, may not include adequate prognostic information, and may fall short of ethical standards. Patients therefore undergo a procedure without making an informed choice and suffer the burdens of treatment, with many regretting being on dialysis.
A quality improvement project was therefore proposed to implement written informed consent for all chronic dialysis patients, where no formal process previously existed. The aim was to explore feasibility and identify strategies and barriers to implementation.
Written consent, following proper information and assessment of capacity and voluntariness, was conducted at a single Australian nephrology unit comprising of two tertiary hospitals, three haemodialysis units, and home haemodialysis and peritoneal dialysis training and support services. The unit services around 250 prevalent dialysis patients at any one time and up to 60 new chronic dialysis patients per year.
Outcome was measured as the number of patients with completed consents and as a percentage of total prevalent dialysis patients. Specific strategies and barriers to the uptake of dialysis consent were documented during the project.
No dialysis patient had consent when the project began, and 100% of patients were consented after 4 years. A dialysis specific consent form and associated information was designed and endorsed by nephrologists and hospital governance. Written and verbal information was provided from multiple sources: senior nurses, dietician and social worker in a pre-dialysis education clinic; and nephrologists in inpatient and outpatient settings. The consent form necessitated the nephrologist to verify legal elements of consent, including capacity, voluntariness, and provision and understanding of relevant information. Patients must verify that information included not only logistics of dialysis, but also prognosis, disease trajectory, and the alternative of conservative kidney management.
Consenting began with incident dialysis patients, and subsequently extended to all prevalent dialysis patients. Strategies that improved uptake included education and endorsement by nephrologists and enlisting the assistance of administrative staff and senior nurses to oversee the process. Barriers included time limitations and workload in clinics, particularly for patients requiring additional support such as an interpreter or enduring guardian, and the lack of face-to-face contact during COVD-19 restrictions. (Figure 1)
Despite dialysis consent not being a routine practice within nephrology, successful implementation is possible to fulfil ethical and legal obligations and improve shared decision making. We found the process acceptable to nephrologists, nurses, and patients. Its 100% uptake confirms its feasibility, appropriateness, and sustainability as a practice change.