Associate Professor Peter Mount is a nephrologist at Austin Health, and the Renal Clinical Lead at SCV in the Chronic Prevention and Mental Health Centre of Clinical Excellence.
People with permanent kidney failure face complex and unavoidable decisions about their health. The range of treatment possibilities includes conservative care without dialysis, long-term dialysis, or kidney transplantation. The implications for these choices are substantial.
A shared decision-making approach between patient and clinician is widely advocated, but how to best implement this is challenging. And even more challenging, it seems, for renal patients; Victorian Healthcare Experience Survey data shows renal patients generally feel less involved in decisions about their care.
Effective shared decision-making requires a patient to have enough information about their health condition and its treatment options, and to be sufficiently involved, as much as wanted, in decision-making.
In the right setting, long-term (chronic maintenance) dialysis can prolong life, improve symptoms, and may bridge to a future kidney transplant. These considerations, however, need to be balanced against limitations of dialysis, including complications of treatment, and substantial impacts on day-to-day life.
Recognising that the information patients receive when deciding on treatment varies between providers and services, written informed consent at the time of initiating long-term dialysis has been identified as an opportunity to facilitate shared decision-making, enhance patient autonomy, and encourage patient centered care.
To address this challenge, the Safer Care Victoria Renal Clinical Network established the Improving Patient-Provider Communication working group, including consumers and clinicians from multiple Victorian renal services.
This group has completed a project to standardise informed consent for maintenance dialysis, identifying 15 minimum recommended standards for inclusion in informed consent forms. Template consent forms, for both facility and home-based treatments, were developed, including interactive elements, designed to encourage consumer involvement in the process.
A patient-reported experience measure was developed, finding high levels of patient satisfaction with this process, in terms of receiving the right amount of information, as well as being involved in decision-making. This project supports the over-arching aim, that no patient with permanent kidney failure is left behind, in terms of getting the right amount of information, and to be involved in decisions about their care.
Results from our pilot found
- 86% of surveyed patients reported feeling involved in decisions about their care as much as they wanted to be
- 90% of surveyed patients reported receiving the right amount of information about their care and treatment.
For help in adapting these for your use, contact Renal.Clinicalnetwork@safercare.vic.gov.au