DO WE KNOW ENOUGH ABOUT INFORMED CONSENT? THE RESULTS SAY NO

J. Warren¹, B. Neilson¹, C. Ivey²

¹Office of the Health and Disability Commissioner, Wellington, New Zealand, ²University of St Augustine for Health Sciences, San Deigo, United States

Background: In New Zealand, the Health and Disability Commissioner (HDC) promotes and protects people's rights as set out in the Code of Health and Disability Services Consumers' Rights (the Code). In 1994, legislation enacted the establishment of HDC following the 1988 Cervical Cancer Inquiry Report, in which major failings were identified regarding patient information and consent.
HDC is an independent watchdog, providing people using health and disability services with a voice, resolving complaints, and holding providers to account for improving their practices at an individual and system-wide level.
The Code sets ten rights for people using health and disability services and the obligations for their providers. Valid informed consent for health professionals means allowing someone to do something that would otherwise be impermissible. Informed consent is one of the central rights of the Code to empower and protect these individuals or patients.
It has been almost 30 years since the establishment of the Code. Is informed consent still an issue in New Zealand health and disability care?

Purpose: This study aimed to identify if informed consent was a significant issue for complainants to HDC, to identify any issues of primary concern, and highlight ways to remediate these issues.

Methods: HDC complaints data from 2018-2022 containing informed consent issues as the ‘primary issue’ was isolated. Complaints were then analysed in terms of a secondary explanatory issue, i.e. information, capacity, and coercion.

Results: Between 2018 and 2022, an average of 15.75 per cent of complaints contained issues of informed consent. The most commonly complained about issues were ‘consent not obtained/adequate’ (27.5%); ‘issues with involuntary admission/treatment’ (19.1%); ‘incorrect/misleading information provided’ (15.6%); ‘inadequate treatment information provided' (14%). Of all complaints within the study period where informed consent was identified as a primary complaint issue, 6.3% were formally investigated following preliminary assessment, and 28.3% of those formally investigated were found to be in breach of the Code.
The most commonly complained about issues where a breach was found were ‘consent not obtained/adequate’ (45.5%); and ‘inadequate treatment information’ (18.2%).
HDC’s systemic analysis of formal investigations over many years provides insight into the core informed consent issues. It has identifiedcomplacency, consistency, andeducationas central issues of informed consent in health service provision.

Conclusions: Informed consent, including all its main components, is still a significant contributor to complaints to HDC. This demonstrates the importance of education to reinforce the fundamentals of this crucial part of healthcare to ensure patients are empowered and informed, and their preferences are valued and respected. HDC has many educational resources to promote the Code and has developed e-learning modules for providers to improve education in this area.
Finally, the importance of documentation must be stated to avoid the question - if it is not notated, did it happen?

Implications: Informed consent is fundamental to quality care for patients worldwide. Only through appropriate education and improving providers' understanding can patients feel empowered and comfortable with their care.

Funding acknowledgements: Nil

Keywords:
Informed consent
patient rights
professional responsibilities

Topics:
Professionalism & ethics
Education
Education: clinical

Did this work require ethics approval? No

Reason: Ethics approval was not necessary as no identifiable patient information was accessible during the data collection.