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10/09/2024 | Faculty of Health, Policy

Research can be a powerful tool for social change. Researchers’ work can often reflect their deep commitment to making a difference in the world, as was the case in shaping policy discussions and raising awareness for organ donor listing on death certificates. The advocacy of a UC researcher ultimately led to legislative change in the ACT, leaving a lasting legacy and ensuring grieving families are supported by a compassionate and informed approach. Learn about Dr Holly Northam’s work.

Advocacy and awareness

Holly Northam is an Associate Professor in Nursing at the University of Canberra and has over 30 years of clinical experience as a nurse and midwife which underpins her strong social justice focus. Her PhD study, ’Hope for a peaceful death and organ donation’ identified that more must be done to alleviate suffering caused by communication failures in healthcare. Holly played an instrumental role in setting up and running the ACT Organ and Tissue Donation Service and has been recognised with an Order of Australia medal for her for service to medicine and her expertise in this specialisation.

Before the legislative change in the Australian Capital Territory mandating the inclusion of organ donor status on death certificates, families grappling with the decision to donate faced a landscape fraught with uncertainty and emotional turmoil. Amid grief and loss, their loved ones' altruistic wishes often remained undocumented and unrecognised in the official records. The absence of formal acknowledgment on death certificates meant navigating a labyrinth of administrative hurdles and communication gaps with healthcare providers, adding layers of stress to an already heartbreaking situation. Families yearned for reassurance that their decisions aligned with their loved ones' wishes, yet clarity and validation were elusive in the absence of structured legislative support.

The legislative change regarding organ donor listing on death certificates in the ACT involved the introduction of a specific provision to acknowledge organ donation status on death certificates. This change aimed to improve transparency and recognition of individuals who chose to donate their organs after death.

Previously, organ donation status was not routinely recorded on death certificates in the ACT. The legislative amendment mandated the inclusion of a notation indicating whether the deceased individual was a registered organ donor. This notation serves multiple purposes:

Recognition and Honor: It acknowledges and honors the decision of individuals who have registered as organ donors, ensuring their wishes are formally recognized at the time of death.
Facilitation of Organ Donation: The notation facilitates smoother processes for organ donation by providing immediate verification of the deceased's registered status to healthcare providers and organ procurement teams.
Awareness and Education: By visibly documenting organ donation status on death certificates, the legislative change aims to raise awareness about the importance of organ donation and encourage more individuals to register as donors.

This legislative amendment reflects a proactive approach by the ACT Government to support and enhance organ donation practices, promoting a supportive environment for both donors and their families. Healthcare providers and organ procurement teams can now readily identify and respect the decisions of registered donors, facilitating smoother transitions and timely interventions crucial for successful organ transplantation. It aligns with broader efforts across Australia to improve organ donation rates and ensure respectful handling of donors' end-of-life wishes.

Northam's impact on the legislation changes regarding organ donor listing on death certificates in the ACT was instrumental. Through her research, advocacy, and engagement with stakeholders, she helped to shape policy discussions, raise awareness, and ultimately contribute to legislative reforms that support more transparent and supportive organ donation practices in Canberra. Her efforts have left a lasting legacy in promoting a compassionate and informed approach to organ donation legislation and has had a profound impact on organ donation practices and the recognition of donor decisions.

Other social justice work

Northam teaches other units at UC, one of which is ‘Indigenous Health: Contemporary Issues’, a large cross faculty & institution unit which has provided Holly opportunities to ‘nudge’ and help reframe the social justice responsibility held by academics in academic-student relationships – especially for Indigenous students.