Kate Reed, a devoted palliative care nurse practitioner, has devoted her life to helping people die well. Now, she finds herself at a bittersweet turning point as she engages in her own fight against Parkinson’s disease. Reed’s journey started when the first symptom of her disease appeared in her deteriorating handwriting. Today, she champions dignity, choice, and having open conversations about the realities of end-of-life care.
The Australian Capital Territory (ACT) voluntary assisted dying scheme opened on November 3. It has ignited a large positive movement for discussions surrounding death with dignity. Reed thinks this new effort is critical to help people with terminal diagnoses have a better quality of life. Meanwhile, Gail Ford, a resident of the ACT, plans to utilize this scheme when her quality of life declines beyond recovery following serious injuries from falls.
The Impact of Parkinson’s Disease
Reed’s experience with Parkinson’s started with insidious symptoms, including a noticeable drop in her handwriting. Her condition has tested her resolve through the years. She has approached it as a challenge to be overcome, including through several years of direct brain stimulation therapy. Her personal experiences deepen her professional understanding of what it means to have end-of-life options.
“If you get to the stage, for example, where you’ve got nothing that you’re looking forward to, where you can’t eat normally, you’re just eating slush, what’s life like?” – Kate Reed
Reed points out that situations like these can drive people to make decisions about their end-of-life care. As someone who has witnessed countless patients navigate their final days, she recognizes the need for options that respect individual dignity.
“Everyone should have that ability because death for many people is not dignified and it’s not pleasant.” – Kate Reed
The voluntary assisted dying scheme provides another option—a much clearer, compassionate antidote to suffering. It honors the dignity of each human being by treating people like full, complex, living individuals and removing a judgmental lens.
Understanding the Voluntary Assisted Dying Process
To be accepted into the ACT’s voluntary assisted dying scheme, a person needs to: Be aged 18 years or older. They must have resided in the territory for at least 12 months, unless they are granted a residency exemption. The process consists of ten steps designed to ensure thorough assessments and safeguards:
- First request
- First assessment
- Consulting assessment
- Second request
- Final request
- Final assessment
- Administration decision
- Prescription and supply
- Administering the substance
- After death
Reed points out that applicants can begin the application process and choose to stop and/or withdraw at any stage. They aren’t required to stick around if they don’t want to.
“Once you’re in it, you’re not committed to it — you can stop, but you can also pause,” – Kate Reed
This added flexibility allows people to take charge of their end-of-life care decisions. More importantly, it provides them with the time and space to consciously consider their alternatives.
Voices for Change
Gail Ford wishes to be able to access voluntary assisted dying when she can no longer regain a quality of life. She is up against a growing number of complex, fall-related, high-cost injuries. She argues for having a range of choices at your disposal when times get tough, and the pain is too much.
“I think it’s important to have a choice and to die with dignity,” – Gail Ford
Darlene Cox was appointed the first chair of the new scheme’s oversight board. She highlights the importance of ongoing oversight and vigilance in the voluntary assisted dying process. She promises that enough protections have been installed to guard against coercion and to ensure that anyone who chooses this route does so freely.
“We’re monitoring it to look for opportunities to improve the service, to make sure that there are sufficient safeguards in place, that people really are entering into this voluntarily, that there is no coercion,” – Darlene Cox
Currently, there are twenty-nine engaged authorized practitioners continually rocking the scheme. United, stakeholders from every angle are committed to bring a compassionate and dignified alternative to those who need it most.
A Shift in Conversation
Reed is optimistic that recent changes around voluntary assisted dying have created conditions for greater discussion about death and dying to take place. She asserts that society is beginning to embrace these conversations, acknowledging that everyone will face death eventually.
“We are really being much more open in these conversations and the reality that we’re all going to die someday, and let’s do everything we possibly can to improve our quality of lives every day up until that time,” – Kate Reed
The growing interest in voluntary assisted dying reflects a thirst for knowledge around end-of-life options as part of comprehensive palliative care rather than an alternative. Reed believes that enabling people to enjoy their last years of life in comfort and dignity should be a top priority.
“There’s a lot of thirst for knowledge, not just around voluntary assisted dying, but more as it is as an end-of-life option — not an alternative — to palliative care,” – Kate Reed
