The definition of advocacy can vary by each individual.
For me, advocacy for end-of-life care and options has been a way to help carry out the legacy of those who have strongly supported end-of-life options. As well, the right-to-die movement of medical aid in dying practiced today.
Working across various sectors in the healthcare world, I’ve also come to find that there are not nearly enough voices advocating for the terminally ill.
More than a few years ago, I came across the news story about Brittany Maynard, the American woman diagnosed with terminal brain cancer who made the decision to move from her home in California to Oregon to access medical aid in dying.
It was also around this time that my mother’s dear friend was found unconscious by her college-aged son after suffering a severe stroke and terrible fall. He’d just gotten home after a day of classes from university only to find his mother laying upstairs on her bedroom floor unconscious and bleeding from her head after the serious fall. Shortly after, she suffered through another stroke while at the hospital.
Her condition worsened and she went into a coma for several months. The family received opinions from various doctors regarding her condition. She also received the best care between two well-known hospitals where she was being treated.
Unfortunately, within these months after being moved to hospice care, she never woke from her coma. Her physician said there would be a nominal chance that she’d recover.
After much thought, her family agreed upon the decision to remove her from life support.
While in palliative care, the physician gave her morphine in her final state and her organs began failing. She then took one last breath into final sedation and gave out a sigh before gently passing in front of her loved ones.
I couldn’t help but remember this time in my life. So many questions went through my mind. You see, it was just the day prior that my family had seen her, and she was perfectly fine.
It made me really question the end of life journey.
Perhaps it was a reminder that we are all getting older and that we all will die.
Such reflections on the end of life made me slow down and appreciate my life even more than I had been. As I further researched and read, I learned that today there is so much more to end-of-life options such as decisions, spirituality, autonomy, ethics, mental health, physical health, legal documents, planning, and more.
Questioning both care and choice at the end of life should be addressed by all of us at some point in our lives. The best time to explore your advance directives would be now.
As an advocate with Compassion and Choices, the nation’s oldest and largest nonprofit organization working to improve patient rights and individual choice at the end of life, including access to medical aid in dying, there’s never been a better time than now to exert patient autonomy with end-of-life care.
There is a special commitment found here at C&C to empower people to get the care they want during a serious illness or at the end of life which is so highly impactful.
One of these ways is by advocacy through education and awareness of helping people plan well and become advocates for both themselves and for their loved ones.
“I do not want to die. But I am dying. And I want to die on my own terms,” said Brittany Maynard who fought for expanding death-with-dignity laws and inspired the so-called “Brittany Bills” across the nation. Maynard’s voice at Compassion and Choices as a spokesperson for the right-to-die movement made historic success on October 6, 2014, as her story went global. The power of her voice supercharged the movement to expand and improve end-of-life choice ever since.
“I’m not killing myself. Cancer is killing me. I am choosing to go in a way that is less suffering and less painful,” Maynard told NBC News during an interview on October 9. “Not everybody has to agree that it’s the right thing because they don’t have to do it.”
More than 12 million people have watched the People.com video describing why Brittany Maynard and her family had to move to Oregon so she could utilize its Death with Dignity Act. This was because California did not have a medical aid-in-dying law at that time.
“We are doing the best we can to follow what Brittany asked us to do, to speak up for people that can’t speak up for themselves,” Deborah Ziegler, mother of Brittany Maynard says in her book, Wild and Precious Life. She let everyone know, “I never lose sight of the fact that Death with Dignity is a human right and that people are beginning to create a grassroots movement around it.”
Brittany Maynard also released a new video just before her 30th birthday. The video highlights her advocacy, urging Americans to join the nationwide campaign to pass death-with-dignity laws across the United States.
“I hope for the sake of other American citizens, all these people I’m speaking to that I’ve never met, that I’ll never meet, that this choice be extended to you… That we mobilize. That we vocalize. That we start to talk about it,” Maynard says. Maynard ended her suffering under Oregon’s Death with Dignity Act on November 1, 2014.
The medical aid in dying law in Hawaii, I finally passed after 20 years of trying, with Compassion and Choices leading the grassroots campaign. And we aim to have more than half of the nation to have access to medical aid in dying in the next 10 years. There have been legislative advancements in more than 24 states thus far.
My dream is also that of Maynard’s, “That every terminally ill American has access to the choice to die on their own terms with dignity.”
– Jennifer Lynn