Home Hospice Association (HHA) was founded in 2014 by Tracy Robertson, Jeanne O’Kell, and Glen Burkholder when - having all worked for several years in the areas of death advocacy, end-of-life care, and funeral provision, respectively - they realized that people facing death lacked the resources needed to die on their own terms. In fact, 84% of people in Canada don't have access to palliative care. A big reason for this is because, too often, the medicalization of dying in Western cultures leads to the overwhelming need for infrastructure in which people can die - such as hospitals and residential hospices - instead of people dying at home like most would actually prefer. And even if an individual is provided palliative care, it usually isn’t sensitive to cultural, spiritual, or financial needs, and that care doesn’t serve the dying and their family through every stage of the end-of-life journey.
And so Tracey, Jeanne and Glen set out to fill this gap in care with HHA’s unique approach to quality and comprehensive end-of-life care for all - offering services, support, and compassion to anyone, at any time, of any age, and under any roof. Gathered at a cabin outside Ottawa in the fall of 2014, together they excitedly imagined the incredible impact that such an organization could have, and even drafted what would become the HHA logo on a nearby pizza box (original images pictured above!). Since gaining charitable status in 2016, HHA has partnered with numerous agencies and communities across Canada and has served thousands of clients throughout Ontario.
From the very beginning, HHA put into place grief programs aimed at normalizing death for children, teens, and adults. We also became national leaders in the facilitation of Death Cafés, and our Death Education training programs, such as our Death Doula Certificate Program, quickly became a mainstay of HHA’s offerings due to the overwhelming demand. As we look to the future, we will continue to grow the Death Education movement, making free and accessible Death Doula support an integral part of the end-of-life journey in Canada.
A message from HHA’s CEO Tracey, in memory of her grandfather Jim Huller
I remember hearing the song “You Were Loved” by Wynona Judd for the first time when my grandfather was in the hospital suffering from congestive heart failure. To this day, I can still hear the chorus: “When you were touched by someone, held by someone, meant something to someone you know you were loved.”
We didn’t know then that my grandfather’s condition was “fatal”. While his heart had always been physically weak, he was such a strong man. And the spirit of his heart was so powerful that we just assumed he would be with us for a very long time.
When he became too weak to stay at home, our family didn’t have any choice but to move him to a nursing home. At that time, hospice either didn’t exist as a real option for us, or - if it did - no one within the medical community told us so. While we tried hard to make him comfortable and he himself kept his spirits up as best he could, we were all deeply aware that this wasn’t the place where this man that we loved so very much and who lived with such dignity should have spent his last 6 weeks of life. But for lack of a choice in the matter, that’s what happened.
It feels like yesterday that I laid my head beside his in the nursing home and shared our last conversation. My grandfather was a man of few words, which made our last hours together even more significant. I always knew how much he loved me, but being able to hear the words and share my own feelings gave me a great deal of peace. Because I was with my grandfather when he died, it was me who had to tell my father and grandmother (his son and wife) that he was gone. My final moments with him also gave me the strength to help my family deal with their loss.
In my work at Home Hospice Association, I draw strength from my grandfather every day and feel constantly inspired by his generous and welcoming nature, and the way he appreciated people for who they were. One of my family’s favourite memories is of him greeting the garbage collectors one summer day, offering each of them a cold beer and saying: “Honey, anyone who works that hard deserves a cold beer on a hot day”.
If my grandfather could have painted a picture of my life’s work, I like to imagine that he would have painted the picture of hospice and not in the shape of a building but that of a loving heart.
Tracey Robertson - Home Hospice Association CEO