Death is an uncomfortable subject. Many of us shy away from talking about it. Not Ryan Alexander, though: as Manager of Hospice Services he’s given the end-stages of life lots of thought.
Six years ago I interviewed Ryan for a column. He was 24-years-old, a newly-minted M.Sc. in Community Health who’d returned to our area just a few months earlier to assume a position as health promotion coordinator for Community Care. He was unmarried and as you might expect had an active lifestyle (workouts four times a week at the rec centre, for example.)
At 30 he’s still in the young adult demographic, but there have been big changes. Five years ago he married his longtime girlfriend, and he and Julia have two boys, almost-three-year-old Finley and Lincoln, who’s just under a year. Two years ago he made the decision to fill in as hospice manager for a staff member on an education leave; eight months ago he made the decision to continue on in that position.
Ryan is now in a very unusual position: every day he’s intimately connected to all life’s stages and key events — marriage, births, death.
When we meet in the hospice offices on the corner of Kent and Lindsay Streets, I’m curious to know more about what his work entails, what he’s learned from his experiences, and how his perspectives have shifted. I’d like to learn more about hospice and hospice services, too, and clear up some ideas — misconceptions as it turns out — that I have, and that you may have as well.
Which is maybe a good place to start. My first misconception is fundamental. I hadn’t realized there are two kinds of hospice, residential and visiting. Ours is a “visiting” hospice. There is no physical structure with beds for those approaching death; instead there is a team composed of nine professionals and approximately 80 carefully-trained volunteers who go out to homes, care facilities or the hospital palliative care unit to provide support and ensure best possible quality of life for individuals facing life-limiting illness.
My second misconception has to do with the services, which extend far beyond what some of us may think. Supports are not just for final days — in fact are better when in place as early as a diagnosis. And they’re very much for the families too, during the illness and after the death.
A significant number of programs focus on support for grieving. Titles suggest the range: Kids Grieve Too & Teen Support, Grief in the Workplace, Healing after Suicide Loss, Moving Through Grief. A Pregnancy and Infancy Loss program initiated by Sunnybrook is soon to be added.
Ryan’s role is to support and work with his team of staff and volunteers, to put structures, resources and programs in place so these frontline staff can focus on the clients. (To learn more about those staff and volunteers, you can watch this locally-produced video Community Care Hospice Services Palliative Care Community Team).
Ryan works to align his team’s efforts to the common goal of helping to ease the journey through critical illness and grief. To provide physical, emotional, social and spiritual support requires a number of different staff and volunteers, meaning a client could potentially have several “touch points” with hospice services.
Why did he choose the position? Professional advancement is one reason, but there are others, and they better explain his reason for staying on after the first year. Unexpectedly perhaps, one he tells me was becoming a parent. “It pushes you to consider people beyond yourself, in a way you’re not forced to when not a parent.”
It’s also for him, simply an extension of what he was doing as a health promoter. “Every position that I have had in my career has had a focus on improving quality of life. It’s no different here at hospice.”
There’s lots he values about the work. The mandate is meaningful and he knows the impact on individuals and families dealing with a process that can be terrifying and isolating. He enjoys the team and working with selfless volunteers, who are all models for compassionate regard.
One of the organization’s achievements during his time at Hospice has been working with the Community Care Foundation to rally the community support that brought in $87,000 for Grief Support programs from an AVIVA grant. Additional resources are gratifying, of course, but he’s just as happy about the way the campaign got the word out about Hospice and its services and evidence that the work is valued. The grant depended on votes. As Ryan points out “the 26,000 plus votes means our story was heard and our contribution to the community and understood.”
We come to the question of what he’s learned and how his perceptions have shifted. “One of the greatest lessons I’ve learned,” Ryan tells me, is that if you have a terminal illness (i.e. cancer, kidney disease or ALS) the sooner you get connected with community-based services like hospice, the sooner you surround yourself with experts in the area and support for a journey that often has lots of twists and turns.”
Another lesson learned is that there are no guarantees in life — that those illnesses that are terminal can happen at any age. For this reason it’s important to have end-of-life discussions with family now and make some preparations. It’s a revealing fact that over half of Canadian adults have not drawn up a will, and that over 70 per cent are without signed powers of attorney. Ryan and Julia have both.
They’ve also had conversations about end-of-life decisions and what they want to happen in the event that they cannot speak for themselves, using a valuable web resource called Speak Up to structure those conversations. Big questions: What makes my life meaningful? What would make prolonging my life unacceptable to me? When I think about dying, I worry about certain things happening. Who can I talk to about these worries?
Difficult conversations, but of enormous value when faced with difficult circumstances, and the website walks you through the process.
The last lesson — and like the others, this should inform all our lives — is the importance of focusing on what really matters, living our lives fully, and taking pleasure in all that life has to offer. “For me,” Ryan tells me, “family tops that list.” For that reason — a small detail, but one that sticks with me — Ryan made time to do six separate Easter Egg hunts with his kids in less than a week, simply because he is fortunate enough to have that opportunity and time with his family.
A Final Note: Another misconception about hospice is that there are fees attached to the services. Ryan explains: “Hospice services are offered at no cost to the client. We receive some funding from the Ministry of Health through the Central East Local Health Integration Network (LHIN) but it is not enough for our full complement of services. For the unfunded pieces of Hospice Services we fundraise, thanks to the Community Care Foundation. We are extremely fortunate to have the support of individual members of our community, local businesses, various foundations and granting agencies. This support allows us to sustain and enhance our programs moving forward.”
If you’d like to support their work, consider participating in the upcoming May 6 Hike for Hospice.