Laurie James (in wheelchair) spent her last days at Sunnybrook’s Palliative Care Unit, bonding with staff and enjoying long family visits. (Photograph by Kevin Van Paassen)
For Sandra Mitchell, Sunnybrook’s Palliative Care Unit (PCU) became her second home in April of this year. She, her two sisters and a close cousin were taking turns keeping constant vigil at the bedside of their 85-year-old mother, Laurie James, who was in congestive heart failure and the final stages of a cancer that had spread from her kidneys to her pancreas and lungs.
“I would arrive at 8 p.m., spend the night on a cot next to Mom, help her with breakfast and lunch, then leave at 1 p.m. to pick up my granddaughter from school,” says Sandra, recounting her caregiver schedule at Sunnybrook. She would babysit until 6 p.m. and then go home to grab a shower.
Sandra’s family isn’t alone in their dedication. Given there are 56 beds at the PCU – one of the largest palliative care units in the GTA – the presence of devoted family members is a constant. This is why the extensive renovations taking place at the unit are so critical. “We wanted to have as many amenities as possible for the families that stay overnight,” says Sandra De Costa, the unit’s patient care manager. “We want to make it as home-like as we can, not so institutionalized.”
The first phase of the renovations, which began a year ago, are already bringing comfort and convenience to the unit’s families – welcoming open-concept lounges with gas fireplaces, comfy armchairs and flat-screen TVs; a private meeting room overlooking a lovely garden; and two sleek modern kitchens offering patients’ families ample space for storing and preparing food, as well as a place for them to gather at tables over coffee or tea.
“The reaction has been very positive, particularly for the kitchens,” notes De Costa. “Most families socialize and congregate in the kitchen. Comfort and convenience mean a lot during their time here.”
The second phase of renovations will be underway soon. It will see upgrades to the on-site workstations of Sunnybrook’s interprofessional health-care teams. The final phase will enhance and upgrade the patient rooms. The renovation work has been largely funded by McDermott House Canada, which has made a commitment of $3.6-million to the project.
When they were caring for Laurie, who passed away in July, Sandra and her family certainly appreciated the new amenities. “We used the kitchen all the time. We brought in our homemade Caribbean food,” says Sandra. “It’s also great that we were able to do laundry on the unit. And on Mother’s Day, we booked some private time in the Garden Room. We brought food, Mom opened her presents, all her grandchildren and great-grandchildren were around her. It meant a lot.”
Choosing palliative care at Sunnybrook for their mother – a strong, independent woman from Guyana who fought her first bout with kidney cancer five years ago – was “the best decision ever,” according to Sandra. “It maintained her dignity and gave her a greater sense of control.”
At Sunnybrook’s PCU, Laurie also had numerous activities she could participate in – pet therapy, music therapy and various social events, to name just a few – which Sandra also appreciated. “You’re not just lying there on a bed waiting to die,” she says. “You can still enjoy life a little. It’s not that you’re just hooked up to machines fighting for life. It’s more that you’re releasing life on your own terms, letting go gently.”
During her stay, Laurie forged personal bonds with the staff – Ruben Amando a Registered Practical Nurse (RPN), was her favourite. “She used to light up when he’d pass by,” says Sandra, laughing. “He could get her to do anything!”
This is precisely the rapport that the Sunnybrook palliative care team aims to build with all their patients.
From physicians and nurses to art, recreation and music therapists, dietitians, a chaplain, a social worker, pharmacist, physiotherapist, occupational therapist and other support services, the unit’s interprofessional team does everything possible to ease pain and other distressing symptoms while tending to the emotional, psychosocial and spiritual needs of the patients. Every effort is made to respect cultural differences, rituals and beliefs, to find out what is important to their diverse clientele and incorporate this into their care.
“People think the Palliative Care Unit must be a sad place,” says De Costa, herself a registered nurse who worked on the unit for many years before becoming patient care manager. “But our focus is on helping each patient enjoy each day to the fullest. If you were to ask anybody on the team why they do what they do, it’s because it’s such a rewarding job. It’s an honour to help patients at the end of life. You’re really making a difference to them and to their family. We’re here for the patient and we’re here for the family, whomever the patient considers their family to be.”
It is this kind and compassionate approach to palliative care that resonates strongly with the family members left behind, once their loved ones are gone. Some return to the unit to train as hospice volunteers, repaying the kindness they received during their own time of sadness.
“I’m certainly going to go back and volunteer,” declares Sandra. “We are all diverse, but [in the unit], I see only oneness. We’re all there for the same reasons – your loved one is dying and you’re just there. It’s all about love.”
Thoughts from the Dying About Living
It’s not easy to talk about dying. For many, the subject is almost taboo. But at Sunnybrook, patients in the Palliative Care Unit are being given the opportunity to be heard – that is, if they choose to.
Thoughts from the Dying About Living is a project that aims to open the lines of communication on this difficult topic. Patients volunteer to talk about their lives, their thoughts, their philosophies. Some appear on video, others prefer to share their thoughts in print. Edited for length and uploaded to the hospital’s website, these interviews are then made accessible for viewing by their families and the wider community.
The project – unscripted and open-ended – is a way for patients to deal with some of the emotions associated with dying, and to be able to share thoughts and feelings that might be difficult to express in person. Through Thoughts from the Dying About Living, Sunnybrook is helping patients create an emotional legacy for their families, as well as the community at large.
At once poetic and pragmatic, the patients say what’s on their minds, as depicted in these excerpts:
Barbara: Don’t be sad, it’s not worth it. It happens to people and you have to come to terms with it, and I did.
Guy: I’m ready for this. It’s okay. I don’t like it. Who would? Wiebke: You just take it as it comes. I’m at peace with myself.
Christl: I’m satisfied with what I had in life. I had 80 wonderful years.
Helmut: The most important thing is the people around you.
Joyce: Life is an adventure. Don’t sit back and be afraid to do anything. Go for it! Go do it, I tell my family. Come out and visit me and we’ll have this day together.
Judith: When I go out and hear the birds and smell the flowers, that’s good!
Visit Sunnybrook.ca/dying to watch the videos.