What It Means to Be There: Rethinking End-of-Life Care Through Presence and Respite
Healthcare systems are designed to solve problems. They diagnose, treat, stabilize, and discharge. But not every stage of care is about fixing something. At the end of life, the focus shifts to supporting clients and their families, and shaping how that time is experienced.
During Hospice & Palliative Care Week, this year’s theme—Palliative Care Everywhere—pushes the conversation beyond access and into experience: What does good care actually look like when someone is living with a life-limiting illness? And who is responsible for delivering it?
In practice, much of that responsibility falls to families.
More people are spending their final months at home or moving between home and hospital. While being at home at this stage can improve quality of life, it also shifts responsibility onto spouses, children, and loved ones, many of whom are not formally trained, yet are expected to coordinate care, provide emotional support, and remain constantly present. The result is predictable: caregiver burnout is not the exception but usually the baseline.
This is where structured supports—particularly hospice volunteers—play an essential role.
Circle of Care’s visiting hospice and palliative care program supports individuals living with a life-limiting illness, along with the families who are caring for them, by responding to the full range of needs that emerge over time wherever clients are living, including in private homes and residential settings.
Our hospice volunteers, all of whom complete the provincial 30-hour Hospice Care Core Volunteer Training, provide companionship and informal support over time. This includes sitting with clients during periods of rest or decline, providing consistent social interaction through calls or visits, and offering families short but meaningful periods of respite.
Recently, we accepted a referral for a client whose family asked if someone could be with him on Saturday and Sunday evenings so they could step away briefly to rest.
On Saturday evening, Circle of Care hospice volunteer Sharone took the shift. It happened to be her anniversary that day, and she had plans to celebrate. But when she saw the request for a volunteer, she cancelled her plans.
“It was my privilege to spend time with him,” she shared. “I sat there in the quiet room and followed his breath as I read my book.”
In a healthcare system focused on outcomes and efficiency, volunteers serve a different purpose. They are not there to administer medication or monitor vitals; they ensure a continuity of human presence. That presence is not passive but form of support with real impact. Sitting quietly, noticing small changes, maintaining a steady environment—these are deliberate contributions that support dignity and connection.
Their presence is part of an ongoing rhythm of care, one that shifts from the family to the hospice volunteer, and back again, as needs change.
On Sunday evening, another Circle of Care volunteer, Bianca, came to stay with the client while his wife and daughter left to eat dinner. It was during that time that he died peacefully, with Bianca by his side.
Afterward, his wife shared: “I can’t thank you enough for all you’ve done. My biggest worry was that he was going to die alone. You helped make sure that didn’t happen.”
It’s a concern many families share. There is often a quiet fear that, despite everything they are doing, the final moments might come without someone there. It’s not just about being in the room—it’s about having someone present to witness the end of a life, to hold that moment, and to ensure it is met with care and recognition.
Respite is often framed as a support for caregivers—and it is. But it also has a secondary effect: it stabilizes the care environment around the client. When caregivers are able to step away, even briefly, they are more likely to sustain their role over time. This ultimately helps ensure that day-to-day decisions continue to reflect what the client has expressed they want, even as their needs change over time.
Comprehensive end-of-life care means recognizing human limitations on time, energy, and emotional capacity, and respond with supports that are flexible and grounded in real-life needs.
Sometimes, that support looks like coordination or counselling. Sometimes, it looks like making sure there is food in the house. And sometimes, it looks like someone sitting in a quiet room, ensuring that a person is not alone in their final moments.
