Hospice Palliative Care Stories

It has been one year since my mother passed away, and only now do I feel emotionally able to share the devastating experience of her final days. My family and I were unprepared for the lack of coordination, communication, and adequate support from the palliative care system, which left us traumatized during an already unbearable time. While we are deeply grateful for the compassion shown by some individuals, the systemic gaps we encountered must be addressed to prevent others from enduring similar anguish.

One of the most distressing aspects of my mother’s cancer journey was the failure to recognize her rapid decline. Despite being told that hospice care would be appropriate only when she had three months left, her condition worsened dramatically in just days. It was only after calling the Niagara Palliative EMS team—who were among the few to offer meaningful assistance—that we learned she likely had mere days remaining. This revelation came without preparation or support and no hospice beds available, leaving us to face the most challenging moments of her life and ours with little guidance.

Managing her pain and symptoms became an agonizing trial. While she was prescribed medications, we were left to administer them ourselves with minimal instructions. When it became clear the doses were insufficient, we were told no doctor was available over the weekend to make adjustments. We rationed medication while watching her writhe in pain, unable to provide the relief she so desperately needed.

The lack of guidance for family caregivers compounded our distress. We were not taught basic care practices, such as moving her to prevent bedsores or hydrating her lips to avoid painful cracking. These oversights led to preventable suffering—both hers and ours. Additionally, the absence of overnight nursing support forced us into sleepless, emotionally draining shifts to manage her care.

Multiple nurses and personal support workers visited during her final days, but they often lacked a clear understanding of her condition. At times, they asked us what to do, leaving us floundering in moments when we most needed expertise. The Niagara Palliative EMS team became our lifeline, stepping in repeatedly to fill gaps that should never have existed.

My mother’s passing was neither peaceful nor dignified. It was marked by pain, confusion, and helplessness—an outcome she feared and we could not prevent. Her death has left us not only grieving but questioning: Why was her decline not identified sooner? Why was there no on-call doctor for urgent medication adjustments? Why weren’t we provided with basic caregiving instructions to avoid preventable pain?
I share this experience to call for accountability and systemic change. Families should not have to navigate end-of-life care with so little support. Clearer communication, consistent access to medical professionals, and proactive education for caregivers are crucial. My hope is that sharing my story will lead to improvements so that no other family must endure what we did. For my mother’s memory, and for the dignity every person deserves in their final days, this must change.

Laura E, Ontario

Help us show policy-makers and health care leaders the impact of quality hospice palliative care, or lack thereof, on families in Canada through your lived experiences.