The Duty to Care for Those Who Care: Person‑Centred Palliative Support for Young Carers

By Maria Panzera, Hospice and Palliative Care Nurse Educator at Life and Death Matters | RN BScN MN CHPCN (C) CHE 

At the bedside—whether I was sitting on the floor of a child’s bedroom during a home visit or adjusting a pillow in an adult palliative care unit—I am reminded daily that palliative care is, at its heart, person‑centred care. We talk about compassion, dignity, and presence as if they belong only to the patient, but in truth, these principles must extend to the entire constellation of people who make care possible. And among them, young carers are often the most overlooked.

I have met teenagers who manage their mother’s ALS symptoms with a steadiness that would humble any clinician. 

I have watched nine‑year‑olds anticipate their father’s MS‑related pain before adults in the room noticed. 

I have supported siblings navigating the anticipatory grief of a brother or sister who is dying, while still needing help with homework and bedtime routines. 

These young people are not “helping out.” They are providing care—real, essential, emotionally complex care.

The Caring in Canada (2026) report echoes what I witnessed in the journey with so many carers: caregivers are tired, anxious, overwhelmed, and often unsupported. Young carers feel these impacts even more intensely, because they are still developing their sense of self while carrying responsibilities far beyond their years. Person‑centred care requires us to recognize this reality.

In pediatric home care, I saw how young carers become the quiet stabilizers of the household. In adult care, I see how they advocate fiercely for parents, grandparents whose voices are fading. They hold fear and love in the same breath. They deserve to be met with the same compassion and dignity we offer the person who is ill and/or dying.

Person‑centred care means asking, “Who is carrying this?” and then making space for all those individuals. 

It means acknowledging young carers as part of the care team, as  those  who need to be cared for, without placing adult expectations on their shoulders. 

It means holding space for person centered explanations, involving them in ways that honour their capacity, and protecting their right to be involved as equal partners in care as children, adolescents, or young adults.

It also means advocating for systemic supports—financial, emotional, educational—that the report highlights as urgently needed. When young carers are invisible in policy, they become invisible in practice. And invisibility erodes dignity.

As clinicians, we must shift this. We must recognize young carers early. We must help give voice to their experiences of caregiving and illness, with the same attentiveness we bring to symptom assessments. We need to create care plans that honours their role while safeguarding their wellbeing. We have an imperative to model compassion not as sentiment, but as structure—embedded in how we care, we communicate, how we teach, and how we design care pathways.

The young carers I’ve met have taught me what courage looks like in its purest form. Their presence reminds me that palliative care is not solely about easing suffering; it must be about upholding dignity for every person touched by illness.

And dignity, for young carers, begins with being seen, heard, and held within the circle of care.