Recognizing Change, Supporting the Person: My Journey in Palliative Care and Developmental Services

“Care must be person-centred, and every voice deserves to be heard.” (Canadian Hospice Palliative Care Association, 2013)

My journey into nursing actually began in the 1980s as a volunteer in a group home for children and young adults with intellectual and/or developmental disabilities. At the time, I didn’t realize that those first experiences — helping with meals, listening to stories, and simply being present — would shape my professional path. What I did know was that the people I was privileged to spend time with had rich lives, unique personalities, and a deep need to be understood. Over time, I learned that small changes in behaviour or routine could signal something important. That early lesson has stayed with me.

Building Collaboration for PWIDD

In 2019, four distinct groups of professionals recognized the inequitable access to quality palliative care for People with Intellectual/Developmental Disabilities (PWIDD). They came together to address the gaps and challenges faced by this population and their supports. Out of this concern grew a collaborative network that united Developmental Services and Palliative/Health Care Providers. Together, they developed resources and a practical toolkit to meet the unique needs of PWIDD.

“Our intention was to build the capacity of professionals to improve the overall palliative experience of PWIDD by ensuring that they are included as an integral part of their own care plan.” (Ontario Palliative Care Network, 2019)

Early Recognition and Listening Beyond Words

Early recognition is key. Knowing a person’s usual routines, preferences, and communication style allows us to notice when something changes. Tools like STOP and WATCH (Indiana Department of Health, 2015) or the Health Watch Tables (Surrey Place, 2019) provide a framework, but it is the confidence to speak up that makes the difference.

Listening beyond words is another lesson I’ve carried with me. For many of the individuals I care for, behaviour is a form of language. A sudden withdrawal, a burst of frustration, or even a quiet smile can reveal pain, comfort, or hope. Seeing behaviour as communication — not as a problem — honours the person’s dignity.

“Care must address the whole person — physical, emotional, social, and spiritual.” (Canadian Hospice Palliative Care Association, 2013)

Bridging Systems and Honouring Stories

Collaboration across systems is essential. Developmental services and health care don’t always align easily, but when they do, the person benefits. Programs like H-CARDD at CAMH (CAMH, 2020) highlight the importance of health equity for adults with developmental disabilities. Self-advocacy groups such as People First of Canada (People First of Canada, 2020) remind us that individuals are more than their diagnosis. They are people whose stories, strengths, and chosen families deserve to be included in every conversation.

Closing Reflections

Looking back, I see how my journey — from volunteer to nurse — has been about learning to recognize change, listen with compassion, and advocate for inclusion.

“My life story deserves to be heard, and my end-of-life journey deserves the same dignity as anyone else’s.” (CHPCA, 2013)

What gives me hope is knowing that more caregivers are embracing palliative approaches that honour each person’s life story and ensure their journey is met with dignity, respect, and compassion.

Canadian Hospice Palliative Care Association. (2013). A Model to Guide Hospice Palliative Care.
Ontario Palliative Care Network. (2019). Ontario Palliative Care Competency Framework.
Indiana Department of Health. (2015). STOP and WATCH Early Warning Tool.
Surrey Place. (2019). Health Watch Tables.
CAMH. (2020). Health Care Access Research and Developmental Disabilities (H-CARDD).
People First of Canada. (2020). Self-Advocacy Resources.