By: Allison Currie
Hospice plays an important role in providing compassionate support for individuals facing end of life, ensuring comfort, dignity and quality care. The care itself focuses on managing not just physical symptoms but the mental, emotional and spiritual needs of patients. By shifting the focus from prolonging life to enhancing quality, hospice helps people live as well as possible during their remaining time.
Situated near Cape Breton Regional Hospital and part of the Nova Scotia Health palliative care network, Hospice Cape Breton offers a welcoming environment with ten patient rooms designed to provide the comforts of home. Patients can also enjoy the beautiful outdoor area featuring the expansive Circle of Care gardens, sculptures and landscaping. An idyllic environment for patients and their chosen family to navigate end of life.
The challenge, however, lies in ensuring that every person who arrives at hospice is recognized as a unique individual, with their own hobbies, interests and sources of joy. How can we honor and celebrate the individual personalities that arrive at hospice?
It was one evening, while watching an episode of The Resident, that a chord was struck with Lisa McNeil Campbell, Palliative Care Volunteers Program Lead, and she found herself asking that very question. During the episode she noticed that on the glass wall of an emergency room, staff had written a brief personal note about a patient. Something like, “This is Mary, Mary loves flowers and long walks.” It was a simple, yet deeply meaningful way to see Mary as more than just a patient. That small gesture sparked an idea for Lisa as Cape Breton Hospice prepared to open its doors in 2021.
Lisa brought her idea to Dr. Anne Frances D’Intino, Palliative Care Physician and current Interim Hospice Medical Director, to explore whether such personal details were already being collected. When they realized there was no formal process in place, Lisa knew she wanted to pursue it. However, questions remained: How do we gather this type of non-medical information that isn’t being captured in the current process? How do we store it? How do we share it with staff?
Working closely with the hospice team, Lisa and Dr. D’Intino spent time refining a set of questions designed to create personalized care plans. The result was the Personal Patient Assessment Tool (PPAT), a two-page document asking meaningful questions, such as:
- What types of food do you enjoy?
- Do you prefer baths or showers? Morning or evening?
- What brings you peace? Are there personal items that should be in your room?
- What brings you joy?
- Are you spiritual or religious?
- What sports team do you follow?
“It may seem like a small thing,” Lisa reflects, “but the patients and their families appreciate it so much. Last year, we learned that Halloween was a patient’s favorite day of the year. We filled her room with every Halloween decoration we could find—it meant the world to her.”
Lisa even reaches out to artists when patients mention they are fans, going as far as contacting Michael Bublé and George Clooney (although she’s still waiting on a response!).
The PPAT quickly became an essential part of person-centered care at Hospice Cape Breton. Recognizing its potential, Lisa presented the tool at a Provincial Palliative Care Network meeting, where the idea was met with enthusiasm. The network team encouraged Lisa and Dr. D’Intino to pursue a QEII Foundation Translating Research into Care (TRIC) grant to explore the potential for a broader impact.
These grants support research that helps turn clinical science into real-world improvements in health care. By funding projects focused on better health policies, service delivery and patient care, they are bringing positive changes across Nova Scotia Health.
The grant was secured, but the team faced a new challenge; they needed someone with research expertise to guide the project. That’s when the network team approached Mary Ellen Macdonald, PhD, who had recently moved back to Nova Scotia to take up the inaugural J&W Murphy Foundation Endowed Chair in Palliative Care. Because she had seen Lisa’s presentation, she was immediately on board.
“It was a no-brainer for me,” Dr. Macdonald recalls. “I was captivated by the simplicity and the deep commitment to person-centered care that this tool embodies.”
With Dr. Macdonald’s involvement, the research began. The team conducted a national survey, asking other hospices and palliative care units if they used similar tools, and consulted the global community, through the World Hospice Palliative Care Alliance. The responses made it clear that there are few tools like the PPAT in circulation, with sites responding: “This sounds so useful - can we have a copy of your PPAT?”
In summer 2024, Dr. Macdonald visited Hospice Cape Breton to gather feedback from staff, clinicians, family members and a patient. One of her key questions was whether the PPAT created unrealistic expectations. Would knowing so much about a patient lead to increased work to find ways to honour these personal touches? But the feedback was incredibly positive, with staff and volunteers saying the tool enhanced care and actually saved time. It took a lot of guesswork out, providing icebreakers for initial conversations (such as, I hear you like golden retrievers!) which helped to build more immediate trust, and it also helped with logistics, such as meal planning.
While research is still ongoing, the PPAT has now been in use for two years at Hospice Cape Breton, and it’s proven beneficial in elevating patient care. The ultimate goal is to share the PPAT with local, national and international partners, hoping it will become a standard in enhancing the patient experience across hospices and palliative care units worldwide.
By embracing the personal stories behind each patient, Hospice Cape Breton is showing that even the smallest gestures can make a world of difference.
Research is care, and clinical studies help translate research into potentially life-changing therapies that can help you, your friends and your loved ones. Want to know more about how to get involved? Visit Nova Studies Connect today: novastudiesconnect.ca
