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Partnering with palliative care patient and family advisors

The Freeman Centre for the Advancement of Palliative Care, based at North York General Hospital (NYGH), has been recognized as a Leading Practice by Accreditation Canada for delivering high quality care to patients and families. Under the leadership of Anna Tupis, Program Director of Ambulatory, Cancer and Transitional Care Programs at NYGH, the Freeman Centre has introduced a holistic care model. This model has contributed to earning its Leading Practice designation, including the way in which patient and family advisors (PFAs) have been integrated into the program's day-to-day operations in a meaningful way since 2012. To our knowledge, the PFA role at the Freeman Centre is the first of its kind reported in palliative care programs Canada-wide.

NYGH PFAs are volunteers who have either received care at NYGH or they are family members and caregivers of former patients. The role involves sharing patient, family, and caregiver perspectives in various ways, such as serving on hospital committees, participating in recruitment processes or reviewing patient educational material. PFAs are critical to NYGH's culture of Patient- and Family-Centred Care (PFCC), as they partner with staff and physicians to ensure that the voices of patients and families are incorporated in decision-making processes across the hospital.

In the fall of 2018, Dr. Daryl Roitman, Physician Lead for the Freeman Centre, and Shana Haberman, Project Coordinator, looked at the role and impact of palliative care PFAs at the Freeman Centre. They presented a poster at the International Congress on Palliative Care in Montreal that explored the motivation behind patients and family members advising in this capacity and the myriad ways that the palliative care program at NYGH benefits from having their voice at the table.

Currently, four PFAs volunteer with the Freeman Centre. They are all family members of patients who received palliative care either in the inpatient or home-based outreach setting, and are part of the hospital's larger community of PFAs.
 
Arshag Tokmanian, Michelle Hannikainen and Judy Katz, Freeman Centre Patient and Family Advisors, share their perspective with the Freeman Centre’s clinical and administrative team with the goal of improving care for palliative patients and their families.
Arshag Tokmanian, Michelle Hannikainen and Judy Katz, Freeman Centre Patient and Family Advisors, share their perspective with the Freeman Centre’s clinical and administrative team with the goal of improving care for palliative patients and their families.

“The value of the work carried out by NYGH's palliative care PFAs cannot be overstated,” said Shana. “Our dedicated volunteers selflessly share their time and energy with the hospital with the goal of improving the care experience of patients and families. They help to ensure that our team functions with a more PFCC lens.”

As members of the Palliative Care Steering Committee, the advisors provide regular and ongoing consultation to the Freeman Centre and direction on the palliative care strategy. They review all written and electronic materials (brochures, information guides, fundraising materials and program webpages). When six Freeman Centre patient rooms and the Freeman Patient and Family Lounge and Meeting Room were redesigned five years ago, the PFAs provided input into how the space should look and feel from the perspective of patients and families. The PFAs are regularly consulted on how best to share and disseminate information to patients and families, and are encouraged to share unsolicited advice and general feedback.

“There is a big chasm between the hospital, and patients and families,” said Arshag Tokmanian, palliative care PFA. “They operate on two different levels – the advisors help to bridge this.”

Palliative care PFAs have all been through the painful process of losing a close family member and have seen firsthand the benefits of good palliative care at end of life. Having gone through this journey, they are empathetic to the experience of patients and families and often shed light on ways the Freeman Centre can improve.

Through their advocacy work on behalf of patients and families, palliative care PFAs gain immense satisfaction from their role. Having a seat at the table to share their ideas and opinions is meaningful and for them, an important way to give back to the hospital.

“For me, it's bringing a voice to those who might not be able to advocate,” said Brenda Albuquerque-Boutilier, Freeman Centre PFA. “The work is in memory and honour of my dad, who might have been challenged due to his heritage, so I am turning that experience into something meaningful and positive.”

Looking to the future, the Freeman Centre team is keen to increase the engagement and input of its PFAs, specifically in the area of quality improvement. With seven years of experience working with PFAs, the Freeman Centre is an example of how everyone benefits from bringing together different perspectives to improve care.