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Putting the needs of patients and families at the centre of the hospice palliative care system

                                                                                                                           
Recently, the Ontario Palliative Care Network (OPCN) announced the launch of their Action Plan 1: 2017 – 2020. The Action Plan outlines the work that will be undertaken across the Province, to ensure that quality hospice palliative care services are readily available and easy to access for people with life-limiting illness, and supports for their loved ones.

“I wanted to ensure that Mom’s last days and weeks rolled out the way she wanted them to. The people who cared for her were wonderful but we struggled to understand the system and processes to get her the care she needed,” recalls Denise Reynolds, who cared for her mother Marjorie after she was diagnosed with stage four lung cancer.

She detailed their struggles. “It was confusing to say the least. There were so many care providers – her family physician, oncologist, palliative care doctors, nurses, caseworkers, technicians, therapists and supervisors – but no one to take control or tell us what the next step could or should be.”

There are 38 actions outlined in the new provincial plan, with 22 of these touching on work that regions will support and move forward with over the next few years. The South East Regional Palliative Care Network (South East RPCN), is responsible for delivering on these actions with shared leadership between the South East Regional Cancer Program (SERCP), the South East Local Health Integration Network (LHIN), and in partnership of all of our regional community stakeholders, health service providers, health systems planners, patients, families and caregivers who have role in hospice palliative care in our region.

The regional network has begun looking at improvements guided by a hospice palliative care regional work plan, which is aligned to the provincial Action Plan.

“There are regional teams currently focused on improvement initiatives in five identified regional palliative care priorities,” says Brenda Carter, Regional Vice President South East Regional Cancer Program. “Each of the initiatives will involve the patients and caregivers voices to better understand the current challenges and define the approaches that will be taken to address them.”

 “The OPCN Action Plan and the South East RPCN Work Plan are aligned with Patients First: A Roadmap to Strengthen Home and Community Care, which highlights a commitment to improved access and equity in palliative and end-of-life care at home and in the community,” said Paul Huras, CEO, South East LHIN. “The regional plan will identify effective ways to better connect hospice palliative care services and improve the overall patient and caregiver experience.”

Denise speaks out about her experiences to raise awareness of the challenges facing people like her mother, and to advocate for those who need palliative care services. “My hope is that going forward, patients and their caregivers will be asked what they need to know, and receive concrete answers and directional information. I think significant improvements can be made by remembering to put the needs of patients and families at the centre of the system.”