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Open to Vancouver Island Region, Patient partners in the Greater Victoria area
If you or a family member has experience with late-stage cardiac disease or heart failure, we’d like to include you in a working group tasked with development of new model of care that will provide earlier access to supportive palliative care and improve quality of life.
Open to: Patient partners in the Greater Victoria area
Lead Organization or DepartmentShared Care Project
AimThe goal of this initiative is to develop and test a model of palliative care that will improve quality of life for end-stage heart failure patients and their families. This model will assist patients and their families to understand and prepare for the unpredictable nature of heart failure, develop a plan of care to manage symptoms in a manner that improves their quality of life and prevents medical crisis. Patient partners will assist the working group to develop a care model that is reflective of the goals and needs of patients and families.
Level of EngagementThis opportunity is at the level of involve on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will involve patients in planning and design phases to ensure ideas or concerns are considered and reflected in alternatives and recommendations.
- Experience as a patient or family caregiver of a patient with long-term cardiac disease.
- Comfortable participating in a working group setting, including sharing lived experiences.
- Willing to attend meetings at or near Royal Jubilee Hospital.
- If you have a strong interest in this work but have not yet completed a PVN orientation and Volunteer Agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact Leah Smith directly.
- The selection process for this opportunity may include an informal interview between the patient partner and the health care partner.
- Vacancies: 1-2
- Date and time: First meeting to held 0n Friday, September 15, 2017, from 1:00 - 3:00 pm.
- Location: In-Person at or near the Royal Jubilee Hospital, Victoria.
- Time commitment: Three working group meetings,lasting approximately 2 hours.
- Term: September 2017 to January 2018.
ReimbursementPre-approved out-of-pocket expenses such as parking, mileage and public transit will be reimbursed.
BackgroundPalliative care is a comprehensive approach to ease the discomfort, symptoms, and stress of serious or life-threatening illnesses, such as heart and lung conditions. It also provides emotional and social support to patients and caregivers. Palliative care can begin as soon as a person is diagnosed with a condition and has been associated with improvements in patient quality of life and symptoms. For some patients and families, late-stage heart failure can feel like a rollercoaster of symptoms, recoveries and emotions. This can be especially difficult when the patient and family do not know what to expect, or understand the care options available to them. In some cases, patients and their families do not consider palliative care until after a medical emergency. Planning and support from health care providers with expertise in supportive palliative care can improve quality of life and help to manage the heavy symptom burden. This also helps to prevent emergency department visits and hospital admissions which may not be desired by the patient. The working group will guide the development of a proposal for a part-time, 12 to 24 month Supportive Cardiology Service that would serve patients who do not need hospice care, but could benefit from a shift to a symptom-focused approach to care, as well as assistance in understanding and planning for the progression of their illness. This service would also give patients and families the option to consider a palliative approach to care earlier in the trajectory of their illness, rather than after a health crisis. The team hopes that the pilot will have measurable benefits and will help to build the case for a permanent service. While it is expected that the model of care will include a multidisciplinary clinical team, the working group will better define the model. In addition to patient partners, the working group will include physicians (GPs and specialists), a social worker, nurse practitioner, a representative from Island Health’s management team.
Engagement Leader Contact Information
Engagement Leader, Patient and Public Engagement | Southern Vancouver Island