Patient Advisor and Speaker, Early Serious Illness Conversations Project

Have you had a family member with a serious illness admitted to the hospital? Did the hospital care providers explore goals, fears, priorities, acceptable trade-offs, and family understanding of the illness? Help our research project to improve early engagement in serious illness conversations at St. Paul’s Hospital, so that patients’ voices are heard and they’re treated how they want to be treated.

Open to: Patient partners in the Lower Mainland & Fraser Valley

Lead Organization or Department

Providence Health Care, St. Paul's Hospital — Acute Medicine, Nursing

Aim

Our research project aims to increase engagement in early serious illness conversations on medical units, so that patient goals and wishes can be addressed before it's too late, such as if the patient becomes too sick to talk or stay awake. We are recruiting patient partners to share their story of a serious illness conversation (or lack of) when it was needed during their family member's hospitalization.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement. The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

• Comfortable sharing your story with ~10 staff on a medical unit
• Care experience with Providence Health Care or the Vancouver area hospitals is preferred
• Experience with a family member being hospitalised for a serious illness (serious illness is a condition that carries a high risk for death, and may cause physical, mental, and social strains on the patient's life)
• Access to a computer for emails is required

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 the engagement leader directly.

Logistics

Number of vacancies: 2 Where: St. Paul's Hospital in downtown Vancouver Commitment: Share the story about your experience of a family member being hospitalised for a serious illness and and experience. Date TBA, most likely March 29, 2019, to an audience of ~10 staff on medical unit.

Reimbursement

Expenses related to travel (e.g. transit, parking up to $18/day, approved mileage up to 60 km each way) to attend meetings will be reimbursed by Providence Health Care.

Background

Our project hopes to promote “more, earlier, and better” serious illness conversations to minimize discrepancies between patients’ wishes and actual end-of-life care. We saw that patients on our units were getting sicker, and some were going through treatments that caused pain and suffering. We also saw that many of these sick patients didn't get a chance to voice their wishes, where they otherwise may have not wanted all these painful treatments. We aim to address these issues on our acute care units through our research project. This opportunity has come about as part of the Providence Health Care Research Challenge. The team consists of a manager, social workers, and front-line nurses. Read more on the components of a serious illness conversation as developed by Ariadne Labs here.

Health Care Partner Contact Information

Karen Estrin
Engagement Leader, Patient and Public Engagement | Lower Mainland & Sunshine Coast
604.668.8245
kestrin@bcpsqc.ca