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Steering Committee Member, Compassionate Care Alliance of BC

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Open to Provincial Region, Patient partners across BC

Last updated

Do you have an interest in ensuring that all British Columbians have access to and receive quality, responsive hospice palliative care when they are living with serious illness? Do you believe that people should be able to die with dignity, free of pain, surrounded by their loved ones and in the setting of their choice?

Open to: Patient partners across BC

Lead Organization or Department

BC Hospice Palliative Care Association

Aim

Our aim is to develop an alliance of provincial partners interested in advancing and championing access to quality hospice, palliative care for all British Columbians facing life-limiting conditions and support to their families. We intend to use the background and working documents of the Quality End of Life Care Coalition of Canada (QELCCC) 2016-QELCCC-Annual-Report-final.pdf  as a starting point for our discussions. The Alliance will reflect a provincial (not national) perspective. Our goal would be that the Alliance Members, working together would identify and prioritize advocacy issues and develop and act on strategies to address them. The purpose of the patient partner’s involvement in this initiative is to ensure that we never lose sight of who we are working to support, British Columbians who are dying and their loved ones who are grieving. The patient partner will be a full Member of the Alliance Steering Committee and will be involved and participate in all discussions as we work together to develop an effective Alliance. We are at the point of activating the Steering Committee, whose role will include identifying: the Alliance Title, drafting the Alliance Mandate, identifying potential Alliance Members, clarifying decision-making strategies and voting options, planning for a launch event, and for ongoing sustainability. The request for a patient partner is to join us as a Member of the Steering Committee so that their ideas and concerns are reflected in the work of the Steering Committee and its recommendations.

Level of Engagement

This opportunity is at the level of collaborate on the spectrum of engagement. The promise to you is that the research partner will work together with you to formulate solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible.

Eligibility

  • Experience with hospice, palliative and end of life care in British Columbia
  • The patient partner should be a patient, family member and /or caregiver and are sufficiently far along in their grieving process to have conversations about end of life
  • Patient partners should be comfortable speaking with a diverse range of health care providers, leaders, and other stakeholders
  • Patient partners should have previously attended a PVN orientation session

Logistics

  • Vacancies: 1
  • Date/Time: Meeting dates and times will be scheduled around Steering Group Members availability (including the patient Partner). Initiative Launch will take place April 11 in the lower mainland. There will be 2-3 meetings booked prior to the launch, with monthly meetings following.
  • Location: Meetings will take place in person (in Vancouver) with an option for teleconference participation if the patient partner does not reside in Vancouver.
  • Patient partners are asked to be committed for 7 months – 1 year

Reimbursement

  • For regular meetings taking place in Vancouver, mileage, transit, and parking will be covered by BCHPCA if the patient partner lives in Greater Vancouver. Alternatively, there will be the option to attend meetings via teleconference.
  • For the launch event on April 11, approved travel expenses for non-local patient partners will be fully reimbursed as per BC Hospice Palliative Care Association expense reimbursement policy.
  • BCHPCA has the ability to pre-pay certain expenses when required and to manage reimbursement with a quick-turnaround.

Background

The need for a Compassionate Care Alliance of BC has been identified due to:
  • An aging population, with annual deaths expected to increase
  • Significant advances in the treatment of serious illnesses so that many people are living longer with chronic illness or fragility
  • A growing focus on advanced care planning and shared decision making
  • The high cost of “futile” procedures and treatments at end of life
  • The culture shift from patients to consumers of healthcare with increased expectations regarding choices for care
  • The need to integrate palliative care at time of diagnosis, and
  • The increasing cost of health care; changes in funding agreements and an emphasis on home and community care
The Steering Committee will include representatives from:
  • Canadian Cancer Society, BC and Yukon Division
  • BC Centre for Palliative Care
  • Alzheimer Society of BC
  • Family Caregivers of BC
  • BC Hospice Palliative Care Association (Secretariat)
  • A patient partner, via the Patent Voices Network

Engagement Leader Contact Information

Teresa Bissenden
Engagement Lead, Provincial | Patient & Public Engagement
BC Patient Safety & Quality Council
W 604.668.8253 | C 604.307.1342

From Our Community

Karla Warkotsch

Patient Experience Consultant – Interior Health

Karla Warkotsch

The question I like to ask health care employees is ‘Who is this for?’ and ‘Do we have the right people at the table?’ As a health care employee, I see how easy it is to fall into doing for, rather than doing with patients. The voices of the patient, family and caregiver are essential to ensure the patient is central to the direction and focus of the work being done.