Palliative & End-of-Life Care

The Research Exchange Group on Palliative and End-of-Life care includes members from community, health system, government, and university who share a common interest in palliative and end-of- life care in Newfoundland and Labrador. 

Group Meetings & Presentations

All meetings will be held from 2:00pm to 3:30pm at the NLCAHR Boardroom, 95 Bonaventure Avenue, Suite 300

  • October 30, 2019 at 2pm NST: A roundtable discussion of membership activities, identifying knowledge gaps, and generating new research questions for palliative care research in Newfoundland and Labrador
  • November 27 2019 at 2pm NST: Dr. Susan MacDonald will report from the ASCO Supportive Care Meeting in San Francisco with a review of what’s new in palliative care research
  • January 29 2019 at 2pm NST: Dr. Barb Pesut, University of British Columbia, will share her research on Canadian nurses’ experiences with Medical Assistance in Dying (MAiD)

Previous Meetings

November 21, 2018 | Nav-CARE (Navigation – Connecting, Accessing, Resourcing, Engaging) | Navigating life and aging with chronic illness | Dr. Barbara Pesut, PhD, RN, Professor, School of Nursing, Canada Research Chair (Tier 2) – Health, Ethics and Diversity, University of British Columbia.  | Adults living at home with serious illness, particularly those who do not yet qualify for home-based nursing care, often live with unmet needs and heavy symptom burden resulting in poor quality of life. Many do not know the services that are available to assist them. Previous research by Dr. Pesut’s team demonstrated the value of using trained navigators to visit in the home to provide psychosocial support, education, guidance on advance care planning and connection to community and health resources. These navigators engage older adults to identify the services and resources available and to connect them to those resources using a best-fit, client-centred approach.

 January 16, 2019, Dr. Susan MacDonald discussed what happens within the Newfoundland and Labrador healthcare context when patients request medical assistance in dying and provided an overview of the recent report to the Federal Government on Advanced Directives in MAID.  In June 2016, the Parliament of Canada passed federal legislation that allows eligible Canadian adults to request medical assistance in dying. Since that time, physicians and nurse practitioners have been able to provide medical assistance in dying. Patients must be fully competent at the time of the procedure. The role of Advance Directives in MAID was not included in the current legislation. This talk included information and a discussion about eligibility, informed consent, and where and how MAiD services are provided in this province. Dr. MacDonald also served on the Council of Canadian Academies' international panel which has provided reports to the Government of Canada regarding Advance Directives in MAID.

• February 20, 2019 | Paramedics Providing Palliative Care Initiative with Eastern Health team: Dr. Susan MacDonald, Palliative Medicine, Megan Carey, Project Lead  & Heather Lindsay, Provincial Oversight Coordinator Paramedics Providing Palliative Care is a new initiative where trained paramedics provide palliative care patients with the in-home support they require when having a palliative emergency.

• March 20, 2019Aging and Dying in Place in NL: Next steps for communities interested in becoming a Nav-Care Pilot Site |Co-Presented by Dr. Gail Wideman and Dr. Barb Pesut. |  When Dr. Barb Pesut (UBC) presented on the Nav-CARE project to the Research Exchange Group in NOvember 2018, it was notedthat Dr. Pesut and Dr. Gail Wideman (Memorial University’s School of Social Work) are merging their research interests to establish several Nav-CARE pilot sites here in NL with funding to establish a pilot site in each health region. Many of the group members expressed interest in hearing more about next steps.  On March 20th, Dr. Pesut joined the group again to provide a brief overview of the Nav-CARE Implementation Toolkit and to discuss more specifically how NL communities or organizations might become involved. The Implementation Toolkit was designed to be a user-friendly resource to assist organizations/communities with the successful implementation, ongoing evaluation, and sustainability of a Nav-CARE program. The users of the Implementation Toolkit will include community and organizational leaders (churches, 50+ clubs, age-friendly committees) and/or program managers or those individuals who have responsibility for starting and/or expanding programs in their organization and community. LINK TO SLIDES

• April 17, 2019 | New Research Project: Patient and caregiver experiences with end-of-life care-at-home programs Pablo Navarro and Wendy Lasisi, Research Officers with the Contextualized Health Research Synthesis Program (CHRSP)  are embarking on research into the experiences of patients and families who chose to have a death at home compared to a death in hospital. The proposed research question for this study was:

“What are the experiences of patients and families who utilize the end of life program for a death at home compared to the experiences of those who have a death in a health care facility?”

To support this research, they used the April meeting to:

• Review the Evidence in Context methodology
•Discuss preliminary findings in the current literature on the topic and ask for suggestions about additional sources of information on the topic
• Identify potential health system and community partners who could consult with the research team
• Ask about current end-of-life services available in the province
• Ask  about potential contextual variables that may have an impact on the findings

• May 22, 2019 | Topic TBA

Links & Resources:

Group Objectives:

To bring a diversity of perspectives to the subject: To break down silos and bring diverse perspectives and expertise to bear on research, public engagement, teaching, and learning about palliative and end-of-life care.

To encourage and promote collaboration and networking: To collaborate and work cooperatively across community and university disciplines to share information.  The group recognizes the strength that teamwork will bring to practice, research, and to developing best practice approaches to palliative and end-of-life care.

To exchange knowledge: To be a forum for the exchange of research and practice knowledge that will support the development of best practices in palliative and end-of-life care, including: research in progress, existing research literature, and emerging evidence.  All evidence will be considered  in light of the unique Newfoundland and Labrador context in which access to palliative and end-of-life services may be very different, depending on where people live.

To build research capacity: To promote community collaboration and research readiness, to ensure that research teams can connect with health and community partners on issues identified by the group, to uncover knowledge gaps and opportunities for research.

To identify and promote opportunities for education: To identify educational opportunities and gaps in training and support for palliative care provided in both community and healthcare contexts.

To consider MAID: To include in its focus research that looks into Medical Assistance in Dying, including issues of policy and ethics 

To uncover and share best practices: To share information on best practices in palliative and end-of-life care in Canada and globally. 

To identify services and programs and to support community and practice: To share information about supports, programs and initiatives being undertaken provincially to inform clinical practice and to improve access to information for people in palliative and end-of-life care and their families.  What can be done to help caregivers dealing with death an dying at work or at home? Nurses and other healthcare workers may be dealing with multiple deaths a week or even a day-- we need to consider strategies that will help them cope and will combat compassion fatigue and burnout.

To start an important conversation: The group will discuss strategies to promote early palliative care and to combat palliative care stigma including ways that community and health system partners can  approach conversations with patients, families and loved ones about palliative care, including promoting and encouraging people to consider advance care directives.  

Contact

Newfoundland & Labrador Centre for Applied Health Research

230 Elizabeth Ave, St. John's, NL, CANADA, A1B 3X9

Postal Address: P.O. Box 4200, St. John's, NL, CANADA, A1C 5S7

Tel: (709) 864-8000