Palliative & End-of-Life Care

 

Picture of someone in a wheelchair on a grassy hill, their caregiver is tipping the chair back, and they are both watching the sunset.

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.

See Group Activities and Presentations

See Additional Resources

Group Conveners

  • Dr. Gail Wideman—Associate Professor, School of Social Work, Memorial University
  • Dr. Susan MacDonald—Associate Professor Medicine & Family Medicine, Faculty of Medicine, Memorial University

Goals & Objectives

The Research Exchange Group on Palliative and End-of-Life Care aims to:

  • Apply a range of diverse 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
  • 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
  • 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
  • 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
  • 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
  • Consider MAID: To include in its focus research that looks into Medical Assistance in Dying, including issues of policy and ethics
  • Uncover and share best practices: To share information on best practices in palliative and end-of-life care in Canada and globally
  • 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
  • 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

 

Activities & Presentations

December 19, 2023 | 1:30PM to 3:00pm Newfoundland Island Time |Update from Pallium Canada | Indigenous -Informed Training Modules in Palliative Care | In January of 2022, we welcomed a presentation by Indigenous Scholar Dr. Cynthia Wesley-Esquimaux and by Mr. Jonathan Faulkner on behalf of Pallium Canada about a project  to create a learning module for Palliative Care Training that will be inclusive of Cultural Safety, Cultural Intelligence and Cultural Humility for the use and benefit of palliative care professionals working with Indigenous peoples in Canada. The team, aware that the sharing of Indigenous knowledge and traditional practices is a sensitive and personal decision for every individual, launched the initiative in NL by opening up a dialogue and seeking guidance and suggestions from people who are currently working in, or directing palliative care, as they began the process of engaging with communities directly through online and in-person discussions. This follow-up meeting covers the balance of the learning modules for this project. Dr. Wesley Esquimaux and Jonathan Faulkner share the outcomes of their in-person visits with communities in Labrador to complete interviews and the results of some interviews which were conducted online.  They note that this work requires the building of trust and engagement, which takes time and patience and are they were ultimately able to gain confidence and support for the project among people living in Indigenous communities and that nurses, in particular, were exceptional supporters of the learning process. | About our Presenters:  Dr. Cynthis Wesley-Esquimaux is a faculty member at the Banff Centre for the Arts and Creativity and has maintained working relationships with several Canadian institutions and corporations across Canada.  Cynthia Wesley-Esquimaux served as Vice Provost Indigenous Initiatives at Lakehead University for three years and was appointed as the 1st Indigenous Chair for Truth and Reconciliation for Lakehead University in 2016. Cynthia was inducted as an “Honourary Witness” by the Truth and Reconciliation Commission of Canada in 2014 and is Chair of the Governing Circle for the National Centre for Truth and Reconciliation at the University of Manitoba. She is a member and resident of the Chippewas of Georgina Island First Nation and has dedicated her life to building bridges of understanding. She sees endless merit in bringing people from diverse cultures, ages, and backgrounds together to engage in practical dialogue and applied research initiatives.  Jonathan Faulkner, VP Operations, Pallium Canada | Pallium Canada is a national, non-profit organization focused on building professional and community capacity to help improve the quality and accessibility of palliative care in Canada. Pallium is a community of clinicians, educators, researchers, carers, administrators, volunteers, Indigenous leaders and citizen advocates working together to accelerate the integration of palliative care in Canadian communities and health care systems. Pallium was founded in Canada, by Canadians and in service to Canadian health care professionals, patients and families and communities. As VP Operations, Jonathan is responsible for the day-to-day leadership and general management at Pallium. Jonathan is excited to bring his 15 years of combined experience in health research, government administration, partnerships, and business development to help advance the palliative care approach in Canada.

November 20, 2023 at 12:30PM | Dignity Therapy: Alleviating Emotional and Physical Distress at End of Life| Amanda Devlin, MSW RSW is a compassionate and culturally-sensitive professional with over 15 years of experience in the field of social work. Drawing on  specialized training , lived experience, and expertise, she provides comprehensive and effective therapeutic care in a variety of settings. Ms. Devlin will talk with the group about Dignity Therapy and its role in supporting palliative patients. This presentation will provide you with the opportunity to learn about the value of Dignity Therapy in alleviating both emotional and physical distress during end-of-life. | Dignity therapy is an evidence-based, clinically effective intervention for terminally ill patients.  Experiencing an irreversible illness may lead to a loss of autonomy, physical pain, and challenging existential and spiritual experiences, all of which can contribute to disintegration of a patient's sense of self.  Harvey Chochinov, a Canadian psychiatrist who specializes in palliative care, is widely credited with putting forth the theory behind—and the practice of—dignity therapy. Dignity is synonymous with terms such as self-esteem, self-worth, and self-respect—it is a complex and multifactorial concept that encompasses physical independence, cognitive acuity, self-pride, and autonomy. Among patients with terminal conditions, the undermining of dignity often results from psychiatric symptoms including anxiety and depression, worry and guilt and a sense of hopelessness. Moreover, loss of a sense of meaning, feelings of burdening others, spiritual distress, and loss of dignity have been found to correlate with patients' requests for hastened death. It is believed that existential distress experienced by dying patients, manifesting as various cognitive and affective states and by the symptoms mentioned above, threatens both the meaning given to life and the coherence of one's sense of personhood. Dignity therapy strives to address these problems. Dignity therapy is a brief, individualized intervention designed to engender a sense of meaning and purpose among patients with terminal illness, thereby reducing distress in this patient population. At its core, it offers patients an opportunity to speak about issues that matter to them most and about the aspects of their lives they wish to be remembered for. [SOURCE]

November 24 2022 at 12:30PM Newfoundland Time |Advance Care Planning for the End of Life | In this presentation of the Research Exchange Group on Palliative and End of Life Care, we’ll talk about planning for end of life. Death is an inescapable but unifying human experience. The journey there, however, is uniquely personal.  Value-based advance care planning is a process that can support one’s journey, ensuring who they are is reflected in their care plan. As part of a Master’s of Social Work Pathways project, Alison Judd has created an educational module to improve healthcare professional’s communication and understanding for value-based advance care planning. Improving healthcare professional’s communication around death, dying and value-based advance care planning is the primary goal of the education module.  Learn about this project as Alison shares her research and practice in supporting improved end of life care in Newfoundland and Labrador.

April 13, 2022 | 12:30pm Newfoundland Time | Advance Care Planning:  Improving care by thinking ahead |Alison Judd, MSW student, Memorial University now working with the Palliative Care Program in Western Health | Advance Care Planning (ACP) is more than just a written document listing what medical procedures one is willing to endure or who they have chosen to make medical decisions on their behalf. Advance care planning is a process that evolves through conversations, experiences, and reflection. ACP also presents a unique opportunity to have a better picture and understanding of who each patient is, not just by their diagnosis. ‘My Reflection Guide’ was created as a tool to help patients and families reflect on what is important to their quality of life.  As a focus for her MSW Pathways course, Alison Judd is developing an educational module on ‘Improving Advance Care Planning Conversations for Front Line Health Professionals’. Through her recent MSW placement with the Palliative Care program in Western Health, Alison has witnessed the intensified emotional stress that happens to patients and residents when advance care planning conversations have been inadequate or avoided. It is through the creation of an educational module that she is optimistic more front-line health professionals will have the knowledge, competence, and comfort to have ACP conversations with persons served throughout the healthcare system.  This presentation is a prequel to the fully-developed educational module on Advanced Care Planning for Healthcare professionals.

January 20, 2022 at 2:00pm NST | Presentation & discussion to inform a Pallium Canada project on palliative care for Indigenous Peoples in Labrador and in Newfoundland with Dr. Cynthia Wesley-Esquimaux of Lakehead University

Cynthia Wesley-Esquimaux, Ph.D., from the Chippewas of Georgina Island First Nation, a professor at Lakehead University in Ontario, is working with a small team— Ms. Tareyn Johnson, MA, University of Ottawa, and Ana Gonzalez, MA Candidate, Lakehead University— under contract with Pallium Canada, to create a learning module inclusive of Cultural Safety, Cultural Intelligence and Cultural Humility for the use and benefit of palliative care professionals working with Indigenous peoples in Labrador and Newfoundland. This team is aware that the sharing of Indigenous knowledge and traditional practices is a sensitive and personal decision for every individual. Therefore, they will appreciate any guidance and suggestions from those individuals who are currently working in, or directing palliative care, as they move forward to engage communities directly through online and in person (when possible) discussions. The intention of this gathering will be to engage in a dialogue with as many people as possible and to respect the knowledge and design suggestions offered as the team develops culturally-enhanced module content for Pallium Canada. About the presenter: Dr. Cynthia Wesley-Esquimaux is a former Vice-Provost (Aboriginal Initiatives) at Lakehead University, Thunder Bay and Orillia where she is now the Indigenous Chair on Truth and Reconciliation. She held the Nexen Chair in Aboriginal Leadership at the Banff Centre in Alberta 2008-2013, and remains a faculty member on Right Relations and Wise Practices. She is a Status Only Asst. Professor at the Faculty of Social Work, University of Toronto, and an Adjunct Asst. Professor at Lakehead in the Department of Anthropology. She is currently the Chair and a board member for Teach for Canada. She is an Honourary Witness for the Truth and Reconciliation Commission of Canada, and Chair of the Governing Circle for the National Centre For Truth and Reconciliation at the University of Manitoba. She is an active and engaging media representative, is interested in environmental and humanitarian causes, and is actively engaged in a variety of initiatives across Canada. Her teaching and academic writing is directed towards understanding Historic and inter-generational trauma and unresolved grief within the Indigenous community. She is a member of the Chippewa of Georgina Island First Nation on Lake Simcoe. Cynthia has dedicated her life to building bridges of understanding and sees endless merit in bringing people from diverse cultures, ages, and backgrounds together to engage in practical dialogue. She is deeply committed to public education and active youth engagement, and co-founded the Canadian Roots Exchange www.canadianroots.ca now known as CRE.ca.

 2021

May 19, 2021 | Patshitinikutau Natukunisha Tshishennuat Uitshuau (A Place for Elders to Spend their Last Days in Life): Developing an Innu Approach to Palliative Care | Dr. Russell Dawe, Dr. Xixi Gong , and Mr. Jack Penashue | The group learned about this community-based, patient-oriented research project investigating the cultural needs and practices of the Innu in Sheshatshiu, Labrador regarding end-of-life care. The project was conceived by members of the community and conducted with guidance and leadership from an Innu Advisory Committee. The objectives of this research were to: 1) Describe the cultural and spiritual practices of the Innu as they relate to death and dying; 2) Describe current end-of-life medical and community services available; 3) Compare rates of home and hospital death for Innu and non-Innu communities in Labrador; 4) Identify aspects of current end-of-life care that serve or fail to serve the needs of the Innu; and 5) Explore ways of bringing Innu cultural and spiritual practices together with end-of-life healthcare delivery to ensure more culturally safe care going forward. This presentation reviewed the methods and especially the findings from this research, with opportunity for interactive questions and answers. This project is a collaboration between the Innu Nation, Sheshatshiu Innu First Nation, Labrador-Grenfell Regional Health Authority, Memorial University’s Faculty of Medicine, and the Labrador Institute. |

February 25, 2021 | The Pastoral & Palliative Care Volunteer Online Training Program | Dr. Richard Singleton, Queen’s College Faculty of Theology and Lewis Stoyles, Order of St. Lazarus | This session provided an overview of a collaborative initiative of Queen’s College, the Order of St. Lazarus, and Eastern Health to develop and offer an on training program for pastoral and palliative care volunteers. The program was designed to provide interested people with the information and skills needed to be competent and confident in their volunteer work and ministries of supportive visitation and care to individuals and families in times of illness, death and bereavement. Weekly webinars include reflections on readings, discussion of topics such as Communication & Listening, Confidentiality, Discernment for Effective Pastoral Care, Visitation to Residents in Long Term Care, Mental Illness, Mental Health Legislation & Community Resources for the Mentally Ill and Substance Users, Pastoral Care for those with Active Mental Illness and Addictions, End of Life Matters & Palliative Care, Grief, and Care for the Care Giver. | Link to Presentation | Link to Home Support Program Brochure | 

January 12, 2021 | Palliative Care Research in Canada | James Downar, MDCM, MHSc, FRCPC, Head, Division of Palliative Care, University of Ottawa | Link to Project |

2020

October 13, 2020 | The Newfoundland and Labrador Context for Palliative and End of Life Care: A Focus Group Discussion | Researchers at NLCAHR's Contextualized Health Research Synthesis Program (CHRSP) consulted the group about a project they had been working on- An Evidence in Context Report on Experiences in Palliative Care: Home vs. Healthcare Settings. |

November 10, 2020 | The Last Line of the Story: Reshaping the Conversation around Palliative Care | Hilary Turpin, MUN Medical School | Presenter discussed her dissertation on palliative care which won the Medical School Essay Award for 2020. | Link to Presentation |

January 19, 2020 | Update from the Canadian Society of Palliative Care Physicians | Dr. James Downar |

2019

January 29 2019 | Canadian Nurses’ Experiences with Medical Assistance in Dying: Lessons from the Field | Barbara Pesut PhD, RN is a Professor in the School of Nursing at the University of British Columbia, Okanagan and holds a Canada Research Chair in Health, Ethics, and Diversity | A team of Canadian nursing research and policy leaders, supported by an international group of co-investigators, undertook a three-year study (2017-2020) of Canadian nurses’ experience with MAiD. The team interviewed 59 nurses that included registered nurses and nurse practitioners from both urban and rural settings, across provinces, and with various experiences around engaging with patients considering, applying for, awaiting and/or undergoing MAiD. This presentation discussed findings related to the policy, practice, and ethical issues experienced by nurses with this new end-of-life option.  | Link to Presentation |

January 16, 2019 | MAiD in NL | Dr. Susan MacDonald | This presentation 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. |

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 | Link to Presentation |

March 20, 2019 | Aging and Dying in Place in NL: Next steps for communities interested in becoming a Nav-Care Pilot Site | 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 noted that 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 Presentation |

April 17, 2019 | 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) | The presenters are researching the experiences of patients and families who chose to have a death at home compared to a death in hospital. | Link to Presentation |

2018

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. | Link to Presentation |

Links & Resources