Strengthening a Palliative Approach in Long-Term Care

How do we address the issues of health equity when jurisdictional issues create a gap between two systems of care? We spoke with Holly Prince about the barriers to care for Indigenous peoples, and the importance of equitable access to palliative care within Indigenous communities.Holly Prince is an Anishinaabekwe  and a member of Opwaaganisiniing  in Northwestern Ontario. She has a Master's Degree in Social Work and is a Ph.D. Candidate in Educational Studies at Lakehead University. Holly's research focus is on decolonial and Indigenist education and health, and community-based research. Holly is the Lead for the Indigenous People's Health and Aging Division at the Centre for Education and Research on Aging and Health, Lakehead University, where she works as a Project Manager. A part of her role involves planning, implementing, and evaluating palliative care education and health equity initiatives for Indigenous peoples across Canada. Holly is also the Project Lead for the Canadian Virtual Hospice's LivingMyCulture.ca project.Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

A Green Care farm is a combination of agricultural activities and a population that could benefit from time in the outdoors. Green Care Farms CEO and Founder Rebekah Churchyard provides outdoor day programs for people with dementia, connecting them with nature on a farm in Milton, Ontario. The program includes planning and planting sensory gardens, and growing food for the local food. She says that research shows that these types of programs can result in a delay in admission to long-term care, while building psycho-social wellbeing.Rebekah holds a Master of Social Work in Gerontology, and works in Specialized Geriatric Services. Rebekah is also a Project Management Professional (PMP) and Psychotherapist. She relocated from Toronto back to Kitchener-Waterloo in 2020 on a mission to start Green Care Farms Inc.! In Toronto she gained extensive volunteer experience in charitable board governance and in municipal policy. Rebekah served as President and Vice-President with the Toronto Council on Aging Board of Directors and as an Accountability Table member with the City of Toronto's Seniors Strategy. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

How do we better support family, friends, and long-term care staff as they grieve the death of a long-term care resident? Joe Peters is a funeral director with more than 35 years of experience at funeral homes in Toronto. He has supported many family members and friends through grief, and he has also experienced a wide range of approaches to honoring the deaths of residents in long-term care. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Living with a disability can add extra complexity in health care settings, especially if communication is a challenge. Carrie Batt draws from her personal and extensive professional experience within the developmental disability sector to offer end of life care, support and planning for people across the disability spectrum. She helps people navigate systems for equitable and quality healthcare, and provides disability-informed end of life and grief support through her business. Seoul Care. Carrie also educates presents and rights for the disability, death, care, and bereavement communities about how untapped the topic of death, dying grief, loss, and disability currently remains. Seol Care: https://seolcare.ca/Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

How do we ensure that Indigenous people receive palliative care that aligns with their culture and spirituality? In this episode, guest host and researcher Mary Lou Kelley has a conversation with Jeroline Smith, a retired nurse, Elder and Knowledge Keeper who has made significant contributions to palliative care for Indigenous people. Jeroline talks about the importance of community, the need for more training and resources, and the need for more long-term care homes in Indigenous communities.Jeroline Smith is a retired nurse currently working as an Elder and Knowledge Keeper to advise the work of Canadian Virtual Hospice, the Lakehead University Centre for Education and Research on Aging and Health, and the regional home care program in Manitoba. In 2019, she received the Award of Excellence from the Canadian Hospice Palliative Care Association, and has made significant contributions to several national palliative care initiatives.Since 1972, researcher Mary Lou Kelley  has been engaged in gerontology and palliative care practice, teaching and research. She has made major contributions to research in long-term care, and rural and First Nations communities, using participatory, community development approaches to empower and support community members and front line workers.Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

How do we make mission statements real ? Pat Morden says that leadership is critical to ensuring that people have autonomy and a sense of purpose to understand the mission.Pat Morden, the 'upcycled' CEO of Shalom Village, is committed to enriching the experiences of those who need to live closer to care and want to live life on their own terms. Pat has worked to achieve this alongside others in a variety of settings, including as a front line nurse, university faculty member, CEO, executive coach, a member of numerous boards, and the captain of a world championship Canadian dragon boat team. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

What role do End of Life Doulas play in long-term care, and how can they help residents, family members and long-term care staff during the dying experience? We spoke with End of Life Nurse Educator Olga Nikolajev about the role of an End of Life Doula in long-term care, and how they contribute to quality end-of-life care.Olga Nikolajev is an end of life nurse educator with over 25 years of professional experience as a registered nurse in various healthcare settings, including hospice palliative care. She facilitates online courses through Centennial College, as well as the End of Life Doula course through Douglas College. She's also the founder and director of the Death Doula Ontario Network. Olga has been involved in national, provincial, and local community efforts to shift the way we view and approach our dying experience, death and grief, including how we care for each other at the end of life and beyond. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Speech language pathologists have a unique and important role in a palliative approach to care, especially when it comes to managing risk and maintaining quality of life. Caitlin Buchell is a Speech Language Pathologist working in  Manitoba and Northwestern Ontario. She works with individuals with neurological disorders at the end of life to maximize their quality of life and ensure that they're able to communicate. Caitlin also works in palliative care and is the consulting speech language pathologist with the Manitoba Medical Assistance in Dying team. Speech-Language & Audiology Canada (SAC) is a member-driven organization that supports and promotes the professions of more than 6,500 members and associates including over 800 audiologists. Their resource toolkit is designed to inform health-care professionals, patients/clients and their loved ones about common communication and swallowing issues at the end of life. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Bahar Karimi believes that compassion is the foundation to a palliative approach to care, and that it starts with ensuring that team members feel valued, safe and cared for.  She believes that we need a culture change in long-term care, one that identifies residents' multi-dimensional needs and gives team members the knowledge and tools to provide the best possibly care and quality of life.Bahar Karimi is the Executive Director of Long-Term Care Services and the Chair of Research at Thrive Group, a nonprofit organization that supports long-term care supportive housing and assistive living organizations in Ontario. Baha has a master's degree in nursing as well as a master's degree in Health administration, and is a certified health executive with the Canadian College of Health Leaders. Her passion is advocacy for health system transformation, compassionate leadership, and for mobilizing teams to provide exemplary quality of care and services Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

When you think of paramedics, do you think of 911 and emergency services? A community paramedics program in Peterborough is working to provide palliative and social services to seniors at home, with a goal to help them live well at home  for as long as they can.  Paramedics provide medical, emotional and mental health supports, and can identify individuals who may be at risk. They are also an advocate for patients and caregivers, and develop strong relationships within the community.We spoke with Craig Jones, the Deputy Chief of Community Projects with the Peterborough County and City Paramedics. He brings 30 years of experience to the role and has a passion for supporting individuals in staying well at home.Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

A new diversity toolkit is providing resources for long-term care organizations to help raise awareness of issues of equity, diversity and inclusion. The Embracing Diversity: A Toolkit for Supporting Inclusion in Long-Term Care Homes is an interactive resource with print and online components that gives long-term care homes practical steps to nurture diverse and welcoming communities.We spoke with Michelle Fleming and Ashley Flanagan about the toolkit and the importance of understanding issues of equity, diversity and inclusion in long-term care. Michelle Fleming is a senior knowledge broker at the Ontario Centres for Learning Research and Innovation in Long-Term Care.  Dr. Ashley Flanagan is a research fellow in Diversity in Aging at the National Institute on Aging.For more information about the toolkit, contact Michelle at: MFleming@bruyere.orgLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

"That's where the communication bit really is important. There's still medicine along the way, there's still chronic disease management. but it's the soft skills and the relationships and how you can leverage that to really make that stay for the long-term care resident and their family as peaceful, as comfortable and as high quality for them as possible." Dr. Henry Sue is an associate professor in the Department of Family Medicine at McMaster University. He has a clinical interest in working with older adults in primary care, and his scholarship is focused on long-term care.  He has also been an active attending physician in a Hamilton Long Term Care home since 2010. Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Courtney Hicks is a PhD student at the University of Waterloo in the School of Public Health Sciences, Aging Health and Wellbeing program. Her research focuses on a palliative approa h to care for persons living with dementia in long-term care settings. For two years, she worked as a Meaningful Connections Coordinator alongside a recreation and leisure team in a long-term care home in southern Ontario. During our conversation, she spoke about her personal and professional experiences with long-term care and palliative care, and the importance of building competencies in a palliative approach to care for all members of the team.

Essential life lessons from family caregivers: On autonomy, commitment, and diversityIn this final episode, co-hosts Katie and Sibtain consider how the project intersects with their personal and professional lives. During this conversation, they discuss three important take-home messages from those who participated in this podcast series. These messages connect to the themes of autonomy, commitment, and diversity."I want to take these stories and experiences that these caregivers have so graciously given us as an indicator of where our healthcare system is today but also where it needs to go." - SibtainLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Everyone has their own perspectiveIn this episode, you'll meet Suzanne, a retired teacher who – along with several siblings – provides care to her mother. As co-hosts Katie and Sibtain ask questions about the experience of sharing the caregiving responsibilities within a large family, Suzanne reflects openly on how everyone – including her mother – has their own perspective! "We are very lucky in that she listens to everyone but says, ‘nope; this is what I want'." – SuzanneLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Some friends become familyIn this episode, Rina shares wisdom from decades of experience supporting a close friend whose physical and cognitive function is changing. She keeps things grounded as she narrates the specific and creative ways she contributes to her friend's quality of life. When it comes down to it, Rina's story is about treating others as we'd like to be treated, and about prioritizing the seemingly small yet very important things that mean so much to quality of life.“I always think, what would I like?” – RinaLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Dr. Sandy Shamon is a physician and medical director working in long-term care, and a palliative care consultant at Sinai Health in Toronto, Ontario, Dr. Shamon is interested in improving quality of care in long-term care, through research and her advocacy role with the Ontario long-term care clinicians organization, where she works to champion system reform and education to enhance the quality of care in these settings. 

Caregiving is just what I doIn this episode, Sheila, a Nehiyaw (Cree) woman from Treaty 6 Territory, explains how she supports an adult son living with an acquired brain injury and a genetic syndrome. While co-hosts Katie and Sibtain prepare for this exchange, Sheila explains the meaning of their tobacco offering. As Sheila describes how her son navigates his health conditions and how she supports him, you'll find yourself reflecting the terms “caregiver” and “disability” in a new way."I didn't think twice about if it was going to be hard or easy or how much time it's going to take out of my life; I just knew I had to do it." – SheilaLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Jen Logan has been nursing for 25 years and has worked in palliative care in many capacities, including community nursing care coordination for a palliative care team. In her current role as a palliative pain and symptom management consultant, she is also an advanced care planning regional champion, which allows her to build the capacity of frontline care providers in advanced care planning and the provision of person-centered care for patients and families.Kim Rogers has been a nurse for almost 20 years, and has been a palliative pain and symptom management consultant for nearly seven years. Prior to this role, she was a nurse on a hematology floor. She's a graduate of Brock university with a Bachelor of Arts and also a graduate of Mohawk College in Nursing. As a facilitator of palliative care education, Kim loves passing on her knowledge to other healthcare providers. 

Gita Rafiee is a Clinical Nurse Specialist at Fraser Health in British Columbia, and a clinical Instructor at Vancouver community college.  She has extensive experience in several clinical settings, including Acute care, Assisted Living and Long-Term Care, and she works with students, patients, families, and interdisciplinary teams to promote patient health and well-being and quality of life.Nick Petropolis is a family doctor and the Physician Lead for Fraser Health's Palliative Approach to Care in Long-Term Care in British Columbia. He is passionate about doing Family Medicine “the right way,” by listening to his patient's ideas, fears and especially enjoys helping the elderly navigate the oftentimes confusing healthcare world we live in, and ensuring that their final years are as comfortable as possible. 

When the going gets tough, the tough get goingIn this episode, Darrel looks back on pivotal moments in his caregiving journey, including the moment he first realized his mother's cognitive health was changing, and the moment he realized how hard it was for his father to be his mother's sole caregiver. He shares what inspired him to step into a role as their primary family caregiver, and how this shaped his own experience as a parent. "Look for those moments of connection and really enjoy them." – DarrelLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Sandra Chow is a recently retired teacher and program consultant who worked for 30 years with the Waterloo and Hamilton boards of education. She has continued her learning in retirement with courses from the university of Toronto, continuing studies in mindfulness informed end of life care. She also recently became involved with the community of practice for strengthening a palliative approach in long term care.In this podcast, Sandra talks about her experiences caring for her mother in long-term care, and the importance of a palliative approach to care.

Dr. Amit Arya is a palliative care physician who works in hospital, home care,  and long-term care facilities, and is also a professor at the University of Toronto and McMaster University.  He's currently the palliative care lead at Kensington Health in Toronto, and also works at the Freeman Centre for Palliative Care at North York General Hospital in Toronto, Ontario.  He holds multiple leadership roles at the national, provincial and local level, and was awarded the 2020 Award of Excellence in Social Responsibility  from the Department of Family and Community Medicine, University of Toronto.In 2021, Dr. Arya co-founded Doctors for Justice in Long-Term Care, a coalition of over a thousand physicians and researchers advocating for an overhaul of the long-term care system in Ontario. He has been featured in the media speaking about long-term care on well-known programs such as CBC's The National, CTV's The Social, and TVO's The Agenda. 

Jackie McDonald recently retired after being a Personal Support Worker for the past 27 years. She has worked in both community and long-term care settings in Thunder Bay, and she was the PSW lead for the Quality Palliative Care in Long-Term Care project at Lakehead University from 2004 to 2009. Through this project, Jackie has help to develop many initiatives pertaining to bettering the quality of life for residents, families, and staff. 

Dr. Patricia Strachan is an associate professor in the School of Nursing at McMaster University. Her clinical background is in emergency intensive care and adult medical surgical nursing.  Dr. Strachan's research interests have evolved as she works to understand how we talk with patients living with advanced heart failure about their illness and its implications. Her focus in education and research is on optimizing nurses' capacities for meaningful conversations in challenging contexts, and particularly with patients living with advanced illness. 

A self-styled approach to disability supportIn this episode, you'll meet sisters Krysta and Kayley. In addition to being a family member, Krysta also works as Kayley's full-time caregiver. Using an open and humorous approach, the two share what it's been like to self-style their caregiving relationship. In doing so, they illustrate how important it is for care to run both ways. This leads co-hosts Sibtain and Katie to contemplate different funding models for caregiving in Canada.“I don't have a clock to switch on and off; I have times when I'm needed.” – KrystaLearn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Laura Bulmer is a Registered Nurse with a Masters in Education who has extensive palliative care experience. As full- time faculty in a Toronto college, Laura has taught in the nursing and Personal Support Worker programs for over 2 decades.  She is the recipient of an RNAO Best Practice Award for her work in palliative care including the My Story and Can We Talk project.Laura's passions include advocating for Personal Support Workers and enhancing palliative care education.

Since 1972, researcher Mary Lou Kelley  has been engaged in gerontology and palliative care practice, teaching and research. She has made major contributions to research in long-term care, and rural and First Nations communities, using participatory, community development approaches to empower and support community members and front line workers. Her research has led to changes that have improved end of life care for people, their families and communities. Mary Lou was a professor at Lakehead University for 35 years, and is now a team member working on the Strengthening a Palliative Approach in Long-Term care project, as well as a volunteer for Compassionate Ottawa.

Keeping family close while living at a distanceMarlene shares her experience of keeping family close while living at distance. She explains how long-distance caregivers stay actively involved in coordinating care, describes the feelings that arise from not being physically present all the time, and offers listeners ideas for bridging the distance. “We have a standing date - every Thursday we visit on Zoom. And even though dad can't comprehend how we're actually doing this and it just amazes him every single time, he loves it."Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Join co-hosts Katie Ottley and Sibtain Ali for a series of conversations with Canadian family caregivers. As guests Marlene, Kayley, Krysta, Sheila, Suzanne, Rina, and Darrel share powerful life lessons on caring from near and far, Katie and Sibtain realise that no two families are alike and that there is much to be learned from hearing each other's stories.Katherine (Katie) Ottley is a doctoral student in Culture, Health, and Human Development in Saskatoon, Saskatchewan. Informed by her personal experiences of disability and caregiving, she is interested in highlighting others' unique experiences. In the podcast series Cup of Care, Katie aims to showcase that diversity is everywhere you look.Sibtain Ali is training to be a physician at the University of Saskatchewan in Saskatoon. Extending from his interest in patient-centred care, he is curious about how family caregivers' experience their roles. Through the unique stories of caregiving featured in Cup of Care, Sibtain hopes families will be encouraged by each others' experiences, and healthcare team members will see their work from a new vantage.  Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/