Demystifying Palliative Care: Exploring a Wrap-Around Approach to Quality of Life

Thank you to Wellspring Niagara for the invitation to present “Demystifying Palliative Care: Exploring a Wrap-Around Approach to Quality of Life”.

It is important to acknowledge the barriers exist - to education, services, funding & resources.

Did you know that Palliative Care is:

• Appropriate for any person & or family living with, or at risk of developing, a complex illness due to any diagnosis, with any prognosis, regardless of age, & at any time they have unmet expectations & or needs, and are prepared to accept care

• May complement & enhance disease-modifying therapy, OR it may become the total focus of care

• Most effectively delivered by an interprofessional team who are both knowledgeable & skilled in all aspects of the caring process related to their discipline

• Treats all active issues & prevents new issues from occurring

• Addresses physical, psychological, social, spiritual and practical issues, & their associated expectations, needs, hopes & fears

• Prepares for & addresses self-determined life closure & the dying process;

• Assists in coping with loss & grief throughout the illness & into bereavement

Yet SO many barriers exist, including:

• Few Canadians (15%) have EARLY access to Palliative Care

• Palliative Care provided during admission to hospital was unplanned or through an emergency department 80% of the time

• 62% of Canadians who received Palliative Care did so in an acute care hospital in their LAST month of life

• Palliative Care is a patchwork of uncoordinated services

• Palliative & end-of-life care remain underfunded - receiving only ~1% of the overall investment in cancer research

• Mandatory education should be required for ALL healthcare providers due to the team-based nature of high-quality palliative care, including culturally safe palliative care, grief & bereavement supports

• Structurally vulnerable & marginalized communities including: Unhoused people, Indigenous communities, non-English speaking patients, young patients & 2SLGBTQ+ individuals & families face additional barriers to care resulting in inequitable access.

It is essential that we address barriers and stigma surrounding Palliative Care as this impacts access to care - for anyone facing a complex illness (curative or life-limiting).

World Hospice and Palliative Care Day is Saturday October 12th.

This is an annual unified day of action to celebrate and support hospice and palliative care around the world and the theme this year is: Ten Years Since the Resolution: How are we doing? The year 2024 marks 10 years since the World Health Assembly (WHO’s Governing Body) passed the only stand-alone resolution on palliative care, calling for all countries to “strengthen palliative care as a component of comprehensive care throughout the life course.” 

Palliative care is recognised as a fundamental component of health care systems, including Universal Health Coverage and primary health care. Yet, sadly, approximately 86% of people around the world who need palliative care cannot access it. Some 18 million people die every year with pain and suffering, due to lack of access. Much of the problem of lack of care is caused by a lack of awareness of how palliative care should be given, and why it is important. 

On this World Hospice and Palliative Care Day, we call upon governments, policymakers and providers to prioritise and implement national strategies for bereaved populations based on a public health approach. It is estimated that for each death, up to 9 people are directly affected by the loss. Given that about 120 million people died over the past two years (including over 6 million from COVID), Then over a billion people are experiencing bereavement by one or more deaths of people significant to them in the past two years.

If you would like any further information, please visit the World Hospice and Palliative Care Day website for more information about events at http://www.thewhpca.org/world-hospice-and-palliative-care-day. 

Source: The THE WORLDWIDE HOSPICE PALLIATIVE CARE ALLIANCE

National Children’s Hospice Palliative Care Day is Thursday October 10th.

"National Children’s Hospice Palliative Care Day raises awareness about the importance of children’s hospice palliative care and how it improves the quality of living and dying for children with serious illnesses and their families. The campaign is co-hosted by CHPCA and the Canadian Network of Palliative Care for Children (CNPCC), every year on the second Thursday of October." Source: Canadian Hospice Palliative Care Association CHPCA

"Every child and teen deserves a full, happy life filled with love. How can we make sure that happens for children with a serious illness? That’s where children’s hospice palliative care teams come in. The focus of Pediatric Palliative Care is on improving the quality of life of the child and their family. That means support for:

• Symptom management

• Emotional and spiritual needs

• Building connections with other children and families on similar journeys

• Making memories and finding joy as a family

• And so much more!

Pediatric Palliative Care teams are there to lighten the load, to walk alongside families on this journey, and to give them the support and resources they need so they can focus on the little joys and precious moments together.

This day is a call to action. It’s time to recognize that children’s hospice palliative care is not just a specialty. It is a shared responsibility across healthcare and communities to help children and families Make Every Day Count.” Source: CHPCA

To learn more, visit National Children’s Hospice Palliative Care Day. Canadian Hospice Palliative Care Association (CHPCA) 

National Children’s Hospice Palliative Care Day is Thursday October 10th.

"The main goal of palliative care is quality of life, including relief from symptoms of physical and emotional illness and stress. Palliative care is appropriate for any child that has received a serious diagnosis or for whom the prognoses has become serious. The PPC team helps to coordinate your child’s care and can act as a liaison between you and the care team (and, really, everyone in your life who is involved with this illness journey)." Source: Courageous Parents Network (CPN)

"Pediatric palliative care providers can help with a whole host of challenges that may arise during a child’s cancer treatment. It isn’t just symptom management. This can include navigating difficult conversations and serving as an interpreter for the child." Source: Courageous Parents Network (CPN)

"What if" conversations are hard. However, having them with your clinicians can help you find the anticipatory guidance you crave and help you better define your goals of care for your child. Understand more about goals of care by visiting the CPN website". Source: Courageous Parents Network (CPN)

Watch Dr. Toluwalase Ajayi, a Pediatric Palliative Care physician explain the "PERSON Model" to explore what parents/caregivers are wondering for their child: 

• Perception

• Explore

• Relate

• Sources of Worry 

• Outlining Next Steps

• Notify 

via Courageous Parents Network (CPN) https://courageousparentsnetwork.org/videos/a-palliative-care-md-on-the-person-model-for-assessing-peoples-goals-of-care

To learn more about Palliative Care and how can help, visit CPN at https://courageousparentsnetwork.org/topics/how-palliative-care-helps:

Visit the incredible FREE resource - The Courageous Parents Network (CPN) mobile APP - a quick and easy way for families caring for very sick children, and the providers who support them, to find, save, carry and share Courageous Parents Network (CPN) content (videos, podcasts, guides and more resources) and register for free CPN events. 

Demystifying Grief and Honouring Loss: Exploring Healing While Caring For Others And Ourselves

I am honoured to once again deliver the UGME lecture “Demystifying Grief and Honouring Loss: Exploring Healing While Caring For Others And Ourselves” to the Michael G. DeGroote School of Medicine at McMaster University.

Grief is simply one word that cannot begin to describe a universal, yet uniquely complex and deeply personal, series of life-changing events and losses while still finding ways forward.

Acute care hospitals focus on short-term episodic care & interventions and treatments aimed at cure, creating an environment where death is seen as a failure, or where death is denied. What does this mean when dying and death are inevitable?

It is so essential in whole person and *family-centred care, that we explore impact on the person and family, not just treat part of the body, or acknowledge a fraction of the medical event, or illness. This is true for all we serve, and this is also true for healthcare providers stepping forward to deliver care who are deserving of care and support for themselves.

 What does it mean to explore and honour grief for anyone facing trauma and loss stemming from acute medical events, complex illness, dying, death, bereavement - for any person and family, AND the healthcare providers caring for them?

 A reminder, while largely stigmatized and misunderstood, in the words of Dr. Kenneth Doka,

“Grief is a reaction to loss. We often confuse it as a reaction to death. It’s really just a very natural reaction to loss. When we lose any significant form of attachment, grief is the process of adjusting”

Grief is a process, a uniquely personal ongoing process.

Grief can fracture one’s entire world, temporarily, or permanently.

Following an acute medical event, or a diagnosis, grief can fracture identities, hopes, routines, connections, sense of control and safety. Grief, largely invisible to others, is incredibly isolating, leaving the individual to navigate a fractured world, often alone – even when surrounded by others.

Modern medicine focuses on cure and fixing. In grief, healing focuses on care and process.

Learn to sit with (OR move with) grief as this demonstrates a sense of presence that is open, engaged and compassionate with the process of metabolizing grief, and in doing so, honours the losses, and the connections.

*family is always best defined by the individual we serve, as family, and loss of connections to family, are others sources of trauma and loss.

Proud, Prepared, and Protected

“Proud, Prepared, and Protected is a collection of online FREE resources to assist people who identify as 2SLGBTQ+ to access and receive inclusive, respectful care. These resources were developed by people who identify as Two-Spirit and LGBTQ+ and more than 40 organizations and Canadian Virtual Hospice to fill a national gap. This information is also helpful for allies, people working in healthcare and education and communities.” Source: Canadian Virtual Hospice

To access free resources, visit: Proud, Prepared, and Protected

Hope for the Best Plan for the Rest The 7 Keys - A Lunch and Learn Event

I am thrilled to be in conversation with fabulous colleagues from McMaster University, Dr. Hsien Seow & Sammy Winemaker of The Waiting Room Revolution.

Dr.'s Seow and Winemaker are extraordinary advocates and brilliant communicators focused on supporting individuals, families and communities navigating serious illnesses and facilitating empowered experiences within the healthcare system.

"Hsien and Sammy have spent their careers helping those who are facing serious illness. For years, they often heard patients and families say they felt unprepared and overwhelmed. Despite years of education, research, and advocacy, they continued to hear patients and families say 'Why didn’t anyone tell me that sooner…'

They started the Waiting Room Revolution movement because they wanted to improve the patient and family illness experience. They want to build a community to share deeply human stories about caring for others. Through interviews with experts, clinicians, patients and caregivers, they are harnessing the advice of those with lived experience to better prepare those who are just starting their caring journey." Source: The Waiting Room Revolution

Join us for Hope for the Best Plan for the Rest The 7 Keys - A Lunch and Learn Event with the Canadian Alliance for Children’s Grief via ZOOM

Guest Speakers:
Drs. Winemaker and Seow are authors of the new book ‘Hope for the Best, Plan for the Rest’ and co-hosts of the podcast ‘The Waiting Room Revolution’. C. Elizabeth Dougherty is a Psychosocial Clinician and Educator specializing in supporting families of all ages facing serious illness, uncertainty and grief.

Together, they will discuss how the 7 keys can be used in the context of children's grief right from the time of diagnosis, so families can be more proactive and less-crisis driven and have a better illness journey.
Please register via this link.

Source: The Waiting Room Revolution

The essential guide for every patient and family diagnosed with a life-changing illness

"The essential guide for every patient and family.

When you are diagnosed with a life-changing illness, it can be overwhelming. While your diagnosis cannot be changed, the way you experience your illness can.

In Hope for the Best, Plan for the Rest, we draw on our decades spent researching and caring for thousands of seriously ill patients to reveal the seven keys for a better illness experience. With real-life stories, tips, and exercises to improve your journey right from diagnosis, we want to empower you with practical tools to navigate the healthcare system with knowledge, confidence, and clarity.

You can find hope in the face of uncertainty. You can live well, be fully informed, and be activated - and feel more like a person and less like a patient. But most of all, you can be hopeful and prepared at every step along the way."

Source: Waiting Room Revolution

What to do when facing a serious illness

What to do when facing a serious illness: 3 sets of questions to ask your health care team

Receiving a diagnosis of a serious illness can be overwhelming. Often people don’t know what the journey will look like. However, there are things you can do to help you communicate with your healthcare team. For example, you and those closest to you can ask key questions to make sure you understand your illness.

1. What does it mean to have this serious illness?
2. What can I expect now and in the future?
3. How can I prepare for what might come next?

For more information:

On Serious Illness and Palliative Care in Canada: canada.ca/palliative-care

Waiting Room Revolution for information and resources to help patients and families who are facing serious illness (English only): waitingroomrevolution.com

Source: @waitingroomrev

The largest ever survey on grief in Canada has been released...

The largest ever survey on grief in Canada has been completed and results have been published, though sadly, not surprising...

"Results from the largest grief survey ever conducted in Canada show that the very thing that many people want most when they are grieving - to be asked about their loss - is not how society is likely to respond.

The Canadian Grief Alliance (CGA), Canadian Virtual Hospice has released the findings of its landmark public survey on grief. With nearly 4,000 respondents, the survey is the largest ever on grief in Canada and will inform a National Action Plan for Grief which the CGA will present to the federal government in 2025.

Key findings include:
- 53% of respondents said their grief went largely unrecognized by others
- 50% of respondents felt inadequately supported in their grief
- 83% of respondents identified being asked about their loss as being helpful
- 54% of respondents wanted more access to one-on-one grief counselling
- 52% of respondents thought educating the public on how to better support each other would be helpful

Survey results point to the need to:
- Enhance understanding of loss, grief, and how to provide support among the public and professionals
- Expand access to a spectrum of grief services for both death- and non-death losses.
-Explore in greater detail the grief experiences and needs of people who are: from racialized and marginalized communities; Non-binary; Under age 40".

Source: CGA and Canadian Virtual Hospice

To read more, please visit: CGA Executive Summary

Holding Exquisite Presence When Supporting Children and Their Families Who are Grieving

I was incredibly honoured to join my compassionate friend and dear colleague, Rami Shami, in a creative space, talking about the need for grief to come out of the shadows.

“How we support children and youth in their grief can have a lasting impact on their mental, emotional, even physical health. Joining us on this podcast is an individual who draws on her knowledge and experiences as an educator, a clinician in private practice, and a mother, in sharing how to hold what she calls, 'exquisite presence,' when supporting children and youth who are grieving. Her approach, garnered through decades of in the field work within numerous settings, highlights practical and informative insights into the disenfranchisement of grief amongst children, and how promoting safe spaces can help children process their experiences of loss. Join us for an exceptional informative and educational podcast!”

Source: The Lighthouse Beacon Podcast

Navigating the Impact of Complex Illness as a Caregiver

I was honoured to present "Navigating the Impact of Complex Illness as a Caregiver" during National Hospice Palliative Care Week to VON Canada Grey Bruce, Supportive Care Program and an incredible group of Caregivers and Care Providers.

Following the diagnosis of a complex illness, it is common for family to feel a range of emotions including sadness, anxiety, anger and hopelessness. Facing these challenges can sometimes bring people together, while often, it can feel like it pulls people apart. Caregiving requires balancing multiple roles and stressors, while also navigating grief and uncertainty.

Caregiving can feel isolating and often means losses of identity, ritual and connections. Navigating the changes and uncertainty as a caregiver is part of the added demands of an illness experience.

Harris (2016) states, "Grief is a response to disorganization that occurs after an assumption about the world is challenged by a significant loss. Conflict occurs between assumptions & situations that challenge those assumptions. Grieving is the process of how the new assumptive world is (re)formed over time"

Yet, amid all the challenges and changes, grief is carried and often unaddressed. Most assume it happens only once someone is dying or has died. So much non-death loss and grief occurs throughout our lifetime, especially following the diagnosis of a complex illness, throughout the illness experience, at time of death, and for the balance of our lives as we (re)form the world around us.

Caring in Canada (May 2024) via Canadian Centre for Caregiving Excellence provides results from the National Caregiving Survey of 3,000 Caregivers and Care Providers highlighting:
- Caregiving takes a toll on a caregiver’s wellbeing
- Caregivers are working ‘extra-shifts’
- Caregivers 65+ also need care
- Caregiving has a financial toll
- Care provider shortage is linked to poor working conditions
- Diverse communities face barriers and gaps in support

Integrated and accessible support is needed for caregivers throughout the illness experience.

*Family is best defined by the person receiving care. It can include family of origin, or chosen family.

The first week of May is National Hospice Palliative Care Week in Canada

National Hospice Palliative Care Week is an opportunity to highlight quality Palliative Care across the country. This week also serves as an opportunity to call for better education and access to Palliative Care for ALL across Canada.

Palliative care is active, collaborative, compassionate and integrated person and family-centred care, for anyone, of any age, facing ANY stage of complex illness.

“Canadians should have access to affordable, culturally safe, high-quality palliative care regardless of where they live and in what setting they choose to receive care. Promoting and supporting the need for improved development and delivery of early, active, competent and compassionate palliative care is essential. This includes expert pain management; skilled psychosocial, emotional and spiritual support; and comfortable living conditions with the appropriate level of care – whether at home, in a hospital, at hospice residences or in any other settings of choice.” Source CCS

To access 10 Myths about Palliative Care, visit Canadian Virtual Hospice

For more information about Palliative Care in Canada, please visit:
The Canadian Hospice Palliative Care Association
Canadian Virtual Hospice
The Canadian Cancer Society

April 16th is Advance Care Planning Day in Canada

Planning for future healthcare needs is important.

• Who would you trust to make healthcare decisions?

• Do you know what would happen if you couldn’t communicate for yourself?

• Who would you trust to make those healthcare decisions on your behalf? 

Think about: 

• Who you would trust with making important decisions for you. 

• What matters most in your life and how that might help guide healthcare decisions you would want.  

Consider: 

• Do you know what would happen if you couldn’t decide for yourself?

• Who do you trust to make healthcare decisions that respect your wishes?

• Would that person (or people) be able to make important decisions about your health in an emergency?

• Have you spoken to anyone about what matters most in your life?

• What gives you strength in difficult times? 

• Are spiritual, cultural or religious beliefs, practices, or ceremonies are important to you?

The best time to think about this is NOW (in advance of a medical crisis), while you can make decisions and communicate for yourself. You have the power to choose who that person is. They can be a family member, a friend, or anyone in your life that you trust to make the kinds of healthcare decisions you would want. 

Ask yourself: If not you, who? 

Source: Advance Care Planning Canada

It is never too early, but it can be too late!

To learn more about Advance Care Planning in 5 Steps, visit Advance Care Planning Canada to access helpful free toolkits and guides to help you along the way. 

FREE Death Café at the David Braley Health Sciences Centre, McMaster University

In celebration of Advance Care Planning Day 2024, I am honoured to co-facilitate a FREE Death Café at the David Braley Health Sciences Centre, together with Dr. Alan Taniguchi, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

Registration is required for this FREE Death Café on Wednesday March 27th (6-8pm) via Eventbrite

Death Café is an international movement where people, often strangers, gather to eat, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group. Please note that Death Café is NOT a grief support group, nor is this a grief counselling session.

Death Café is a respectful, public event where people of all communities and belief systems are welcome to have respectful discussions about death.

Interesting conversation is guaranteed! For more information, please visit Death Café

Today is National Children’s Hospice Palliative Care Day in Canada

October 12th, 2023 marks National Children’s Hospice Palliative Care Day in Canada. The campaign aims to raise awareness about the importance of pediatric hospice palliative care and improve the quality of living and dying for infants, children and youth with life-threatening conditions and their families. National Children’s Hospice Palliative Care Day is held on the second Thursday of October annually.

In the delicate tapestry of a child’s life, every thread counts. National Children’s Hospice Palliative Care Day celebrates the art of “Weaving the Fabric of Care,” applauding the dedication, compassion, and advocacy of those caring for children with serious illnesses.

This day is a call to action, a chance to embrace the essential threads of care that comfort and support families navigating a child’s serious illness when they need it most. It’s about recognizing that children’s hospice palliative care is not just a specialty; it’s a shared responsibility across healthcare and communities.

We invite you to join this heartfelt movement. It’s a journey of awareness, empowerment, and care. Together, we can make a difference in the lives of youth and their loved ones through a holistic and family-centered approach to care.

Become an advocate – for each child, for every family. Discover the world of children’s hospice palliative care and equip yourself with the knowledge to identify those who would benefit most from its supportive embrace. You can be the voice that echoes through the corridors of healthcare, championing this approach to care, and the professionals of all stripes that provide it.

“Weaving the Fabric of Care” is not just a slogan; it’s a promise. A promise that anyone can integrate a palliative approach into every facet of their care. A promise that we can improve the quality of life of a seriously ill child and their family together through this approach, whether you are a nurse, allied health professional, social worker, or even a volunteer.

Let us unite our hearts, weave our stories, and together, create a quilt of care that enfolds every child in warmth, comfort, and dignity. Join us on this journey, as we weave the fabric of care, one thread at a time.

Source: The Canadian Hospice Palliative Care Association
For more information, please visit The Canadian Network Of Palliative Care For Children

Palliative Care In-Depth Online Workshop

As faculty at McMaster University and a certified LEAP™ facilitator, I am again honoured to join my colleagues from the Division of Palliative Care at McMaster University to facilitate the Palliative Care In-Depth Online Workshop combining the curriculum of Pallium Canada’s LEAP™ In-Depth with McMaster University 3 Days in Palliative Care.

This is a unique opportunity for healthcare professionals to continue learning about the palliative care approach and focus on different disease conditions and topics. The session schedule is designed to allow for national participation and clinical commitments.

This workshop has been developed for online delivery in partnership between Pallium and the Department of Family Medicine at McMaster University. Sessions are facilitated by McMaster University faculty who are LEAP™ certified facilitators and experienced palliative care clinicians and educators.

TOPICS COVERED INCLUDE:
• Recap of the palliative care approach
• Unique situations
• Transitions in long-term care
• Heart diseases and advanced liver
• In-depth communication
• Renal and neurological diseases

Please contact support@pallium.ca with any questions about the course, or to register.
Want to learn more about Pallium Canada or LEAP™? Visit pallium.ca

Demystifying Grief and Honouring Loss: Exploring Healing While Caring for Others and Ourselves

I am incredibly honoured to deliver Virtual Palliative Care Grand Rounds, “Demystifying Grief and Honouring Loss: Exploring Healing While Caring for Others and Ourselves” at University Hospitals, Case Western Reserve University School of Medicine.

In healthcare we move through an array of experiences, navigating acute emergencies, illness, death and a myriad of non-death losses, for ourselves, for all we love, and all we serve.

What about experiences that cannot be cured or fixed? As Dr. Kenneth Doka states, “Grief is a reaction to loss. We often confuse it as a reaction to death. It’s really just a very natural reaction to loss. When we lose any significant form of attachment, it’s the process of adjusting”.

There is no closure or “getting over” loss, nor are there finite timelines in grief.

We continue to grieve someone (or something) after loss and the cumulative effects and secondary losses that follow. Grieving the loss means learning to move forward, integrate, and metabolize the loss(es), while honouring the connection in meaningful and supportive ways.

In the face of trauma, loss and uncertainty, it can feel overwhelming to consider moving forward. Tedeschi & Calhoun highlight the importance (and benefit) of Post-Traumatic Growth, specifically:

• Traumatic events are not viewed as desirable

• Stories of others moving through trauma are always important in post-traumatic growth

• Strength is often correlated almost paradoxically, following an increased sense of being vulnerable

In Kitchen Table Wisdom, Dr. Rachel Naomi Remen writes, “The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet.”

There is healing power in connecting with the voices and stories of others. I am grateful to share a space to honour healing in healthcare, in the face of grief, loss, connection and community.

Teaching about the importance of empathy

To learn more about how Dr. Barbara Tatham used her own illness to teach others about the importance of empathy, please read "White Coat to Blue Gown".

"She laid herself bare for everyone to see just how hard it can be to be a patient, and in doing so, made all of us want to do better.... Barb’s honesty about her poor prognosis was painful to hear but she had clearly confronted her own humanity and mortality in a way that few of us ever will.” Source: e-Dialogue College of Physicians and Surgeons of Ontario

Undergraduate Medical Education: From White Coat to Blue Gown

I was incredibly honoured to once again facilitate this annual lecture in memory of Dr. Barbara Tatham at the Michael G. DeGroote School of Medicine at McMaster University.

Barbara was a medical student at McMaster University and went on to become an innovative Family and Emergency Room Physician and collaborative Medical Educator. After enduring a courageous battle with cancer, at the age of 32, Barbara died on October 16, 2019, a few short weeks after delivering her final extraordinary undergraduate medical education lecture, Barbara left us with her last lecture, a precious legacy, recorded at McMaster, selflessly demonstrating her indomitable spirit and compassion.

We have been fortunate to maintain contact with Barbara’s family since 2019. Their hope is that medical students while remembering Barbara’s empathy, will consider their own humanity as they go on to care for patients, families and themselves.