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

Palliative Care is often misunderstood.

10 Myths About Palliative Care infographic dispels common misconceptions about palliative care.

This resource is available in English and 13 other languages, including:
-French

-Arabic

-Brazilian Portuguese

-Catalan

-Chinese

-Cree

-Hebrew

-Inuinnaqtun

-Japanese

-Portuguese

-Spanish

-Tagalog

-Kinyarwanda


Download and share the infographic in your preferred language via:
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Resources/Books_+Links_+and+More/

Source: Canadian Virtual Hospice

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

“We believe that it takes a society to create better treatments, better care, and better support for people living in Canada. Part of making further advancements is offering recommendations to federal and provincial governments that can make supports for people with cancer more accessible, like palliative care.” Source: CCS

The Canadian Cancer Society’s (CCS) report analyzing palliative care across Canada will direct advocacy and support initiatives in the coming years. This report highlights 4 key findings about palliative care:

1. Canada still lacks the capacity to consistently deliver palliative care in communities, particularly in hospice.

2. There are significant social barriers to talking about death and dying, and confusion about the benefits of palliative care.

3. All provinces and territories noted that more could be done to improve cultural safety in palliative care, including grief and bereavement supports.

4. Access to palliative care would be enhanced with additional training of healthcare professionals in more healthcare settings.

To ensure that palliative care reaches those who require it, there needs to be a shift in the awareness and understanding of services for everyone, including providers, caregivers, and patients. There also needs to be an increased understanding of the landscape of palliative care services across Canada. The palliative care needs of a population cannot be met by palliative care specialists alone.

Source: 4 key findings about palliative care. CCS

To read more, visit: https://cancer.ca/en/about-us/stories/2024/4-key-findings-about-palliative-care 

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.

"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. 

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 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

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 World Hospice and Palliative Care Day (#WHPCDay23)

Today is World Hospice and Palliative Care Day (#WHPCDay23).

World Hospice and Palliative Care Day is an annual unified day of action to celebrate and support hospice and palliative care around the world.

WHPCD has been marked every year on Saturday October 14th to advocate for better hospice and palliative care services around the world. The WHPCD theme for 2023 is Compassionate Communities.

Together for Palliative Care Compassionate Communities care for people, assist people to live in the place they call home, connect people to services, and raise #awareness about end-of-life issues.

We believe that palliative care working alongside compassionate communities multiplies the ability to respond to the needs of the most #vulnerable in our communities.

For more information, please visit The Worldwide Hospice Palliative Care Alliance (WHPCA)

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

It is National Hospice Palliative Care Week in Canada

The first full week of May marks National Hospice Palliative Care Week in Canada. Palliative care is person-centered care. That means, in part, that wherever there is a person with a life-limiting illness, palliative care can be provided. If someone is facing significant health-related suffering because of a life-limiting illness, palliative care can help regardless of the setting of care, regardless of a person’s illness or prognosis, regardless of their postal code. Palliative care is an approach that aims to alleviate the suffering of people facing a life-limiting illness. It can be provided in any setting – from hospice, to long-term care, to hospital, to home.

While access to palliative care has improved over recent years, the latest data shows that only 58% of Canadians who died in 2021-2022 received palliative care, usually in a hospital. The “Palliative Care Everywhere” campaign highlights that there are no limits on where a palliative approach to care can be provided and reminds us that wherever people face life-limiting illnesses, end-of-life, and grief, there must also be a place for palliative care.

"This week, we celebrate the indispensable and compassionate care provided by health care workers, volunteers, unpaid caregivers and many others across Canada. The impact of palliative care on a person’s quality of life and on their family is profoundly meaningful, and every person with a life-limiting illness deserves to receive this level of care," said Laurel Gillespie, CEO of CHPCA. “Sadly, less than 60% of Canadians who died last year received care from the discipline that specializes, in part, in caring for the dying. It is time for everyone in Canada to come together to build a future where ‘Palliative Care Everywhere’ is true in every postal code.” Source: CHPCA

Medical Education: Honouring life, love, loss and legacy at McMaster University

Incredibly honoured to facilitate the Annual Dr. Barbara Tatham Memorial Lecture & thank her sisters Erica, Deanna & Laura for joining us to demystify grief, honour loss & explore healing while caring for others and ourselves. Honouring Dr. Tatham's life, legacy and brilliant contributions to Medical Education at McMaster University.

Honouring person and family-centred care is ESSENTIAL from time of diagnosis, throughout treatment, into remission, at end-of-life, and into bereavement.

A cancer diagnosis is traumatizing. Finding community, support and connection is essential in the face of trauma. Stories of others moving through trauma are always important in post-traumatic growth (Tedeschi & Calhoun). Strength is often correlated, almost paradoxically, following an increased sense of being vulnerable - of being human.

Today, please take a moment to connect with your breath, honour your strengths and make space for who and what matters most in your life. ❤️

Today is the Annual #TerryFoxRun. To support Dr. Tatham's life, legacy and indomitable spirit in the face of cancer, please donate to #TeamBarb https://run.terryfox.ca/team/teambarb

C. Elizabeth Dougherty Consulting Spring Newsletter

Loss in the Time of COVID: Exploring the Impact of Grief

Honoured to deliver Loss in the Time of COVID: Exploring the Impact of Grief as the Keynote address at Trillium Health Partners in support of National Hospice Palliative Care Week in Canada.

My sincere gratitude to everyone who joined our discussion via Zoom, for sharing time, reflections and energy - and for acknowledging the impact of trauma, loss and grief for healthcare providers as we continue to serve so many facing trauma, loss and grief during the pandemic.

Best Oral Paper Award at #HPCO2022!

Incredibly honoured as the Clinical Lead to receive the Best Oral Paper Award at #HPCO2022 Hospice Palliative Care Ontario Annual Provincial Conference with our incredible interprofessional team: Ann Vander Berg, Allyson Oliphant, and champion for our project - Dr. Andrea Folic for "Care Beyond Walls: Innovation, Implementation and Evaluation of a Medical Assistance in Dying-Specific Bereavement Support Group for Caregivers"

Exploring the Role of Social Work in Palliative Care

So grateful to speak with my friends and colleagues Drs. Hsien Seow and Sammy Winemaker on their podcast The Waiting Room Revolution.

We explored the role of Social Work in Palliative Care, the value of proactive and compassionate person and family-centred support following diagnosis of any serious illness, exploring loss and grief through to end-of-life and bereavement, creating space for essential conversations, and the healing power of silence.

Follow their podcast for essential tips and tools to navigate the healthcare system following diagnosis of a serious illness. To listen to our conversation, click here

Supporting children and youth who have a family member with an advanced serious illness

Supporting children and youth who have a family member with an advanced serious illness via NACG The Dougy Center & KinderCare

At some point, we all encounter a child or teen who is living with the anxiety of a family member’s life-limiting illness. You can have the opportunity to be a support person, providing empathy as they face the serious illness, grief, loss and perhaps death, of a family member.

Some considerations include: Listen, Acknowledge, Understand, Provide Consistency, Help, Safety, Provide Resources

Source: https://childrengrieve.org/12-resource/309-resources-2

C. Elizabeth Dougherty Consulting - Winter 2022 Newsletter

I am honoured to share my winter 2022 newsletter with free resources for individuals and families of all ages facing a complex illness, following diagnosis through to bereavement.

I am also grateful to also share teaching experiences including: undergraduate and graduate Social Work Education; undergraduate interdisciplinary education; and Interprofessional Education for healthcare providers and volunteers exploring informed conversations, honouring person and family-centred care, demystifying grief, and advocating for high-quality palliative care.