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.

"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. 

FREE Death Café: Wednesday August 7th (6-8pm)

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 and The Division of Palliative Care.

Registration is required for this FREE Death Café on Wednesday August 7th (6-8pm) via Eventbrite at: https://www.eventbrite.ca/e/death-cafe-tickets-914115994547?aff=oddtdtcreator

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 about Death Café, please visit https://deathcafe.com/

Image via YG2D For more information on YG2D visit https://www.yg2d.com/

Image via YG2D For more information on YG2D visit https://www.yg2d.com/

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

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

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)

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

FREE Death Café at McMaster University: August 9th (6-8pm)

I am honoured to facilitate a FREE Death Café on Wednesday August 9th (6-8pm) at the David Braley Health Sciences Centre, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

Registration is required for this FREE Death Café via Eventbrite at: https://www.eventbrite.ca/e/death-cafe-tickets-668976405437

Please note: 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 discussions about death. Interesting conversation is guaranteed! For more information, please visit Death Café https://deathcafe.com/

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

FREE National Community-Based Primary Palliative Care Community of Practice (CoP)

I am honoured to be co-presenting “Practical Tips: Lessons from the Front Line”, the final session in the National Community-Based Primary Palliative Care Community of Practice (CoP) series. This Continuing Professional Development is FREE for all health care professionals is part of The Palliative Care ECHO Project led by Pallium Canada.

This community of practice focuses on supporting primary care clinicians to integrate primary palliative care in their practices. It is geared towards interprofessional primary health care providers across Canada. Each session is accredited by the College of Family Physicians of Canada.

This is the final session in the second series, which includes 11 sessions taking place on a bi-weekly basis. All webinars are recorded and available for playback. Topics include:

Pain: Beyond the Basics: November 9, 2022

Communication: Part 1: November 23, 2022

Communication: Part 2: December 7, 2022

Palliative Care and Substance Use Disorders: January 18, 2023

GI Symptoms in Palliative Care: February 1, 2023

Delirium: February 15, 2023

Spiritual Care and Rituals Around Death and Dying: March 1, 2023

Palliative Sedation: March 15, 2023

Grief and Bereavement: Beyond the Basics: April 12, 2023

Practical Tips: Lessons from the Front Line: April 26, 2023 from 1–2:00 p.m. ET
 
Interested in becoming a part of this FREE COP? Visit The Palliative Care ECHO Project

April 16th is National Advance Care Planning Day in Canada.

It’s about conversations. It’s about wishes. It’s how we care for each other.

Advance Care Planning is about having conversations with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself in case of a health emergency. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals.

Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you are unable to consent or refuse treatment or other care.

1. Think about what is most important to you – your values, wishes and beliefs.

2. Learn about your overall health. This may include current conditions you want to better understand.

3. Decide on your Substitute Decision Maker(s), one or more people who are willing and able to speak, for you if you cannot speak for yourself.

4. Talk about your values, beliefs and wishes with your Substitute Decision Maker(s), family, friends and health care providers.

5. Record your values, wishes and beliefs in your Advance Care Planning Guide, in a letter, poem, video or audio recording.

Source: Advance Care Planning Canada

ADDITIONAL RESOURCES:

For more information on advanced illness, advance care planning, palliative care, end-of-life care and grief, please visit: 

Canadian Virtual Hospice www.virtualhospice.ca 

Living My Culture www.livingmyculture.ca 

Advance Care Planning Canada values a free, accessible and open shared knowledge amongst the community. The website provides you with all the necessary tools to inform yourself on the most recent advanced care planning updates and developments. For more information and FREE resources, visit: https://www.advancecareplanning.ca/

C. Elizabeth Dougherty Consulting Newsletter: Fall 2022

I am pleased to share my Fall 2022 Newsletter highlighting educational opportunities and my clinical work serving individuals, families, and healthcare providers facing complex illnesses, uncertainty and grief.

C. Elizabeth Dougherty Consulting Spring Newsletter