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).

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.

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

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. 

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.

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.

FREE Advance Care Planning (ACP) workbooks

April 16th is National Advance Care Planning Day in Canada

“If Not You, Who? Who would you trust to make your healthcare decisions? Planning for your future healthcare needs is important. So, we’re asking: Do you know what would happen if you couldn’t speak for yourself? Who would you trust to make those #healthcare decisions for you? 

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. 

• Think about who you would trust with making those important decisions for you. 

• Think about what matters most in your life and how that might help guide someone in making the kinds of healthcare decisions you would want.  

• The best time to think about this is now when you can speak for yourself. We have useful guides to help you along the way. 

Choosing a Substitute Decision-Maker (SDM)

Advance Care Planning policies can vary dependent on your province or territory. In order to ensure your end of life wishes are honoured it is crucial to have an understanding of your province or territory policies. This includes understanding what your #rights and #privileges are, as well as understanding the laws and regulations regarding end of life care, specific to your province or territory. While creating your advance care plan it is also important to make sure that you are using the correct documents for your province or territory. 

• Who do you trust most to make decisions for your health care that follow your wishes?

• Would that person be comfortable with making important decisions about your health quickly or in an emergency?

• Have you spoken to them about what matters most in your life? When someone knows what you value most in your life, they can make more informed decisions about your health care.

• What Matters Most? What does a good day look like for you?

• What situations do you find difficult?

• What gives you strength in difficult times?

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

• What do you value more: the possibility of a longer life, or the possibility of a better quality of life? 

These questions can help guide you and your substitute decision-maker and assist them to prioritize what matters most to you when weighing care options.

April 16th is Advance Care Planning Day. So, ask yourself: If not you, who?” 

Source: Advance Care Planning Canada 

There are multiple FREE Advance Care Planning (ACP) workbooks, toolkits and guides specifically created to follow the provincial/territorial requirements for your advance care plan. Visit for FREE FREE Advance Care Planning (ACP) resources across Canada https://www.advancecareplanning.ca/acp-across-canada/

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/

National Caregiver Day is the first Tuesday of April in Canada.

“More than 8 million family and friend caregivers in Canada are providing care in the home. Most caregivers will feel unprepared and overwhelmed at some point. If you are caring for someone who is ill or living with mobility challenges, these modules are for you.

Access them anytime of the day or night, as many times as you need, and at no cost (FREE) via https://www.virtualhospice.ca/caregiving/

These modules include useful information, strategies, and suggestions for preparing for and providing care as illness advances:

-Strategiesfor difficult conversations

-Video demonstrations of caregiving tasks 

-Guidance for recognizing and managing symptoms

-Suggestions for accessing programs and services

-Ways to care for yourself

Content is arranged in chapters and pages. Click a Chapter to see the pages and topics covered. You can move through the module pages using the list on the left-hand side or using the arrows at the bottom of the page. To return to the home page click the logo at the top left of the screen. Some modules include video clips showing how to do caregiving tasks or people sharing their experiences.”

Source: Canadian Virtual Hospice 

If you have questions, email info@virtualhospice.ca

#NationalCaregiverDay #CelebrateACaregiver

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

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

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.

C. Elizabeth Dougherty Consulting - Fall 2021 Newsletter

I am honoured to share my Fall 2021 newsletter including resources for individuals and families of all ages facing a complex illness, following diagnosis through to bereavement. I am also grateful to also share my teaching experiences including: undergraduate and graduate Social Work Education; undergraduate Medical Education; and Interprofessional Education for healthcare providers exploring informed conversations, honouring person and family-centred care, demystifying grief, and advocating for palliative care.

Demystifying Hospice Palliative Care is essential!

National Hospice Palliative Care Week in Canada is May 2nd-8th, 2021.

Proactive and equitable access to Hospice Palliative Care is not standard, with barriers (including a lack of education, funding and research) contributing to the myths that impact delivering high-quality person and family-centred collaborative care. Integrated support for loss, grief and bereavement is lacking.

Did you know....

-Between 62% and 89% of those who die could benefit from palliative care, including nearly everyone who does not die unexpectedly

- 51% of the children who died in 2012 only received Paediatric Palliative Care for the last 30 days of their lives

-62% of Canadians who received palliative care did so in an acute care hospital in their last month of life

-Few Canadians (15%) have early access to palliative care in the community

-80% of the time, palliative care was provided during admission was unplanned or through an emergency department  

-Canadians between the ages of 45 and 74 are more likely than younger adults and older seniors to receive palliative care

-There are ~88 residential hospices and the majority require a prognosis of <3 months to be admitted

Source: CHPCA Fact Sheet 2021 

For more information, please visit the Canadian Hospice Palliative Care Association

How Equity-Oriented is Palliative Care?

Join us for the free (online) Elizabeth J. Latimer Lecture in Palliative Care "How Equity-Oriented is Palliative Care" with the extraordinary Dr. Kelli Stajduhar.

C. Elizabeth Dougherty Consulting Newsletter Winter 2021

Honoured to share my Winter 2021 newsletter including resources for individuals and families of all ages facing a complex illness, from diagnosis through to bereavement. Grateful to also share undergraduate and graduate Social Work education, along with medical education and interprofessional education for healthcare providers demystifying palliative care.