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

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. 

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

April 16th is Advance Care Planning Day in Canada

April 16th is National Advance Care Planning Day in Canada, a day to promote conversations about your wishes and values for your future health and personal care in the event that you are unable to communicate for yourself. This year’s #ACPDay2021 is based on the theme "Advance Care Planning: An Essential Conversation for Everyone".

The ACP in Canada website - https://www.advancecareplanning.ca/acpday/ - features FREE downloadable resources, including posters and social media graphics for organizations and individuals across Canada to promote ACP.

Canadians have spoken, and although 80% of the population believes Advance Care Planning is important, less than 1 in 5 Canadians have an Advance Care Plan. Fortunately, the ACP website at www.advancecareplanning.ca is full of free information, tools, and conversation starters to help with starting the conversation. There are also links to provincial and territory-specific ACP resources across Canada.

How are you connecting with friends and family during these times? #ACPinCanada.

A Conversation... About Advance Care Planning, Life, Love, Loss & Legacy

SO grateful to have this conversation about Advance Care Planning, Life, Love, Loss & Legacy with Laurel Gillespie at Advance Care Planning Canada with the Canadian Hospice Palliative Care Association.

Creating safe spaces for people to have informed conversations about wishes and values is so important. Exploring and honouring connections and meaning for any individual and family in the face of illness and loss can be invaluable.

Please join us for a discussion about these invaluable conversations, while also exploring ways to connect with healthcare providers, and most certainly, with those we love.

Consider who, and what, gives your life meaning? Not just at the end of life, but now. It’s never too soon, but it can be too late.

Click here to listen to this episode of “A Conversation With…”

#BustingTheMyths about Hospice Palliative Care

It’s Hospice Palliative Care Week in Canada. 

The campaign (May 5th – 11th) this year focuses on #BustingTheMyths about Hospice Palliative Care

This year, the Canadian Hospice Palliative Care Association (CHPCA) designed a “Busting the Myths” campaign as a response to the need to educate Canadians including caregivers, physicians and all healthcare providers, citizens and political leaders around common myths about hospice palliative care.

The #BustingTheMyths campaign aims to empower Canadians through education by identifying and clarifying misperceptions about Hospice Palliative Care in Canada.

Working together to educate one another is a vital step in the pursuit of excellent Hospice PalliativeCare.

Source: CHPCA Canadian Hospice Palliative Care Association

End Game Documentary and Discussion

Excited to co-host and participate on the panel for the launch of the 2018-9 season of "The 100% Certainty Project. Death: Something to Talk About". Join us for a screening of the Netflix documentary, "END GAME" followed by a conversation with Palliative Care clinicians.

Our free public event at McMaster University features the brilliant documentary "End Game" from Shoshana Ungerleider, MD highlighting the essential tenets of Hospice Palliative Care. The film showcases the collaboration, compassion and communication as the heart of person and family-centred care at UCSF Medical Center with Steven Pantilat and the extraordinary interprofessional team. The film also highlights the brilliant work of Zen Hospice Project, showcasing Dr. BJ Miller and the extraordinary interprofessional team in Hospice.

Please join us for this engaging event! While the event is free, registration is required via Eventbrite via https://www.eventbrite.ca/e/end-game-documentary-and-discussion-tickets-50535681584

Almost all Canadians would benefit from palliative care. Only one in seven can actually access it at end-of-life

“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.

Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.

Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.

That’s the failure point – and that’s what we need to fix.

There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.

Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.

But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.

All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.

The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail

Professional Competencies with the Michael G. DeGroote School of Medicine at McMaster University

Thrilled to be teaching Professional Competencies with the Michael G. DeGroote School of Medicine at McMaster University.

"In Pre-Clinical studies, Professional Competencies (Pro Comp) runs in parallel to the Medical Foundations. Groups of 8-10 students work with a pair of facilitators, one MD and one a clinician from a different discipline. The groups stay together for the entirety of Pre-Clinical, meeting every Tuesday morning for 3 hours. They explore material covering seven domains: effective communication, medical decision-making, moral reasoning and ethical judgement, population health, professionalism and self-awareness and self-care, interprofessional practice and social, cultural and humanistic dimensions of health." via https://mdprogram.mcmaster.ca/mcmaster-md-program/what-is-compass2/pre-clinical/pro-comp 

A Wonderful evening at the Burlington Death Cafe!

Thank you to all in attendance this evening at the City of Burlington, Ontario Death Cafe in support of World Hospice Palliative Care Day, The Carpenter Hospice and the Compassionate City Charter. It was indeed an uplifting evening of inspiring conversations (& lots of laughter!). Great opportunity to demystify the incredible breadth and scope of Hospice Palliative Care!

Special thanks to the staff and volunteers of Carpenter Hospice who gave of their time this evening, and to our wonderful hosts at Emma's Back Porch & Water Street Cooker!

Next Burlington Death Cafe is in April in support of Advance Care Planning Day! #talkaboutdeath

Patients feel psycho-social impact of chemo more acutely than physical side effects

Highlighting the need for integrated Person and Family-Centred Care...

"The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease" 

Source: Patients feel psycho-social impact of chemo more acutely than physical side effects. MedicalXpress

What can Palliative Care Do?

"When you are facing a serious illness, you need relief from symptoms. You need to better understand your condition and choices for care. You need to improve your ability to tolerate medical treatments. And, you and your family need to be able to carry on with everyday life. This is what palliative care can do." #SeriousIllness #PalliativeCare  

For more information visit Get Palliative Care

How to Die Well

"To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture."

Read the full article at Time

The diagnosis of a serious Illness. Important considerations to discuss with the Healthcare Team

Starting a Conversation with Your Healthcare Team

Whether you or a loved one have been newly diagnosed with a serious illness, or have been told your disease has progressed, you will have to make decisions about treatment. You may have many thoughts and emotions at this time. This can be a time of uncertainty and it is common to feel worried. It can be helpful to ask your healthcare team questions about what to expect, how to plan and what support and resources are available to you and your family. 

It can be helpful to ask your healthcare team questions about your illness so that you can best understand your treatment options. The following is a list of questions that may help you to make informed decisions about your plan of care. Please ask these questions if they are helpful in guiding you and your family, or ask whatever questions are important to you. It can be helpful to bring your list of questions to your medical appointment and record/write down the answers. If you have the support available, you can have someone accompany you to your appointments to listen and help record the details. 

Some questions you may ask your Healthcare Team: 

• Is the condition short or long-term? Reversible or irreversible? 

• Is the Illness curable or incurable?

• What types of treatment are available to treat the illness/condition? 

• Where is this treatment offered? Hospital? Clinic? Home? 

• What is the goal of treatment (cure, manage pain/symptoms, improve function, extend life)? 

• If the goal of treatment is to extend-life, how long does the average person live while receiving this treatment? What about those who do not receive this treatment? 

• How often is this treatment successful? 

• Does having this illness/condition impact the effectiveness of treatments/
interventions one might receive in an Intensive Care Unit? 

• What are the common risks and side effects of this treatment? Are there any possible dangers connected to this treatment? 

• Where and how often will I receive this treatment? How long do you expect this treatment to continue? 

• Is there a financial cost associated with this treatment? 

• When and how will you know if these treatments are working? 

• When or why might these treatments stop? If this treatment stops, what are other treatment options? 

• How will this treatment impact my life? What are the expected physical, emotional, psychological and practical issues? 

• What type of additional support is available to me? What about my family? 

• What are the physical, emotional, psychological and practical resources that
can help? How do I/my family access them?

It is important to take time to have conversations about your treatment with your healthcare team. Please ask questions that are important to you. Honest and open communication about your healthcare is so essential. 

Death Café Burlington

In Celebration of National Advance Care Planning Day, Death Café Burlington will be held on April 12th, 2017 from 7-9pm at Saving Thyme.

Death Café is an international movement where people, often strangers, gather to eat cake, 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 Cafe, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than grief support or a counselling session. It is a respectful, public event where people of all communities and belief systems are welcome to have discussions about death. Interesting conversation is guaranteed!

To register for this free event in support of the Compassionate City Charter, please visit Death Café Burlington

For more information about Death Café, please visit http://deathcafe.com/ 

When Patients Leave ‘Against Medical Advice’

"As physicians, we must explore our patients’ reasons for wanting to be discharged and have open and truthful conversations with them. We assume that keeping them in the hospital is always better for their health. But health encompasses the physical, mental and psychological.

In the end, my patient’s leaving was not about our therapeutic alliance. It was not about me at all. It was about her, the patient, as it should be."

Why Talking About Death Is the Key to the Longevity Revolution

"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."

Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman

The End Game: Conversations about Life and Death. A Free Public Event. Oct. 2nd 2016

Please join us as we host this free event. For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all die. This is an upbeat, interactive session that provides evidence-based tools regarding advance care planning, hospice, palliative and end-of-life care. Let's talk. Do you have an End Game?

For more information or to register, please visit Eventbritehttps://www.eventbrite.ca/e/the-end-game-conversations-about-life-and-death-tickets-27665945588?aff=efbevent

‘Extremis’ Trailer: Netflix Documentary Examines Realities of End-of-Life Care

"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.

'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.

The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.

The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."

Source: IndieWire. September 6, 2016

"Extremis" Trailer