The Waiting Room Revolution

In this episode, Hsien speaks with Mary Hodgson, Director of Inclusion and Social Innovation at St Christopher’s Hospice in London, about making end-of-life care more inclusive, community-led, and socially just. Mary discusses what death literacy means, whose knowledge it represents, grief, power imbalances in healthcare, and why relationships with communities matter. She shares examples from the Croydon Death Literacy Network, a participatory arts project on bereavement during COVID-19, and the co-produced Bereavement Buddies program. The conversation also explores community perspectives on assisted dying, including concerns about “system coercion,” and closes with Mary’s reminder that meaningful change can begin wi...

In this episode Hsien chats with author, cancer survivor and consultant, Munira Premji. She tells us about her book, 'Choosing Hope: One Woman, Three Cancers', and the six actions that helped her go from surviving to thriving.  She and Hsien discuss how the actions outlined in her book line up and with the Seven Keys. 

Learn more about Muniras work here: https://munirapremji.com/why-i-do-this-work/ 

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

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In this episode, Hsien talks with Brenda Blais, lifelong caregiver and disability rights advocate, about caring for her daughter Nikki, who lived with complex medical needs for nearly 30 years. Brenda shares how she found her voice as an advocate, partnered with care teams, and kept Nikki’s joy and quality of life at the center of her care. She also reflects on Nikki’s end-of-life journey and offers practical advice for caregivers and the people who support them. 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

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In this episode, Hsien talks to Dr. Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance, about his extensive career in hospice and palliative care. Dr. Connor reflects on how the field has evolved, ongoing gaps in access to palliative care, and the importance of families, communities, and lived experience in shaping care. He also shares lessons from global advocacy and what it takes to reduce preventable suffering.

Read more about Dr. Connor's work here: https://stephenconnorphd.net 

Read more about the global atlas of palliative care visit: https://cdn.who.int/media/d...

In this episode, grief and life coach Linda Levine shares how her husband David’s ALS diagnosis reshaped (but didn’t erase) their love story. Linda and Hsien chat about protecting caregiver identity, asking for help, navigating grief in a death‑denying society, and reclaiming intimacy and joy even as illness progresses. Linda shares how ALS may change a body, it doesn’t have to take two lives. Learn more about Linda on her website: https://www.surpriseenterprise.com/about 

Visit our website to learn more about our work, check out the book and workbook, view our resources...

In this episode, Hsien talks with Dr. Mary Ellen Macdonald, a social scientist and palliative care researcher working in Halifax, Nova Scotia. Hsien and Mary Ellen discuss the importance of grief literacy, death literacy, and person-centered care in palliative medicine. We also chat about grief at work, and how timing played an important role in community expressions of grief in Nova Scotia. Read more about Mary Ellens work here: https://medicine.dal.ca/departments/department-sites/medicine/divisions/palliative-medicine/our-people/faculty/maryellen-macdonald.html 

Visit our website to learn more about our work, check out the book an...

In this episode of Waiting Room Revolution, Hsien talks with Dr. Dan Dorevitch, a pediatric palliative care physician in Australia. Hsien and Dan discuss the nuances of pediatric palliative care and how communication strategies apply across the entire age spectrum in healthcare. 

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

A longtime palliative care navigator, Bill Harder returns not as a professional, but as a husband alongside his wife Anna, who is living with stage 4 breast cancer. Together, they share how they’ve navigated a delayed diagnosis, chose quality of life over aggressive treatment, and use dark humour, honesty, and deep love to “walk two roads”.  They talk about death binders, funeral pre-planning, and the village that holds them, showing what it looks like to grieve as you go and still embrace joy. The episode closes with a powerful AI-generated love song Bill created for Anna, “Live Till She Dies,” a...

In this episode, Hsien and Sammy talk with RN and project director Kira Goodman and pediatric palliative care physician Dr. Dave Lysecki about what makes pediatric palliative care unique, why it’s not “too sad,” and how early, family-centered support can transform the journey for children with serious illness. They also explore the creation of Canada’s Pediatric Palliative Care Alliance and its efforts to build a unified, equitable approach to care across the country. Learn more about the Alliance here: https://www.pediatricpalliativecare.ca/ 

Visit our website to learn more about our work, check out the book and wor...

In this episode, Hsien and Sammy chat with Sunny Brouse. Sunny was diagnosed with ALS over a decade ago and leads a global community of young women with ALS. We talk about her long, disorienting road to diagnosis, what clinicians miss when they focus on function over quality of life and how dark humor, planning ahead and honest talk can protect hope. Learn more about Sunny's journey here: https://sunnystrong.com/ 

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.c...

In this episode, Hsien and Sammy sit down with Barbara MacLean, Executive Director of Family Caregivers of British Columbia and a leading voice for caregivers in Canada. Barbara shares her powerful origin story from supporting children with disabilities in grade six to becoming a national change agent for family and friend caregivers. We also chat all things caregivers, including visibility and distress and ways to combat both. To learn more about Barbara's work visit: https://www.familycaregiversbc.ca 

Visit our website to learn more about our work, check out the book and workbook, view our resources and t...

In this episode, Hsien chats with Ella Tan, an Employment and Family Support Worker and Caregiver Advocate. They chat about the hidden realities of paid care providers in Canada including immigration hurdles, debt, family separation, and the blurred boundaries of working in employers’ homes. Ella shares how community networks, settlement supports, and policy change can transform not only caregivers’ lives but the quality and dignity of care for everyone. Check out Ella's podcast here: https://open.spotify.com/show/3FjXuS9QV9zxyEI4lhHYHT 

Visit our website to learn more about our work, check out the book a...

In this episode, Hsien and Sammy chat with Dr. Myles Sargeant, family physician and planetary health expert. We chat about how healthcare can reduce its environmental footprint with delivering better care, heat islands and why home based palliative care is one of the greenest things we can do. Learn more about Myles work here: https://greenhealthcare.ca/ 

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

Our theme song is Maypole by Ketsa and...

In this episode Pierre and Sherrie Marchand share how a rare, terminal uveal melanoma upended their retirement and reshaped their lives. They reflect on vision loss, caregiving, family impact, and how The Waiting Room Revolution helped them find clarity, voice, and a way to balance hope with planning ahead.

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

In this episode, Hsien speaks with Canadian dementia advocates Christine Aiken and Myrna Norman, who share how they moved from isolation and fear after diagnosis to lives filled with purpose, community, and hope. They debunk common myths about dementia, describe simple but powerful person-centered practices families and communities can adopt right away, and show how support groups, creativity, and inclusion help people with dementia continue to live well and thrive.

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

In this  Hsien talks with Dr. Chetna Malhotra, a leading palliative care and health services researcher in Singapore. They explore the gap between what people say they want at the end of life and the care they actually receive, especially in hospital-heavy systems. Together, they unpack how culture, family, and religion shape decisions, and why advanced care planning should focus less on fixed choices and more on preparing families for real-time decisions. Dr. Malhotra also shares how digital tools and caregiver support innovations like the Care Buddy app are helping patients and families navigate serious illness.

To l...

In this episode, Hsien chats with Ontario Funeral Director Sarah Sunnucks about what really happens after someone dies and why funeral pre‑planning is one of the greatest gifts you can give your family. Sarah shares the hidden legal and administrative burdens families face, powerful stories of when planning was (and wasn’t) done, and emerging options like green burial. 

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

Our theme song is Maypole by Ketsa and is lic...

In this episode, we chat with grief therapist and thanatologist Andrea Warnick. We discuss the importance of including children in conversations about serious illness and death. Andrea shares her experiences and strategies for helping children cope with loss and shares some free and low-barrier resources you can use.

Resources to help children with grief:

https://kidsgrief.ca/

https://youthgrief.ca/ 

https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Children+at+the+Bedside+of+a+Dying+Family+Member+or+Friend.aspx 

Visit Andreas website fo...

Donna Thomson, longtime caregiver, advocate, and author, returns to share a very different story: her own diagnosis of high‑grade bladder cancer. In this episode, she talks about the shock of shifting from caregiver to patient, how she advocated for herself to get answers, and the anxiety of living with a high risk of recurrence. Donna describes how the 7 Keys workbook became her “cognitive lifeboat,” helping her and her husband clarify their priorities, plan for aging, and navigate conversations about fear, privacy, and support. She also shares how her yoga community, her caregiving work, and projects like the Caregiving Essent...

In this episode, Renee Moor, psychotherapist, death doula, and founder of Journey Home Support, shares her personal journey through grief, the lessons learned from profound loss, and her mission to bring compassionate community support to end-of-life care. We discuss how embracing death and mourning can offer meaning, connection, and empowerment for individuals and families.

To learn more about Renee's work visit: https://www.journeyhomesupport.com/

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and workbook...

This episode features our conversation with resilience expert Dr. Lucy Hone. We discuss grief, living with loss, and practical tools for navigating tough times. Lucy shares personal stories and research-backed insights offering hope and empowering advice for anyone facing adversity.

Learn more about Lucys work here: https://www.drlucyhone.com/

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

This episode features our conversation with Dr. Ashwin Kaniah, an Australian general practitioner and palliative care consultant. Ashwin shares his journey from family medicine to palliative care, highlighting the importance of early, holistic, and individualized approaches for patients and families. We discuss the challenges and opportunities in making healthcare more inclusive, especially for LGBTQI+ communities, and discuss Ashwins award-winning research . Learn more about his work here: https://www.australianageingagenda.com.au/education-training/providing-inclusive-palliative-care/

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work...

This episode features our conversation with Dr. Emma Clare, end-of-life doula and CEO of End of Life Doula UK. Emma shares her journey, the evolving role of doulas, and the importance of compassion, communication, and community in end-of-life care. We explore how empowering patients and families, breaking down taboos around death, and building a more supportive culture can change life’s final chapter.

Learn more about Emma's work and End of Life Doulas UK: https://eol-doula.uk 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to...

This episode we welcome Stephanie Muskat, a registered Social Worker, therapist, and founder of Compassion in Caregiving. Stephanie shares her moving journey caring for her mother and grandmother. We discuss the emotional and logistical challenges families face, the importance of advocacy, and how her personal experience inspired her to support other caregivers.

Find more of Stephanie's work here: https://compassionincaregiving.com/

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/

Our theme song is Maypole...

In this heartfelt episode, Heike and Richard share their family’s journey through the end-of-life care of their two sons. Through stories of loss, advocacy, and resilience, they reveal hard-won lessons about love, hope, and what truly matters in life and healthcare. 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

This episode features Dr. Tammy Pegg, a cardiologist, and Jane Goodwin, National Program Manager for advanced care planning in New Zealand. We discuss the evolution of CPR understanding, the importance of advanced care planning, and the challenges of aligning medical care with patient values. The episode delves into New Zealand’s national efforts to promote shared goals of care, empower patients and families, and support clinicians in having compassionate, person-centered discussions. 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the...

This episode features our conversation with young caregivers Rosie Paulyk, Terrance Ho, and Stéphane Alexis. They share personal stories about caring for loved ones at a young age,  how caregiving shaped their identities, careers, and relationships, and share their advice for supporting youth in similar roles. We also chat about the power of community, resilience, and the importance of recognizing young caregivers everywhere.

Learn more about their work here:

Terrance's website: https://terrence-ho-i3c7da.mailerpage.io/family 

Rosie's website: https://chronicoasis.com/our-mission 

Stéphane's website: https://www.stephanealexis.com/ ...

This episode features our conversation with Funeral Director and End-of-Life Doula Bec Lyons, from Tasmania, Australia. We chat about her unique approach to death care, emphasizing home funeral service and natural burial methods. We also chat death literacy and reimagining funerals to be more personal and community focused. Learn more about Becs work HERE.

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

In this episode, we welcome James Norris, founder of the Digital Legacy Association and pioneer in end-of-life technology, to explore the vital topic of digital legacy. James shares the personal story that inspired his mission, explains why planning for our digital lives is more important than ever, and offers practical advice for safeguarding memories, messages, and digital assets. To learn more about James' work visit: https://www.jamesnorris.me 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out th...

In this episode, we chat with Shameem and Kerry, a dynamic Dietitian and Speech-Language Pathologist duo who have spent nearly two decades working together in a multidisciplinary ALS clinic. In this episode, they share how humor, empathy, and proactive planning shape their approach to patient care.  We also explore common misconceptions about their professions and how the “hope for the best, plan for the rest” philosophy guides their work. 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and wo...

This episode features our conversation with influencer and author Hospice Nurse Penny aka Penny Smith. We chat about how she uses her platforms to advocate for normalizing death and addressing death anxiety. Learn more about her work here: https://www.hospicenursepenny.com/

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0

Visit our website to learn more about our work, check out the book and workbook, view our resources and to join our newsletter: https://www.waitingroomrevolution.com/ 

In the final episode of Season 10, we reflect on the journey and the success of the Waiting Room Revolution. We discuss the global resonance, the importance of self-advocacy, and the creation of our community. We also introduce the Applying the 7 Keys Workbook designed to help individuals navigate the healthcare system. We also introduce the "Workshop in a Box" for community educators to facilitate workshops and spread the message, aiming to empower patients and families worldwide.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information...

In this episode we explore the final key, “Invite Yourself,” which encourages patients and families to become respectfully assertive in their healthcare journey. Rather than waiting to be asked, individuals are empowered to speak up, ask questions, and take an active role in their care. We discuss how this mindset shift can lead to better communication, improved understanding, and more meaningful experiences, especially for those who feel marginalized or overwhelmed. Through real stories and practical tips, we emphasize that inviting yourself isn’t about being demanding; it’s about recognizing your right to be heard and informed.

Our Work...

In this episode we talk about the key "Connect the Dots" - a crucial strategy for patients and families navigating complex healthcare systems. We explore how being the "illness manager" can transform healthcare experiences, the importance of having someone who can coordinate care, track medical information, and serve as the "glue" between different healthcare providers.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/

Our theme song is Maypole by Ketsa and is licensed un...

In this episode, we dive deep into the fifth key: Anticipate Ripple Effects. We discuss how serious illness impacts not just patients, but their entire support network. We share personal stories and insights about building strong support systems, caring for caregivers, and understanding the emotional journey of those surrounding a patient. We also give some tips to providers.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/

Our theme song is Maypole by Ketsa and is licensed under...

In this episode we discuss the fourth key: Customize Your Order. We chat about how you can transform your illness experience from a one-size-fits-all approach to a personalized journey that truly reflects your values, preferences and unique self. We also talk about communicating what matters most to you, and why being treated as an individual-not just a diagnosis- is crucial to maintaining you sense of identity and dignity.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/

In this episode of the Waiting Room Revolution, we explore the powerful third key: "Know Your Style." We discuss how understanding your unique personality can transform your healthcare experience, how learning practical strategies for navigating illness can reduce family conflict, and how knowing your style gives insight on approaching challenges. We also chat about how important this can be for Health Care Providers and provide some strategies on how to ask these questions.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www...

In this episode we discuss the second key: Zoom Out. We discuss how information is a superpower, ways to get it, how to use it and how it can maintain hope all throughout an illness journey. We also discuss how everyone - patients, families, and healthcare providers - has a role in creating a more transparent, supportive healthcare experience.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/

Our theme song is Maypole by Ketsa and is licensed...

In this episode, we discuss the first of seven keys to navigating serious illness: Walk Two Roads. We chat about breaking through toxic positivity, communicating openly about illness, reducing uncertainty and maintaining personal agency during challenging times. We share stories and experiences that people have shared with us about why constant positivity can be harmful, how patients can find strength in embracing both hope and preparation and much more!

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/

This episode we are talking about When Time is Running Out. We chat about demystifying dying, challenging healthcare norms, misconceptions about hospice and medical assistance in dying (MAID), how patients and families can reclaim power in their healthcare experience & much more.

Our Workbook: Applying the 7 Keys for Navigating a Life-Changing Diagnosis is available at select retailers now! Visit our website for more information: https://www.waitingroomrevolution.com/ 

Our theme song is Maypole by Ketsa and is licensed under CC BY-NC-ND 4.0