Person-Centred Care

End Game Documentary and Discussion

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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

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

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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 

Innovative Undergraduate and Graduate Social Work Programs at Wilfrid Laurier University

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Honoured to be teaching with the Lyle S. Hallman Faculty of Social Work at Wilfrid Laurier University again this year. Excited to be teaching "Social Work Practice with Groups" to the Undergraduate Bachelor of Social Work Program, and "Advanced Practice with Families" to the Graduate Master of Social Work Program. 

For more information about the innovative B.S.W Program or the M.S.W. Program, please visit:  
https://www.wlu.ca/academics/faculties/faculty-of-social-work/index.html

Breaking Down Barriers in the Context of Complex Illness, Uncertainty and Grief

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Am truly honoured to be presenting "Breaking Down Barriers in the Context of Complex Illness, Uncertainty and Grief" at the Ontario College of Social Workers and Social Service Workers 2018 Annual Meeting and Education Day.

Serious illness, dying and grief remain taboo in society, yet the diagnosis of a serious illness has a profound impact on an individual and their loved ones, and often results in feelings of uncertainty, isolation and grief.

This presentation will explore the role of social work and social service work in providing compassionate care for individuals and families of all ages following the diagnosis of a complex illness, at end of life and into bereavement. I will speak to the roles of social work and social service work in providing education to demystify these issues and further advocate to break down barriers while promoting greater access to support, within our own practice and within our communities.

For more information, please visit:  http://www.ocswssw.org/members/amed/2018-amed/

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A Wonderful evening at the Burlington Death Cafe!

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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

Burlington Death Café. In Celebration of World Hospice Palliative Care Day

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In Celebration of World Hospice Palliative Care Day, and in support of the Burlington Compassionate City Charter and the Carpenter Hospice, the Burlington Death Café will be held on October 11th, 2017 from 7-9pm at Emma's Back Porch.

Death Café is an international movement where people, often strangers, gather together to eat, drink 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, 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!

This is a free public event, but seating is limited. For information, or to register, please visit Eventbrite

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

Cancer Mythbusters: Is Palliative Care Only for End-of-Life Patients?

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"Palliative Care is an often misunderstood specialty, focused on providing support and pain management strategies to cancer patients throughout all stages of their illness. This approach, which can be blended into curative cancer therapy, focuses on care for the whole person: mind, body, and spirit."

Source: Cancer Mythbusters - Is Palliative Care Only for End-of-Life Patients?

Calling for a Palliative Care Culture

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Palliative Care is the future of medicine "It has social and political dimensions that spring from its grounding in a commitment to relieve total pain, which includes spiritual pain."

Source: Calling for a Palliative Care Culture

Palliative Care: the Pearl of Great Price

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"Palliative care is the stance of being comfortable with the unknown, a stance that leads to the development of confidence, resilience, and empowerment in patients and families receiving the best care... we are all vulnerable, all subject to suffering, old age, and death..."

Source: Palliative Care: the Pearl of Great Price

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

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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

Practising compassion in an uncompassionate health system. Hearts in Healthcare

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"Yet, amidst the storm, some remarkable health professionals create a circle of calm. They go about their work in an unhurried way, finding time to greet their patients, put them at ease, listening deeply and offering kindness and compassion. They don’t neglect their clinical tasks, indeed they seem to get the work done with quiet efficiency. These inspiring workers go home with satisfaction and joy in their hearts. How is that possible?"

Source: Hearts in Healthcare Practising compassion in an uncompassionate health system 

Across the Continuum: The Need for Innovative Approaches to Person and Family-Centred Care

Was honoured to present Across the Continuum: The Need for Innovative Approaches to Person and Family-Centred Care, a H.I.T (Healthcare, Innovation, Technology) Talk at the Hospice Palliative Care Ontario 2017 Annual Conference "Accessing Compassionate Hospice Palliative Care Across the Continuum"  (excerpt below). 

From time of diagnosis so much is asked of those facing a life-limiting illness… Ultimately, they’re expected to “hold on” while also having to “let go”. How then can we consider innovative approaches to person and family-centred care across the continuum, at a time when healthcare providers are required to do more, with less?

I am honoured to say that I am a Social Worker, and there’s a phrase that rings true for me in the work that I do as I often step outside of my comfort zone. The idea of “leaning into the discomfort”. I’d like to reflect on why it’s important for every healthcare provider to consider the way we approach our work. 

Working within a frenetic yet extraordinary healthcare system, we face time-constraints, the demand for evidence-based competencies, the expectation of metrics and outcome measures, people often referred to by a medical record number or identified by a disease… quite often, healthcare feels rushed and impersonal… As a result, healthcare providers may not fully engage because of increasing practice demands and time constraints, they may avoid certain experiences where they don’t feel competent or hesitate to go those places when faced with uncertainty… 

In fact, much like life itself… acknowledging and meeting the challenges in the midst of uncertainty and chaos are really an integral part of our work. How then can we engage and enter those spaces when we feel that we don’t have time, when we don’t know the answers, or when we’re unsure of what we may find?

While the idea of creating and implementing innovations in practice may sound weighty, the definition of innovation is actually quite simple. Innovation is the introduction of something new… a new idea, method or device. That’s it. You don’t necessarily need to write a grant, or consider retraining, or apply to the research ethics board (and while that may be part of your innovation), introducing something new doesn’t have to be onerous, it can actually be something quite simple.

Hospice Palliative Care has always been ahead of the curve… in recognizing and valuing person and family-centred care, in acknowledging "total pain", in taking holistic approaches to supporting quality of life, to recognizing and integrating interprofessional collaboration. Innovations in Hospice Palliative Care remain essential today, and perhaps more so now than ever before. 

At present, we’re faced with tremendous opportunity. With the quality of living and dying on our social and political landscape, with Bill C-277 (An Act providing for the development of a framework on Palliative Care in Canada) passed by the House of Commons, with the provincial and federal governments acknowledging the need for increased funding in Hospice Palliative Care… we’re on the precipice of change. How then can we be agents of change, and consider innovative approaches to person and family-centred care across the continuum - from time of diagnosis, throughout the trajectory of an illness, at end of life and into bereavement?

We face the reality that many people, including many healthcare providers, assume that Hospice Palliative Care is nothing more than a euphemism for end-of-life care. That presents us with an opportunity… to continue to advocate and educate about the remarkable scope and breadth of Hospice Palliative Care across the continuum. But in doing so, it’s also important to consider, when does dying begin, and how can we support people to live well during that process?

Does dying begin the moment we’re born? Or when a fatal condition begins? Is it when that condition is recognized by a physician, or it when nothing more can be done to reverse the condition or to preserve life? As we know, the answer to that question varies from one person to the next…

While many focus on the quality of dying, or on death as a singular event, isn’t the whole end-of-life experience informed by the people and the events leading up to that death? 

It’s these processes that take place in the days, weeks, months and even years before the death that are of paramount importance and contribute to overall quality of life - and that’s where we, as a community of care providers, can have the greatest impact.

Healthcare providers are often inhibited by their anxieties about saying or doing the wrong thing. This is true for any clinician, beyond our formal training and education, we continually face new scenarios, challenging experiences and uncertainty… We need to step outside of our comfort zone, and with humility… explore person and family-centred innovative approaches to care in an effort to promote healing.

It’s a profoundly intimate experience when we are allowed to share that space with someone facing dying, death, grief and loss… that compassionate connection can transcend so many barriers, and sometimes, however momentarily, sometimes… it can even transcend suffering. That connection can be extraordinary.

I believe as Health Care providers in Hospice Palliative Care, we can continue to lean into our discomfort and remain open to uncertainty and to wonder. I believe, through our humility and vulnerability, we can create compassionate and innovative approaches to person and family-centred care, and in doing so, provide invaluable opportunities for people to connect, and collectively process experiences across the continuum - from time of diagnosis, through to end-of-life and into bereavement. 

As Dr. Rachel Remen explains, "the most important questions don't seem to have ready answers. But the questions themselves have a healing power when they are shared. An answer is an invitation to stop thinking about something, to stop wondering. Life has no such stopping places; life is a process whose every event is connected to the moment that just went by. An unanswered question is a fine traveling companion. It sharpens your eye for the road".

We’ll always face challenges and uncertainty in our work, but we need to be invested in innovative approaches to person and family-centred care, because as Dr. B.J. Miller says "Quality of Life isn't a Consolation Prize".

Informed Patient? Don’t Bet On It

"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."

Read the full article The New York Times

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/ 

The Conversation Placebo

"What’s often overlooked is that the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe."

What people talk about before they die

“I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.

They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.”

Why is it so hard to talk about dying? @whenyoudieorg #hpm

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"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."

Source: When You Die

The End Game: Conversations about Life and Death #hpm #ACP

Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death. 

For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about? 

We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.

For more details about our free event or to register please follow this link to EventBrite

How might we reimagine the end-of-life experience for ourselves and our loved ones? @OpenIDEO #hpm

“ ‘...I am asking that we make space – physical, psychic room, to allow life to play itself all the way out – so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.’ ~ BJ Miller

Each of our lives is a story. As we plan for its final chapter, we have the opportunity to incorporate our passions, relationships, and spirituality to make dying better. How might we make this process more human-centered so we can live fully until the very end? Let’s re-imagine how we prepare for, share and live through the final chapter of our story.”