Family Engagement

Free Family Event Celebrating Life, Death and Meaningful Connections

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Grief and Loss impacts Everyone.

Am honoured to co-host and co-facilitate this free public event. In support of Children's Grief Awareness Day and National Bereavement Day, "The 100% Certainty Project – Death: Something to Talk About" is hosting a FREE public event for parents and children at the Hamilton Public Library. Please join us for:

- a reading of the children’s book The Funeral by Matt James, award-winning Author

- a creative family activity exploring grief, loss and meaningful connections

- grief and bereavement resources from Canadian Hospice Palliative Care Association & Canadian Virtual Hospice

CBC Books on The Funeral: "This sensitive and life-affirming story will lead young readers to ask their own questions about life, death and how we remember those who have gone before us"

Please note, this is not a counselling session or grief support group.

While this is a free event, registration is REQUIRED via:  https://www.eventbrite.ca/e/free-public-event-for-parents-and-children-on-grief-and-bereavement-tickets-50531981517

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

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

Unfinished Business in Families of Terminally Ill with Cancer Patients

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" Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without."

Source: Unfinished Business in Families of Terminally Ill with Cancer Patients

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

Parenting Through Illness & Grief

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"This one page handout provides an overview of the findings from a research study of parent caregivers. The study was conducted as a collaboration between Dr. Jay Children`s Grief Centre and the Nanny Angel Network" 

Source: Parenting Through Illness & Grief. Canadian Virtual Hospice

Death: A Part of Life. A 5-Part Mini Series (podcast)

Am honoured to have been a guest panelist on the final instalment of Death: A Part of Life - Part 5: The Grieving Process.

This informative 5-Part radio series with the Dr. Bob Kemp Hospice aired on CHML 900. Each week panelists including caregivers and healthcare professionals convened to open up a conversation about dying, death, grief and loss. The series explores issues such as: coping with the diagnosis of a serious illness; demystifying hospice palliative care; exploring available supports and services; advance care planning; the dying process and grieving which ultimately impacts us all.

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The links to the podcasts of Death: A Part of Life are listed below:

 Death, A Part Of Life - Part 1: Palliative Care

It’s a fact of life that at one point we all will die. But is it all as simple as that? Bill Kelly and the Bob Kemp hospice will be discussing grief, relief and the acceptance of passing away. On today’s show we discuss what happens when you’re told you don’t have much time left, and whether healthcare is asking too much of caregivers, and whether people are prepared for palliative care.

Death, A Part Of Life - Part 2: Changes To Palliative Care.

For our second show, we will discuss what the palliative care system is now, how it works and what changes need to be made. What does one of our local MPPs hear from his constituents about healthcare and in particular, palliative care? How would changes affect patients? Does fear have a hold on how we make our decisions once we’re diagnosed as palliative? An example of this is whether to choose palliative care or medically assisted death.

Death, A Part Of Life - Part 3: Religion and Palliative Care.

We continue our series this week with two topics. The first one will be discussing the experience of death. Everyone treats death in our world differently. But is it strictly a medical experience or is it a spiritual one? In our second half, we will talk about access to palliative care services in various sectors of our society. How do we help the vulnerable and the community obtain access to proper palliative care?

Death: A Part of Life - Part 4: Bucket lists and preparation.

Life should be celebrated at all stages, whether it be infancy, adulthood and as life comes to a close. So how can we make the most out of life? How can those who are in palliative care achieve their “bucket list” dreams before they pass, and how does it apply when it comes to their own personal circumstances? How do we define a “bucket list”? How wise is it to be prepared for eventual health issues? How should we plan for advanced care and how does it affect the family? How do we navigate through the difficult decisions and pain to provide care for loved ones who are palliative?

Death: A Part of Life - Part 5: The grieving process.

The final instalment in our series sees us discussing grief and how this isn’t just an event that happens in life but a process that families have to go through. How do families grieve the loss of a loved one? How can we support one another and how does grief affect children?

Source: Global News. AM 900 CHML

Camp Erin: Where Children and Teens Learn to Grieve and Heal

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Am honoured to volunteer with Camp Erin. It is indeed a remarkable community and one that nurtures capacity in children and youth to grieve the death of a loved one.

"Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.

Camp Erin is offered in every Major League Baseball city as well as additional locations across the U.S. and Canada. The Moyer Foundation partners with hospices and bereavement organizations to bring hope and healing to thousands of grieving children and teens each year.

Camp Erin allows youth to:

  • Tell their story in a safe environment
  • Process grief in healthy ways
  • Meet friends facing similar circumstances
  • Learn they are not alone
  • Build a tool-box of coping skills
  • Honor and memorialize loved ones
  • Have fun!"

Source: Camp Erin. The Moyer Foundation 

For information on Camp Erin locations in Ontario, please visit: Camp Erin Hamilton; Camp Erin Toronto; Camp Erin Eastern Ontario; Camp Erin Montreal

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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

Who Will Care for the Caregivers?

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"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.

For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".

A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness

This video provides a brief overview of an expressive arts project that I complete with families of all ages, following the diagnosis of a life-limiting illness, through to end-of-life and into bereavement. Presented at the 13th Annual Innovations in Palliative Care – Leadership, Courage & Community. McMaster University. Department of Family Medicine. Division of Palliative Care. Faculty of Health Sciences (November 2016). This project serves as a therapeutic intervention facilitating communication and honouring connections in the context of life-limiting illness and can be completed by anyone, anywhere at any time. 

It’s a profoundly intimate experience when we are allowed to care for someone… that compassionate connection can transcend so many barriers, and can sometimes even transcend suffering. That connection can be extraordinary.

We all have a role to play in helping to honour someone’s legacy. I believe as Health Care Professionals, like those we care for - we can be courageous in the face of illness, and vulnerability and uncertainty…

We can step out from behind the protection of our roles and in doing so, provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life and into bereavement. 

Source: You Tube. A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness

Having tough end-of-life conversations — before it's too late

“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark.  They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’ 

If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.

‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”

LETTING GO: What should medicine do when it can’t save your life?

“People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”

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

Celebrating Connections: A Creative Legacy Project #hpm

Grateful for hosting and to all in attendance honouring connections.

Legacy Art Workshop Art Gallery of Burlington for the launch of the Compassionate City Charter - Burlington via @snapdBurlington

Celebrating Connections: A Creative Legacy Project. A Free Public Event. Oct. 6th 2016

I am hosting a free event dedicated to making Hugs. "The physical embrace of a Hug is comforting for anyone in a time of need. In this instance, it is a creative legacy project that can be completed by anyone, anywhere at any time and is then exchanged as a lasting memento". This is a family event and appropriate for children of all ages. Please join me.

For more information or to register please visit Eventbrite https://www.eventbrite.ca/e/celebrating-connections-a-creative-legacy-project-registration-27657060011

An Innovative Approach to Family-Centred Legacy Projects

I am a Palliative Social Worker and for the past 17 years have had the privilege of caring for people facing a life-limiting illness.  It is an intimate and profound experience - sitting alongside people as they face end-of-life.  They share their hopes and fears - about living and dying - and about caring for and leaving behind those they love.  Trying to protect their families while also wanting to prepare them.  Grieving these losses begins at time of diagnosis.

I recognize the importance of creating safe spaces and making time to have these essential conversations.  A specific legacy project creates opportunities for the individual and family* to do just that - to hold on, while letting go.  We meet together to explore the impact of the illness, to talk about goals and plans, to acknowledge their grief and honour connections.  This project can be completed with families large or small, and include children of all ages.  That Project? While the results have been profound, the activity is, quite simply, creating a “Hug”. 

The physical embrace of a Hug is comforting for anyone in a time of need.  In this instance, it is a creative legacy project that can be completed by anyone, anywhere at any time and is then exchanged as a lasting memento.  The Hug can be taken to any significant place or event: to school, a little-league playoff game, during an admission to hospital or hospice, or even once someone has died, these hugs can be buried or cremated and remain with a loved one forever.

Although tantamount to making a scarf, it is more importantly symbolic of the outstretched arms of a loved one, it becomes a personalized “Hug”.  The components are basic… a flat sheet, markers or fabric paint, scissors and willing participants.  After laying a sheet on the ground, one person lays on top of the sheet while another traces around their outstretched arms and hands.  After sitting up, lines are drawn connecting each arm and then taking scissors, cut along the outline.  Each Hug is then adorned with messages and images of the shared connection and becomes a tangible expression of their love. 

I have completed this activity with anyone wanting to participate, whether ambulatory or bed-bound.  For those who are bed-bound, after carefully sliding a sheet behind their shoulders, the family tenderly helps to hold and trace their outstretched arms and hands.  Throughout this activity, the individual and family share stories and a profound connection, with each gentle movement and precious memory cultivating an incredibly intimate experience.

Language, distance or time do not serve as barriers.  I have completed this activity when families speak a language different from my own.  Despite communicating through an Interpreter, the conversation remains seamless throughout as the family creates a beautiful and moving tribute while supporting each other in their shared love and grief.  This supportive intervention has also bridged great distances, even though families were thousands of miles apart, they completed and sent their personalized hugs via courier to be at the bedside of their dying loved one.  I have also completed this project with children following the death of a parent (many of whom had not been informed about the disease or prognosis in advance).  Although a parent - or any loved one might die before the family has an opportunity to have these conversations, it is so important to facilitate therapeutic activities to collectively express their grief while honouring the connection with their loved one.  

While this “Hug” is essentially an expressive arts project, it creates and holds significant therapeutic value for all involved.  It is a collaborative experience for the family to honour connections while preserving a legacy.  Though each experience is unique, what remains universal are the shared laughs, tears and a multitude of stories - whether with a partner, children, grandchildren, siblings, parents, cousins, friends (or all of the above), they create reminders of shared experiences, connections and precious memories. 

I believe as Health Care Professionals, we can provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life and into bereavement.  I feel extraordinarily privileged that families allow me into their lives - however brief, I hold that time as sacred and do all I can to foster these connections while honouring the legacy of those living and dying.

(family* is defined by the individual - be it partner, children, parents, siblings, neighbour, friend, etc.)

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

Storytelling in Grief: Honouring Connections while Celebrating Legacies #hpm

“I don’t know how to tell my family about the diagnosis…” “I haven’t told my kids that I’m dying…”

Families often reeling following the diagnosis of Cancer or other life-limiting diseases, struggle with how, and when, to have those essential conversations. I am a Social Worker and for the past 17 years have had the privilege of caring for people facing a life-limiting illness. It is an intimate and profound experience - sitting alongside people as they face end-of-life. They share their hopes and fears - about living and dying - and about caring for and leaving behind those they love. Trying to protect their families but also wanting to prepare them. Whether they speak lovingly about a partner, or children, or siblings, parents or best friends… grieving these losses begins at time of diagnosis.

While treating and managing the disease is important - equally important is caring for the person diagnosed with the disease. What is truly important to them? Who is important to them? How do we provide support in a manner that is congruent with their values and wishes? How do we normalize grief following a diagnosis, and in turn, sit alongside them creating safe spaces - and time - to share their grief should they so choose? As clinicians, we can facilitate supportive interventions at any stage of illness and ideally engage the entire family. Sadly, many families - and specifically many children and youth remain uninformed following the diagnosis of a life-limiting illness, largely resulting from parents need to “protect” and their fear of not knowing what to say. This phenomenon is not rare as it also extends to healthcare professionals, with many reporting fear and uncertainty as to how to best support grieving families and children. This is true whether a child has been diagnosed with a life-limiting illness, or the parent of a child has been diagnosed. Understandably, if the psychosocial needs of families, specifically children and youth remains unaddressed, it only serves to create additional distress for parents and caregivers.

As a Palliative Social Worker I recognize the importance of creating safe spaces and time to have these conversations - to support families in telling their stories, celebrating their connections, and should they so choose, to openly and collectively share their grief. A specific legacy project created opportunities for families to do just that - to hold on, while letting go. I have completed this project with many families facing a life-limiting disease - following diagnosis, throughout the illness, at end-of-life and following the death of a loved one. This can be completed with children of all ages and regardless of the make up of the family - large or small, we meet together and explore their understanding of the diagnosis, the impact of the illness while also celebrating and honouring connections.  That Project? While the results have been profound, the activity is, quite simply, creating a “Hug”. 

To be clear, this is not a professional boundary violation, but in fact, a creative legacy project that can be done by anyone, anywhere, at any time. In obtaining consent from parents and caregivers, I explain that this is an opportunity for the family to collectively talk about the illness, share stories and experiences, communicate concerns, dispel fears, foster support and enact plans. I introduce this activity as a symbol of their unending love – and the Hug can be taken anywhere - to chemo daycare, during an admission to hospital or hospice, or even once someone has died – this “hug” is also something that can be buried or cremated and remain with a loved one forever…

I assure you this experience is more than a creative activity - it is an intimate and collaborative experience for the family to create a lasting memory. While each experience is unique and the degree to which some “patients” may be able participate varies, in each situation, the family gently accommodates their loved one.  What remains universal are the shared laughs, tears and a multitude of stories - reminders of shared experiences and memories of their lives together.

But perhaps I should explain… I feel it is important to outline the essential elements required for this intervention… Specifically, informed consent from the family, clean bed sheets, colourful markers, scissors and glitter. It is simply a matter of laying a sheet on the ground, then a family member lays down on the sheet while another family member traces their outstretched arms and outstretched fingers. After sitting up, lines are drawn to connect the tracings of each arm and then cut along the lines. Although tantamount to making a scarf – it is, more importantly the outstretched arms of their loved one, it is a personalized “Hug”. The child, or partner, sibling, parent or friend then adorns their hug with messages and images and reminders of the shared connection with their loved one - in essence, the “Hug” becomes a tangible expression of their love. 

While I involved partners, children, siblings, cousins and friends in this activity long ago I wondered, what if their loved one (or the “patient”, to be clear) also wanted to reciprocate?  I began asking patients about this and the suggestion of leaving this touching legacy was always met with resounding approval.  While this always requires patient consent and discussion throughout, I have completed this activity with people who were ambulatory as well as people who were bed-bound. While collectively engaging the individual and family, for those who are bed-bound, we carefully slide a folded sheet behind the back of their loved-one. Throughout the activity, the family shares stories and memories, while tenderly helping to hold and trace the outstretched arms and fingers on each hand - every action and movement becomes an incredibly intimate experience. In the case of pathological fracture, we have used the singular tracing of one arm to make a mirror image - completing the hug.  Taking that singular hug and laying sheets over top, additional copies are then traced for each family member. This not only engages entire families at the bedside, but also creates a lasting legacy for the surviving family. We often discuss sewing material from favourite blankets, shirts or sweaters on the reverse to preserve a tangible and personal connection.

I have completed this activity when families speak a language different from my own. Despite only being able to communicate through an Interpreter, the conversation remains seamless throughout as we create a beautiful and moving tribute for their family while they collectively support each other in their shared love and grief. While many young couples anticipate milestones like a wedding or the birth of a child, I have also facilitated this project at the bedside of the dying parent together with their young adult children, creating a space to share their hopes and stories while honouring their legacy. This supportive intervention has also bridged great distances, when families were thousands of miles apart. After completing the activity with the patient and family at the bedside, I encourage them to share the idea with extended family and friends across the country and in one specific case, family members of all ages from across the country made Hugs and sent them by courier to the bedside of their dying loved one. Their many colourful “Hugs” surrounded her when she died, each and every one told a story and was on display around her room as a meaningful and tangible connection. Much to the comfort of the family, each and every “Hug” was later buried with her. I have also completed this project with children following the death of a parent, it is especially important for those who were not informed about the illness or were unaware that death was expected. It is so essential to create a space for children to grieve alongside their families to share their thoughts, shed tears, and express the range of their feelings, including grief. We talk about what it feels like to receive hug from someone you love and the opportunity to create a lasting memento to leave with their parent as an expression of their unending connection. Although a parent - or any loved one might die before families and friends have an opportunity to say goodbye, we can still create opportunities for families to collectively share their love and express their sorrow while honouring the legacy of their loved one.  

I believe as Health Care Professionals, we have an obligation to provide empathic person and family-centred care. From time of diagnosis we have an opportunity to facilitate honest communication, and in turn, promote adaptive coping strategies for those facing a life-limiting illness. In doing so, we can provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life, and into bereavement. I feel extraordinarily privileged that families allow me into their lives - to share their stories, their love and their grief. However brief our time may be together, I hold that time as sacred and do all I can to create a safe-space to foster these connections while honouring the legacy of those living and dying.

Surviving #Cancer Without the Positive Thinking. Losing Yourself, Seeing the Beauty and the Love @embeedub

"My husband and I were always transparent with the kids. They saw me cry; they saw me get scared. We used words like died rather than passed away. Now I see the kids as these amazing, compassionate, clear-eyed people who know how to comfort others and who have made space in their life for death. That is so unusual in our culture. I want my kids to have a relationship with the fluidity of life—with the fact that sometimes people get sick and sometimes bad things happen, and to know that within that there is also grace, there’s also beauty, there’s also comfort. Because if you go down into the depths, there is treasure there. Cancer still sucks, but there’s also profound connection. It’s the privilege of allowing yourself to participate in the full experience of humanity, which includes grief and sickness and death. If you don’t look at [those things], you’re not living...

There’s this assumption that because you got better, you did it courageously. But that’s not my story. I didn’t “warrior” my way into getting better. It was not my achievement; it was science’s. Whenever I hear someone say “I beat cancer,” it just feels so disrespectful to others, such as my friend Debbie. It divides us into winners and losers. I know it’s not deliberate. We want to make meaning. We want to make sense of it. But you see how random [survival] is. I have known people who were healthier than me and younger than me who tried, I think, harder than I did to fight their cancer but who didn’t live…

The story is about losing something—yourself, people you loved, what you thought you knew about the world—yet still being whole. Butterflies are all about transformation. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. And I definitely see the love."