Family Engagement

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

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

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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…

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

Elizabeth Dougherty - 13th Annual Innovations in Palliative Care

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