" Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without."
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.
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
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.)
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
“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.
"There is no way to escape losing a sense of who you once were. And after a year (or two), you wake up from this transformation and realize that you were not actually dying; you just felt like you were. And then you must make a choice. One option: You can give into the horror of it all and retire to bed. No one would blame you; it is a tempting alternative that lurks at the back of my brain from time to time even now. The other option is that you take the pain and harness it to do things you could not imagine ever possessing the strength to accomplish. Being around children like my daughter will teach you the very meaning of life."
“Spoiler alert: we are all going to die
One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.
According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?
For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…
As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer…
The beginning of the end
…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.
As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…
We fell silent and the first song began…
A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.
We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.
No one danced.
When the song ended there was silence.
Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.
We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.
The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”
“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”
She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone…
Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”
“Camp Erin Hamilton is an annual three-day camp experience offered at no charge and facilitated by professional staff and trained volunteers of the Dr. Bob Kemp Hospice and Bereaved Families of Ontario - Hamilton/ Burlington. The camp is for children ages 6 to 17 who have experienced the death of someone close to them. Camp Erin Hamilton combines a traditional, high-energy, fun camp with grief support and education.”
“I was spinning, untethered from the person I felt I had once been. A marathon runner, a devoted mom and wife, an independent woman who had never particularly liked asking for help. I was consumed by my sadness and confusion, by my anxieties about what was to come.
And then I discovered other people who were like me. Young moms and dads, people in their 20s who never had a chance to start a family, all of them living with ALS. I found them by writing about my experience, by joining a group on Facebook, and by becoming heavily involved with several nonprofit organizations that raise money for ALS research. My people, it turned out, were not the ones in the senior home who had lived long lives and had much to show for it. My people were the ones who were fighting for their lives, fighting for more time with their children, fighting a disease that we’d been told would certainly kill us–and soon”.
"Wayne Earl reveals the power of living and loving life by sharing the wisdom of his daughter, Esther Earl, who lost her battle with cancer just before her 16th birthday. Esther's courage, positive spirit and hope for the future transformed all who knew her. She showed the world what it meant to live life before death (via her well known vlogs and blogs) and that love is the engine of life. Esther Earl shared her spark of possibility with great generosity and was the inspiration for author John Green's #1 New York Times bestseller, The Fault In our Stars.
Wayne Earl recently authored the compelling life story of his daughter, Esther Grace, who succumbed to cancer shortly before her 16th birthday. Before she died, a deepening friendship with her favorite author, John Green, greatly encouraged her. The friendship also inspired Mr. Green, most notably in his writing of the world- renowned novel, The Fault in Our Stars, which he dedicated to Esther. The Earl Family founded the non-profit organization, This Star Won't Go Out, to help ease the financial burdens of families caring for children with cancer."
“In her New Orleans neighborhood, artist and TED Fellow Candy Chang turned an abandoned house into a giant chalkboard asking a fill-in-the-blank question: ‘Before I die I want to ___.’ Her neighbors' answers — surprising, poignant, funny — became an unexpected mirror for the community. (What's your answer?)”
“It’s not a question of getting over it or healing. No; it’s a question of learning to live with this transformation. For the loss is transformative, in good ways and bad, a tangle of change that cannot be threaded into the usual narrative spools. It is too central for that. It’s not an emergence from the cocoon, but a tree growing around an obstruction.”
"One can only truly understand and appreciate life when faced with one’s own mortality. Nobody wants to talk about death, but it is one of the only things that is certain in life, so an awareness of this finitude allowed my family to take advantage of the time we had left together. “Cancer Family, Ongoing” is the story of family, looking at the experiences of two parents who were in parallel treatment for stage four cancer, side by side. The project looks at love and life in the face of death. It honors my parents’ memory by focusing on their strength and love, both individually and together, and shares the story of their final chapters, which came to a close just 364 days apart from one another."
"We believe that we are meant to come alive. This doesn’t mean we’ll be without pain. This means that we’ll face the pain, looking it in the eye, feeling it, acknowledging it, never faking it, but embracing life for what it is, a coexistence of the deepest sorrows and the deepest joys. We want to be alive to feel both, because we know that if we hide from the pain, we often also hide from true, deep joy, from freedom, from love and life.
We believe that we come alive as we mend, but we also come alive when we reach up and reach out.
We want to dig down deep and muster the grit within us, reach out our hands, and pull one another to the light, because we don’t believe that we’re meant to always live in the darkness."
"It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.
And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, 'I love you, too.' They are worth it all.
Take it from me.
Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more."
"Months later, I began writing a book about writers’ final days. Talking to my subjects’ families and friends, I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to…
Part of the problem is that some silences are too wide to narrate. Words, even if the right ones miraculously presented themselves, would not be enough. The confession and forgiveness we want to fill the room do not spring up more naturally in extremis, under duress. It may be the last chance for the dying person to clarify, but clarity doesn’t necessarily come. In this way, death is a lot like life".
When he returned from the hospital to find hospice nurses awaiting him at his home, Eva says, he turned to her and said, "I think they think I'm gonna die."
And while he continued to get weaker as he approached the end of his life, Eva says she and her father had not spoken in depth about the prospect of his dying — until the conversation she recorded for StoryCorps.
"Do you think you're dying?" she asked him.
"Everybody dies," he replied.
"Are you afraid?"
"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"
She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.