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Storytelling in Grief: Honouring Connections while Celebrating Legacies

Providing invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis to end-of-life

Photo of C. Elizabeth Dougherty
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“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.

What is a provocation or insight that might inspire others during this challenge?

I believe 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 opportunities for storytelling and celebrating cherished memories and connections. In doing so, we can provide people with invaluable opportunities to connect.

Tell us about your work experience:

I am hospice palliative care psychosocial clinician and educator.


Join the conversation:

Photo of Bob

Wow. good work, C. Elizabeth.  I like the idea of that hug. Well imagined !

Photo of C. Elizabeth

Thank you very much Uncle Bob! xo 

Photo of Jason

This is fantastic I love this idea 

Photo of C. Elizabeth

Thank you Jason

Photo of Leslie Edwards

This is such a beautiful way to celebrate life and death!

Photo of C. Elizabeth

Thank you so much Leslie.

Photo of Vanessa

So beautiful!
They are lucky to have you

Photo of C. Elizabeth

Thank you very much Vanessa.

Photo of Jeff

Well done!  Very cool idea...

Photo of C. Elizabeth

Thank you Jeff.

Photo of Lisa

What an extraordinary way to open not only one's heart, but communication with those we love. Your simple, but not-to-be-underestimated Hug is truly awesome. 

Photo of C. Elizabeth

Thank you Lisa - much appreciated.

Photo of Lilly

Interesting Article and I love the idea of the "Hug". Well done Elizabeth

Photo of C. Elizabeth

Thank you very much Lilly.

Photo of Lynn

Love your passion, compassion and commitment to helping those dealing with a truly difficult time.

Photo of C. Elizabeth

Thank you kindly Lynn.

Photo of Iva

A beautiful concept...everyone needs a hug

Photo of C. Elizabeth

Indeed. Agreed Iva! Thank you.

Photo of Kelley

Having gone through cancer with my mum back in 1998 and now with my father this year, I have a great understanding of what it means to have a listening ear, open and honest communication and a simple hug that speaks a thousand words! I love this concept and the raw purity and impactful message! Amazing work Elizabeth!!

Photo of C. Elizabeth

Thank you kindly for sharing your experience Kelley - indeed capturing these precious moments with our families is so important - proactively in the absence of illness is ideal, but as mentioned, support during difficult times is an extraordinary experience.

Photo of Chelsea Gabel

This is a beautifully written article! The "hug" concept that you introduce is powerful and would resonate well not only with families but with the students and faculty in my department. There is a lot to be learned from this. Congratulations on all your hard work - we need insight like this in my department. 

Photo of C. Elizabeth

Thank you kindly Chelsea.
Agreed, the need to normalize dying and death is so important in education - from Pre-kindergarden to Post-grad - it is essential for us to create opportunities to educate, normalize and support each other regarding dying, death and loss as it affects us all.

Photo of Lori

Well done Elizabeth. You bring a warm  and empathetic outlook on such an important and difficult stage in life. Keep going you are doing wonderful things. 

Photo of C. Elizabeth

Thank you kindly Lori.

Photo of Jennifer

Wow.. What a great idea.  I think it's so important to embrace this special time in families lives. Your thoughts and ideas really  do resonate with so many people who are going through or have experienced this harsh reality. Well written Elizabeth. 

Photo of C. Elizabeth

Thank you very much for your feedback Jennifer. Much appreciated indeed!

Photo of tony

Such a simple idea that reminds us the importance of mindfulness and the need to focus our awareness and our thoughts to the present while acknowledging and accepting our feelings.  Well demonstrated, Elizabeth.

Photo of C. Elizabeth

Thank you Tony.

Photo of Bettina

Ken Rosenfeld posted an Idea to create a new, more humane and individual body bag, one that honors the deceased.  Perhaps the "Hug" could be used to drape over a body bag so that this personal and collaborative expression can be part of the process of moving the body, transitioning, as family says good bye?!comments-section

Photo of C. Elizabeth

Hi Bettina,
Indeed, after the death of a loved one, families routinely wrap the "Hugs" around them - much as they would wrap their arms around them in an embrace. Often the funeral home will pick up the body of their loved one directly from the Palliative Care Unit instead of the morgue and the Hugs are wrapped and placed directly on the body. Families have also reported that the Hugs are later wrapped around their loved one while inside the casket at the funeral home and also cremated or buried with them - forever maintaining that connection.

Photo of Sasha

Thank you for this very poignant piece Elizabeth.  As someone who also works in healthcare with a vulnerable population, I really appreciate your perpective in promoting the "opportunities for celebrating cherished memories and connections" when working with families with a baby that has a life-limiting illness.  As a caregiver, your perspective helps me with a starting point in opening the lines of communication. Thank you!

Photo of C. Elizabeth

Thank you for sharing Sasha and for your work with vulnerable populations - it so important for us as caregivers to foster these opportunities.

Photo of Justin

I love the Hug idea. Elegant in its simplicity but I can see what a tangible and lasting memory this could create. 

Photo of C. Elizabeth

Thank you Justin - tangible and lasting memories indeed.  
Have heard from many parents how their children held on to these "Hugs" during pivotal and celebrated moments. 

Photo of Kevin

Having experienced these events with family members and friends. Knowing that someone like yourself Elizabeth is there to guide families through this transition is immensely comforting. This is well thought out and well written, giving families and friends a guiding hand through. Well done Elizabeth. 

Photo of C. Elizabeth

Thank you for your thoughts and for sharing your experience Kevin.

Photo of Breya

Elizabeth. Your words are powerful, and the idea of the 'hug' is simply beautiful.  How often have we lost someone and said "if I could only hug them one more time."  This is an incredible idea, one that will allow people to literally embrace end-of-life.  Thank you for this. 

Photo of C. Elizabeth

Thank you Breya. It is indeed an exceptional embrace.

Photo of Nadia

I so enjoyed reading this Elizabeth.  Your "hug" idea is so touching.  It is amazing how much of an impact this would have, especially where kids are involved.  I can only imagine how many lives you have touched.

Photo of C. Elizabeth

Thank you kindly Nadia.

Photo of Rita

Thank you for sharing your work and creative idea, more people need to hear about this. Thanks for facilitating important and necessary discussions Elizabeth.

Photo of C. Elizabeth

Thank you Rita.

Photo of Derek

Elizabeth, speaking of meeting one's calling, I have no doubt that your work and the impact that you have on others, during an especially difficult and emotional time, is invaluable and very much appreciated. Well done!  

Photo of C. Elizabeth

Thank you very much Derek.

Photo of Dwayne

What an amazing experience this must be for everyone involved! 

Photo of C. Elizabeth

It is indeed Dwayne. Thank you.

Photo of Nigel

Wonderfully written and such a powerful message. Families in need are fortunate to have you in their lives. 

Photo of C. Elizabeth

Thank you for your kind words Nigel.

Photo of Helen Carrier

This is a very heartwarming and endearing form of communication at a critical time in one's life - with death being a part of life. The opportunity to share this "Hug" experience with family members creates a memorable expression of love for all who participate.

Photo of C. Elizabeth

Thank you Helen - it absolutely does.

Photo of Debbie

Too often patients and their families suffer in silence as there are often times no words or not the right ones. This is a beautiful way of breaking that silence to allow amazing connection, healing and peace.
Families suffering are very fortunate to have you.  

Photo of C. Elizabeth

Thank you Debbie. I appreciate your comment but I feel fortunate that people share this finite time with me.

Photo of Grace

Beautifully written, Elizabeth!  I've always loved the concept of the Hug. It's such a wonderful way to open up conversations and stories and to keep loved ones close even if they can't physically be there. 

Photo of C. Elizabeth

Indeed Grace. Thank you for your feedback.

Photo of Christy

Beautiful idea. Very powerful

Photo of C. Elizabeth

Thank you Christy.

Photo of SoulShaker

Truly amazing writing and quite inspiring concept Elizabeth! The thought of dying, and the acceptance that you will no longer be here can be overwhelming for people, and just talking about it openly can be very comforting.  

Photo of C. Elizabeth

Thank you SoulShaker for appreciating the concept and the opportunity to connect.

Photo of Carla

Well written Elizabeth! You are so inspiring and your passion for what you do is amazing.  I love this idea and so wish that I could've done it with my mom before she passed away! Keep up the great work!

Photo of C. Elizabeth

Thank you Carla.

Photo of Allan

What a profound piece if writing . The author really drives a human connection with the reader while painting a vivid portrait of the experience we will all unfortunately have one day with someone close to us.  The "hug" concept must be an extraordinary healing  component for all who engage  in it. 

Photo of C. Elizabeth

Thank you very much Alan.

Photo of Bonnie

I have had the extreme pleasure of working with Elizabeth on a Palliative Care Unit and saw first "hand" how therapeutic the Hugs worked. They provided an atmosphere that fostered: healing, calmness and opened the door for those necessary but difficult discussions. Quite often I witnessed a transformation amongst family and friends as they went from being fearful and feeling helpless to becoming more involved and open.
Hugs are needed from the moment we are born into this world until  minute we transition to the next.

Photo of C. Elizabeth

Thank you kindly Bonnie.

And as we know firsthand, Palliative Care is interprofessional poetry-in-motion

Photo of Carly

What a beautifully written piece about a beautiful legacy project for families. So many people have found peace and meaning with this activity and now with your writing about it here, so many more will benefit. Write on!

Photo of C. Elizabeth

Thank you Carly.

Photo of Brendan

Elizabeth this is a very moving piece, that struck right at home. I am wondering if you have ever thought of trying this "hug" project with palliative seniors. I think you have created something special that families can use during this tragic time in one's life! Well done and keep up the good work!

Photo of C. Elizabeth

Thank you kindly Brendan.

Indeed - I have used this approach to care with families of all ages and compositions. Some incredibly meaningful experiences included multi-generational members of families, with the adult children and grandchildren lovingly and tenderly creating a "Hug" with their bed-bound parent/grandparent and then surrounding the bed and laying on the floor while they individually and collectively traced and created "Hugs" reflecting on stories and celebrating their connection. The extraordinary love, grace, humour and compassion in these moments are indescribable...