Family Engagement

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."

I can’t save my daughter from a terminal illness. But we can help save other children from the same fate.

"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."

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

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

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

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“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 end

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 Sky Isn’t Falling @Speed4Sarah in @brainchildmag on her #diagnosis of #ALS.

“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”.

The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm

"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer". 

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."

#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm

In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.

A #Daughter Pays Homage to Her #Parents With an Intimate Look at #Love and #Loss. @nancyborowick #hpm

"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."

Are #Families Ready For The #Death And #Dying #Conversation? #ACP #InformedChoice

"The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?"

The Meaning of #Life: #Palliative #Care Makes Every Moment Count. #hpm

"For someone facing a serious, chronic illness, the answers to that question take on a sharp focus. A patient with heart disease might want enough energy to walk around the neighborhood. A cancer survivor may want to feel like herself again after rounds of chemotherapy. Others might have a goal of seeing their children get married—or perhaps to get married themselves.

Helping patients get the most out of life is the aim of palliative care—which could surprise some people who associate the specialty with hospice, or care delivered in the final days and hours. Palliative care services do indeed benefit people nearing the end of their journey, but the field has become much broader over time. Many patients with a life-threatening disease now start receiving palliative care early—sometimes soon after diagnosis..."

Just Days Before Her #Father #Died, She Told Him What He Meant To Her. @NPR @StoryCorps

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?"

"No."

"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"

"My kids."

"Your kids?"

"My family."

She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.

‘Everything We Say and Do’: Soliciting #Goals from Our #Patients and Their #Families

“Everything We Say and Do” is an informational series developed by SHM’s Patient Experience Committee to provide readers with thoughtful and actionable communication tactics that have great potential to positively impact patients’ experience of care. Each article will focus on how the contributor applies one or more of the 'key communication' tactics in practice to maintain provider accountability for “Everything we say and do that affects our patients’ thoughts, feelings and well-being.”

#Dying Better, Even If It Means Sooner. Delaying #death with excessive, expensive end-of-life care often does more harm than good.

"Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones".

Why #Death Is Good Dinner #Conversation. #ACP @deathoverdinner @convoproject

"As I write this, I’m five years post-diagnosis and officially in “survivorship” care – I now go in for follow-up only once a year. And I have to admit, with cancer further and further in the rearview mirror, it’s easy to get back into denial mode when it comes to death – “I’m going to live forever!”

But we need to acknowledge death, talk about it, whether we’re a terminal patient, a just-diagnosed Stage I patient, or someone entering “survivorship.”

Recently, there have been the beginnings of a movement to help us all get real and have “the talk” about death.

So let’s get talking. Even if it’s scary and awkward, having this talk will greatly increase the chances that your end-of-life wishes are honored.

Death Over Dinner and The Conversation Project are organizing a week-long National Dinner Party to Dine and Discuss Death April 16 through 22".

7 Fun Ways To Teach Your #Kids #Mindfulness

"If you ever want to be inspired and also have a giggle, ask a group of kids what they think “mindfulness” is. “Relaxing out of our daily troubles and stress,” “A way to stay yourself when you’re going through something troubling” and “It’s like getting off of one railroad track and getting onto another one” were some of my favorite answers from the recent class meeting. Kids can really be fountains of spiritual wisdom!

When I told them the dictionary’s definition (“a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique"), the kids weren’t entirely sure what I was talking about. And so we did some exercises to test it out. Feel free to try these at home!"

#Health Sentinel: Lack of #knowledge about #palliative care limiting its benefits to #patients, #hospitals. #hpm

"When Gerald’s physicians discussed options and next steps, palliative care was among them. Rozanne, a retired teacher, was familiar with hospice but unaware of palliative care as a specialized service.

'I didn’t have a clue,' she said, but added that through those services, 'our every need was met.'

Multiple studies show that, compared to awareness of hospice, “There’s significantly less familiarity with palliative care,” said Dr. Lyle Fettig, director of Indiana University School of Medicine’s Hospice and Palliative Medicine Fellowship program centered in Indianapolis…

Palliative care, according to the New York-based Center to Advance Palliative Care, is appropriate for any age individual and at any stage of a serious illness, whether that illness is cancer or a chronic condition, such as heart or lung disease. The goal is to improve quality of life for both patient and family through a holistic, interdisciplinary team approach”.

The importance of #honest #communication: Talking with #children about #death. #hpm

"Drawing from over 30 years of stories and wisdom from grieving children, teens, and adults, the Dear Dougy Podcast is opening up the conversation about dying, death, and bereavement. As humans, we all experience loss during our lives, but often find ourselves lost and unsure when it comes to navigating the grief that follows. Whether you’re grieving a death, or wanting to support someone who is, the Dear Dougy Podcast can help explore your questions about grief".

Embracing Life While In Palliative Care

Patients staff and students talk about their experience of palliative care in this film that takes away some of the stigma attached to death and dying enabling important conversations to happen at the end of life. The observations contained demonstrate the quality of life that can be attained at the end of a person's life.

"When you come to the end of your life, how do you mark it's last moments?

This short documentary,Embracing Life, aims to take away the stigma attached to death and dying.

Talking to patients in palliative care, the creators of the film enable conversations about how people feel about approaching the end of their life.

'The aim of the project has been to help build the capacity of communities to talk about death and dying, loss and grief, so that those living with a terminal disease can be better supported,' Sam Kelly from Calvary Health Care Bethlehem told The Huffington Post Australia.

The patients interviewed in this film give an incredibly positive perspective on what it's like to face death.

'Once I accepted that death was to come, I've just held everyday and I try to live it to the fullest,' said Tony Steele.