Early Intervention

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

Almost all Canadians would benefit from palliative care. Only one in seven can actually access it at end-of-life

“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.

Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.

Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.

That’s the failure point – and that’s what we need to fix.

There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.

Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.

But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.

All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.

The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail

The Need for Access to Timely Support and Education about Palliative Care

As we all encounter serious illnesses, uncertainty, grief, death and bereavement, there is a remarkable opportunity to create compassionate care for individuals and families of all ages, from time of diagnosis, into remission, at end of life and into bereavement.

It is so essential to demystify the incredible breadth and interprofessional scope of a Palliative approach to care in the education of all health science students and healthcare professionals.

It was a wonderful honour to speak with Death By Design Podcast - Kimberly C. Paul about the future of healthcare. As death is not elective, and illness and dying do not discriminate, we all encounter life-limiting illness, dying and grief. So... let's talk about it.

This episode is available via: http://www.deathbydesign.com/podcast/season-2-episode-10-c-elizabeth-dougherty/

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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

Cancer Mythbusters: Is Palliative Care Only for End-of-Life Patients?

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"Palliative Care is an often misunderstood specialty, focused on providing support and pain management strategies to cancer patients throughout all stages of their illness. This approach, which can be blended into curative cancer therapy, focuses on care for the whole person: mind, body, and spirit."

Source: Cancer Mythbusters - Is Palliative Care Only for End-of-Life Patients?

Calling for a Palliative Care Culture

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Palliative Care is the future of medicine "It has social and political dimensions that spring from its grounding in a commitment to relieve total pain, which includes spiritual pain."

Source: Calling for a Palliative Care Culture

Palliative Care: the Pearl of Great Price

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"Palliative care is the stance of being comfortable with the unknown, a stance that leads to the development of confidence, resilience, and empowerment in patients and families receiving the best care... we are all vulnerable, all subject to suffering, old age, and death..."

Source: Palliative Care: the Pearl of Great Price

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

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.”

An Innovative Approach to Family-Centred Legacy Projects

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

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

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

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

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

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

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

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

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

The End Game: Conversations about Life and Death #hpm #ACP

Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death. 

For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about? 

We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.

For more details about our free event or to register please follow this link to EventBrite

Storytelling in Grief: Honouring Connections while Celebrating Legacies #hpm

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

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

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

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

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

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

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

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

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

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

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..."

#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”.

Repeat After Me: 'Hospice Means More Care, Not Less.'

"If you or anyone you know has advanced illness that isn't meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors' visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits".

I'm Trying to Die Here. ~ Rev. Dr. Carla Cheatham

"Our goal is to maximize quality of life for whatever quantity naturally remains for everyone involved. Knowing that we are the interlopers, we strive to adapt to the personality and culture of the person receiving hospice as well as that of their entire family. We pay attention. We listen to stories. We pick up queues and share them with our team members so we can all work to provide as little intrusion as possible as guests in the home (whether “home” is one’s own or a room in a facility)".

In #Palliative #Care, #Comfort is the Top Priority. #HPM

"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'

To the contrary, palliative care can help patients live fully, regardless of their prognoses."

Misconceptions of palliative care may make people reluctant to avail themselves of help earlier. #HPM

"Lead researcher Dr. Camilla Zimmermann, head of the palliative care program at Princess Margaret Hospital, says there is a misconception about what palliative care is.

Many people believe it is the type of care hospitals offer when they have exhausted all medical options. They think it means that the oncology teams, having run out of cancer fighting tools, then hand off patients to people specialized in helping ease the final days of a dying person's life.

As a result, Zimmermann says, some people are reluctant to avail themselves of the help palliative care teams offer earlier in their cancer journey.

She says palliative care teams — some of which have started to call the service they offer supportive care — collaborate with oncology teams to try to help patients through difficult treatments and the progression of their illness. For the palliative care team, that can mean providing access to home care and to assessments of the needs of the patient and his or her family, among other things.

The aims of both teams are the same, Zimmermann says — prolonging life and improving quality of life".

Inconsistent and inadequate patchwork of palliative care across #Canada needs to be priority. #HPM

"Federal and provincial governments need to guarantee access to palliative care in legislation, the Canadian Cancer Society said Tuesday as it released a report on the state of care across the country.

In its findings, the society said critically ill patients are falling through the cracks of the health care system and improvements are needed to address the patchwork of service that exists.

In the absence of national standards, individual jurisdictions are left to develop their own policies, programs and guidelines that result in inconsistent and inadequate palliative care, the report said".

What Would You Write If You Knew You Were Dying?

This talk was given at a local TEDx event, produced independently of the TED Conferences. Writing for the future. Recording conversations Rachel has a passion for honest conversations, and recognises the precious and precarious nature of life. She supports families when an adult develops cancer and helps those at the end of life to tell their story.

"When life runs out of tomorrow's, what you realize you've got is today" ~ Rachel L. Smith

Before the tomorrow's run out, use this opportunity today to think about what you will you say to your loved ones... And then say it...