It’s Hospice Palliative Care Week in Canada.
The campaign (May 5th – 11th) this year focuses on #BustingTheMyths about Hospice Palliative Care
This year, the Canadian Hospice Palliative Care Association (CHPCA) designed a “Busting the Myths” campaign as a response to the need to educate Canadians including caregivers, physicians and all healthcare providers, citizens and political leaders around common myths about hospice palliative care.
The #BustingTheMyths campaign aims to empower Canadians through education by identifying and clarifying misperceptions about Hospice Palliative Care in Canada.
Working together to educate one another is a vital step in the pursuit of excellent Hospice PalliativeCare.
Source: CHPCA Canadian Hospice Palliative Care Association
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
“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
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/
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!
Next Burlington Death Cafe is in April in support of Advance Care Planning Day! #talkaboutdeath
"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."
"Yet, amidst the storm, some remarkable health professionals create a circle of calm. They go about their work in an unhurried way, finding time to greet their patients, put them at ease, listening deeply and offering kindness and compassion. They don’t neglect their clinical tasks, indeed they seem to get the work done with quiet efficiency. These inspiring workers go home with satisfaction and joy in their hearts. How is that possible?"
Source: Hearts in Healthcare Practising compassion in an uncompassionate health system
"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
Was honoured to present Across the Continuum: The Need for Innovative Approaches to Person and Family-Centred Care, a H.I.T (Healthcare, Innovation, Technology) Talk at the Hospice Palliative Care Ontario 2017 Annual Conference "Accessing Compassionate Hospice Palliative Care Across the Continuum" (excerpt below).
From time of diagnosis so much is asked of those facing a life-limiting illness… Ultimately, they’re expected to “hold on” while also having to “let go”. How then can we consider innovative approaches to person and family-centred care across the continuum, at a time when healthcare providers are required to do more, with less?
I am honoured to say that I am a Social Worker, and there’s a phrase that rings true for me in the work that I do as I often step outside of my comfort zone. The idea of “leaning into the discomfort”. I’d like to reflect on why it’s important for every healthcare provider to consider the way we approach our work.
Working within a frenetic yet extraordinary healthcare system, we face time-constraints, the demand for evidence-based competencies, the expectation of metrics and outcome measures, people often referred to by a medical record number or identified by a disease… quite often, healthcare feels rushed and impersonal… As a result, healthcare providers may not fully engage because of increasing practice demands and time constraints, they may avoid certain experiences where they don’t feel competent or hesitate to go those places when faced with uncertainty…
In fact, much like life itself… acknowledging and meeting the challenges in the midst of uncertainty and chaos are really an integral part of our work. How then can we engage and enter those spaces when we feel that we don’t have time, when we don’t know the answers, or when we’re unsure of what we may find?
While the idea of creating and implementing innovations in practice may sound weighty, the definition of innovation is actually quite simple. Innovation is the introduction of something new… a new idea, method or device. That’s it. You don’t necessarily need to write a grant, or consider retraining, or apply to the research ethics board (and while that may be part of your innovation), introducing something new doesn’t have to be onerous, it can actually be something quite simple.
Hospice Palliative Care has always been ahead of the curve… in recognizing and valuing person and family-centred care, in acknowledging "total pain", in taking holistic approaches to supporting quality of life, to recognizing and integrating interprofessional collaboration. Innovations in Hospice Palliative Care remain essential today, and perhaps more so now than ever before.
At present, we’re faced with tremendous opportunity. With the quality of living and dying on our social and political landscape, with Bill C-277 (An Act providing for the development of a framework on Palliative Care in Canada) passed by the House of Commons, with the provincial and federal governments acknowledging the need for increased funding in Hospice Palliative Care… we’re on the precipice of change. How then can we be agents of change, and consider innovative approaches to person and family-centred care across the continuum - from time of diagnosis, throughout the trajectory of an illness, at end of life and into bereavement?
We face the reality that many people, including many healthcare providers, assume that Hospice Palliative Care is nothing more than a euphemism for end-of-life care. That presents us with an opportunity… to continue to advocate and educate about the remarkable scope and breadth of Hospice Palliative Care across the continuum. But in doing so, it’s also important to consider, when does dying begin, and how can we support people to live well during that process?
Does dying begin the moment we’re born? Or when a fatal condition begins? Is it when that condition is recognized by a physician, or it when nothing more can be done to reverse the condition or to preserve life? As we know, the answer to that question varies from one person to the next…
While many focus on the quality of dying, or on death as a singular event, isn’t the whole end-of-life experience informed by the people and the events leading up to that death?
It’s these processes that take place in the days, weeks, months and even years before the death that are of paramount importance and contribute to overall quality of life - and that’s where we, as a community of care providers, can have the greatest impact.
Healthcare providers are often inhibited by their anxieties about saying or doing the wrong thing. This is true for any clinician, beyond our formal training and education, we continually face new scenarios, challenging experiences and uncertainty… We need to step outside of our comfort zone, and with humility… explore person and family-centred innovative approaches to care in an effort to promote healing.
It’s a profoundly intimate experience when we are allowed to share that space with someone facing dying, death, grief and loss… that compassionate connection can transcend so many barriers, and sometimes, however momentarily, sometimes… it can even transcend suffering. That connection can be extraordinary.
I believe as Health Care providers in Hospice Palliative Care, we can continue to lean into our discomfort and remain open to uncertainty and to wonder. I believe, through our humility and vulnerability, we can create compassionate and innovative approaches to person and family-centred care, and in doing so, provide invaluable opportunities for people to connect, and collectively process experiences across the continuum - from time of diagnosis, through to end-of-life and into bereavement.
As Dr. Rachel Remen explains, "the most important questions don't seem to have ready answers. But the questions themselves have a healing power when they are shared. An answer is an invitation to stop thinking about something, to stop wondering. Life has no such stopping places; life is a process whose every event is connected to the moment that just went by. An unanswered question is a fine traveling companion. It sharpens your eye for the road".
We’ll always face challenges and uncertainty in our work, but we need to be invested in innovative approaches to person and family-centred care, because as Dr. B.J. Miller says "Quality of Life isn't a Consolation Prize".
“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.”
"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”.
"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".
"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)".
"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."
"The standards say families should be educated early on about palliative care and its role in helping to “reduce suffering throughout the disease process.” And they say children with cancer should receive “developmentally appropriate” information to prepare them for the treatments and procedures they will undergo".
"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".
"As I have become more involved with this work, I have wondered whether the CEO of a large health plan is the right person to talk about end-of-life care. But I only have to remember how important this issue was to my brother and my parents to realize that — in this case at least — my personal experience should inform my professional actions. Everyone, regardless of economic, cultural, racial, or geographic differences, must have their choices and values heard and respected. Everyone deserves the chance to live the best life possible, to the very end".
"Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness is a two part resource that will help support people with mental illness, their families and carers, and health professionals with the complex issues which might arise around Advance Care Planning for End of Life".
"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.
The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.
For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".