Honoured to offer "Exploring the Language of Loss: Caring, Supporting and Empowering" as the Opening Keynote for the PalCare Network 2018 Fall Symposium.
This workshop will explore the language of loss while also examining tools and resources to support individuals, families, and ourselves.
1. Examine the impact of loss in person and family-centred care
2. Encourage the caregiver to engage in the dialogue of loss
3. Explore self-care as an essential element of professional practice
For more information about the PalCare 2018 Fall Symposium, or to register, please visit: http://www.palcarenetwork.org/
Excited to present "From Diagnosis to Bereavement: Engaging the Public Across the Continuum" at the 2018 Partners in Care: Central West Palliative Care Network Annual Conference.
1. Consider systems challenges impacting care of people facing dying and loss;
2. Examine psychosocial implications for individuals, families and healthcare providers facing illness, grief and bereavement;
3. Explore compassionate community events as essential opportunities to engage the public following a life-limiting diagnosis through to bereavement.
For more information, or to register, please visit: http://cwpcn.ca/en/annual-conference/
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
Honoured to have been on Faculty for the National Learning Institute hosted by the Canadian Hospice Palliative Care Association (CHPCA) in Ottawa (June 14th-16th).
The CHPCA’s Learning Institute brings together healthcare professionals from across the country for an intense learning weekend. The program is directed towards intermediate and advance learning levels and is facilitated by specialist Hospice Palliative Care Clinicians, Educators and Researchers from across Canada, together with international leaders, making a sophisticated caliber of educators and mentors. This is the only event of its kind in Canada.
For information about the event, please visit: http://conference.chpca.net/about/
Am excited to co-facilitate this event with the Division of Palliative Care at McMaster University as we discuss, "What makes life worth living in the face of death?".
Many healthcare students and providers do not feel prepared to encounter dying and death. As part of our 100% Certainty Project. Death: Something to Talk About, this event will feature: the stunning memoir When Breath Becomes Air; will show the brilliant TED Talk from Dr. Lucy Kalanithi; and will conclude the evening with a Death Cafe where we will discuss how to make the most of our finite lives.
Dinner is provided. Registration is required and space is limited. All healthcare disciplines are welcome!
For information, or to register, visit:
Highlighting the need for integrated Person and Family-Centred Care...
"The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease"
Source: Patients feel psycho-social impact of chemo more acutely than physical side effects. MedicalXpress
"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
"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."
Read the full article The New York Times
Starting a Conversation with Your Healthcare Team
Whether you or a loved one have been newly diagnosed with a serious illness, or have been told your disease has progressed, you will have to make decisions about treatment. You may have many thoughts and emotions at this time. This can be a time of uncertainty and it is common to feel worried. It can be helpful to ask your healthcare team questions about what to expect, how to plan and what support and resources are available to you and your family.
It can be helpful to ask your healthcare team questions about your illness so that you can best understand your treatment options. The following is a list of questions that may help you to make informed decisions about your plan of care. Please ask these questions if they are helpful in guiding you and your family, or ask whatever questions are important to you. It can be helpful to bring your list of questions to your medical appointment and record/write down the answers. If you have the support available, you can have someone accompany you to your appointments to listen and help record the details.
Some questions you may ask your Healthcare Team:
• Is the condition short or long-term? Reversible or irreversible?
• Is the Illness curable or incurable?
• What types of treatment are available to treat the illness/condition?
• Where is this treatment offered? Hospital? Clinic? Home?
• What is the goal of treatment (cure, manage pain/symptoms, improve function, extend life)?
• If the goal of treatment is to extend-life, how long does the average person live while receiving this treatment? What about those who do not receive this treatment?
• How often is this treatment successful?
• Does having this illness/condition impact the effectiveness of treatments/
interventions one might receive in an Intensive Care Unit?
• What are the common risks and side effects of this treatment? Are there any possible dangers connected to this treatment?
• Where and how often will I receive this treatment? How long do you expect this treatment to continue?
• Is there a financial cost associated with this treatment?
• When and how will you know if these treatments are working?
• When or why might these treatments stop? If this treatment stops, what are other treatment options?
• How will this treatment impact my life? What are the expected physical, emotional, psychological and practical issues?
• What type of additional support is available to me? What about my family?
• What are the physical, emotional, psychological and practical resources that
can help? How do I/my family access them?
It is important to take time to have conversations about your treatment with your healthcare team. Please ask questions that are important to you. Honest and open communication about your healthcare is so essential.
"What’s often overlooked is that the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe."
“As we acquire new and more technical skills, we begin to devalue what we had before we started: understanding, empathy, imagination. We see patients dressed in hospital gowns and non-skid socks — not jeans and baseball caps — and train our eyes to see asymmetries, rashes and blood vessels, while un-training them to see insecurities, joys and frustrations. As big data, consensus statements and treatment algorithms pervade medicine, small gestures of kindness and spontaneity — the caregiving equivalents of holding open doors and pulling out chairs — fall by the wayside.
But all care is ultimately delivered at the level of an individual. And while we might learn more about a particular patient’s preferences or tolerance for risk while explaining the pros and cons of a specific procedure or test, a more robust, more holistic understanding requires a deeper appreciation of ‘Who is this person I’m speaking with?’
In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing ‘the person behind the patient’.”
"The genre has blossomed as doctors have become more comfortable acknowledging their humanity and vulnerability through prose, said Dr. Paul Gross, the founder and editor in chief of the online journal Pulse, which carries the tagline 'voices from the heart of medicine.'
Doctors deal with so many difficult situations each day, Gross said. “How do you process it? And how do you remain whole as a person?” Writing helps them work through those issues by forcing reflection..."
“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.”
"We’ve all been told we should live each day as if it were our last, but how many of us truly can? Life is a journey. We’re in the middle of it. When we hear the news, we know — for the first time really know — our journey will end. What do we want from our doctors at that moment? What do they want from us? No matter where we sit, we are infinitely far apart and impossibly close. They have given us something no one else on earth has ever given us before, and we are transformed."
"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".
"Jonathan Bartels is a nurse working in emergency care. He says witnessing death over and over again takes a toll on trauma workers — they can become numb or burned out. So the next time we worked on another person who didn't make it, I decided to be bold and stop people from leaving," he says. "I just said, 'Can we stop just for a moment, to recognize this person in the bed? You know, this person before they came in here was alive — they were interacting with family, they were loved by others, they had a life.' "
The team did it. Standing together silently, they stopped — just for a minute.
"When it was done, I said, 'Thank you all, and thank you for the efforts that we did to try and save them.' People walked out of the room, and they thanked me," Bartels says.
What's come to be called The Pause is now being taught as part of the curriculum at the university's nursing school. Emergency medical technician Jack Berner says it helps him handle the toughest cases. ‘It makes it so we can actually view the person as a person, rather than as a patient that we see on an everyday basis,’ he says. ‘You can relate more to the case, [knowing] it's somebody's father or their mother, their sister or their uncle, rather than somebody you just see for five minutes’."