Quality of Life

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

How the fear of dying taught me how to live

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"Live. Put your phone down. Talk to the person in front of you. Hold the door for people. Smile if someone catches your eye. Say thank you. Say please. Give hugs. Compliment people. Compliment yourself. Love yourself. No one will remember what size the pants are you are wearing but they will remember the way you walked in them. So walk softly. Speak boldly. Love gently. Laugh loudly. Call someone if they cross your mind. Allow yourself to be happy for others, and most importantly allow yourself to be happy for yourself, through every stage and step of your life. Be happy. Life doesn't have to be perfect for it to be perfect."

Source: How the fear of dying taught me how to live

Burlington Death Café. In Celebration of World Hospice Palliative Care Day

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In Celebration of World Hospice Palliative Care Day, and in support of the Burlington Compassionate City Charter and the Carpenter Hospice, the Burlington Death Café will be held on October 11th, 2017 from 7-9pm at Emma's Back Porch.

Death Café is an international movement where people, often strangers, gather together to eat, drink and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group, rather than grief support or a counselling session. It is a respectful, public event where people of all communities and belief systems are welcome to have discussions about death.

Interesting conversation is guaranteed!

This is a free public event, but seating is limited. For information, or to register, please visit Eventbrite

For more information about Death Café, please visit http://deathcafe.com/

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

Patients feel psycho-social impact of chemo more acutely than physical side effects

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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

Death: A Part of Life. A 5-Part Mini Series (podcast)

Am honoured to have been a guest panelist on the final instalment of Death: A Part of Life - Part 5: The Grieving Process.

This informative 5-Part radio series with the Dr. Bob Kemp Hospice aired on CHML 900. Each week panelists including caregivers and healthcare professionals convened to open up a conversation about dying, death, grief and loss. The series explores issues such as: coping with the diagnosis of a serious illness; demystifying hospice palliative care; exploring available supports and services; advance care planning; the dying process and grieving which ultimately impacts us all.

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The links to the podcasts of Death: A Part of Life are listed below:

 Death, A Part Of Life - Part 1: Palliative Care

It’s a fact of life that at one point we all will die. But is it all as simple as that? Bill Kelly and the Bob Kemp hospice will be discussing grief, relief and the acceptance of passing away. On today’s show we discuss what happens when you’re told you don’t have much time left, and whether healthcare is asking too much of caregivers, and whether people are prepared for palliative care.

Death, A Part Of Life - Part 2: Changes To Palliative Care.

For our second show, we will discuss what the palliative care system is now, how it works and what changes need to be made. What does one of our local MPPs hear from his constituents about healthcare and in particular, palliative care? How would changes affect patients? Does fear have a hold on how we make our decisions once we’re diagnosed as palliative? An example of this is whether to choose palliative care or medically assisted death.

Death, A Part Of Life - Part 3: Religion and Palliative Care.

We continue our series this week with two topics. The first one will be discussing the experience of death. Everyone treats death in our world differently. But is it strictly a medical experience or is it a spiritual one? In our second half, we will talk about access to palliative care services in various sectors of our society. How do we help the vulnerable and the community obtain access to proper palliative care?

Death: A Part of Life - Part 4: Bucket lists and preparation.

Life should be celebrated at all stages, whether it be infancy, adulthood and as life comes to a close. So how can we make the most out of life? How can those who are in palliative care achieve their “bucket list” dreams before they pass, and how does it apply when it comes to their own personal circumstances? How do we define a “bucket list”? How wise is it to be prepared for eventual health issues? How should we plan for advanced care and how does it affect the family? How do we navigate through the difficult decisions and pain to provide care for loved ones who are palliative?

Death: A Part of Life - Part 5: The grieving process.

The final instalment in our series sees us discussing grief and how this isn’t just an event that happens in life but a process that families have to go through. How do families grieve the loss of a loved one? How can we support one another and how does grief affect children?

Source: Global News. AM 900 CHML

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

Across the Continuum: The Need for Innovative Approaches to Person and Family-Centred 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".

Informed Patient? Don’t Bet On It

"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

Who Will Care for the Caregivers?

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"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.

For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".

How the United States Is Changing End of Life Care @attn

“As people live longer and medicine becomes more advanced, doctors have more ability than ever to hold off death. Yet many people put virtually no thought into whether they actually want their lives extended past a certain point — leading to a raft of unnecessary, unhelpful, and possibly unwanted medical procedures shortly before a person's death.”

Why Your Life Is Not A Journey

"If we thought of life by analogy with a journey, a pilgrimage, which had a serious purpose at the end, and the thing was to get to that end, success or whatever it is, maybe heaven after you’re dead. But we missed the point the whole way along. It was a musical thing and you were supposed to sing or to dance while the music was being played."

Source: Alan Watts & David Lindberg. Why Your Life Is Not A Journey

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.”

Looking Death in the Face

"We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived."

What people talk about before they die

“I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.

They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.”

Why Talking About Death Is the Key to the Longevity Revolution

 

"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."

Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman

 

Why is it so hard to talk about dying? @whenyoudieorg #hpm

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"When heading into the unknown unprepared, we humans are rarely at our most confident. And when it comes to death, we have plenty of reason to feel anxious. It’s times like these that we need to hear from those who’ve gone before us. And that’s what our latest WYD In Focus provides: candid accounts from family members and caregivers who’ve been present at the deaths of loved ones—because understanding what happens at the bedside might surprise you."

Source: When You Die

Celebrating Connections: A Creative Legacy Project #hpm

Grateful for hosting and to all in attendance honouring connections.

Legacy Art Workshop Art Gallery of Burlington for the launch of the Compassionate City Charter - Burlington via @snapdBurlington