Healthcare

Exploring the Language of Loss: Caring, Supporting and Empowering

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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. 

Objectives:
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/

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

Healthcare Continuing Education: Palliative Care Certificate Program at Mohawk College

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Excited to be teaching my 9th consecutive semester in the Palliative Care Certificate Program for regulated and certified healthcare professionals (RNs, RPNs, OTs, PTs, RTs, SLPs, Social Workers, Dieticians, Physicians, etc.) with Continuing Education @mohawkcollege 

It is so important to demystify the breadth and scope of this approach to care while highlighting the need for early integration of Palliative Care. Every healthcare provider has an active role to play in supporting anyone (individual or family) facing a complex illness, from time of diagnosis, through to bereavement.

For more information about this holistic and collaborative interprofessional certificate program, please visit: https://www.mohawkcollege.ca/ce/programs/health-and-nursing/palliative-care-multidiscipline-017 

Honoured to be on Faculty for the National Learning Institute hosted by the Canadian Hospice Palliative Care Association 

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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/

Extremis Documentary and Discussion

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Excited to co-host our next free public event with the Department of Family Medicine, Division of Palliative Care at McMaster University. This evening is part of our compassionate community initiative, “The 100% Certainty Project. Death: Something to Talk About". We will: feature the book “Extreme Measures" by Dr. Jessica Nutik Zitter; view the remarkable Oscar-nominated documentary “Extremis” from Shoshana Ungerleider, MD; provide Advance Care Planning resources from the Canadian Hospice Palliative Care Association; and close the evening with a panel discussion comprised of clinicians and educators. This free public event in support of National Advance Care Planning Day. To register, please visit: Eventbrite

Communication and Connection for Families Coping with Cancer

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I am honoured to have been a guest on this week’s VoiceAmerica - Live Internet Talk Radio Breast Friends Cancer Support Radio Network. Becky Olson and Sharon Henifin of Breast Friends of Oregon, both breast cancer survivors and thrivers have asked me to be their guest to discuss "Communication and Connection for Families Coping with Cancer", demystifying Palliative Care and highlighting the need to support individuals and families of all ages, from time of diagnosis through to bereavement. At the conclusion of our episode, I highlighted the National Hospice and Palliative Care Organization and Canadian Hospice Palliative Care Association as sources of information for people wanting to learn more about Palliative Care in the U.S. and Canada.

Breast Friends is a nonprofit organization started by Sharon and Becky so that no woman would feel alone on her journey and to provide needed resources to those facing the challenge of breast cancer, as well as to their families and friends. Please visit their website for more information: www.BreastFriends.org.

This episode aired live and is now archived at https://www.voiceamerica.com/episode/106520/communication-and-connection-for-families-coping-with-cancer

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Many healthcare students and providers do not feel prepared to encounter dying and death

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:

https://www.eventbrite.ca/e/100-certainty-project-death-cafe-tickets-43946860242 

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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FREE resources for families facing illness, uncertainty, grief and loss

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Am honoured to have been part of the development team for the latest resource, Kids Grief, which was just launched on the first National Bereavement Day in Canada. I believe it is important to share these valuable resources for individuals and families facing illness, uncertainty, grief and loss. This information is also helpful for any healthcare professional or volunteer wanting more information and resources when providing support in acute care, primary care or within a community setting.

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. (Source: Canadian Virtual Hospice)

Kids Grief (0-18 yrs.) http://kidsgrief.ca/

Talking with Kids and Teens about Dying and Death. What do I tell the kids? How do I support them? A free online resource to provide guidance to parents on how to support children who are grieving the dying or death of someone in their life. It equips parents with the words and confidence to help their children grieve losses in healthy ways. (Source: Canadian Virtual Hospice)

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?

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

Practising compassion in an uncompassionate health system. Hearts in Healthcare

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"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 

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

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

How to Die Well

"To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture."

Read the full article at Time

5 ways to improve care at the end of life

"All of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.

The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication."

Read the complete article at: STAT

The diagnosis of a serious Illness. Important considerations to discuss with the Healthcare Team

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.