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

Camp Erin offers a weekend for kids coping with grief and loss

"We strongly believe that the Camp Erin experience is life-changing. Family members and caregivers experiencing their own grief, while simultaneously helping their child to grieve, are often overwhelmed and feel helpless. Grief left unchecked can lead to depression, behavioural issues, suicide and substance abuse.

Much of what is addressed at camp is the isolation kids feel around their grief; it is a poignant experience for the campers to have the chance to go away for three days, (oftentimes, these kids have never been up north) with other people their own age, forming a bond over their loss. Camp Erin is a safe place for young people to identify with other kids who are feeling the same emotions, including anger, worry, guilt and often, a "Why me?" outlook.

When kids come back from camp, at ease and with the confidence to talk about their grief, it gets passed along to their parents."

Full article: Camp Erin offers a weekend for kids coping with loss

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".

What Flying Can Teach Us About Rising Above the Turbulence

“I wonder if we can find in our own heart our own pilot who will search for more calm airs. Could we move up or down a bit to find a more peaceful state of the heart? Do we buckle up and patiently persevere through the storms of life? Is the turbulence something to avoid and get over, or is it life itself? Part of life?

I know there is wisdom in looking at serenity, not at merely “transcending” the storm, but also in navigating life. We are never promised pure bliss, or perfectly smooth sailing. A mature spiritual life consists of being able to navigate the storms. This I know.

I do remember the teachings of Buddhism, reminding us that the muck that the lotus rises through sustains the flower. This I know.

But I also know that not all of these stages are equally good, equally nourishing, equally beautiful for our hearts. That there are in us, inside us, more peaceful skies. Somewhere higher, or deeper, in us there is also a calm and tranquil realm of the spirit. It is breathing with the serenity above the turbulent clouds that there are blue skies and the warm sun. It is the state of being one with the One, breathing with the Source of all the universe. And what majestic intimacy there is Here. Now.

That serene realm, above the clouds, is not There. It is here, right here already with us…”

Full Article: On Being

Hospice Palliative Care is about Living Well. Right to the End. 

It's National Hospice Palliative Care Week and it is so important to demystify and destigmatize the incredible breadth and scope of Hospice Palliative Care. 

Hospice Palliative Care is about Living Well. Right to the End. 

Hospice Palliative Care is aimed at relieving suffering and improving the quality of life for persons who are living with, or dying from, advanced illness or are bereaved. 

The goal of Palliative Care is to provide comfort and dignity for the person living with the illness, as well as the best quality of life for both this person and his or her family*.

Palliative Care services are helpful not only when a person is approaching death but also during the earlier stages of an illness. Palliative care may be combined with other treatments aimed at reducing or curing the illness.

*”family" is whoever the person says his or her family is.

For more information and resources regarding Hospice Palliative Care, please visit the Canadian Hospice Palliative Care Association

The Wisdom of Uncertainty

“ ‘What we’re looking for is where we are.’

Can we learn to live in joy amongst all that this great unknowing has to offer? Jack guides us through some of the key principles of the awakened heart, encouraging an attitude of graciousness toward the mysterious nature of our existence.”

Full article at JackKornfield.com

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

When Grief Gets Physical: dealing with physical grief symptoms

"There is simply no way to anticipate what grief feels like.  It is one of those experiences that you can describe to someone, but it is impossible to really understand it until you are forced to live with it.  Of all the unimaginable aspects of grief, there is one thing we hear people say time and again that they really didn’t expect: physical grief symptoms. They might not have been fully able to appreciate the emotional rollercoaster of grief until they were on it, but they at least had a sense it was part of the process.  The physical stuff is something many people tell us they simply didn’t know to expect until it hit them like a ton of bricks.

When this happens, it can be distressing.  Anytime we have new, uncomfortable physical issues it is distressing.  But in grief that can sometimes be coupled with a new level of anxiety.  In the past, a headache was a headache.  After the devastating loss of a loved one, you are all-to-familiar with the reality that life can turn on a dime."

Read the full article at What's Your Grief

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. 

How to Speak to Someone About an Unspeakable Loss

"Today, as I recall the loss of my own infant son, I think about the one person who did truly comfort me. She arrived at my house with a bottle of fine brandy and said, “This is everyone’s worst nightmare. I am so, so sorry this has happened.”

Then we sat on the lawn and she poured me a drink as she listened to every horrible detail.

As I look back now, I still feel how much her gesture helped me cope through those early days of pain. She didn’t try to fix me or try to make sense of what happened. She didn’t even try to comfort me. The comfort she gave came through her being in it with me.

You can’t fix what happened, but you can sit with someone, side by side, so they don’t feel quite so alone. That requires only intention, a willingness to feel awkward, and an open, listening heart. It’s the one gift that can make a difference."

What Complicated Grief Is Like

"...Today, I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying — though often tinged with sadness.

Now I find myself going and doing and functioning, and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is. There are still times, especially good times, when the pain of missing Eric stops me in my tracks. But there are good times.

I believe I have grown in my ability to be compassionate and to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t un-know it. But when you endure struggle, you can also learn empathy.

I am sharing this because until I was diagnosed and treated with complicated grief — which I had never even heard of before and which 7 percent of bereaved people struggle with — I felt isolated and like my life had no meaning. I hope my story will reach anyone who’s feeling like that and show them there is hope. I even appeared on CBS to spread the word about complicated grief and help others who may be struggling. The Center for Complicated Grief has a website and can be found here."

Death Café Burlington

In Celebration of National Advance Care Planning Day, Death Café Burlington will be held on April 12th, 2017 from 7-9pm at Saving Thyme.

Death Café is an international movement where people, often strangers, gather to eat cake, drink tea 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 Cafe, 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!

To register for this free event in support of the Compassionate City Charter, please visit Death Café Burlington

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

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".

The Conversation Placebo

"What’s often overlooked is that the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe."

A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness

This video provides a brief overview of an expressive arts project that I complete with families of all ages, following the diagnosis of a life-limiting illness, through to end-of-life and into bereavement. Presented at the 13th Annual Innovations in Palliative Care – Leadership, Courage & Community. McMaster University. Department of Family Medicine. Division of Palliative Care. Faculty of Health Sciences (November 2016). This project serves as a therapeutic intervention facilitating communication and honouring connections in the context of life-limiting illness and can be completed by anyone, anywhere at any time. 

It’s a profoundly intimate experience when we are allowed to care for someone… that compassionate connection can transcend so many barriers, and can sometimes even transcend suffering. That connection can be extraordinary.

We all have a role to play in helping to honour someone’s legacy. I believe as Health Care Professionals, like those we care for - we can be courageous in the face of illness, and vulnerability and uncertainty…

We can step out from behind the protection of our roles and in doing so, provide invaluable opportunities for families to connect, and collectively process experiences from time of diagnosis through to end-of-life and into bereavement. 

Source: You Tube. A Therapeutic Intervention Facilitating Connection in the Context of Life-Limiting Illness

On Talking About the Hard Things of Life @racheltoalson

“We are taught to believe that strength and perseverance and hope do not include brokenness. But that’s simply not true. Our brokenness, our sadness—they are the precursors to becoming strong and mighty. We step into our cracks and we kneel down and we pour our attention on them, and that is what becomes the superglue that puts us back together.

We do this alone and we do it together.

When we turn away and hide our sadness or our mess or the hard places in our lives, apologizing that we can’t get it together, what we’re doing is denying others the opportunity to step into our cracks with us. To come alongside us and say, Hey, you’re not alone. To take our broken pieces and and glue them back into place.

The opposite of turning away is turning toward. I know that sounds obvious. But what exactly is turning toward in a situation like this one?

It’s acknowledging our sadness, however deep it goes. It’s talking about our sorrow, however founded or unfounded it may be. It’s sharing our pain, our sickness, our burdens with one another and healing together—whether that together is with friends, family or people you just met who share your own pain or sickness or the kind of burdens you carry.

Maybe some won’t always take our brokenness the right way. Maybe sometimes they’ll call us names or shame us or make us feel like we’ve done the exact thing we should never have done. But the only way to survive the hard places is to open them to the light. The only way back to strength is to acknowledge how this thing has weakened us. The only way out is through the cracks.”

Treating troubled family dynamics reduces complicated grief

“Professor David Kissane, who heads the department of psychiatry at Monash University in Melbourne, has developed a family-focussed model of grief therapy to prevent complicated bereavement. A trial published in the Journal of Clinical Oncology earlier this year found the therapy reduced the severity of complicated grief in high-risk families and the development of prolonged grief disorder.

Professor Kissane says bereavement therapy for families is more effective than therapy for individuals when grief is being perpetuated by dysfunctional family relationships. He says the most common family configuration he sees is parents and their children, but for some families it includes a neighbour, grandparents or aunts and uncles.

‘Family centred care is based on the idea that families that grieve together stay together and they heal their grief very well,’ he tells Palliative Matters.”