Am thrilled to be offering a full-day of training on Feb. 1st for the Halton District School Board on “EXPLORING GRIEF AND LOSS LITERACY: SUPPORTING AND EMPOWERING SCHOOL COMMUNITIES”
Will be honoured to be present with so many professionals as we spend the day exploring:
- Grief and Loss Literacy (related to dying, death and non-death losses)
- Stigma Related to Illness, Dying, Grief
- The Dialogue of Loss
- Support Across School Communities
- Promoting Capacity & Engagement
- Opportunities for Self-Care
Looking forward to sharing some brilliant resources!
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
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.
The links to the podcasts of Death: A Part of Life are listed below:
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.
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.
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?
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?
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
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.
Petition to the Minister of Health
- the 2011 Report from the Parliamentary Committee on Palliative and Compassionate Care outlined the importance of quality palliative care, which must be available to all Canadians in order for there to be a real choice at end of life;
- upwards of 70% of Canadians do not have access to quality palliative care; and
- Canadians deserve to be treated with care and compassion during their last days to live as well as they can for as long they can.
Source: E-petitions. House of Commons
Less than 600 Canadians had signed this online petition as of October 1st.
Please sign the online petition to the Minister of Health is open for signature until November 9, 2016.
Please advocate for a national strategy and universal access to Hospice Palliative Care. Show your support for Bill C-277 to improve access to care for all Canadians.
This enactment provides for the development and implementation of a framework designed to guarantee all Canadians access to high-quality palliative care.
1. This Act may be cited as the Framework on Palliative Care in Canada Act.
Development and implementation
2. (1) The Minister of Health must, in consultation with the representatives of the provincial and territorial governments responsible for health, as well as with palliative care providers, develop and implement a framework designed to give Canadians access to palliative care — provided through hospitals, home care, long-term care facilities and residential hospices — that, among other things,
(a) defines what palliative care is;
(b) identifies the palliative care training and education needs of palliative health care providers;
(c) identifies measures to support palliative caregivers;
(d) collects research and data on palliative care;
(e) identifies measures to facilitate a consistent access to palliative care across Canada; and
(f) evaluates the advisability of amending the Canada Health Actto include palliative care services provided through home care, long term care facilities and residential hospices.
Source: Parliament of Canada
"There is no way to escape losing a sense of who you once were. And after a year (or two), you wake up from this transformation and realize that you were not actually dying; you just felt like you were. And then you must make a choice. One option: You can give into the horror of it all and retire to bed. No one would blame you; it is a tempting alternative that lurks at the back of my brain from time to time even now. The other option is that you take the pain and harness it to do things you could not imagine ever possessing the strength to accomplish. Being around children like my daughter will teach you the very meaning of life."
“ ‘...I am asking that we make space – physical, psychic room, to allow life to play itself all the way out – so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.’ ~ BJ Miller
Each of our lives is a story. As we plan for its final chapter, we have the opportunity to incorporate our passions, relationships, and spirituality to make dying better. How might we make this process more human-centered so we can live fully until the very end? Let’s re-imagine how we prepare for, share and live through the final chapter of our story.”
"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."
“We often hear from family members that they find great value in our Guide for Family Caregivers, detailed information on how to handle such common end-of-life symptoms as breathing problems, pain, changes in behavior and sleeplessness. The piece details several signs that may signal a loved one is transitioning from life to death, such as no appetite or urine output, and changes in breathing sounds and patterns.
We encourage people to be a calm presence, to hold the loved ones hand, to call in others who wish to be present, as well as call Hospice for support. Hearing is the final sense to go, so we encourage family members to continue speaking to their loved one, reassuring that everything is all right.
‘What we are trying to do is normalize what they are going through,’ says Joel. Death, after all, is not an aberration but a universal end we all one day meet. ‘We want the family members to know what the very end of life looks like and what they can do when the time comes. What can they do? Literally, just hold your loved one’s hand’.”
In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.
"Marking family and personal occasions in this way has become increasingly important to all of us; these events intersect long, quiet weeks with laughter and company. And here’s the often unacknowledged benefit to keeping watch on a widower: With my grandparents dead and my friends all around my age, he diversifies my social life as much as I do his. He gives me a perspective on the city we live in that my peers simply don’t have. We spend our time together talking about our dissimilar lives and the things that matter to us, reminiscing about his many rich years, and looking up old poems in the vast library that lines the walls of his house. He is my friend and I miss him when I am away. As it turns out, nonagenarians are good company".
"It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.
And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, 'I love you, too.' They are worth it all.
Take it from me.
Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more."
"Though everyone eventually dies, few know how to talk about the end of life. ‘‘People don’t know what to say,’’ Wanda says. ‘‘They’re afraid.’’ Be prepared for strange and stilted reactions. Some want to believe in a fix and will give you unsolicited health tips. (‘‘Don’t eat sugar.’’ ‘‘Avoid gluten.’’) You can ignore their suggestions but acknowledge the heart underlying them. People may offer to pray for you. ‘‘Prayers are good, but maybe what I need is someone to listen,’’ Wanda says. For that type of engaged listening, you may need to seek out a professional, like a trained social worker or a psychiatrist. Sometimes people who know about your condition — those you tell will tell others — will pretend your situation does not exist. Or weirder still, they will temporarily forget".
When he returned from the hospital to find hospice nurses awaiting him at his home, Eva says, he turned to her and said, "I think they think I'm gonna die."
And while he continued to get weaker as he approached the end of his life, Eva says she and her father had not spoken in depth about the prospect of his dying — until the conversation she recorded for StoryCorps.
"Do you think you're dying?" she asked him.
"Everybody dies," he replied.
"Are you afraid?"
"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"
She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.
"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)".
“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.
After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’
That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”
"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.
But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.
Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.
Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."