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

"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

Sign the e-petition to support Bill C-277. An Act providing for the development of a framework on palliative care in Canada

Petition to the Minister of Health

Whereas:

• 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.

A framework designed to guarantee all Canadians access to high-quality palliative care

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

Celebrating Connections: A Creative Legacy Project. A Free Public Event. Oct. 6th 2016

I am hosting a free event dedicated to making Hugs. "The physical embrace of a Hug is comforting for anyone in a time of need. In this instance, it is a creative legacy project that can be completed by anyone, anywhere at any time and is then exchanged as a lasting memento". This is a family event and appropriate for children of all ages. Please join me.

For more information or to register please visit Eventbrite https://www.eventbrite.ca/e/celebrating-connections-a-creative-legacy-project-registration-27657060011

The End Game: Conversations about Life and Death. A Free Public Event. Oct. 2nd 2016

Please join us as we host this free event. For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all die. This is an upbeat, interactive session that provides evidence-based tools regarding advance care planning, hospice, palliative and end-of-life care. Let's talk. Do you have an End Game?

For more information or to register, please visit Eventbritehttps://www.eventbrite.ca/e/the-end-game-conversations-about-life-and-death-tickets-27665945588?aff=efbevent

‘Extremis’ Trailer: Netflix Documentary Examines Realities of End-of-Life Care

"The realities of death are not easy to confront. That much is clear in the trailer Netflix just released for “Extremis,” an original documentary short exploring the harrowing decisions families must make for their loved ones in urgent end-of-life cases relying on machine-based life support.

'We’re all gonna die…and it’s good to have a little bit of a say in how,' says Dr. Jessica Nutik Zitter, the palliative care physician featured in “Extremis,” as we see images of families, doctors and patients in the midst of facing death daily.

The trailer depicts the access granted to Oscar- and Emmy-winning filmmaker Dan Krauss (“The Kill Team”) into the ICU unit of an Oakland, California public hospital. Krauss attempts to intimately examine “the intersection of science, faith and humanity” by observing personal, real-time accounts of how complicated and emotionally wrought the dying process becomes when there are opportunities for choice in death.

The 24-minute film premiered at Tribeca Film Festival in April and the San Francisco International Film Festival on Saturday. “Extremis” is set to release globally on Netflix on September 13."

Source: IndieWire. September 6, 2016

"Extremis" Trailer

#Palliative Care is not about #dying, but about quality of #living @JMyersPallCare #hpm

There are a multitude of misconceptions surrounding Palliative Care - what it is and what it isn't. Sadly, many are not open to the prospect of Palliative Care because it presented as a departure from "active care" or moreover they believe that Palliative Care is only provided at end of life. It is in fact so much more than that... I truly appreciate this article demystifying the scope and breadth of Palliative Care written by Dr. Jeff Myers, a Palliative Physician, empathic clinician, extraordinary advocate and educator...

"At a time when assisted dying dominates discussion about end-of-life care, I think it’s important to address public fears around palliative care so that people can use the information to improve their quality of life.

Palliative care is not what happens when all treatments have failed. It does not mean “giving up” or “stopping the fight.” If you are fighting cancer or Lou Gehrig’s disease, palliative care means a team of people — such as doctors, nurses, social workers and others — will help make sure you have what you need to continue fighting.

As a palliative care physician, I am deeply committed to improving end-of-life experiences for people and their families. My focus is not on the disease itself but on the impact it can have, like relieving the severity of symptoms with the overall goal of improving quality of life.

It’s my job to know what matters to you and to make sure you’re not spending time and energy on bothersome symptoms that needlessly wear you down. Pain is a good example: terrible pain from cancer can be exhausting, consume a ton of energy and is worse for the body than any medications aiming to manage the pain. There is no need for a person fighting cancer to also try fighting pain.

There is now very clear evidence that people who receive specialized palliative care actually live longer than those who do not. This is why it’s so important to understand that palliative care is not about giving up — far from it. It’s about living the very best you can for as long as you do."

How might we reimagine the end-of-life experience for ourselves and our loved ones? @OpenIDEO #hpm

“ ‘...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.”

Talking About #Death Won’t Kill You. @Kathykm @TEDTalks #Death #Education #hpm

"An unconventional death educator with an equal parts wry and wise delivery style, Dr. Kathy Kortes-Miller is committed to showing her audience that talking about death and dying won’t kill you. Using stories and research, Kathy extends an invitation to view death as not a taboo subject - but rather a shared life experience. Audience members walk away with shifted perspectives and a deep understanding that talking about death, without knowing or needing all the “answers”, actually brings us closer to our loved ones than we ever imagined possible."

When the #Patient Won’t Ever Get Better @danielalamasmd #hpm #ACP

“In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.

I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.

And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night”.

@CanadianHPCAssn #National #Hospice #Palliative Care Week Busting the #Myths #hpm

National Hospice Palliative Care Week will run May 1-7, 2016 under the theme Hospice Palliative Care First and features an FAQ, Mythbusters, and includes information for health care professionals.

"There are many ways to start the conversation about end-of-life care in Canada. Spreading awareness and education is one of the best ways to advocate for change and ensure that every Canadian has access to quality hospice palliative care.

Visit the official Advance Care Planning website at www.advancecareplanning.ca for resources to share and distribute.

Learn about the integrated palliative approach to care developed by the Way Forward project at www.nationalframework.ca

Use the “Power of 10” materials developed by the Canadian Hospice Palliative Care Association to spread the word about hospice palliative care in your communities. These materials can be found here: www.chpca.net/week

Spread the materials developed for this year’s campaign “Hospice Palliative Care First” found here: www.chpca.net/hpcfirst "

Lessons for the #Living: On #Dying and Dinner Parties @elderlyprograms #hpm

Important Conversations with Experts in the Field about #Dying and #Death. #hpm

Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.

The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm

"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer". 

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"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."

Observing the Wish to #Die at #Home. #hpm

“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’.”

#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm

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.

Why we need better #end-of-life #policies in #seniors’ residences. #LTC

“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”