Demystifying Hospice Palliative Care is essential!

National Hospice Palliative Care Week in Canada is May 2nd-8th, 2021.

Proactive and equitable access to Hospice Palliative Care is not standard, with barriers (including a lack of education, funding and research) contributing to the myths that impact delivering high-quality person and family-centred collaborative care. Integrated support for loss, grief and bereavement is lacking.

Did you know....

-Between 62% and 89% of those who die could benefit from palliative care, including nearly everyone who does not die unexpectedly

- 51% of the children who died in 2012 only received Paediatric Palliative Care for the last 30 days of their lives

-62% of Canadians who received palliative care did so in an acute care hospital in their last month of life

-Few Canadians (15%) have early access to palliative care in the community

-80% of the time, palliative care was provided during admission was unplanned or through an emergency department  

-Canadians between the ages of 45 and 74 are more likely than younger adults and older seniors to receive palliative care

-There are ~88 residential hospices and the majority require a prognosis of <3 months to be admitted

Source: CHPCA Fact Sheet 2021 

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

#BustingTheMyths about Hospice Palliative Care

It’s Hospice Palliative Care Week in Canada. 

The campaign (May 5th – 11th) this year focuses on #BustingTheMyths about Hospice Palliative Care

This year, the Canadian Hospice Palliative Care Association (CHPCA) designed a “Busting the Myths” campaign as a response to the need to educate Canadians including caregivers, physicians and all healthcare providers, citizens and political leaders around common myths about hospice palliative care.

The #BustingTheMyths campaign aims to empower Canadians through education by identifying and clarifying misperceptions about Hospice Palliative Care in Canada.

Working together to educate one another is a vital step in the pursuit of excellent Hospice PalliativeCare.

Source: CHPCA Canadian Hospice Palliative Care Association

A Wonderful evening at the Burlington Death Cafe!

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

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.

#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."

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

#Prepare for a good End of Life. #ACP #InformedChoice #EOL. Judy MacDonald Johnston

“Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.”

#Alone on the Range, #Seniors Often Lack #Access to #Health #Care. #QOL

“In most of the United States, families help with driving, shopping and activities of daily living as their relatives age. When adult children leave their rural homes, a key component of elder care goes missing.

‘There’s a question of whether people have to go into nursing homes prematurely’ because they lack family caregivers, Dr. Glasgow said.

In their absence, neighbors and churches can play compensatory roles. Her research in rural areas has shown that older adults actually prefer to accept services from their churches rather than from government programs.

Satellite clinics and telemedicine can help bridge some of the health care gaps. For digitally adept older adults, the Internet already allows easier shopping, entertainment and social interaction.

Dr. Glasgow, among others, has called for better transportation options and for more senior housing, so that rural communities can bring services to clusters of people who need them.”

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.”

The Meaning of #Life: #Palliative #Care Makes Every Moment Count. #hpm

"For someone facing a serious, chronic illness, the answers to that question take on a sharp focus. A patient with heart disease might want enough energy to walk around the neighborhood. A cancer survivor may want to feel like herself again after rounds of chemotherapy. Others might have a goal of seeing their children get married—or perhaps to get married themselves.

Helping patients get the most out of life is the aim of palliative care—which could surprise some people who associate the specialty with hospice, or care delivered in the final days and hours. Palliative care services do indeed benefit people nearing the end of their journey, but the field has become much broader over time. Many patients with a life-threatening disease now start receiving palliative care early—sometimes soon after diagnosis..."

#Dying Better, Even If It Means Sooner. Delaying #death with excessive, expensive end-of-life care often does more harm than good.

"Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones".

#Health Sentinel: Lack of #knowledge about #palliative care limiting its benefits to #patients, #hospitals. #hpm

"When Gerald’s physicians discussed options and next steps, palliative care was among them. Rozanne, a retired teacher, was familiar with hospice but unaware of palliative care as a specialized service.

'I didn’t have a clue,' she said, but added that through those services, 'our every need was met.'

Multiple studies show that, compared to awareness of hospice, “There’s significantly less familiarity with palliative care,” said Dr. Lyle Fettig, director of Indiana University School of Medicine’s Hospice and Palliative Medicine Fellowship program centered in Indianapolis…

Palliative care, according to the New York-based Center to Advance Palliative Care, is appropriate for any age individual and at any stage of a serious illness, whether that illness is cancer or a chronic condition, such as heart or lung disease. The goal is to improve quality of life for both patient and family through a holistic, interdisciplinary team approach”.

I'm Trying to Die Here. ~ Rev. Dr. Carla Cheatham

"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)".

Helping #Children #Cope with #ALS

"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches". 

A thank you letter to David Bowie from a #Palliative #Care doctor

“So… to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you”.

It's Not About #Dying. ~ Dr. Gian Domenico Borasio. #HPM

"This talk was given at a local TEDx event, produced independently of the TED Conferences. Palliative care is about living, not dying. The fact that we will die is the only certainty that we have in life. Looking back on their lives, dying patients share their insights with us and thus teach us how to live. All we need to do is to listen".

Palliative Care, a different voice in #Healthcare. ~ Dr. Timothy Ihrig. #HPM #QOL

"Dr. Timothy Ihrig explains the benefits of palliative care that prioritizes a patient's personal values and navigates a serious illness from diagnosis to death with dignity and compassion".