Inconsistent and inadequate patchwork of palliative care across #Canada needs to be priority. #HPM

"Federal and provincial governments need to guarantee access to palliative care in legislation, the Canadian Cancer Society said Tuesday as it released a report on the state of care across the country.

In its findings, the society said critically ill patients are falling through the cracks of the health care system and improvements are needed to address the patchwork of service that exists.

In the absence of national standards, individual jurisdictions are left to develop their own policies, programs and guidelines that result in inconsistent and inadequate palliative care, the report said".

What Would You Write If You Knew You Were Dying?

This talk was given at a local TEDx event, produced independently of the TED Conferences. Writing for the future. Recording conversations Rachel has a passion for honest conversations, and recognises the precious and precarious nature of life. She supports families when an adult develops cancer and helps those at the end of life to tell their story.

"When life runs out of tomorrow's, what you realize you've got is today" ~ Rachel L. Smith

Before the tomorrow's run out, use this opportunity today to think about what you will you say to your loved ones... And then say it...

Toward Evidence-Based End of Life Care. ~NEJM

"The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug".

Finding the Words: How to talk with children and teens about death.

"It's hard to talk to children and teens about death and dying, particularly when someone they love has died or might die soon. Our instinct as caring adults may be to shelter them from painful truths. Yet as Dr. Wolfelt emphasizes, what kids need most is our honesty and our loving presence.

This practical and compassionate handbook includes dozens of suggested phrases to use with preschoolers, school-agers, and teenagers as you explain death in general or the death of a parent, a sibling, a grandparent, or a pet. Other chapters include possible words and ideas to draw on when you are talking to kids about a death by suicide, homicide, or terminal illness. At times grown-ups must also have very difficult conversations with dying children; this book offers guidance. A final chapter discusses how to talk with kids about funerals, burial, and cremation".

Inpatient Hospice Palliative Care Directory free via iOS and Android.

"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.

The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.

For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".

This App Will Help You Sort Through Your Views On Dying.

"There are apps for nearly everything -- ordering food, catching rides and finding dates, to name just a few of the common tasks people accomplish via a swipe of a screen. Now, a Boston-based company wants to make thinking about and planning for death just as simple.

Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow.

'One of the biggest problems right now is that even if you want to have these conversations, most of us have no idea where to start. It's daunting and overwhelming,' Chen said.

'Even though we know ourselves, we may not truly understand our own values around end of life because most of us haven't spent much time thinking about it. We developed the app as a way to ease people into thinking about the end of life'.

The app is targeted toward users who want to talk about dying to their loved ones, as well as those who want to share their end-of life-wishes with their doctors and caretakers.

'We interviewed dozens of health care professionals and routinely heard doctors say that bringing up advance care planning ‘is the hardest part of my job.’ Even doctors who are trained in how to have these conversations find it challenging to bring up,' Chen said. 'Additionally, there's often not a lot of time at the doctor's office. It makes sense to provide a synchronous tools that empower people to think about things on their own and with their families while they're in the waiting room, or at home'.”

Best Endings. End of Life Planning Made Easier.

"It’s not just medical decision at end of life: we each have personal preferences. This often needs time and thought.

3 points to keep in mind:

1. Thinking about your end-of-life can be exhausting and emotional.
2. Thinking through what’s important often means having ‘Aha!’ moments about yourself.
3. Determining personal choices at end of life can give you and yours peace of mind.

What’s important?

What to consider?

How much do I want to know?

You are The Boss"!

"My Directives". Now’s the time to get started.

“Emergencies can happen at any time, leaving you too injured or ill to communicate decisions about your medical treatment. MyDirectives helps you create your own emergency medical care plan for your family and doctors so they can make decisions on your behalf".

Life and Death Planning: Low effort, High Reward. "Get Your Shit Together" Webresource

"There are a few simple things I wish I had taken care of before my life went sideways, like a will, living will, and some details jotted down. Should the ground fall out from under your feet—plan now for a softer landing. In fact, it's easy to finish the planning and basic papers your life needs.

In 2009 my husband was killed in an accident. In the following hours, weeks, and months I was shocked by the number of things we had left disorganized or ignored. Critical documents you can spend a fraction of the time doing now. Here are those core items, streamlined.

GYST™ now and breathe a huge sigh of relief. You can do it".

Advance Care Planning. Speak Up!

"Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.

It means having discussions with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals"

Click on the above image to learn more.

The Way Forward: An Integrated Palliative Approach to Care.

"Imagine a time when hospice palliative care is available to Canadians when and where they need it; where living well until death is the goal of care". 

The Paternalism Preference — Choosing Unshared Decision Making.

"Consent is not merely the granting of permission but an exercise in choosing, and choice requires disclosure of a certain amount of information. How much information is adequate? Rather tautologically, as much as necessary to decide: 'The scope of the physician's communications to the patient must be measured by the patient's need, and that need is whatever information is material to the decision'.”

Finishing Strong: Moments of Life Made Possible by Hospice.

"In September 2012, Bryan Caldwell was diagnosed with Hodgkin’s Lymphoma. A former professional football player in the NFL, rancher and surfer, he embodies strength. His wife, Krista, a nurse with Houston Hospice El Campo, even tells the story of how the morning before he was diagnosed, Bryan mowed the yard with a collapsed lung.

Six months into his fight with lymphoma, Bryan learned his cancer was unresponsive to medical treatments. He knew he wanted to spend his remaining time living without pain, at home, surrounded by all he loved. So he chose hospice care.

'Our whole philosophy is not to stay sitting, it’s to stay moving and to keep living each moment that comes along,' says Bryan. 'Hospice provides that golden opportunity for me, every single day. If I have the energy and I feel up to it, I’m getting out there'.”

Miracles Don’t Come Cheap.

"As I rushed through the hospital lobby on my way to the intensive care unit, I saw the palliative care team speaking to a young woman in a wheelchair. She was beautiful, her cheeks full and round, her mouth in a constant soft smile as she spoke. She sat regally in her chair, the red of her sweatshirt anchoring my eyes in the dim hospital lobby. She was such a vision of beauty and health that it took me a second to realize that her right leg was amputated below the knee.

As the treating doctor for this critically ill patient, I had been sure she would die. And I was wrong. Her very presence in the lobby felt like a reprimand".

The Error in ‘There’s Nothing More We Can Do’.

“ 'There’s nothing more we can do'.

These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.

Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?"