Planning for My Care: Proud, Prepared & Protected

April 16th is National Advance Care Planning Day in Canada

Planning for My Care part of Proud, Prepared & Protected is a FREE booklet focusing on care conversations 2SLGBTQ+ people and healthcare providers to start conversations about values, wishes and concerns to help identify who you would want to make decisions, your Substitute Decision Maker (SDM) on your behalf should you not be able to make decisions for yourself. 

Access FREE via https://www.virtualhospice.ca/2SLGBTQ/media/igkp01nf/2slgbtq-planning-for-my-care.pdf 

Many who are 2SLGBTQ+ have experienced or witnessed discrimination and ignorance in a healthcare setting. You may have received inappropriate care or, even worse, been denied care. Some healthcare workers are not aware of the challenges the 2SLGBTQ+ communities face. 

This document, focusing on care conversations for Two-Spirit and Lesbian, Gay, Bisexual, Trans, Queer, and all sexual and gender-diverse people, is intended to help you think about what is important to you, concerns you might have, and who you would want to make decisions for you if a time comes when you can’t make decisions for yourself. 

Consider giving a copy of this document to the important people in your life, and sharing this information with healthcare providers. Take it with you when you attend appointments, call 911, visit the emergency department, or access other healthcare services. If your province or territory has a process for documenting your wishes for care, ensure this information is included on those documents and kept in the same place.

Source: Canadian Virtual Hospice

ADDITIONAL RESOURCES:

For more information on advanced illness, advance care planning, palliative care, end-of-life care and grief, please visit: 

Canadian Virtual Hospice www.virtualhospice.ca 

Advance Care Planning Canada values a free, accessible and open shared knowledge amongst the community. The website provides you with all the necessary tools to inform yourself on the most recent advanced care planning updates and developments. For more information and FREE resources, visist: https://www.advancecareplanning.ca/

FREE Advance Care Planning (ACP) workbooks

April 16th is National Advance Care Planning Day in Canada

“If Not You, Who? Who would you trust to make your healthcare decisions? Planning for your future healthcare needs is important. So, we’re asking: Do you know what would happen if you couldn’t speak for yourself? Who would you trust to make those #healthcare decisions for you? 

You have the power to choose who that person is. They can be a family member, a friend, or anyone in your life that you trust to make the kinds of healthcare decisions you would want. 

• Think about who you would trust with making those important decisions for you. 

• Think about what matters most in your life and how that might help guide someone in making the kinds of healthcare decisions you would want.  

• The best time to think about this is now when you can speak for yourself. We have useful guides to help you along the way. 

Choosing a Substitute Decision-Maker (SDM)

Advance Care Planning policies can vary dependent on your province or territory. In order to ensure your end of life wishes are honoured it is crucial to have an understanding of your province or territory policies. This includes understanding what your #rights and #privileges are, as well as understanding the laws and regulations regarding end of life care, specific to your province or territory. While creating your advance care plan it is also important to make sure that you are using the correct documents for your province or territory. 

• Who do you trust most to make decisions for your health care that follow your wishes?

• Would that person be comfortable with making important decisions about your health quickly or in an emergency?

• Have you spoken to them about what matters most in your life? When someone knows what you value most in your life, they can make more informed decisions about your health care.

• What Matters Most? What does a good day look like for you?

• What situations do you find difficult?

• What gives you strength in difficult times?

• What spiritual, cultural or religious beliefs, practices, or ceremonies are important to you?

• What do you value more: the possibility of a longer life, or the possibility of a better quality of life? 

These questions can help guide you and your substitute decision-maker and assist them to prioritize what matters most to you when weighing care options.

April 16th is Advance Care Planning Day. So, ask yourself: If not you, who?” 

Source: Advance Care Planning Canada 

There are multiple FREE Advance Care Planning (ACP) workbooks, toolkits and guides specifically created to follow the provincial/territorial requirements for your advance care plan. Visit for FREE FREE Advance Care Planning (ACP) resources across Canada https://www.advancecareplanning.ca/acp-across-canada/

Cancer Mythbusters: Is Palliative Care Only for End-of-Life Patients?

"Palliative Care is an often misunderstood specialty, focused on providing support and pain management strategies to cancer patients throughout all stages of their illness. This approach, which can be blended into curative cancer therapy, focuses on care for the whole person: mind, body, and spirit."

Source: Cancer Mythbusters - Is Palliative Care Only for End-of-Life Patients?

Calling for a Palliative Care Culture

Palliative Care is the future of medicine "It has social and political dimensions that spring from its grounding in a commitment to relieve total pain, which includes spiritual pain."

Source: Calling for a Palliative Care Culture

What is Advance Care Planning?

Source: Speak Up Ontario

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

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

Having tough end-of-life conversations — before it's too late

“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark.  They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’ 

If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.

‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”

When Patients Leave ‘Against Medical Advice’

"As physicians, we must explore our patients’ reasons for wanting to be discharged and have open and truthful conversations with them. We assume that keeping them in the hospital is always better for their health. But health encompasses the physical, mental and psychological.

In the end, my patient’s leaving was not about our therapeutic alliance. It was not about me at all. It was about her, the patient, as it should be."

This is not Casualty – in real life #CPR is brutal and usually fails. #ACP #Awareness

"Modern medicine, however, still shies away from discussions about natural death and dying, and is more comfortable in the realms of what can be done. Doing something always trumps doing nothing. Healthcare professionals have become willing interventionists, and we cannot stop meddling, interfering and attempting to fix.

Many people I speak to presume that if the label “Not for CPR” or “DNACPR” (Do Not Attempt CPR) is added to their notes, this might preclude them from other resuscitative treatments such as antibiotics, fluids and blood transfusions. Dispelling this myth takes time and reassurance. Patients can still have active, resuscitative measures if they become increasingly unwell, but remain not for CPR for when their heart stops".

"A parting lesson from my parents". ~Andrew Dreyfus

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"As I have become more involved with this work, I have wondered whether the CEO of a large health plan is the right person to talk about end-of-life care. But I only have to remember how important this issue was to my brother and my parents to realize that — in this case at least — my personal experience should inform my professional actions. Everyone, regardless of economic, cultural, racial, or geographic differences, must have their choices and values heard and respected. Everyone deserves the chance to live the best life possible, to the very end".

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'.”