Advance Care Planning

FREE Death Café at the David Braley Health Sciences Centre, McMaster University

In celebration of Advance Care Planning Day 2024, I am honoured to co-facilitate a FREE Death Café at the David Braley Health Sciences Centre, together with Dr. Alan Taniguchi, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

Registration is required for this FREE Death Café on Wednesday March 27th (6-8pm) via Eventbrite

Death Café is an international movement where people, often strangers, gather to eat, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group. Please note that Death Café is NOT a grief support group, nor is this a grief counselling session.

Death Café is a respectful, public event where people of all communities and belief systems are welcome to have respectful discussions about death.

Interesting conversation is guaranteed! For more information, please visit Death Café

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/

April 16th is National Advance Care Planning Day in Canada.

It’s about conversations. It’s about wishes. It’s how we care for each other.

Advance Care Planning is about having conversations with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself in case of a health emergency. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals.

Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you are unable to consent or refuse treatment or other care.

  1. Think about what is most important to you – your values, wishes and beliefs.

  2. Learn about your overall health. This may include current conditions you want to better understand.

  3. Decide on your Substitute Decision Maker(s), one or more people who are willing and able to speak, for you if you cannot speak for yourself.

  4. Talk about your values, beliefs and wishes with your Substitute Decision Maker(s), family, friends and health care providers.

  5. Record your values, wishes and beliefs in your Advance Care Planning Guide, in a letter, poem, video or audio recording.

Source: Advance Care Planning Canada

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 

Living My Culture www.livingmyculture.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, visit: https://www.advancecareplanning.ca/

April 16th is Advance Care Planning Day in Canada

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April 16th is National Advance Care Planning Day in Canada, a day to promote conversations about your wishes and values for your future health and personal care in the event that you are unable to communicate for yourself. This year’s #ACPDay2021 is based on the theme "Advance Care Planning: An Essential Conversation for Everyone".

The ACP in Canada website - https://www.advancecareplanning.ca/acpday/ - features FREE downloadable resources, including posters and social media graphics for organizations and individuals across Canada to promote ACP.

Canadians have spoken, and although 80% of the population believes Advance Care Planning is important, less than 1 in 5 Canadians have an Advance Care Plan. Fortunately, the ACP website at www.advancecareplanning.ca is full of free information, tools, and conversation starters to help with starting the conversation. There are also links to provincial and territory-specific ACP resources across Canada.

How are you connecting with friends and family during these times? #ACPinCanada.

A Conversation... About Advance Care Planning, Life, Love, Loss & Legacy

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SO grateful to have this conversation about Advance Care Planning, Life, Love, Loss & Legacy with Laurel Gillespie at Advance Care Planning Canada with the Canadian Hospice Palliative Care Association.

Creating safe spaces for people to have informed conversations about wishes and values is so important. Exploring and honouring connections and meaning for any individual and family in the face of illness and loss can be invaluable.

Please join us for a discussion about these invaluable conversations, while also exploring ways to connect with healthcare providers, and most certainly, with those we love.

Consider who, and what, gives your life meaning? Not just at the end of life, but now. It’s never too soon, but it can be too late.

Click here to listen to this episode of “A Conversation With…

In support of Movember, a free webinar demystifying Advance Care Planning for Men with Prostate Cancer

In support of Movember Canada & TrueNTH, am sharing a free webinar demystifying Advance Care Planning for Men with Prostate Cancer.

Facing prostate cancer is difficult enough. But advance care planning (ACP) can give your loved ones the confidence and peace of mind to make healthcare decisions for you if you are unable to communicate for yourself. This webinar will provide information about why ACP is important, and a step-by-step guide to advance care planning.

The purpose of this workshop is to:
- Provide an overview of ACP
- Foster understanding as to why ACP is important for anyone facing prostate cancer,
- Help men with prostate cancer, their partners and families learn the steps involved in the ACP process, and how to start these conversations,
- Explore some free ACP resources from Advance Care Planning Canada

The free webinar can be accessed via https://vimeo.com/189996475

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FREE Advance Care Planning Webinar

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This FREE webinar will demystify Advance Care Planning in Canada and explore the stigma alongside some common barriers. We will dive into better understanding of Advance Care Planning and why it is relevant for EVERYONE, especially now. Lastly, free national resources will be provided to assist in beginning these essential conversations. 

CLICK HERE to watch the full presentation.

How to Die Well

"To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture."

Read the full article at Time

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.”

Why Talking About Death Is the Key to the Longevity Revolution

 

"Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it."

Why Talking About Death Is the Key to the Longevity Revolution by Ellen Goodman

 

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

The End Game: Conversations about Life and Death #hpm #ACP

Throughout life, we celebrate milestones - weddings, births, anniversaries - but the milestone that we are most often afraid to confront is one of the most impactful - death. 

For many people, talking about end-of-life is uncomfortable or even taboo. But sooner or later, we all face death. What fears are holding us back from having essential conversations that will improve our own lives and the lives of those we care about? 

We understand that death is informed by the lived experience and want to create opportunities for the lived experience to be better informed. We have just launched a new series creating public forums to empower people to have conversations about living and dying. We want to foster opportunities for the general public, healthcare professionals, first responders, health science students, residents of long term care, financial planners, faith communities and community organizations to talk about living and dying. We strive to normalize conversations about living and dying in a non-judgemental, non-denominational, upbeat and interactive session. We aim to provide attendees the opportunity to consider their values and receive credible resources regarding advance care planning and end-of-life care.

For more details about our free event or to register please follow this link to EventBrite

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“Spoiler alert: we are all going to die

One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.

According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?

For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…

As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer… 

The beginning of the end

…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.

As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…

We fell silent and the first song began…

A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.

We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.

No one danced.

When the song ended there was silence.

Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.

We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.

The end

The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”

Fraying at the Edges. A Life-changing diagnosis. #Alzheimer's @nytimes

“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”

She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone… 

Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”

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”.

My Gift of Grace. Helping everyone have better conversations about end of life.

"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.

The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.

Get the game at mygiftofgrace.com, or find out about our public engagement work at ourcommonpractice.com "

#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.”

How to tell everyone what kind of #music to play at your #funeral. #ACP

“For Andrew Smith, a six-day stay in hospital got him thinking about life and death.

Granted, he was only having a toe removed. But what would happen if he passed away? Did his family know what kind of music he would want played at his funeral, or whom he would want in attendance?

 ‘I thought, I really need to get this stuff written down. But then I decided there’s a lot of people in the same situation as me, so if I can create a website where people can do it at home, at their own pace, that would be awesome,’ says the 44-year-old from Halifax who now lives in Vancouver.

The result of his thinking was Final Wish, a secure website that stores information that people would want shared at their time of passing. That includes what should be done with social media accounts and who should look after pets. Upon death, that information can be accessed by preappointed confidants.”