Resources for Continuing the Conversation…
Published in 2012 and currently being revised, this guide is designed to help you begin conversations with family members, friends and health care providers about advance care planning preferences. You may not know that any ‘Living Will’ or advance care planning document prepared prior to September 2011 when the legislation changed is not considered legally binding consent or a refusal of treatment. Any documents prepared prior to the date of legislation change are now considered an expression of an individual’s wishes and may be used to guide one’s health care team and temporary substitute decision maker as they made decisions about an individual’s health care. These documents do not replace an advance care plan.
Please note -The forms provided in the My Voice guide reflect the law at the date of publication. Laws can change over time. This guide does not replace medical or legal advice.
Printed copies of My Voice: Expressing My Wishes for Future Health Care Treatment can be obtained by donation at Advance Care Planning Workshops hosted by Sunshine Coast Hospice Society or at the SCHS office.
The CHPCA is the national voice for Hospice Palliative Care in Canada advancing and advocating for quality end-of- life care in Canada. Current issues and hospice palliative care resources are shared along with links to the National “Speak up” campaign. Part of a larger initiative on Advance Care Planning/ACP in Canada, “Speak Up” is overseen by a National Advance Care Planning Task Group comprised of individuals representing a spectrum of disciplines including national non -profit organizations, health care, law, ethics and research.National Advance Care Planning Day held annually in Canada on April 16th is a day for you and others to think about and share your wishes for future health care. Speak Up is about conversations; it’s about wishes and it’s a way to show how we care for each other.
The”Speak Up” – Advance Care Planning BC Workbook will help you think about what’s important to you – and what you’d want people to know if you couldn’t speak for yourself. The Workbook includes questions that can help you think about your values and beliefs, and what you would like others to know. You can answer as many of the questions you like, and your answers will become part of your summary plan when you complete your Workbook.
Advance Care Planning gives you time to consider and reflect on the kind of health and medical care you would consent to, or refuse, in a crisis. The best time to make an advance care plan is when you are younger and your health is still good.
Advance care planning begins by thinking about your beliefs, values and wishes regarding future health care treatment. It is about having conversations with your close family, friends and health care provider(s) so that they know the health care treatment you would agree to, or refuse, if you become incapable of expressing your own decisions. Steps to creating your Advance Care Plan are highlighted in this link.
An advance care plan is a summary of the kinds of health care you do or don’t want to have if something happens to you and you can’t make health care decisions for yourself. It tells your family and your doctor what to do if you’re badly hurt or have a serious illness that keeps you from deciding what you want. An advance care plan also lets you appoint somebody (such as a family member or friend) to make health care decisions for you if you can’t make them for yourself. This designated person is called a substitute decision-maker, or a health care representative, agent, or proxy. It may be hard to know what to include in your advance care plan. Take your time, and use the questions provided to help you get started.
In recent years the laws surrounding consent to health care have become more formal and more technical. This is largely due to the desire to increase self-determination in the making of health care decisions. For health care providers this means providing enough information so that adults or their substitute decision makers can make informed decisions about consenting to or refusing treatment. For adults this means finding ways to express their wishes in advance so that if they become incapable, their wishes will be respected and followed. This Guide is designed to help health care providers understand the basic legal requirements for securing a valid consent (or refusal) for a proposed course of health care treatment for an adult in British Columbia, as of September 1, 2011.
This video was prepared as a Decision Aid to help prepare patients and their families for shared decision making about Cardio-Pulmonary Resuscitation (CPR) and what to expect following it’s use. J. Kryworuchko, R. Gallagher, R. Fowler, D. Heyland & D. Nicolle (2012)
Tips to help you talk to your loved ones about their end-of-life wishes including Help for Consumers – Cemetery and Funeral Services
Medicine has triumphed in modern times, transforming the dangers of childbirth, injury, and disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should. Through eye-opening research and gripping stories of his own patients and family, Dr. Gawande, a surgeon, writer and public health researcher reveals the suffering this dynamic has produced.
The Conversation Project began in 2010 and is dedicated to helping people talk about their end-of-life wishes. This group recognizes that when it comes to end-of-life care one conversation can make all the difference. Early in The Conversation Project Dr. Karen Boudreau shared a Letter written to her family outlining her personal wishes ‘Don’t Panic’ – It’s OK Letter (PDF)
Released in 2011, ‘Consider the Conversation: A Documentary on a Taboo Subject’ is an intimate story about the American struggle with communication and preparation for life’s end. It contains the perspectives of patients, family members, doctors, nurses, social workers, clergy and national experts from around the country. The goal of this film is to inspire dialogue between patient and doctor, husband and wife, minister and parishioner, parent and child.
Nurse and Author Yvonne Heath, stresses the importance of planning for your death, no matter where in your life you are. “The best time to plan for end of life is when you’re young and healthy; the next best time is now,” she says. Discover how living fully can help you die peacefully and learn how to start “The Talk” about end-of-life wishes and planning.
Five Wishes is changing the way America talks about and plans for care at the end of life. Five Wishes has become America’s most popular living will because it is written in everyday language, and helps start and structure important conversations about care in times of serious illness.
Online blog for those who want to talk about end of life issues.
Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking, One Slide, with just five questions on it. These Five questions are designed to help get people talking about their preferences.
A documentary project from KBTC Public Television, In My Time of Dying explores the way we approach the end of life in America, and brings together diverse voices to ask new questions, and challenge old notions. Interviews with medical experts and spiritual leaders are woven together with intimate portraits of people facing imminent death.
A guide to help you find out what you need to do to ensure your health care desires, and your financial concerns are legally stated, so they can be carried out according to your wishes.
Before I Die… is an interactive public art project that invites people to share their hopes and dreams in public space.
The No Cardio-Pulmonary Resuscitation (No CPR) program is a cooperative effort between Canadian MedicAlert® Foundation, Emergency and Health Services Commission – British Columbia Ambulance Service, Ministry of Health Services, and British Columbia Medical Association.
Fostering End-of-Life Conversations, Community and Care among LGBT Older Adults’ aims to foster effective communication, create community and facilitate care for LGBT persons at the end-of-life. They aim to raise awareness of the unique challenges that this population faces as they age and approach end-of-life.
As part of the Public Guardian and Trustee or PGT’s mandate, assistance may be provided in preparing representation agreements for eligible individuals
If you had a choice, where would you choose to die? This film shows how difficult it can be for families to make that decision on a loved one’s behalf. Here we see a granddad, daughter and granddaughter struggling to cope with an impending death. With moving performances and reflections on happier times, this short film highlights the importance of discussion for all involved. A carefully crafted short film, which highlights the importance of making your end of life wishes clear, from deciding whether you wish to be resuscitated to planning your funeral. Consisting of five scenarios, which came as a direct result of community involvement, the film conveys a powerful and emotionally charged message. This poignant resource has been created to act as a stimulus for changing the way the nation thinks about death. http://www.dyingmatters.org
Other Media Links
“You only die once. Do it on your own terms” ZDoggMD
Mohamed Dhanani, ‘Opinion’ The Star, September 20, 2016
Despite spending much of his career in the health care field, it took a very personal experience to drive home how poorly prepared health care providers are to help us through the one certain life experience that awaits us all: death. Mohamed Dhanani’s father in law, Ijaz Ahmad was treated by eight different doctors each with different ideas about what his wishes not to be on life support meant and how involved the family should be in making decisions. ‘This inconsistency – the waiting, the arguing, the feeling of powerlessness – was our family’s worst experience with a health care system of which we are so often proud’.
Andre Picard, The Globe and Mail, April 19, 2016
If you want your wishes respected, you have to express them. Most Canadians don’t do so. A poll commissioned by the Canadian Medical Association, found that 95 per cent of people think that talking about death with a loved one is important, but only 30 per cent have done so, and a mere 16 per cent have taken concrete action as a result. The principal reason people give for avoiding ‘The Conversation’, and making concrete plans, is that it creeps them out.
Study Author says, ‘ We are not providing patient-centred care if we’re over-treating at the end of life’
Many critically ill hospital patients would rather not have aggressive medical interventions, such as CPR, at the end of their lives. But a new study shows that in Canada, their wishes often don’t match up with patients’ hospital charts.
‘It isn’t like this on TV: Revisiting CPR Survival rates depicted on popular TV shows’
Try this unique way of starting the conversation about advance care planning by viewing this rap video by Medical dramas make resuscitation look twice as effective as in the real world a study from the University of Southern California/USC finds. The study outlines that ‘most people have no knowledge of actual CPR survival and thus make medical care decisions for themselves and family members based on inaccurate assumptions”. In addition more than 60% of CPR recipients are older adults over 65 and may not understand that the actual immediate survival rate is less than 37% and long term survival is roughly 13%. The findings from this study emphasize the need for improved physician-patient communication and discussions. J. Portanova, K. Irvine, JY Yi, S. Enguidanos. Resuscitation, Vol. 96. P. 148-150. Published on line: August 18, 2015.
How to Talk About Dying By Ellen Goodman, New York Times, July 2015
Ellen Goodman, a founder of the Conversation Project writes an Opinion Piece in the New York Times, ‘When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.
Try this unique way of starting the conversation about advance care planning by viewing this rap video by ZDoggMD
White Coat, Black Art , CBC Radio with Dr. Brian Goldman, June 7, 2015
An aging population means more and more families are faced with challenging end-of-life decisions. But how can you tell when that end is actually going to come? Surprisingly, many doctors find it difficult to recognize which patients are close to death. A study just published in the Canadian Medical Association Journal helps take away some of the guesswork.
LGBT End-of-life Conversations helps seniors find services that are LGBT-friend – March 25, 2015
The recognition of LGBT rights may have come a long way in Vancouver and other parts of Canada, but many queer seniors still face discrimination when it comes to end-of-life care, says one B.C. gerontology expert.
Being Mortal – February 10, 2015
FRONTLINE follows renowned writer and surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life.
Seeking a Beautiful Death – February 9, 2015
Before making an advance directive, talk with your doctor and your caregiver about just how far end-of-life care should go at the cost of comfort.
A New York Times article that looks at how doctors choose to die. Physicians emphasize how individuals and families can avoid the difficult conversations they need to have together and with their doctors about the emotional side of dying. “We pay for another day in I.C.U.,” one physician said. “But we don’t pay for people to understand what their goals and values are. We don’t pay doctors to help patients think about their goals and values and then develop a plan.” But the end-of-life choices Americans are making are slowly shifting.
When faced with a terminal illness, medical professionals, who know the limits of modern medicine, often opt out of life-prolonging treatment.
We turn to doctors to save our lives — to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.
Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.
– Dr. Atul Gawande, Being Mortal