Dorothy Stephens is the Advance Care Planning educator for Dying With Dignity Canada’s Winnipeg Chapter. She has a Bachelor’s degree in nursing from the University of Manitoba and worked as a Registered Nurse in Winnipeg hospitals for 30 years. She also has experience as a caregiver and health care proxy for several family members, including during end-of-life care.
An Advance Care Plan (ACP) is a document that expresses your wishes for the type of health care you would want to receive (or not want to receive) and allows you to appoint someone to make health care decisions for you, if you are too ill to speak for yourself.
It’s an important document – and yet fewer than one in five Canadians have a written ACP. Fewer than 10% have had a conversation with their doctor about their wishes. Almost half have never even talked with their family or loved ones about their wishes regarding health care. And many of those who do have an ACP have only a very basic document that names a Substitute Decision-Maker (SDM) but contains few (if any) instructions for care.
Consider the consequences of that lack of preparation. If you enter hospital seriously ill or injured, and no one in your family has any idea what treatment you would accept (or refuse), the health care team will ask your next-of-kin to make decisions or sign consents on your behalf. If no relative is available, treatment will be based on best practices and professional ethics. The result is that you might not get the care you want (or you might get care that you don’t want); the decisions made for you are not the ones you would have made yourself; or the person making decisions for you isn’t the one you would have appointed.
I am a retired nurse, and I have seen the consequences of not having clear health directives. Imagine yourself in any of these situations – all based on real events:
You’ve suffered from a major stroke. You have lost the ability to speak or swallow, and have diminished capacity to process information and make decisions. As you lie in your hospital bed, you hear your children arguing out in the hallway about your care. The doctor has asked them to decide whether to continue treatment (including tube feedings) in hope that you may make some recovery, or to provide comfort care and allow a peaceful death. Your kids are divided, and their discussion is becoming hostile. One says, “You’re just gonna let Dad die because you won’t agree to treatment!” and another retorts, “Mom has no quality of life, and you want to keep her alive with tubes because you don’t have the guts to let her go!”
You make an ACP that appoints your spouse as the first SDM, with one of your children as back-up. You congratulate yourself on having done it, and file it away. Twenty years later, you end up in hospital with a life-threatening illness. The physician calls the first SDM (your spouse) but it quickly becomes obvious that they have developed dementia and are unable to comprehend the discussion. The doctor then calls the back-up SDM. The child responds with “My parents never told me that they were appointing me as their decision-maker. They never talked about what they wanted, and I have no experience with health care. I think you’d better call my brother instead.” How effective is that ACP for you?
You are taken to hospital by ambulance after a serious accident in which you suffered a head injury. The admitting nurse asks your family if you have an ACP. Your kids are sure you made one, but they don’t know where it is. They hunt high and low but can’t find it anywhere, and they can’t remember what’s in it.
You’ve written an ACP stating that if you are seriously ill with no hope of recovery, you don’t want to be kept alive by heroic measures or artificial means, and you’ve told your family that. But then you end up in hospital after a serious injury. You are unable to take any food or liquid orally, and the doctor wants to insert a feeding tube. Your kids refer to your ACP and state that you wouldn’t want it, but the doctor responds that a feeding tube is not a heroic measure, because it just provides basic nutrition into the stomach, “not like an IV or anything”. Now your kids are confused; they’re not so sure what you would want, and they can’t agree amongst themselves, either. The child you have appointed as your SDM has to make the final decision, and they’re getting a lot of pressure from the others.
Your oldest daughter was always the rebellious child. As an adult, your relationship is strained, because she has come to espouse many beliefs that clash with yours. When the pandemic hit, she was among the first to be vaccinated, but you prefer natural immunity and never got the jab. She believes in western medicine, while you favor alternative therapies. You raised her in your religion, with firm values about the sanctity of life, but now she has rejected that and calls herself an atheist. Yesterday you were in a serious car accident, and now you’re lying sedated and on a ventilator in the ICU, unable to communicate. You overhear the attending physician talking to your daughter, telling her that as your next-of-kin, she must make medical decisions for you. You’re terrified she’ll consent to medications you don’t want, or that she will refuse treatment that you would want. You panic but are unable to act.
Having a clear, well-thought-out, effective ACP will benefit not only yourself, but those closest to you who may be forced to make difficult decisions for you sometime in the future. Following the guidelines in DWDC’s Advance Care Planning kit can help ensure that your wishes for future health care are known and followed. DWDC has ACP forms specific to every province, and you can also contact the local Chapter nearest you for more local information and guidance.