Who would speak for you if you were unable to speak for yourself?
Is this something you’ve thought about, never considered, or perhaps you’ve already moved forward with advanced care planning (ACP)? No matter what it’s an important conversation to have.
You may also hear the terms ‘living will’ or ‘advanced care directives.’ It’s important to note that terms, laws and regulations differ by province and territory in Canada. As the National Institute of Aging (a US based organization) explains:
Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know—both your family and your healthcare providers—about your preferences. These preferences are often put into an advance directive, a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want.
An advance directive also allows you to express your values and desires related to end-of-life care. You might think of it as a living document—one that you can adjust as your situation changes because of new information or a change in your health.
At Eirene we believe conversations around end-of-life care have the power to change how you live, knowing your wishes will be respected and that you will die the way you want. ACP most importantly communicates your values and what is meaningful to you, it also allows a better understanding of how you make decisions, which ultimately helps guide decisions about your care later on.
Speak Up Canada defines ACP as “a way to share your wishes for future [healthcare] and to name someone who can speak for you if you couldn’t speak for yourself.” It may involve things like “thinking about information about treatments that you do or don’t want to have (such as CPR or mechanical ventilation), as well as other information about your care at the end of life (for example, religious rituals, being able to see a family member, dying at home or in palliative care etc.).”
Why Does ACP Matter?
Because “life can change in an instant.”
Imagine you’ve “been in a serious car accident [and have] lost the ability to speak for yourself or direct your care. You do not recognize your family or friends. Do you know who would make health and personal care decisions for you?”
Ensuring these plans are in place helps you and your loved ones “prepare for a time when you may not be able to make health decisions for yourself and when someone else–your substitute decision maker (SDM)–would have to make decisions for you.” It allows you to have peace of mind knowing your wishes will be followed and you will be cared for in line with your values.
ACP also becomes increasingly important as informed consent is mandatory in many regions. For example,
[i]n Ontario, the law requires all healthcare providers to [receive] informed consent, or refusal of consent, before providing a patient with any treatment or care. Health practitioners must tell you about your illness and what may be done to treat you. You then have the right to make a decision and agree to or refuse the treatments offered. This is called healthcare consent: it is a basic patient right to decide what healthcare to receive. Only in emergencies, to save a life or to reduce suffering, can people be treated without informed consent. Consent always comes from a person: either the mentally capable person or their substitute decision maker(s).
ACP isn’t about decisions, rather it’s about preparing you, and your SDM(s) to step in to give or refuse consent for treatment, should you be unable to speak for yourself. This kind of healthcare supports “person-centred decision-making,” which “involves incorporating patient perspectives, priorities and goals throughout an illness trajectory from advance care planning through to treatment discussions and informed consent.”
Informed consent is important because it means making an informed decision “after you have been given information about your current health condition and the treatment options.” With this kind of approach the following would be considered:
- Benefits and side effects
- Existing, if any, alternatives to these options
- What would likely happen if you refuse the options
Where Do I Start?
- Think about your values, wishes, beliefs and understanding about your care and specific medical procedures
- Learn about different medical procedures and what they can do for you
- Decide who will be your SDM: someone who is willing and able to speak for you if you can’t speak for yourself
- Talk about your wishes with your substitute decision maker, loved ones and your Doctor
- Record your wishes in writing (recommended)
- In Ontario you can express wishes orally, as well as in written documents
When Does Advanced Care Planning Come Into Effect?
“Your substitute decision maker is only called upon if you are unable to make your own healthcare decisions (e.g. you are in a coma or your illness has impaired your ability to make decisions) and “any written documents/plans are only referred to under these circumstances.” If you have a written document your SDM “can use it to guide your care and advocate for your wishes.”
The Right To Act As Your SDM
In Ontario for example, everyone has an SDM even if he or she has never prepared a Power of Attorney for Personal Care appointing someone to act in that role. Under the Health Care Consent Act, there’s a hierarchy of SDMs that includes:
- Three different types of SDMs who receive authority through different types of legal processes
- Family members who receive authority to automatically act as SMD without being appointed (you don’t have to do anything for this to be in place)
- SDM as last resort
In order to be able to act as your SDM the person must be the highest-ranking in your life on the hierarchy list of SDM(s) and meet the requirements, OR be named the Power of Attorney for Personal Care (also meeting requirements for SDM).
SDMs in Ontario
In Ontario, there are a number of requirements for SDMs:
- Being mentally capable of understanding the treatment/care being proposed and appreciating the consequences of consenting or refusing the treatment decision
- For example, Ontario law defines capacity as:
- Having the ability to understand information that has to do with making a decision about the treatment, admission or personal assistance service
- Having the ability to appreciate the likely consequences of a decision or lack of decision
- Be at least 16 years old (unless you are the parent of the incapable person)
- Not prohibited by court order or separation agreement from acting as SDM
- Available in person, by phone or via electronic communication
- Willing to act as SDM
Speak Up Ontario provides a further breakdown here.
What Kinds of Decisions Do SDMs Make?
- Consenting to tests
- Procedures or other medical care
- Starting or refusing treatment or withdrawing life prolonging measures
- Admission or discharge from a medical facility
- Moving into or receiving personal care in a long-term care home
These decisions should be based on your previously expressed wishes, values and beliefs.”
How Do SDM’s Make Decisions?
SDM is required to act in your ‘best interests,’ which means “considering the values and beliefs you had when capable, while also considering:
- Your health condition
- If you were likely to improve, remain the same or deteriorate without the treatment
- Risks and benefits of the treatment options
Choosing An SMD
This should be someone you feel would understand and honour your wishes, “someone who would be able to make health or personal care decisions on your behalf.
- Do I trust this person(s) to make decisions that reflect my wishes even if they disagree with them?
- Can they make decisions under stress?
- Can I engage the person(s) in conversations about my wishes, values and beliefs as they relate to future health or personal care?
- Can they communicate clearly with my health team in a stressful situation?
- Is this person willing and available to speak for me if I cannot speak for myself?”
Is A Living Will The Same Thing?
“In Ontario, the law does not use terms such as ‘living will’ or ‘advance directive’ and there is no requirement to record your wishes...The ‘living will’ has no particular ‘form’ in Ontario and does not need to be witnessed or signed.”
It’s important to note that in a ‘living will,’ you’re unable to “appoint someone to act as your [SDM] or any other written document” and you can “only appoint a [SDM] through a Power of Attorney for Personal Care.”
The Government of Ontario defines this as “the person you name can make decisions about your health care, housing and other aspects of your personal life (such as meals and clothing) if you become mentally incapable of making these decisions.
An Act of Love
Take the time to think about what’s important to you, what kind of care you want and who can speak for you when you might not be able. Think of it as an act of love. As Dr. Lucy Kalanathi says ACP is a “soulful thing,” meaning you “trust somebody else to speak for you … you trust that they know what's important to you in your life[,] and that they will be committed and devoted to you and who you are.” She goes on to say Atul Gawande in his book Being Mortal does a really “good job explaining how different types of medical care really fit people differently.
And people could choose a whole range of types of care intensities of care, or goals of care,” which we believe is imperative to thinking about your ACP. And as Gawande says “the ultimate goal is not a good death but a good life—all the way to the very end.”
We’re here to support you and have made it our mission to unpack difficult conversations around end-of-life planning and navigating the complexities of death care. To learn more and access additional resources visit www.eirene.ca.