More than half of us will not have the mental capacity to make our own health care decisions at the end of our life, yet we rarely have conversations to better prepare for this time or any time when we are unable to make our own health care decisions.

Ontario Medical Association – Advance Care Planning: Backgrounder OMA’s End-of-Life Care Strategy April 2014

In Ontario Advance Care Planning is a process that involves two steps:

  1. Your patients identifying their Substitute Decision Maker(s) or SDM(s) and,

  2. Your patients sharing their wishes, values, beliefs and information about what is important to them, and what they would like their SDM(s) to consider in making health care decisions on their behalf.

Why are Advance Care Planning conversations so important?

In Ontario, as health care professionals you are required to obtain informed consent before providing any treatment or care. Consent must come from your patient or from their SDM(s) if the patient is not mentally capable.

Advance Care Planning conversations can help your patients and their loved ones be better prepared for making health care decisions in the future.

The goal of Advance Care Planning is to have your patients identify who they would like their SDM(s) to be and to share their wishes, values and beliefs with their SDM(s), so they can be in the best position possible to make decisions on their behalf, if necessary.

These conversations can also help to make your job easier… you will be working with SDM(s) who have had conversations and know what to do when a decision needs to be made.

“As a long-time nurse in an Intensive Care Unit, I frequently had to approach the family of a critically ill patient to discuss what the patient wanted. Most people would say that this was never discussed with their loved one. In that case, the family would be asked to make a decision without knowing what he would have wanted and chosen for himself. The families who seemed to find the most peace with giving direction to the medical team were the ones who had discussed these questions prior to such a crisis taking place.”

Retired ICU nurse

But, my patients don’t want to talk about this?

They actually do. Your patients look to you as the expert and want to get information about Advance Care Planning from you. As health care professionals your role is to simply plant the seed, clear up any misconceptions and get your patients on the right track.

Is Advance Care Planning just for my patients who are at end of life?

No, not at all. Advance Care Planning applies to everyone. While end of life is an obvious trigger for these conversations, starting them earlier is ideal.

You cannot predict when accidents or illness may occur that could affect your patients’ ability to make their own health care decisions. And crisis is definitely not the place for these conversations. So, it’s important to start these conversations early so that your patients know who their SDM(s) is,  and are confident that their SDM(s) have the information they need to make healthcare decisions on their behalf.

Is a patient’s Substitute Decision Maker(s) the same as their next of kin, POA or emergency contact?

No, not exactly. While these are common phrases used in the healthcare system, the correct term to use in Ontario is Substitute Decision Maker(s) or SDM(s) when referring to the person(s) who will make decisions on your patient’s behalf when they are not mentally capable.

The Health Care Consent Act provides a hierarchy of SDM(s). When a health care decision is needed, and your patient is not mentally capable to make their own decisions, informed consent must come from the person(s) who is highest on this list and meets the requirements to act.

Yes, this list does include family members and attorneys named in a Power of Attorney for Personal care, but these just different types of SDM(s). Depending on your patients’ circumstances their SDM(s) may be a family member, someone named in a Power of Attorney for Personal Care, but could also be someone else. Using the correct language, SDM(s), is so important or you could miss important information.

Example.  Mary is a new patient to your office and is asked to fill out a New Patient Form on her first visit. On this form, Mary is asked to provide information about her POA. Mary hasn’t completed a Power of Attorney for Personal Care as she is satisfied with having her children be her SDM(s), her highest ranked SDM(s) according to the hierarchy. So, Mary leaves this part of the intake form blank. Unfortunately because of the choice of language on the New Patient Form, the office doesn’t collect any  information about Mary’s SDM(s) as it assumes that all patients will have completed a POA.

So the correct question would be: Who is your Substitute Decision Maker? This is an example of the importance of using the correct Substitute Decision Maker language, to ensure you are collecting the correct information. 

What if my patient has more than one person at a level of the hierarchy?

If there is more than one person in your patient’s life at any one level in the hierarchy they are considered equal ranking SDM(s). In this case, the SDM(s) must make decisions together or decide among themselves which of them will act as your patient’s SDM(s).

And what if conflict arises? If there is conflict among equal ranking SDM(s), the Public Guardian and Trustee is required to act as your patient’s SDM(s). The Public Guardian and Trustee does not choose between the disagreeing decision makers but “shall make the decision in their stead.”

What are the other requirements that SDM(s) needs to meet?

As well as being the highest on the hierarchy list, SDM(s) also have to be:

  • Willing to act as the SDM(s)

  • Mentally capable to make the decision,

  • Available when a decision is needed

  • At least 16 years of age (unless they are the parent of the mentally incapable person)

  • Not prohibited to act as the SDM(s) (e.g. Court order, separation agreement)

What if my patients don’t feel the highest person(s) on the list is right for the role?

In Ontario, your patients can choose someone (or more than one person) to be their SDM(s) by completing a Power of Attorney for Personal Care, a legal document. Your patients don’t need a lawyer to complete this document, but a lawyer may be helpful in providing information and guidance. More information about Powers of Attorney for Personal Care can be found at Community Legal Education Ontario and the Ontario Ministry of the Attorney General.

Once my patients know who their SDM(s) are, then what?

Conversations, conversations, conversations. Encourage your patients to start talking to their SDM(s) and other loved ones about their wishes, how they hope to be cared for in the future, what’s important to them. These conversations can help to provide their SDM(s) with information they may need to guide decision making if they have to make decisions on your patient’s behalf.

Do my patients have to write their wishes down? 

In Ontario, unlike other provinces, it is not a requirement for wishes to be expressed in writing. Your patients can share their wishes in any way they choose to communicate. The focus is on the conversations between patients, their SDM(s) and other loved ones.

What is important is that if a SDM(s) is called upon to make decisions on behalf of your patient, the SDM(s) are expected to follow any wishes your patient previously expressed when mentally capable. If their SDM(s) don’t know of any wishes applicable to the decision to be made, they required to act in the person’s best interests.

As a healthcare provider, it is your obligation to inform SDM(s) of these roles and responsibilities, and support them in making decisions on behalf of a loved one.

Check out this workbook it is a great resource for patients.

What can you do? It’s as easy as 1,2,3…

#1 Ask your patients…Have you ever thought about who would be the best person to make decisions on your behalf if you got sick or were too ill to make your own decisions?

Get them thinking about their SDM(s) early to make sure the right person(s) is in the role. Show them the hierarchy, and explain how it works in Ontario. The first step of Advance Care Planning is helping your patients to work through this list, identify their SDM(s) and determine if they need to complete any legal documentation to get anything in place.

#2 Educate…about the role of Substitute Decision Makers?

Help your patients to understand how health care decisions are made in Ontario, and by whom. Explain the role of Substitute Decision Makers (SDMs) … to make decisions on their behalf, the way they would make them and talk about the qualities of a good SDM(s) (e.g. trustworthy, can make difficult decisions, willing to honour your wishes)

#3 Document the SDM(s)…Make note of your patients’ SDM(s) in your records & encourage conversations.

Make sure you have your patients’ SDM(s) information in an easy and accessible place should you ever need to access it quickly. You also want to encourage your patients to talk with their SDM(s) and others about: what is important to them, their wishes, values, beliefs. Conversations are the best way to ensure SDM(s) have the information they need.

“This has improved my practice already.  I’ve been testing this for a while now and find that it’s working really well for me even in some unusual situations. Here’s an example of a patient I saw recently who is an elderly widow. I would have had no idea who to contact for her and she hadn’t thought about this before. Needless to say it prompted a very helpful discussion!”

Waterloo Wellington Resident

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