On this page you will learn FIVE steps to engaging people in ACP:
Step 1: Introduce and Explain ACP
Starting the conversation can be challenging - it helps to realize that offering people a discussion about ACP is a way you support and guide people.
- An ACP conversation is entirely voluntary, and people should be invited to participate as a way to help them and their SDM(s) prepare.
- Introducing ACP may be all that is needed -- people may take the information and engage their SDM(s) without any further involvement of a clinician.
Below are scripted examples of introducing ACP, explaining what it is and why it is helpful to prepare. How you introduce ACP will depend on your clinical setting. There will be many ways to introduce it. Also, watch for cues from people that they would like to know more about how to be prepared for the future. Click a tab that best matches your situation. Practice to get comfortable talking about ACP - it will become easier over time.
If you are wondering about when to introduce ACP, see When to introduce ACP
During a visit to the emergency department, there are several opportunities to bring up two important components of ACP -- identification of the right SDM and exploring a person's illness understanding if they have a serious illness.
1. Explore a person's SDM
Ensuring people know about their SDM is a component any emergency department clinician can ask about.
2. Assess and improve illness understanding
In the emergency department, we have a good opportunity to learn if someone understands their illness or has major gaps in understanding. We may not have time to improve their understanding, but we can note it and encourage the person to follow-up and ask for more information.
3. Communicate with other healthcare clinicians
Include in your notes any information you gained or provided about ACP -- this allows other clinicians to follow-up and carry on the discussion
Preparing for hospital discharge
Near the end of a hospital admission, is a good opportunity to explore ACP.
- Review the reasons for the admission - this is an opportunity to improve illness understanding
- Provide education around illness understanding if necessary
- Ensure the correct SDM was identified during the admission
- Introduce ACP and provide resources
- Encourage communication between a person and their SDM
For example, a person with advanced dementia who was admitted with aspiration pneumonia. Discharge is a good time to review the course of the hospitalization with the SDM and ensure that they have a good understanding of what to expect in the future. Explain that aspiration is due to the underlying dementia and the lack of the brain's ability to coordinate swallowing. Explain that this is likely to recur and begin to explore goals and values. Document the person's illness understanding, any information you gave them and any goals, values, wishes identified and make sure it is shared with other care providers in the person's circle of care.
Post discharge follow-up
When people lack decision-making capacity
But what if someone isn't interested in ACP?
Don't worry. That is okay. After you introduce the idea of ACP, listen to how they respond. Even if they don't want to talk about ACP now they may want to discuss their SDM or they may be open to getting some information.
Even if they might not be interested, you can still:
- ask if they want to talk about their SDM
- offer information to read about ACP
- explain that you are available to discuss in the future if they wish
And, remember -- they might be someone's SDM -- that might help them think about ACP differently.
Learn more about how to assess and respond to a person's readiness to talk about ACP
Step 2: Identify a person's SDM
Start by explaining that everyone in Ontario already has an automatic or default SDM(s). People often think they have to actively choose!
- In Ontario, the Substitute Decision-Maker hierarchy is defined the Health Care Consent Act.
- Using the hierarchy, help them identify their SDM(s), review the qualities of a good SDM, learn how to change their SDM if they wish by appointing an Attorney for Personal Care.
- Ask if the person wishes their SDM to talk with others before making decisions, for example, non-SDM family members, spiritual leaders, close friends etc. This is fine, but it is the SDM(s) who will provide consent in the future.
- Ask the person if there are people they would not want the SDM(s) to talk with. That is useful information for the SDM(s).
For information on how to use the hierarchy, identify SDM(s) and support substituted decision-making, see
Clinician Guide to Substitute Decision-Making
Step 3: Offer resources and follow-up
Provide a link to the ACP-Ontario website with all the information people need to learn about ACP.
This will be all some people need - they will use the information, talk with their SDM(s) and the clinician has no further role.
Others will choose to return and discuss the questions and information about ACP with their clinician.
Follow-up ACP conversations include:
- Facilitating an ACP discussion with a person and their SDM (discuss answers to the six ACP questions)
- Answer other questions about ACP
- Support illness understanding
Step 4: Facilitate ACP by exploring six domains
There are 6 domains to explore when facilitating an ACP conversation. Not everyone will need all six questions, but these form the basis of the conversation.
Why these domains?
- Illness understanding: there is evidence of very poor understanding among patients with incurable & progressive
- Information: this is an opportunity to meaningfully meet individuals information needs. This includes paying attention to health literacy, coping mechanisms and titrating information skillfully.
- Values: there is evidence that values-based conversations are more likely to impact patient outcomes rather than decision-focused conversations.
- Worries & Fears: A different way for people to express values.
- Trade offs: helps explore the conditions under which a person would want treatments and what is important to a person.
- Near the End: is a further, more specific way of expressing values.
Click on each question of the ACP Conversation Guide for details
1. What do you know or understand about your health?
For people with early to late chronic progressive illness, the focus is on how the person understands his or her own illness.
A person's response may uncover an opportunity to address misconceptions or to add in information they are lacking.
1. The person's understanding might be superficial, reflecting something they've been told. Make sure you explore it further to see if they have full understanding.
- For example, some people with advanced metastatic cancer will say "I know the cancer is not curable", however, they believe that there will still be treatments over time to give them a normal or near normal lifespan.
2. A person might describe what seems to be unrealistic hope (what is often inaccurately call denial).
- this doesn't mean the person does not understand the incurable, life limiting and progressive nature of their illness.
- often, this is a person using an essential coping mechanism.
- gently explore (rather than quickly correct) whether they need more information or whether they are finding it difficult to accept the information.
“I hear that you are hopeful that your kidney disease will be cured. Thank you for sharing that...tell me more about what you are hoping for? Have you heard anything about what else might happen if cure isn't possible?
I’m wondering if in the past you’ve been told different than this at any time? That a cure may not be possible? If this has been said, what are your thoughts on this? If this has not been said, how would it be for you to hear this?”
“Is it important for you to maintain hope? Tell me more about this.”
- If you assess the patient as needing to communicate a sense of hope, please document this and proceed to the next item in the ACP Conversation Guide.
- If, in your assessment, the patient truly has not been provided the necessary information, the next component of ACP will be quite relevant.
Training workshops will improve your skill and comfort, particularly with more challenging situations.
2. What information do you need?
What additional information would be important or meaningful to the patient?
Does the person like to know big picture concepts or many details?
- How should information be delivered?
- The patient may also tell you that he or she does not want information or ask that you tell someone else the information. Patients have this right and it is important to document this.
- Assessing the patient’s understanding of medical language and probabilities (e.g. CPR survival rate) will help guide how future information will be provided.
Based on the above, you can:
- Provide the necessary information to the patient and their SDM(s).
- Help identity the healthcare provider who is best suited to answer outstanding questions.
- Help formulate questions to ask that healthcare provider based on what you have learned is considered to be important.
If providing clinical information is not within your professional scope, you might consider delaying the remainder of the ACP conversation as a patient can more effectively reflect on wishes, values and beliefs when it is based on having an accurate illness understanding. However there will be times when you should carry on in the conversation.
A patient on dialysis may truly believe their kidney condition is curable and that the purpose of dialysis is to heal their kidneys. Accurate information may or may not have been provided in the past. Discretion of the clinician should be used to determine if it is appropriate to continue the ACP conversation. If the conversation proceeds, what surfaces when discussing subsequent items may give helpful insights as to how the clinician might structure future ACP conversations. For example, if a patient identifies one of their Values as “being well informed”, or identifying certain Worries & Fears can be useful to the clinician if revisiting Understanding.
3. What is most important to you going forward?
You want to help a person explore the essential components of what he or she considers a “good life”.
Maintain focus on the person's perspective (not the SDM or anyone else’s).
- The importance and even the definition of a value may be highly individualized.
- When talking to someone about their values, it’s important to help them express what the value means to them.
- Avoid focusing on specific abilities such as sight, mobility etc. In general, people have a large capacity for adaptation to adverse situations and it is difficult for a patient to accurately predict the impact on their quality of life. For example, rather than “the ability to speak”, an essential component of quality of life could be “communicating one’s thoughts or ideas”. This can be accomplished using means other than verbal.
If the patient has difficulty answering this question:
- Ask the patient to think about health decisions they have made in the past
- Explore how the patient made the decision(s) and how values or beliefs affected the decision-making process
Examples of personal values related to healthcare:
Independence, Spirituality, Dignity, Courage, Loyalty, Clear-mindedness, Happiness, Wellness, Longevity, Family
It might be helpful for the patient to consider how the information will be used in the future. E.g. consider an SDM who has to decide if she should consent or refuse the insertion and use of a feeding tube. The purpose of the ACP is not to arrive at a preference about feeding tubes, but to consider how values can guide future decision-making in different contexts.
Scenario A: You have a temporary swallowing problem but converse easily with those around you and take considerable enjoyment from daily life.
Scenario B: You have lost the ability to communicate, don’t recognize others and are not very interested in eating.
- Although the treatment decision is the same, the context and quality of life considerations are very different.
- If a patient places high value on being able to interact and communicate with others, explore how decisions might be made in each of the above two scenarios.
- What if the patient considers staying alive at all costs as the most important value?
- What if dignity is the most important value? How would the way dignity is thought of affect the response?
4. What concerns or worries do you have about future health?
- Worries and/or fears may be related to specific symptom scenarios or emotional / psychosocial fears.
- Some people worry about being in pain, struggling to breathe or being a burden on others.
Talking about your worries and fears with your SDM(s) and your healthcare provider can be helpful:
• To make sure you have the right information as this may lessen your fears
• To come up with a plan to try and avoid these situations or make them better for you
• To give important information to your SDM(s) and healthcare provider about your values and things that you would like to prevent from happening
- This information may give SDM(s) guidance on what might be important to avoid, prevent or aggressively manage.
- This item may provide an opportunity to identify worries or fears that can be addressed in the present through reassurance or information exchange.
E.g: a patient may have a fear of suffocating. Reassurance that breathlessness can be well managed may mitigate this fear and impact future decisions about BiPap or other respiratory interventions.
- Based on the wording of the item, it may be the first time that dying or end-of-life enters as a concrete element of the ACP conversation.
- Clinicians may need to manage a patient’s curiosity or distress about why end-of-life is being addressed.
- Reiterating the purpose of ACP and normalizing it as something all of us must consider is likely to be the most effective and efficient response to curiosity or distress that might surface.
5. What would you be willing to go through to get what matters to you?
- Attempt to clarify what a patient is willing to go through for the possibility of gaining more of what he or she considers to be important (e.g. potentially extending life).
- A patient might say that a greatly diminished quality of life would be acceptable for even a remote chance of extending life.
- A patient might approach this question by listing things they consider essential to their quality of life (things they are unwilling to ‘trade off’), for example independence or ability to communicate with family.
- Clinicians may want to remind the patient of the response they gave during the discussion of Values, Beliefs and Quality of Life.
- Explore what is valued that the patient might choose to “trade” when the potential for extending life is the alternative.
- SDM(s) may have additional questions at this point to gain a greater understanding of the patient’s perspective.
6. What is most important to you when you are nearing end of life?
This question is more relevant for patients with advanced serious illness.
- Those who have no illness or at the early stages of illness may not be able to discuss.
- The patient may express wishes related to care setting or treatments, religious ceremonies, specific music, having books read to them etc.
- If appropriate for your professional scope, this might also be an opportunity to explore with the patient and their SDM(s) what to expect in the last stages of life.
Priya's daughters had never talked to Priya about what she would value and look to if she knew she was at end of life. They have some ideas as Priya cared for her brother when he was sick. Priya did say that certain ceremonies were really important to her; and they watched her make choices for her brother when he could no longer make choices.
Notes about facilitating ACP:
- Start by giving the person a resource with the six questions (https://advancecareplanningontario.ca/acp/acp-workbook or workbook) and offer to follow up at a later time.
- Some questions are more appropriate for people with serious illness. Healthy individuals will not need to discuss their illness understanding.
- Don't expect everyone to be ready to discuss wishes for end-of-life.
- Facilitating ACP doesn't have to happen in one visit. You can book one appointment to discuss these or take several visits and do them over time.
- Even if someone only does a small amount, that is a good start - even just starting to the conversation is worthwhile.
- Remember, what is discussed during an ACP conversation is NOT consent for future care, even if it is documented in writing. Either a capable patient or their SDM(s) must give consent for healthcare decisions in the future. The prior expressed wishes are the guidance for SDM consent, within the specific illness context.
Notes about discussing specific treatments in ACP:
- Some treatments (e.g. intensive care unit admission, feeding tubes, ventilators etc.) may naturally enter the ACP conversation.
- When they do, efforts should focus on the patient’s values and the context in which they might find a specific treatment acceptable or not.
- Clinicians are encouraged to explore why the patient has a wish/preference regarding a specific treatment, as this is likely to uncover the underlying value e.g. have they recently had an experience with this treatment? Seen someone else have it? Worry that it will leave them in a state they wouldn't find acceptable?
- For patients who are in the latter stages of illness, they may have already experienced specific treatments (e.g. intubation, BiBap, admission to the intensive care unit). In this case, the treatments as well as their benefits and burdens become less hypothetical.
- Patients with chronic progressive conditions will likely face similar situations with future deteriorations and ACP conversations can become more focused. Having certain experiences, the patient may be able to better articulate their values-based preferences for treatment. Again even when treatments are recorded in these sections, it will be helpful for the future SDM(s) to understand the values and reasoning behind the preferences.
Step 5: Document the ACP conversation
- Under Ontario law, there is no requirement for either advance care planning conversations or prior capable wishes to be documented. The most recent wishes (regardless if they are written, verbal, on video etc.) guide SDM(s) in future decision-making. Adding a signature does not make it a medical order.
- If a clinician uses the ACP Conversation Guide to document a conversation, the person's signature is just to remind clinicians that this form MUST be completed in the presence of the person who MUST review what is documented BEFORE it becomes part of their medical record.
- Many institutions are creating an electronic record of ACP conversations. The law still applies that the information documented helps when making decisions, it is not prior consent to treatment or care decisions.
- Since this documentation will be an expression of prior capable wishes, the person to whom it applies must review this form to ensure they agree with what is documented.
- This is also why it is essential that any documentation is in the person’s own words.
- If the documentation is done on paper, the person can sign it himself or herself.