Outcomes of ACP
- Identify a person's SDM(s) (automatic or appointed).
- Ensure a person is comfortable with their automatic SDM(s) or, if they aren't, show them how to appoint an Attorney for Personal Care (POA).
- If needed, help a person and their SDM(s) understand the nature of any serious illness and what to expect over time.
- Introduce a values-based tool such as ACP-Ontario so that goals, values and wishes are explored between person and their SDM to help prepare for future decision-making.
Benefits of ACP include:
- Respecting an incapable patient’s right to self-determination in critical illness and end-of-life.
- Improving both patient and family members’ satisfaction with end-of-life care.
- Decreasing the level of distress experienced by family members when treatment or care decisions are required.
- Decreasing unwanted investigations, interventions and treatment.
- Decreasing likelihood of being hospitalized or critical care admission if this is not align with a person's values.
- Ensuring a prepared SDM.
Who can introduce and facilitate ACP?
All healthcare professionals can learn how to introduce and facilitate ACP.
Physicians, nurses, social workers, occupational therapists, physical therapists, dieticians, etc -- they all can explore illness understanding, give information, and explore goals and values. At times there might be specific medical information that requires a particular clinician, however all professionals can support a person to get that information.
Healthcare professionals can support the ACP process in many ways. For example, they can:
Who can participate in ACP?
Everyone can participate in ACP - the degree of their participation will depend on their capacity.
- We should help people who lack capacity or who may never achieve capacity express their wishes and values. This is important information.
- The population of Ontario is also culturally, linguistically and religiously diverse. It's important to avoid cultural assumptions when approaching an advance care planning conversation with people.
- Information for ACP for First Nations is available here: See ACP information for First Nations.
- A person’s preferred language is another factor to consider. HPCO has written resources in several languages. You can order ACP workbooks or posters in several languages.
For health adults, an ACP conversation will be more hypothetical than for someone with a serious illness.
Invite a person to visit the ACP Ontario website to learn more - on their own time and at their own pace.
- You do not need to ask about illness understanding.
- Many healthy people will have given little thought to concerns about end of life and will not be willing to discuss this at this point.
- Identifying an SDM and learning about Substitute decision-making may be the main focus for this person.
- Recognize that a healthy person may in fact be the SDM for someone else in their life, so ACP should be very relevant to them.
The point is to introduce the concepts of ACP and SDMs and to normalize them. These conversations will become more relevant as the person ages.
Individuals experiencing structural vulnerability
Individuals experiencing structural vulnerability face high morbidity and mortality, which necessities early advance care planning.
- Consider how adverse social determinants of health will affect whether your patients’ wishes can and will be respected.
- Explore, anticipate and address potential barriers to care.
- Explore social support networks and caregivers and actively involve them in care planning.
- Recognize that the healthcare system is a place where many people have and continue to experience trauma.
- Integrate harm reduction and trauma informed and anti-oppressive care into your practice.
- Meet people where they are at, be non-judgemental and prioritize their safety, choice and control.
Here is a good resources:
Stajduhar et al. Too Little Too Late: How we fail vulnerable Canadians as they die and what to do about it.
U Vic Institute on Aging & Lifelong Health.
People with early progressive or chronic illness
At the time of diagnosis of a progressive or serious illness, help people be prepared by introducing ACP.
- ACP conversations will be an opportunity to discuss illness understanding and learning about living with the illness.
- This is a good time to start getting people aware of the progressive nature of their illness, before they are very sick.
- As this is earlier in the disease trajectory, you can titrate prognostic information to their level of readiness.
- These patients may or may not be ready to discuss worries & fears about dying, but may be able to discuss worries and fears about future states of health.
- Questions can be answered when the patient feels ready to address them or as their illness progresses.
People with advanced illness
In advanced illness, ACP and person-centred conversations become very relevant.
As disease progresses, the likelihood of delirium or other complications increase. These episodes result in a temporary (or permanent) loss of capacity for decision-making. It is important to discuss this with people so they can be pro-active in learning who their SDM is and discussing their values, wishes, fears and worries.
In this group, illness understanding and information become even more important because there is more information about the likely trajectory of the illness and what decisions might be in the future. This means preparation can be more specific and might involve wishes, beliefs and preferences about specific treatments.
For example, wishes and beliefs about specific treatments may enter the ACP conversation as patient may have had personal experiences (e.g. ICU admission, intubation, BiPAP etc.).
It is important to introduce the concept of ACP, provide information about ACP/SDMs, provide education about illnesses and to support conversations about a person's goals and values . Find out how to introduce and facilitate ACP conversations here.
People with intellectual disabilities
People with intellectual disabilities, based on their capacity, can still participate in ACP. Even though they might lack the understanding of their illness trajectory, they still can express their values and beliefs and their SDM should be listening to that whenever possible.
- Most people with intellectual disability can and want to talk about what is important to them and what they value.
- We should make all efforts to involve people in discussions and conversations about what matters to them.
People who have lost capacity to make specific treatment or
People who lack capacity for treatment decision-making can still express themselves and their SDM should be open to these expressions and opinions.
Remember too that capacity is treatment-specific and time-specific.
- A person may lack capacity to make a treatment or care decision at one time but mentally capable at another time.
- A person may lack capacity to make one treatment decision (living environment) but have capacity to make another treatment decision (treatment for hypertension).
For this population as well, we must remember to prepare SDM(s) for future decision-making. Preparing means:
- Ensuring they know their role as an SDM.
- Helping them gain good illness understanding and know what to expect in the future with the illness.
This preparation will make decision-maker less distressing in the future.
Children and mature minors
The Supreme Court of Canada has ruled that preferences of mature minors (children under the age of 16) must be given sufficient weight as they mature and demonstrate stability of values.
- Even if they are not “adults”, children and mature minors can be encouraged to express wishes and values to help with decision-making when needed.
- In Ontario there is no specific age of consent. As long as a person is able to understand and appreciate the situation and the potential treatments (i.e. they are capable), then that person can make their own healthcare decisions, regardless of their age
A family centred approach is taken to help everyone understand the child/adolescent’s illness and what might be expected to occur in the future
Even when a child or adolescent is not capable, they should be included in the discussions about their healthcare as much as possible. Advance Care Planning in this population involves preparing the child or adolescent, as well as their substitute decision-makers (in most cases the parents) for future decision-making.
Learn more about ACP in the paediatric population
When should you introduce ACP?
Click on the headings below for more information.
Then see the examples for Althea, Bob, Tran, Jacob, Anaya and Priya.
1. Make time to check in and offer to talk about the future
During any clinical encounter, take the opportunity to check-in and ask:
"I wonder if during our next visit, we might take a step back and talk about your (illness) overall?"
"do you feel like you know enough about your illness and what to expect in the future?"
"you seem concerned about feeling fatigued...it is common for someone to get weaker over time with this illness...can we spend some time talking about what is happening?
"this is a good opportunity to take a step back and talk about your health and what you might expect in the future...what do you think?"
"how is your family dealing with the changes in your health?"
"how are you managing with the changes in your health?"
2. Build the following triggers into your practice
Ask about illness understanding and about interest in advance care planning when your patient:
- is discharged from hospital
- has a specialist visit
- has decreasing functional ability
- has an advanced chronic or life-limiting illness
- is 65 years of older
- is a resident of or about to enter long-term care
- is at risk of losing capacity to make treatment decisions
- does not have family/friend to act as SDM (therefore will one appointed through PG&T)
You can also link ACP to other routinized practices such as routine chronic illness visits
3. ACP is an ongoing process of reflection
- Revisit with any change in health or when a person's wishes, values or beliefs change.
- Revisions and updates must be communicated to the person's SDM(s).
- Any documentation of ACP conversations must be dated and should contain the most up to date information.
4. Watch for opportunities in regular encounters.
- Pay attention to cues and questions raised by patients/clients/residents.
- They are easy to overlook in a busy clinical setting, however, they are signals that people need more information or are looking for guidance and preparation.
- Notice the cues and questions and offer to discuss, even at a later date.
What is the right information for a substitute decision-maker (SDM)?
- Good illness understanding - helping SDMs have accurate illness understanding decreases distress when and if they have to step in to make decisions.
- Conversations between a person and their SDM that focuses on values, goals and wishes rather than specific treatments (feeding tubes) or broad statements (do everything).
- In order to make the information helpful for an SDM, make sure to ask questions to clarify general statements to understand the values that underlie.
- Here are some examples where clinicians clarify general statements.
Read about Althea's values
Read about Bob's values
What about "Level of Care" forms
Level of care forms are not appropriate for use as "consent" for treatment decisions.
- Blanket direction for care such as: do not transfer to hospital, no surgery, etc cannot be given prior to a health event.
- People are encouraged to express their wishes, values, and priorities (I'd wish to avoid hospitalization, I'd like to be with my family as much as possible, I value my independence) but specific decision-making happens at the time when there is relevant clinical information available.
Learn more about ACP
Now that you know some basics, learn more, gain confidence and skill in facilitating ACP: Click on the links to learn more.
Frequently asked questions
What if a person would prefer to have a friend as their SDM rather than a family member?
A person can choose to have a friend as their SDM by appointing them as an Attorney for Personal Care. They will have to complete the legal paperwork for this.
Does an SDM have to follow the person's wishes?
- The SDM must look at any wishes made when a person was mentally capable.
- They must ask themselves two questions:
1) Do they apply to the current decision?
2) Are they possible to follow?
- SDMs do not have to follow a wish that is impossible to honour.
- There are many things that can make a wish impossible to honour. Decisions will depend on the person's health and care needs, finances and the number of people around who can help care for a person.
- For example, a person may tell an SDM that they wish to remain at home but there may be times when a hospital or long-term care
is the best place to receive care based on the person's needs.
How will an SDM make decisions if a person has not had any ACP conversations?
- If a person's wishes are not known, the SDM(s) must act in a person's “best interests.”
- “Best interests” has a specific meaning in law: your SDM must consider a person's values and beliefs.
- They would also consider:
- The person's health condition
- If the person was likely to improve, remain the same or deteriorate without the treatment
- The risks and benefits of the treatment options
Can a person do ACP even if they don't have an SDM?
- Everyone in Ontario automatically has an SDM - you find the automatic SDM on the hierarchy as defined in the Health Care Consent Act.
- If there are no relatives or appointed SDMs, the Public Guardian and Trustee (PGT) will act as SDM if someone is not capable of making healthcare decisions.
- A person can choose to have ACP conversations with their healthcare providers.
- Healthcare provider can share this information with the PGT if they have to make healthcare decisions
Should a person include their SDM in ACP conversations?
- Yes! It is good idea to involve a person's SDM as much as possible in these conversations.
- ACP is meant to prepare an SDM to make healthcare decisions in the future if a person loses capacity to make those decisions themselves.
- If a person isn't comfortable including their SDM in ACP conversations, think if there might be someone else they would prefer in the role.
- An SDM may have to make some hard choices. Knowing about the person and their values can make this easier.
What if a person changes their mind after they write down their wishes?
- Advance Care Planning is a process and a person can always change their mind.
- In Ontario, it is the most recent wishes that SDM(s) should consider when they make a decision.
- Things a person tells an SDM are just as important as what they put in writing. The most recent is the one that's important.
- For example if a person write down something today and then tell the SDM something different in a month, those are the wishes they need to consider.
Our resource guide has the answers to all your questions about ACP, SDMs and Consent