Learn terminology & definitions
Advance care planning (ACP) The purpose of ACP is to prepare people and their SDM(s) for decision-making in the future. While ACP can be for healthy people, it gets more and more important as people develop serious and progressive illness.
Goals of care discussions (GOCD) and consent happen when treatment or care decisions are needed. Good ACP helps people and their SDMs be prepared to make decisions.
Advance Care Planning
- Conversations to confirm a person's substitute decision-maker (SDM) and prepare that SDM for future decision-making
- Focus on values and what's important to the person
- ACP is not consent for future care
Goals of Care Discussion
- Discussions in the context of a current illness about a person's values & goals leading up to a treatment or care decision
- Aim is to align available treatment options with a person's goals
Identify the right conversation for each person
Mrs. June Carrera is a healthy 70 year old woman in your practice. She is divorced and has two grown children, Helen and David.
What are the outcomes of ACP for a healthy person?
Learn more about ACP >
- June identified her automatic Substitute decision-maker (SDM)
- both children are her SDMs as they are at the same level in the SDM hierarchy.
- You clarified the role of the SDM and helped her appoint a POA if she wishes;
- she prefers to just have Helen as her SDM as she isn't close to David so you explain that she needs to complete a Power of Attorney for Personal Care that names Helen as her legal SDM
- You provided her a resource (ACP Booklet or On-line Booklet) to help them have values-based conversations -- to prepare Helen in case she has to make health care decisions in the future.
- you remind June to revisit these conversations with Helen over time
Mr. Chan is a 78 year old man in your practice. He has diabetes and moderately advanced kidney disease. He is married and has two children. At this time, there are no imminent treatments needed, so ACP conversations are to prepare him (and his SDM) for future decision-making.
Illness understanding is key in this population! We know that many people with serious illness do not understand the progressive nature of their illness and so are caught by surprise and distressed when treatment decisions arise.
What are the outcomes of ACP with a person with serious illness:
Learn more about ACP >
- Mr. Chan is comfortable with his automatic substitute decision-maker (SDM) -- his wife.
- You have clarified the role of the SDM and encouraged Mr. Chan to help his wife become aware of her role.
- Mr. Chan and his wife have learned about his illness and what to expect in the future.
- You provided Mr. Chan an ACP resource (booklet or on-line) to explore and discuss his values and priorities.
Mr. Roth is an 84 year old man with advanced dementia. He doesn't understand nor appreciate his illness. He is married to Agnes and they have three children. His wife Agnes is his automatic SDM. Agnes needs to be prepared for future decision-making. You can also support the children in the same way even though they aren't his SDM. Agnes wants to make sure they are involved in decisions as well.
What are the outcomes when you prepare an SDM such as Agnes?
Learn more about the role of SDMs >
- You have ensured that the SDM (Agnes) is aware of her role as Mr. Roth's SDM. She wants all the children involved in decisions as well, which you have reassured her is fine.
- You have helped Agnes and her children learn about Mr. Roth's illness(es) and what to expect in the future - this is so important to help everyone prepare.
- For example, they should to learn what to expect as dementia progresses, for example the loss of safe swallowing, the risk of infections and the terminal nature of dementia.
- You have explored and discussed any pre-existing wishes, values and priorities Mr Roth may have expressed while capable.
- Agnes understands how these can inform decisions she'll need to make in the future.
Ms. Picone is a 65 yr old woman with metastatic colon cancer. Her cancer is no longer responsive to chemotherapy. She is in bed for most of the day. She develops several episodes of lower GI bleeding and has had several transfusions in hospital. She wonders if she needs to continue the transfusions.
There is now a treatment decision (on-going transfusions or not) so you proceed to begin goals of care discussions with Ms. Picone. You want to help her make a treatment decision that reflects her goals, priorities, values and wishes.
What are the outcomes of a GOCD:
Learn more about GOCD >
- Ms. Picone (+/- her SDM) has a good understanding of her illness and her treatment options.
- You have explored Mrs. Picone's goals, values and priorities.
- Any treatment or care plan is based upon good illness understanding, good understanding of treatment options and aims to aligns with the person's goals and values.
Anaya is a 15 year old teenage with leukaemia. Her parents are her decision-maker, however, Anaya is also involved as she is considered a mature minor. Her health care team explain the likely outcomes with treatment and without treatment. The team also explains the risks, benefits of chemotherapy to her and her parents. Based on this information, Amaya and her parents gives consent to proceed with chemotherapy.
Learn more about consent and capacity >
Mr. Alma is a 75 year old gentleman who was recently diagnosed with advanced metastatic cancer.
His health care team engaged him and his SDM (son) in a goals of care discussion (GOCD) to explore whether to pursue a tissue biopsy and obtain a tissue diagnosis.
During the GOCD, Mr. Alma and his son gain a good understanding of the medical information as well as the reasons for and against having a biopsy.
Based on all this information, Mr. Alma decides against a tissue biopsy as he does not value attempting to prolong his life with treatment for his cancer. Therefore, biopsy is not done. Instead, he pursues care that focuses on his comfort.
Meet Althea, Bob, Tran, Jacob and Priya
These examples will be used throughout the website.
Learn more about...
- How to identify SDM(s)
- How to appoint Attorney for Personal Care
- About substitute decision making
- What makes a good SDM
- What is capacity
- General resources
- Primary care resources
- Long term care resources
- Acute care resources
- Specialist care resources
Hospice Palliative Care Ontario gratefully acknowledges the support of the government of Ontario in the creation of Advance Care Planning resources