Before the end: Advance Care Planning
When Eleanor Walters looks at photographs of her dad at her daughter’s 2013 wedding in Costa Rica, it brings her great joy.
“This was a very happy day for him, and the rest of my family,” she says.
It wasn’t easy to get him there. He had recently fallen in his home and broken his hip. He’d been living alone since his wife (and caregiver) died unexpectedly a few years before. His mobility was limited, but he had talked to his family about what was important to him as he neared the end of his life, and they knew they he truly wanted to go.
“Dad had always been fiercely independent and proud,” Eleanor says. “However as he aged he had become more frail and needed more assistance to stay at home. He was always a bit of the “strong silent” type, so I was not sure how we might have any conversations with him regarding advanced care planning. We actually did not just sit down one day and decide to talk about end of life care, but rather we gathered snippets of information from more casual conversations. That gave us information about what things that were important and supported a good quality of life for him.”
Understanding his values
His family knew that one of those things was attending his granddaughter’s wedding, no matter how far away it was.
Peter’s health had been complicated for a number of years. His colon was punctured during a colonoscopy, and it made him very ill. He had to be resuscitated in hospital. The broken hip that followed his wife’s passing prompted his family to move him to a retirement home. But he itched to go back home.
“His words to me were, ‘it is better for you if I am here in the retirement home, but it is not better for me!’”
That exchange prompted them to discuss what was important to him as he aged. Peter made it clear that he wanted to live independently, even if he was at risk for falls.
“He would accept that risk in order to be the master of his own domain,” says Eleanor.
They made arrangements for him to return home with additional support from his family and the community. They continued discussing his health and what he might want as time went on.
A collection of conversations about Advance Care Planning
“Although we did not talk frequently about death and dying, we spoke enough for me to know what was important to my father, what things he valued.”
Peter went on to fall twice more, breaking his hip each time. He was able to return home after the first surgery, but the second time he suffered a massive stroke. Eleanor and her siblings knew that if he survived, he would be completely dependent and unable to live alone. They thought back to the conversations they had had with him and knew he wouldn’t be okay with that outcome.
“We felt like we had made the decision he would have made”
“Knowing his previously expressed wishes, we were able to make decisions for him, as we believe he would have, if he had been able to speak for himself,” Eleanor says.
When the time comes to speak for someone else
She and her brothers changed their father’s status to Allow Natural Death, meaning he wouldn’t receive artificial resuscitation if his heart stopped beating. He died n the hospital shortly after with his family by his side.
“It was Dad’s time,” says Eleanor. “We felt like we had made the decision he would have made if he were able to speak for himself.”
April 16th is Advance Care Planning Day. Take a look at the resources below and start a conversation with your loved ones.
Planning for end of life: Have the conversation before it’s too late
Clinical and organizational ethicist at Hamilton Health Sciences, Sandra Andreychuk shares information about advance care planning.
What is Advance Care Planning?
Advance care planning is about reflecting on and communicating personal care preferences. The goal is to help your loved ones understand your wishes in case you become incapable of making medical treatment decisions.
People often find it difficult to talk about death and dying. These fears may prevent us from engaging in advance care planning. The process doesn’t have to be scary though. There are lots of resources available to assist in these conversations.
What do you need to talk about?
Two of the most critical components of advance care planning are identifying a substitute decision maker (SDM), and communicating your wishes, values and health preferences with them.
What is a substitute decision maker?
An SDM is an individual chosen to make medical decisions on behalf of another person if they are unable to do so for themselves. It’s a difficult role. To make an SDM’s job easier, it’s important that you share your health preferences with them while you are capable. That way, they will have a very clear idea of the choices you would make for yourself.
Discussing the information below with your substitute decision maker may make it easier for them to make health care choices on your behalf:
• What do you value most in life and that brings joy to your day?
• What would you want your health care team to know about you that will help to determine your medical goals of care?
• How important is it to be able to eat and would you want a feeding tube to provide nutrition if you are not expected to regain your ability to take food by mouth?
• Would you want a breathing tube if your lungs or heart began to fail?
• Should your heart be restarted if it begins to fail?
• Where would you want to live if you can no longer care for yourself in your own home?
Communicating your wishes and health preferences will make a SDM more prepared to answer many questions on your behalf if they need to.
How do we determine the Substitute Decision Maker?
The Health Care Consent Act provides a ranked list of people who can be the patient’s SDM. The person who is highest on the list, who is capable, willing, and available to act as SDM should be approached for healthcare decisions.
•the incapable patient’s guardian, if he/she has authority to give/refuse consent for treatment; i.e. court appointed individual or agency
•the incapable patient’s attorney for personal care (POA), if he/she has authority to give/refuse consent for treatment
•the incapable patient’s spouse or partner
•the incapable patient’s child or parent (or Children’s Aid Society or other lawfully entitled person able to give or refuse consent for treatment in place of the parent. Note: If the Children’s Aid Society or other person has this authority, the parent is not included in this ranking.)
•the incapable patient’s parent who has only a right of access
•the incapable patient’s brother or sister
•any other relative of the incapable patient
The Office of the Public Guardian & Trustee addresses situations where there is no willing and available SDM, or there are 2 or more equally ranking SDMs who disagree regarding a decision for a patient or where they have been appointed by the courts.
What is the difference between a SDM and Power of attorney for personal care (POA)?
A POA is a person identified by the patient, in writing, as their decision maker for personal care, should they become incapable. They are the first ranking person in the list of substitute decision makers. If there is no a court appointed SDM, and the patient has not identified a POA, then an SDM is determined using the ranking order above.
Are you prepared to be a substitute decision maker?
When someone becomes an SDM, it is important for them to consider the person’s previously desired wishes and to act in the best interests of the individual. Substitute decision makers should ask themselves the following questions to ensure they are acting on the wishes of the person they’re deciding on behalf of, not on their own wishes.
• Do I understand what’s important to my loved one?
• Do I know their health and personal care wishes?
• Am I willing to communicate those wishes, even if they aren’t what I would choose?
• Am I able to communicate clearly with healthcare professionals and ask questions?
• Can I make difficult decisions, even during stressful times?
• Do I know the legal requirements of my roles as a substitute decision maker?
If you have questions about advance care planning for yourself or a loved one, speak with your family doctor or hospital care team, or connect with Advance Care Planning Canada.