How to base your Advance Care Plan on what matters most to you.
This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.
It can be difficult to understand how Advance Care Planning conversations are helpful to in-the-moment health-care treatment decisions — for you, your family and friends and your health-care team.
You may think:
I’m not sure what medical treatments I would or would not want in the future because it depends on the situation.
How will anyone know what to do if I am not specific about treatments I would or would not want?
It’s not easy. Life is unpredictable. Illness is unpredictable. Recovery is unpredictable. The good news is that you don’t need to have all the answers.
Let us review and remind ourselves of the purpose of Advance Care Planning:
“The point of beginning advance care planning conversations … is not to force premature decisions about possible therapies, but rather for patients to identify a [substitute decision maker] and articulate their values that others can later apply to in-the-moment decisions.”
The following stories illustrate the importance of these conversations, and how they are put into action in health care:
A well-known and respected palliative care physician, Susan Block, found herself unable to have Advance Care Planning conversations with her father, even when he was in the hospital for surgery to remove a mass growing in his neck. Eventually, the night before his surgery, she gathered the strength to ask her father:
“I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.”
Photo courtesy of Getty Images.
Her father’s response:
“Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive.”
The value of this conversation proved critical. The surgery had complications and the surgeons approached the daughter. To save her father’s life, they would need to proceed with further surgery, but the chance of paralysis was high.
Photo courtesy of Getty Images.
She had three minutes to decide, and in that moment, her instinct was to let him go. Then, she remembered their conversation about what was worth living for, and she knew she had to ask: If he survived the second surgery would be he able to eat chocolate ice cream and watch football on TV?
The answer — yes. She consented and the surgery was performed. Eventually, her father regained his ability to walk short distances, partial use of his hands and full cognition — he went on to write two books and several scientific articles.
Never underestimate the power of telling people what matters most to you and how it could impact health-care decisions that others may need to make on your behalf.
Knowing how you want to live gives the people who matter most to you increased confidence for those decision-making moments.
A woman was hospitalized with symptoms caused by heart disease. Following investigative tests, the cardiologist discussed treatment options. The year before, she’d had surgery for blocked arteries. She felt she had recovered alright, but never quite got back to her “old self”. It was harder to walk long distances and her energy was low.
Photo courtesy of Canva.
When the cardiologist suggested another surgery — with a lengthy recovery expected — she was hesitant. She talked over the options with her family and friends and members of the health-care team. One of the nurses asked her to think about and share what gave her life joy and meaning. She shared that food was something she cherished. She enjoyed cooking for herself and others. Entertaining was something she couldn’t imagine not doing.
An informal, impromptu meeting occurred in her room later that day. The nurse happened to walk in when people were visiting, and she was encouraged to share the conversation they had. Her family and friends were very aware of her gift and interest in cooking and entertaining — they had been benefitting for years, they said. When the nurse suggested a discussion with the cardiologist about whether the surgery would allow her to continue living her life in this way, all were in favour.
The patient spoke with the cardiologist, who assured her she would be back to cooking and entertaining following a few months of rehabilitation. Her family and friends offered to support her recovery. She had the surgery.
*Story of a nurse from British Columbia.
Sometimes when we are unwell, we are overwhelmed with the thought of more treatments and unsure what life will look like. When we think about the treatment in the context of what makes our life meaningful and whether we will be able to do those things, it often helps us decide. The focus is on the outcome, not on the treatment.
A man living with dementia moved into a long-term care facility. In earlier years, he had cared for his father after he’d had a stroke. He perceived that his father had a poor quality of life following this health event. As a result, he decided that he would not wish for aggressive medical interventions for himself, should he be in a similar condition.
Before his dementia diagnosis, he had communicated his Advance Care Plan to his adult children, capturing his values and preferences for care. He stated that his preferences for end-of-life care were comfort and to not die in the hospital.
Six months later, his health declined rapidly. He was found unresponsive and determined to have had a stroke. One of his two adult sons requested their father be transferred to the hospital. The other son disagreed.
A family meeting was held, and the man’s Advance Care Plan was reviewed. It was decided that he would stay, and he died in the long-term care facility with both sons present shortly thereafter. Both sons later expressed that they were at peace with their father’s end-of-life care knowing his wishes for comfort were honoured.
*Story of a social worker living in British Columbia.
There are times when being more intentional and detailed is helpful for in-the-moment decisions.
Our experiences in life often guide what decisions we will make for ourselves.
Documenting our values and preferences provides our family, friends and health-care providers with a critical point of reference for important decisions.
One of the gifts you can give your family and friends is engaging with them in Advance Care Planning conversations before you have a health event, so they are prepared for making health-care decisions on your behalf, should the time come.
Some people are very clear on health-care treatments and interventions they would or would not want. Sharing what is important to you and how you want to live your life is equally valuable to in-the-moment decision-making.
Reflecting on what brings us joy and even creating a Joy List (see podcast in the Get More Information section) can be an effective way to help you begin discovering what matters most to you, and how your friends and family wish to live.
Thank you for the opportunity to write about Advance Care Planning. I’m hoping you have found these articles helpful!
Over the last two decades, Cari Borenko, BA BSW, MHS, has contributed to the Advance Care Planning (ACP) movements in Canada, New Zealand, Singapore and Japan. Presenting at conferences sponsored by ACP-international, Singapore Ministry of Health and Agency for Integrated Care, Health Quality and Safety Commission New Zealand and ACP Canada, has provided Borenko the opportunity to share her experiences and learn about international initiatives.
In her roles as ACP Lead Manager at Fraser Health Authority in British Columbia, founder and chair of the Canadian National ACP Community of Practice of Educators and an appointed member of the National ACP Task Group, Borenko has championed the development, implementation, delivery and evaluation of ACP policies, systemic processes, educational resources and promotional materials for Canadians. She is proud to be leading a trailblazing six-member ACP team with a focus on systems level implementation.