Without any written instructions or clear communication about wishes, family members often have a difficult time making decisions about end-of-life care.
Susanne Leigh (name changed for privacy) believed she knew what her mother wanted at end-of-life. Her mother had a debilitating chronic illness that caused extreme pain, and she wouldn’t want to be kept alive at all costs. Already hospitalized, her mother went into cardiac arrest, and because she hadn’t left any instructions, the hospital revived her, intubated her, and used interventions to keep her alive.
The family gathered to discuss options with healthcare providers. While the consensus was that it would be better to stop the interventions and let her go peacefully, Leigh’s sister insisted her mother told her that she wanted to be kept alive, no matter what. Without anything in writing outlining her wishes and with such strong opposition from one family member, Leigh’s mother remained in the hospital, unconscious, for months before passing away.
“It was such a difficult time; she never regained consciousness and didn’t have any quality of life for those long months,” said Leigh. “It caused a rift in our family as we couldn’t agree on what mom would have wanted; it was heartbreaking to visit and see her that way.”
After many months, the hospital physician and a social worker sat down with the family and explained that their mother would never get better and that letting her go would be a kindness. The family agreed, and their mother died shortly after.
There are many stories like this that highlight the value of advanced care planning. April 16 is National Advance Care Planning Day, to raise awareness that having a plan and discussing it are so important.
START THE CONVERSATION
Maggie Schulz is a Patient Partner with Island Health, working on Advance Care Planning topics with the organization. “It’s important to talk about what you want for end-of-life care,” said Schulz. “Speak with your friends, family and your physician so everyone knows your wishes.”
Schulz went through the process when her husband was reaching the end of his life. “My husband was very ill, and he created his advance care plan before he could no longer communicate. He discussed it with his doctor and put it in writing, then carried his plan with him so that no matter where he was, healthcare providers would know what he wanted,” she said. “It gave him great peace of mind to know that his wishes would be carried out.”
According to Advance Care Planning Canada, “Advance care planning is a process of reflection and communication, a time to reflect on values and wishes, and to let others know your future health and personal care preferences if you are unable to consent or refuse treatment or other care.”
Advance care planning may include thinking about information about treatments that you do or don’t want to have (such as CPR or mechanical ventilation), as well as other information about your care at the end of life (for example, religious rituals, being able to see a family member, dying at home or in palliative care, etc.).
STEPS TO CREATE A PLAN
Advance Care Planning Canada offers an easy-to-follow five-step guide to create your plan, along with workbooks and prompts to help articulate your wishes.
Five Step Guide:
- Think about what is most important to you—your values, wishes and beliefs.
- Learn about different medical procedures and what they can and can’t do.
- Decide on Substitute Decision Maker—the person who will speak for you if you can’t speak for yourself.
- Talk about your wishes with friends, family, and healthcare providers.
- Record your wishes in a letter, video, or audio recording.
Your advance care plan can now be attached to your electronic health record so your wishes are known throughout Island Health. Talk to your health care provider about adding this information to your record.
No one knows what lies ahead. Whatever your age or state of health, having an advance care plan is the best way to ensure your wishes are carried out. It is also the kindest thing you can do for your friends and family, so they don’t have the difficult task of making decisions for you.
HELPFUL RESOURCES
Advance Care Planning Canada: advancecareplanning.ca
Island Health: islandhealth.ca/our-services/advance-care-planning/advance-care-planning
Government of BC: https://www2.gov.bc.ca/gov/content/family-social-supports/seniors/health-safety/advance-care-planning