Talking openly about end-of-life wishes with a loved one can bring everyone peace of mind. Here’s how to create an advance care directive.
Rita Shahi thought her father’s cancer was gone. So when Shahi had to rush him to the hospital because of painful abdominal bloating, she wasn’t prepared to face the cancer’s recurrence or to have a conversation about his wishes for end-of-life care. Decisions were made quickly. “There was no time to think about it,” Shahi says. “It was handled in chaos.”
Shahi’s father passed away in 2011. After that painful experience, she knew she would have a conversation about end-of-life planning with her mother, a resident at Mercy Retirement & Care Center in Oakland, California. “We weren’t going to go through that again,” she says.
Janet Thompson, Director of Sales and Marketing at Mercy, says she meets too many people who haven’t discussed what they or their loved ones want when it comes to end-of-life care and that’s why she joined The Conversation Project, a national movement dedicated to helping people communicate and document their health care wishes in an advance directive. She also speaks regularly about how to plan for end-of-life care.
Talking About an Advance Care Directive
Having these conversations helps family members stay on the same page and not have to make hard choices in the middle of a health crisis, like Shahi and her family had to do. Getting legal documents in place, such as an advance directive, a durable power of attorney and a living will, can help keep arguments at bay and often alleviates guilt for other family members, says Thompson.
She acknowledges that these can be tough conversations to have and suggests bringing up the topic a little at a time. Start the dialogue by asking questions such as, “When you think about the last phase of your life, what’s most important to you?” and “How do you define quality of life?”
Make sure to discuss any particular health concerns, how involved loved ones should be, what kinds of aggressive treatments are acceptable, and when it would be preferable to shift from active treatment to palliative care.
End-Of-Life Wishes: An Ongoing Conversation
It can help to remember that nothing is set in stone. “These things are fluid; they change over time,” Thompson says. “You shouldn’t expect to have the conversation all at one time. You just want it to become normal to talk about.”
Think about other areas of health. Many people visit the dentist every six months and a doctor every year. Add rethinking legal directives and advance care planning documents to the rotation and revisit the plan with your loved one every three to five years—more often if there is a big health concern.
When Shahi’s mother passed away in November 2014, it wasn’t complicated or dramatic—it was calm and peaceful. “Even though the loss was difficult, it was good to have had that conversation about her wishes,” she says. “It made it easier in the long run.”
To start a conversation with your loved ones, Thompson recommends these guides:
- Values Checklist and Guide: My Choices Near the Ending of Life
- Your Conversation Starter Kit, with permission from the Coalition for Compassion Care of California