“There is a deep cultural aversion to talking about dying,” says Dr. Ira Byock, founder and chief medical officer for the Institute for Human Caring of Providence Health and Services in Torrance. “There is almost a superstition that if you talk about dying, you’re inviting it into your lives.”
Yet by discussing our wishes for what happens as we approach the end of life, we can drastically increase the chances that our dying will actually play out as we hope, says Dr. Byock, who is a palliative care physician and active professor emeritus of Medicine and Community and Family Medicine at the Geisel School of Medicine at Dartmouth.
Do you want spend your last days at home or in the hospital? Do you want a spiritual leader at your bedside? Do you want to be given pain medication so that you’re comfortable? If you’re in a coma and unable to make your own medical decisions, who do you trust to make decisions for you?
April 16 is National Healthcare Decisions Day, designed to raise awareness and encourage families to broach end-of-life subjects.
Starting the conversation
Talking about death and dying with family members can be awkward, but it doesn’t have to be.
“Conversation starters can be as easy as, ‘Hey Mom, I read this interesting article in the Orange County Catholic that says every family should do advance care planning,’” says Dr. Byock.
Topics to cover include burial or cremation, organ donation, the use of dialysis or CPR during the end stage of life. The Institute for Human Caring website (providence.org/institute-for-human-caring) provides a sample advance care directive form with questions to consider. Another source is the Conversation Project (theconversationproject.org), which offers conversation prompts and topics to cover in many languages.
“Illness is highly personal,” says Dr. Byock, “so ‘the best care’ is not just the state-of-the-art treatment, but includes highly personalized attention to each patient’s worries, priorities and deepest concerns, as well as concerns of their family.”
His hope is that the subject becomes commonplace. “We want to normalize these conversations.”
Who should get a copy of your advance care directive?
Experts recommend that you keep an original, signed copy of your advance care directive, and send a copy to your doctor and hospitals in your area.
Dr. Byock also suggests scanning the document and sending a PDF version to family members who are likely to get “the call” should you be in a serious car accident or suffer a stroke or sudden heart attack. By having a signed advance directive on the computer, a family member can email it quickly to an emergency department doctor anywhere in the world.
“This is such a great support to your family,” says Dr. Byock. “By eliminating any question as to who has the authority over your final care decisions, family members will not be forced to speak to a hospital ethics committee or go to court to be granted decision-making authority,” he says.
How often should advance care directives be reviewed?
Advance care directives should be updated throughout a person’s life. Dr. Byock, suggests using these five D’s as a reminder:
Every decade of life;
When someone dies, and these topics are on everyone’s mind;
When there is a divorce or other major life changes;
When someone is diagnosed with a serious condition;
When a person grows older, more frail and his or her health starts to decline
Why it’s so important
To witness a loved one experience the end of life just as he or she wishes is a long-lasting gift. The Institute of Human Caring has partnered with StoryCorps© to record people sharing their stories on this topic, in a project called “Hear Me Now” (providence.org/hear-me-now).
“At the Institute for Human Caring, we recognize the emotional, spiritual, social, interpersonal realms of our personhood,” says Dr. Byock. “While using medicine to help us live longer and better, we also want to bring attention to helping people live as well and as fully as possible in all realms of their human condition.”