Making your wishes known about end-of-life care helps ensure those wishes
“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 to 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?
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 provides a sample advance care directive form with questions to consider.
Another source is the
Conversation Project, 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
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.”
(This story originally appeared in OC Catholic, April, 2017)
To learn more about advance care directives, see
6 Tips for Creating an Advanced Directive.