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A Terrible Burden…Or a Sense of Pride?
Have the Conversation That Makes the Difference
By Dr. Susan Tolle
Give Each Other the Gift of a Tough Talk
Yes, it’s difficult to talk to your parent or loved one about end of life issues. But not nearly as difficult as the burden that could be left on your shoulders if you never have that talk. Choices about life-sustaining treatments can be agonizing for family members – even tearing some families apart – if the patient’s wishes have not been made known. It is quite a different story if you have sat down with your loved one and discussed treatment options. Your burden lightens considerably if you know those procedures they want and those they don’t want, and have turned their wishes into legal documents, including Physician Orders for Life-Sustaining Treatment (commonly referred to as POLST) if they are frail or have advanced chronic illness.
Our research shows that those who know their parents’ wishes have a much easier time when it’s time to decide whether to stop treatments. The informed adult children don’t wake up at 2 a.m. wondering if they did the right thing, because they know they asked for what their parent wanted.
The Kids are Often the Ones Who Drag Their Feet
What may surprise you is that it’s not the aging parents who have the most trouble bringing up the subject; 90% of the time it’s the adult children who want to avoid it. When the parents try to start the conversation, it’s not uncommon for their son or daughter to say, “Oh, you’re going to be around for a long time. We don’t need to talk about that now.” You do need to talk about it now. And it may be hard. And it may make you sad. But when the time comes to put your parent’s wishes into action, it will be much easier on you if you know with certainty that you’re acting as an advocate for your parent.
Conversation Starters can Help
Regardless of who’s feeling the most reluctant, you can find a way to ease into the conversation. Many people find that talking about a media event involving end of life issues can be an ice-breaker. Terri Schiavo’s story broke open a taboo subject and started people talking. Every few months or so, a famous person makes – or doesn’t make – end of life decisions that are covered in the media. “What did you think about that person’s situation? Would you have also wanted to leave the hospital at that point to die at home?” A friend or family member’s death experience might also be a way to broach the subject: “How did you feel about Aunt Betsy’s decision to continue chemo? What would you have wanted?” If your parent absolutely refuses to talk about it, you might want to call in a third party such as a doctor, a palliative care specialist, a spiritual advisor, a trusted family member or friend.
When the Doctor is Tongue-Tied
Sometimes, you may find that even the doctor is reluctant to talk about end of life issues. Some never received training in medical school. Doctors see themselves as healers, and for some, discussing end of life care feels like giving up, even though that’s not the case. A small percentage of doctors are not willing to write a Do Not Resuscitate (DNR) order or to stop some medical treatments once they’ve been started. On rare occasions, it may be necessary to change doctors if those values do not line up with your parent’s wishes.
Getting it All on Paper
Once you’ve had the talk, make sure you fill out the legal forms and have your parent sign them. Keep in mind that you may need to update them periodically, especially the POLST, which should be kept as current as possible.
And while you’re at it, if you haven’t filled out your own advance medical directives, take care of those now while you’re healthy and able to make your preferences known. This one simple act will lift a tremendous burden for your own children in the future.
Dr. Susan Tolle is the Director and Cornelia Hayes Stevens Chair for the Center for Ethics in Health Care at Oregon Health & Science University. She received her medical degree from the OHSU School of Medicine and her training in Internal Medicine at the University of California, San Diego. Dr. Tolle completed her fellowship in Clinical Medical Ethics at the University of Chicago.
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