When illness causes parent-child role reversal

Jan 26, 2014

At the beginning of life, parents generally take care of children. But later in life, many adult children find that they become the ones who must take care of their parents. Whether that transition happens suddenly or slowly over the years, it can be difficult because the roles parents and children have played for decades are reversed.

This week on “Take Care,” Dr. Leana Wen, an emergency physician and director of patient-centered care research at George Washington University, discusses some of the things adult children should keep in mind as they become caregivers.

Click Read More to hear our interview with Dr. Wen.

Dr. Wen experienced this situation in her own life when she was a medical student and her mother was misdiagnosed for a year, with what turned out to be metastatic breast cancer. Dr. Wen used this personal story as an inspiration to write the book, "When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests."

Dr. Wen says she was not prepared to become the caregiver for her mother when she became ill, nor was her mother prepared to become a patient. Like Dr. Wen, many sons and daughters also find they suddenly have to talk to their parents about medical issues they are not used to discussing with them. And more importantly, children may not be accustomed to helping their parents make decisions or making decisions for them.

That’s why Dr. Wen says it’s so important for parents and sons and daughters to have a conversation about what the parent’s wishes are should they suddenly have an acute illness or be diagnosed with a terminal disease.

“I would encourage everyone, no matter your age, to have a discussion with your parents about what would you want to do,” she said.

If you are a caretaker to your parents, Dr. Wen recommends you don’t try to go it alone. Make sure you have people you can rely on to help make decisions, or even act as a mediator between you and your parent if disagreements arise. Dr. Wen says family members, like the other parent and your siblings, should be involved. Also, a health care provider who is trusted by the family – like a primary care doctor or a nurse – can be very useful to include in health discussions.

But as a family member, can you have access to the patient’s medical information, even with today’s privacy laws? Dr. Wen says, yes, as long as the patient agrees.  She calls HIPAA, the Health Insurance Portability and Accountability Act, “probably the most misunderstood law” in medicine.

“[I]f the patient says, ‘sure you can talk about it,’ which is what I see in 99.999 percent of the cases, you as the family member can absolutely discuss with the doctor.”

And, Dr. Wen says, not only is it important as a patient caregiver to have information about the patient, but to help provide doctors with information. She says it is absolutely critical that doctors have accurate and truthful information. So, Dr. Wen says, adult children should not feel they are overstepping their bounds by telling their parent’s doctors something additional or different than their parents do.