When Tina Burton’s father, Bill, was diagnosed with cancer, the man who had rarely taken Tylenol was suddenly inundated with medical jargon and urgent recommendations.
He did not understand why he was being referred for frequent chest x-rays when his cancer was in his bladder. He was equally puzzled when a prescription for antidepressants came with no conversation at all about his mental health.
Doctors later explained to Tina their concern that the cancer was spreading, and that he was showing signs of depression. But at the time, her father was confused and frustrated: “They just want to feed me more pills and make more money.”
A recent survey by the University of Michigan Institute for Healthcare Policy and Innovation found that Americans between the ages of 50 and 80 often leave appointments with more questions than answers.
This kind of confusion is not unusual. A recent survey by the University of Michigan Institute for Healthcare Policy and Innovation found that Americans between the ages of 50 and 80 often leave appointments with more questions than answers.
Saying yes when you want to say no
The study showed that 16 percent of patients surveyed had been offered prescriptions and diagnostic tests they believed to be unnecessary. Yet a full 50 percent of those patients consented to the services anyway.
Many patients are leaving the exam room with an incomplete picture of what their doctor is recommending and why. This can lead to neglected health issues on one hand—or redundant, costly services on the other.
Caregivers can help.
At first, Tina had begun accompanying her dad to his cancer appointments for transportation and moral support. But when a later diagnosis of Parkinson’s disease began to slow his mental processing and threaten his independence, she sensed a greater need to help him communicate with his doctors.
She started by bridging the gap in trust: Call him Mr. Burton, not Bill. Address him, not me, she advised doctors. Don’t repeat questions—he heard you the first time, but he needs a moment to process things.
“At times they would ask me a question about how he was feeling,” she said. “I would have to say, ‘I don’t know, you would have to ask my dad about that,’ until they finally started asking him.”
That helped him be more open to their input, she said.
A difficult but critical role
Caregivers find themselves in the position of facilitating conversation between their loved one and a provider for a variety of reasons. Sometimes the diagnosis comes with symptoms like dementia or impaired speech that make communication difficult. Sometimes it comes with a threat to independence that might make it risky to mention difficulties. Sometimes a generational or cultural gap is in the way.
The National Institute on Aging has some helpful guidelines for caregivers hoping to make each doctor visit as pleasant, honest and productive as possible:
- Bring a list of questions and concerns. This includes the ones the patient has, the ones you have, and the ones any other family members or caregivers have mentioned. They might all be different, but together they can give the doctor a clearer picture of who she is treating.
- Bring a list of all medications and supplements the person is taking, whether prescription or over-the-counter. Make a note of the dosage and frequency, or bring the bottles themselves so you have that information from the labels. The doctor may not know what others have prescribed or purchased outside of her advice.
- Respect the person’s privacy, and leave the room when necessary.
- Ask about some helpful resources in your community. They may know of classes, support groups or other programs that can help you and your loved one take better care of yourselves.
Advice from someone who’s been there
As someone who served in this role for not just her dad, but also a grandmother with dementia, Tina has her own advice from the trenches.
- Do a little legwork before the visit. Call ahead and ask what the appointment will entail so that you can properly prepare your loved one. Also prepare the provider by offering any information about the patient that will help things go smoothly: Does she need large-print material? Will he need to tell an old war story to build rapport? Does she bristle at being called honey or sweetie? You can provide this to the office staff upon check-in, or ask when you make the appointment how to best get it into the provider’s hands.
- Understand and respect generational differences. Consider taking your notes on paper instead of your smartphone, as some older people find it disrespectful to be “playing on your phone.”
- End doctor visits on a high note. If each trip to the neurologist is followed by a stop at a favorite barbecue spot, it becomes less of a chore and more of a treat.
Tina said that since her dad’s death, those barbecue lunches are among her sweetest memories of him. She relished the quality time with the man she described as a “funny and very emotionally giving” dad, someone who had talked her through schoolyard bullies and a tough start at college.
“To be so capable and strong his whole life, in the end it was hard,” she said of the lifelong carpenter, who had started working with his own dad at age 10. “His whole identity was being able to swing that hammer,” she recalled. “When he couldn’t do that anymore, it was really hard. He was always the protector, but then it was my turn to look out for him.”