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"I know family caregivers have a hard time,” said the young family physician. “Let me set you up with our social worker and get you a brochure about our hospital's monthly caregiver support group."
Sandra felt surprised and pleased that this doctor conducting her annual physical somehow knew she was caring for her husband with Parkinson's disease. She hadn't brought it up but figured he must have read it in her electronic health record that he stared at on his computer screen through most of their time together.
She also was slightly taken aback, though, by his forwardness. He hadn't asked her a single question about her caregiving experience and yet he assumed that it was “hard” and that he had the right advice for her. Sandra was a shy person who hated being in groups where she might be asked to talk. And she wasn't eager to meet with the social worker, who probably would dispense more advice that didn't quite suit who she was or how she and her husband lived. She knew they meant well, but she just wanted someone to listen to her rather than offering the exact same help they gave every caregiver.
Health care and social service professionals have an important role to play to support family caregivers and direct them to resources such as support groups, home health agencies, adult day programs and respite care. But if they don't first take the time to ask about who the caregiver is, their advice can miss the mark. They know a lot about illness and something about caregiving but aren't the experts on what any one family caregiver needs. That caregiver is. If that caregiver is like shy Sandra, however, she will quietly take the brochure and the social worker's phone number on the way out of the office because she's too polite to tell the doctor his suggestions aren't helpful for her.
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How can family caregivers respectfully challenge health care and social service professionals to do a better job of listening to them? Here are some ideas:
Develop a partnership
No one goes into the helping professions without a sense of mission about improving others’ lives. But sometimes professionals confuse being an expert on a topic they've studied with being an effective partner and guide to the individual caregiver in front of them. Express your appreciation for what they know but communicate you also value their willingness to work with you to help you figure out your right course.
Come to meetings prepared with questions
Nothing so fixates the attention of a primary care provider as the sight of a yellow legal pad filled with questions in the hands of a caregiver sitting in a medical exam room. Because the professional is so anxious to get through the visit in a time-efficient but also satisfactory manner, he will want to immediately address your questions to get them out of the way. (He may even grab the pad out of your hands to scan the questions himself.) This can be your opportunity to teach the provider a bit about yourself and what matters most to you so that the suggestions he makes are pertinent to you.
Ask about options
There are few situations in health care for which there is only one right answer. There are nearly always alternatives, each with its pros and cons. When a nurse, social worker or physician pronounces definitively what you should do, ask for the full range of options to consider by saying, “Are there other ways of approaching this problem that I should think about?” You may momentarily put the provider back on her heels but she will then stop merely directing you and instead collaborate with you on weighing the various possibilities.
Think twice before you dismiss advice
Few encounters irk providers more than the caregiver who asks for help but then seems to reject all professional suggestions out of hand. After several expressions of “No, that won't work,” most providers will clam up out of frustration and end the visit as quickly as possible. The goal is instead to establish a dialogue in which you and the professional are drawing on her knowledge and your store of experiences to hash out a plan together. Central to that discussion is what matters most to you in the vital work you are doing. When family caregivers and eager, responsive professionals are focused on that, they make a powerfully effective team.