My Care Recipient’s Doctors Don’t Respect My Boundaries

A reader feels pressure from medical personnel who want her to take on a larger caregiving role

Barry J. Jacobs,

AARP

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En español

Published May 06, 2025

A collage with a caregiver being overwhelmed by images of demanding medical personnel, drugs and medical equipment

Vidhya Nagarajan

Editors asked AARP Family Caregivers Discussion Group members and other caregivers to submit pressing questions they’d like family therapist and clinical psychologist Barry Jacobs to tackle in his caregiving column. Jacobs took on this hot-button topic:

How do you get a loved one’s doctors to respect that you can’t do any more for a loved one who lives with you? They don’t respect boundaries, and they always expect caregiver families to do more and more.

Barry Jacobs: Your question reminds me of a family I worked with in the early 1990s during a 70-year-old husband’s stay in a rehabilitation hospital unit while recovering from a debilitating stroke. Because his wife visited him daily and attended all his physical and occupational therapy sessions, his treatment team assumed she was a devoted spouse determined to help him return home. But when we asked her if she would learn transfer techniques to care for him upon discharge, she kept repeating, “I don’t know.” We ignored this warning, interpreting her hesitation as lack of confidence, and pressed her to try caring for him at home. Reluctantly, she agreed.

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A week and a half later, the social worker on our clinical team received a phone call from the county’s Elder Protective Services department: Within days after the husband returned home, his wife had abandoned him. It seems she couldn’t tolerate caring for the man who had victimized her throughout their marriage with his alcoholism and physical abuse. After the police found him lying on his bedroom floor, where he had been for days, Elder Protective Services moved him to the county nursing home to receive custodial care, likely for the rest of his life.

This is an extreme case with a tragic outcome, but it illustrates a few of the tendencies that, even 30 years later, many doctors and other health care professionals still have.

Health care professionals typically focus with myopic intensity on treating individual patients, not families. They usually appreciate family caregivers’ efforts to support patients to help them achieve their clinical goals. Still, they regard exploring family caregivers’ life circumstances and limitations as outside their purview and beyond their time constraints.

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Because they generally don’t make the effort to really know family caregivers, let alone conduct formal assessments of their backgrounds and needs, physicians and other providers rely on quick impressions to size them up. The family member frequently seen in the exam room during outpatient visits or at the bedside during a hospital stay is thought to be someone to be counted upon to do their utmost for the patient.

As occurred with the wife of the man who had the stroke, health care professionals may be blind to signals that family members send. Unless family caregivers are loud and clear about what they can take on, the health care team may forge ahead blithely, indifferent to those caregivers’ concerns. Caregivers can wind up feeling dehumanized — mere cogs in the clinical treatment plan who are supposed to administer meds, drive to appointments, handle insurance forms, report progress, and never waver or protest.

As the family caregiver, you get to determine what you are willing, able and available to do for a care receiver; the doctors need to conform to your plan, not the other way around. If they subtly or overtly criticize you because you won’t fulfill all their expectations, it is normal to feel angry at them. How can you assert yourself and garner more respect from them? Here are three essential steps.

Seek a true partnership

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“To be effective, it is important for the physician to develop positive working alliances with both the patient and other family members,” said Susan H. McDaniel, Ph.D. and her colleagues at the University of Rochester, in their seminal 1990 book, Family-Oriented Primary Care. In their model of family-oriented medical care, doctors don’t call the shots about the treatment plan; patients ultimately do (if they can) with the input of their doctors and caregivers. As partners working together to support patients, family caregivers don’t work for doctors; they work with them.

How can you make this happen? It largely depends on how you frame your role as a family caregiver. It’s not a good idea to attend your care receiver’s medical appointment, introduce yourself to the physician, and then sit silently awaiting instructions. From the outset, it is far better to say something like, “Nice to meet you, Dr. Smith. I’m Barbara’s daughter, and I look forward to working with you to help my mother manage her condition so she can remain at home.” The first is a position of compliance; the second, of camaraderie.

State your limits

Consider the doctor’s suggestions for a treatment plan as a well-informed wish list, not a set of commands. To be implemented and helpful, those suggestions must fit within the context of family caregivers’ busy lives. It is, therefore, crucial to state what you can do, both verbally during a care receiver’s medical appointments and in an email or online portal message afterward.

For example, Dr. Smith might say, “Your mother will need lab work done tomorrow.” You could then respond, “Unfortunately, we have a plumber scheduled to come to the house tomorrow, and then I need to go to my part-time job. Can this wait?” There is almost always some wiggle room with requested medical tests. You are also entitled to question, “Mom had lab work last week. She hates getting stuck with needles. Is it absolutely necessary for her to go through that again?”

Hold the line

Some physicians may become flustered by your responses and even push back. They may say that their request is a matter of clinical necessity. You must clarify if that is indeed the case. If not, you could say politely but firmly, "I hear your preference, doctor, but also that it is not clinically vital to do it exactly that way. Because of my schedule and other obligations, I will need to put it off for several days but will ensure the patient gets the test as soon as I am able to take her."

Doctors will learn to respect you as an active, engaged, assertive partner helping shape and implement the care receiver’s treatment plan.

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Barry J. Jacobs, a clinical psychologist, family therapist and health care consultant, is coauthor of the upcoming book The AARP Caregiver Answer Book, scheduled for release on July 9, 2025. For more information, visit aarp.org/bookstore. Follow him on Twitter and Facebook.