Overattentive caregivers can undermine patient recovery.
Karen Roberts of Alexandria, Va., had only good intentions when she agreed to be a caregiver to her friend Carole, who received a diagnosis of throat cancer in spring 2012. Roberts joined her friend in a rented apartment in Baltimore and took care of her daily needs while she was treated with chemotherapy and radiation at Johns Hopkins Hospital.
At first, Roberts says, her friend was a bit reluctant about having a caregiver.
“She did not think she needed a caregiver, but her son insisted,” Roberts explains. “While Carole is a very kind person, I could feel some reticence from her, initially. We had to settle into our roles of patient and caregiver. I wouldn’t say that I was overbearing, but I would say that I had to learn that everyone handles treatments and stress differently. I learned to back off a bit until she really needed my help. I also learned to recognize when to push an issue and when not to push.”
Roberts’ willingness to step back and let her friend be herself made Roberts an effective aide. However, many caregivers try to control the situation to the point of becoming overbearing, and that can have an adverse impact on the patient’s treatment and recovery, experts say.
“Overbearing is when you don’t allow patients the room they need to accomplish the things they want to accomplish,” says Timothy J. Moynihan, an oncologist at the Mayo Clinic in Rochester, Minn. “The motivation may be pure and positively driven, but the caregiver may want to take over and not let patients answer questions or do anything for themselves out of fear that patients may harm themselves or stress themselves too much.”
Emotions Push Behavior
Caregivers become overbearing for a variety of reasons, says Iris Cohen Fineberg, president of the Association of Oncology Social Work. Some are controlling by nature, while others become that way because of their circumstances.
“Of the root emotions that can push people into this kind of behavior, fear is a really big one, though it may not be obvious,” Fineberg says. “As a caregiver, if I’m scared of what’s going to happen, I’m going to find a way to control it and make it better the best way I can. It’s a fear of what the cancer may do.”
Guilt can also be a contributing factor, Fineberg says. For example, if a loved one smoked heavily and later developed cancer, the family caregiver might feel guilty about not having done more to prevent it. Taking control of the situation and ensuring the patient adheres to treatment becomes “a way of making amends,” Fineberg says, adding in most cases, these are unconscious or subconscious processes.
“For the most part, people are not aware that these feelings are driving their actions; it’s just what is happening for them. The feelings are deep inside.”
Occasionally, cultural or religious beliefs can lead a caregiver to become controlling. “We know there are cultures with more prescribed patterns of who makes the decisions, of who has power in the family,” Fineberg says. “For some people, having the caregiver make all the decisions might be the most comforting and normal thing that they can imagine, and it would be distressing to them if that didn’t happen.”
Although overly controlling caregivers can be wellintentioned, their behavior can have a negative effect on the patient’s treatment and recovery. In some cases, an overbearing caregiver might make the patient anxious and uncomfortable with the trajectory of care, as well as rob the patient of a sense of independence, says Rachel Cannady, a behavioral scientist with the American Cancer Society.
An overbearing caregiver can also impair communication between the patient and the medical team, Moynihan says. This is especially true when the caregiver speaks for the patient without truly understanding the patient’s feelings. For example, the caregiver might tell the care team that the patient tolerated chemotherapy well, when the patient actually found the treatment difficult and doesn’t want to go through it again. “If the caregiver answers all the questions for the patient, you don’t get the true picture of what the patient wants,” Moynihan says. Patients “have to have their own voice.”
A controlling dynamic might ultimately force patients to take sides, Fineberg adds. “Are they going to be loyal to the caregiver or to the healthcare team, let alone themselves? You may have a situation where a sense of obligation to the caregiver leads to negative outcomes, and the patient ends up protecting the caregiver.”
Most overbearing caregivers are unaware of their behavior. However, caregivers can ask themselves questions like these to determine whether their behavior needs adjusting:
What Patients Can Do
Patients are sometimes reluctant to confront a controlling caregiver because they don’t want to appear ungrateful or hurt the caregiver’s feelings. “The ultimate goal is open communication,” Fineberg says. “One thing that can help is to speak in ‘I’ statements, in which the patient talks about how a particular behavior makes him or her feel. For example, ‘When you talk for me, I feel like ....’ No one can argue against a feeling you have, and it connects a behavior to that feeling. That helps people make connections they may not have made before the conversation.”
It also helps when patients reassure their caregivers that they are valued and appreciated, which creates a positive start to the conversation. Then, the patient can explain what would be more helpful in the future. “It’s not blaming anyone,” Fineberg says, “because the conversation is really framed around what the patient needs.”
If necessary, patients might want to ask their physician or other care provider to act as a mediator, Moynihan says. “The caregiver has to be part of the care team, but the patient is the final arbiter, and we have to support his or her decisions and process,” he says. “If we have to take sides, we will side with patients and sometimes protect them from their family.”
The patient’s social worker can also be an effective advocate. “Social workers often work with patients, families and healthcare teams to facilitate communication and to better understand situations from a variety of perspectives,” Fineberg says.
Through clear communication, Karen Roberts turned what could have been a rocky caregiving experience into one that was beneficial to her and her friend.
“Let patients have as much independence as they’re able to tolerate,” Roberts says. “I learned to listen to what my friend wanted and needed, as opposed to what I thought was best for her. I became a better caregiver, a better advocate for her with the healthcare system, and I learned to better appreciate the needs of my friend.”
> Caregivers should ask if their behavior could be hurting the patient.
> Patients are often reluctant to confront a controlling caregiver because they don't