11. How Patients See Home Health Aides – The Aide (or Patient) as Bully
Continuing the theme of Concerns and Issues with home health aides, I would like to talk in this post about bullying.
A very frequent complaint that I hear from people who are disabled, both temporarily and chronically, is that they sometimes feel bullied by the people around them. This can be family members, friends, doctors, even strangers and very often the people they see the most frequently, their home health aides.
What is perceived as bullying is often well-meant but badly implemented assistance. This is particularly true when the aide infantilizes the disabled person because they believe the patient cannot make good decisions for themselves. The aide may push certain foods on the patient, pick out their clothes, try to get them up, bathed and dressed and put to bed when the aide wants, not when the patient wants. When the patient has trouble communicating or tends to be passive, this is more likely to happen. Certain aides may have more assertive personalities and look at themselves as the boss. Bullying can also happen because the aide and the patient have different ideas about how and when things should be done.
It should be noted that bullying can also work in reverse. Some aides are timid and passive and are more likely to be bullied by the patient or family. In this case, the aide can either speak up (“this is not on my task list” or “I’m not permitted to do that” or “there isn’t time left on my shift to complete that, today”) or ask for the agency for help.
What can be done by the patient who feels bullied? Preferably, the time to deal with bullying is when it first happens. If there were such a thing as “patient training” one would want the patient to learn to say: “Thank you, but I’m not ready to get dressed,” or “I’m used to picking out my own clothes,” or even “I didn’t understand you. Please say that again slowly.” If the patient isn’t able to do this comfortably, family members or friends can be enlisted to help, but ideally it should be the patient, calmly and repeatedly, insisting on their right to live as they wish to.
If the aide is truly bullying, this may require intervention by the health care agency. It may be a cultural issue or a personality issue that demands a greater authority to control. The patient, family or agency needs to make it clear to the aide that the patient has the right to make certain decisions for themselves, as long as it doesn’t violate the patient’s safety (or the aide’s) or require the aide to violate the law. Making decisions for the patient based on the aide’s convenience is not acceptable or appropriate and this has to be spelled out.
Ideally, it should be enough to inform the aide in a polite but firm manner that certain decisions must rest with the patient. There may, of course, be some aide-patient dyads with personality conflicts that are irreconcilable. In this case, it would be best for both parties for another aide to be sent.