Everyday Ethics takes a deeper look at the options we have when confronted with disability-related dilemmas that present more than one potential resolution. Often when a conflict is involved, our first impulse is to act solely in our best interests, because where disability is concerned, lack of awareness can lead to misunderstanding, misrepresentation of our real needs, or outright bias. But viewing these situations through a lens that weighs multiple viewpoints fairly can result in a more satisfying, lasting outcome for all involved — and that is the purpose of this column.
How Responsible is a Caregiver for the Choices of His Employer?
Q. I’m a caregiver for a C6-7 quadriplegic who has been living interdependently for about 10 years. I’ve been with her going on two years, and a week ago something happened that has caused me great concern. I’m not certain I did the right thing.
Claire had a doctor’s appointment that morning, so we started off with a shower, a routine we do regularly. While I was bathing her, she unexpectedly listed to one side, had to be supported, and suddenly seemed uncharacteristically weak. I even thought she might pass out. We were near the end of the shower, so I helped her get upright and into bed as quickly and carefully as I could. Usually she does what she can to help, but this time she lacked the strength.
Once in bed, she told me this sometimes happens when her bladder drains all at once and her blood pressure drops, but she still looked woozy and weak. I had never seen her like this before. She went on to say that she just needed to get something to eat and take a pill and she would be fine. But I couldn’t help thinking that had I not been there, she would have fallen off the shower seat. This especially concerned me because she was planning to drive herself to the doctor’s office, and her usual routine is that after she has been helped into her van, she drives herself; then when she arrives at her destination, she waits for someone to help her. I’ve seen her do this many times, but never in this condition. I couldn’t help imagining all kinds of dangerous scenarios.
I told her I would be happy to drive her to the appointment for no charge. She said all she needed to be safe to drive was food and a pill and I need not worry. By now she was in a hurry to get there on time. I repeated my offer to help, but she declined again. I asked her to look me in the eye and tell me she was OK, but she wouldn’t, and even made a joke about it.
After she took her medication and ate, I helped her into the car, giving more help than usual. She was slightly better but still looked weak. I felt guilty about letting her go, but I had to do what she wanted. I couldn’t force her to let me drive. As it happened, she got there OK and returned without help, and nothing happened. But I’ve been feeling guilty that I didn’t do more. Did I handle the situation properly?
Is there something else I could have done? What if it happens again?
A. Your concern is certainly warranted, and the questions you bring up are worthy of careful consideration. This might be an appropriate time to look at your duties and responsibilities as a caregiver through a broader lens.
Independently functioning wheelchair users who hire caregivers often consider them to be personal attendants since their duties are mainly involved with helping, not overseeing or managing (as is the case with some elderly or cognitively impaired persons). Claire’s purpose in employing you is most likely to maintain her independent lifestyle. But there is an unspoken ethical responsibility that each of you will do well to consider. While your duties may seem mundane, the well-being of your employer is a legitimate concern of yours. When independent living — often based on an interdependent relationship — is absent any concern for well-being (on the part of both parties for one another), it can resemble a dry routine that lacks deeper purpose, and at times may feel cold and mechanical. The best relationships are built on a careful balance of mutual concern, trust and respect for boundaries.
That said, it is vitally important that your concern for Claire’s well-being must never cross over into obsession or paternalism. She is the expert when it comes to matters of her health. However, you can be a kind of backup presence. For instance, she knows the signs and dangers of potential pressure ulcers, but she may not be fully aware of certain parts of her body. The two of you must have a prior understanding of how you may be able to help. The scenario involving weakness and low blood pressure is a similar matter. Now that it has happened, this is a good time to ask for further direction on how to proceed should it happen again.
But what if her behavior indicates she is not fully aware of the potential danger? There is a fine line between respecting her autonomy and voicing legitimate concerns about her decision-making when her physical health may be at risk. It is not unusual for anyone, disabled or not, to downplay their need for help, whether out of pride, denial or momentary lack of objective judgment. In this case, your dilemma was especially difficult because Claire seemed to know how to handle this situation, and even said that she had done so before, while at the same time your senses were giving you a conflicting impression. Bottom line: She had the right to exercise her will, both as an individual and an employer. But you were right in bringing up your concern.
Did you go too far? Perhaps. Repeatedly questioning her may have verged on paternalism, but you did the right thing by giving in to her judgment. However, that might not be the best course of action if it happens again. In this instance, three things happened that most likely influenced your final decision, perhaps subconsciously. She did what she said she must do — eat and take medication; she joked about the situation; and she showed improvement, however slight. In other words, she was on the right track.
But what if she had passed out and had an accident en route to the doctor’s appointment? Or what if no one had come to help when she arrived, or she had fallen in the process of getting out of her car? In discussing how to handle future incidents, you could suggest that she might call ahead, tell them she will be late, then rest until she is better.
Still, the question of what causes the weakness in the first place remains unresolved. Is it your place to mention this? Respectfully, you might suggest that you take her blood pressure at times when similar weakness shows up; the two of you could then discuss what to do with that information. There are a number of potential causes of sudden low blood pressure. Besides urological issues, it could be related to her medication, or there might be a link to dehydration. Whatever triggers this condition, the best outcome of all would be to pinpoint the cause, perhaps with help from a doctor, and take action to correct it.
Whatever you do, know that your responsibility is to help, not manage, always with her well-being in mind. This kind of approach will not only relieve your guilt, but be of valuable service to Claire — and the end result will be a strengthening of your relationship.
Send your ethical dilemmas to Tim Gilmer at firstname.lastname@example.org.