We've discussed measuring your own arm and using that measurement to know which cuff size you should use, and how to buy your own cuff if needed. We've shared some of our own miscuffing stories, and discussed how miscuffing seems to be particularly common in pregnancy and can lead to many unnecessary interventions if not caught.
Today, in the last of the series, we're going to talk about overcoming resistance from healthcare workers about miscuffing, and being proactive healthcare consumers if miscuffing occurs.
Miscuffing General Guidelines
Using the wrong blood pressure cuff size is actually pretty common. That's why it's so important to measure your arm size and know which cuff you should use. Basically, the guidelines are:
- if your arm is over about 13.4 inches (34 cm), you should be using a "large" adult cuff
- if your arm is over about 17.7 inches (45 cm) or so, you should be using a "thigh" cuff (although the cuff range in this size is less standardized and you should read the range on the side of the cuff each time)
- if your arm is over about 20.5 inches (52 cm), you need a special-order cuff size, which you can get from http://www.amplestuff.com/.
Research is VERY clear that fit is NOT the critical issue; length and width of bladder is.
Chances are that if you are significantly "overweight" or "obese" or if your arms tend to be larger/heavy, you probably need the large cuff. Supersized people often need the thigh cuff. So generally speaking, you can probably guess at your cuff size. But really, it's best to know your own arm size (in centimeters!) so you can be sure which cuff size you need.
Resistance from Healthcare Workers
Research from the latest NHANES survey of the American population showed that 42% of all men and 26% of all women aged 40-59 years (which is when hypertension often starts to show up) required large BP cuffs.
You would think that this would mean that doctor's offices and hospitals would routinely carry large cuffs and that healthcare workers would automatically get the larger cuff when needed, wouldn't you?
But no, miscuffing seems to be a pretty common experience among people of size. Anecdotally, many have more than one miscuffing story to share. It is probably more common than most medical authorities realize.
Unfortunately, it can be difficult to convince some healthcare workers to use the appropriate cuff, despite years of research on the topic. Sometimes this is just simple ignorance or improper training about the difference cuff size can make. Sometimes, though, the resistance goes deeper than mere misinformation or ignorance.
Some doctor practices don't own a large cuff in order to save money or because they haven't really thought the matter through. It's not that they are trying to discriminate; it's more a matter of cutting corners on a tight budget or simply not even thinking about cuff sizes.
[But frankly, if this is true of your doctor's practice, you should be questioning whether you should even be going there. A large cuff (and a thigh cuff!) should be standard equipment for every practice; if it's not, it shows the practice is not very aware of important issues for people of size. If you have a choice, find another, more size-friendly practice.]
Some healthcare workers will tell you that the large cuff is "broken" or "out for repair" or "can't be found." Sometimes this might even be true.....but often, it's an evasion to hide the fact that the practice hasn't bothered to buy a larger cuff, or to hide the fact that they are too lazy/busy to go find the larger cuff.
Mind, staff members are often overworked and very busy; hospitals in particular tend to understaff their wards these days. You can understand why an overworked nurse or medtech might not want to take the time to go find the large cuff or the thigh cuff hidden in some obscure cupboard somewhere.
But it doesn't matter. That's their job. They NEED to get the most accurate measurements possible because all your treatment decisions will be based on these numbers. Even if it is inconvenient, it is critical that they use the correct equipment for the job.
Sometimes medical workers will say things like, "cuff size doesn't make that much difference at your size," or "as long as the cuff goes around your arm it'll be fine," or "a forearm reading is just as good"----but none of these stand up under closer investigation.
Cuff size really does matter and often makes quite a bit more than a "couple of points" of difference.....sometimes it can make 50 points or more difference. And it's not whether the cuff goes around your arm, it's whether the bladder inside the cuff is the right proportion to your arm. Furthermore, while a forearm reading can do in a pinch, it tends to overestimate blood pressure and should not be relied on unless there truly is no other choice (and then only on an occasional basis).
All of these are merely excuses.....unacceptable excuses.....for trying to get away with using the wrong equipment. Don't let them con you into acquiescing; insist on the correct equipment for the job every time.
What If Miscuffing Happens To You?
If the wrong blood pressure cuff is brought out for you, the best thing to do is to politely refuse to have your blood pressure measured at all. You don't need to be confrontational about it since it's helpful to maintain a good relationship with the staff, but you do need to be politely firm about it.
Remember, invalid data on your permanent record is worse than no data at all. Insurance workers may determine your eligibility for life insurance or health insurance or other programs based on reviews of your medical files; a spuriously high reading may impact your ability to get insurance (or cause you to have to pay more). Better not to have a reading on there at all than to have a spuriously high one.
Taking a blood pressure is a medical test like any other, and you ALWAYS have the right to refuse a test. You don't give up your rights when you walk through that clinic door; you always have the option to decline testing.
Of course, no one is advocating that you avoid blood pressure readings, just that you make sure that the data is accurate.
If they do not have the equipment needed, you are completely within your rights to refuse such a test. Just tell them politely but firmly that you would be happy to have your BP taken....once the correct-sized cuff is located. Until the correct cuff is available, tell them you choose to exercise your right of informed refusal.
Documenting and Protesting Miscuffing Issues
What if a healthcare worker refuses to let the issue go? What do you do?
First of all, try to educate them. Most healthcare personnel are genuinely in the profession to help people and are open to learning how to better serve special populations. Educate them about the need for the proper-sized cuff and how much miscuffing can affect BP readings. It may simply be a matter of not realizing how much difference cuff size can make.
Most of the time, a little polite education and persistence will be enough to eventually bring about the right cuff for the job. However, sadly, occasionally personnel refuse to listen or even indulge in bullying or manipulative tactics.
Medical bullying is real, and occasionally healthcare personnel can get very unpleasant. Just remember that you cannot be compelled to take a medical test against your will. Keep telling them calmly but firmly that use of an incorrectly-sized cuff gives invalid data and you will be happy to have your blood pressure taken when they use the correct cuff.
Use the phrase, "I do not consent," because this phrase has a stronger impact with medical personnel. Also remind workers that patients always have the right to informed refusal of any medical procedure or test. Make it clear that you do not object to taking the blood pressure itself, but that you refuse to have it taken with incorrect equipment because it will result in invalid data. Offer to sign an "informed refusal" form if needed.
If this is not enough, you can ask to see the healthcare worker's supervisor and share your concern. Request that another worker be assigned to you; this kind of request is actually not that unusual and supervisors are often able to accommodate such a request.
Ask a friend or a loved one to act as spokesperson for you if you are feeling poorly or find it difficult to communicate effectively or assertively. Having another voice there can make all the difference in the world when you are ill or find it difficult to speak up for whatever reason.
If you still find that medical personnel are unresponsive, ask to see a Patient Advocate. Most hospitals have one. Tell them that you have concerns about your needs being met as a person of size. Share with them the importance of using a large blood pressure cuff, and about resistance you have met.
The job of the Patient Advocate is to help represent your needs and to advocate for them. Because they have a recognized voice and role within the institution, they often have a great deal of influence and may be able to get needs met that might otherwise get ignored.
Registering a Patient Complaint
Being firm and assertive sounds all well and good in principle, but realistically, it's not always easy to be assertive in these situations, especially when you are feeling sick and vulnerable. Many people (including me) have been bullied into taking the BP with the wrong cuff, despite our protests. What then?
Don't be a silent victim. Even if you have been "convinced," manipulated, or downright bullied into taking a BP with the wrong cuff, it's not too late to try and change that behavior for yourself and for others in the future.
Document the experience and write a letter of complaint to the healthcare worker's supervisor. Be polite, no matter how upset you are; calmly recount what happened and cite research that shows how undercuffing can inflate blood pressure. Close by giving them a clear way to meet your concern; ask them to make sure a large cuff and thigh cuff are available at all times, ask them to re-train their workers on the importance of correct cuff size, etc.
Often, medical supervisors will be very responsive to this type of letter. The trick is to be polite, document your concerns with corroborating research, and to give them a concrete course of action to remedy the problem. You can also encourage responsiveness by forwarding a copy of the complaint to insurance or supervisors further up the management chain of command.
I wrote a letter of complaint like this several years ago after the urgent-care experience I wrote about previously, where the nurse conned me into a "science experiment" to see "if the large cuff really made any difference or not" (it did; 50 points of difference, but the erroneously high reading was still recorded in my chart).
I wrote a letter documenting the experience and sent it to the supervisors of the facility and my insurance. The supervisors immediately apologized to me, promised that a large cuff would be purchased for the facility, and promised that the staff trained on the importance of its use. I've been back to that facility since then, and they indeed did have the correct cuff (and used it).
Because of that experience, I developed a handout that can be sent along with a letter of complaint, documenting blood pressure cuff size guidelines and citing research on obesity and cuff size. It is available on my website, here, and I have given permission for it to be used for this purpose. Feel free to make use of it if you need it.
Some fat people (especially women) may feel guilty about being assertive like this. After all, women are often raised with the idea that "good girls" are always polite, always please others, and never complain. Also, as fat people, we are often taught that we don't deserve good treatment, that our needs and desires don't matter, and that it's not our place to question medical authorities. Some have been taught to be too embarrassed by the size of their arms to draw attention to them by demanding the right cuff.
But think about it. They are asking you to take a test with improper equipment, the inaccurate results of which could ultimately result in harm to you. You are completely within your rights to refuse testing under these circumstances, to advocate for the proper equipment, and to complain if medical personnel are not responsive to your concerns.
Don't feel that improper blood pressure technique is too trivial to complain about; if personnel are using incorrect technique or equipment to take blood pressure, sooner or later someone is going to be harmed by that. The mistake needs to be pointed out and corrected.
You are doing yourself a favor by insisting on correct equipment, but not only that, you are doing a favor for every fat person who comes after you.
Step up to the plate and be ready to advocate if needed.