The Empowered Patient: How to Protect Yourself From Hospital Errors
Julia Hallisy recently sent me her book, The Empowered Patient (PatientsafetyCA.org, 2008). It is at once one of the most pragmatic and one of the most moving health care books that I have ever read.
Hallisy's daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation. Kate died in 2000. She was eleven years old.
Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient's advocate needs to know about how to stay safe in a hospital.
First she reminds us of the mind-boggling number of errors that occur in our hospitals every year. "As many as 95,000 people die annually" as a result of adverse events ranging from infections to fatal drug reactions. It's hard to grasp just how many people are dying until Hallisy gives us what she calls "a tragic reference point." The number of lives lost to medical error is roughly equivalent to a World Trade Center attack occurring every two weeks during the year.
Hallisy's 300-page book is eminently readable, and filled with enormously useful detail. As she points out "the media and the government do try to warn us against the dangers we are up against with admonitions such as, 'Make sure all your healthcare providers wash their hands before touching you,' or 'Don't sign blanket consent forms,' or 'Check your medication ... '
"Good advice," writes Hallisy, "but what exactly are you supposed to do to ensure that these things actually happen? Many of you reading this right now don't know that you have a right to customize your consent form."
I certainly didn't.
Hallisy and her husband learned how to keep their daughter safe the hard way. Although Kate was treated in some of the finest hospitals in the San Francisco area, "During all those years of interacting with physicians and hospitals, I encountered virtually every problem a patient and their loved ones can face ... My husband and I became more savvy and educated the longer my daughter's illness went on. As we progressed, we slowly came to realize that the quality of healthcare she was receiving, as mediocre as it sometimes was, was actually far superior to the care other families around us in the hospital were receiving. They began to notice this discrepancy as well, and they wanted to know how we knew the things we did and who had given us such valuable 'inside' information. We had to explain to them that we had come across everything we knew ... by watching our daughter suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating the mistakes and taking steps to make sure they didn't occur again."
Begin with the consent form. It turns out that if you want to be certain that you know who will be caring for you while you are in the hospital, you should look carefully at the "Terms and Conditions of Service" on your consent form. It may well say:
"Attending physicians may be assisted by medical students, interns, residents and postgraduate fellows during the care of each patient. The patient agrees to treatment by these persons while under the direction or supervision of the attending physician."
Hallisy explains that "direction" and "supervision" have distinct meanings. If the attending physician is "directing" that only requires that he be available for questions. When "supervising," by contrast, he should be physically present and personally overseeing the proceedings.
Of course residents need to practice on someone. Hallisy is not recommending that you "refuse all outright care by medical residents." But she is suggesting that you "not give away blanket permission for inexperienced or unsupervised medical personnel to take care of your health care when a lot is at stake." [my emphasis]
Instead, she advises altering the form to read: "Patient agrees to treatment by residents and interns on an individual basis on an informed consent basis. Patient expects such persons to be under the direct and daily supervision of attending physician." Then be sure to initial the change.
The first sentence ensures that you will meet the residents "who will be writing orders and making health care decision -- sometimes behind the scenes. This gives you a chance to find out a little about his or her level of expertise and to judge whether this person seems competent to treat your condition."
Hallisy points out that if you or a loved one are going in for surgery, and you want to make sure that your surgeon is actually performing the procedure -- or at least that he or she will be in the room -- you need to take a close look at the "Authorization for Surgery' portion of the consent form.
She offers a disturbing example of what can happen if you don't. At one point, her daughter's oncologist wanted to rule out a possible metastasis of the cancer to her other leg. "Kate was scheduled for a biopsy on her left femur, and we were immediately referred to a particular physician because he was a specialist in pediatric bone tumors." After the biopsy was completed, that surgeon appeared in the doorway of the waiting room. He was dressed in scrubs, his hair and shoes were dressed in the protective paper coverings used in the OR, holding up a specimen jar with a piece of bone floating in a clear preservative liquid. He assured Hallisy and her husband that "this is not cancer. I know what osteosarcoma looks like, and I don't feel that this is what it is."
Months later, they discovered that he had not operated on their daughter. "Two residents had cut into my child," says Hallisy, recalling her rage when she discovered that they had been deceived. Given how sick Kate was, and how important the surgery was, I sympathize completely.
The Hallisys had no legal recourse because they had not looked carefully at the line in the consent form which said: "I authorize ____________________M.D. and any other physicians he/she may designate ... "
"Remember," Hallisy points out, "residents and interns are physicians. If you want a particular surgeon, you should cross out 'other physicians' or 'associates' and insert 'only' in front of your surgeon's name."
In some cases, of course, you may not mind if an associate performs the surgery. A few years ago, my husband snapped his Achilles tendon while playing tennis. He went to a NYC hospital with a world-class sports injury clinic. The doctor he chose for the surgery operates on the New York Giants when they are injured. It was only after the procedure was over that my husband found out that a resident working with the doctor actually did the job. The famous surgeon was in a different room, operating on someone else.
My husband was miffed. No doubt someone should have told him that an associate would be doing the operation. But the truth is that he was disappointed because he liked the idea of telling people that his surgeon was the team physician for the Giants!
Because my husband is in excellent health, and the surgery was not life-threatening, I wasn't terribly upset. He was probably better off having a resident chosen and trained by a world-class surgeon than a more experienced, but mediocre physician. In any case, he came out of the surgery without even a hint of a limp. So it's worth keeping in mind that the students of a great physician may be better than the average physician. Still, you should be told who will be operating on you. And you should ask how many similar operations they have done.
If you do decide to customize your consent form, make sure that when you sign it, you insert "with alterations" to "I have read, understood and agreed." And then inform the hospital staff that you have made changes. Your alterations are effective only if the hospital staff is aware of them.
Hallisy acknowledges that "It is entirely possible that a hospital will find your alterations to a consent form unusual, but never forget that you are allowed to do it. It can end up being the impetus for a meaningful communication between you and your doctor."
She adds that you should talk to your doctor about your concerns and any plans to alter the form well before the surgery. "Have a frank discussion with your physician to lay out your expectations if you want him or her to be present for, and personally direct, all aspects of the surgery. Ask outright if a resident will be performing any part of your surgery and what the experience level of the resident is."
Generally, Hallisy stresses: "There is very real power in having, and stating, expectations." You don't want to become involved in confrontations after-the-fact.You do not want to be labeled a "difficult patient." But you do want to make your concerns known before something happens.
For example, when talking about how to guard against picking up an infection in the hospital, Hallisy writes: "don't wait for staff to members to breach protocol and then jump on them. Avoid awkward situations by announcing your concerns to staff well in advance of the start of the procedure ... I always found it helpful to put the onus on myself by saying something like 'I just don't feel comfortable unless everyone wears gloves.'" A practicing dentist, Hallisy understands how dangerous infections can be, and how important it is that caregivers follow protocol down to the detail.
Sometimes technicians need to un-glove, she points out -- to feel for a vein, for example. But make sure they take the time to prep their hands again before inserting a needle into your flesh.
One might assume that nurses and hospital staff will be good about constantly washing their hands -- after all, we have known for more than a century that this is key to hospital safety. But the fact is that even very good hospitals often are understaffed and nurses are rushed. Studies show that at teaching hospitals, as few as a third of physicians and nurses may be complying with hand-washing standards. Yet Hallisy notes, "patients are hesitant to say anything because they don't want to seem to be suggesting that hospital staff aren't 'clean.'"
She offers a simple solution: "When our daughter was ill, we taped an eye-catching, easy-to-read sign to the door of her room. Using colored paper, we wrote 'PLEASE WASH YOUR HANDS AND WEAR GLOVES AS APPROPRIATE' in large, black letters ... The increase in compliance was so immediate and so dramatic that the infection control specialist made her own signs and placed them on the doors to all of the rooms in the pediatric oncology unit."
Urinary catheters -- which drain urine from the bladder -- are another common source of serious infections. People who pick up urinary tract infections are far more likely to incur kidney or blood stream infections. "Too often, inserting a catheter is looked upon as a routine procedure," Hallisy warns, "but it should be seen as a last resort if the patient is conscious and able to the walk to the bathroom unassisted." If a catheter must be used, try to make sure that it is removed as soon as possible. Studies show that doctors often forget that their patients are catherized, and so don't write timely orders to have them removed. It's up to you, or your patient advocate, to remind someone that you no longer need the catheter.
If you have any serious concerns about your care, Hallisy advises reading your chart so that you know whether your doctors are on the same page. In one case, an orthopedic surgeon failed, for five days, to diagnose and treat a raging abscess in Kate's biopsy site. He insisted that the site was not infected -- and not the cause of a larger infection that had become life-threatening.
Only later, when the Hallisy's read Kate's records, did they discover that some of the other doctors were as alarmed as they were. "The other doctors were extremely reticent about coming forward with their own concerns," she explains. "If we had looked at their notes in the chart, we would have known immediately which doctors shared our opinion and we could have pressed them to take a stand." (Hallisy also explains how she later went to the hospital's Patients Relations Department to receive permission to review medical records as they were being written.)
These are just a few of the hundreds of pieces of practical advice that Hallisy offers about how to stay safe in a hospital.
Let me be clear: Hallisy is not "anti-doctor" or "anti-nurse." She understands how easily errors can occur and is particularly sympathetic to "the unrelenting fatigue, stress and chaos experienced by new doctors." She also praises first-year residents who "to their credit, seem well aware of their lack of experience and do not regard the fact that they may need more guidance as a personal or professional failure."
As an example, she points out that "in 1998, the residents at a major San Francisco medical center negotiated to postpone their pediatric oncology rotation until their second year of residency. A resident I spoke to stated that they simply weren't confident that they were ready to handle the complexities of medical oncology case management. After their complaints, the pediatric oncology rotation became part of the second-year curriculum, not the first year. We should applaud these beginners who ... were not willing to put their own careers ahead of public safety."
This book is not an expose. But ultimately, The Empowered Patient frankly acknowledges that U.S. hospitals have become hectic, potentially dangerous places. And you do have a right to feel safe. As Hallisy puts it: "Your need to feel safe is not self-indulgent. You have a right to expect a reasonable degree of safety. In fact, where else should you expect to be safer than in a hospital?"