Protecting Yourself (Or a Loved One) in the Hospital

Julia Hallisy recently sent me her book, The Empowered Patient (, 2008).  It is at once one of the most pragmatic and one of the most moving healthcare  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

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: “Patients 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

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
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

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?"

15 thoughts on “Protecting Yourself (Or a Loved One) in the Hospital

  1. Nice post. On this topic, I think we’re in agreement =).
    I would add one thought. Currently, the cost incurred by the hospital to, say, conduct your husband’s Achilles’ tendon surgery is calculated based on allowing residents/fellows to carry some amount of the work load. So, if a patient is going to demand that a particular attending physician must personally conduct the surgery from opening to closing, he or she should be required to come up with the difference.
    To not fairly compensate the hospital/physician for monopolizing his/her time is unfair to other patients who are paying the same amount for less personal attention from the specialist.

  2. I’ve certainly learned by watching my wife suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating (although late) the mistakes and taking steps to make sure they didn’t occur again. However, she did have world-class surgeons for all of her needed surgical procedures, and were absolutely satisfied with them. Virtually all the nurses who had come in contact with her were the most warm and knowledgeable people, and a plethora of information. God bless all you good nurses!

  3. Tom and Gregory–
    Thanks for your comments.
    Tom– I agree that it is unfair for patients to demand a particular attending physician–unless there is a compelling medical reason.
    In my husband’s case, there clearly wasn’t.
    In Kate’s case, because she was so young, had suffered so much and was in such precarious health I think she should have had the person considered the best specailist.
    I really don’t think the world-class specialist should be paid more if someone requests him–this turns the surgeon into a very well paid servant.
    I think the surgeon himself should decide which cases need him, based on how comlicated the case is, the patient’s health, co-morbidities etc. The surgeon is in the best position to judge what is safest for his patients.
    Otherwise, very wealthy people would request (and pay extra for) the best while residents and others
    operated on middle class and poor patients.
    Health care shouldn’t be about what you can afford to pay but what you truly need.
    What kind of car you drive can be about what you can afford–that’s fine. But not healthcare.
    Gregory–I’m very glad your did find skilled surgeons and compassionate nurses.

  4. I didn’t say that a surgeon should get paid more if someone requests him. Nor did I say that if a surgeon decides that a particular patient needs his personal attention that that person should be charged more. What I did suggest was that for every person who demands a surgeon’s personal attention (as opposed to letting the surgeon decide), that person should be charged more.
    Otherwise, we’ll have a system where everyone demands the personal attention of a surgeon as opposed to a resident (via the modified consent agreements mentioned in the original post). My suggestion was prompted by my judgment that such a system would be unsustainable giving the current set up. It’s just not possible for each and every case to be intimately managed by an attending. Residents carry a huge proportion of the load in a hospital…and they’re a great money-maker, btw =).

  5. Tom–
    I think we’re in complete agreement.
    (Btw, I finally answered your question on the other thread–had forgotten about it)

  6. I’m one of the first people to modify hospital admission requirements, but the issue of who performs a procedure is complex. In watching surgical procedures done by exceptionally good teaching surgeons with a fellow or resident, including one on my own arm that I watched under a regional block, I have seen the surgeon sometimes never pick up an instrument but constantly direct the operator, or the senior surgeon take the role of first assistant and do very careful retraction and blunt dissection to reveal the structure the resident/surgeon needed to manipulate. It was a bit surreal to be included in the conversation while my right radial nerve was being decompressed, but I know I’m weird. That probably wasn’t as weird as the time, during an experimental invasive cardiac test at NIH, when the fellow and I described my myocardial function in terms of Monty Python’s Norwegian Blue Parrot.
    While there are notable exceptions, I find I have more trouble in getting information from nurses than physicians, even if I have a chart note allowing me full access, or I have a durable power of attorney giving me that access as a surrogate.
    Vaguely, I have a sense that there is a hierarchy of information that clinicians are willing to give. Sometimes, it’s an oversimplification by mid-level staff. My primary physician’s staff have a habit of calling me when lab reports are back, and telling me “they are all fine”. Without knowing historical trends, that isn’t always an obvious conclusion.
    One guideline: as patient if capable, or surrogate, document, document, document. While some nurses push back, if there’s a matter of concern, write it up and tell the nurse to include it in the chart. Many may want to have you tell them the concern and let them write the note, but, if you have any appreciable knowledge, that’s a fine way to lose information — and it also gets into the dominance relationships of care. One of my practices, when a courteous nurse asks how I’d like to be addressed, is to ask how the nurse addresses my primary physician. If that’s first name, it’s fine with me. I do not, however, play “Doctor” and “Howard”, which gives up a certain amount of appropriate patient autonomy.
    A minor but useful point — learn a few pleasantries in as many languages as possible. In my last hospitalization, I found my hospitalist was rather unpopular. Greeting him in Arabic, and replying “insh’allah” to his prognosis, had him smiling broadly as he left my room, where he told the nurses to treat him as if I was his brother, and he were watching them closely.

  7. Howard–
    Yes, The Empowered Patient also stresses writing down any concerns and asking the nurse to include it in the chart.
    I suspect nurses may be less forthcoming with
    information because they are afraid of getting in trouble with the doctor.
    Traditionally, the power relatonship between doctor and nurse has been one that would discourage nurses from giving you a direct anwer to a question if they a) aren’t sure the doctor would want you to know or b) suspect that the doctor wants to tell you himself.
    You’re certainly right about doing everything you can to establish a relationship with hospital staff. Too often, patients are rude and treat staff and nurses as if they were servants or waiters in a restaurant. (Of course waiters shouldn’t be treated that way either, but that’s another post for another blog.)
    This book is particulary good at giving examples of how to phrase things so that you don’t seem to be implying that the person you are talking to doesn’t know how to do her job. Most likely, she does, but the way the hospital is set up may make it hard to do her job well.

  8. Good entry Maggie. Agreed the pateint should feel empowered to ask (and have answered) all the questions they want. I’d ask you to pull up slome old footage of hospitals in the 1970’s though. We’ve come a long way. I started volunteering in the early 80’s and have been in hospital’s ever since. There are much greater safety systems, check’s and double checks. On the one hand lean and six sigma have been used to improve access/velocity of healthcare but it also decrease the rate of mistakes. Staff are also more empowered to say something if they see something is wrong. In our own practice I’m sure people feel rushed at times but (because we’re in an underserviced area) they can at least get an appointment. It’s the good and the bad.

  9. Howard–
    Yes, The Empowered Patient also stresses writing down any concerns and asking the nurse to include it in the chart.
    I suspect nurses may be less forthcoming with
    information because they are afraid of getting in trouble with the doctor.
    Traditionally, the power relatonship between doctor and nurse has been one that would discourage nurses from giving you a direct anwer to a question if they a) aren’t sure the doctor would want you to know or b) suspect that the doctor wants to tell you himself.
    You’re certainly right about doing everything you can to establish a relationship with hospital staff. Too often, patients are rude and treat staff and nurses as if they were servants or waiters in a restaurant. (Of course waiters shouldn’t be treated that way either, but that’s another post for another blog.)
    This book is particulary good at giving examples of how to phrase things so that you don’t seem to be implying that the person you are talking to doesn’t know how to do her job. Most likely, she does, but the way the hospital is set up may make it hard to do her job well.

  10. After 7 recurrences of a bone cancer called chondrosarcoma with a partial amputation of my pelvis through a period of 11 years, I learned the hard way that if I didn’t speak up for myself, I didn’t get good care. Now, whether someone likes it or not I speak up. I avoid being rude, but I am insistent in getting answers or getting what I need. As patients we need to overcome the old ways. I am ordering this book tonight.

  11. I have enjoyed reading the comments on this subject and I feel compelled to add some personal opinions. I also agree that it may be unfair and unnecessary to demand or to monopolize a particular attending physician or surgeon if there isn’t a compelling reason. With current health care philosophy moving toward patient-centered care and complete transparency, I feel that substituting another surgeon after a patient is asleep is counterproductive to these noble goals. A great number of patients are referred to a particular surgeon by their primary care doctor. Many patients even seek additional consultations to find a surgeon who instills a sense of trust and confidence. The details of the surgery are explained and agreed upon, the patient signs a consent form listing the doctor’s name at the top and then after they are sedated, another doctor that the patient has never met may perform all or a substantive of the surgery. I feel that patients and doctors enter into much more than a simple agreement when deciding to proceed with surgery – it is more like a covenant. Patients have every right to assume that their surgeon will be present for the duration of their procedure. If the surgeon will not be personally directing the opening, closing or any other part of a procedure, the patient should be made aware of this. I respect other opinions that this may make the current system unsustainable because patients might never consent to be operated on by a resident. I trained as a dentist in a completely transparent system because our patients were almost always awake. There was no opportunity (or need, it turns out) to substitute another student or doctor because patients openly accepted treatment by students when they felt informed and were assured that the students were closely monitored by a faculty member. It might take a few more minutes of time (sometimes a problem in our current system) to properly introduce a resident to a patient, for the surgeon to express their complete confidence in this individual and to fully explain the resident’s experience with the procedure and their level or participation and responsibility. I know that a great majority of patients are happy to help train a new generation of health care providers as long as they feel it will be done in a safe and supervised environment. Would I allow a resident to operate on me? Yes, unless it was a very demanding or specialized surgery in which I felt that I warranted the expertise of one particular surgeon. That said, I would want to know in advance who was cutting in to my body, meet them face-to-face and ask any questions of them I may have. As to the opening and closing of surgical sites, this is often considered a “routine” part of the procedure, but there may be patients – especially those at a greater risk of infection or those who have already experienced a surgical site infection who may be best served by the surgeon personally closing the wound. Most patients assume that the surgeon on their consent form is performing their entire surgery, start to finish, and they never see an operative report to know otherwise. And while patients do seem aware that surgeons are assisted by a number of others in the operating room, they still believe that their surgeon is in charge at all times. Not being completely forthcoming about who will be performing surgery erodes the trust of the public and ultimately may harm the integrity of the medical profession.

  12. Julia’s work is profound in its scope and detail.
    As the author of a book on managing a loved one’s end-of-life hospitalization and alternative pathways (Notes from the Waiting Room), my research exposed me to many books, of which I choose two to place in the “must have” section of my annotated bibliography. When I reprint The Empowered Patient will go on the list, at the very top.
    Re: Tom’s suggestion that we ante up the difference in hospital cost allocation if we don’t want a resident operating on us (presumably unknown to us): folks, the signal problem that underscores all the medical problems is the age-old one of inadequate communication. Hospitals blather that they provide (loving) care while at the same time systematically failing to provide us virtually any information we truly need to know, before we need to know it (the smallest example being that they tell us we need to advocate for our patient-family but fail to explain why, how, or provide any support for our doing so… “family care” means your family provides the care ;). This is malpractice (as in “bad practice) and may cross the line into medical malpractice in my opinion and experience (as medical POA during my parents’ demises). This “care”/communication schism (actually, it’s “bodily repair services under the direction of independent physician-scientists”) is in itself a subset of the lack of forecasting, which altogether result in profoundly harmful, repetitive *extrinsic* shocks in addition to the intrinsic shock of a loved one down. At end-of-life, this whole scene is particularly egregious. All the more so if it *leads* near or to end of life in a non-life-threatening (I know; oxymoron) hospitalization. Bottom line for me: hospitals need to come clean in more than one sense of the phrase. We owe them no more than they try to collect until they do.
    Let’s rather talk about an unspoken aspect of cost-shifting, the costs that Julia and I have lived through and write about.

  13. My warmest thanks for Julie Hallisy’s writing this moving book and for Maggie’s brilliant review.
    I am deeply sorry for the pain and tragedy of Kate’s life and death at the hands of healthcare providers in a broken medical system. I have been an advocate and patient safety educator, who has looked for a book like Julie’s for more than five years. I can’t wait to get my copy. My next class begins March 25th at Chesapeake College,MD, and I hope I can round up enough books for my class
    members. Can you help?

  14. Bill, Bart, Julia, Ellizabeth—
    Bill– Thanks very much.
    I know that Julia’s book is available online at Amazon, Borders Barnes & Noble,, and that would be a quick way to get it for your class.
    Bart– I agree we need much better communication in our hospitals. And when it comes to end-of-life care we need more palliative care doctors and nurses. They also need to be paid better, to attract more doctors and nurses to the field.
    Typically we pay doctors who practice “thinking medicine” (listening to the patient and talking to the patient) much less than we pay docs who “do something” to the patient–cutting, slicing, radiating . . .
    In my experience palliative care docs are compassionate and wise. They can do an excellentn job of making sure the patient is not in pain while talkign to him/her about options. Laying out risks and benfits, helping the patient articulate his fears and hopes . . .
    Julia– the whole area of residents operating on patients is sticky.
    If the surgeon told every patient that the resident would be in charge–and that he might not be in the room–I wonder how many patients would refuse?
    Is that why patients often don’t know–because surgeons would never get the experience they need?
    I don’t know.
    But I do know that it isn’t just a matter of residents getting experience. The fact is that well-known surgeons have only so many hours in their day. They cannoot personally operate on all of the patients referred to them.
    Patients have to understand that. I agree with you that I would let a resident operate on me,
    but i would want to meet him/her and discuss the operation just as I would with the surgeon. And if I didn’t feel confident, I would ask to meet another resident.
    Clearly, the most experienced surgeons shoudld use their time to operate on the most
    difficult cases.
    Elizabeth–You’re right, hospitals can be intimdating places. People have to learn how to speak out–without being rude.

  15. Yes, hospitals are starting to look at true palliative teams as they scope the wave of Boomers reaching 70. Ideally, all medicine would be palliative, with various specialties appearing as subsets.
    Julia, the problem is in the system-wide not telling. I don’t wanna type so much at the moment, but the not-telling tends to make my blood boil. Actually, how *dare* “they” not tell us? If *routine* medical practice is to assign underlings to perform surgery while attributing success rates to the named surgeon, and if this practice is systemic, well by golly how about owning up to that, living past the initial outcry, coming clean with your customer base nation-wide, and moving on? Fear of marginalizing those who may not yet be qualified to operate, or given too wide a berth when operating? Some other easily imaginable parameters? In not being told, patient-families are actually violated. You seem to excuse this framework on the ground of efficiency and education.