The following excerpt is taken from the new book Help
Me To Heal: A Practical Guidebook for Patients, Visitors, and Caregivers,
by Bernie Siegel, M.D and Yosaif August. It is published by Hay House, Inc.,
and will be available August 2003 at all bookstores, by phone 800-654-5126,
or via the Internet at www.hayhouse.com
Introduction
Why You Need to Be Empowered
In recent years, weve been bombarded with stories
about how dangerous it is to be hospitalized. While we were writing this
Introduction, an issue of Prevention magazine featured a cover story entitled
"Get Out of the Hospital Alive." At the same time, newspapers
were reporting that a little girl who went into the operating room to have
her tonsils removed had eye surgery instead, while the child who needed
eye surgery had a tonsillectomy. In a major teaching hospital, two people
recently died during cardiac catheterizations because the oxygen and nitrous
oxide lines were reversed, and people across the world mourned the death
of Jesica Santillanthe 17-year-old girl who died after doctors performed
a heart and lung transplant using organs of the wrong blood type.
The news is full of horror stories about the wrong organs being removed
and the
wrong limbs being amputated. But the scariest part of the story is that
medical
mistakes happen every day. Just look at the statistics: In the United
States, hospitalization is one of the ten leading causes of death, with
ten people per hour dying in these institutions because of medical mistakes.
Maybe what we really need is a book called Help Me to Survive.
If you think that the situation couldnt possibly be that bad, be aware
that the Institute of Medicine (IOM) has estimated that as many as 98,000
people die each year due to medical blunders. In response to the IOMs
1999 report, the Joint Commission on Accreditation of Healthcare Organizations
(JCAHO) has launched a campaign with the message "Speak Up: Help Prevent
Errors in Your Care." Their brochure offers the following suggestions
on how you can avoid being the victim of medical errors. To obtain a copy
of the full brochure, call JCAHO at 877-223-6866, or log on to their Website
at www.jcaho.org.:
Ask your doctor about the specialized
training and experience that qualifies him
or her to treat your illness (and be sure to ask the same questions of those
physicians to whom he or she refers you). [If your doctor doesnt want
to answer questions, find another caregiver.]
Make sure you can read the handwriting on any prescriptions written
by your doctor. If you cant read it, the pharmacist may not be able
to either.
Understand that more tests or medications may not always be better.
Ask your doctor what a new test or medication is likely to achieve. [And
dont forget that some alternative treatments are more effective and
less risky, and are often less costly.]
There are many other questions you can ask to protect yourself from medical
errors, and they all hinge on your being empowered so you wont be
intimidated when you need to get information.
So how did hospitals get to be dangerous places? We think it happened
when medical technology began to replace care. Technology may save lives,
but it cant take the place of the consideration that one person
can provide for another. With few exceptions, doctors, nurses, and other
health-care providers are taught a lot about technology but little if
anything about how to provide personal attention. They dont learn
to take into account the patients experience, or their emotional
and spiritual issues.
Hospitals would be run very differently if administrators had to live in
the facilities they operate. We sometimes say that the fastest way to improve
the quality of care given in hospitals would be to employ only those health-care
professionals who have spent at least a week as a patient. When doctors
experience serious illnesseither their own or a loved onesthey
often become advocates for patient empowerment.
One such physician created a survival list after he was hospitalized,
and
nothing on his list came from his medical-school education. It would
be great if insurance companies gave patients a copy of the list, which
included such useful tips as, "Write on your knee: Cut here."
What if one set of parents had written "Cut here" on their
daughters forehead, above the eye that needed the operation; and
the other parents had written "Remove tonsils and adenoids
only" on their daughters chin? Those children wouldnt
have gotten the
wrong operations.
The JCAHO offers similar advice, but they go one step furtherthey
urge patients to "mark not only the site that is to be operated on,
but also the one that should not be touched." In one hospital, after
someone had amputated the wrong leg, the medical staff decided that in the
future theyd write "no" on the healthy leg. But when the
orderly writes "no" on your leg, does that mean "No, not
this one," or does it mean "This leg is no good"?
If you want to be safe, make your message clear and unambiguous. One woman
about to have breast surgery wrote, "Not this one, stupid." Her
message left no room for misunderstanding.
That same physicians survival list ended by advising patients
to be assertive, ask questions, and not worry about annoying the hospital
staff. Hes right.
Being a good patient isnt your goal; staying alive is. You want
to avoid medical mishaps, so if you sense that something is wrong with
your treatment, insist that the staff stop and verify the details. You
dont have to make headlines and be involved in lawsuitsyou
dont need to give anyone permission to take
your life.
The word hospital is derived from hospitality, but medical care today rarely
involves the latter. Any hotel manager knows how to make people feel comfortable
and safe. Why shouldnt health-care professionals know as much about
taking care of people?
***
Psychologists, massage therapists, and advertisers know that colors, textures,
sounds, sights, and aromas can contribute to our peace of mindits
a fact thats been demonstrated in scientific studies. But how many
modern cancer centers take the trouble to introduce pleasant sounds and
smells? When patients become anxious and restless during an MRI and they
cant lie still, the test has to be cancelled; the patients diagnostic
workup is delayed and the hospital loses money. A major cancer center learned
that if you play music and fill the room with a soothing aroma, patients
relax and money is saved.
Horst Schulze, the former president and COO of The Ritz-Carlton Hotel Company,
learned from his experience as a cancer patient how to improve his hotels.
He decided that his business should be to make people feel cared forthe
way he wished hed been treated in the hospital. Everyone working at
one of the Ritz-Carlton hotels is given a list of "Gold Standards"
that instructs them on how to accommodate their guests. It begins like this:
"We are ladies and gentleman caring for ladies and gentlemen,"
and it goes on to say, "The genuine care and comfort of our guests
is our highest mission."
By way of comparison, the oath of the American College of Surgeons says:
"I promise to deal with each patient as I would wish to be dealt if
I were in the patients position." Would you rather be cared for
by ladies and gentlemen, or "dealt with"? We think that when someone
is "dealing with" you, or with your diagnosis, they are more likely
to perform the wrong operation.
The hotels principles are better from the staffs point of
view, too. "Dealing with" people is much less satisfying than
"caring for" them, which may explain why its hard to
find enough nurses to work in hospitals while the Ritz-Carlton staff
has only a 5-percent annual turnover rate. We provide this list to any
hospital personnel who are interested.
***
This book is for people who are searching for informationpeople
like a young woman with cancer who wrote us recently. "I was admitted
to the hospital the day I was diagnosed," she wrote, "and
my frantic parents drove up to be with me." At the hospital, she
and her family had the kind of experience weve been describing:
The hospital staff wasnt caring for her or listening to her and
her family, so she acted like a survivor. She quickly checked out of
that hospital and found a new doctor and hospital that would provide
proper care. She started reading inspirational books, meditating, using
guided imagery, and watching healing videos that were available at the
new hospital. That young woman is on the path to healing, and shes
now thankful for the cancer that changed her life. "My illness
has opened up a door of reality that a healthy person cant understand,"
she wrote. "I know I cant live my life in fear."
We put this book together to provide a resource for people such as that
young woman who was diagnosed with cancer. Part I is a survival guide addressed
to anyone who is ill, Part II is geared to visitors and caregivers, and
Part III contains practical guidance and instructions for healing activities.
We hope that people who are ill will also read the pages for visitors and
caregivers so that theyll know how to help others help them. Likewise,
its our intention that visitors and caregivers read "A Patients
Survival Guide" (Part I) to learn more about the needs of their loved
ones.
If youre like the young woman who changed hospitals the day she was
admitted
if you have the courage she hasthen we have the information you need.
We know from years of experience that the information collected here can
help you heal
whether youre hospitalized, convalescing at home, or in an assisted-living
facility.
Because its difficult for disease to exist in a body filled with love,
your healing may result in a cure. However, we never promise cures, and
we never advise people to do things solely to avoid dying. If we were to
guarantee cures, people would get mad at us because eventually theyre
going to die, and then in heaven theyd need group therapy to learn
to forgive us. So please, dont read this book to avoid death. Read
it to heal your life, and to receive the blessings that come in many shapes
and sizesone of which may be learning that the treatments and side
effects of your disease are not all negative.
If you want to heal, you must be willing to change. No book or person can
change youonly you can change yourself. If you have the inspiration,
we can guide, coach, and assist you in mobilizing your resources. We can
help you develop the will to live and the strength to survive, and we can
show you what you need to know in order to say to your family, friends,
and treatment team: "Help me to heal."
***
Authors Note: Weve prefaced
certain blocks of copy throughout the book with our individual names to
differentiate between our respective voices.
Bernie and Yosaif
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