| Help Me to Heal A practical guide for patients, visitors and caregivers by Bernie Siegel and Yosaif August Editor's note: 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 In recent years, we've 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 Santillan -- the 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 10 leading causes of death, with 10 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 couldn't 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 IOM's 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 toll-free 1 (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 doesn't want to answer questions, find another caregiver.] • Make sure you can read the handwriting on any prescriptions written by your doctor. If you can't 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 don't 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 won't be intimidated when you need to get information. Medical technology 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 can't 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 don't learn to take into account the patient's 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 illness -- either their own or a loved one's -- they 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 daughter's forehead, above the eye that needed the operation" and the other parents had written "Remove tonsils and adenoids only" on their daughter's chin? Those children wouldn't have gotten the wrong operations. The JCAHO offers similar advice, but they go one step further -- they 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 they'd 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 physician's survival list ended by advising patients to be assertive, ask questions, and not worry about annoying the hospital staff. He's right. Being a good patient isn't 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 don't have to make headlines and be involved in lawsuits -- you don't 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 shouldn't health-care professionals know as much about taking care of people? Peace of mind Psychologists, massage therapists and advertisers know that colors, textures, sounds, sights and aromas can contribute to our peace of mind -- it's a fact that's 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 can't lie still, the test has to be cancelled; the patient's 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 for -- the way he wished he'd 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 patient's 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 hotel's principles are better from the staff's point of view, too. "Dealing with" people is much less satisfying than "caring for" them, which may explain why it's 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. Searching This book is for people who are searching for information -- people 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 we've been describing: The hospital staff wasn't 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 she's now thankful for the cancer that changed her life. "My illness has opened up a door of reality that a healthy person can't understand," she wrote. "I know I can't 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 they'll know how to help others help them. Likewise, it's our intention that visitors and caregivers read "A Patient's Survival Guide" (Part I) to learn more about the needs of their loved ones. If you're like the young woman who changed hospitals the day she was admitted--if you have the courage she has -- then we have the information you need. We know from years of experience that the information collected here can help you heal -- whether you're hospitalized, convalescing at home, or in an assisted-living facility. Because it's 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 they're going to die, and then in heaven they'd need group therapy to learn to forgive us. So please, don't read this book to avoid death. Read it to heal your life, and to receive the blessings that come in many shapes and sizes--one 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 you -- only 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." Dr. Bernard S. Siegel is a pediatric and general surgeon in New Haven, Conn., who started Exceptional Cancer Patients, a specific form of individual and group therapy utilizing patients' dreams, drawings and images. Yosaif August is president and CEO of Bedscapes/Healing Environments International, Inc. at www.bedscapes.com Copyright © 2003 Bernie Siegel, M.D. and Yosaif August |
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