Tag Archives: Doctors

The Medical System Gave Up On Me

In 1995 I woke up from routine heart valve surgery with the left side of my body paralyzed from a stroke caused by the surgery itself: A tiny piece of tissue had broken away from the valve, traveled through blood vessels and lodged in my brain, blocking the flow of blood with its essential supply of oxygen to the neurons that controlled movement on my left side. I was 43 years old, married, with two young children.

If I had obediently followed the prescribed role of stroke patient in the world of conventional medicine, I would be an invalid in a wheelchair today. Instead, I am back at work as a medical journalist, paying taxes instead of collecting social security.

I recovered because “adapting” to my disability — which is what the insurance company doctor (who had never met me) told me to do after two months of occupational and physical therapy — was not an acceptable option for me. I didn’t want to buy shoes with Velcro, buttonhole fasteners or devices to hold a tomato steady so I could slice it. I didn’t want to walk with a cane or use a wheelchair in the airport. And I certainly didn’t want to spend valuable recovery time learning to use adaptive devices.

During my recovery, the health providers whom I found most helpful were those who recognized the devastation and despair that I felt as the result of this physical calamity. They saw me not just as a patient, but also as a wife, mother, writer and even amateur musician. In their understanding I found the encouragement, strength and hope that I needed to fight back to recovery.

The doctors I found least helpful were those who saw me not as a whole person, but rather as a “stroke patient:” These included the neurologists who shrugged and said “wait and see” when I told them that they must be wrong: I needed my left arm and I needed to be able to walk; and the heart surgeon who breezed into my hospital room just long enough to say, “Sorry you stroked, but heart-wise you’re fine.”

I quickly learned that while the advances of modern surgery can save your life, the conventional medical system — along with the insurers who pay for it — is not set up for full recovery.  The goal of the system was to get me out of the hospital or rehabilitation facility and send me home. What happened after that was up to me. The insurance company doctor (the one who never met me) told me that I had “plateaued,” which meant that while I had made progress in physical and occupational therapy, there would probably be no further improvement. I was at an impasse and additional intervention would be counterproductive (not to mention expensive).

As a patient, it feels as if the health insurers and many doctors want us to accept and “adapt” to our disabilities — whether we are recovering from a heart attack or stroke, suffering from chronic illness or pain or trying to manage the difficulties of growing older.  It is easier to prescribe pills and adaptive devices than to help us take responsibility for our bodies and our health.

I chose to fight my way back to recovery, and this is a tough thing to do for those of us who are accustomed to seeing our doctors as omniscient beings who control our health.  I learned about methods of healing outside of mainstream conventional medicine,including Traditional Chinese Medicine, chich has used acupuncture for thousands of years to treat stroke patients . Yoga, from the equally ancient Indian Ayurvedic system of medicine, gave me strength, balance and peace of mind. The Alexander Technique — a powerful system of movement education — taught me to use my body with less effort and reduced pain. Pilates exercise coaxed my weakened muscles back to work and craniosacral therapy restored my body’s natural rhythms.

I was fortunate: I had the will, the family support, the research skills and the financial means to pursue unconventional healing methods. Fighting the system is much harder for those who don’t have the money, the knowledge of alternative therapies or the emotional strength to keep up the lonely struggle for recovery.  Too often, such people live with pain, disability and despair.

Doctors must understand what illness means in the lives of their patients. They must use their positions, their authority and their words wisely. They have the power to heal, but they also have the potential to destroy hope and, along with it, the chance to recover.


Filed under acupuncture, Alexander Technique, chronic illness, Chronic Pain, Doctors, Stories of Hope, stroke, Traditional Chinese Medicine

Grand Rounds is up

Check out this week’s excellent Grand Rounds roundup of medical/health posts in the blogosphere, hosted by David Williams of the Health Business Blog. I’m happy that my post about “The Unhealthy Health Care System” was included. Topics of other posts include the complexity of doctor-patient relationships, patient tales, wellness, health technology and health policy.

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Filed under Doctors, Healing, Health

Unhealthy Health Care

We can exercise, watch what we eat, take cold showers, practice yoga and Tai chi, meditate for peace of mind. But even if we are doing everything we can to “own our health,” we’re still going to need a doctor someday. Good luck finding one.

The Massachusetts Medical Society’s 2007 Physician Workforce Study found physician shortages in primary care (family practice and internal medicine), psychiatry, and vascular surgery for the second consecutive year. Anesthesiology, cardiology, gastroenterology, and neurosurgery remain in short supply, while urology appears on the list for the first time. In public opinion surveys conducted as part of the study, the Society also found that access to primary care physicians, as well as some specialists, remains strained, and waiting times for appointments are increasing.

The American College of Physicians recently warned that “primary care, the backbone of the nation’s health care system, is at grave risk of collapse.” Fewer internal medicine residency graduates are choosing to become primary care physicians (PCPs)—18 percent in 2006, down from 50 percent in 2000—and existing PCPs are unhappy in their jobs, with many choosing to leave the field.

What this means is that it is harder and harder to find a primary care physician, and, when you do find one, it is likely that he or she is overburdened with a large patient panel and hours of bureaucratic paperwork.

How then, to create the kind of meaningful healing partnership with a physician that we all need and want? These kinds of relationships take time, something that is in short supply in this era of the 15-minute medical visit. One doctor told me, “if we just saw patients in the office the way we used to, we’d go out of business. No one can break even practicing medicine alone, because the health care finance system pays you to do things to patients—colonoscopy, MRI, CT-scan, endoscopy—not merely talk to them.”

But “merely” talking is the only way to get to know us patients; the only way to understand and help us manage the stress in our lives that may be causing physical or mental illness; the only way to educate and encourage us to make healthy lifestyle choices, to take responsibility for our health. And “owning our health” may help to make those expensive tests unnecessary or avoid even more expensive hospitalization and surgery.


Filed under Doctors, Healing, Health

Triumph Over Diagnosis

If you’ve ever heard a doctor deliver bad news, everything about that moment is probably seared into your brain with a permanence that rivals the moment you heard that Kennedy had been shot (if you’re that old) or the Towers had been hit (if you’re not.)

Is it because our doctors are the white-robed, high priests of medicine that their every word, frown, or raised eyebrow has the power to plunge us into the depths of despair? Is this why we scrutinize their phrases and mannerisms for clues about the future of our bodies?

Of course doctors — despite the mystique surrounding them — aren’t the high priests of medicine and they don’t have ultimate knowledge about our destinies. As one very wise doctor once told me, “a diagnosis — or a prognosis — for that matter, is just an opinion.” A well-informed opinion, to be sure, but not one that is carved in stone. If I had believed the neurologists who told me twelve years ago that I would probably never walk or fully use my left arm again, I’d be an invalid today. If my friend Janet had believed the oncologist who told her that she had one year to live, she would not now — ten years later — be writing her memoirs and enjoying her grandchildren.

The stories of triumph over diagnosis go on and on, and every time I hear or write about another one, I am awed anew at the power of the human spirit to overcome medical calamities that look hopeless. When I woke up from surgery with my half my body paralyzed by a stroke, what I thought was a calamity actually turned out to be a gift: It taught me something about myself and launched me on a new professional path. On this path, I have been privileged to meet and write the stories of courageous people who chose to disobey their diagnoses and to forge their own destinies of healing. Their very existence gives hope to all of us.

Of course we need our doctors. They are trained to make diagnoses. But they are not infallible. We should temper their opinions with what we know about ourselves. And they in turn need to recognize that their words are powerful influences on our bodies, minds and spirits, and they should be chosen wisely. We want our doctors to tell us the truth as they see it, but we also need them to be our partners in hope. Because, after all, neither they nor we really know what the future holds.


Filed under Cancer, Doctors, Healing, stroke

The World Within: An Ultrasound Tour of Pregnancy

A new book coming out this spring will offer a detailed “tour” of pregnancy, from conception to birth, using 2D and 3D ultrasound images. Your knowledgeable tour guides are two radiology professors at Harvard Medical School, Peter M. Doubilet, M.D., Ph.D., and Carol B. Benson, M.D. I had the privilege of helping them write this book, and learned a great deal in the process, especially from the original diagrams — drawn by Dr. Doubilet — that make it easy to understand the ultrasound pictures. However, the striking 3D images of the face and body hardly need explaining! You can learn more about the book, called “Your Developing Baby,” and see some of the images here. A great Mother’s Day present for any mother-to-be.

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Filed under Doctors, Health, Pregnancy, Ultrasound

Sorry You Stroked, but Heart-wise You’re Fine

“My doctor never looks me in the eye.”

“My doctor never asks how my spouse or family is coping with my illness.”

“I always feel rushed in my doctor’s office.”

Almost every patient whom I interviewed for my books made comments similar to these when they talked about the conventional doctors who were not helpful to them. The comments were most often made about specialists or surgeons whom they had just met, not their primary care doctors, with whom they had longstanding relationships.

One woman suffering from severe chronic pain said of the specialist she consulted, “The doctor kept looking at her watch while she was talking to me. I felt like I wanted to hold onto the hem of her white robe to keep her in the room with me.”

The husband of another patient burst into tears when a doctor finally asked him how he had been holding up. “During the months of my illness, when he was taking over the house and family responsibilities and worrying about me, no one had ever seemed to care about him before,” said his wife.

Patients like these are among the one-third of Americans — with some estimates as high as 60 percent — who seek help from complementary/alternative (CAM) practitioners every year, according to the National Center for Complementary and Alternative Medicine. In addition to providing alternative treatments for chronic pain and other conditions that are less effectively treated by conventional medicine, CAM practitioners and integrative physicians (who combine CAM with conventional care) often provide the compassionate, holistic care that many patients seek, but often do not receive, from their doctors. We expect excellent medical care and advice from our doctors, but we also have the right to more: We should ask our doctors to truly see us for the whole people we are: to look us in the eye and understand our dreams, worries, family and work pressures, preferences and philosophies of life.

The “fifteen-minute” medical appointment is not the problem. While I appreciate that doctors are overburdened and have too little time to spend with their patients, it is possible to make a real, human connection with someone in just a few minutes. I have experienced this from conventional doctors — even in the emergency room of a major academic medical center— so I know it can be done. I have also experienced the opposite: The surgeon who airily told me that my upcoming Marfan-related operation would be “just like having your hair done,” ignoring my terror at the prospect of open-heart surgery. And when I woke up from the surgery with half my body paralyzed, it was he who said, “Sorry you stroked, but heart-wise you’re fine.” He had done his job well; the rest of my life was up to me. With the support of my family and the help of integrative medicine, I recovered completely from the stroke, but not because of him.

We should not hesitate to ask our doctors to appreciate the important roles of our spouses, partners, children and friends in helping us recover from illness or injury. These people are often the best source of support and encouragement, and their love comes for free! At the very least, the medical system should recognize and appreciate their contributions, if not provide them with support as well.


Filed under Doctors, Healing, Health, Marfan Syndrome, stroke