Dr. Thompson's Blog

Improving Care of Patients with Disabilities or Chronic Illness

Even though medical care for patients with disabilities or chronic illness is too often sub-standard, there are some technology advances that hopefully will make up for the lack of good medical care.The key to success is coordination of the efforts of the different individuals caring for  a patient. A team of professionals is important, but communication among and between them is important. Doctors, social workers, physical and occupational therapists are essential for most of the patients. I was fortunate to have access to both art and music therapists when I founded and was directing the Center for Handicapped Children in San Francisco. We even had a dance therapist who was amazing. She brought some fun, socialization and even physical exercise to the patients who could benefit from it. 

Computers and other new devices now allow patients to turn on lights and other equipment and this can make a great difference. Most importantly a good quality of life should be the goal to strive for. If a patient sits in a wheelchair or lies in bed with no fun, no intellectual stimulation, and no socialization, the best medical care in the world can not make living bearable. When patients  have a progressive disorder as Duchenne muscular dystrophy and other disorders. I believe the patients, who are able to to make decisions about their lives, should be given a choice about what they want. As patients become more and more incapacitated their ability to fight off unwanted life-prolonging medicine or technology becomes less and less.  When my patients were reaching the stage where some decisions needed to be made, I always asked what  they wanted in the way of life-saving care. Only one young man told me I should use every means to keep him alive. The other patients said "I don't want any breathing or other technology to keep me alive." I   have seen both families and doctors bully patients into  having care they did not want and that would greatly decrease their quality of life. I believe that is morally wrong. 

 

All Muscle Weakness in Children is NOT Muscular Dystrophy

When a child, especially a boy or teenage male, develops muscle weakness, the immediate diagnosis that seems to come to doctors' minds is muscular dystrophy. Because there is little teaching about  muscle diseases in most medical schools and residency training  programs, this is understandable. Even neurologists, unless they train in a neuromuscular center, receive little training in muscle disorders. The U.S. is far behind  several other major countries in this training. China, India, Turkey, Tunisia, France,  Germany, England, Canada, Australia, and Sweden are far ahead of us and have been for countless years. Little money can be made in treating these patients,  which is probably the primary reason, since money seems so important in American medicine today. There is considerable research in the U.S., but good clinical training is lacking. One study showed  that fifty  percent of patients with muscle diseases were misdiagnosed. This is particularly heartbreaking if the muscle disorder is a treatable condition, such as polymyositis or dermatomyositis.

Polymyositis generally develops more rapidly than muscular dystrophy and does not show the typical pattern of progression of muscle contractures. When a muscle biopsy is done and shows no imflammatory cells, these disorders are discounted. Twenty-five percent of polymyositis cases do not have inflammatory  cells, although occasionally changes can be seen on electron microscopy sections. Also the CPK blood test may be normal in 25% of cases which is misleading for many doctors. The sad part of this lack of diagnosis is that if either of these disorders is identified early on and high doses of  prednisone started and then gradually reduced, a patient may be returned to normal or almost normal function.   Polymyositis can occur at any age and should always be considered with rapid developing muscle weakness or in a floppy infant.

Concerns about Teaching in Some Medical Schools

I have been thinking today about the article I read this morning in the New York Times. It  was about how the the new UC Riverside medical students are being taught. The students use dummies for patients, three D instruments to view different parts of the body and other automatic tools. I am wondering how with all these advanced technical instruments, the students are learning to truly interact with patients and particularly children. I have taught in three big medical schools and in several pediatric programs in two big hospitals. 

When I retired to San Diego, I taught pediatrics for two years at U C San Diego with a wonderful child whose grandmother had been one of my first parents when I was in practice there. Emma was and is a delightful child. I had a toy basket for her, books, and gave her a gift at the end of the session. The medical students loved it and I think learned a lot. The third year I was told I could not bring a child and was to use a doll! Showing the students how to check for hip problems, the doll's leg pulled off. That was the final straw and I said I would not teach with a doll. Now I teach second year students about history and physical examinations on adults, all of whom are actors. At the end of each session  I try to  do some real teaching and the students beg me to come more often. They want to learn real medicine, not what is computer based.  

When I was running a program for disabled children at Oakland Children's hospital I  had a child in a wheelchair with a condition where many joints are fused. (arthrogryposis). His hands were badly involved.  An orthopedic resident walked into the examining room, didn't speak to or look at the child, but grabbed his hands. "This interesting", he said. I  asked him to step outside and told him he was never to treat a patient of mine like that. He had no idea what he had done. The child was  just a dummy as far as he was concerned. 

How to get Good Medical Care in an HMO

It is possible to find good physicians and get good care in an HMO,  but only if you demand it. An HMO prefers to have  only healthy, young adults in their care. If you have a medical problem, trouble can be ahead. Each physician gets a report card periodically about how many tests they have ordered and how many referrals to specialists they have made. Their salaries are affected if they order too many. Most HMOs also have a limit on the amount of time to be spent with  each patient. I would last in an HMO about 10 minutes. There is no way I would tolerate these rules. Some patients take a while to really get to the bottom of their problems. Getting to know your patients as a physician is one of the true joys of practicing medicine. You become a very important part of a patient's life and a long term relationship brings many rewards, not financial, but very special. 

Before you enroll in an HMO it is important to answer a lot of questions and also carefully read anything you are given to sign. You want to be sure of which tests are allowed for you and your children. You also want to know if they will pay for emergency care in another hospital if you are traveling. For your children, does the plan pay for immunizations, yearly physicals, lab work and ER care? Also, who will see your children? Will it be a pediatrician or a nurse practitioner? I saw a two- year-old one day with a severe degenerating disorder. The parents said their child was  seen at the local big Kaiser.I asked the name of their pediatrician, so I could send him or her a report of my examination. The  parents said they had never had a pediatrician or M.D. but the child was seen by a nurse practitioner. The  little boy had a progressive, life threatening disorder and I was appalled. I met the CEO of a  large Kaiser on an airplane and told him about the boy. He said not having an M.D.was  impossible. He gave me his card and when the child died a few months later I tried to locate  him, but he had moved. I will never forget  that little boy.  

Breast Cancer and Choices

I am not an expert on breast cancer but I do know about choices. The most important thing is to always get a second opinion. Many people feel that if they go to a well known medical school the treatment will be the best. A good friend, who was an M.D., had a lump and then  a breast biopsy. She was told it showed cancer, so she had a mastectomy. The pathologist could not find any cancer in the breast tissue. They had planned to do chemotherapy and radiation. What a tragedy.

Two friends recently asked me about friends of theirs who had been told they had breast cancer. Neither woman had asked for a second opinion. Plans were being made for one to get radiation in an independent center in a town well known for its terrible medical care. (I know that first hand!) I suggested a second opinion for the woman and asked that she please go elsewhere if she really has to have treatment. First, however  her biopsy needs to be reviewed. All the woman has to do is fill out a form and have the slides sent to the best possible cancer center.  I think patients these days must take charge of their medical problems and always seek second opinions unless the doctor is a true expert in the area of their  medical problem. Many lives would be saved if second and even third opinions  were requested. 

Some pathologists are great about saying they would like a second opinion on biopsy slides. This is not just for breast cancer but any time a biopsy is needed. I  have great respect for  pathologists who admit  they don't have the training to look at a particular kind of tissue. This can be rare but there are some wonderful, concerned pathologists.  You just  have to ask.

Senior Medical Care When Traveling in the U.S.

If you are traveling in the U.S.by yourself or other seniors there are some precautions to take. As an older person, you want to be sure you carry a prescription for your glasses if you need them. Glasses do get broken. You also want to be sure you have refills  for any prescriptions you take. If you become ill on an airplane there may not be a physician on board. The airlines are somewhat better in the past about training their staff about what to do if someone becomes ill. I hope they are better, too, about having more medications available for physicians to use than they did in the past. I have responded to calls for a physician several times when I was flying.  One time it was necessary for me to have the pilots land the airplane mid-way across the country because there was no medication I could use to stop a man from  having seizures. From his luggage, we decided that he was using a stimulant and had been traveling for several days. I was accustomed to treating seizures in children, but there was nothing in the airplane medical chest  I could use. 

Most, and I hope all airlines  have defibrillators on board. I am told the staff are trained to use these. I  have found that some of the flight attendants in the past were quite difficult. One flight attendant insisted I show her my medical license. Would she had done that for a male doctor? Another one asked me if I wanted a glass of wine as I was listening to a person's chest and taking his blood pressure. Amazing!

My other concern, if you are traveling by car or bus, and become ill is about using urgent care facilities. Not all have a physician on-call. I have seen seen some grave mistakes happen when a non-physician tries to treat a patient. One teenager who had muscular dystrophy, was told he had diabetes and the nurse wanted to give him insulin. The parents called me and traveled for several hours so I could see the youth. A chest X-ray showed he had lobar pneumonia! He did well with the right antibiotics.

Medical Care for Seniors

A woman called me about the concerns she had  regarding her eighty-year-old husband. She said he now always seemed very tired. I knew the couple received their medical care in an HMO. The  accounts she had told me previously about their internist were disturbing.  The doctor said anyone in their eighties who had a problem was "just getting older". He seemed to discount they might have an actual medical problem.  I asked the wife when her husband had last had a complete physical examination,  chest X-ray, pulmonary function tests,  EKG and a blood panel. None of those had been done recently or ever!

I don't know how  any doctor can dismiss an older patient's concerns without doing a physical examination and some tests. What patients in HMOs may not know is that each test costs the doctor money. HMOs really just want healthy,young patients who don't cost them any money. No matter how hard I try to keep people, who can afford good medical care, to get it, I often fail. To me the best medical  care can made the difference between life and death or a life that has no fun or quality to it. 

The other problem I have found with many HMOs is that they have nurse practitioners who see patients without any oversight by a physician. A brilliant man in his fifties who did book editing for me died with terrible medical care in an HMO. He did not see any doctors but a nurse practitioner. I am sure there are some excellent nurse practitioners in areas where no physician wants to practice and they fill an important need. Now too many doctors are choosing specialties that make them a lot of money. Family doctors, pediatricians and psychiatrists are at the bottom of the pay scale. Some psychiatrists will just accept cash payments, so they may do very well. So I would urge family members who have an elderly spouse or parents insist that an elderly person receive the best medical care possible and not in an HMO.

Should U.S. Medical Schools be Free?

Once New York University announced they would no longer charge for medical school, there have been many letters in support of this. Other letters have suggested that if medical school is free, the recipients should  pay back by giving two or three years of medical care to  patients in low income areas. This certainly seems fair. The choice of so many medical students theses days is to go in to surgery or dermatology so they can make lots of money. Many of these students don't have debts to pay back but just see medicine as a way to make a lot of money.   It is stated that one-third of medical students do not need financial aid, so they should certainly pay for their medical school training. 

When I applied to Stanford for medical school,I didn't think about the cost. My father's salary at that time, as head of the psychology department at Pomona College, was about equal to the tuition. I was very fortunate that Dad had a colleague at Scripps College who was single and had had a mother who wanted to be a doctor but could not afford it. Unknown to me until several years later, Dr. Eyre established a scholarship at Stanford so I could go at no cost. The scholarship is still there for women who want to become doctors. How lucky I was. 

I certainly did not consider how much money I would make when I became a pediatrician. I loved babies and kids and for me there was no other choice. In the last 30 years when I cared for children with disabilities, my income was exceedingly low. However, I was doing what felt right and I knew that somehow I would make it. If a young person is deciding to  go to medical school to make a lot of money, I hope they will chose another profession. 

It is a great joy to be a physician and help patients. I loved practicing medicine and still hear from patients I saw many, years ago. Money cannot replace that joy. 

 

When Doctors Don't Refer to Specialists or Ask for Advice

I was reading an article recently about a pediatrician who was loved by the family because he was very involved in getting them the help they needed for their two sons. Both boys were said to have weak muscles. The diagnosis of cerebral palsy was raised, as well as some form of muscle disease. The doctor ordered various genetic tests but at no place in the article did I see that a neuromuscular specialist had been consulted or the boys sent to see one. I thought about this and wondered if it was the doctor's ego or just lack of training. Few general doctors or pediatricians receive any neuromuscular training. Orthopedic surgeons who see children with muscle problems also receive almost no neuromusuclar training. I was married to an orthopedic surgeon who had wonderful surgical training but he learned about muscle disorders from me. 

I had one parent who told me of her experience with an orthopedist. He examined the child, watched him walk and told the mother, "Your boy has Duchenne muscular dystrophy. I would take him home and let him die." As it turned out the boy had treatable dermatomyositis. With the prednisone treatment I ordered he has lived a long a productive life.

Sadly. if a general doctor tries to have a muscle biopsy done, most are worthless. Pathologists generally do not have training in reviewing muscle biopsies. I  have seen biopsy slides from across the country. They were so poorly put together by the lab technicians that they were unreadable.  Yet many were signed out as muscular dystrophy. I have always reviewed my own biopsies and if I had a question would send them to Dr. Caroline Sewry in London. She is the world's expert in these and the author of the  main muscle biopsy books.   She is working on a new revision at this time.

 

Trump is Trying Again to Undo Obamacare

An excellent article on 8/15/18 in the New York Times by two law professors notes how Trump continues to try and sabotage healthcare. First he promised he would see to the repeal of the law that has helped millions of people. When that didn't work he has tried to whittle off pieces bit by bit. His newest ploy is to announce that insurance companies can sell "junk" insurance. Of course, he didn't call it that. He  just said that the policies can last for 364 days and be renewed for up to three years. These policies do not have to abide by caring for those with  pre-existing conditions and long-term medical care can be denied, as well as other things that ensure Americans will  have adequate healthcare coverage. Of course, Trump and his family have excellent coverage, so his wife could stay in the hospital as long as she desired, which she did, and not suffer any financial penalty.

I was glad to read that a lawsuit has been filled by several cities against this newest attempt to destroy parts of Obamacare. Trump, when he took the oath of office as President, said he would uphold the nation's laws! He certainly is not doing that. Instead he is lashing out at anything President Obama did. As the presidential historian, Douglass Brinkley said recently, "Trump has soiled the presidency." 

I think as Americans, we  must  stand up to these ongoing and devious ways to destroy our healthcare system and our country. How sad that a man can only care about destroying everything President Obama did. I wonder how he will be viewed by historians?