Your Comments: Bill Benda, Candace Campbell, Bill Manahan, Lori Bielinski and Lou Sportelli Reflect on Hospital Care - with a coda from George Orwell

Summary: My tales of my September hospitalization brought many notes from readers. Thank you. A few colleagues sent longer accounts and reflections. The idea began to grow in me to ask them for their permission to share. The result is this thought-filled, multi-voiced and multi-dimensional quintet on our relationships with hospitals - with an astute 1946 coda from George Orwell. Enjoy!

Voice #1: An ER Doc on the Responsibility, Fear, Bureaucracy and Respect Due  

Bill Benda, MD, an ER and IM doc

Bill Benda, MD, is the past medical director of the National Integrative Medicine Council, the first MD on the board of the American Association of Naturopathic Physicians, and a sometimes emergency room doctor.

"Very interesting personal story with regards to your appendectomy experience, especially as my upcoming IMCJ [Integrative Medicine: A Clinician's Journal] editorial is entitled “In  Defense of Conventional Medicine, or Back in the U.S. E.R.” Yep, I’m  back in the Emergency Department part-time. Decided to return to my pre-integrative roots for philosophical as well as financial reasons.

"I’ve been noticing over the past few years that many of our integrative perspectives on conventional medicine, based upon unconventional education, research, and just plain rhetoric, have been simultaneously spot-on and at the same time disassociated from reality.  Take the Emergency Department. Its acute care setting is often considered the one accepted bastion of the reigning paradigm.

"Bottom line – if the public and the nurses and the world of CAM insist upon giving ultimate authority and responsibility to the physician, they must give us the same level of respect and understanding as well." Bill Benda, MD

Yet few of us in the CAM field have worked there and understand that patient-centered care is a completely different animal in such an environment. The system simply does not allow for nurturing within a five-minute time frame - except by the few who can perform such a miracle repeatedly during a 10-hour shift. Thus for the alternatively-biased patient, the doctor often becomes the villain and the nurse becomes the savior, regardless of the fact that there are five to seven nurses and only one MD, who is responsible for every patient.  

"Last night I got home to find a phone message from the Monterey County coroner on my machine.  I didn’t quite recognize the patient’s name, and immediately assumed it was an adolescent I had sent home with belly pain a couple of days ago (can you relate?). Ihad been worrying about ever since.  So somebody had died, perhaps some mother’s son, and I immediately assumed it was my faulty judgment that put him in the morgue.  It turned out it a different patient, and nobody’s fault. But part of me also died as I listened to that message. Part of my soul is in the emotional morgue.

"Maybe we MDs are arrogant asses at times, but not once in my eight years of integrative care have I felt the fear I felt last night. Bottom line – if the public and the nurses and the world of CAM insists upon giving ultimate authority, and ultimate responsibility, to the physician, they must give us the same level of respect and understanding as well. Even if we do not always exhibit ultimate consideration and compassion.

"What is most fascinating, John, is that these 'life and death decisions' are not medical in nature, but bureaucratic. The kid had a white count of 20,000 and a fever, although the exam was not as impressive as the labs. Ideally, he would be admitted for observation. But the hospital was almost full, and the admitting team overworked and grouchy, and there were sicker patients to consider. He was sent home because of administrative and political battles, not because of what would be best for the patient. This is how the health care system operates, and there is no way to fight it as a clinician. We just try to save and help as many as we can given what we have to work with . . ."

Voice #2: Sister of a Patient on the Need for 24/7 Family Support

Candace Campbell, integrated care policy leader

Candace Campbell has been one of integrated health care's top lobbyists in Washington, DC, from her past position as executive director of the American Association for Health Freedom and her work on the steering committee of the Integrated Healthcare Policy Consortium. This story, about care for her sister, took place in early 2005. She notes: "I still get high blood pressure thinking about the experience."

"My sister, Bonnie, nearly died from a MRSA infection that was originally misdiagnosed. In spite of symptoms of infection and severe pain in her lower back, she was told that she had sciatica and sent home from the clinic with a prescription for a pain killer.

"Five days later, feeling that she was dying, she went to the emergency room. Fortunately, a young resident had her admitted immediately, refusing to wait for test results to validate her concern. In addition, the head of the infectious disease department happened to come through the ER and he had just given a talk at a medical conference on his treatment of choice for MRSA infections. This was a Friday night. They did not expect her to live until Sunday. She had a massive abscess in her lower back in a location that did not lend itself to surgery without the significant risk that she would lose the use of her legs. The treatment consisted of rotating two strong IV antibiotics on a rigorous schedule, and massive doses of painkillers.

"Our take home messages: family members must be with the patient 24/7 to provide both care and advocacy. You have to provide your own food if you care about nutrition at all. Hospitals are dangerous places." Candace Campbell

"The next two weeks were a physical and emotional roller coaster. Only after she was there for a week was she quarantined. Imagine the infection that could have been spread in that time. There seemed to be a shortage of nurses, even in the intensive care wing, so my family and I and several friends made sure one of us was there around the clock. We served as nurses aides and an advocate for Bonnie. Information was not transmitted between shifts, doctors orders were ignored, the extremely critical medication schedule would not have been met if we had not been there to monitor the timing and insist on attention, her pain medications would not have been provided adequately if we had not taken nurses by the hand and led them to her bed to administer them in time to prevent 4 hours of excruciating pain. We bathed her, fed her, suctioned and emptied the tubes draining her abscess, and reassured her when she suffered from hallucinations brought on by the fever and medications. We brought her 3 meals a day of healthy, organic food because the hospital provided jello, sugary juices and meat entrees (she's a vegetarian). Some of the staff appreciated our assistance because we freed them to attend to other patients, but a few nurses were openly hostile and took out their resentment on Bonnie if we happened to be out of the room.

"After two weeks, Bonnie was sent home, despite her heavily drugged state, intractable pain, inability to walk, and need to continue IV antibiotics for at least two more weeks. Her vital signs were stable, so the doctor had to discharge her. Our capable but elderly parents set up a hospital bed in their living room and our brother, friends and I became the care providers. A home health care nurse came to the house once each week to draw blood, but only after we made numerous phone calls to remind the agency. After the infection was gone, severe muscle damage left her unable to get around without a walker for months, but we were all grateful that she could use her legs at all. Total recovery took a year.

"We are eternally grateful to the dedicated physician and the resident who literally saved Bonnie's life. They answered our questions and listened to our suggestions. They spent endless hours at the hospital checking on their patients and averting disasters, and were always reachable by phone. We appreciate the efforts of the nurses who were caring and dedicated, despite being stretched to their limits, and wish early retirement for the ones who were nasty and even downright cruel. We appreciate the existence of life-saving drugs and pain-relieving medications. But the experience aged us all. Our take home messages: family members must be with the patient 24/7 to provide both care and advocacy, you have to provide your own food if you care about nutrition at all, and hospitals are dangerous places."

Voice #3: Hospitals as 3rd World Countries, and Reasons for Delaying Admission

Bill Manahan, MD

Bill Manahan, MD, is a past president of the American Holistic Medical Association and the founding president of the American Board of Holistic Medicine who has served as faculty with the University of Minnesota Center for Spirituality and Healing.

"I really enjoyed your musings regarding your recent hospital stay. Isn't it a fascinating experience to be in a hospital?  I am surprised that there are not more books and articles published about the experiences that people have while hospitalized. I often compare it to how I feel when I am going to spend some time in a third world country - some excitement, some delight, some pain, usually some increased risk, some amazing challenges, etc.

"John, I believe that your delay in going for help has to be looked at in a broader picture than whether your appendix would have ruptured or not if you had gone to the ER earlier.

"I often compare hospital experience to how I feel when I am going to spend some time in a 3rd world country - some excitement, some delight, some pain, usually some increased risk, some amazing challenges ... Bill Manahan, MD

"In the big picture, in my opinion, over the course of our lifetime, we would generally be better off by waiting a reasonable amount of time before bringing ourselves into the medical system. Things like motor vehicle accidents and some severe trauma are definite exceptions to that rule.

"The reason I say this is because statistics say that somewhere between 200,000 and 400,000 hospitalized patients in the U.S. die unnecessarily from iatrogenic causes.  Of course, many people's lives are also saved by going into the hospital.  But going to the hospital is not a totally free pass to take lightly.

"Your appendix may or may not have ruptured before surgery. But you had a good reason to have an upset stomach (the food you had been eating), so it makes sense to me that you would give yourself some time. 

"If people would be willing to give their mind, body, and spirit some time to handle its problems, it usually will do so without intervention from the medical system.  In other words, I believe the risk of waiting has to be compared to the risk of entering the system, and I suspect that except for trauma, heart attacks, meningitis, and some other things, waiting would be more beneficial to people over the course of a lifetime."

Plus, Mannahan reflecting on Benda and his own ER and holistic experiences

"The words that Bill Benda wrote were very powerful for me. In the 70's and 80's, we family physicians used to cover the ER all the time in our town of 40,000 people. Then in the 90's, I helped cover a small town (8,000 citizens) hospital ER.  This was before the days of ER doctors in every hospital.

"Dr. Benda is correct about the responsibility and stress.  I had more stress and worry in one week working the various emergency rooms than I did in one year of seeing patients in my holistic practice.  In the ER, there is just a tremendous amount of responsibility placed on the physician regarding life and death decisions.  The decisions in my holistic outpatient practice, while certainly making a difference in a person's quality of life, rarely are life and death decisions.  I rarely lose any sleep over what I should have or could have done differently in my holistic practice.  And that is quite different from the way I feel after a session working in the ER. So thanks to Bill Benda for his wise insights."

Voice #4: Breast-cancer Survivor & Insurance Expert on Quasi-Fraudulent Billing

Lori Bielinski, LMP

The professional work of Lori Bielinski, LMP, related to health care includes practice as a licensed massage practitioner, organizing her profession's state and national organizations on insurance issues, andf work in the Washington State Office of the Insurance Commissioner on the state's "every category of rider" law. She is currently executive director and lobbyist for the Washington State Chiropractic Association. She tells a story of hospital billing.

"After reading your article on your recent medical encounter I thought I would expand on your being warned that the ambulance which probably be billed to you, when, in fact, the hospital should cover it.

"My experience tells me that all consumers of medical care, especially when insurance billing is involved, should take the time to request an itemized list of services and supplies that you, and your health plan on your behalf, are paying for.  Why, you ask?  Here is one example:

"Requesting itemized statements from the hospital taught me a lot about what my health plan was paying for. "It sure made me aware that they were billing for things that in any other world would have been considered fraudulent." Lori Bielinski, LMP

"In an example of a patient with a breast cancer dx - me - in December of 2001, radiation treatments in 2002, follow-up maintenance care from 2002-2006, the oncologist noticed symptoms that required a more aggressive drug to be used in the follow-up maintenance care. The drug was to be delivered through a subcutaneous abdominal injection and was a minimal appointment lasting less than 5 minutes after the drug was dispensed from the pharmacy to the nurse.

"At the first appointment where I would go to my normal oncologist appointment, expecting to pay a normal office visit copay, I inquired about the cost of the injection, and the drug. No staff person or nurse could tell me the cost, and only indicated that it was usually covered by an insurance plan.  The injections were monthly. Six weeks after the first injection, now having received two, I received the first EOB (Explanation of Benefits) learning that the entire visit was $3092, and the drug alone was $2512.  I was also billed as a hospital visit which changes the copay that a patient pays to the provider, but I was never aware of it since I was in the oncologist's office, and didn't know I was in the 'hospital' when I received the injection. 

"So now, you see, I am being billed $2512 on a drug that costs $90 per injection and has an average wholesale price if $459.  The hospital pays $1750 and I am expected to pay $189...in addition to the hospital copay...that is quite a mark-up on a drug that, ok to give them the benefit of the doubt, is $459.  The profit margin is still 400%.

"When I challenged the facility I learned more than what can be written in a few paragraphs. I did learn that requesting itemized statements from the hospital taught me a lot about what my health plan was paying for, and it sure made me aware of where I thought I was paying for things that in any other world would have been considered fraudulent."

Voice #5: A Chiropractor and Hospital Trustee on the Value of Experiencing the Other

Lou Sportelli, DC, practitioner, political actor and hospital trustee

Lou Sportelli, DC, the president of Integrator sponsor NCMIC has 50 years of clinical experience as a chiropractor in his Pennsylvania town where he also serves as a trustee of his local hospital. His last comments published here were regarding the political battle beginning around the AMA Scope of Practice Partnership efforts to limit the scope of practices of other provider types.

"Now you can better understand my insistence on the clear distinction between Political Medicine and Clinical Medicine. Every DC, ND, LAc or any other alternative

"Far too often alternative practitioners do not have an opportunity to witness medicine and what it brings to the table. They develop a negative mindset which simply is not true." Lou Sportelli, DC

practitioner should have the experience to see the clinical side in action when it is needed. Usually on an emergency basis, where it works well. But this is not health care. 

"Conversely, every MD should have the opportunity for conversion at the hands of an alternative practitioner and see the wonders of thinking holistic and even more importantly to see and recognize the enormous value of the Placebo effect and healing.

"Far too often alternative practitioners do not have an opportunity to witness medicine and what it brings to the table and they develop a negative mindset which simply is not true.  Like Will Rogers said....it is not what they know that is the problem, it is what they know that just ain't so."

Geroge Orwell, first-time Integrator contributor

"And yet every institution will always bear upon it some lingering memory of its past. A barrack-room is still haunted by the ghost of Kipling, and it is difficult to enter a workhouse without being reminded of Oliver Twist. Hospitals began as a kind of casual ward for lepers and the like to die in, and they continued as places where medical students learned their art on the bodies of the poor. You can still catch a faint suggestion of their history in their characteristically gloomy architecture. I would be far from complaining about the treatment I have received in any English hospital, but I do know that it is a sound instinct that warns people to keep out of hospitals if possible, and especially out of the public wards. Whatever the legal position may be, it is unquestionable that you have far less control over your own treatment, far less certainty that frivolous experiments will not be tried on you, when it is a case of ‘accept the discipline or get out’. And it is a great thing to die in your own bed, though it is better still to die in your boots. However great the kindness and the efficiency, in every hospital death there will be some cruel, squalid detail, something perhaps too small to be told but leaving terribly painful memories behind, arising out of the haste, the crowding, the impersonality of a place where every day people are dying among strangers."
                  
                         -- George Orwell, "How the Poor Die" (1946)