Thursday, June 17, 2010

Hospital Experience # 16: Trust

This is the sixteenth in a series of posts on a recent experience at Ochsner Hospital - having a cardiac catheter ablation procedure to correct a heart arrhythmia. These posts describe and reflect on various aspects of the hospital experience. This sixteenth post will examine my difficulty in trusting doctors.

A patient has symptoms and goes to the doctor. The doctor examines the patient, diagnoses the problem, prescribes treatment, instructs the patient in how to follow the treatment, and sends the patient on his or her way - hoping that the patient will follow through.

The thing is - this doesn't happen in a vacuum. The doctor's voice is not the only voice that the patient hears - not at all. The patient goes home and talks with his or her friends about their experience with similar conditions, with doctors, with medication, with hospitals. The patient looks up his or her condition and the doctor's prescribed treatment on the Internet and reads all the side effects of the prescribed medication that the doctor failed to mention. The patient reads articles and books with titles like these:

  • How to Survive Your Hospital Stay
  • How to Manage Your Managed Care Plan - Don't Let It Manage You
  • How Hospitals Are Dangerous to Your Health
  • How Doctors May Not Have Your Best Interests at Heart
  • How Big Pharmaceutical Companies Are Poisoning You
  • How Some Primary Care Physicians Are Secretly Demons with Invisible Horns and a Tail - Is Yours?

In other words, patients hear and read lots of information that inspires distrust of doctors, hospitals, pharmaceutical drugs, and the whole medical system. I have certainly taken in my share of this, and it has made me doctor-averse, hospital-averse, and medication-averse. It is difficult for me to trust doctors.

Here are some friends' and acquaintances' experiences.

  • A friend's twenty-year-old daughter broke her leg, had it set and placed in a cast, and wore the cast for the required number of weeks. While simply having the cast removed, the daughter died because of complications with her asthma.
  • A friend had surgery to remove a bunion and wound up with a pulmonary embolism and a week in Intensive Care.
  • A friend's father got a terrible staph infection during surgery as a result of the surgeon's carelessness.
  • A friend of my father's came out of surgery with a terrible burn on her chest because a member of the surgical team had laid a scalding instrument upon her - mistaking her, I suppose, for a table.
  • A friend was told that she HAD to have a test with a minimum amount of a substance that she is allergic to because, the hospital insisted, there is no possible other way to perform this test. What the hospital meant is that there is no possible other way to perform this test AT THAT HOSPITAL. Other ways are available elsewhere, but the hospital was not going to tell my friend that.
  • An acquaintance's husband committed suicide immediately after a hospital stay as a result of being administered a drug that caused serious depression.

In addition to the above, I know that the following things happen in hospitals.

  • Surgical implements are left inside patients' bodies when the patient is sewn up.
  • Patients are left with varying degrees of paralysis as a result of surgical slips.
  • Patients experience anaesthesia awareness, even to the degree of the anaesthesia not working at all, causing the patient to feel the excruciating pain of the entire surgery. Since surgical patients are administered a paralyzing agent, they are unable to signal in any way that they are aware and experiencing unbearable pain.
  • Patients are given the wrong medication or the wrong dose of the correct medication.
  • The anaesthesia has unexpected effects, including brain damage, unbearably loud tinnitus (ringing, or should I say roaring, in the ear), horrible rash, excruciating headache, loss of proprioception (one's sense of being in one's body), loss of sense of balance.
  • Patients continue to experience inexplicable post-surgical pain for several years after surgery. I read about this in an article on organ donors - the healthy patients who are donating an organ to save someone's life - the patients who are supposed to recuperate smoothly and quickly.
  • Patients are accidentally operated on with non-sterile surgical implements.

As I think about the above occurrences, I realize that they are rare. The trouble is - they do happen. If a particular disaster has .01 percent chance of happening - and you fall into that extremely rare .01 percent - then that particular disaster happens to you 100 percent. You don't get just .01 percent of the effect - you get 100 percent of the effect. If the surgeon slips while operating on your body, the rest of your life is 100 percent affected by paralysis. There is no .01 percent effect.

In addition to the incidents and occurrences mentioned above, I have read articles, newsletters, and books that lay out thoughtful reasons not to trust the medical field. For example, I receive Dr. Julian Whitaker's monthly Health and Healing newsletter. Dr. Whitaker is a medical doctor who practices what he calls wellness medicine, using both traditional and alternative treatments. Dr. Whitaker warns against many practices of traditional medicine, including treating high blood pressure with medication.

But sometimes I don't know any viable options, such as when I felt my heart beating in my throat in March. As far as I could see, the option available to me - besides doing nothing - was to go to the emergency room. I did. And then followed doctor appointments, heart monitoring, a diagnosis of high blood pressure, prescription of a blood-pressure-lowering diuretic, a diagnosis of supraventricular tachycardia, the cardiac catheter ablation procedure which in the end could not ablate the arrhythmia, prescription of a low-dose heartbeat-regulating medication. Clearly, I have decided to go with a medical regimen in addition to my own new health habits.

The problem has been that I have sought medical help while holding a distrust of doctors and medicine and even feeling angry that I need help and don't seem to have any other place to turn that feels trustworthy. So I have been communicating to doctors this message: "Please help me - I don't trust you."

Doctors, of course, sense this distrust. I'll have to say that the doctors I am currently seeing have been wonderful about this unspoken undercurrent in my attitude. They treat me pleasantly and provide serious explanations of why they recommend what they do.

I think that I need to decide to cooperate with them - to be open, to express my concerns, to ask my questions, to know that I have every right to make my own decisions about what treatment to follow, and to communicate without an underlying distrust and hostility but with amiability and courtesy.

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