Is Possible to Trust Doctors Again After Medical Harm?
Shattered trust. It’s a term people use to describe a betrayal in a romantic or professional relationship. A cheating partner. A back stabbing co-worker or boss. Most of the time it’s deal breaker, resulting in a break-up or someone leaving a job.
But what happens when that shattered trust involves medical harm? Would you ever trust a doctor again if he/she had operated on the wrong knee or kidney? What if you had been misdiagnosed or were sexually assaulted by a doctor? Even worse, what if that harm was deliberate?
That’s what I had to confront after my father was deliberately harmed, which resulted in his death. This was not just one rogue doctor, mind you, but a concerted effort by a number of doctors and nurses at two hospitals and a nursing home to keep me unaware of what they were doing to him.
By going through medical records after my father’s death, I learned that his primary care doctor had drugged him with Risperdal, Haldol, Ativan, Tylenol with Codeine and Morphine after admitting him to the hospital to determine the cause of back pain. (Risperdal and Haldol are antipsychotic drugs, which carry FDA black box warnings that they are not recommended for seniors because they can cause serious side effects and death.) All these drugs had been given without my knowledge or consent as power of attorney. My dad’s doctor and all the nurses denied he had been given anything to make him suddenly lose his mind. That, I was told, was due to hospital delirium, common in the elderly; it was recommended that he go a nursing home for rehabilitation for his back and his mind for a few weeks.
At the nursing home, however, the medical director prescribed more Risperdal and Haldol, along with double doses of Ambien and Vicodin – again, without consent or apparent need. That doctor never spoke with me about his care, refusing to return my desperate calls as my father went into a death spiral due to the deadly side effects of the antipsychotics. When he was rushed to the hospital after his 7th fall in 12 days, the doctor slipped in and falsified a “Do Not Resuscitate” consent form. The physician who was called in to consult denied any drugs had caused his mental decline; he turned out to be on the board of the medical malpractice company that insured the nursing home doctor.
My father was dead less than two months after going into the hospital. Ironically, the cause of his back pain was spinal stenosis, which could have been treated with outpatient physical therapy and over the counter medication.
This betrayal of care had a profound affect on my entire extended family. No one trusted doctors or nurses anymore. My children were afraid to go to the doctor, and looked up anything they were prescribed for side effects before any pills were taken. My sister-in-law kept her father at home in his final years, not trusting any hospital or nursing home to care for him. Because I became a patient safety advocate after my father’s death, friends would call me in a panic if a physician recommended a nursing home for a parent.
So it was terrifying when we suddenly had to deal with doctors again when my husband was diagnosed with GIST cancer and sepsis last year. Because it was a hemorrhagic tumor, the doctors wanted to act quickly, wanting to do perform surgery the next day. It was hard not to panic at the thought of trusting my husband’s life to a surgeon we had not personally chosen.
What helped is that in the three months leading up to that diagnosis, my husband’s doctors actually talked to us. This was so different than the invisible doctors who deliberately harmed my father. This time around, Ed’s cardiologist listened to our concerns, and tried to answer our (my) unending questions as we were referred to a pulmonologist, hematologist, and gastroenterologist.
Several factors helped this particular doctor/patient relationship. First, I was not afraid to tell my father’s story, basically as a warning that I knew patient rights; more importantly, these new doctors were outraged that one of their own would treat a patient that way. Second, this new set of doctors was a good 15 years younger than those who treated my father. It made me wonder whether younger doctors are more in touch with treating the whole patient, and are not as willing to force the traditional “the doctor is always right” attitude. I felt that we were tracking down the cause of Ed’s symptoms together, because each step was explained along the way. Finally, by this time, I knew how to look up doctors on the Medical Board of California website to see if they had any disciplines, malpractice lawsuits, or criminal convictions – and to see where they went to medical school. I had downloaded the new doctor app on my phone so I could look up any new physician we met along the way within seconds. (I am also aware that complaints against doctors are not listed, and some documents have been taken down and not replaced.)
When we were told which surgeon would operate on Ed, this new group of doctors seemed genuinely pleased, almost relieved, that a reputable person would be taking care of their patient. Having that endorsement by other physicians we knew helped allay our fears.
Later, when Ed developed a sudden fever a few days after being released, I rushed him back to the hospital, concerned about sepsis – and worried that I would have to fight to convince doctors he needed treatment immediately. I knew that there was a small window to treat sepsis, and that medical professionals often misdiagnose or ignore symptoms until it is too late. I dropped Ed and my adult son off at the emergency room door, quickly parked the car, and literally ran into the hospital, fully expecting a fight to get Ed prompt treatment. I was stunned and relieved to find that Ed had already been given an IV and a dose of antibiotics. He was septic, and spent another five days in the hospital – but he received treatment within that critical window.
This experience with Ed’s surgery has helped to ease my fear of doctors and medical harm somewhat. It was not perfect though. I did report a hospitalist who refused to wash her hands and use gloves during multiple visits, declaring it “silly.” (She felt hand sanitizer was enough to kill superbugs.) However, I have gained confidence in dealing with doctors.
As an advocate, I now read all the accusations and disciplines that the Medical Board of California releases, so I am acutely aware that preventable errors and bad doctors happen more often than we would like. By being vigilant and questioning every step of treatment, I believe patients and their families can make a difference in the outcome of any procedure. I also believe that it is critical for a doctor to communicate with the patient to discuss and agree on the best course of treatment.
So has my shattered trust in doctors been repaired? No. Not even close.
I will always look up every doctor and verify everything I have been told. I just know better how to deal with the trust issue – and the doctors that will cross our path in the future.
