"Patient intubated- unresponsive- family distraught.."

"Patient intubated- unresponsive- family distraught.."

Those are the patient notes dated 11/01/01 as EMS and hospital workers desperately tried to save my mother's life. She was too young to die, too full of life, and she so wanted to see her young grandchildren grow up to start their own families. She would never get that chance.

My sister found her on floor of her home, pulseless and asystole, and had to endure the trauma of trying to breathe life back into my mother. I cannot imagine the scene. My father distressed and panicked, and my sister trying to save her life.

When we arrived at the hospital, we saw them as they wheeled her in, trying to resuscitate her. Hospital staff and medics were amazing, and they worked diligently, tirelessly to save her too. She was transferred to ICU in a coma, and on November 4, 2001, after consultation with many physicians including neurologists who determined she suffered sustained anoxic brain damage, we made the excruciating decision to end life support.

Her diagnosis? Arteriosclerotic cardiovascular disease with left ventricular hypertrophy, aortic atherosclerosis, bilateral pleural effusions, bilateral pulmonary fibrosis, pitting edema of lower extremities, pulmonary congestion, and bilateral arteriolonephronsclerosis.

This is something about which I've never spoken publicly.  But, it's time. I feel it. You see, there is a history behind my mother's death.

The year prior to her death, my mother lost 50 lbs.  At first, she seemed excited about the weight loss as she had a few extra pounds to shed. But it was effortless weight loss, and progressively she became thinner and thinner, until we were all very concerned. We ushered her to the hospital for tests, which they did, but they were unable to explain the expeditious weight loss. Indeed, historically it was not unusual for women's heart disease to be missed or mistaken for another disease or disorder because much of the research used to be conducted on men. And men's symptoms are different from women's symptoms.

Then the hospital requested a consult with a psychiatrist.

He diagnosed my mother with depression and anorexia nervosa. He sent her, then, to an inpatient facility that specialized in eating disorders.

I was furious.  Our family was confused:  They just wanted her to feel better, to be healthy again.

I fought with the psychiatrist in the hallway as anxious staff walked past hurriedly. I raised my voice, though apparently not loudly enough. I told him that I knew my mother, and that she didn't fit the psychological profile for either diagnosis. He asked if I had a medical degree and then suggested I "stick with the social sciences and leave medicine" to him. He was a condescending fuck.

So, he put my mother on a battery of psychiatric medications and she endured treatments that were inappropriate for her real medical condition.

She hated the inpatient facility, did not understand his assessment, and eventually checked herself out of the unit. But her condition never improved, and most professionals, following the psychiatric diagnoses, were now uncertain if this was a psychological disorder or a medical mystery. We'll never know what would have happened had she been further tested for her biological disease and received real treatment sooner rather than later, whether or not she'd have lived. Lesson to providers? Bow to your patients, to their families. Use your wisdom and your knowledge and your experience with a compassionate and open heart. Listen, deeply, to their concerns. Take a few extra steps, offer a few extra minutes. You are not omniscient, you are human. That, in fact, will endear you to us more than anything.

Do no harm.

Because this ugliness is what arrogance looks like. She died of congestive heart failure, misdiagnosed as something else. And these are the consequences of incompetent care. She would never get to see Josh play basketball. Or go to Cam's wedding. Or see Ari or Sissy graduate. She died.

And talk about the domino effect, my father died four years to the day later of what I'm sure what his broken heart.

"Intubated. Unresponsive. Family distraught." Still.

_________________________

For Eric whose little life was harmed at the hands of an arrogant provider.

Deep bows to all those providers who exude compassion, humility, and loving kindness with their patients and families. You cannot imagine the importance of both what you do and how you do it. Thank you.