Thursday, February 28, 2013

"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.


Anonymous said...

I am sorry for your tremendous loss, the loss your family will feel forever. I've been in both shoes, professional, thinking I knew and as the patient or survivor, wanting answers. In all of these instances, positions, we need people to listen. Good diagnosis depends on it. We need people who pay attention to the entire family system, our needs and even their needs.

I know, person by person, you are bringing some light to others. Perhaps, just one physician, nurse, social worker will read your message and understand we can't understand the other but we can listen, deeply. My healing comes in knowing others care.

Again, I am so sorry for your loss. I am sorry there are what ifs and no answers. Blessings, love and light <3

Ben's Mom

Dr. Joanne Cacciatore said...

What a lovely and compassionate message, Ben's mom. Thank you. I'm sorry you've been on both ends. I imagine that to be difficult.

Far too often, I hear stories from our MISS Foundation families about providers who aren't listening, sometimes costing lives.

And more, though not enough, I hear stories of the amazing providers who - whether or not they were able to save lives - saved hearts. Love is a powerful force.

Terry said...

In spite of being married to a physician I wholehearted agree. I'm certainly happy that he WAS NOT this kind of physician but the kind who listened intently to the mothers (and fathers) of the little ones he treated. Imagine my frustration when he became seriously ill with an "unknown virus" and nothing could be done to stop it from slowing and systemically and systematically killing him. Yet could things be done? I saw lots of drugging in the hospital but nothing done to feed him a nutritious diet that would control his inflammation, thus allowing his body to heal. I spoke with doctors, dietitians but unfortunately there is scarcely any "real" food to be had in hospitals. I tried bringing in food for him, supplements, healthy protein, homemade skin ointments; everything I could possibly do while holding down a full time job and taking care of my normal responsibilities. He was on so many meds I had to create a spreadsheet to keep track of it all. Granted, ultimately we are all responsible for our own health care but "do no harm" does not seem to be given much thought these days. Big pharma continues to advertise and push their "wonder drugs" while the health of our society continues to plummet and people in general looks for miracles in drugs instead of miracles in food. So very sad our medical system has deteriorated so much; whereas prevention used to be a major factor in it. But this was in times way passed! And here we are today with impressive and life saving equipment, medical technology at its best, and the simple things continue to be overlooked. And our loved ones continue to leave us prematurely. Yet the responsibility lies within each one of us. I feel your pain Jo as I saw this happen to my Mom and my Dad as well. Our hearts will always ache and always wonder why!

Anonymous said...

Well said, Jo, as usual. Love you! I'm so sorry your family had to endure this tragedy.


Dr. Joanne Cacciatore said...

Thank you Lorri & Terry, dear friends. I love you too.

Mary said...

Dear Joanne, I read your post a few hours ago and decided I could not respond without letting the message really sink in. I am so sorry your mom and your family was treated with such disrespect and suffered such an horrific death as a result. I don't know how to say it gently.

I carry with me every single day a deep deep sadness about my Bill's death because one psychiatrist could not be honest with me, basically ignored my input and wisdom as well as not sharing information I had fought hard to get. Luckily and just in time he was away and a sub came on duty who sat down with me and poured out truth. Because of her I got Bill home and he died peacefully in my arms 5 days later. I can't think of some of what Bill went through because of the "care" he got and because I did not catch on soon enough to. What was going on. Hence my passion to do what I can regarding end of life issues. I was reading Ira Byock's book, The Best Care Possible, when I stopped to get email and read your post.

Somehow we MUST change the way health care is dealt with in this country. I am just so sorry your mom and your family was one of its victims. You honor your mom with all you are doing to change things. I know she is smiling.

Peace to your heart,

Anonymous said...

I almost was your mom. I cry thinking how the doctors treated me. People were beginning to believe it was me. I kept fighting against the odds with all this too. I was basically said to have had a bipolar mania happen when i had extreme back pain then chest pains. I described it as having a mack truck hit my back then my chest. Before that I had symptoms mimicing a stroke or TIA. I went in December for actual back pain to the ER. (This was all said there)This is still going on where they would rather get a quick diagnosis and not do the right thing. They treated me crappy i got pinched and the karate chopped in the chest, right before the doctor said i was faking. he tried to get me pink slipped (involuntary paych hold). I was able to move a little later, thankfully. The whole reason for this is am incredible type of illness they are checking out on me. I know what the new diagnosis is and am worried about this being hard for me when I dealt with what I did.

Here i go now...still kicking and smiling and hoping I can do and be all i can be if it is this disease. They found spinal fluid going where it not be going. My guess is this really is what I have. Those doctors i had were arrogant and they were just ER docs. How can you basically know what I am going through, having it happen to you or someone you love.

It will take lots of emotional recovery for the twisted treatment I got.

Karla Helbert said...

I am so very sorry that your mother and your family--you, your sister, your dad, all her grandchildren--endured this suffering and this loss. Unnecessarily. I am sending you love from my heart to yours.

Dr. Joanne Cacciatore said...

Birdie_ I am very sorry. I wish you the very best in your health recovery process. May you be surrounded by caring others who are wise and experienced and circumspect.

((((Karla))))) Thank you mama. Thank you Theo for your mom.

Bug Family said...

Dear Joanne,

You do your family (this side and the other) so proud by all that you carry. I am so sorry for what you and your family have had to endure and continue to go through. Please know how much we all care. I hope this fact embraces you with some small measure of comfort.

Love, support, and hugs to you always.

Unknown said...

My deepest love to you Joanne and your family... may you all, forever, feel the presense of your mom & the love she had for each of you. I can only imagine how proud she is as she watches over her beautiful daughter whose love is the closest to agape as any I've ever known. LOVE. & BLESSINGS TO YOU MY FRIEND! While reading this post my mind traveled back to a few personal experiences I've had with desensitized medical staff. Especially the horrific, inhumane treatment I endured in the ER at the time of my daughter's death. However, a very special moment I had with my family doctor also came to my thoughts which reminded me how blessed I am to have him as my primary physician. I've been seeing Dr. Casey for over 5 years now and he is a very special Dr. Each time I find myself at his office I am amazed at his genuine care and concern he shows for my concerns & issues. About a year ago I felt as though I was falling back into the deep, dark, lonely walls of my grief over Sara. It was starting to feel almost raw like it did in the beginning. As I poured out my heart with tears streaming down my cheeks, I was all but requesting that he prescribe something for me. Dr. Casey gently touched my hand, compassionately disagreed on a prescription and softly asked me if I would mind if he prayed with me. Although I knew our faith and belief were the same, I was still quite surprised at his request but much comforted. How often is it a physician asks his patient for permission to pray with & for them? Our country needs more Doctors like Dr. Casey.

Bug Family said...

Dear Joanne,

I am so so sorry for what you and your family have endured and the continued pain that comes with it. I'm glad for the supportive and amazing medical staff who were able to help in the ways they could and am brokenhearted, angry, and shocked at the horrible treatment you've received from others. I just can't even imagine having to watch my Mom go through something like this. My heart and thoughts are with you.

Your family, this side and the other, I know are so proud of you for all that you carry and for all the positive things you do with your immense pain. Please know I, and so many countless others genuinely care. And I hope this fact embraces you in some small measure of comfort.

Hugs and Support,

Dr. Joanne Cacciatore said...

(((Michelle)))) Thank goodness for physicians like Dr. Casey. Deep bows to him indeed.

((((MOJ))))) I will be seeing *you* very soon. I look forward to meeting James' family!

Unknown said...

Knowing some of the pain which you feel, I echo most with the line, "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."

My lovely son, Eric, fought valiantly for two years against incredible odds, only to be tripped at the finish line by an arrogant doctor with the same attitude you saw above. Damn them all!

Dr. Joanne Cacciatore said...

(((Steve)))) Thank you for letting me share Eric's story. He should have never been treated with such disregard. Neither should you. I'm profoundly sorry.

Kiri said...

This post brought back to me the anger I still have, but am trying to let go of about my six year old daughter being sent home from the Emergency Department with a "virus" when it turned out they had missed advanced terminal cancer, despite knowing she was in remission after cancer treatment.
Her oncologist says they still could not have saved her if the relapse had been diagnosed one week earlier, but it would have made a difference to her quality of life for that week. We had just five more weeks with her.
The discharge notes said they had "reassured mum." As it turned out that was some pretty false reassurance.
BTW I read an older post of yours the other day (which now I can't find) that I felt was remarkably similar to the last post on my blog about accepting and making friends with grief.

Dr. Joanne Cacciatore said...

Kiri- Oh, I am so sorry. There aren't words.


The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night. Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

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