For Philly patient safety advocate, stage 4 cancer diagnosis is not her defining label

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Amy Reed giving a thumbs up as she is transferred out of Penn’s intensive care unit to a regular floor.

On April 3, my wife, Dr. Amy Reed, had a cardiac arrest in a community radiology center.
 
At the time of this event, she was getting a CT scan to evaluate her stage-4 cancer, an aggressive malignancy called leiomyosarcoma.
 
Her improbable survival was miraculous. While we have no illusions about the dire nature of Amy's diagnosis, her visible and steady recovery has brought hope and optimism to friends and family, near and far. After one week in a coma and three weeks in the ICU, Amy has finally been transferred to the regular floor to undergo physical therapy in preparation for discharge.
 
The cause of Amy’s cardiac arrest was massive bleeding into and rupture of a large abdominal tumor. Just like a gunshot wound could cause life-threatening blood loss and cardiac arrest, Amy's tumor bled a large volume of blood into her abdomen and nearly killed her.
 
The type of injury Amy sustained would not normally be survivable outside of an acute care hospital setting. And she got nearly 50 minutes of CPR before arriving at Saint Mary Medical Center  - an exceptionally long period of time usually not compatible with survival.
 
A combination of immediate and persistent CPR, a breathing tube placed by the Yardley-Makefield paramedics, and the willingness of cardiac surgeons at Saint Mary to temporarily put her on a heart-lung machine, saved her life. Then she was flown by helicopter to the Hospital of the University of Pennsylvania (HUP), where she's received intensive care for the past three weeks.
 
Despite her incredible survival and superb care at HUP, I have been troubled by the assumptions and perceptions of some of her caretakers.
 
Because of Amy’s “stage 4 cancer” label, at every step of the way I’ve felt the need for defensive hyper-vigilance as her advocate and proxy. Metaphorically, I’ve had to build concrete walls around her to protect her.
 
Why? Because a large number of providers hear the “stage 4 cancer” diagnosis and assume that the struggle to save the patient with that label is “not worth the effort and cost” – or that it would somehow be more compassionate to let such a patient in an acute crisis “go in peace.”
 
Admittedly, Amy’s situation is rather unique. Amy and I are both physicians, so we know what she is up against, both in terms of the disease and the aggressive treatments she has undergone. Plus, she is young and very strong — and we have six young children who need her.
 
On the Monday morning of her cardiac arrest, Amy was active, independent, and certainly didn’t look like a “terminal” patient. The Sunday prior, she drove herself and our children to their weekend sports activities around Bucks County and spent hours outdoors. Amy lives for our children; every day counts, every minute is irreplaceable and invaluable.
 
Even so, her stage 4 diagnosis seemed her defining label after her cardiac arrest.
 
A physician present during Amy’s CPR said after about 30 minutes to “call it” – meaning to stop CPR and pronounce her irrecoverable and dead. He crashed into my concrete wall. The paramedics and I continued CPR aggressively.
 
Later, when she was in a coma, another physician suggested that opening up her kidneys to get them to function more normally would be futile care . He, too, crashed into my concrete wall. I immediately fired him from her care. Amy got her kidneys opened up and recovered normal function.
 
Another physician suggested that after three days in a coma, Amy was unlikely to wake up, and that our family ought to be thinking about “goals of care”— code for “withdrawal of care.” Another concrete wall. The answer was “No! So long as there is a reasonable chance of recovery, we/you will push hard.”
 
When Amy had respiratory difficulties in the ICU after her breathing tube was removed, a physician suggested that she be assigned a “Do Not Intubate” status, a terminal state. He crashed into the wall, too. Instead, Amy received aggressive respiratory therapy and has recovered well.
 
As her proxy, had I accepted any of these defeatist propositions — as many patients and their proxies are convinced to do every day around the country — Amy would likely not be with us now.
 
I’m not suggesting that there are no circumstances where suffering ought to be alleviated and terminal conditions accepted with dignity. There certianly are.
 
But I believe healthcare practitioners should be in the business of creating miracles of hope and recovery.  
 
The good doctor recognizes that the contour of each patient’s hope, health, and quality of life is highly personal and unique. The good doctor is there only to provide the crutches and balm needed to walk the perilous path of illness as smoothly as possible – outside the constraints imposed by diagnostic labels, "one-size-fits-all" algorithms, corporate agendas and personal beliefs.