My husband Alan and I thought we had covered all the bases. We'd had hours of discussions about how much of what kind of care we would each want if we had a terrible disease, or at the end of life. And, even more important, what we would not want. We had each shepherded beloved family members through terminal illness, and held well-honed beliefs about quality of life. But I couldn't remember a single conversation about sudden death, resuscitation, and probable
brain damage.
Now as I huddled anxiously in the Emergency Department waiting room, the trauma team worked frantically to breathe life back into my husband. Forty-five minutes earlier, Alan suffered a massive heart attack and cardiac arrest as our flight awaited take off at O'Hare International Airport. I knew Alan's brain had been without oxygen for a perilously long time. While I chanted prayers for his survival, my mind careened between a wife's absolute belief that my husband would live, and my belief as a nurse that it might be more merciful if he did not.
A moral compass started to take shape in my heart and mind. This compass was a guide based on values, intentions, hope, and knowledge of the person Alan was now. These qualities combined with known and unknown medical information to point me towards hundreds of medical and ethical decisions I made on Alan's behalf.
On that critical afternoon, a resident physician in wrinkled scrubs approached from the trauma room and said, "Alan has been down for forty-five minutes and is probably brain dead. You should be prepared."
Although a physician passenger had come forward to start CPR on the plane, there was no defibrillator or medical supplies that might have optimized the effort. I screamed at the resident, "No, it's not fair! Alan didn't get a chance on the airplane. You keep doing everything possible. I want to give him a fair chance." In those early hours, I was stunned by how fast the heart attack had slammed Alan's heart to a standstill. We didn't even know that he had heart disease. Alan was a vigorous and passionately intellectual sixty-two year old man with a thriving family life and career. I made decisions for the only Alan I knew or could imagine.
In the beginning, hope felt huge and global, like a beaming blanket of sunshine spreading across the sky. I hoped that Alan would live. That his medical problems would be treatable and reversible. I hoped that he could go back to being the same fine person he had always been. That we would go back home to Boston and resume our contented and committed life together.
My moral compass pointed towards decisions that would give Alan every chance of recovery and a decent quality of life. But, even then, I had a sense of uneasiness about all the factors we couldn't know or control. Even as minute-by-minute decisions had to be made.
"You get back in there and keep resuscitating him," I yelled.
Fifteen minutes later, a female resident sat down beside me and said cautiously, "We did get a heart rhythm back. He is on a ventilator. Alan was alive.
Alan spent four weeks in the intensive care unit. A cascade of complications ravaged every system of his body. There were several times when the physicians gave me more grave news, and asked me to decide between one treatment that had potentially life-threatening side effects, and another treatment that might interfere with the beneficial actions of a current treatment. There were so many setbacks that I started to understand that if I became attached to one particular outcome, my hope for better days would be unsustainable. The neurologist warned me that Alan's brain might not be "viable" because of oxygen deprivation and all the complications. Yet no one could predict how the brain damage would change Alan's personality, cognition, memory, or life.
This is what it's like for every family after a loved one suffers a severe brain injury. Countless difficult decisions to be made, yet not much certainty about the outcome or long-range recovery. Widely encompassing hope, boundless love, and moments of terrifying dark reality. Uncertainly becomes a constant companion.
In the ICU it didn't take long to realize that we faced choices that could keep Alan "alive" but with no real quality of life. My moral compass began to shift from "I want to do everything" to a more tempered "I want to do whatever is in Alan's best interest as a critically ill, brain damaged man." Alan could not participate in any decisions, although I told him what was going on, and made sure every procedure was explained to him in advance.
The driving force in my decisions was Alan's ferocious drive to live. I firmly believed that several forces combined their powers to give Alan another chance at life. The expert medical care was absolutely a factor. Mysterious forces forged from prayers and energy sent by friends in every faith and spiritual tradition contributed their grace. But, it was Alan's unflinching will that bridged the gap between the limitations of medical care and his gradually improving condition.
He came out of the coma after only a few days, even though he was delirious and in tremendous pain for weeks. He possessed an innate sense that I was his wife, and shrieked if I left his bedside. We held hands as I tried to soothe him all day. One by one, many of the complications improved.
As I began to get to know this temporarily or permanently changed Alan, my sense of hope reshaped in response. While hope started out as confident and blazing as the sun, now hope felt as mysterious as the moon swathed in clouds, but sustaining in its own right. Now I hoped that I would make the choices Alan would make for himself. I recognized that I was still in shock, sleep deprived, and confused even though I grilled the staff and participated in every way possible. That's a common and often overlooked scenario for families.
When making decisions, I tried to separate my emotions from my intellect. I listened to my intuition, but made it speak out loud and label the pros and cons of my beliefs. I talked over the options with family who knew Alan best. I prayed for the wisdom and strength to make the best decisions. I admitted that Alan might not be restored to his former self, so I hoped and resolved that I would find the best rehabilitation possible to give Alan an optimal recovery.
Alan did live to leave the hospital, delve into years of rehabilitation, and build a new identity and life to go with it. After brain injury, survivors and families can spiral through tough decisions and ethical dilemmas for years. In future posts, I'll tell you more about Alan and several of the strange, complicated, and even bizarre decisions we were called upon to make. We kept a grip on that moral compass, and never gave up hope.
Resources
Chodron, Pema. Comfortable with Uncertainty. Shambala, 2003.
Kind, Viki. The Caregiver's Path to Compassionate Decision Making. Greenleaf Book
Group Press, 2010.
