Barbara Sofer

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THE HUMAN SPIRIT: BEHIND THE CLOAK IT'S ALL ABOUT CONSCIENCE

By Barbara Sofer

March 31, 2019

When my late mother, then an elegant nonagenarian, was hospitalized with congestive heart failure, lung problems and a broken hip, in a terrible tense moment, we had to decide whether to allow a tracheostomy. Without it, she couldn't breath and would die almost immediately.

My instincts to save my mother, my unrealistic belief that maybe she could be weaned from the tube, and the Jewish ethics by which I try to live my life converged for me to give permission. There was also something else. My mother had told my son, a doctor, that she wanted all interventions to prolong her life.

The many months that followed were horrendous for my mother, who suffered much pain and who could never speak again.

That decision has tortured me for nearly a decade since her death.

This week, at Hadassah-University Medical Center in Jerusalem's Ein Kerem, I had the privilege of emceeing a colloquium panel of medical professionals called "Wrestling with My Conscience: My Hardest Medical Dilemma." The catalyst was the inauguration of a sculpture called the Cloak of Conscience – not at a museum but at the portal of the hospital. The polished gold-bronze 125-centimeter-high sculpture depicts a faceless figure of Conscience enveloped in folding cloth. Arriving from France was the award-winning artist who donated her sculpture, Anna Chromy, a European who still looks toward Jerusalem as a citadel of ethics.

To speak of conscience – matzpun in Hebrew, damir in Arabic – we might have called on philosophers, theologians and, yes, geneticists who insist that conscience is imprinted in our human DNA. Thinkers have for millennia attempted to define the source of our desire to do right or, as physicians promise, to "do no harm." Some call conscience our inner compass, others our troubled heart.

Some argue that it's our duty to obey; others that it's our duty to disobey. In Judaism, we have a concept called "going beyond the letter of the law," which means fulfilling an obligation despite a loophole that would let you out of it. The highest authority, even in a God-based set of laws, is conscience.

A million patients pass through the doors of Hadassah's campuses each year, so many personal decisions must be made by doctors, nurses, patients and loved ones. Many, like mine, aren't strictly medical dilemmas, but involve quality of life and carrying out what our loved ones would want, if we'd been brave enough to ask. In that sense I was lucky. I knew what my mother had asked for, although it's impossible to know if she regretted her decision.

AT THE dedication of the Cloak of Conscience, it was time to forgo the philosophers and ask veteran staff members to be frank about the toughest decisions they've wrestled with over their careers.

"Nothing prepares you for the moment the numbers fail us," said Dr. Luminita Eid, a Romanian-born intensive care specialist. "Who knew, when we took our oath to be physicians, wild and free-spirited souls, that a day would come when every single one of us would understand and feel the full meaning of the oath we swore."

For her, the day came in Israel when she was an experienced anesthesiologist, and was consulted on a patient in her early 60s with both heart failure and cancer. Six years later, she still feels guilty that she didn't have the courage to tell her patient she would die soon, with or without surgery.

"Nor does anything prepare us for the moment when we have to stand alone, look into our patient's eyes and, yes, sometimes tell them what they don't want to hear. It's a moment when empathy can help but is not a replacement for the truth," she said.

For Naela Hayek, head nurse in the Division of Intensive Care and Emergency Medicine, the trauma of not being able to contact her husband, Aeid Hayek, a Jerusalem police officer, during a terrorist attack was compounded by the arrival of the terrorist together with her husband's severely wounded fellow officer named Avi to Hadassah Hospital, where she was working.

"I had danced at Avi's wedding three months earlier," she said. "It was before cellphones and I couldn't get in touch with my husband. At the police station, they kept saying my husband was probably busy."

Aeid eventually turned up at the hospital, unhurt but accompanying other wounded officers.

"He was in the car behind Avi's this time. Al-hamdu lilah, he was okay. But there I was, a young Arab nurse, in the recovery room, having to treat the terrorist who had attacked my husband's partner. Did I take care of him? Of course I did. That night I understood the harsh reality of Jerusalem and what it means to be a police officer's wife and a nurse. I still shake when I think of it, but I believe we grow our souls from such challenges."

For transplant surgeon Samir Abu Gazala, the touch-and-go decision to risk transplanting a healthy liver into a patient whose liver disease was not his only malady – risking two patients by using a healthy liver that now another patient couldn't get – still haunts him, even though the patient happily survived.

Prof. Charles Sprung is both a doctor and a lawyer. He was caught between the conflicting wishes of the son and daughter of a gravely ill patient. The son believed his father would want to struggle on, no matter the pain, and the daughter, a nurse, believed her father had suffered enough and heroic efforts would only prolong his suffering.

"This went on for seven months. There are some things worse than death," said Sprung.

In the end, when the patient further deteriorated, Sprung made "a medical decision" not to increase the aggressiveness of the treatment. He knows he made the right decision but still often thinks of it.

The speakers represented all three Abrahamic religions and were remarkably similar in their ethical approaches. Likewise, no one bothered to mention the ethnicity of the patients.

LISTENING TO all of these reports was former deputy president of the Supreme Court and former attorney-general Elyakim Rubinstein, who, as part of the ceremony, received the Chromy Award for "personalities blessed with an exemplary conscience."

A judge doesn't make the same life and death decisions every day the way doctors and nurses do, Rubinstein said. Nonetheless, his decisions did sometimes impact life and death.

Among the most difficult cases for him personally was getting imprisoned terrorists to give up their hunger strike. When he allowed patients with ALS to have their ventilators mechanically turned off, he was cursed as a murderer.

"I didn't like it," he admitted.

But of all the decisions he had to make in his long career, the hardest were adoption cases.

"It's heartbreaking to take away children whose parents love them but can't care for them. Keeping in mind the child's future is what helped me make these tough decisions. Love alone is not enough."

No, love is not enough when faced with such decisions, as so many of us know. Thinking of my own difficult decision, I was comforted that all the speakers – professionals in their fields – were also still wrestling with their consciences years and decades after they'd made hard choices. That still, small voice, forever whispering, is what makes us human.

 

 

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