TREATING THE TERMINAL

Is it ever acceptable for doctors and nurses to actively take part in a patient’s death? Many would say no, and perhaps cite the unambiguous commandment, “Thou shalt not kill.”

Not long ago, I read in the Boston Globe about parents who found themselves in the excruciating position of considering speeding the death of a child with terminal cancer and in merciless pain. And I was reminded of a child I met a few years ago. I’ll call her Ari, though that was not her name.

Ari was about four when I knew her. She didn’t say much. Mostly she turned her bald head away from me and tugged on her mom’s arm, the signal from a child in chaos that Mom had spent enough time with me.

Ari and her mother were camped on the hematology/oncology ward at Children’s Hospital in Boston when my wife and I were there with our daughter. They were back again some seven months later when I read on their Carepage blog about the choice Ari’s parents and doctors had made. Treatments had failed. Ari was terminal, in sedation-masked agony, and on a respirator. Her parents’ excruciating choice was to remove the respirator. They said goodbye. She died quickly.

Ari’s parents didn’t kill their daughter, and neither did the doctors. Cancer did that. The cancer untreatable, the doctors helped the parents and Ari accept the harsh truth of death, and compassionately treated her agony.

I’ve not been in that position myself, and find the decision-making process nearly impossible to imagine. But I’ve spent an unusual amount of time lately trying to imagine it. I’ve been thinking about it more than I ever expected or wanted to, as a member of the Community Ethics Committee, or CEC, of Boston. The CEC exists in the space between “Don’t just stand there, do something!” and “Don’t just do something, stand there.” Original members have been meeting monthly for three years, considering questions brought by doctors and nurses within the Harvard teaching hospitals. The idea was to go into the community in search of societal thought on issues of ethical intractability.

I missed the first study, when the committee struggled with the ethics of pediatric organ donation on cardiac death. I joined in year two, when the CEC was already in the first-draft stage of a report on CPR. I entered the conversation with an opinion I thought was a no-brainer: That CPR is automatic, and should be, when the heart stops. Turns out, the CEC isn’t a safe haven for no-brainers. What if dying is in process? Should a dying person’s last moments feature electric shock, broken bones and pointless violence, if it isn’t the patient’s condition that demands CPR, but family not yet ready for death to take place? Should a doctor be required to perform a brutal procedure for the family’s sake knowing it to be harmful to the patient?

Now the CEC is considering the ethics of palliative sedation, trying to shine a light on the line between assisted suicide and aggressively treating severe and intractable pain in a terminal patient when expedited death is a likely result. Cures common today didn’t exist not long ago; my daughter is the beneficiary of one of them. But each therapeutic advance brings new questions about the ethics of medical intervention in the process of life and death.

Ari had some of the same doctors and nurses as my daughter, but for us, the hard choices were about complications and possibilities, and never about imminent death. Ari’s disease was terminal, my daughter’s life-threatening. Hope resides in the distinction.

The work of the CEC is humbling. We’re parents and children, clergy and lawyers, educators and administrators, from an impressive ethnic, cultural and socio-economic cross-section of Boston.

The New York Times columnist Roger Cohen once wrote of his grand-jury service: “I was struck by how rare it is now in American life to be gathered, physically, with an array of other folk of different ages, backgrounds, skin colors, beliefs, faiths, tastes, education levels and political convictions and be obliged to work out your differences in order to get the job done.” He’d like the CEC. We’re essentially a group of people looking for clarity in a fog that doesn’t lift.