Doctors facing 'painful' ethical issues

By Timothy J. Gibbons
Published by Florida Times-Union on October 24, 2003.

As head of Brooks Rehabilitation Hospital's department of psychology, Cynthia Beaulieu is no stranger to issues of mortality.

But discussions about life and death and handling the transition between them bring two patients to mind. One was a young boy, brought to Brooks after nearly drowning.

The other was Brooks' younger brother, injured in an industrial accident.

On that day, six years ago, Beaulieu had to concentrate on her professional side, helping her sister-in-law make the same sort of decisions the little boy's parents wrestled with: How much care is too much? When does life end? What's the best thing to do?

As legislators in Tallahassee and pundits across the nation debate what should be done with Terri Schiavo, the severely brain-damaged woman who remains in a persistent vegetative state in Clearwater, medical personnel on the First Coast go about their business, many of them knowing that they may have to help families make similar decisions about their loved ones.

Although persistent vegetative states are rare, doctors still must deal with patients who become incapacitated before letting their wishes be known.

The ethical issues revolving around end-of-life situations have been debated for years, and the rise of patient rights advocates has led many hospitals to establish ethics commissions to make sure such decisions are handled properly.

Doctors use four principles to guide them in treating patients, said Vincent Ober, who chairs Shands Jacksonville's Ethics Committee

The major principle -- and the one at issue in the Schiavo situation -- is autonomy: What would the patient like to happen? This is easy to determine when the patient can talk or has left written instructions, but can be more difficult when family members have to decide.

The other three tenets doctors try to live by are do no harm, do good and be just, Ober said, but in the end, they don't make the decision -- patients and their surrogates do. And those decisions can go in a direction the doctor wouldn't recommend.

"It's painful," Ober said. "All of us have strong ideas about what we do and do not want done to us. If I'm going to respect individual autonomy I'm going to have to let patients do things that I wouldn't do."

Individual autonomy becomes a difficult concept to hold to when doctors aren't sure what the individual really wants.

That's the big question bioethicist Assya Pascalev, an assistant professor at the University of North Florida, had about the Schiavo situation. "No one has said what evidence we have of the authentic wishes of the woman," she said. "The issue is her own life, her own decision."

That's why Sherry King, chief medical officer for Community Hospice of Northeast Florida, has taken her sons aside and made sure they know what she wants if a disaster befalls her.

Patients who come to hospice are usually near death, and few come without already having given some thought to what measures they want taken. Although doctors aggressively treat the ills they can do something about, oftentimes all they can do is make patients more comfortable.

Some patients, though, say they don't know they're near death, King said, leading to a conversation where hospice workers can draw out what their wishes are.

"I have patients who chose to stay in a relative amount of pain because they want to stay lucid, to talk to their families," she said. "We consider ourselves to be treating family as well as treating the patients. We try to help everyone come to terms with what's happening."


Persistent vegetative state

Patients in persistent vegetative state and those in coma are unconscious. There is a distinction between them in their level of arousal and awareness, according to Russell Addeo, manager of the Neurorehabilitation Day Treatment Program at Brooks Rehabilitation.

Coma: Generally confined to patients whose eyes are continually closed and who cannot be aroused to a wakeful state. It is usually traumatically induced. Most patients who are in coma and who come out of it, generally do not go through a vegetative state (because along with opening their eyes, they also start to show some increased cortical function -- like fixating on objects, coordinated motor activity, following commands, and speech).

PVS: Patients have eye movements, periods of wakefulness and withdrawal to pain. However, there are not consistent responses that would suggest that theirs is a working, functioning mind. No words are uttered. No commands are obeyed. There are no meaningful emotional responses. They generally have no awareness of self and/or of the environment; they may respond reflexively to pain, but probably do not experience the pain. Another element of the distinction is that PVS is by definition persistent, and not temporary.


This is a showcase of the work done by Timothy J. Gibbons during a journalism career now stretching back more than a decade.

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