
DATE: Friday, June 27, 1997                 TAG: 9706270654

SECTION: FRONT                   PAGE: A1   EDITION: FINAL 

SOURCE: BY DEBRA GORDON, STAFF WRITER 

DATELINE: CHARLOTTESVILLE                   LENGTH:  308 lines

U.VA. NURSE HELPS EASE JOURNEY TO DEATH

They call her the Death Nurse.

Gail Weatherill is a hard-bitten registered nurse with a twangy Southern accent who spent 14 years in the intensive care unit at the University of Virginia Hospital until, tired of ``sticking needles in dead people,'' she invented a new job for herself.

The title on her office door says Supportive Care. But Gail, 40, describes her job differently. She helps people die. Not actively, like those who espouse assisted suicide, but from behind the scenes.

It is a job that provides her with a unique perspective on Thursday's Supreme Court ruling that Americans don't have a constitutional right to doctor-assisted suicide.

People wouldn't be asking doctors to help them die, she says, if the philosophy that underlies her job were more prevalent.

She helps families - and patients, when possible - understand that just being alive isn't the same thing as living. She helps doctors and nurses, who often view death as a failure, see that sometimes death is a gift.

It's a rare job. Only a few hospitals in the country - and no others in Virginia - have a Gail Weatherill.

She doesn't work in a hospice. Instead, she works to get dying patients into hospice. To unhook them from the machines keeping them alive in high-tech intensive care units and turn them over to a group of people who understand the meaning of a ``good'' death. Free of pain, free of machines, at peace with their families.

Thursday's Supreme Court decision, which supports two state laws making it a crime for a doctor to help patients die, ``is a be-u-tiful thing,'' she says.

For while Gail advocates removing a breathing tube from a dying man or stopping dialysis for a brain-dead woman, she draws the line at active intervention.

``Taking them off the vent is eliminating an artificial process that is imposed on a person so nature can proceed. That is very different from getting a syringe and giving them the juice.''

Gail Weatherill spends most of her time in the medical intensive care unit, one of the eight intensive care units at the University of Virginia hospital. She calls it the ``miracle ICU.''

She named it that many years ago not for the miraculous recoveries that sometimes happen there but because to Gail, death is the ultimate miracle. And someone dies in the MICU an average of every three days.

Every morning, after rounds in the other ICUs, Gail ends up in the MICU. With just a glance into each of the 12 glass-walled rooms, her nurse's intuition tells her whom she'll spend the most time with.

Today, it's 38-year-old Julie.

The woman has been in the MICU eight days, ever since she went into cardiac arrest at the hospital where she was being treated for a fever of unknown origin. In someone like Julie - whose kidneys have failed and who is on dialysis - a fever may signal a potentially dangerous infection.

No one knows how long Julie's brain had been without oxygen before she was resuscitated. And no one knows how much brain function she has left.

Now she lies on her back, a ventilator tube taped to her mouth, its hose snaking down her throat. An IV drips saline solution, narcotics and blood pressure medicine into a vein. A cardiac monitor tracks her heart as the hiss of the ventilator provides a steady beat of background sound.

Although her eyes flutter open and closed, making her appear as if she's awake, they are the involuntary movements of someone in a coma.

Her mother has accepted that Julie isn't going to wake up and has asked that life support be discontinued.

But Julie's father, who lives in another city, isn't so sure. He wants to hear something more definitive from the doctors.

Her parents are the ultimate decision-makers. Like many people who wind up in the MICU, Julie doesn't have an advanced directive, a document that specifies what kind of intensive care she wants if she becomes incapacitated or terminally ill.

Which is where Gail comes in.

She never asks families if they want to remove someone from life support. Instead, as in her discussions with Julie's parents, she asks them what they believe the patient would have wanted.

She tells families this is a decision they will have to live with for the rest of their lives. That if they need more time, they should take it. Rarely is there immediate agreement. Often, individual family members are on different timelines when it comes to accepting a patient's impending death, Gail says. Part of her job is to help the families - and, often, frustrated staff members - understand this and be tolerant of ``each other's journey to the truth.''

As Gail sits at the MICU nurses' station paging through Julie's 3-inch-thick chart, another nurse comes up and begins sharing the story of her godfather, who was dying of prostate cancer. He had just had a stroke and was being kept alive in a vegetative state.

``This is his worst nightmare,'' the woman says. ``The one thing he wanted to avoid.''

Everyone tells Gail their death stories. ``They figure, `You do it for a living every day, so it's a safe place to talk about it,' '' she says.

The nurses, in particular, turn to Gail. They know she'll understand.

In an ICU, it's the nurses who are the primary care-givers. They spend hours with the patients, turning them, suctioning them, bathing them. They administer the aggressive treatment the doctors order even when they strongly believe the patient should be allowed to die in peace.

Gail did that for 14 years. Then she read an article about a unique practice at Detroit Receiving Hospital, where nurse practitioner Margaret Campbell worked to transfer dying patients from the ICU to a comfort care team specializing in symptom control at the end of life.

In the process, Campbell did a lot of teaching and counseling about dying a good death.

``What we've set up here is a climate in this hospital that acknowledges the reality of death,'' says Campbell. ``That death is not a medical failure.''

Gail met with Campbell at a conference in 1994 and came back ``fired up'' to begin a similar program at U.Va. She found a supportive administration, impressed by studies Campbell had conducted that showed her practice was not only emotionally helpful, but financially beneficial, with shorter lengths of stay for dying patients.

``It was something we felt was tremendously needed,'' says Anne Chalam, until recently U.Va.'s cancer service administrator and Gail's boss.

``People are fearful, scared of pain, loss of control. And that it's a subject people don't necessarily like to discuss.''

Gail, with her ability to relate to a broad variety of people - from the sophisticated intellectuals of a university town to the Medicaid patients from the surrounding rural communities - gets the discussions started, she says.

She also brings an objectivity to a case that is often difficult for doctors and nurses, so focused on that patient, to have.

``A lot of us don't know what to say because we're so uncomfortable with death,'' says Dr. Paul Kim, who is completing a fellowship in critical care medicine at U.Va. ``When someone who is not part of the team says this is ridiculous, it's time to stop, we listen.''

There are downsides. While he respects Gail and thinks she does a great job, MICU medical director Dr. Jonathan Truwit says she occasionally oversteps her role as a consultant.

``When you have another person involved as primary communicator, you want to be sure that person is representing what the team understands is going on, and not his or her biases.''

Gail worries every day about the values and motivation underlying her counseling. She faced it as an MICU nurse, where she worried that she might be advocating an end to aggressive care not because of the patient's condition, but because of the pain she felt she was causing by providing that care.

``This would all be easier if you could program it into a computer,'' she says. ``But you could never program the computer for the nuances.''

And the issues of withdrawing support, of assisted suicide, of when and how to die, are only going to get more complicated as health care becomes more concerned with costs, she predicts.

``When you talk about the slippery slope, it's there. Greed is part of the human condition.''

Two years ago, U.Va. opened a six-bed hospice unit just down the hall from the MICU. This is where many of the patients Gail works with end up.

On this unit, there is no pretense at prolonging life. Here, the only goal is making what life remains comfortable. Although there is a medical director for the unit, he is rarely on the floor. The nurses pretty much run the ward.

They have standing orders to dispense as much morphine, fentanyl and other narcotics as needed to keep patients pain-free. To order in Chinese food if that is what a dying patient - or his wife - requests.

Here, in the hospice's small office, where a coffee cake or doughnuts are always on the cluttered table, where the bulletin board is filled with notices about seminars on death and dying, Gail and the hospice nurses decompress.

``I've got a 34-year-old on the SICU (the surgical intensive care unit) with ovarian and cervical cancer I'm probably sending over to y'all,'' Gail says, sipping a cup of coffee.

How do they deal with it? Day in and day out watching people die.

Gail stays sane through her children. ``I do the death thing all day long and then go home and my 8-year-old is worried about what she's going to wear to school, and my 5-year-old is running her bike up a tree.''

And she's developed her own philosophy to cope with the dying.

She focuses on a passage written in the 1500s - when the dying were revered because ``Heaven is open to their eyes.''

``That is what you get from being around dying people,'' she says. A sense of reverence. Of spirituality. Of otherworldliness.

But it doesn't mean she wants to move her patients there prematurely.

``The two sides of (assisted suicide) are presented as being fairly straightforward, and real life is almost never that simple,'' she says. ``Patients have a hundred different variables that affect a decision to request assisted suicide.''

Do they fully comprehend their condition and treatment? Have they exhausted all reasonable treatments? Are they suffering from depression?

``What worries me is, who is going to evaluate the answers to these questions in individual cases?'' Particularly given the confusion she sees today over implementing living wills and advanced directives.

``The potential for abuse is too great to pursue assisted suicide in health care.''

It's Day Nine of Julie's MICU stay, and the residents and attending physician are gathered outside her room on their morning rounds. Gail listens intently.

``This lady is not waking up,'' Truwit says. ``We need to know why she's not neurologically intact. That's the major thing the family wants to know.''

He thinks they can wean her off the ventilator. But that poses a larger question: Do they continue dialysis?

``You haven't given me a reason as to why she's not going to improve,'' he says to his residents. ``I'm having a hard time saying that dialysis is futile.''

These kinds of discussions occur every day in the MICU, underlining the uncertainty inherent with the very sick. The shadows of gray that color dying.

Even among the medical team there may be disagreement.

Medical resident Jeffrey Skiles notes that Julie was angry when her life was saved after a transplanted kidney failed. She had said she didn't want to live the rest of her life on dialysis.

``It's not an unreasonable response to stop the dialysis,'' he says.

``But what if the mom says yes and the dad says no?'' Truwit asks.

Mary Wood, Julie's nurse, argues that the mother has been with her daughter throughout her chronic illness, and knows her wishes more.

``So does that mean if the wife spends more time with the kids, she gets to make 80 percent of the decisions?'' Truwit challenges.

``No,'' says Gail. ``It means, who is in a better condition to say what her wishes would be?''

``I think dialysis buys her time to see if she gets any better,'' says Truwit. ``Let's give her a week. If there's no improvement, we've just increased the hospital bill.''

``So she'll lie around for another week and get no better and then we'll stop?'' asks Mary, clearly angry.

Before Truwit can answer her, the neurology residents enter the unit and huddle in the corner. This is the consultation Truwit has been waiting for. He hopes it will answer the thorny dialysis question.

``The prognosis for functional recovery is not good,'' says the neurologist. ``But it's not impossible. While the prognosis is not good, I couldn't say it's poor.''

The residents and Truwit look at one another. This isn't the clear answer they were hoping for.

They decide to continue dialysis.

``I think it's wrong and we're going to do the mambo and a week later stop,'' Mary says.

The ``mambo'' is MICU parlance for the torture dance, the pain inflicted on dying patients when the nurses have to turn them every two hours or suction their ventilators - described by one MICU patient as ``sticking red-hot pokers down my throat.''

``Death by mambo in the MICU,'' the nurses call it.

Gail listens to Mary. Validates how she's feeling. But her mind is on Julie.

From Julie's mom, she learned that Julie was a fiercely independent woman, who, even while critically ill with a failing kidney, refused to move back home. That she was a fixture in her church, carrying food to older people in the neighborhood, driving them on errands.

Because Gail knew who Julie was before, she understands why she would not want to live like this, tethered to machines.

But she also understands the need for consensus among the family. And she knows this prognosis isn't going to give Julie's dad the certainty he is looking for.

She goes to Julie's parents and tells them the doctors want to wait a bit longer.

Later that afternoon, she returns to the MICU and looks at Julie's chart.

``Prognosis is a persistent vegetative state,'' the neurologist wrote.

Seeing the words in black and white, ``persistent vegetative state,'' suddenly makes things clearer.

The team, including Gail, go back to the parents. The decision is made to withdraw all life support - including dialysis.

Why didn't the neurologist just say what he wrote? the staff asks.

``I know (the neurologist) felt we wanted a definitive statement,'' Truwit says, ``but we wanted what he really felt. He was better at the note. It was very succinct, very clear. He knew what that note meant given (Julie's) clear statement to her family in her prestated wishes.''

Gail heads over to the hospice to brief the staff that Julie is coming.

It is finally quiet in the glass box that has been Julie's room for the past 10 days.

The ventilator is turned off, the tube removed.

Julie breathes through her mouth now, a gurgling sound with each breath from the fluid building up in her lungs.

Several Mylar balloons attached to her bed bob down by her face. ``Get well soon,'' they say. ``Have a speedy recovery.''

Mary and Gail move around her, unhooking tubes, pushing machines out of the way. And they never stop talking to her, even though they know she can't hear them.

``It's OK, Julie,'' says Mary. ``You're going to a better place than here.''

Mary pushes the sliding glass door wide open and the two wheel Julie's bed out the door, across the floor, and, finally, out of the MICU to Room 3137 on the hospice unit.

Julie's parents have left. There's no reason to stay anymore.

The hospice nurses will call when Julie finally dies.

Over the next day and a half, Julie's breathing slows. Her arms and legs cool as her body concentrates its efforts on sending blood to vital organs.

She is often restless, and plucks at the bedclothes as the oxygen supply to her brain diminishes and as other metabolic changes occur.

Throughout, the hospice nurses provide loving care. They keep her pain-free with fentanyl. Give her drugs to decrease the secretions building up in her lungs so she can breathe more comfortably. They sit by her bed, rub her head, talk to her. Sometimes they play soft music on a tape player.

She dies a day and half after entering hospice. Quietly. Naturally. In an oversized room filled with sunshine.

Epilogue

On Thursday, Gail Weatherill will leave her job at U.Va.

Seventeen years of staring death in the face is enough, she says. She needs a rest.

She doesn't know what she'll do next.

And U.Va. officials don't know if they will replace her. ILLUSTRATION: [Color Photos]

TAMARA VONINSKI photos/The Virginian-Pilot

Registered Nurse Gail Weatherill visits with a patient who told her

she was dying and needed help. Gail later spoke at length with the

family and doctors to help them reach a decision about hospice care.

For Gail Weatherill, dying is the ultimate miracle, but she opposes

physician-assisted suicide.