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Published: Sunday, 1/14/2001

Learning to live with the dying

BY LUKE SHOCKMAN
BLADE STAFF WRITER

Editor's Note: At some point, most doctors hear the question: "How much time do I have left?"

Death. Despite its inevitability, physicians often struggle with how to prepare their patients for the end. Some doctors -- with the best of intentions -- don't want to accept defeat.

And yet everyone loses eventually.

Medical schools across the country, including the Medical College of Ohio in Toledo, have begun to embrace new ways of teaching the next generation of doctors how to deal with dying patients.

Blade health reporter Luke Shockman spent several days with Danielle Barrow last month during her two-week rotation in Hospice of Northwest Ohio. For privacy reasons, the names of most patients have been changed.

“It's OK to cry. It happens to all of us.”

Hospice employee Dale Finn is sitting in a brightly lit library on the second floor of Hospice of Northwest Ohio. Before her sit two medical students from the Medical College of Ohio, Jason Kim and Danielle Barrow.

Over the last few minutes, Ms. Finn has tried to explain to them that the next couple of weeks are going to be a much different experience than what they're used to.

“Do you have any concerns about working here?” asks Ms. Finn, education coordinator at the hospice.

Mrs. Barrow, 28, a Maumee native and third-year medical student at MCO, thinks a moment, then responds: “I just worry about simple things. I mean, in the hospital sometimes, I have to leave the room because I'm crying.”

Ms. Finn smiles and reassures her. “It's OK to cry. It happens to all of us.”

Laurie Phillips, the hospice's director of clinical services, comes into the library to summarize the facility's philosophy.

“Someone once said, `Hospice is Lamaze for the dying',” she tells them. Like a couple preparing for birth, dying patients and their families are preparing for death. It's never easy, but it can be made easier, she advises.

Ms. Phillips tells them there are three main things to keep in mind: think about how to control a patient's pain; allow patients and their families to talk about death; and make sure patients and families have the information they need to make informed decisions.

The next two weeks will be a radical departure from previous or future medical training, she tells them. The medical community has begun to realize that doctors have been, and continue to be, woefully undertrained when it comes to end-of-life care.

To be sure, there are many physicians who are masters at guiding their patients through their final days. But those doctors mostly have learned their skills on the job, The Blade reported in a story Sunday.

In the last few years, more and more medical schools have begun trying to implement end-of-life training into their curriculums. Use of hospice has grown dramatically. It's estimated that 700,000 people used hospice in 1999, up from 540,000 in 1998, according to the National Hospice and Palliative Care Organization.

As part of their medical education, some MCO students spend two weeks working in the Hospice of Northwest Ohio in Perrysburg Township. Hospice care focuses on providing “comfort care” to those with a terminal illness.

A Hospice of Northwest Ohio patient is visited by registered nurse Diane Smith, at left, Dr. Marc Huntoon, hospice medical director, and Medical College of Ohio students Danielle Barrow and Jason Kim. A Hospice of Northwest Ohio patient is visited by registered nurse Diane Smith, at left, Dr. Marc Huntoon, hospice medical director, and Medical College of Ohio students Danielle Barrow and Jason Kim.
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It's time. Mrs. Barrow listens as hospice nurse Diane Smith goes over the medical history of three patients Mrs. Barrow will be seeing.

The first is “Cindy,” 45, who has been in the hospice a while and is rapidly getting worse. She's not real close to her family. When she is conscious, the worst thing for Cindy is fear of dying. She hasn't yet accepted that she has only days left to live. But the cancer ravaging her body won't wait much longer.

Next is “Bob,” who is barely conscious because Non-Hodgkins lymphoma is slowly sapping his strength. His wife has been at his bedside almost around the clock.

Kay (her real name) is actually doing pretty well. She has cancer, but she's alert and is usually in pretty good spirits. Ms. Smith tells Mrs. Barrow that everyone loves visiting with Kay, who has to wear a brace around her neck because cancer has weakened her bones.

After hearing the reports, Mrs. Barrow begins asking questions. How many times should she take their vitals? What do you do if they're not eating? How thorough should she be in the examination?

It's all confusing for her, Mrs. Barrow says. She's used to taking vitals, talking to her patients, and ordering or reviewing test results.

“I don't know what to tell you ... this is comfort care,” Ms. Smith says gently. “Just ask a lot of questions. We're not throwing medicine at them.”

Mrs. Barrow leaves the nursing station and begins walking toward Kay's room.

“I'm not sure what approach I should take,” she says.

Christmas cards hang on the wall inside Kay's room, and a miniature village sits on a table. A little Christmas tree sits by the window. Kay says she's a little annoyed that the light in the star isn't working.

“Is your pain well controlled?” Mrs. Barrow begins.

“Yes,” Kay responds, noting that things are about the same today as they were yesterday.

Kay seems a little reluctant to share too much. She points out that she's gone through lots of medical students. They come and go every couple of weeks. Most ask the same questions, want to know the same things, and poke her in the same places, she says

Mrs. Barrow stops asking medical questions for a bit and asks what else Kay has been doing. Kay mentions that she got to leave the hospice a few days ago to visit a new condo she bought. Some friends came and got her and took her around. She appears to brighten a little when she talks about this.

Mrs. Barrow leaves the room and begins reviewing Kay's chart and making a few notes.

“This is such a different mentality,” Mrs. Barrow says. “It's a change of gear. In school, we're taught to be so complete.”

She enters Bob's room. The only sound in the room is of Bob's slow, labored breathing. He's lying flat on his back with his eyes closed. His hands are clasped on his chest, as if he were praying. His wife sits nearby and looks up as Mrs. Barrow approaches. She's been crying.

“How are you doing?” Mrs. Barrow asks Bob's wife.

“Oh, OK,” is the reply. “Just taking it one day at a time.”

She sniffs, and Mrs. Barrow quickly asks if she has a cold.

“No, just the blues.”

The room is brightly lit today, and sunshine streams through a window. But Bob's wife looks beaten down. Her clothes are wrinkled. She often sleeps in a chair or on a cot in the room.

Mrs. Barrow pulls up a chair and quietly talks with Bob's wife. She asks about how Bob, her husband of 38 years, is doing and if she thinks he's in any pain.

“Does he talk to you?” Mrs. Barrow inquires.

“Oh yes,” his wife replies. “And if I leave, he watches the clock until I come back. He's so afraid he's going to start choking and no one will be here.”

Mrs. Barrow is clearly taking a different direction with the conversation. “How about you? How are you dealing with this? Who do you have to talk to?”

“My minister. And I have really good friends,” Bob's wife says. “I just do the best I can.”

Mrs. Barrow begins to gently examine Bob. He wakes up and weakly mumbles something.

“It's OK, I'm just checking your legs,” Mrs. Barrow says as she pulls back the sheets.

After a few minutes, she leaves the room and begins reviewing Bob's chart. She hopes she's doing OK in this new endeavor.

In a couple of days, Dr. Marc Huntoon, medical director, will make rounds with her and Mr. Kim. Will he be tough? Will he ask her things she doesn't know? How does she prepare for his questions?

Today is the day when Dr. Huntoon shows up and follows her. Mrs. Barrow has arrived early before rounds begin and is examining Cindy.

“I think she's close,” Mrs. Barrow says quietly.

Cindy's breathing sounds strange to Mrs. Barrow, almost like rasping or rattling sounds. She leaves the room and informs the nurse.

“Yes, that is a change,” the nurse says. “We typically see that [shortly before death].”

As she stands in a hallway outside Cindy's room, Mrs. Barrow says that the nurses yesterday called her into a room just minutes before a patient died.

“I watched [the patient] take their last breath,” she says, still struck by the experience.

She goes back into Cindy's room and touches her arm to take a pulse. Cindy stirs and begins to try to get out of bed.

Mrs. Barrow gently restrains her. “Lay your head down, sweetie,” she says as she runs her hand through Cindy's hair.

After a minute or two, Cindy calms down and falls back to sleep.

Mrs. Barrow leaves Cindy's room and talks with the nurse again.

“She's close. I'd say tomorrow or Saturday,” the nurse says. “The only thing she said to me all day yesterday is, `I'm afraid.'”

Mrs. Barrow hurries to see Kay. Unlike Cindy's room, which is dim and quiet, Kay's room is bright, and Regis is on TV shouting about something. Kay mentions she's looking forward to another visit to her condo this weekend.

Mrs. Barrow checks in with Bob. His wife is there with some friends who have stayed the night with her in Bob's room. She's grateful for the companionship.

Bob, however, isn't doing much better. He doesn't stir when Mrs. Barrow takes his pulse. She says good-bye to Bob's wife and leaves the room.

It's now time for the hospice's weekly “team,” a meeting where the nurses, chaplain, social workers, and Dr. Huntoon go over the patients and how they're doing.

Dr. Huntoon, 41, is an anesthesiologist at MCO. He's been hospice medical director about a year and says he's enjoying trying to get medical students to look at patient care in a little different way.

“The biggest problem for the students is they've been introduced to the cure-the-disease-at-all-costs concept, and they have difficulty switching gears,” he says.

As he sits down during the team meeting in the hospice, it's evident his presence puts everyone at ease. Laid back and friendly, he jokes with the staff. But as a nurse lists the names of patients who have died since last week, it's also evident that he's discouraged.

More than half the patients who were here last week are now dead.

“One thing you'll find out as students is the length of stay here is declining,” he tells Mrs. Barrow and Mr. Kim.

The problem is that patients and doctors resist hospice as an option until the last days or hours of life, he says. As a result, there's often no time to develop a relationship with the patient or family and little time to make adjustments in care to ease their suffering.

After the team meeting, it's time to visit patients. Dr. Huntoon, Mr. Kim, Mrs. Barrow, and two nurses stop by the rooms as Dr. Huntoon checks on patients.

In one room, a family member of a patient approaches Dr. Huntoon and asks the question he gets asked every day.

How much longer, doctor?

“My pat answer? In God's time. It's hard to say,” he responds.

He talks quietly with the family member before leaving the room. Should the other relatives come now? Should they call the funeral home and church?

Out in the hall, he tells Mrs. Barrow that the “when” question is “very common.”

“So, how long does she have?” Mrs. Barrow asks.

Dr. Huntoon just smiles. It could be hours. It could be days. It's hard to say, he says.

That's why it's important to be honest with patients, Dr. Huntoon says, but not make unrealistic predictions. About all he will offer about the case at hand: “It's close.”

In the next room, a patient's daughter approaches Dr. Huntoon. Again, he gets the question.

“I don't know. Less than a week,” he tells the daughter.

The woman's eyes begin to fill with tears.

“This is the first time it's bothered me. I would like to be able to talk to her one more time,” the daughter says.

Dr. Huntoon begins to leave, but stops, turns back to the woman, and gives her a hug.

Out in the hall afterward, he tells Mrs. Barrow:

“There are no hard and fast rules. But if you put patient comfort first, you'll usually end up on the right side of the fence.”

Student Danielle Barrow listens to registered nurse Diane Smith's comments about patients. Student Danielle Barrow listens to registered nurse Diane Smith's comments about patients.
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It's the last day in the hospice for Mrs. Barrow. In the last week, Bob and Cindy have died. Kay is still doing relatively well, but Mrs. Barrow now has two new patients.

On rounds today, Dr. Huntoon is in a cheerful mood and is decked out in the Christmas tie a couple of the nurses gave him as a gift.

Outside the first patient's room, the nurses tell Dr. Huntoon that this patient doesn't think he needs to be in hospice. In fact, the patient hasn't really grasped the fact that he has a terminal illness.

“His wife told him it's temporary, but she doesn't think it will be temporary,” a nurse tells Dr. Huntoon.

“Would you tell him it's not temporary?” he asks Mrs. Barrow

“I might wait a couple days,” the doctor interjects before Mrs. Barrow can respond. “I'll try to get his symptoms under control first and develop a relationship with the patient.”

He and Mrs. Barrow enter the patient's room.

After greeting the family and patient, Dr. Huntoon asks, “What would you rate your pain on a 1-to-10 scale?”

“Oh, 7,” the man responds.

“Well, we want to get that down to 3,” Dr. Huntoon tells the man. “I'd like to get that pain under control, and then we'll see where we can go from there.”

The man seems satisfied with that response. Outside in the hall, Dr. Huntoon tells the nurse to add steroids to the man's drug regimen to boost his appetite.

Mrs. Barrow seems a little confused about the need to increase appetite. “Remember, I'm trying to increase his quality of life,” Dr. Huntoon reminds.

A few doors down, Dr. Huntoon and Mrs. Barrow come to a room where death is close. The female patient already has developed what hospice workers call the “death rattle,” labored breathing that has a raspy sound to it. It's not painful, but it signals the end.

After the exam, the woman's daughter approaches Dr. Huntoon, and he speaks with her.

“I think we can make her death comfortable, but you need to know it's imminent,” he tells her.

“You guys are great,” the daughter says haltingly. “Thank you.”

“We're certainly trying to do everything we can,” he replies.

Dr. Huntoon stops for a minute, as if he senses something else.

“Are there any unresolved issues?”

The daughter hesitates before responding affirmatively.

“Have you talked about that as a family?” Dr. Huntoon inquires.

The daughter says no and adds that she doesn't think it would do much good, because her mother can't respond to her voice anymore.

“Try to talk some of those things out if you can.”

“But do you think she'll understand?” the daughter wonders.

“I don't know, but it can't hurt to try,” he tells her.

After a couple of more patients, Dr. Huntoon announces that they're done for the day; in fact, they're done with their rotation. He thanks Mr. Kim and Mrs. Barrow, shakes their hands, and walks away.

After two weeks of “switching gears,” it's time for Mrs. Barrow to return to her regular rotations. The rest of her time in medical school will be concentrated on curing the living, not comforting the dying.

But Mrs. Barrow says the lessons learned in hospice will stick with her forever.

“This gave me a sense of duty and made me realize that I have to make choices more clear for patients,” she says.

Watching Dr. Huntoon, she says, left her with the impression that listening is just as important as educating.

“He taught me how to talk to and approach patients, where you're not doing the talking, but the patient is. He doesn't say, `He looks pretty bad.' He'll ask, `Where do you think you're at?'”

While it was hard talking to families about death, she says it helped watching and listening to Dr. Huntoon.

She notes that Dr. Huntoon admitted on more than a few occasions that he'd had to wipe away tears as he consoled family members.

He didn't apologize for it. Because it's OK to cry.



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