Statesman Journal from Salem, Oregon • 7

Statesman Journal, Salem, Sunday, March 19, 1935 A MATTER OF DYIHG Emotions sway decisions rtti i tlOICGS VfticGS i a i-r k. i. MM I i 1 l-J M.I, CAFE it. i 'm Physician assistant at if 4 si i Continued from Page 1 A In several studies, the match between what a patient would want and what a trusted family member would choose for them was no greater than what could be determined by a coin toss. Family most often erred on the side of providing unwanted treatments.

That shouldn't be surprising, because family members have to make the treatment decisions under the worst possible circumstances. Doctors say families are so distraught that they need help with such simple decisions as whether to stand up or sit down. Doctors can't help them by providing solid facts. They are unable to say, Tour loved one will die in 20 minutes if you choose this option," or, "Just do this, and he will survive." Medical information comes in percentages. Loved ones have to make life and death decisions on the basis of probabilities, likelihoods, odds.

Even when a patient can dictate and sign a living will and repeat a request for aid in dying, there's still a chance that withdrawal is not the patient's true wish. Doctors worry that patients make that decision during a fleeting depression or because greedy children or bill collectors are pressuring them and that they feel a duty to die. Opponents of doctor-assisted suicide worry about that. Even relying on a doctor often isn't advisable. In some respects, doctors are the least likely people to cope with the complicated emotions surrounding death.

The profession attracts them because they hope to control death. Their training supports that illusion. Even those most willing and able to help families through their difficult choices admit they sometimes are haunted by doubts. Dr. Don Girard, who teaches at medical school, lost four patients in December and had to participate in difficult choices with each.

"It becomes a micro-dissection of what you did," he said. "Did I judge this right or judge that right? It's a fine line between constructive introspection and destructive introspection. You could really get down." Consistent values Sometimes families cope better than the doctors do. Barbara Glidewell, a patient advocate at Oregon Health Sciences University, has seen doctors so upset about a choice that families are moved to comfort them with, "Doctor, you did everything you could." The only way to tell if a decision is right is to view it in the context of the patient's life and see if it is consistent with lifelong values. Doctors found a clear case with Ernest Hood.

Hood grew up in Portland during the big-band era. As a teen-ager, he picked up a guitar and began laying down rhythms for a band that worked dance halls and hotel ballrooms. The band was successful enough to be booked on a world tour. But one day after rehearsal, Hood fell down and never got up. It was the beginning of polio, which put him in an iron lung for a year and in a wheelchair and leg braces for the rest of his life.

But those were only a small part of the ways the experience changed him. He became a sharp observer of the world. He delighted in sharing the details that other people missed. And he loved the radio. In 1960, Hood helped start Portland's first jazz club, The Way Out, under the Hawthorne Bridge.

Its nightly concerts were broadcast live on KWJJ, which played jazz at that time. A decade later, he joined the community radio movement and helped start KBOO. Hood's own show, Radio Days, aired on KBOO and KOAP. It consisted of aural postcards, where he described scenes from his travels through Oregon, being careful to capture the sound of the place and enlivening it with recordings from the 1920s, '30s and '40s. For many elderly and disabled people, isolated in their homes, the program was a line to the world.

Condition deteriorates But when Hood reached his 60s, he developed Post-polio Syndrome, which progressively weakened the muscles in his body, gradually affecting his arms and his lungs. His breathing grew labored, and then one day it ceased. He was rushed to the hospital, where the doctors inserted a respirator tube down his throat. One day when daughter Laurel came to visit, the doctors removed the tube for a while, and Hood was amused at what it had done to his vocal chords. It reminded him of a Mickey Rooney movie, and he said "Gee, I guess 111 have to shave." It was the last time Laurel heard him speak.

The doctors cut a hole in his throat, a tracheostomy. The procedure kept him alive but robbed him of his ability to talk. Photo by J.L Clark ABOVE: Ernest Hood helped start Portland's first jazz club; a decade later he joined the community radio movement His radio program was an open line to the world for many elderly and disabled people. LEFT: The land where Laurel Hood tends her vines is were her father last had a chance to run freely before being stricken with polio when he was still a Administrator for Professional Services Oregon Nurses Association My very best friend died of leukemia when we were seniors in high school, so my experiences started before my career as a nurse. My friend had a very aggressive form of leukemia, and in 1 966 the cure or the treatment wasn't available.

She was the oldest child in her family and her parents were devastated, and they attempted to save her using very aggressive treatments that were available at the time, which were very minimal transfusions, some medications. I saw her about two days before her death. She was hemorrhaging and in agony and would like I believe, although we couldn't talk about it strong pain medications, or even to be helped to die. It made me wonder, should that happen to me, would I want my parents to do what her parents did? That was really the beginning of my having to think about "what would happen if?" In nursing school, when I was in my pediatric rotation, my first three patients died. Two of them had a disease called cystic fibrosis and again the treatment wasn't as good as it is now.

I was confronted with tiny children with terminal illnesses, whose parents were doing every thing they could to save them. The children were very uncomfortable, very unhappy. They had to have medication that tasted horrible and made them nauseated. They coughed all the time because their lungs filled with a sticky substance. They would have to go through what we call chest PT, in which we clap on their chest and they are sore.

They have difficulty breathing; they have no energy. It's a pretty miserable existence for a child who wants to play. It made me wonder what I would do if I was a parent of one of those children. When I graduated and began practice, I took care of adults and older adults. I saw them confronting terminal illnesses from cancer to heart disease to liver failure.

I saw the patients' desire not to stay alive, the families' desire to keep them alive and the real conflict that occurs when people's interests are not the same. I participated frequently with putting people on ventilators and keeping them "alive." A ventilator actually breathes for the patient. A tube is put down into the throat into the pipe that leads to the lungs, and the ventilator acts as a set of lungs. For patients who are awake it's very frightening. The pause in the ventilator is very alarming to patients, because they are wondering if it's going to give them their next breath.

Ventilators make an awful sound. I feel the way many, many nurses feel. If there's some cure or potential for improvement, I don't mind aggressive care. But if there's not going to be any improvement, I don't want to prolong the process of dying. I don't want to put my family through it.

I don't want to put myself through it selfishly. Kaiser Permanente I think about people who lingered a long time with a terminal or painful illness, who didn't deserve to suffer so long and so needlessly when there was no hope. It makes me aware that I would not want to experience the same sort of lingering, painful death. I remember a 19-year-old man, whom I knew 20 years ago, who had cancer of the colon, which is very unusual in young men. He was a biker.

He wore a motorcycle jacket and had a very tough sort of exterior. But I kind of suspected that, inside, he might be a pussycat or a teddy bear. When I approached him in his hospital room, I didn't know if anyone had ever talked to him about his dying. This was back in 1971, when we still didn't really didn't talk about those things with dying patients. His response, when I asked him if he had dealt with the possibility of dying, was to cry.

I couldn't imagine Freddy shedding any tears, but he did. And then he thanked me for asking, because this had troubled him greatly and his doctor hadn't spoken to him about it; his family hadn't mentioned it; his friends didn't talk about it. They would just come in and try to cheer him up and tell him jokes, and he really wanted to talk. He wanted to talk very, very much about this. I sat and listened to him for an hour.

If I were faced with dying, I would hope that people would be honest with me and be open enough to be able to talk about the end of life. I would hope that I would be as brave as my biker friend Freddy was: To be able to shed tears when I felt that way, and to be able to be honest with friends and family about my fears and about my feelings. I come from a family in which there's a very strong affirmation that we don't want others in charge of our lives, whether they be specific persons or they be society at large. I think a person has the right to not be resuscitated if they have a terminal illness. I think we should have the right to end our suffering.

I consider medicine to be a partnership between me and the patients that I help care for. Those people who have terminal illnesses want to have some control over their lives and I can understand that. I try to support them. I let them know what the options are. They make the decisions.

But I also give them my opinions. I might say, "Do you really think that this is the time that you should give up when there may be other things we can do to prolong your life and maybe give you some quality time? You know we haven't tried everything." Or I might just do the opposite and say, "You know that these medicines that you are taking are just making you sick and you are going to die soon no matter what we do. And, yet, you are suggesting we do one more Honesty is absolutely necessary. Timothy J. GonzalezStatesman Journal young man.

came into the room with the news that the officials had reconsidered and that the ethics committee would take up his request immediately. Hood mouthed the word, "Finally." Complete silence, calm In the absence of Hood's original doctor, whose name the family has kept to itself, doctors Susan Tolle and Miles Edwards joined the group at the bedside. Laurel held her father's hand, and he smiled up at her and mouthed the words, "You are a good one." Tolle's hands trembled, but she squeezed a near-fatal dose of morphine directly into his bloodstream, while Edwards pulled away the ventilator tube. Hood managed a shallow breath about once every three minutes, but the drug dose was sufficient and he did not struggle for air. He was as calm as his daughter dared wish.

"He had his eyes closed," Laurel said, "and he was slowing down and slowing down, but at the last minute he opened his eyes and looked right at me he was so far away because of the morphine and it was like he had the biggest question I've ever seen. "I think it was I'll never know what it was "I think he wanted to know if it was OK to leave us, and so I told him it was OK to go." Nobody moved and the room was utterly silent. Laurel realized she was holding her breath, they were all holding their breaths, while the doctors watched, and everyone waited for something more, and the stillness in the room grew, until a child broke through with a flat observation: "He's dead." His condition continued to worsen. He caught shingles. Fluid built up in his lungs and around his heart.

He was moved to an intensive care floor at Oregon Health Sciences University. When he first arrived at the hospital, he could write messages, but he soon grew too weak to hold a pencil. Instead, he spelled words, letter by letter, with an index finger on the opposing palm. So Hood, a man who cherished saying precisely what he meant, was reduced to mouthing words, which his family only could understand partially. The effort would bring tears to his eyes.

He didn't want to go on. Laurel told hospital officials that her father wanted them to remove the respirator and allow him to die. They responded that they were forming an ethics committee to hear just that kind of request, but it wouldn't be ready for six more months. Hood told his daughter that he wanted her to take him home so that he could disconnect the machine himself. She was scared for him, but she also was afraid for herself because she felt that as his daughter she would have to honor his request.

He called her to his bedside and indicated that he wanted her to write something down. He spelled letters into his palm and mouthed the syllables to an unfamiliar word, "A-B-S-O-L-U "I'm trying to work out these letters. N. Absolution. Does he want a priest or what? But what he wanted to do was absolve us of being guilty for anything.

Dying was his choice," she said. But before Hood's family acted, Barbara Glidewell, the hospitals's patient advocate, What do you think about doctor-assisted suicide? Oregon Health Decisions, a nonprofit group, put together these cases to help people test and clarify their attitudes toward the issue. For each of the three cases below, please mark the option that best fits your values. Then send us your responses. (ase (ase (ase A A 65-year-old machinist lives with his wife.

He previously had been healthy, strong and independent. Fourteen months ago, he was found to have a lung cancer that spread to his spine and liver. He initially responded well to chemotherapy and radiation but now has relapsed. At present, he is unable to walk or control his bowels or bladder and has severe pain. He asks his physician to help him die because there is no hope of treatment, and he will only experience loss of dignity.

A 1 9-year-old man developed bone cancer in his right leg one year ago. Despite amputation of his leg and intensive chemotherapy, his cancer has returned and spread throughout his body, causing severe pain. The anti-cancer drugs resulted in continuous vomiting and severe weight loss. Attempts to control pain with a variety of narcotics resulted in worsening of his vomiting. There is no reasonable hope for success from further treatment.

His parents are deeply religious and pray for a miracle. The man cries continuously for death and begs his physician to release him from his misery. An 81 -year-old woman has lived alone since her husband died five years ago. She has been very independent, and has been extremely active in her church, senior citizens center and the bowling league. In the past six months, she has had episodes of memory lapses and loss of balance.

After a medical evaluation, she was told that she might be showing signs of senility, or having small strokes. This is not a life-threatening condition. She is now unable to live alone, and is staying with her sister. She has been told that she soon will need to move into a nursing home for her own safety. She considers this a fate worse than death and has asked her doctor to help her in ending her life.

Call the experts Rarely are there simple answers when dealing with questions about the end of life. Legal issues sometimes clash with patients' wishes and their families' concerns. Where are the answers? Tuesday night, two counselors who help people sort through end-of-life questions will be at the Statesman Journal and will be available to answer your calls. Courtney Campbell, an ethicist at Oregon State University, will be available from 4 to 6 p.m. Barbara Glidewell, a patient advocate at Oregon Health Sciences University, will be available from 6 to 8 p.m.

They can be reached at 399-6651. I support a I support or withholding medical treatment in this case. I support or withholding medical I am unsure about assistance in this case. I am opposed to doctor-assisted suicide in this case. I am opposed to doctor-assisted suicide in this case.

I am unsure about assistance in this case. I support or withholding medical treatment In this case. I am I am I support a I support a unsure opposed doctor doctor about to doctor- assisting assisting assistance assisted this person this person in this suicide in to die to die by case. this case, through the directly writing of a adminis- prescription terlng the for a lethal lethal medication. medication.

I support a doctor assisting this person to die through the writing of a prescription for a lethal medication. I support a doctor assisting this person to die by directly the lethal medication. I support a doctor assisting this person to die by directly the lethal medication. treatment in doctor assisting this person to die through the writing of a prescription for a lethal medication. this case.

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