Measure 16: Oregon Confronts Death and Dying; 5; Comfort Care/Alternative Care

No one wants to die an agonizing death, some people facing that possibility try to avoid it by taking their own lives. But comfort care experts say they can treat pain better now than ever before, since the passage of Oregon's assisted suicide law. Pain management and comfort care have become greater concerns of medical professionals in the state and throughout the country. As part of OPB series on death and Dying, Colin Fogarty reports on what the medical community can and cannot do to help you have a peaceful death. [inaudible]. Dr. Marshall Bedder, pain management specialist at St. Vincent's Hospital in Portland, Bedder uses an ultrasound locator to pinpoint an irritated nerve root in the back of his patients head. The condition causes sharp, debilitating headaches. Once he finds the spot Bedder, injects a long acting local anesthetic that eliminates the pain with no side effects.

OK, I think you're all right there. You're not looking great. Pain management is a relatively new specialty, Bedder says. In the past, doctors assumed that the only way to cure chronic pain was through over sedation or in medical slang for a patient to be snowed. Hopefully what we're able to do these days is provide much better pain management so that the patient can, in fact, interact with their family, have some quality time and be as functional as they possibly can be. And that's a lot different than just sort of giving up and giving them the, you know, so much medication. Bedder says if more doctors were trained in how to treat pain, they could eliminate it without making patients feel dopey. Now, you may not want to fly airplanes or even semitrailers on the highway, but but absolutely they can function. And we have many patients who go back to work. Studies of cancer patients indicate most of them experience severe pain. The problem has given rise to groups around the country called State Cancer Pain

Initiatives. [sounds of conference attendees] At a recent conference in Portland, Members of the Pain Initiative movement from around the country met to discuss progress in promoting better treatment of cancer pain. The groups hope to increase the usage of pain fighting drugs called analgesics and opioids. Malcolm Murphy and Gene Snook, salesmen with the pharmaceutical company Purdue Frederick, are here with their drug MS-contin. It's a 12 hour sustained release, oral morphine preparation. In English. What does that mean? It's a strong, pure opioid that is is utilized for the management and prevention of cancer pain. Snook and Murphy say they're preaching to the converted at this conference, but the two spend most of their time trying to debunk myths about their drug. One myth is that morphine is dangerous. If a dying patient is given too much morphine, in some cases, the drug

can weaken the lungs so that death is hastened. Malcolm Murphy says that occurs less frequently than most people think. He says when dying patients are given a lot of morphine, it is often assumed that their inevitable death was hastened by the drugs, even if the morphine had nothing to do with it. Pain can, in fact hasten a patient's death because chronic pain can actually have an effect on the body's immune system so that, in fact, a patient that is in severe chronic pain over time could be more susceptible to opportunistic, opportunistic infections, etc. That could lead to an earlier demise. Inadequate treatment of pain is exactly what these conference participants hoped to end. Dr. Kathleen Foley has dedicated most of her professional career to that cause. She's the chief expert on pain at Memorial Sloan Kettering Cancer Center in New York. She's worked with universities and hospitals, as well as the World Health Organization in improving treatment of cancer pain.

Foley says the use of morphine and other narcotics has been clouded by anti-drug movements. So you're seeing an end product of a long history of debate, disagreement, myth and now reality. And the reality is, is that cancer pain can be treated, that analgesic drug therapies, the mainstay of treatment, that drugs like morphine are the drugs of choice for treating cancer patients and that patients have a right to freedom from cancer pain. In Foley's view, assisted suicide advocates take the easy road. It's much simpler, she says, for Oregonians to legalize assisted suicide, as they did in 1994, then to improve comfort care. What has happened is this argument, which is very much the tip of the iceberg, is starting at the wrong end of the issue. I think Oregon ought to say, how do we want to care for our dying? I think the state in it and as a community should really begin to address what is good for this community, what should be the rights of individual patients

for access to care. Since the passage of Oregon's assisted suicide law, hospitals around the state have heeded that advice and paid more attention to comfort care. And in the last legislative session, Oregon lawmakers loosened regulations of pain medication. Soon after last year's election. Oregon Health Sciences University in Portland began a comfort care team made up of doctors, nurses, social workers and a chaplain. I don't know the answer to this issue, and I don't think it should not. It's not. The interdisciplinary group meets to discuss options for patients searching for the best approach to a dying patient's care. My name is Cheryl Blackwell and I'm in the hospital with AIDS and a inflamed hip. The hospital's comfort care team has helped Cheryl Blackwell's doctor prescribe the right kind and the right amount of pain medication for her. It's a thriving pain and it's just in the groin area there

and it goes all around the side of the hip. And it does get at times very painful where I get into the fetal position and not even able to move. And until I get like some Demerol or or some kind of medicine in in me that will carry out and take that pain away, then, you know, I have to just wait with it. Dr. Paul Bascom heads the comfort care team. Bascom and the team's nursing specialist, Laurie Andreas, check on Blackwell. They've been having it better than anyone that. She now has a morphine drip, which she controls with the onset of even a hint of pain. Blackwell just hits a button and the pain goes away. But Bascom says her first night in the hospital was not so smooth. And the nurse kind of misread the order and the doctor talked with. They get every hour and the nurse out of every two hours and here she's been in pain for months and now she's in the hospital and things went out of control and

and she's fighting with a nurse over whether or not she can get she get pain medication. So we change that part on this thing that she controls herself. And within a day, you know, she could hit it as often as she needs and she can really control the pain. And the first minute she feels a little twinge of discomfort. She has the button and she gets a little additional bit of morphine and pain. Very well controlled. So she can get to I mean, can she get to the point where she feels no pain and yet is not, quote unquote snowed but she's there now. Right now, comfort care advocates argue that the problem is not the medical community's inability to provide comfort care, but an appalling lack of knowledge about how to do it. Studies show that a significant number of doctors are unable to accurately gauge their patients pain level, and they often under prescribed medication, leaving their patients unnecessarily suffering. Please welcome Dr. Bascom. [applause] At a recent symposium in Portland, Dr. Bascom explained that medical students don't learn enough about comfort care,.

And they looked at a more recent textbook on heart failure. How do you treat heart failure? And there was nothing written about what do you do when all your treatments have resolved? How do you make the patient feel better? So there's a real dearth of formal literature about that though there is starting to be some things in the in the journals. Through this symposium on the legal and practical issues surrounding end of life care. OHSU wanted to take the lead in helping physicians around the state face death and dying issues. Dr. Susan Tolle, the university's top ethicist, hopes to change the doctors role with people in the last stage of life. Sometimes we tell people bad news like we can't cure your cancer and sometimes we do it in a way that people feel abandoned. Kind of a message. There's nothing more I can do for you. And you feel alone, abandoned, helpless, when, of course, there's no truth in that statement. There are lots more things I can do for you in comfort. I can be with you. There may be some things we can do to extend your life a while.

Tolle says that instead of treating every symptom and ailment of a dying patient without regard to the context of the patient's life, doctors should concentrate on the wisdom of care. How do we get the human side, the compassion side, to be as strong and as skillful as the technical side? To explore the issue, symposium participants take part in a role play. On stage is an older woman with her husband there talking with a doctor in this scene. Jane has advanced colon cancer. She's filled out an advanced medical directive and has a hospice nurse. But on this visit, Jane has asked her doctor, played by internist Dr. Wendy Levinson, for a prescription to end her life. I think it's my life and not your life. And I don't think you've ever gone through what I've been going through and still am going through. So how can you make those decisions for me? Can you say more about what you're going through, what you're experiencing now?

Oh, I understand lots of people being me and the pain, of course, you know the nature as bad as the days. And doctors and nurses in the audience suggest a range of approaches to change request. Most say that Dr. Levinson should facilitate more conversation to find out why Jane is making the request. So let me understand. I mean it. Let me see if I have this right. You feel out of control. Yes. You are tired of the pain. Oh, yes. And you're also worried about the finances of your care and you're taking away from your family's future. As Dr. Levinson asks more questions, Jane presses the issue. And I don't mean to be insulting to you doctors, but this business of comfort care that hospice gives, I suspect it's more comfort for the doctor for you than it is for the patient. I see this is a problem for doctors more than for patients.

So it sounds like you're feeling angry at me that maybe I've really not met your needs and and I'm really sorry if I haven't fully met your needs. And I really would like to understand what you need now so I can try to. All right. Well, I know it's new. And doctors thinking that patients could even think about doing away with themselves. And I know suicide is wrong in some places, but to me, this is a dignified way to end a good life when there's no hope for tomorrow. Finally, someone in the audience comments. I don't think she's going to listen to you until she gets an answer about her request for assisted suicide. You know, I'm thinking that asking for the prescription is a statement of her desperation, what she's afraid of or what she's experiencing and feeling abandoned from, and my hope was I would try to understand what she was really fearing and be able to talk about that. Most comfort care advocates agree with the notion that when dying patients request

assisted suicide, they don't really want to kill themselves. They're just desperate for better care. For the most part, that care can be provided. But pain management experts concede they can't do it all. Dr. Charles Cleeland is president of the American Pain Society and a pain researcher at the University of Wisconsin Medical School. Cleeland admits the medical community's failure to adequately addressed what many call existential pain. I think we can do something about pain. I think trying to handle something that more broadly might be called suffering is much, much more difficult. And my focus has been to try to deal with those elements of the patient's distress, very narrowly pain, but more broadly fatigue, lack of sleep, simple depression that we actually can deal with. And I certainly know and everyone knows that there's a lot more to suffering than that. But at least at this point in time, we don't have a practical way of

dealing with it. Doctors can't cure death and they can't make it easy. So many patients turn to other sources to ease their suffering like their families, hospice or alternative forms of medicine, like acupuncture. You know, I told you that my balance was a little off. Yeah. Tim Schuck, visits the immune enhancement program in Southeast Portland twice a week on this appointment, he's being treated by his usual acupuncturist, Alan Downs. The two have developed an easy rapport over the two years Schuck has been coming here. This acupuncture and massage service for people with AIDS is modeled after a similar program in San Francisco. So I put the needle in slowly. I inserted quickly. But then once it's in through the skin, I move it down into the. Schuck has been feeling an intense numbness in his upper thigh, which he's also being treated for pain, and one of his ribs and some dizziness he's had lately downs, places, needles at points in Schuck's body that are said to help those symptoms

and to improve his immune system. You would think having needles put in here is very painful and not Schuck says he's learned not to expect too much from acupuncture. He knows that the treatment simply makes him more comfortable as he slowly dies of AIDS. I assume that there are people who come here, that they're coming here, you know, to have somebody save their life. And I don't think that's what it's all about. You know, I think it's the journey is just made easier by acupuncture and massage. I think once I work through that, you know, my expectations changed a lot. Tim Schuck jokes that if love could cure AIDS, the immune enhancement project could eliminate the disease from the Portland area. Allen Downs says he can't cure AIDS, but it can help his client's digestion, treat some pain and anxiety and improve their overall quality of life.

This is a real safe place to come, and you might feel that it's a special place, it's quiet, and people can just use this as a time, a time out where they can just sort of meditate and relax and have a place where people listen to their their problems. We can't always do things about a lot of the stuff they complain about, but we listen and people say that's pretty special in and of itself. Tim Schuck says he's receiving adequate comfort care. His pain is under control. And he has friends, family, doctors and acupuncturists who take care of him. But Shuk has left open the possibility of assisted suicide. In fact, he's been actively involved in the legal battle over Measure 16. For him, it's not a question of adequate care. It's a question of control over his life and his death. Oregon's assisted suicide law may have been a desperate plea from the public for better care of the dying, if the passage of Measure 16 accomplishes nothing else, it has given momentum to efforts in the health care profession

to improve methods of helping people die. Peaceful deaths. For OPB, I'm Colin Fogarty. In the past 50 years, medicine has advanced farther and faster than in any other period in human history. Doctors now can perform astounding feats to prolong life. A generation ago, heart problems, cancer and other life threatening illnesses killed us off much faster. Heart transplants and pacemakers, radiation and chemotherapy are just some of the procedures and treatments that prolong our lives now. The result is that while in 1940, Americans were expected to live sixty two point nine years by last year, the average could count on living to age 76. Medical technology has slowed to death, bringing many Americans to die in hospitals hooked up to machines. But dying that way is expensive and can be hard on patients and their families. In the final part of OPV series on death and dying, Colin Fogarty prepared this report

on another option for the end of life hospice. Gail Jacobson sits in a well furnished room, closely monitoring her father's condition, 83 year old Larry Jacobson suffers from multiple myeloma, a form of bone cancer that slowly produces tumors throughout the body. At the moment, he's you know, he's holding his own. He sleeps more and more every day and he doesn't seem to eat very much, which is typical of that of the disease. Jacobson's room is like a hospital room with an electric bed, an adjustable rolling cart and medical supplies cluttered about but notably absent are the sterile smell, tile floors and stark decor of most hospitals. Larry Jacobson is a patient at Hopewell House in Portland, one of the few residential hospice homes in the country run by Ecumenical Ministries of Oregon.

Nurses here care for as many as 15 patients at a time. Visitors and casually dressed staff speak in hushed tones, but the sunlit hallways are cheery. Children and dogs are welcome, and most patients eat meals together in a common area like Larry Jacobson, everyone who comes to Hopewell house comes to die. Jacobson ran a Texaco station at John's Landing in Portland for 40 years. Gail Jacobson says her father's frail, emaciated body bears little resemblance to the man she remembers. There are times when we lift him ourselves and it's it gets easier to do because his weight diminishes. But he still has a lot of strength in his hand. And he was always somebody who could lift enormous weight. I mean, if the car didn't fit onto the hydraulic lift, he he would lift it from the fender. That always impressed me.

As is typical with multiple myeloma, Larry Jacobsen's cancer went in and out of remission as he received chemotherapy and radiation. The treatment bought him as many as three years to spend with his family and three grown children. But finally, eight months ago, the disease caught up with him. At that point in the progression of the cancer, the side effects of radiation would have outweighed any benefits. And so the Jacobsen's turned to hospice first in their home. Then there was an opening at Hopewell house. Jacobson's voice was almost destroyed either by tumors or radiation. Do you know why you're here? You know why you're at Hopewell House? Sure, sure, he said, I'm trying to recover from an illness that I know I'll never recover from and I know a memory kind of. The light is so poor in here, why do you want to move ahead on this day,

the view outside Larry Jacobson's window is bright. With a welcome break in the cloudy autumn skies, Amanda Jacobson shaves her husband of 56 years, getting him ready for a ride outside in his wheelchair. Here is the story of the Larry. OK, here we go. Lean forward. All right. A trip outdoors, however, is not an easy proposition. Jacobson is so weak, his family and a nurse must help with every detail to get him out of bed. It's a good job. Straighten up your hips. Thank you. As he pushes his father's wheelchair, Mark Jacobson says the decision to bring his dad here was difficult one. When we brought him up here, it was the first time that they had slept apart in 56, 56 years.

So it was kind of, you know, it was really tough on my mom, but it would have been impossible to continue caring for him at home. The stress of nursing her husband around the clock was too much for Amanda Jacobson, who was 79. The family worried Larry Jacobson might fall and his bones were especially brittle. Hopewell House has several nurses who can attend to him, feed him, make him comfortable and make sure there are no problems. Nurses can use a crane to move him if necessary. They also closely monitor the pain he's feeling and provide a steady supply of morphine skin patches. As Larry Jacobson got sicker, he spoke less and never mentioned his own impending death. I think he knows, but I haven't met anybody who can crack into that. And if he is so reluctant to part with that information, I think it's I don't see it as my job to try to. Well, we hate to upset him, you know, and

try to keep him as comfortable and as happy as possible. And I can say more hopeful his. As much as we want to keep hold, while the Jacobsen's we're lucky to have hope house, most dying Americans don't have a hospice facility nearby. The vast majority of hospice care is delivered at home, where most people want to spend their final days. Ann Jackson, head of the Oregon Hospice Association, says rather than being a place, hospice is a philosophy. When comfort care is a desirable outcome, when curative care is no longer likely, or that somebody just doesn't want to go through continuous treatments, they're ready to call it a day. We think that we're about quality of life.

Home hospice care provides a number of services from doctors, nurses, clergy, counselors and volunteers. It's a full court press, in a sense, to manage pain, explain what to expect as a terminal illness progresses and generally help out the patient and the family. Sometimes that's as basic as picking up a prescription or just giving a family member a break. ?Donna Howell?, director of the hospice program at Sacred Heart Hospital in Eugene, says hospice fills a void left by medical professionals. Most Americans and we're the only culture that really is that fearful of the word death and probably Canadians to have are really uncomfortable with it because everything is focused on saving your life. Everything look at the heart surgeries that we're doing and everything, and you can do it. You can save people's life. But the one thing that we've forgotten is quality of life. This year, as many as 400000 dying people will receive hospice care. That's up 50000 from last year.

Ann Jackson says the number of people getting into hospice programs increases about 13 percent a year. She attributes that to two factors. The idea of hospice is catching on among medical professionals, although many doctors continue to lack familiarity with the approach. The second factor, Jackson says, is the aging American population. And the next 20 years, the health care system will be stressed as baby boomers grow old. Hospice, Jackson says, is cost effective. Dying people receiving hospice in the home are less likely to go to the emergency room, she says, or get expensive treatment. That's not curative. Most of the Medicare dollars are spent in the final six months of life, but they're usually spent in intensive care frequently for futile treatments, putting someone who is dying of pancreatic cancer on life support system, for instance, hospice patients sign documents in advance, saying they want no measures taken to extend life.

Instead, hospice focuses on the quality of a patient's final days. Hopewell House nursing director Lisa Hallberg says that view not only includes comfort care but respect for dying people. She says hospice neither hinders nor hastens death. We view death as a part of life, and that's very comforting to people because some because up to this point, a lot of people have been in and out of hospitals, in and out of surgery, done a lot of chemo and a lot of radiation. That is exhausting and very hard on a person emotionally, financially, socially, with their family, with their friends. As a hospice nurse with several years experience caring for dying people, Hallberg says. You can't force someone to accept death. She's seen patients who are depressed or angry or refusing to believe they're going to die.

We let them be there because you can't force the grieving process. Each person is so different because their history and their processing and all of that is going into where held it, how quickly they can accept where they're at. That philosophy causes many hospice nurses to oppose legalizing doctor assisted suicide. If you hasten dying, they believe you miss out on something important. The natural process of dying may look like to us is suffering when actually it's the body just shutting down slowly piece by piece. And that person probably isn't even cognizant of the fact that that those things are happening. They've withdrawn so far inside themselves that they don't notice. So. So who's suffering? I think we are. The pets of volunteers often roam through Hopewell House's sunlit halls.

Before he became completely bedridden. Larry Jacobsen liked to pet them, but his condition continued to erode. Gail Jacobson says the tumor in her father's mouth grew rapidly in his final days. It filled his mouth. And although he says it doesn't hurt him, he nage on it until it erupts and he gets a mouthful of blood out. And it's very terrifying to those of us who are around him. For a while, Larry Jacobson seemed more agitated and uncomfortable, but toward the end, he began to show signs of what hospice nurses call going active, a phase common in a person's final hours. Jacobsen's pulse slowed. He moved in and out of consciousness and hallucinated. But he seemed to have a sense of peace. He smiled every so often, as is custom at Hopewell House. The nurses who have cared for Larry Jacobson for two and a half months all came

to his room to say goodbye. They worried about his daughter and his wife for his entire stay. They had remained at Hopewell house for as many as 12 hours a day. Well, I'm exhausted. I'm always tired and I'm always hungry. If I have a choice, I will rest before I'll eat. I can't seem to do one and then the other. And we just keep putting off the things we have to do until it's over. Gail Jacobson says she tried to talk to her father, read to him, play him tapes, but he's not interested in anything anymore. It's very short term concentration span and had a difficult time understanding what I'm trying to tell him. Not only is he suffering a lot and feeling a lot of discomfort. But we are suffering so much in looking at this disintegration before our very eyes. Despite Larry Jacobsen's long period of suffering, suicide was never

an option for him or his family. Neither was hospice. The perfect answer for the Jacobsen's morphine patches were no match for the many tumors caused by multiple myeloma. And nurses could do nothing to stop the swelling of the tumor and Jacobson's mouth. Choosing hospice did not make dying easy for Larry Jacobson and his family. It simply made it easier. For OPB, I'm Colin Fogarty. Larry Jacobson died early Tuesday morning at Hopewell House in Portland.