Innovations in End-of-Life Care
2003; Wolters Kluwer; Volume: 25; Issue: 24 Linguagem: Inglês
10.1097/01.cot.0000291090.28466.e3
ISSN1548-4688
Autores Tópico(s)Ethics in medical practice
ResumoIn a study published in 1995 in the Journal of the American Medical Association 9,000 dying people, 1,600 physicians, and 500 nurses were interviewed about how patients were treated in the hospital, how medical decisions were made, and what happened to them and their families during treatment and after death. The results were sad: ▪ Half the patients who were still conscious before they died had moderate to severe pain at least half the time. ▪ More than half the physicians interviewed did not know of their patients' preferences for end-of-life care. ▪ Nearly 40% of the patients spent at least 10 days in an intensive care unit prior to death. Things have not changed much in the intervening years. What's more, says Judith Paice, RN, PhD, Director of the Cancer Pain Program at Northwestern University, 50% of all cancer patients die in hospitals and half of those die in an ICU. Compare that with the 40% to 50% of patients who go home from the Thomas Palliative Care Unit at the Massey Cancer Center of Virginia Commonwealth University. “One of the things we do is give people a quick tune-up for pain and other symptoms and send them home to live reasonably normal lives for months—even cancer patients,” said Thomas Smith, MD, Chairman of Hematology, Oncology, and Palliative Care there and a member of the National Cancer Advisory Board. A number of choices need to be made when death seems inevitable: where it should take place, at home or in an institution; the amount of care a family can provide; and the decision to draw up advance directives about the manner of death—a living will and/or durable power of attorney for health care for someone empowered to make medical decisions for the patient. These decisions will have a profound effect on the way a person dies: how comfortable or painful the process will be; how the patient and physician will relate to one another; how the patient and family will interact; and the medical treatment provided, or withheld. Palliative Care vs Hospice The best final months for most people are found in palliative care. According to the American Association of Community Cancer Centers, more than 17% of community hospitals and 26% of university hospitals have palliative care programs, which reduce length of stay and save hundreds of thousands of dollars for the institution and family. Timothy E. Quill, MD, Director of the Palliative Care Program at the University of Rochester (NY) Medical Center, said the difference between palliative and end-of-life (hospice) care is misunderstood. “You don't have to set limits on aggressive curative care while providing palliative care,” he said. Dr. Paice agreed. “Palliative care is the management of symptoms—physical, emotional, spiritual—for people with life-threatening illness. Patients may be dying, although not necessarily, and not all of them have cancer. Hospice care is provided to people who have less than six months to live and who have chosen to eschew curative therapy.”Figure: Judith Paice, RN, PhD: “Patients are no more comfortable talking about what will happen at the end of life than doctors are, but it's up to the doctor to initiate the discussion, and it's best to do it right from the beginning. All parties should be clear about what will be done. Then, as death approaches, the patient and physician should go over things again just to be sure that the patient hasn't changed his or her mind about something.”Unfortunately, palliative care is often offered too late and thus does not provide needed comfort and pain relief. In a 2000 article in JAMA, Dr. Quill noted that there are two major reasons for this. First, physicians are reluctant or unable to tell patients that they may die soon, and when they do talk about prognosis, they tend to be overly optimistic. Second, physicians fear that they will be perceived as “giving up” if they talk about the end of life. In an interview for this article, he advocated open discussion about end-of-life care. The problem is when to have it: “Not very early in the treatment process, because the patient is still in shock and there may be hope of recovery—and not so late that the patient is near death.” The best time to do it is when the patient brings it up, Dr. Quill said. The goal of the discussion is to achieve consensus with patient, family, and physician. “Basically what I tell them is to hope for the best but prepare for the worst. Routine discussions about end-of-life issues are good for all seriously ill patients, even those with a reasonable chance of stabilization or recovery.” Values & Rights There's enough legal precedent now and enough agreement in the bioethics community to say that patients have the right to be autonomous about the way they wish to die. They—and only they—should make decisions about end-of-life care. But often it doesn't work out that way, especially when patients die on an acute care unit. Decisions about dying are never completely intellectual. They also are driven by the patient's—and the family's—personal and religious values, by what they understand about the dying process, by the extent to which they want to make choices, by caregivers' values, and by the state laws that govern dying. Dr. Paice said that it shouldn't matter if the patient and physician are the same religion or subscribe to a similar value system. “It usually doesn't, but sometimes at the end of life, there are misunderstandings about what can and should be done.” Betty Ferrell, PhD, RN, a research scientist at the City of Hope National Medical Center, added that the significant thing is not that nurses and physicians share patients' religion or values but that they understand and do what patients want. Dr. Smith disagrees, saying that if a patient's values or wishes are significantly at odds with the oncologist, especially when death is imminent, the latter should transfer the patient to another physician.Figure: Thomas Smith, MD, asks patients how much they want to know, explaining that most people want a lot of detail. But on the rare occasions when a patient prefers ignorance, he asks the family. “Virginia and most other states have a standard hierarchy of people legally empowered to make medical decisions for people: adult spouse, then adult children, etc.”Dr. Paice remarked that physicians—oncologists especially—tend to have very poor communication skills, although it goes both ways: “Patients are no more comfortable talking about what will happen at the end of life than doctors are,” she said, “but it's up to the doctor to initiate the discussion, and it's best to do it right from the beginning. All parties should be clear about what will be done. Then, as death approaches, the patient and physician should go over things again just to be sure that the patient hasn't changed his or her mind about something.” Again Dr. Smith's view was different: “Ideally, I suppose you should have these discussions, but patients change their minds during the course of an illness, and a lot of them have unrealistic expectations. Half of all patients die without ever having had a DNR discussion.” He added that he doesn't think it is a good idea to talk about end-of-life care with “for instance, a woman who's come to you for adjuvant breast cancer treatment.” But when all treatment has failed, he asks patients what they think will happen at the end of life and then tries to educate them. He does, however, believe that people need adequate time to prepare for death. When Patients Don't Want to Know Patrick Coyne, RN, is Clinical Director of the Thomas Palliative Care Unit at Massey Cancer Center. When asked what happens when a patient doesn't want to know what is happening with the disease or is unable to grasp the facts and their meaning, he said, “We bring the information down to their level where they can understand it. “And if we can't do that, we work with the family. If the patient has a durable power of attorney, we use that to make decisions if the patient won't.” Dr. Smith asks patients how much they want to know. “Most people want a lot of detail,” he said. But on the rare occasions when a patient prefers ignorance, he asks the family.Figure: Timothy Quill, MD: “Routine discussions about end-of-life issues are good for all seriously ill patients, even those with a reasonable chance of stabilization or recovery.”“Virginia and most other states have a standard hierarchy of people legally empowered to make medical decisions for people: adult spouse, then adult children, etc.” Dr. Paice talked about the concept of “informed refusal,” when a patient consciously makes a choice to leave decisions to family members, which is more common among non-white patients, she said—for example, American Indians and Muslims. “Some people want to know everything and decide everything, and some don't,” Dr. Paice said. “Whatever the case, we do what the patient wants.” Dr. Quill added: “If there's any denial going on, make sure it isn't yours.” Physicians are obligated to discuss these difficult things with patients, he explained, as long as the patient wants to talk. And if the patient doesn't? “If you've made certain that the decision not to talk is the patient's, then don't,” Dr. Quill said. Take-Home Message Dr. Ferrell, who has worked with cancer patients for almost 27 years, said she had two take-home messages for OT's readers. ▪ First, education. “People can't practice what they don't know,” she said. “Although we've made significant progress, until all professionals are educated about pain relief and palliative care, we won't be doing our jobs.” There is a huge need for professional education, she said. “I don't know of a single medical school curriculum or oncology fellowship program that includes this kind of training. We just have to teach oncologists.” ▪ Second, research. “Cancer treatment has improved dramatically over the past two decades because of research. Palliative care could profit from the same.” She noted that only 1% of the total NCI research budget is devoted to palliative care, and she spends a good deal of time and energy trying to increase that percentage. “We will advance the care of patients only when we advance research.” Dr. Quill also summarized end-of-life care: “There are many dimensions to suffering besides pain. It's a very personal thing, and all of us who take care of dying people need to become students of suffering.” Fast Track Status for Xcytrin, Telcyta, and MLN2704 The FDA recently granted Fast Track status to three drugs: Xcytrin, Telcyta, and MLN2704. Xcytrin (motexafin gadolinium injection), made by Pharmacyclics, received the designation for treatment of brain metastases in patients with non-small-cell lung cancer (NSCLC). The decision was made based on the results of previous clinical trials with the drug in combination with whole-brain radiation therapy that suggested a clinical benefit for lung cancer patients with brain metastases and a potential for treatment of brain metastases in NSCLC patients, as well as information from the company's ongoing trial called SMART (Study of Neurologic Progression with Motexafin Gadolinium And Radiation Therapy), a randomized controlled pivotal Phase III study to compare the effects of whole-brain irradiation alone with or without Xcytrin in lung cancer patients with brain metastases. Telcyta (TLK286), made by Telik, received the Fast-Track designation for third-line therapy for locally advanced or metastatic NSCLC. The FDA had previously granted the drug that status for third-line therapy in patients with platinum refractory or resistant ovarian cancer. MLN2704, made by Millennium Pharmaceuticals, is currently being evaluated in a Phase I/II clinical trial at Memorial Sloan-Kettering Cancer Center and New York-Presbyterian Hospital/Weill Cornell Medical Center for the treatment of patients with metastatic androgen-independent prostate cancer. MLN2704 is composed of a deimmunized monoclonal antibody (MLN591) directed at prostate-specific membrane antigen (PSMA) conjugated to the chemotherapeutic agent DM1. Unlike the enzyme PSA that circulates in the blood, PSMA is a protein expressed on the cell surface of virtually all prostate cancer cells and its abundance on the cell surface increases as the disease progresses and becomes refractory to hormonal therapy. Money, Insurance, & Access to Care Everyone should be able to choose their end-of-life care. But in reality, these options belong only to those who can afford them: people with sufficient health insurance coverage or the ability to pay for care themselves. The rest get what the health care system is able or willing to provide—and often it is insufficient and of poor quality. By the same token, access to life-extending care, even that which is futile, is available only to those who have the financial resources to pay for it, the knowledge that it is available, and the emotional strength to demand it. Again, the rest get what others deem appropriate. “One third of surviving families are bankrupt by terminal illness, even those with decent health insurance,” said Thomas Smith, MD. This is true in even greater measure for the poor—unless the hospital can provide a “safety network” as Patrick Coyne, RN, describes the philosophy at Virginia Commonwealth University. “About a third of our patients are indigent and they come from all over the Commonwealth,” he said. “But the social workers are good at filling out the paperwork to get people on Medicare and Medicaid, and if they're not eligible for those, they find other resources.” “In many cases, family services protects patients who have no insurance,” said Judith Paice, RN, PhD. “They do everything they can to get the best palliative care, and often they succeed. A lot depends on the primary physician—how much he or she is willing to help get the patient into the unit.” She added that if the patient is on Medicare or Medicaid, it's a “slam dunk” for being admitted to the unit at Northwestern. On the palliative care unit at Virginia Commonwealth University Massey Cancer Center, most of the fiscal problems arise from dealing with insurance companies. “You would think that insured patients would have no trouble paying for anything, but it's an uphill battle all the way. Insurers don't know what palliative care is, they're not making any effort to learn about it, and if by some chance they do get it, they don't see its value,” Mr. Coyne said. “And they sure don't want to reimburse for it.” “One third of surviving families are bankrupt by terminal illness, even those with decent health insurance.” He gave an example: A patient with breast cancer went home for a visit and while there, she tripped and fell down the stairs, breaking both legs and several ribs. The insurance company refused to pay for the needed acute care because she was a palliative care patient. “Eventually we got it straightened out, but it took me 40 hours on the phone to do it,” he related. Mr. Coyne acknowledged that insurance fights are somewhat less frequent and acrimonious now, but they still exist. He also said that having to engage in these fights makes him angry and frustrated because he could be devoting this time to patient care. “But we're trailblazing for other hospitals that are setting up palliative care units, so I guess it's worth it.” Dr. Smith said that a recent case control study there showed that the palliative care unit cut the cost of dying by 66% compared with other units in the hospital. “We can transfer people from high-tech, high-cost care to low-tech, low-cost care,” he explained. “We do it by standardizing everything. For example, for pain control, in other units, a nurse has to contact a physician for each and every different dose of medication, thus taking time and delaying relief for the patient. “In the palliative care unit, we have protocols, and nurses are given a lot of leeway in making judgments about dosage and administration of pain medication.” —Margot J. Fromer Examples of Excellence Patrick Coyne, RN, is Clinical Director of the Thomas Palliative Care Unit at Massey Cancer Center, which with 11 beds is one of the largest in the country. “We focus on quality of life here,” he said, “and we [nurses and physicians] believe that crucial choices and decisions should be discussed soon after diagnosis: how the patient wants to conduct the remainder of his or life and how he or she wants to die.” The team approach is key, and good communication is essential, Mr. Coyne added. “We have lots of meetings with patients, relatives, oncologists, and other medical specialists. We're always asking what we can do to make things better for patients, and we try to set realistic goals with them.” It's also important to know and understand the patient's values, he added. “You need great nurses who are dedicated to providing sensitive and intelligent care, and we think palliative care is the way to do it.” At the time of this interview, there was an American Indian patient on the unit who wanted to see a medicine man, and with the nurses' encouragement the family arranged a visit. Mr. Coyne's reaction: “It's cool. We all learned a lot.”Figure: Patrick Coyne, RN: “We focus on quality of life here, and believe that crucial choices and decisions should be discussed soon after diagnosis: how the patient wants to conduct the remainder of his or life and how he or she wants to die.”Figure: Betty R. Ferrell, PhD, RN, noted that at City of Hope emphasis is on simultaneous care: using whatever treatment has a chance of extending survival while at the same time providing palliative care. “End-of-life care should not be an either-or situation,” she said.Betty R. Ferrell, PhD, RN, of City of Hope, said that a major goal of palliative care is to keep patients alert and aware while they're dying so they can interact with family and friends and live the way they want until they die. “We're able to achieve that goal most of the time,” she said. “Most of our patients are with it until a few hours or days before death.” When asked about the most problematic issues at the end of life, Dr. Ferrell didn't hesitate: “Talking to patients,” she said. “This is very, very difficult, and it's exceedingly complex.” She explained that even though patients and families say they understand the limits of cancer treatment, many of them don't. “Sometimes, when the cancer has metastasized and there's absolutely no hope of recovery, they—or more likely, their families—want to try one more drug, one more treatment. They have almost infinite faith that the medical system can do something. They think resuscitation will give them another chance, whereas in reality, it almost never works. A lot of people are kind of blindsided by what they see on ER and other medical TV shows.” At City of Hope, emphasis is on simultaneous care: using whatever treatment has a chance of extending survival while at the same time providing palliative care. “End-of-life care should not be an either-or situation,” said Dr. Ferrell. —Margot J. Fromer
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