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Perspectives |
1 From the Department of Radiological Sciences, University of California, Irvine Medical Center, Orange. Received March 12, 2003; accepted March 14. Address correspondence to the author, 18961 Castlegate Ln, Santa Ana, CA 92705 (e-mail: rmfriede@uci.edu)
Index terms: Perspectives • Radiology and radiologists, socioeconomic issues
Physicians quickly learn that the practice of medicine is as much an art as it is a science. Science teaches how to diagnose and treat disease, but the art of medicine is manifested in the ability to treat the patient. The human genome does not define any individual. Each of us is unique, defined by our personality, our background, and the sum of our desires and fears. At no time is the art of medicine more important than when the patient realizes that the end of life is near. At this time, the physician must be able to relate to the patient’s fears and treat the individual as well as the disease. We do not give up on life willingly. Among many individuals approaching the end of life, there is a widespread and deeply held desire not to be dead. Many patients, even when aware of the poor odds, will willingly accept burdensome and painful treatment in return for a small chance to postpone death. In the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) among individuals who were seriously ill with fatal diseases, 20%–40% preferred care focused on extending life, even if it meant having more pain and discomfort (1). It is curious that individuals in good health may believe that euthanasia and physician-assisted suicide would be preferable to severe pain from a fatal disease, but when these same individuals actually experience such pain, they desire futile treatment rather than euthanasia or physician-assisted suicide.
Death is an inevitable consequence of life. When the physician realizes that cure and survival are no longer possible, he must make the transition from fighting death to the preservation of comfort and dignity. Patients realize the difficulty in predicting prognoses. In one study, 70% of patients identified as terminal, which in hospice terms means expected to die within 6 months, were still alive at the end of 6 months, and 58% of patients who actually died within that interval had been excluded from hospice because of a more favorable prognosis (1). Of those patients whose likelihood of surviving 6 months was estimated at 10% or less, 41% actually survived 6 months (1). Although there is a certain amount of guesswork in prognosis, physicians have to be realistic with their patients so that the patients can reorder their lives. The physician should encourage patients to create an advanced directive, and patients should designate a surrogate to make decisions if they are not capable of doing so.
In 1990, Congress adopted the Patient Self-Determination Act, which sought to increase the use of advanced directives (2). In a 1999 study, Gordon and Shade found that only one-third of patients aged 65 or older reported filing an advance directive (3). Only 15% of those patients stated that they had been asked whether they desired advance directives. In a retrospective study in the Midwest, Rosenfeld et al found that 85% of individuals had advanced directives when an extensive educational program on end-of-life planning had been implemented (4). This suggests that we are not educating the public about advance directives. Patients and physicians dislike discussing how they wish to approach end-of-life decisions, but such discussions are necessary. Physicians should discuss cardiopulmonary resuscitation and "do not resuscitate" orders with patients, and patients should realize that such procedures are usually not successful. Overall, the survival of a hospitalized patient to the time of discharge after receiving cardiopulmonary resuscitation is approximately 14%; it is lower in patients with metastatic carcinoma or organ failure and somewhat higher in those with myocardial infarction (5).
Ethical and legal issues associated with end of life include futility, withholding or withdrawing care, and the concept of double effect. When a physician believes that a treatment is unlikely to achieve the goal of care, it is considered futile. This concept is difficult to implement when patients or family cannot be convinced. According to the Supreme Court, withholding and withdrawing life-sustaining interventions are legally equivalent (5). To withhold this information from patients on the basis of their right to refuse treatment is unethical. A physician may propose alternatives, recommend against a course of action, or refuse to participate in a course of action, but he or she cannot leave a patient uninformed. The concept of double effect states that sedation of patients with the primary goal of relief of pain, and the secondary effect of the hastening of death, is acceptable as long as the primary use of sedation is to relieve suffering and not to shorten life (5). The need to increase sedation must be documented in response to specific symptoms. Pain is the most common end-stage symptom for hospitalized patients, and it has been stated that 40% of patients have moderate to severe pain in the last few days of life (5).
When a physician believes that the patient has a prognosis of 6 months or less, the patient should be encouraged to enroll in hospice. Hospice is not just a physical location, since the service can be provided to patients in their homes. Only about 20% of all hospitalized patients who die in the United States received hospice care in 2000 (6). The admission criteria of a prognosis of less than 6 months may have inhibited referral. Unfortunately, patients usually enroll late, and of the 20% of patients who enroll in hospice, the median survival is about 3 weeks (5). When a person realizes that the end of life is near, there are certain tasks that he or she would like to complete in order to die with dignity and peace. It has been suggested that the following five statements help to close relationships: Forgive me, I forgive you, thank you, I love you, and goodbye (5).
There is no one good definition of a good death. Important considerations at the end of life were ranked in the following order by a focus panel of 75 physicians, nurses, social workers, and patients (7): freedom from pain, being at peace with God, presence of family, mental awareness, treatment choices followed, finances in order, a feeling that life had been meaningful, resolving of conflicts, and last, dying at home. Steinhauser et al formed focus groups of such persons as physicians, nurses, patients, social workers, and chaplains for discussions on what constitutes a good death (8). They identified similar themes, which included pain and symptom management, involvement of patients in treatment decisions, information on the course of their illness so that patients could plan, resolving conflicts and spending time with family and friends, and affirmation of the whole person—the patients want to be treated as a person, not as a disease, and they want their interactions with the physician to be that of a person, rather than a doctor, at the end. A major obstacle to end-of-life care is the refusal to recognize that curative treatments are futile.
Race, education, language spoken, and income are all associated with a patient’s decision on whether or not to execute an advanced directive. African American and Hispanic patients are more likely to want treatment to the bitter end, while white patients are more likely to indicate a preference to forego such treatment (9). Of the various groups surveyed, a higher percentage of African Americans (than Hispanic or white patients) wanted all available treatments and had a preference for life-sustaining treatments because of the distrust of a predominately white medical culture. The level of education was found to be the most important factor that differentiated patients who did and those who did not execute an advanced directive (9). Of those patients without a directive, most thought their family would decide what to do; some patients were afraid that curative treatments would be withheld and wanted everything possible done. In the SUPPORT study, among those patients who were seriously ill with metastatic colon or lung cancer, 20%–40% wanted to extend their life, even if it meant having more pain and discomfort (1). Many patients were willing to accept intensive chemotherapy with a small chance of benefits or complete resection of the stomach for carcinoma that usually has a survival rate of less than 10%, rather than accept death. Part of their decision was, again, the deeply held desire not to be dead, supported by the feeling that physicians cannot accurately predict who will die and who will not.
In Western medicine, competent persons have the right to make treatment decisions based on their own values, beliefs, and life goals. The number one fear of Americans is to die in excruciating pain. Control of pain is possible in 95% of patients, although in some cases, sedation may hasten death (10). The Supreme Court has affirmed the physician’s obligation to provide adequate pain management, even if the secondary effect is death. The patient or his surrogate must accept the risk. To withhold or withdraw life-sustaining treatment is legally justified by precepts of informed consent and informed refusal (10). Tilden noted that death was often negotiated "following a long period of aggressive treatments burdensome to patients, exhausting and expensive to the family, demoralizing to clinicians, and difficult to justify for society’s resources" (11). The comprehensive 4-year SUPPORT study of end-of-life care for over 9,000 terminally ill patients showed that many aggressive treatment plans merely prolong dying and do not contribute to a good death (10).
How much of our Gross National Product are we willing to spend for medical care? Obviously, there is a finite amount of money available, and the more spent for health care, the less available for other services. Medical expertise and technology are not in short supply, but they are expensive, and to control costs, some sort of medical rationing is necessary. Patients with good insurance can usually get all the medical attention they or their doctors desire, but those with poor insurance, estimated at 49% of the population, will be affected significantly by rationing (12). Data on the evaluation of U.S. Medicare payments, published in 1993, showed that payments made to individuals during the last year of life are 27%–30% of the total payments expended by Medicare, and this percentage has not varied substantially since 1976 (13). Forty percent of these expenditures were incurred within a month of death. In 1984, Lubitz and Prihoda showed that in 1978, 28% of Medicare expenditures were attributable to the approximately 6% of beneficiaries who died in that year (14). Many other investigators, including, more recently, Hogan et al (in 2001), indicated similar results, with the total Medicare costs for end-of-life care remaining stable at approximately 25% over the past 2 decades (15).
Hogan et al reported that Medicare covered more than 60% of the total health care of all decedents in the calendar year of the time of death between 1992 and 1996. However, Bontin and Huskamp believe that Medicare is not really oriented toward end-of-life care (16). Psychosocial support services and outpatient prescription drugs are covered in the hospice program but not in regular Medicare. Long-term custodial care is not covered. Home health care is covered only for patients whose care will allow them to gain function. The diagnostic-related groups program has created an incentive to provide less care, while physicians who are paid per visit have an incentive to provide more care. In effect, Medicare is oriented toward curative care and neglects palliative end-of-life care. Costs incurred by end-of-life care obviously decrease expenditures available for other types of health care. In their review, Rand investigators estimated that only half of our population receives recommended preventive care, 70% receive recommended acute care, and 60% receive recommended chronic care (17). They also estimated that about 30% of acute care and 20% of chronic care were contraindicated, wasting finances and perhaps endangering patients. In an Institute of Medicine study, investigators estimated that between 44,000 and 98,000 deaths were due to medical errors in treatment each year (18). This is not a trivial problem. The plethora of new and conflicting information and the rapidity of changing circumstances in medicine requires a degree of sophistication, which many physicians do not have. In addition, the threat of malpractice leads to excessive therapy.
Although it has been stated that hospice care provides substantial cost savings, studies of hospice care have been inconclusive, with some reports suggesting a savings of about 10% (16). Patients who receive hospice care are more likely to be those who do not want aggressive therapy, so when comparing costs, there is a patient selection bias that may lead to hospice patients showing lower costs. End-of-life care is not a high priority for hospitals, since they are not reimbursed for providing palliative care. We need new standards for end-of-life care, including palliative care, nursing home care, and other types of specific reimbursements. Pronovost and Angos (20) state that end-of-life care is estimated to consume 10%–12% of all health care expenditures, as well as about 27% of Medicare expenditures (14,19). The elderly population will grow considerably in the next 20 years, raising concerns over the anticipated cost to Medicare of providing care to the elderly. Although cost is certainly important, we do not want to give the public the impression that cost, rather than the quality of life, has become the most important concern. There have been some reports regarding the cost of providing additional quality-adjusted life years to critically ill patients in the SUPPORT study. Dialysis was associated with a cost-effectiveness ratio of $128,200 per quality-adjusted life year, while cardiopulmonary resuscitation was estimated to be $225,892 per quality-adjusted life year (20). Conventionally, treatments are considered cost-effective when there is a ratio of less than $100,000 per quality-adjusted life year per life saved. Despite this, there is little attempt today to restrict cardiopulmonary resuscitation or dialysis in the United States.
Groocock has an interesting argument regarding rationing of care (21). His major point is that younger people under the age of 65 are the productive people who contribute to the economy, and he feels it makes no sense to have these people become ill for long periods of time and wait on queues to be cured. He feels that the rationing of medical care should be for pensioners who are not really contributing to the economy. He believes this is not unfair because pensioners and nonpensioners are the same people, just at different ages. All individuals will then go through the same cycle. With pensioners, priority should be given to treatments that improve the quality of life, those that just extend life briefly should be omitted.
Butler states that in the eyes of the U.K. government, there is no such thing as rationing in health care (22). The government insists that it is providing a comprehensive range of services from the cradle to the grave. However, there is rationing by delay, rationing by denial, rationing by dilution, and rationing by not offering the service. This raises many social and ethical questions. Should we select patients who are socially and economically valued by society in preference to those who are unemployed? Should we use quality-adjusted life years to rank different treatments according to the number of years of additional life that can be expected? This would be an attempt to get value for the money spent. For example, smoking clinics and hypertension screening clinics probably offer better value than do those that provide treatment by means of coronary bypass and transplant surgery, which in turn offer better value than does neurosurgery for malignant brain tumors. Putting this into effect would be measuring people’s capacity to benefit from care and contribute to society by deciding who receives treatment, rather than just their need for care. This again is an ethical issue of discrimination that arises from rationing.
This type of planned rationing would mean that the true cost of treating one patient is the benefit that might have been enjoyed if these same resources had been used to treat other patients (23). For example, the cost of keeping one patient on hospital hemodialysis for a year may be to forego 10 coronary artery bypass grafts. This then becomes the agonizing reality between clinical freedom and social responsibility. Clinical freedom may be defined as the right of doctors to do whatever, in their opinion, is best for their patients. The financial limits, however, which are inevitable in our economy, limit clinical freedom (23). One must make sure that no activity is pursued unless the benefits gained outweigh the benefits foregone. Where would more people be helped? Perhaps hip replacements are a better buy than are heart transplants in terms of the quality-adjusted life years gained.
Bottom line, the expected gain in quality-adjusted life years must justify the cost. Health economics is not the end of clinical freedom but rather a demand for greater accountability of resource use. By saying this, we are redefining the responsibility of physicians toward patients who can live but cannot recover. We are stating that for patients with poor quality of life with predictable short life spans and for patients who cannot be cured, treatment is rarely appropriate. In our society, the final decision rests with patients and family, but as costs mount, this may change in the future (23).
The intersection of ethics and economics in end-of-life care is inevitable. Although there is widespread opposition to rationing on the categorical basis of patient age, extensive defacto health care rationing by providers does occur on the basis of age (24). There are few if any quantitative data that show whether cost considerations really lead to inappropriate end-of-life care. A national right to life committee, which objects to the concept of advanced directives, now provides individuals with wills to execute in which they state that they specifically desire what may be futile interventions to preserve life (24).
Vladeck, in 1999, pointed out that "health care professionals tend to do what health care professionals do, and large health care institutions tend to do what large institutions do," regardless of the controversy about ethics and economics and despite rules and regulations (25). Incentives or disincentives or prohibitions affect such behaviors at the margin but rarely change what professionals do in a fundamental way. Unless specific laws are enacted, health care professionals will probably continue to treat the way their conscience and training directs.
There are many reasons why aggressive treatments are used at the end of life. Some of these include (a) implementation of available technology, (b) the consideration of death as a failure by many physicians, (c) hope for medical miracles by patients and family, (d) anxieties about adverse legal repercussions that affect physicians’ actions, and (e) patient prejudices, which make them believe that they might not be treated sufficiently and influence them against advanced directives. In end-of-life decisions, doctors are often not only treating disease, the patient, and the patient’s family, but they are also treating according to their conscience and, in effect, treating themselves.
In the past 100 years, we have witnessed an unprecedented 30-year increase in life expectancy. Much of this is due to increasing interest in and practices of public health, which have always been directed toward preventing illness, injury, and premature death. With the increase in the 85 years and older population, end of life has become a dominant public health issue that must be addressed. It has become a public health priority because of three characteristics: a large disease burden, major impact on health costs, and potential for prevention (25).
End-of-life care is a social, economic, and political problem (26). As our population ages, the problem increases. Currently, end-of-life care is determined by the patient’s desires and possibly mitigated by the physician’s advice, but there are no regulations governing what care is to be given. End-of-life care currently consumes 10%–12% of total health care costs, with almost half of this amount expended in the last month or two of life. Obviously, we do not want to compromise care that leads to improved quality of life, but we must direct our attention to the futile care of the last month of life. This is where considerable savings are available without compromising residual quality of life. We must define the responsibilities of physicians toward these patients who can live but not recover (27). We must establish guidelines that control expenditures at this point, when death is inevitable—guidelines that will hopefully minimize errors and not compromise those who can still retain quality of life. It is not an easy task, and it will be distasteful to physicians and politicians, but it must be attempted.
REFERENCES
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