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Gaps in End-of-Life Care
Linda L. Emanuel, MD, PhD;
Charles F. von Gunten, MD, PhD;
Frank D. Ferris, MD
Arch Fam Med. 2000;9:1176-1180.
ABSTRACT
Every year, more than 1 million Americans die of different causes. Some die easily and comfortably. Others die with a great deal of suffering and distress. This article contrasts key aspects of the way Americans die with the way they say they would like to die. It will also highlight some of the barriers to providing high-quality end-of-life care.
HOW AMERICANS DIED IN THE PAST
In the early 1900s, average life expectancy was 50 years. Childhood mortality was high. Those who became adults could expect to live well into their 60s. However, only a few people lived to the ages that we regard as normal today.1
Historically, up until the development of antibiotics in the mid-20th century, people typically died quickly, often of infectious diseases or unintentional injuries. As only a few remedies were available to extend life, medical therapies focused on caring and comfort. Although customs and traditions varied across cultures, most people cared for their sick at home with support from their physician, if one was available.
MEDICINE'S SHIFT IN FOCUS
During the second half of the 20th century, the age of science, technology, and communication shifted the values and focus of North American society on many levels. Many authorities have suggested that we have become a "death-denying" society, valuing productivity, youth, and independence and devaluing age, family, and interdependent caring for one another.1
At the same time, new science and technology have offered the potential of medical therapies previously unknown. Where once physicians could only provide comfort in the face of serious illness, the modern health care system can now fight aggressively against illness and death. We frequently attempt to prolong life at all cost. We sometimes succeed.
Improved sanitation, concerted efforts in public health, the development of a range of antibiotics and other medical interventions, and other factors together increased life expectancy to an average of 76 years by 1995 (79 years for women compared with 73 years for men), and the statistics continue to improve. A plethora of new medications and therapies have changed the way we experience illness. The shift in focus has been so complete that many organizations have held out promises that illness can be beaten. Many physicians and health care workers have come to believe that they have failed if they do not save their patients from death.
END OF LIFE IN AMERICA TODAY
Death has not been conquered; all of us will die. Although our extraordinary health care system and biomedical science enterprise has learned to cure a few illnesses, it has primarily learned to prolong the experience of living with chronic illness and the process of dying.
A few (<10%) of us will die suddenly of a myocardial infarction, an unintentional injury, or another unexpected event (Figure 1). Most (>90%) of us will experience a protracted life-threatening illness with either a relatively predictable steady course and a relatively short "terminal" phase, eg, cancer (Figure 2), or a slow decline punctuated by periodic crises, eg, congestive heart failure, emphysema, and Alzheimer-type dementia (Figure 3).
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Figure 1. Sudden death from an unexpected cause.
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Figure 2. Advanced life-threatening illness with a steady decline and a short terminal phase.
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Figure 3. Advanced life-threatening illness marked by a slow decline with periodic crises and sudden death.
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SYMPTOMS AND SUFFERING
As we imagine our own future and death, or the death of one of our children, fears and fantasies driven by past experiences and media dramatization frequently heighten anxiety about the events that may occur. Patients and families worry that symptoms will not be managed and that they will lose function and control. They wonder who will provide care, how they will pay for it, what dying will be like, and what comes afterward.
In fact, several studies indicate that most patients and families who are living with a life-threatening illness can expect to experience multiple physical symptoms and psychological, social, spiritual, and practical issues, many of which will be concurrent. Most of these problems add to a patient's and family's sense of suffering and reduce their quality of life, particularly if they are present for a long time.
In one study of patients with cancer, inpatients averaged 12.5 symptoms, while outpatients averaged 9.7 symptoms.2 In patients with acquired immunodeficiency syndrome, symptom prevalence has been reported as being even higher. Although some of these symptoms are related to the primary illness, some are adverse effects of medications or therapy, and others result from intercurrent illness. Many of the symptoms we see today were previously unknown or not considered because patients died relatively quickly.
In all studies of symptom prevalence, pain, nausea/vomiting, constipation, and breathlessness are significant. As patients lose weight and become weak and fatigued, loss of function becomes increasingly present. For many people, the loss of their independence is devastating and a source of considerable suffering.
In addition to physical symptoms, many patients and families also experience considerable psychological distress, including anxiety, depression, worry, fear, sadness, hopelessness, and other emotions. In one study, 40% of patients with advanced illness where death was expected were afraid of being a burden to their family and friends.1
SOCIAL ISOLATION
Today, in contrast to our past, many Americans live alone or with only one other adult. Often both need to work or, if they are older, at least one of them may be frail or ill. Other family members—brothers, sisters, children, and parents—often live far away and have "lives of their own." Friends have their own obligations and priorities. Although many Americans live in urban areas, there is considerable social isolation in this society that is built on independence and self-reliance.
Although 90% of Americans believe it is a family's responsibility to provide care for someone who is dying, this social isolation creates a different situation from the one that existed in the past. Today, when a patient needs assistance, the burden of caregiving frequently falls to a small number of people, often women, who may be unskilled and without the resources they need to provide that care.
FINANCIAL PRESSURES
In addition to the issue of who will provide care, financial issues associated with caregiving have a significant impact on the family. In one study, 20% of family members had to quit work or make another major life change to provide care for a loved one.1 Even when they had medical insurance, a significant number of patients and families suffered financial devastation. In one analysis, 31% of families lost most of their savings caring for their loved one.1 In another study of cancer patients, 40% of families became impoverished providing care.3 For some families, the financial implications may prohibit any thought of caring for a loved one at home.
COPING STRATEGIES
Particularly in the face of prolonged suffering and unmanaged symptoms, strategies for coping with illness, disability, loss of control, and lack of ability to do things that are meaningful are varied. In some patients, distress may be so significant that, if suffering is not relieved, their actions may become destructive as they plan suicide or seek physician-assisted suicide or euthanasia.
PLACE OF DEATH
In contrast to the desire to die at home expressed by 90% of the respondents to a Gallup survey commissioned by the National Hospice Organization in 1996,4 death has moved out of the home and into institutions. Dying is shielded from the family's and community's sight, usually occurring behind hospital doors. By 1949, 50% of deaths in America occurred in institutions. As of 1958, this had increased to 61%. Since 1980, it has remained at around 74% (in 1992, 57% of Americans died in hospitals, 17% died in nursing homes, and only 20% died in their own homes).1 Given the strongly expressed desire to die at home, the pattern of death in the United States is paradoxical. Although there is some regional variation, most patients dying in hospitals and nursing homes are dying with illnesses where the expected outcome is death. They could be managed at home.
As care for patients with life-threatening illnesses has shifted into institutions, a generalized lack of familiarity with the dying process and death has evolved. Only a few people, including physicians, have ever watched someone die. Most nonprofessionals have never seen a dead body, except perhaps at a funeral home. Fantasy about what death is really like is fueled by media dramatization, rarely by reality.
ROLE OF HOSPICE AND PALLIATIVE CARE
To help families care for patients with advanced life-threatening illness at home, hospice agencies started to appear across the United States during the late 1970s. Although volunteers and philanthropy initially ran them, hospices received a boost in 1982 when the federal government began reimbursing hospice care for Medicare beneficiaries with a prognosis of fewer than 6 months to live. Subsequent decades have seen a marked growth in the number of agencies operating in the United States. However, even with this growth, hospices still care for only a small percentage of dying patients: 11% of all deaths in the United States in 1993 and 17% in 1995. Of those patients dying of cancer in the United States, only about 40% are ever referred to a hospice agency (Steve Connor, PhD, oral communication, 1999). There is significant regional variation, however. For example, 35% of all dying patients in Florida die with hospice care. The figure is 40% in Oregon. The situation is similar for adult and pediatric patients.
Although the numbers of patients who die while being cared for by a hospice have been rising slowly, patients generally do not spend enough time in these programs to experience all the potential benefits. In 1995, although the median length of stay was 36 days, nearly one fifth of patients died within a week of admission. By 1998, the situation was worse. For several reasons, the median length of stay had dropped to fewer than 20 days.5
More recently, palliative care programs and consultation services have been developing across the United States to provide the expertise and standards of practice developed by hospices to patients who have needs for symptom control and supportive care earlier in their illness. Designed to improve the quality of patients' lives while they fight their disease, good palliative care may help to increase life expectancy in certain patients, according to anecdotal experience.
GAPS
When the current status of care for the dying is summarized, the large gap between the way Americans live with life-threatening illness and die and the way they would like to experience the end of their lives at home becomes apparent. With the shift to fight death, "the enemy," at all cost, treatments have frequently become excessively aggressive, symptoms have not been controlled, and patients have lost their independence. With the shift to care for seriously ill patients at home, many families have not coped, and death far too frequently has occurred in institutions. Although generalizations may be misleading for individual patients and families, they help to illustrate the general culture of dying in the United States and how far it is from the one that is desired by most Americans.
PUBLIC EXPECTATIONS OF PHYSICIANS
Despite their concerns and the general consensus that end-of-life care must improve, the public still maintains an optimistic attitude toward end-of-life care and the role of their physician. In 1997, an American Medical Association public opinion survey6 asked, "Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?" The results showed that most Americans (74%) expect their physician to be confident and competent to provide them with care when they develop a life-threatening illness.
PHYSICIAN TRAINING
However, until recently, formal education in end-of-life care has been absent from medical school and residency training. Most physicians can identify with an early career experience by one of us (C.F.vonG.) of feeling ill-equipped, if not fearful, to care for the dying: "They said there was ‘nothing to do' for this young man who was ‘end stage.' He was restless and short of breath; he couldn't talk and looked terrified. I didn't know what to do, so I patted him on the shoulder, said something inane, and left. At 7 AM, he died. The memory haunts me. I failed to care for him properly because I was ignorant."7(pp1-17)
When surveyed by the American Medical Association in 1997-1998, only 4 of 126 US medical schools required a separate course in the care of the dying. Although 121 schools reported that they covered the topic as part of a required course, the statistic may be misleading. Although it is not clear what is meant by "covered"—a lecture, a seminar, or required reading—it is clear that there is still no standardization of education in end-of-life care in medical schools at any level of training. Without adequate training, how can physicians become confident and competent in end-of-life care?
BARRIERS TO END-OF-LIFE CARE
There are many other reasons why end-of-life care in the United States is not what it could or should be.8 To name but a few:
- Frequently, neither the public nor health care providers acknowledge that end-of-life care is important. It is often introduced too late to be effective, and funding is frequently inadequate to deliver quality palliative care.
- Fears of addiction, exaggerated risks of adverse effects, and restrictive legislation have resulted in inadequate control of symptoms.
- Discomfort with communicating bad news and prognoses, lack of skill in assisting patients and families to negotiate clear goals of care and treatment priorities, and lack of understanding of patients' rights (or parents' rights if the patient is a child) to decline or withdraw treatment have led to frequent misunderstanding and excessive futile intervention.
- Personal fears, fantasies, worries, and lack of confidence have prompted many physicians to avoid dealing with patients who are dying.
GOALS OF THE PROJECT TO EDUCATE PHYSICIANS ON END-OF-LIFE CARE
As one contribution to help bridge the gap between patient and family expectations and the current state of end-of-life care in America, a growing team of professionals conceived and are implementing the Education for Physicians on End-of-Life Care (EPEC) Project.9 This project is intended to help physicians take care of their portion of the responsibility to develop good end-of-life care. Education for Physicians on End-of-Life Care will equip them with a core base of knowledge that, in its application, will help physicians to improve their competence and confidence, strengthen physician-patient relationships, and enhance personal satisfaction with end-of-life care.
The EPEC Project covers the range of decision-making situations, approaches to managing the most frequently occurring symptoms, and the basic concepts of interdisciplinary supportive care that any physician in general practice will face in end-of-life care. It is not an attempt to make every physician an expert in palliative care.
Our hope is that EPEC will impel physicians to rediscover some of the core values of our profession and foster creative approaches to advocate for and create change in the myriad situations and places in which physicians serve dying Americans.
Although physicians cannot change everything, change will not be effective without them. Physicians have a special responsibility and leadership opportunity in end-of-life care.
SUMMARY
The end of a person's life can be one of the most important times in that life. Although the way we die changed considerably during the 20th century, neither our society nor modern medicine has valued end-of-life care (Table 1). Physicians are not sufficiently trained to be competent or confident in it. The EPEC curriculum proposes to equip physicians with knowledge, skills, and attitudes that can be tailored to their unique practice settings. The ultimate goal is to relieve suffering and improve the quality of the lives of all Americans who are living with, or dying of, life-threatening illnesses.
AUTHOR INFORMATION
Accepted for publication September 11, 2000.
We thank the Education for Physicians on End-of-Life Care (EPEC) Team, Interdisciplinary Program in Professionalism and Human Rights, Northwestern University Medical School, Chicago, Ill; the EPEC Advisory Group; other contributors to the EPEC curriculum; the faculty and participants of EPEC training conferences; and EPEC's founding partner, The Institute for Ethics, American Medical Association, Chicago.
Reprints: Linda L. Emanuel, MD, PhD, Northwestern University Medical School, 750 N Lake Shore Dr, Suite 601, Chicago, IL 60611 (e-mail: info{at}epec.net).
From the Education for Physicians on End-of-Life Care (EPEC) Project, Interdisciplinary Program in Professionalism and Human Rights, Northwestern University Medical School, Chicago, Ill.
REFERENCES
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1. Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997:14-49.
2. Portenoy RK, Thaler HT, Kornblith AB, et al. Symptom prevalence, characteristics and distress in a cancer population. Qual Life Res. 1994;3:183-189.
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3. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients' families. JAMA. 1994;272:1839-1844.
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4. The Gallup Organization. Knowledge and Attitudes Related to Hospice Care [National Hospice Organization survey]. Princeton, NJ: Gallup Organization; September 1996.
5. Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med. 1996;335:172-178.
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6. American Medical Association. Public Opinion on Health Care Issues: 1997. Chicago, Ill: American Medical Association; August 1997.
7. Emanuel LL, ed, von Gunten CF, ed, Ferris FD, ed. The Education for Physicians on End-of-Life Care (EPEC) curriculum. Available at: http://www.EPEC.net. Accessed October 16, 2000.
8. Foley KM. Competent care for the dying instead of physician-assisted suicide. N Engl J Med. 1997;336:54-58.
9. EPEC Project Web Site. Available at: http://www.epec.net. Accessed October 16, 2000.
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