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November 15, 2000

Learning to Care for People With Chronic Illness Facing the End of Life

Author Affiliations

Author Affiliation: Center to Improve Care of the Dying, RAND, Arlington, Va.

JAMA. 2000;284(19):2508-2511. doi:10.1001/jama.284.19.2508

Until the last few generations, most people died quickly, following an infection or an injury, or soon after the initial symptoms of an advanced and untreatable condition like cancer, diabetes, or heart disease. After higher mortality in infancy, deaths were arrayed evenly across the life span. In developed countries, the scourges of a century ago have long been tamed. Modern living conditions and health care have ensured that most will die slowly, and mostly in old age. Seventy-eight percent of people in the United States live past their 65th birthday, and more than three quarters of them will contend with cancer, stroke, heart disease, obstructive lung disease, or dementia during their last year of life.1

The end of life, which once was the province of sudden fate, has come to be shaped by deliberate choices and by services provided to the chronically ill by each person's community.2,3 Constructed to respond to the health threats of the last century, the medical care system focuses on rescuing patients from acute ill health and, with somewhat less commitment, preventing illness. While these remain essential, society and the health care system also must adapt to new demographics, which will be dominated by persons with incurable, progressive, eventually fatal, and disabling illnesses.4

This issue of THE JOURNAL includes some of the best of recent research and insights about care at the end of life and, thereby, recognizes the importance and growth of this new field of learning. Several characteristics should mark this new endeavor. Research, education, quality improvement, and advocacy concerning the end of life arise largely from the shared discomfort with current shortcomings in care and the growing vision of better ways to serve those who are very sick. Thus, this field demands reform and reformers. The clinical work is humbling, meaningful, community based, and collaborative by nature. Perhaps this field will evolve with uniquely collaborative approaches across professions and programs and also with more attention to community resources and culture, public health methods and frameworks, and spiritual and familial relationships. Deep understanding and rapid change are urgently needed. Today, unnecessary suffering is a strong motivation for rapid improvement; however, within the next 25 years,5 most societies will face substantial increases in the annual number of people coming to the end of their lives.

Much has already improved. Just 30 years ago, virtually every hospitalized patient underwent an effort at resuscitation at the time of death6; that would be shocking now. Many elderly cancer patients now use hospice care,1 a comprehensive mode of end-of-life care that became widely available and covered by Medicare only within the last 20 years.7 The Robert Wood Johnson Foundation8 and the National Institutes of Health9 have sponsored major initiatives on end-of-life care and symptom research. For example, the Project on Death in America of the Open Society Institute has supported 68 faculty scholars who have substantial roles in building the intellectual and academic base for understanding and reform.10

Yet much need for better care remains.4 When people tell the story of a comfortable and dignified close of life for a family member, they routinely note some element, such as a hospice nurse or a trusted friend, that they were "lucky" to have—a stark recognition that people understand that they risk not having adequate care at the end of life.

End-of-life care, sometimes called palliative care (even though the definition is still in flux), is rapidly developing worldwide. The International Association for Hospice and Palliative Care helps developing countries engender service delivery programs that adapt to local cultural, ethnic, spiritual, and economic realities.11 Vigorous and sustained research marks recent work in the United Kingdom, as documented and provided by the UK National Council on Hospice and Specialist Palliative Care Services.12 Health Canada and the Canadian Palliative Care Association are conducting a nationwide consensus-building project to define standards of practice.13 The European Association for Palliative Care, a nongovernmental organization recognized by the Council of Europe, coordinates research, education, and networking across Europe.14 International information exchange is now routine through the Internet, often using resource referral sites15 and communication devices (such as the Inter-Institutional Collaborating Network on End-of-life Care16). The World Health Organization has made freedom from cancer pain a global mission and has supported many countries and regions in starting initiatives.17

The articles in this issue of THE JOURNAL demonstrate the yield of this newly developing field. Steinhauser et al18 report the attributes of a good end of life that are important to patients, family, and caregivers, showing substantial variation in personal preferences. Emanuel et al19 report that most seriously ill patients and their caregivers would support legalizing euthanasia and physician-assisted suicide, but very few actually consider implementing either for their own situation. Silveira et al20 found that patients in Oregon, where physician-assisted suicide has been legal since 1997, generally misunderstand their options for forgoing treatment or accelerating death. Wolfe et al21 and Rebagliato et al22 traced some influences of parental and physician preferences and understanding on the course of care taken for sick infants and children. The studies reported here required newly developed measurement instruments, thousands of patients and family members, and hundreds of clinicians. This line of research will gradually build substantial understanding of communication among patients, families, physicians, nurses, and other care providers, and thereby enhance current understanding of decision making. Communication and decision making were also the focus of reflection and advice in the case study by Quill,23 the report on legal issues by Meisel et al,24 the call for insight and sensitivity to ethnic and personal differences by Crawley et al,25 and the urging of assessing and addressing religious and spiritual well-being articulated by Daaleman and VandeCreek.26 Indeed, attention to better communication, decision making, and pain relief skills has shaped most reforms to date, including the ambitious program to train practicing US physicians in the basic medical and interpersonal aspects of good care at the end of life.27

However, improving treatment options and decision making for individual patients will not be enough to reform end-of-life care. The Committee on Care at the End of Life convened by the Institute of Medicine4 called for broad social change, including deliberate implementation of improved health services delivery and more public and professional education and awareness. Some of these calls are being answered. Features in major news magazines28,29 and on public television30 reflect increasing public interest and fuel the public's expectation of reform. Programs developed by the Veterans Affairs health system,31 Breakthrough Collaboratives sponsored by the Center to Improve Care of the Dying and the Institute for Healthcare Improvement,32-34 and initiatives sponsored by The Robert Wood Johnson Foundation8 have encouraged innovations in service delivery.

Hospice programs represent one substantial innovation of the past quarter century that successfully addresses the care needs of some people coming to the end of life. Even though its merits have not been carefully evaluated, hospice enjoys considerable popularity and public trust. Hospice programs served approximately 29% of US residents who died in 1999, for a median of 29 days.7 The perspectives offered by Zerzan et al35 in this issue illuminate some of the growing pains of hospice, as care providers and the community work out how to use these programs and principles in nursing home settings. Hospice works within myriad limitations in enrollment and coverage, making these services either unavailable or available only for a few days or weeks to many who face serious illness and death.36

Society is not only facing a new reality but also a number of inherited dysfunctional conceptual models and categories. Commonly, people talk of "the terminally ill" or "the dying" as if they were describing a separate kind of person, discernible by prognosis and appropriate for a very different kind of services than anyone else. Most people, however, have ambiguous prognoses throughout the time that they live with their fatal illness. For instance, on the day before death, the median prognosis for patients with heart failure is still a 50% chance to live 6 more months, because patients with heart failure typically die quickly from an unpredictable complication like arrhythmia or infection.37 Often, a chronically ill patient can "hold on" for a long time, until a complication overwhelms his or her fragile reserves. Good care at the end of life will have to include long-term care for the very sick, since no method can target only those patients who are sure to die soon.38

Research and reforms to date have been important, but they have been constrained by working within the limitations imposed by a care system that simply does not support people with long-term, progressive disability and eventual death. Developing a reliable care system for the very sick will require far-reaching and rapid reforms. Public and professional discussion is turning away from claims of "rights" and "choices" and toward a search for better funding, accountability, regulation, and monitoring of progress. However, the reform strategy of defending a right to choose from among care strategies cannot solve many problems if patients do not understand the choices20 or if there are no desirable choices available. Furthermore, many issues seem ill suited to reform simply through empowering patients to make their own choices without redressing underlying systems that make good care difficult to obtain. Virtually no patient wants serious pain. The problem is not lack of the patient's authority to choose, but lack of a care system that can reliably prevent and relieve pain. Establishing a better care system will require changes in payment, regulation, education, and standards of care. In short, good care is at least as much a question of social engineering as it is a question of patient autonomy.

To guide reforms, many participants in health care should embark on an era of innovation, evaluation, and learning:

  • Clinicians serving those with eventually fatal illness should set about improving personal practices. For example, clinicians could learn how best to communicate with and support seriously ill patients and families over time,27,39,40 including how to make symptoms manageable41 and how to help patients live fully within the constraints imposed by disease.42 Berwick and Americans for Better Care of the Dying43 have proposed a set of immediate improvements for clinicians.

  • Provider organizations, including hospitals, nursing facilities, home care, hospice programs, emergency medical services, insurers, and professional organizations, should constantly improve the reliability and scope of their services. Improving quality and instituting accountability have been demonstrably effective in, for example, relieving pain, making plans to avoid emergency responses to complications, and supporting family caregivers.32-34,44 Public preference surveys18,25,26 provide insights to guide this work.

  • Regional cross-referring provider organizations that share in serving a region's population must also eliminate gaps and disruptions in care that are occasioned by transfers of patients with long-term, eventually fatal, chronic illnesses among programs and by inconsistencies in what various organizations will provide.

  • Government agencies urgently need to encourage innovation with funding, visibility, and dissemination of good ideas. In the United States, Medicare and the Health Care Financing Administration must take the lead, since 83% of US residents who die are covered by Medicare.1 However, the clinical, educational, and research services of the Department of Veterans Affairs, the Health Services and Resources Administration, and the Medicaid program should also be brought to bear. In other countries, the locus of funding and accountability may be different, but payment, coverage, and quality-regulating policies will always have a role and generally will need modification to accommodate the new demographics.

  • Health services research sponsors at the Agency for Healthcare Research and Quality, the National Institutes of Health, private foundations, voluntary organizations addressing specific diseases, and the Centers for Disease Control and Prevention should encourage development of methods appropriate for measurement and analysis of novel concepts such as improved living while near death, as well as development of manpower to carry out service delivery research. Measuring end-of-life experience and quality of care in different geographic and ethnic populations is especially important for guiding reform.

  • Researchers in bioethics should begin to address the serious conundrums that will complicate policy revisions. Important issues include the appropriateness of high-cost care when life is short, fairness to various populations in bearing risks and benefits of innovation, and ethics of biomedical research and quality improvement in such vulnerable populations.

  • Biomedical research sponsors, such as the National Institutes of Health, should fund innovative studies to advance understanding of the mechanisms of symptoms and to improve the prevention and relief of symptoms and suffering.

  • Health care professionals and citizens need to learn to label certain routine current practices as outrageous.45 Unrelieved pain46 and inattention to caregiver support and advance care plans47 are serious errors that cause much suffering and are perpetuated by tolerating them as routine practices.48,49

  • Policymakers and local communities will have to learn how to support caregivers (both family caregivers and paid personal caregivers).50-53

  • Professional education must address competence in serving patients with serious, eventually fatal chronic illness. Major curriculum development and teacher-trainer programs have been initiated54-57 and will need to be sustained and extended.

  • Medicare and Medicaid must reform coverage and regulatory policy to encourage sound improvements, and clinicians will have to adopt new and better practices. Without these reforms, all the rest yields little.

The challenges of living a long time would be the envy of any previous generation, but they are unfamiliar challenges. Unfortunately, the best ways to rearrange current roles and services to respond effectively remain unknown. Enough has already been done that substantial reform seems to be within our grasp. Now, physicians and other health care professionals and policymakers need to build on that momentum and catalyze change more quickly, with better data to guide us, spurred by the urgency of relieving the unnecessary suffering that faces our patients and ourselves.

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