Improving Palliative Care

  1. Diane E. Meier, MD;
  2. R. Sean Morrison, MD; and
  3. Christine K. Cassel, MD
  1. From Mount Sinai School of Medicine, New York, New York. Acknowledgments: The authors thank several anonymous reviewers for helpful suggestions. This work was adapted from a paper presented at the Milbank Memorial Fund in October 1994. Grant Support: Drs. Meier and Morrison are recipients of an Open Society Institute Faculty Scholars Award of the Project on Death in America. Dr. Morrison is a Brookdale National Fellow. This work was also supported by grants from the United Hospital Fund, the Commonwealth Fund, the Mount Sinai Hospital Auxiliary Board, the Greenwall Foundation, the Kornfeld Foundation, and the Milbank Memorial Fund of New York City. Requests for Reprints: Diane E. Meier, MD, Box 1070, Mount Sinai Medical Center, New York, NY 10029. Current Author Addresses: Drs. Meier, Morrison, and Cassel: Box 1070, Mount Sinai Medical Center, New York, NY 10029.
     
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    Abstract

    Although most deaths in the United States occur in hospitals, data suggest that hospitals and physicians are not equipped to handle the medical and psychosocial problems of dying patients.In this article, we review the barriers to achieving a peaceful death, including inadequate medical professional education on palliative care, and public and professional uncertainty about the difference between forgoing life-sustaining treatment and active euthanasia, and health professionals' difficulty recognizing when patients are dying and the associated sense that death is a professional failure. Other barriers include fiscal constraints on the length of stay, the number of nurses available to care for dying patients, legal and regulatory constraints on obtaining opioid prescriptions, and a segregated system of hospice care that requires patients to be separated from familiar health care providers and settings in order to receive palliative care at the end of life. Identifying the opportunities that can improve the delivery of palliative care at the end of life is the first step toward developing corrective approaches. Strategies that enhance these opportunities are proposed.

    The need to enhance palliative care of dying patients has become apparent in the United States. Although hospitals have traditionally focused on treating episodic acute illness and prolonging life, 65% of adults in the United States now die in hospitals [1]. Data suggest that hospitals and physicians are not equipped or trained to handle the medical and psychosocial problems that face those who are dying [2-5]. Although the barriers to achieving a peaceful death are many, they can be grouped into three broad categories: professional knowledge of and skills in palliative medicine, professional and public attitudes about the goals of medicine, and financial and structural attributes of the health care industry. In this article, we outline a series of strategies that are designed to overcome these barriers.

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    Improving Professional Knowledge of and Skills in Palliative Medicine

    Palliative medicine has been defined as “the study and management of patients with active, progressive, far advanced disease, for whom the prognosis is limited and the focus of care is the quality of life” [6]. In the United States, curricula at medical schools and in residency training programs contain minimal formal courses on death and dying [7-15]. The result has been inadequate professional knowledge of palliative medicine [7, 16, 17]. For example, the failure of medical professionals to adequately treat pain has been consistently demonstrated in diverse patient populations [3, 4, 7, 18], and physician-initiated discussions about the goals of medical care at the end of life seldom occur [4, 5, 19]. Enhancing palliative care education at all levels of professional training is a necessary first step in changing physician behavior [20]. Curricula in palliative medicine have been published by numerous organizations [9, 21-27] and should be combined with efforts to teach the difficult process of prognostication to better enable physicians to time the initiation of palliative interventions [28, 29]. To overcome the well-documented difficulty that physicians have in talking with patients about end-of-life care [2-4, 30-33], curricula must address the issues of physician–patient communication and acknowledge the influence of fear of death on those who become physicians [34-36]. It is important to teach that patient suffering can be alleviated by applying existing knowledge and that the time before death can be a rich and rewarding opportunity for communication between patients and their families [37, 38]. Palliative care must become an integral component of primary medical care so that the arbitrary dichotomy between the medical care of persons who are perceived as having curable or chronic illnesses and those who are recognized as dying becomes a continuum, with palliative measures gradually taking precedence over life-prolonging efforts when death is imminent.

    Practical means of accomplishing these objectives include establishing a staff of teaching mentors who are appropriately compensated, creating endowed chairs and professorships, and continuing to provide financial support for research and programmatic experimentation. Mandated inclusion of didactic curricula and clinical teaching programs on palliative care in medical school and residency training programs, and inclusion of these topics on board certification examinations and in residency review committee and hospital accreditation requirements, have already been initiated and will strongly influence teaching priorities [39]. Others have suggested practice guidelines and continuous quality-improvement programs as ways to enhance education in and delivery of palliative care [27, 40-42].

    Several educational initiatives in palliative medicine have begun in the United States. The Project on Death in America, which was founded by The Open Society Institute, supports a faculty scholars program that fosters leadership in palliative medicine at major teaching hospitals [43]. Both federal sources and private foundations are funding research and educational initiatives in palliative care [44, 45], and efforts by the American Board of Internal Medicine to include topics on palliative medicine in residency review criteria and on certification examinations are under way [25, 46].

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    Attitudinal Influences on the Delivery of Palliative Care

    Attitudinal influences on delivery of care to dying persons include confusion about decisions to forego life-sustaining treatment and euthanasia, fear and denial of death among medical professionals and the public, and a belief that prolongation of life is the predominant goal of medicine.

    The current debate on physician-assisted suicide has revealed public and professional disagreement and confusion about the difference between forgoing life-sustaining therapy (a legal right of every competent patient) and active euthanasia. Technologies permitting life support in severely ill patients have become standard practice at the end of life and have redefined what used to be clearly terminal situations as conditions for which physiologic life can be prolonged for variable and sometimes lengthy periods [47]. Perhaps as a result of the frequent use of such technologies in dying patients, many medical professionals may incorrectly believe that a decision to forgo life-sustaining treatment is equivalent to active euthanasia [48-50]. These beliefs constrain health care professionals to use any technologies that might prolong life because a conscious choice to withhold intervention and allow the patient to die of his or her underlying disease is perceived as euthanasia.

    Similar uncertainty surrounds the principle of double effect (when a dose of analgesics or sedatives given to control pain and discomfort may also hasten death) [48-50]. Despite the unequivocal ethical and moral acceptance of the principle of double effect by the medical community [51, 52], health care professionals remain unsure of the distinction between the administration of sufficient medication to treat suffering in dying patients and euthanasia. [48-50]. Such uncertainty results in inadequate control of distressing symptoms in terminally ill patients [3, 4, 7, 50] and may contribute to the public's increasing demand to legalize physician-assisted suicide [53-55].

    Addressing attitudinal influences on the care of dying patients requires fundamental shifts in the prevailing life-prolongation ethos of medicine. Some options that might achieve a change of attitude include 1) educating health care professionals and the general public about the legitimacy of prescribing analgesia and withdrawing life-sustaining treatments and the distinction between these decisions and active euthanasia; 2) establishing standards for futile care through consensus conferences and recommendations from professional organizations; 3) educating the public through media [56] on the limitations of medical technology and through improved physician–patient communication on the ability to achieve a peaceful death [36]; and 4) adopting more widespread use of advance directives as a tool to promote societal acceptance of the inevitability of death and the informed refusal of life-sustaining treatment [56]. Although some [4] but not all [5] recent studies suggest that advance directives have a limited effect on patient care, few of the studies were designed to assess the effect of advance directives on clinical outcomes. More public and professional familiarity with advance directives may be necessary before changes in outcomes can be measured. However, recent studies [4, 5] and news articles [57] clearly indicate that physicians must be educated to routinely ask patients about their wishes for medical care and to recognize that physicians are legally and morally bound to honor those requests [5, 58, 59]. Such communication is especially pressing in the context of terminal illness, when the achievement of a peaceful death assumes priority over prolongation of life.

    To restore a balance between a physician's obligation to prolong life and obligation to relieve suffering, a peaceful death must be acknowledged as a legitimate goal of medicine and as an integral part of a physician's responsibilities. The literature suggests that some physicians view the care of dying patients as beyond their responsibility [60, 61] and, according to one study [62], as a role that interfered with their medical education. This view is widely (although unconsciously) supported by medical school professors who lack knowledge of palliative medicine, thereby reinforcing the prevailing trend against recognizing and attending to the needs of dying patients [17, 63].

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    Barriers Presented by the Health Care Industry

    The organizational and structural characteristics of a health care delivery system can promote or inhibit palliative care for persons who are facing death [64]. Improving physician knowledge of and training in palliative care and changes in attitudes about what constitutes a good death and the value of achieving one can succeed only if concomitant changes in health care delivery support and ratify these efforts. The Joint Commission on Accreditation of Healthcare Organizations recently published standards [65] that include new requirements for palliative care of dying patients (specifying the “aggressive and effective” management of pain). The commission also addressed the issue of advance care planning and the psychosocial, spiritual, and cultural factors that influence patient care [65]. Such mandates can be powerful stimuli to change the organization and delivery of health care. Recent proposals [66, 67] for establishing inpatient palliative care units in teaching hospitals are another example of restructuring the delivery of health care. Such inpatient palliative care units already exist or are in formation in some centers and at medical schools [25, 68-70].

    Enormous pressures for cost-containment in medicine also inhibit palliative care. Length of stay has been substantially reduced as a direct consequence of the Medicare prospective payment system. Capitation is likely to further compress the length of hospital stays [71] but, if payment to hospitals is adequate, could provide the flexibility needed to apply resources more appropriately to dying patients. Symptomatic, terminally ill patients receive frequent adjustments in pain medication and often require careful management of dyspnea, delirium, or agitation. Such patients may take as long as several weeks to die in a highly labor-intensive, demanding clinical setting, resulting in inevitable conflict with utilization review requirements under the current system. The new treatment code for palliative care [72] recently established by the Health Care Financing Administration may begin to legitimize in-hospital palliative care by explicitly associating reimbursement with palliative care services [73].

    Laws that regulate opioid prescribing patterns inhibit access by requiring use of multiple-copy prescription forms, limitations on the number of tablets per prescription, and regulations for reporting on “habitual users” that stigmatize patients who need opioids and use them appropriately [51, 74]. Such strict regulatory oversight reinforces widespread public and professional misperceptions of opioids as drugs of abuse and addiction and results in limited prescribing for patients in pain. A serious commitment to educating both professionals and consumers about the low risk for addiction and the importance of good pain control is needed [75]. Modifications of state statutes and regulations that enhance the availability of medically needed analgesics, acknowledge the legitimate purpose of these medications, ease restrictions on prescribing long-term supplies, and create alternatives to burdensome prescription requirements [51] are also needed. Efforts to reform existing regulations are already under way in many states [76-78].

    The risk management approach followed by many hospitals views in-hospital death as an indicator of substandard delivery of health care, thus creating an incentive for medical staff to keep dying patients alive. In this context, recent legal judgments against hospitals that began or continued life-sustaining therapy in opposition to patients' previously expressed wishes or appointed health care agents' decisions [57] may cause realignment of risk assessment to encourage greater adherence to patients' wishes for care at the end of life.

    Hospice care for persons with a terminal illness is an obvious alternative to hospitalization. Unfortunately, this alternative is not available to or used by most dying patients [42, 79]. For patients to qualify for hospice care, their physician must certify that they have a life expectancy of less than 6 months [47, 79]. The difficulties in prognosticating the course of terminal diseases have been documented [28, 29, 80]. In addition, the hospice model requires abrupt cognitive and emotional shifts from acute care to hospice care as patients enter a completely new system of palliative care that is geographically and ideologically isolated from traditional and familiar health care systems and that frequently separates patients from their primary care providers.

    Barriers to palliative care exist even for patients who have access to the hospice system. Most hospice programs deliver care to persons who are dying in their own homes, in part because of the financial limitations of the Medicare hospice benefit. Very few inpatient hospices exist, and most of them provide care only during brief intercurrent illnesses or during the final days of life if home hospice care becomes too difficult for the family [47, 79]. Furthermore, the Medicare hospice benefit generally provides 4 hours of custodial home aide services [47]. Therefore, home hospice care requires the physical and emotional involvement and commitment of family members or friends if the family cannot afford paid caregiver support. Although hospice programs do offer trained volunteers [42] who can give some assistance, this resource is an inadequate substitute for paid support services. In addition to the practical aspects of caring for a dying person, most family members have never witnessed death and are uncomfortable with the prospect [2, 36]. Finally, the option of hospice care often is not considered until it is too late to be beneficial [80]. Given these difficulties, most persons who are dying never receive hospice care despite the availability of the Medicare hospice benefit.

    Capitated managed care programs could affect the treatment of dying persons if acute care was replaced with comprehensive home or inpatient hospice care [71]. Although the cost would depend on the timing of hospice referral [81], hospice care is less expensive (on average) than traditional medical care [40, 82-86], thus providing incentives for managed care organizations to advocate improvement in home hospice services. Adoption of practical measures could improve the care of dying persons while facilitating integration of palliative care into traditional hospital settings and hospice care into mainstream medicine. Measures might include expanding the Medicare hospice benefit to allow more custodial care support and promotion of earlier hospice referral. Greater public and professional awareness of the availability of hospice care is needed, particularly for persons dying of diseases other than cancer. In addition, hospice care must be made available to dying persons who do not have a family or whose family cannot provide the necessary care. Medical insurance coverage of hospice care is not standardized in the health care industry but varies among and within insurance programs [71]. Federal guidelines for coverage of hospice care under managed care programs should be developed to ensure equitable and adequate access.

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    Conclusion

    Most deaths occur in the hospital. Until hospice care in personal homes, inpatient hospice settings, and nursing homes becomes more accessible, the care of dying persons will continue to be primarily a responsibility of hospitals. Abundant evidence suggests that hospitals have done an inadequate job with this aspect of patient care for reasons that range from reimbursement and length of stay constraints to failure to recognize the inevitability of death and the importance of achieving a peaceful death. New programs that enhance palliative care of patients (Table 1) by educating health care professionals are urgently needed and are being developed by private foundations [43, 45] and medical organizations [25, 45, 87]. Structural changes in reimbursement policies (directing dollars from life-prolonging diagnostic and therapeutic interventions to palliative care services) may be one of the major benefits of the shift toward capitation and managed care. Effective October 1996, the International Classification of Diseases, Ninth Revision (ICD-9) initiated a code for palliative care [72] to be studied in preparation for hospital reimbursement for terminal care. Along with new hospital standards on the care of dying patients [65], the new ICD-9 code should help to legitimize palliative care services as part of a hospital's mission. Promotion of professional and public dialogue about the possibility, indeed desirability, of a peaceful death is needed to shift the expectations of both groups to realizable palliative goals for the dying.

    View this table:
    Table 1. Approaches to Improving Palliative Care*

    Public enthusiasm for legalization of physician-assisted suicide reflects widespread fear of the process of dying and a belief that hospitals are inadequately equipped and staffed to ease this passage. Although not all pain and suffering can be eliminated through palliative care, a far better standard for end-of-life care can be met by applying existing medical knowledge. The first step is to identify barriers to palliative care and develop corrective measures that simultaneously address the education and attitude of medical professionals and the influences of the health care system on care at the end of life. Such positive changes will improve the quality of the time before death and strengthen public trust in the medical profession.

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    1. Alert me to current issues