Spirituality and the care of patients at the end-of-life: an essential component of care

Spirituality is an essential component of the care of patients with serious illness and those that are dying. Dame Cicely Saunders developed the hospice movement based on the biopsychosocialspiritual model of care, in which all four dimensions are important in the care of patients. Of all the models of care, hospice and palliative care recognize the importance of spiritual issues in the care of patients and their families. The National Consensus Project Guidelines for Quality Palliative Care, in the United States, provides specific recommendations about all domains of care including the spiritual domain, which is recognized as a critical component of care (The National Consensus Project for Quality Palliative Care www.nationalconsensusproject.org). Studies indicate that the majority of patients would like their spiritual issues addressed, yet find that their spiritual needs are not being met by the current system of care. Interestingly, spirituality is the one dimension that seems to get slightly less emphasis than the biopsychosocial dimensions of care. Some reasons may include the difficulty with definitions of spirituality for clinical and research purposes, the time constraints and financial burdens in the current healthcare system in the United States, and the lack of uniform training for all healthcare professionals. Yet, there are theoretical and ethical frameworks that support spiritual care as well as some educational models in spirituality and health that have been successful in medical education in the United States. Spirituality can be seen as the essential part of the humanity of all people. It is at its root, relational and thus forms the basis of the altruistic care healthcare professionals are committed to. Spirituality has to do with respecting the inherent value and dignity of all persons, regardless of their health status. It is the part of humans that seeks healing, particularly in the midst of suffering. Spiritual care models are based on an intrinsic aspect that calls for compassionate presence to patients as well as an extrinsic component where healthcare professionals address spiritual issues with patients and their loved ones. Currently in the healthcare system, evidence-base models are the criteria for practice recommendations. Yet, spirituality may not be amenable entirely to strict evidence-base criteria. As hospice and palliative care continues to develop as a field, healthcare professionals are challenged to think of ways to advocate for and include the spiritual dimension of care.     

Looming threats to the intimate bond in hospice care? Economic and organizational pressures in the case study of a hospice

Hospice organizations are assailed by stiff competition, ever-rising costs, limited funding, and policy changes. Do such pressures stifle the high quality of care these organizations strive to provide? As a case-in-point, we draw from the mid-1990s accounts of caregivers at a nonprofit hospice in a Midwestern city in the United States. We maintain that economic pressures drive organizational restructuring, which then weakens working conditions and, thereby, weakens the staff-client relationship. We discuss effects upon worker behaviors, the worker-client relationship, and client care. This ethnographic case study signals the need to closely examine the threats that current economic and organizational pressures in the United States may pose to the quality of hospice care.     

Overcoming barriers to access and utilization of hospice and palliative care services in African-American communities

While there is ample evidence to support the need for hospice and palliative care services for African Americans, only 8% of patients who utilize those services are from African-American communities. The underutilization of end-of-life and palliative care can be attributed to several barriers to service access including incompatibility between hospice philosophy and African-American religious, spiritual, and cultural beliefs; health care disparities; distrust of the medical establishment; physician influence; financial disincentives, and hospice admission criteria. Suggestions for dismantling barriers to care access include developing culturally competent professionals in the health and human services, expanding the philosophy of hospice to include spiritual advisors from client communities, and funding national initiatives to promote improved access to health care at all stages in the life cycle of members of all underserved communities.     

Family care before and after bereavement

Distress reverberates throughout the family during palliative care and bereavement, inviting consideration of a family-centered model of care. Targeting families thought to be "at risk" has merit. The Family Focused Grief Therapy model was tested in a randomized controlled trial of 81 families (353 individuals) and bereavement outcome is reported here for treatment completers compared to controls. There were no significant baseline differences between treatment completers and non-completers. Significant reduction in distress occurred at 13 months post death for the families completing treatment, with further improvements for the 10% of individuals most distressed at baseline. A preventive model of family-centered care applied to those at greatest risk is meritorious and in keeping with the aspirations of Cicely Saunders for improving the quality of hospice care.     

Spreading the word ... hospice information systems

The rapid spread of Saunders' thinking across the world has been facilitated by the Hospice Information service and library at St Christopher's Hospice which she helped to create and further enhanced by Help the Hospices. We have set this article in the context of the Web and other information systems as they are developing today. "Connecting people" and "collecting people's experiences" were terms often used by Cicely Saunders when she described the work of Hospice Information, a service that has in some measure contributed to the rapid spread of her thinking across the world and which is currently in close contact with palliative care workers in over 120 countries. Connecting--or networking--putting people and organizations in touch with each other for mutual benefit and collecting and disseminating people's experiences are central to our work as a U.K. and international resource on hospice and palliative care for professionals and the public. Add to these the crucial role of information provision and advocacy for patients, carers, and health professionals alike and we hope that you may begin to appreciate how our respective organizations have contributed to the spread of Cicely Saunders' vision.     

Patient care: past, present, and future

The 40 years since St Christopher's Hospice opened has witnessed a burgeoning international interest in palliative care. Its key characteristics comprise a focus on the whole-person (physical, psychological, social, and spiritual), patient-centeredness (partnership with and empowerment of the patient and family), openness and honesty in communication, an acceptance of the inevitability of death coupled with improvement in the quality of life, multi-professional teamwork integrated with community (volunteer) involvement. Although much has been achieved, much remains to be done. Both in resource-poor countries and in more wealthy ones, the scope of palliative care has changed. Initially in the United Kingdom, palliative care was mostly limited to cancer patients but now strenuous efforts are being made to extend coverage to other patient groups, e.g., those with end-stage heart disease or renal failure. In India, with a dearth of chronic care facilities, palliative care services increasingly embrace those with chronic disability as well as progressive end-stage disease. In Sub-Saharan Africa, the devastating impact of AIDS is having a major impact on the development and delivery of palliative care. To maximize the benefits of limited financial and other resources, a strategic approach is necessary. The World Health Organization emphasizes three essential foundation measures: health service policy, public awareness and professional education, and drug availability. However, at the end of the day, if we are truly to honor Cicely Saunders, palliative care must remain a movement with momentum, combining creative charisma with inevitable bureaucratic routinization.     

End-of-life care around the world: achievements to date and challenges remaining

From the moment her interest in terminal care was awakened, Cicely Saunders was alert to the international dimensions of the subject. Her first patient in the late 1940s was an emigré Polish Jew dying alone and in isolation in a busy London hospital. Her letters from the 1950s onwards show an unquenchable thirst for new knowledge and a span of contacts and communications that was global in its reach. By the early 1960s, she was making fact-finding visits to the United States and Europe. Even before it opened to patients, St Christopher's Hospice was a beacon of inspiration to like-minded colleagues from many countries, eager to see how the model of practice was being operationalized and--more important still--how it could be adapted and modified in other settings. In the later years of her life, Cicely Saunders remained in contact with colleagues all over the world. She wrote introductions to numerous textbooks and collections; recorded interviews that were broadcast at international conferences; harnessed her name and energies to major efforts to promote palliative care globally; and, to the very end, served as a source of inspiration to palliative care activists, policy makers, educators, and researchers. As this special issue of the journal demonstrates so eloquently, that legacy lives on.     

Medicare and Medicaid: the first successful effort to increase access to health care

The passage of Lyndon Johnson's health care legacy, Medicare and Medicaid, in 1965 represents the last time that health reform legislation expanding access to care was successfully proposed and implemented in the United States. Access, of course, represents only half the pie in health reform, the other part being the organization of the health care system. There has never been any major legislation passed through both houses of Congress and signed by a President that changed the organization and delivery of health services. It seems certain that President Clinton will propose legislation dealing with both access to and organization of our health care system. Though it may not have seemed so at the time, President Johnson had it easy compared to the challenges confronting President Clinton.     

An emergency department perspective--Part one

High patient volumes requiring rapid turn around times, critical decision making processes, and a necessity for establishing an accurate working diagnosis are a few of the many challenges in hospital emergency departments. Quality management, rather than quality assurance, most accurately describes how activities in the emergency department should be monitored to meet these challenges. Already an important factor in manufacturing and service industries across the United States, quality management will become the essential driving force in the health care industry. To survive in the '90s, the emergency department must include in its goals the development of plans and processes that meet the challenge of the ED environment and that focus on customer satisfaction.     

Development of a local Physician Executive Leadership Program

Dramatic changes are occurring at a rapid pace throughout the United States in virtually all aspects of health care delivery. Physicians, hospitals, consumer groups, and others are thus facing new and greater uncertainties and are forced to adapt to a continually shifting environment. Fundamental change of this magnitude has and will continue to result in the formation of new alliances and organizations within which physicians and others will be forced to function. To participate effectively in these processes of change and to maintain influence within these new organizations, physicians will need leadership and management skills. To address the challenges facing current physician leaders and the need to develop more effective leaders, Sharp HealthCare developed its Physician Executive Leadership Program. This article describes the program and summarizes some of the lessons learned regarding the training of physician executives and leaders in today's changing health care environment.     

National health insurance--to be or not to be

It has been pointed out by advocates of change in the U.S. health care delivery system that, with the exception of the Republic of South Africa, the United States is the only industrialized nation without a system of national health care. Rising costs and an increasing percentage of Americans without insurance and with limited access to health care services has heightened interest in the development of a mechanism for payment for health care services in this country.     

Physician payment in Canada, Germany, and the United States

As the debate about reforming the U.S. health care system intensifies, interest has focused on three alternative delivery systems: the predominantly private-sector model in the United States, the provincial-government health insurance model of Canada, and the social insurance model of Germany. The organization of physician payment is an important part of all these health care systems. To maintain an affordable system that delivers high-quality care, payment to physicians must be sufficient to attract and maintain an able group of doctors, while not exceeding an amount that the country can afford. In this article, these three systems will be examined, and an attempt will be made to apply the lessons learned from Germany and Canada to the direction of physician payment reform in the United States.     

Nursing home care: ensuring quality.

There are more than 17,000 nursing homes in the United States providing care for 1.7 million disabled and elderly individuals. Medicare and Medicaid paid $28 billion in 1997 for nursing home services, more than one half of all nursing home expenditures. Improvements in the quality of care in these facilities and ensuring value for public expenditures has been a long sought after goal. Recent actions by the federal government are designed to strengthen state and federal authority and processes to accomplish this goal. Physician leadership in this area is essential to its success.     

Primary care: the driver in health care reform

The changes occurring in the health care industry have resulted in a cost-quality competition that has not been present in the past. Because of this competition, managed care is a growing way of financing and providing health care to the people of the United States. Managed care depends heavily on competent primary care physicians. Because primary care physicians are in short supply, the status and financial rewards of primary care practice are increasing. The primary care physician will be the dominant force in medical practice in the immediate future. He or she is capable in a managed setting of resolving the perceived problems of the health care industry in responding to the drivers of health care reform. Costs are reduced while quality is maintained. Access to health care is improved, and fragmentation of health care is significantly lessened.     

How much administration is today's physician doing?

The substantial changes in the organization and financing of health care services that have occurred in the United States over the past decade have helped to facilitate a growing role for physicians in health care management. These administrative roles for physicians are becoming increasingly important within many health care institutions with regard to such issues as cost containment and cost effectiveness, quality assurance and professional standards, and access to care. The growing complexity and diversity of the delivery system have created the need for more physicians to become involved in "orchestrat(ing)" the management of the medical-industrial complex."     

Precautionary Regulation in Europe and the United States: A Quantitative Comparison

Much attention has been addressed to the question of whether Europe or the United States adopts a more precautionary stance to the regulation of potential environmental, health, and safety risks. Some commentators suggest that Europe is more risk-averse and precautionary, whereas the United States is seen as more risk-taking and optimistic about the prospects for new technology. Others suggest that the United States is more precautionary because its regulatory process is more legalistic and adversarial, while Europe is more lax and corporatist in its regulations. The flip-flop hypothesis claims that the United States was more precautionary than Europe in the 1970s and early 1980s, and that Europe has become more precautionary since then. We examine the levels and trends in regulation of environmental, health, and safety risks since 1970. Unlike previous research, which has studied only a small set of prominent cases selected nonrandomly, we develop a comprehensive list of almost 3,000 risks and code the relative stringency of regulation in Europe and the United States for each of 100 risks randomly selected from that list for each year from 1970 through 2004. Our results suggest that: (a) averaging over risks, there is no significant difference in relative precaution over the period, (b) weakly consistent with the flip-flop hypothesis, there is some evidence of a modest shift toward greater relative precaution of European regulation since about 1990, although (c) there is a diversity of trends across risks, of which the most common is no change in relative precaution (including cases where Europe and the United States are equally precautionary and where Europe or the United States has been consistently more precautionary). The overall finding is of a mixed and diverse pattern of relative transatlantic precaution over the period.     

Training and organizational commitment among nurses following industry and organizational change in New Zealand and the United States

This survey study examines the relationship between employee attitudes related to training and organizational commitment among a sample of nurses in New Zealand and the United States. The magnitude of recent restructuring to New Zealand's public health system allows for an examination of employee attitudes towards training and organizational commitment in comparison to nurses from similar sized hospitals in the United States. Results show that perceived access to training, supervisory support for training, motivation to learn from training and perceived benefits of training were positively related to the affective and normative components of organizational commitment. Several significant differences were found on both training and organizational commitment variables between New Zealand and the United States. The findings are discussed in terms of their theoretical and practical application to human resource development (HRD) outcomes and the management of HRD in health care settings.     

National planning in the United States

This paper is concerned with the relatively new interest in national planning in the United States. The effects of the Arab oil embargo and price increases, impending scarcities of minerals, inflation, unemployment, and other problems seem to be reversing the American public's negative views of planning by the Federal government. Assuming that negative sentiments are still strong and aware of the difficulty of institutional change, the authors submit a modest proposal for initiating a formal system of indicative national planning.The proposal is based upon an analysis of the economic challenges facing the United States and the apparent inability of the Federal government to respond effectively to change. The solution is seen as the need for an economic intelligence activity coupled to the formulation of ‘inventories of policy alternatives’, with a minimum of structural change or expansion in governmental structure.The recent Humphrey-Javits proposal for national planning is discussed briefly and critically.     

Study tour examines health care systems in Germany, Holland--Part I: A comparison of three health care systems

In October 1992, the American College of Physician Executives sponsored a study tour to Berlin, Germany, and Amsterdam, Holland. Meetings were held with government officials, third-party payers, and providers, and onsite visits were made at hospitals, clinics, and academic centers. The purpose was to study the health care delivery system in those countries and to share some insights with the countries' hosts on the U.S. system. Beginning in this issue of the journal, 5 of the 10 study tour participants describe their impressions of the tour and of the health care systems in the countries that were visited. This first report compares the health care delivery systems of the United States, Germany, and Holland. In subsequent reports, the German and Dutch health care systems will be described in greater detail and the ability of the United States to adopt European health care systems will be assessed.     

Health care costs tied to many issues

Although, in 1990, the United States spent about $750 billion (12.2 percent of the Gross National Product) on health care, 31-37 million people in this country are uninsured. Another 4 million people are thought to be underinsured. We have one of the highest infant mortality rates among developed industrialized nations and rank 19th in health care and well-being among those nations. Our life expectancy is lower than those of some third-world countries. The United States and South Africa are the only two industrialized nations without a national health care policy. In spite of these statistics, U.S. health care costs continue to rise and, by the year 2000, are expected to reach $1.5 trillion (15 to 17.5 percent of the GNP. Per capita spending on health care will reach $5,515 by the year 2000, compared with $2,425 in 1990 and $1,016 in 1980.