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.     

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.     

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.     

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.     

Development of hospice and palliative care in the United States

More than 30 years have passed since palliative care was introduced in the United States, and what began as a small rebellion has evolved into a fairly large health care industry. Although the palliative care movement has considerably improved the care given to those at the end of life, many challenges remain for palliative care providers in the United States. This article discusses the history of hospice and palliative care in the United States, the Medicare Hospice Benefit, the growth of hospice and palliative care, and challenges such as the need for regulatory change, workforce issues, improving access to care, and improving the quality of palliative care.     

Seeing systems in health care organizations

"Systems" in health care organizations are difficult to visualize and understand by people across the organization. Systems exist as behaviors that have reasons and consequences rather than strict, linear cause and effect relationships. Learn how to sketch and see the systems at work in health care, and how to change them to help end the blame game.     

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.     

Political Exhortation, Patient Expectation and Professional Execution: Perspectives on the Consumerization of Health Care

A central theme underpinning the reform of public-sector services in western economies since the 1980s has been the emphasis on reorienting service provision around the user. Public-sector organizations have been forced to reappraise the design of the service delivery process, in particular the service encounter, to take account of the resultant changes in service users' expectations. Such focus on the service user has fundamental implications for public-sector professionals, specifically challenging the dominance of service professionals in the design and delivery of services. Based on a survey of patient attitudes towards service provision in the National Health Service in Scotland (NHSiS) and in-depth interviews with senior hospital clinicians and managers, the paper critically examines the reaction of both patients and professionals to politically driven initiatives to reorientate the delivery of health-care services. Specifically the paper explores the emerging perspectives of both patients and professionals towards the consumerization of health care and the changing nature of the relationship between patients and professionals within a publicly funded health-care system.     

Ascendancy of primary care will create role intensification for physician executives

The need for physicians in management roles in the health care system has never been greater. And the years ahead will see that need broadened and intensified. To maintain their leadership role in medical affairs in hospitals and other types of health care delivery organizations, physician executives will have to envision provider organizations and systems that have not yet been conceived, let alone developed and implemented. They have to become totally open-minded and futuristic in their thinking. And they will have to help other physicians accommodate this new way of thinking if the medical profession is to continue in a leading role in health care matters. Although numerous factors will have to be anticipated and analyzed by these new physician leaders, the ascendancy of primary care in a managed health care world long dominated by the technical and technological superiority of hospital care will present a particular challenge to the physician executive.     

Mexican and Swedish Managers' Perceptions of the Impact of EIS on Organizational Intelligence,Decision Making,and Structure*

Although information technologies in business organizations around the world may be very similar, the meanings conveyed through the technologies may be dependent on managerial values and national culture. Cultural differences need to be understood before information technology developed for organizations in one country can be effectively implemented in organizations in another country. Drawing on survey responses from managers using Executive Information Systems (EIS) across many organizations in Mexico, Sweden, and the United States, the current study examined whether cultural differences influence perceptions of the relationship between Executive Information Systems' use and various outcomes related to decision-making behaviors and processes. The study found significant differences, predicted by cultural factors, in the impact of EIS use on senior management decision making. The findings confirm the notion that IT is used by executives to reinforce the decision-making behaviors valued in their culture.     

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.     

Making integrated health care work

This article summarizes the authors' thinking on value added in health care, and offers examples of the major strategies being implemented by integrated systems across the United States to increase their value and improve their competitive positioning. The research results are based on a review of published literature on 150 health care organizations in various stages of integration, and 20 in-depth case studies of integrating systems.     

St Christopher's and the future

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of "insistent conscience" of the health care service with continued cost-effective clinical innovation.     

Preserving the soul of medicine and physicians: a talk with David Whyte. Interview by Richard L. Reece

Richard L. Reece, MD, interviewed David Whyte, a poet, consultant, and author of The Heart Aroused, on December 15, 1999, to discuss preserving the soul of physicians in corporate America. David describes the soul as "a measure of our belonging in the world. When there is little sense of belonging, there is very little sense of soul." In the workplace, he thinks about whether "people have a sense of belonging to the particular work or the organization." He talks about life in the upper world of the workplace and life in the dark subterranean caves where the soul lives. The soul is where people's true creativity and imagination resides ... and by inviting it into the workplace, organizations and employees can become more successful, innovative, and adaptable. In corporate settings, he uses poetry to bring an understanding of the process of change, helping clients to understand individual and organizational creativity to transform the workplace. The poetry can teach and touch those places that the corporate language cannot speak to.     

Researching "good death" in a Hong Kong palliative care program: a clinical data-mining study

This study operationalizes and assesses the percentage of "good deaths" achieved among Chinese cancer patients in a palliative care program, the profile of these patients, the relationship between patients with a good death and psychosocial factors, and the differences in background factors, and physical and psychosocial conditions between patients who experienced a good death and those who did not. Clinical data mining was the research method used. Records of deceased cancer patients between 2003 and 2005 in a palliative care unit were the sole data source. Good death was operationally defined as the patient's record indicating no pain (physical) or anxiety (psychological), and having open and honest communication with family (social) in the final assessment by the Support Team Assessment Schedule (STAS) just before death. Using these criteria, about one-fifth of patients (21.5%; 137 out of 638) experienced a good death. Those with a good death were significantly older and were in palliative care longer. Their records also indicated lower levels of constipation, insomnia, oral discomfort, and family anxiety at their first and at their final STAS assessments. Good death was positively associated with recorded indicators of fullness in life, caregivers' acceptance and support, and negatively with reported feelings of upset about changes in the course of their illness. The results heighten awareness among social workers and other healthcare professionals about the value of good death in patients in palliative care. This empirically-based awareness can foster professionals' ability to set intervention objectives to help patients in palliative care achieve this universally accepted goal.     

The new health care civilization: integration of physician land and manageria

Changes occurring in health care demand that physicians expand their professional knowledge and skills beyond the medical and behavioral sciences. Subjects absent from traditional medical education curricula, such as the economics and politics of health care, practice management, and leadership of professional organizations, will become important competencies, particularly for physicians who serve in management roles. Because physicians occupy a central role in planning and allocating medical care services and other health care resources, they must be better prepared to work with other health care professionals to create a new civilization, even if this means leaving the cloistered domain of "physician land" to serve as interface professionals between the delivery of medical services and the management of health care. Our research findings and conclusions strongly suggest that economic, management, and leadership competencies need to be incorporated into the professional development of physicians, especially in postgraduate and continuing education curricula.     

Knowledge Groups: A Model for Creating Synergy Across the Public Sector

Private sector lays a strong emphasis on acquiring knowledge, because in today’s world, it is knowledge that is the primary source of sustained profitability. Public sector organizations also need to be learning organizations. However, they are constrained by a number of factors. This paper discusses different models for knowledge sharing, but finds them inadequate for the public sector. It then develops a model of Knowledge Groups that creates synergy across the public sector by formally gathering professionals from different and even competing public sector organizations for a clearly defined and mutually valued goal. The paper also identifies risks that may lead to the failure of Knowledge Groups. It concludes by presenting a case study on Energy Management and analyzes the dynamics of interaction between Group members for formulating guidelines and standards on the subject.     

The information revolution: opportunities and pitfalls for patients and providers

The Information Revolution is changing everything in our world. Although this era is developing and evolving, some have described networks, globalization, diffusion of power away from professionals, and information overload as direct results of the Information Revolution. These megatrends are affecting every person and every organization in the world, and this article examines them to see how they might affect medicine and the delivery of health care in the millennium. What is truly significant about the changes brought about by the creation of cyberspace is that through computers, digitized information can be inexpensively and quickly transmitted anywhere in the world. Many of the traditional ethical and professional standards of medicine are feeling the strain of being applied to the strange, unfamiliar world-cyberconsultations and other virtual medical applications are explored. Physicians who understand this revolution will have a far better chance of controlling their destinies--and more importantly, aiding their patients in the quest for good health.     

The importance of end-of-life care in nursing home settings is not diminished by a disaster

The emphasis in disaster situations is on preserving life, and this goal is both appropriate and laudable. There is a risk, however, that the needs of people who are dying can become lost when there is a sudden surge of people needing acute intervention. There are significant ethical considerations inherent in society's prioritization of care needs across the acute, rehabilitative, and palliative spectrum in general, let alone in a disaster situation. These ethical conundrums are not the focus of this article. Rather, we anchor our discussion on the assumption that care needs are equally valid, and our purpose is to explore the issues that impact the provision of quality end-of-life care in nursing home settings for those who require this care when a disaster occurs. Nursing home residents, in particular, are at heightened risk for experiencing negative disaster-related outcomes due to compromised physical or mental health that requires skilled nursing care. Moreover, within the already vulnerable nursing home population are many people who are receiving palliative end-of-life services when a disaster strikes. Education and training in end-of-life services for nursing home staff, disaster emergency responders, and other lay people is vital to build capacity for adapting the delivery of these services in disaster situations in the interest of equity and human rights. Given the present lack of guidance in the literature as to what end-of-life care looks like when adapted to the context of disaster response, there is also a pressing need for research to inform this discussion. The purpose of this article is to draw attention to this topic and highlight some of the critical issues, gaps, and opportunities.     

Determinants of Trust in Industry, Government, and Citizen''s Groups in Japan

The causal structure of the determinants of trust in industry, government, and citizen's groups in Japan was investigated on the basis of Peters et al. (1997). A preliminary survey of the adequacy of the hypotheses proposed by Peters et al. in Japan was made. A set of hypothesized determinants of trust in Japan was proposed based on results of the preliminary survey. Questionnaires concerning perceptions of trust in the organizations and the proposed determinants were sent by mail to residents in the area where environmental risk problems had emerged. The data were analyzed by covariance structure analysis to construct models of trust in industry, government, and citizen's groups. As a result, "openness and honesty," "concern and care," "competence," "people's concern with risks," and "consensual values" were found to be factors directly determining trust. Suggested in particular is that "openness" of an organization is not attained merely by information disclosure, but also by bi-directional communication with the people. Moreover, these models include "consensual values," which do not appear in the model proposed by Peters et al.