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.     

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.     

Barriers to completion of advance care directives among African Americans ages 25-84: a cross-generational study

Prior studies conducted in the area of Advance Care Directive document completion in African Americans have primarily targeted the elderly who are either institutionalized in skilled nursing facilities or are members of faith communities. Few studies have been done concerning barriers to Advance Care Directive document completion that include non-elderly African Americans. The purpose of this study was to identify the common barriers to advance care directive document completion across generations of African Americans ages 25-84. Using convenience sampling among various Baptist denominations of the African-American faith community of Buncombe County, North Carolina, 40 individuals ranging in age from 25-84 participated in multiple focus group sessions. Findings revealed participants shared three common barriers: 1) surrogate decision-making, 2) lack of education concerning advance care directive discussions and completion, and 3) fear and denial. Also revealed were barriers that varied across generations: 1) fatalism, 2) mistrust of the health care system, 3) spirituality, and 4) economics.     

New directions for an organised health care system in Germany: The concept of managed care

Against the background of continually rising public sector health costs in Germany, Michael Müller and Klaus Uedelhofen discuss the merits of ‘Managed Care’, a philosophy of organised health care, having its origins in the US in the early 1970s. Managed care is based on networking all separate groups within the healthcare system, standardising the services and performance, and distributing or sharing risks between all parties involved. Advantages, beyond cost reductions, include quality assurance, greater transparency, the establishment of therapy standards and increased responsibility by patients. The outlook for managed care in Germany looks optimistic.     

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.     

Reframing Resilience: Equitable Access to Essential Services

We urgently need to put the concept of resilience into practice if we are to prepare our communities for climate change and exacerbated natural hazards. Yet, despite the extensive discussion surrounding community resilience, operationalizing the concept remains challenging. The dominant approaches for assessing resilience focus on either evaluating community characteristics or infrastructure functionality. While both remain useful, they have several limitations to their ability to provide actionable insight. More importantly, the current conceptualizations do not consider essential services or how access is impaired by hazards. We argue that people need access to services such as food, education, health care, and cultural amenities, in addition to water, power, sanitation, and communications, to get back some semblance of normal life. Providing equitable access to these types of services and quickly restoring that access following a disruption are paramount to community resilience. We propose a new conceptualization of community resilience that is based on access to essential services. This reframing of resilience facilitates a new measure of resilience that is spatially explicit and operational. Using two illustrative examples from the impacts of Hurricanes Florence and Michael, we demonstrate how decisionmakers and planners can use this framework to visualize the effect of a hazard and quantify resilience-enhancing interventions. This “equitable access to essentials” approach to community resilience integrates with spatial planning, and will enable communities not only to “bounce back” from a disruption, but to “bound forward” and improve the resilience and quality of life for all residents.     

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.     

Computer-based patient records: a building block for health care reform

The fundamental need for better information management capabilities in health care is at risk of being overlooked in the proposals for major national changes aimed at providing health security, controlling costs, enhancing quality, and expanding access for citizens. In addition to these proposed macro changes (e.g., universal access, guaranteed benefit package, national health board, regional health alliances), successful reform will require transformation of health care delivery at the micro level. We must overcome provider-dependent variations in clinical practice patterns, in quality of performance, and in costs of services. We must ensure movement toward appropriate care rather than simple rationing. Individual health care professionals and institutions must acquire and use tools that will enable them to provide their services cost-effectively with consistent results. We must be able to assess and ensure value--i.e., appropriateness, effectiveness, and cost--of health services, apply that knowledge in each and every patient encounter, and track the impact of clinical decisions through an analysis of aggregated databases.     

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.     

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.     

Palliative care programs: what, why, and how?

Establishing a palliative care service can improve patient care and ease family concerns for patients who are hopelessly ill. For the hospital, such services can improve utilization outcomes. Take a closer look at a palliative care service operating for nearly five years at Mount Sinai Hospital in New York City.     

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.     

Informed decision making: the new paradigm

Health care cannot survive in its present form. It is becoming unaffordable for a large share of the country's population. Its quality and effectiveness inexplicably vary between communities and across time. With all these problems, the process of health care can be understood. All that are needed are good, basic data; its access, management, and analysis; and then presentation of facts and observations. Together, these functions describe the translation of data into information--the field of medical informatics. Information about such management concerns as clinical efficiency (which largely is related to appropriateness and cost-effectiveness) and about the realities of day-to-day medical practice can be used to improve the value of health care. Informed decision making is based solely on confidence that, given the right information and understanding, we can all make the right decisions. The right decisions mean better patient acceptance and satisfaction, a sense of value enhancement by payers, and support of the Hippocratic tradition.     

The electronic medical record system: health care marvel or morass?

The author considers the potential advantages and disadvantages, as well as possible unintended consequences, of introducing electronic medical record systems in health care organizations. Special consideration is given to the issues such information systems raise concerning privacy, confidentiality, and quality of care from both patient and provider perspectives. The potential gains from computerizing medical records include the benefit of instantaneous availability of patients' medical history, treatment regimes, and current health status in routine and emergency clinical situations. Ease of access to this information should reduce adverse outcomes. The added value of a complete and up-to-date medical record immediately available to medical caregivers seems undeniable. The potential disadvantages include issues around patient confidentiality and unauthorized access to records, the enormous capital investment for computer hardware, and system maintenance.     

Community health information networks. Threat or opportunity in the doctor-patient relationship?

The last half of the 20th Century has been witness to numerous changes in the delivery and financing of health care services. These changes have impacted the one-to-one doctor-patient relationship that may have existed in the past to become a complex of relationships. The contemporary physician collaborates with many other professionals to assist in the delivery, financing, and monitoring of health care services. These clinicians and other professionals require access to patient information to deliver care and secure payment. The patient understands this. Yet the patient has concerns about the widening circle of persons authorized to access his or her information. These concerns have been amplified by the development of community health information networks--(CHINs). This article focuses on CHINs, both patient concerns and the role physicians can take in developing them.     

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.     

The American health system: a contentious environment in the 21st Century

In the 21st Century, the American public and its elected officials will be unable to reach any overall consensus on our nation's health policies and priorities. With greater demands for health services and fewer fiscal resources, a more contentious environment in the health industry will ensue. As the American health system in the next 100 years continues to behave with an amalgam of competitive and regulatory approaches, it will be difficult to ensure that all Americans will receive universal access, equity, comprehensive benefits, and a high quality of care. For these reasons, the health system is predicted later on to swing away from market-driven to more state-oriented regulatory strategies as the United States attempts to blend such concepts as pluralism, regionalization of resources, and enforcing cost containment.     

PAs/NPs: forging effective partnerships in managed care systems

Three issues have dominated national health policy discussions over the past three decades--how to control health expenditures, how to improve access to care, and how to ensure delivery of high-quality health services. Cost remains the principal societal concern today. An important new dimension in this debate, however, is a critical examination of the impact of the structure of the nation's health workforce on health expenditures. Within this examination, policy makers are giving specific attention to the supply of health professionals, the role of primary care, and the identification of the most appropriate professionals to deliver primary care. In particular, a renewed interest is being shown in the potential of physician assistants (PAs) and nurse practitioners (NPs) to address all three issues. This article will examine the factors that prompted this focus on health workforce issues and the implications of the use of PAs and NPs for the structure and management of the health workforce in the future.     

Supply Chains and Global Health: An Imperative for Bringing Operations Management Scholarship into Action

Many people in developing countries do not have access to effective vaccines, medicines, and other life‐saving health technologies. Shortage of health care workers, severe financial constraints, and lack of awareness are some of the major obstacles that prevent higher access. However, ineffective and poorly designed supply chains for purchasing and distributing the medicines, vaccines, and health technologies are one of the most important barriers to increasing access. We argue that the ineffectiveness of the global health supply chain can be attributed largely to: coordination problems across multiple stakeholders with widely divergent objectives, lack of careful supply chain design, and use of myopic operational objectives and metrics. The operations management research community can contribute to improving this by applying existing knowledge to the field of global health delivery and by researching new frameworks of analysis which would then become the cornerstones for policy advice to those who design, operate, or finance these supply chains.     

Legal issues in accepting capitation

The effort to reduce the cost of medical, hospital, and ancillary services increasingly focuses on shifting the financial risk for the cost of these services to those who provide them. Shifting arrangements include capitation for physicians classified as "primary care" physicians; capitation arrangements that include primary and specialty services; risk shifting to medical groups, IPAs, and other physician organizations; as well as the packaging of physician and hospital services on a "full risk," "per case," or other basis. Accepting financial risk for the cost of medical and other health care services, as well as the responsibility for managing the provision of services, may very well be the only remaining opportunity for providers to maximize reimbursement and maintain administrative and clinical self-direction. However, physicians must work with managed care organizations (MCOs) through negotiation of contracts and throughout the relationship to make sure: Unnecessary financial and legal risks to the MCO and physicians are eliminated. Risks that cannot be eliminated are apportioned between the MCO and physicians. All risks are managed in a coordinated fashion between the MCO and physicians.