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.     

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.     

What parents of seriously ill children value: parent-to-parent connection and mentorship

The value of parent-to-parent support has been noted in research with parents of children who have a range of special needs and chronic medical conditions, however, less is known about the benefit of such mentorship for parents caring for seriously ill and dying children. Findings from a qualitative study with mothers of seriously ill children, including those whose children had died, provided rich and detailed information about the personal and practical resources they received from other parents. Personal recommendations to parents by parents included the value of seeking out mentorship and appreciating the small things in life, while practical suggestions encompassed encouraging parents to become informed and to advocate for their children's best interests. Mothers also identified professionals with end-of-life training as instrumental agents of support.     

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.     

Assessing adults' difficulty in coping with funerals

The death of a loved one requires many adults to make decisions about a variety of details regarding funeral arrangements. Based upon data collected from 348 adults (M age = 34.21) who had attended the funeral of a loved one within the last year, a scale consisting of 50 items regarding the difficulties each had experienced with regard to events prior to, during, and after the funeral, was developed. Cronbach's Alpha coefficient for this measure of difficulty was .96. Principal components analysis of these data indicated that difficulty in coping with funerals could be understood in light of six factors explaining 56% of the common variance among relationships between items: 1) protocol/mechanics of the funeral; 2) general personal and interpersonal difficulties related to the death/funeral; 3) trust in the funeral industry; 4) concerns regarding the cemetery; 5) issues pertaining to grief; and 6) post-funeral personal responsibilities. With regard to both overall difficulty and the above six factors, older adults experienced fewer difficulties, as did those who more actively participated in funeral rituals. In contrast, those who reported more personal and bereavement-related distress experienced more difficulties. Findings of the current study have value both in identifying persons for whom funerals may undermine bereavement adjustment and in identifying appropriate intervention and aftercare services for such individuals.     

Exploring death anxiety among elderly people: a literature review and empirical investigation

Given the growing number of elderly persons in society and concerns about their health and well-being, the aim was to review the available literature on their death anxiety, and to explore features of this experience among a small sample of older men and women in care facilities. In both the review and empirical parts of this study, components and correlates of death anxiety were investigated. The review revealed limited research focus on death anxiety among the elderly, particularly among those in institutions, but suggested both components and correlates for inclusion in our empirical study. Results showed that, among our elderly participants in an assisted living facility (N = 49; age range: 60-96 years), there were higher levels of fear for others and of the dying process than for fear of the unknown. Notably, among the correlates identified, fear for significant others was associated with poor physical health; fear of the dying process was related to low self-esteem, little purpose in life, and poor mental well-being. Gender differences in death anxiety were found: women showed greater fear for the death of loved ones and for the consequences of their own death on these loved ones, than did men. These patterns are discussed in the light of concerns about the welfare of elderly persons; scientific implications are also considered.     

Are we making progress? Not in haematology!

It will be shown, through the presentation of recent research findings, that haematology is a neglected area in terms of sensitive care of the dying. The Australian evidence indicates that scant progress has been made in relation to even the most basic palliative care practices such as sensitive, honest information giving or appropriate referral to the palliative system. Rather, the data show that during terminal trajectory, patients from these diagnostic groups and their families remain trapped in processes within the high-tech, curative system that are not responsive to the needs of the dying.     

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.     

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.     

Veteran's health care: time for a change?

The Department of Veterans Affairs' mission is "to care for him who are shall have borne the battle for his widow and orphan." The Veterans Health Administration comprises 172 hospitals that are the hub of the health care delivery system. It is the largest provider of graduate medical education, and one of the major research organizations in the United States. The medical care budget exceeds $17 billion annually. Most of the persons cared for are not legally entitled to this health care based on service connected disability. The utilization of acute care hospital beds appears excessive when compared to that obtainable with managed care for Medicare or commercial insurance beneficiaries--the cost per member per month is three times higher. There may also be exploitation of the Veterans Administration hospitals by university medical schools. The Veterans Health Administration is a very expensive way to deliver care to entitled service connected veterans. Therefore, it is suggested that privatization be considered as an alternative vehicle for delivering health care.     

Reinventing a medical specialty. Using anesthesiology as a model for change

In only a decade, anesthesiology has reversed its fortunes from an underrepresented specialty in the 1980 Graduate Medical Education National Advisory Committee report to "a specialty in trouble" featured in The Wall Street Journal. This article focuses on anesthesiology and its work force dilemma as an evolving specialist model for change. What is happening to anesthesiology will not be unique--managed care competition will affect all physicians. Most specialties will have to reshape curricula and redesign education programs and academic delivery systems concentrating on fewer trainees. What are the options for coping with physicians grieving over lost dreams, such as autonomy and solo practice, while redesigning a medical specialty? The authors untangle fact from fear, mission from myth, and offer strategic thinking and solutions.     

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.     

Trustees as servant-leaders: A report and reference guide

How have the servant-leader writings of Robert Greenleaf impacted upon society during the past twenty years? What influence has Greenleaf had upon trustees and others? And, what are people sayingtoday about servant-leadership? While this paper seeks to provide a partial answer to these questions, its intent is to serve as an informative report on the ever-widening influence of the servant-as-leader idea—and as a resource guide for others who may wish to delve more deeply into the notion of trustees as servant-leaders. In 1974, Robert Greenleaf publishedTrustees as Servants, in which he expressed his own thoughts concerning the special role which trustees can and should play within an institution—but usually don't. His delineation of some of the barriers and solutions to effective trusteeship has since been read by over 400,000 people and has come to represent a core element of what is now generally called “trustee education.” The central definition of servant-leadership, as defined by Greenleaf inThe Servant as Leader, is as follows: It begins with the natural feeling that one wants to serve, to serve first. Then conscious choice brings one to aspire to lead. The difference manifests itself in the care taken by the servant—first to make sure that other people's highest priority needs are being served. The best test, and difficult to administer, is: do those served grow as persons; do they while being served, become healthier, wiser, freer, more autonomous, more likely themselves to become servants? And, what is the effect on the least privileged in society; will they benefit, or at least, not be further deprived? The past two decades have witnessed the publication of a growing number of books and articles concerning servant-leadership and its applications in a number of key areas. This now includes its uses as: a working philosophy and model in both for-profit and not-for-profit institutions; the bringing together of servant-leadership and experiential education in the related area of “service-learning”; the use of servant-leadership within community leadership programs; its use in both formal management/leadership courses and by independent consultants working directly with institutions; as a core idea for several diverse areas of personal growth and personal transformation; and as the values base for trustee education. The attached bibliographies-in-progress are intended to provide suggested readings for those who are interested in finding out more about the role of trustees as servant-leaders.     

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.     

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.     

Deathbed visions from India: a study of family observations in northern Kerala

This is an interview-based study of 104 families and their observations of the last weeks and days of a dying family member. Forty families reported "unusual experiences and behaviors" from the dying person in their last period of life. Thirty of these dying persons displayed behavior consistent with deathbed visions-interacting or speaking with deceased relatives, mostly their dead parents. There were six cases of reported premonitions of death and five possible confusional states with one patient reported to have had both a deathbed vision and confusional experiences. Socio-demographic factors such as gender, age, occupation, or cause and place of death were not found to be significant. Hindu patients appeared to be more likely than Muslim patients to report these experiences. Use of opiates (or not) did not appear to influence reports. The findings are discussed with reference to past studies of deathbed visions as well as their implications for the future pastoral care of dying people and their families.     

Graduate medical education funding crisis

Medicare, the major funding source for graduate medical education, is under intense scrutiny. Some think that Medicare should not continue to overtly pay to train graduate physicians, while others believe continued direct funding is an important social obligation. Recent policy discussions could dramatically transform the way graduate physician training is funded and teaching hospitals are paid. This is an important debate because of the strong influence Medicare has in determining the willingness of other payers to contribute to graduate medical education. Funding reductions are already threatening the viability of the U.S. teaching hospital system.     

Part-time medical director: way station or end of the line?

This article is mostly directed to physicians who are contemplating a career change into management. You may be one of those persons who is contemplating taking a part-time position and continuing part-time clinical practice to see if you might enjoy management. It is important to understand that a part time medical director is there primarily because management perceives a need for a physician's skills and license. When a physician is hired on a part-time basis, it is unlikely that management realizes the larger benefits that can accrue to the organization from the physician manager's knowledge of health care and unique approach to the problems and opportunities in the delivery of that health care. Part-time medical directors seldom have an opportunity to be exposed to real management issues and activities and are usually sequestered and limited to functions that a naive management team thinks are most appropriate to a physician's skills and temperament. Be cautious in extrapolating a part-time experience to a full-time role. Consider taking the plunge to full-time management without a part-time transition phase.     

Awareness of dying: an experience of Chinese patients with terminal cancer

Despite the effort to provide an alternate way to dying, there seems to be little effort to examine the real situation of hospice care. For example, the patients' desired outcomes are seldom addressed. It is recently that studies began to investigate the features of "good death." However, work in eastern cultures, such as Chinese, remains scarce. The purpose of this study is to gain an understanding of what it means to die a "good death" from the perspective of Chinese patients. Thirty-three Chinese hospice patients with terminal cancer were interviewed. Grounded in the analysis of qualitative data, seven elements that contribute to dying a good death emerged. Awareness of dying was identified as the foremost essential element of a good death. From the findings of this study, most respondents considered receiving a diagnosis of cancer as one of the significant points of psychological distress in the course of their illness. Half of the patients openly talked about their cancers and more than half of them discussed various issues related to death. That means, about one-third of the respondents talked about death and cancer with openness. These preliminary findings may reflect the progress of hospice work in Hong Kong. Meanwhile, 13 respondents did not mention the word "death" and 16 of them did not mention that they had cancer. They talked about their illness and future using the expressions that they preferred. It is important that health care professionals also respect people who show awareness of dying as much as those who do not present clear evidence of this awareness. Both groups of people can have a positive experience when they die.     

Quality versus variance: a plea for a different focus and terminology

Much has been written about quality assurance in medical practice over the past 15 years. Medicine suddenly found itself trying to design systems that ensured that medicine was being practiced according to standards of quality when it had neither a definition of its product nor defined standards of practice. Consequently, early quality assurance programs focused primarily on documentation of patient care. As the process matured, it evolved to generic screens, with tolerances and outliers. The theory was that the quality of medical care was enhanced by physicians who practiced within often artificially established norms and was diminished by physicians who practiced outside those same norms. It was much like saying that the quality of manufacturing a new car could be improved by reducing all systems down to one of closely standardizing, observing, and documenting how each individual assembly worker put on a lock nut and then holding each worker independently accountable for the final quality of the care. Physicians felt they were being held responsible for conforming to a rigid set of poorly designed and retrospectively applied standards. Moreover, they were held accountable for applying those standards to all practice situations. Understandably, physicians felt at the mercy of nonphysician quality assurance "detectives" in hospitals and became increasingly suspicious of nurses and administrators, who were perceived as abusing the system at the expense of the physicians. Because of these inadequacies of the earlier quality assurance programs, paranoia among physicians about the quality assurance process remains rampant today. The use of blind outcome scores and practice patterns in credentialing and the reporting of these data to databanks have reinforced the paranoia.(ABSTRACT TRUNCATED AT 250 WORDS)