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.     

Compliance with patients' end-of-life wishes by nursing homes in New York City with conscience policies

Nursing home patients have a constitutional right to refuse treatment. The Patient Self-Determination Act confirmed that right. State laws address the obligations of health care providers and facilities to honor that right. The New York State law is more specific than those of many other states. It allows exemptions for "reasons of conscience" and imposes a number of requirements on nursing homes claiming such an exemption, including the transfer of a patient to a home that will honor an end-of-life wish. This study, conducted by FRIA, investigated the refusal of some nursing homes in New York City to carry out patients' end-of-life wishes because of conscience-based objections. The study also investigated the willingness of homes which did not have such policies to accept patients transferring from a home with a policy so that the patient's end-of-life wishes would be honored. Implications for administrators, policy makers, and regulators are discussed.     

Medical decision-making around the time of death of cognitively impaired nursing home residents: a pilot study

The purpose of this article is to describe the end-of-life process in the nursing home for three groups of cognitively-impaired nursing home residents: those who died with a medical decision-making process prior to death; those who died without such a decision-making process; and those who had a status-change event and a medical decision-making process, and did not die prior to data collection. Residents had experienced a medical status-change event within the 24 hours prior to data collection, and were unable to make their own decisions due to cognitive impairment. Data on the decision-making process during the event, including the type of event, the considerations used in making the decisions, and who was involved in making these decisions were collected from the residents' charts and through interviews with their physicians or nurse practitioners. When there was no decision-making process immediately prior to death, a decision-making process was usually reported to have occurred previously, with most decisions calling either for comfort care or limitation of care. When comparing those events leading to death with other status-change events, those who died were more likely to have suffered from troubled breathing than those who remained alive. Hospitalization was used only among those who survived, whereas diagnostic tests and comfort care were used more often with those who died. Those who died had more treatments considered and chosen than did those who remained alive. For half of those who died, physicians felt that they would have preferred less treatment for themselves if they were in the place of the decedents. The results represent preliminary data concerning decision-making processes surrounding death of the cognitively-impaired in the nursing home. Additional research is needed to elucidate the trends uncovered in this study.     

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.     

To Leave an Area After Disaster: How Evacuees from the WTC Buildings Left the WTC Area Following the Attacks

How people leave a devastated area after a disaster is critical to understanding their ability to cope with risks they face while evacuating. Knowledge of their needs for communications about these risks is particularly crucial in planning for emergency responses. A convenience sample of 1,444 persons who survived the World Trade Center (WTC) attacks on September 11, 2001 were surveyed to ascertain their initial and ultimate destinations once they had left the buildings, how they arrived there, the role of types of obstacles they encountered, and the need for information and the seeking of other people as potential factors in influencing the process of leaving immediately. This survey was part of a larger, original survey. Results showed differences in how people traveled by mode to initial and ultimate destinations, how immediately they left the area, and factors associated with when they left. How they traveled and when they left were associated with where people lived, their tendency in times of stress to seek out other people including who they knew in the immediate area (e.g., co‐workers or friends), the physical conditions surrounding them, and the importance to some of waiting for more information. Many people indicated they did not leave immediately because they had no information about where to go or what services would be available to them. Perceptions and communications about risks they were facing were reflected in the choices they considered in how and when to leave the area. These findings have numerous ramifications for understanding and guiding personal behavior in catastrophic situations.     

False expectations? Expectations vs. probabilities for dying

It is widely recognized that the code of the physician has undergone dramatic changes in the last century--changes which have serious implications for the patient-physician relationship. This is an ethnographic study examining how certain changes in the role and abilities of biomedical physicians have affected patient attitudes and expectations about end-of-life care. In-home interviews were conducted with eighteen persons age fifty-five and older, including a sample of Hemlock Society members. Results indicate a broad spectrum of end-of-life concerns including capacity, autonomy, pain, and burden to loved ones. Most participants reported a reluctance to begin a discussion of death or future deteriorating capacity with their physicians. Instead, when conversations about death were reported, they had been largely limited to the scenarios of catastrophic illness (e.g., hospitalization, ventilator, etc.) and the Living Will. While this discussion does not overlook the utility of the Living Will, it proposes the reliance on this document for preparing patients for end-of-life care is inadequate.     

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.     

Deciding what's right: The role of external sanctions and embarrassment in shaping moral judgments in the workplace

We assert that previous research has overlooked the pervasive ambiguity in ethical situations in organizations, as well as how people pierce through this ambiguity to realize new distinctions between right and wrong. Focusing on well-intentioned individuals who unknowingly transgress, we present a theory of how they come to recalibrate their moral judgments. We begin by discussing the composition and nature of a moral judgment. Building on this discussion, we then consider how external sanctions can be used to shift moral judgments. Finally, we posit that internal emotional responses to sanctions (namely embarrassment) will facilitate this shift by triggering a sense of moral deficiency. More specifically, we assert that embarrassment will focus the transgressor's attention on what went wrong. This reflection provides an opportunity for the recalibration of the initial moral judgment. We conclude with a discussion of the implications of our theory.     

Planning end-of-life care for patients with dementia: roles of families and health professionals

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in 'normalizing' the discussion of death.     

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.     

Caring for profit: Alienation and work stress in nursing assistants in Canada

Personal care work in proprietary nursing homes was contrasted with similar work in non-profit long-term care facilities. One quarter of Manitoba long-stay beds are operated by proprietary (profit-making) institutions. In both types of home, the nursing assistants were younger women with children; essential wage earners for their families. Wages were low, but nursing assistants said they worked because they liked taking care of elderly people. Nursing home residents have cognitive and mobility impairments and need help with activities of daily living. The proportion of cognitively-impaired residents is higher in profit-making homes, and probably contributed to job pressure and workload, which were taken as markers of potential alienation experienced by these workers.     

Health care futures, Part 1. The emergence of the new health care consumer. Panel discussion

In Part 1 of this second annual panel discussion, six experts examine the new health care consumer. The whole concept of the patient as consumer still makes people uneasy when it's applied to health care. Whether you prefer consumer, customer, purchaser, end-user, ultimate buyer, or beneficiary, one thing's for sure: Many of us are as different from the bygone patient as an HMO is from the general practitioner who made house calls. One of the reasons for many Americans' new interest, knowledge, attitudes, and expectations about health and health care is the Internet, the second topic in this discussion. In Part 2, physician executives from the three leading physician practice management companies (PPMCs) join Jeff Goldsmith, Barbara LeTourneau, and Uwe Reinhardt for a spirited exchange about this burgeoning new industry in the American health care sector. They will tackle questions such as: Are PPMCs delivering what they promise? What will separate successful PPMCs from the rest? Can PPMCs meet Wall Street's earnings expectations and also help physicians deliver better care? When PPMCs win, who loses? And, what roles will physician executives play in PPMCs?     

The role of organizational ethics committees

Health care services are increasingly provided in an atmosphere that is fractured by conflicting ethical concerns. This trend had been most noticeable in institutional settings. In response, hospitals have for many years had ethics committees. Their purpose has been to guide providers, patients, and families when decisions with ethical implications have to be made. The shift in focus within the health care delivery system away from hospitals and more to managed care systems and to domination of decision making by primary care providers suggests that expansion of the ethics committee concept may be advisable.     

Managed care's Achilles heel: ethical immaturity

How can physician executives determine the prevailing values in the managed care arena? What are the consequences when values statements are ignored during decision-making? These questions can be answered using a process called ethical reasoning, which is different and more productive than making moral judgments, such as "is managed care good or bad?" Failing to include ethical reasoning in executive offices and boardrooms is a form of ethical immaturity. It fuels public suspicion that managed care's goal may be maximizing profit at all costs, as opposed to seeking reasonable profit through provision of dependable and accessible health care services. One outcome of ethical reasoning is rediscovering the basic truth that running one's business on competitive rather than altruistic principles is ethical whenever greater efficiencies and economic growth enlarge the size of the pie for everyone. Reasonable self-interest is a perfectly acceptable reason to act ethically. The time has come for physician executives to develop a basic understanding of pragmatic ethics, and to appreciate the value of adding ethical reasoning to the decision-making process.     

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.     

Do honesty and high ethical standards really pay?

This question is considered from the personal side as well as the organizational side. An attempt is made to avoid purely philosophical arguments, but instead to list specific ways honesty and high ethical standards either do pay or do not pay. No absolute conclusion, “yes” or “no”, can be drawn since there are times and situations when, if not managed carefully, honesty and high ethical standards can work to the detriment of both the individual and the corporation. Sources of honesty and high ethical standards are also examined from both the individual and organizational perspectives. The best situation is when there is strong individual and corporate commitment buttressed by supporting structures that balance the needs of individuals, their companies, and society as a whole.     

Utilization management key to HMO success.

Utilization management has a long history in prepaid health programs, especially in capitated, prepaid risk programs that were the precursors of HMOs. Utilization management is commonly considered to be that set of systems and procedures used to ensure that a patient's medical needs are met at the least cost possible consistent with adequate quality. Examples of measures taken in managing utilization include avoiding unnecessary surgery, unnecessary hospitalization, excessive hospitalization, and unnecessary diagnostic and therapeutic measures, and encouraging use of less expensive means of care, such as home health care services. Also included, and of great importance, is obtaining those services at the least possible cost through favorable contracting for services.     

Hospital-physician relations: overcoming barriers to cooperation.

In the September-October 1986 issue of Physician Executive, we discussed the application of strategic business units (SBUs) to health care. SBUs are those corporate entities that market similar products to one or more target populations with similar characteristics. Examples of SBUs in health care are obstetrics, cardiology, orthopedics, etc. When the services within each SBU are linked together, they might resemble a vertically integrated health care system. In the case of obstetrics, a woman may have contact with physicians, a hospital, home care nurses, house-cleaning services, birthing teachers, and maternity clothing boutiques. Each of these are products/services within the SBU of obstetrics. Strategy development by SBU implies an external focus on the marketplace in terms of the specific mission of the SBU (clinical specialty). It also implies responding to the needs of consumers for whom the historical and present divisiveness between hospitals and physicians is immaterial and irrelevant. In this article, we will focus on ways to stabilize the relationship between hospitals and physicians within an SBU context in order to compete more successfully as a team in today's health care environment.     

Strategically integrating hospital/home care services for improved profitability

Because hospitals and home health agencies have been predominantly separate organizations, coordination of their efforts has not been optimized. However, with the recent proliferation of hospital-based home health agencies, opportunities to integrate these health care service delivery systems have increased. Bethesda Memorial Hospital, Boynton Beach, Fla., is a 362-bed not-for-profit community hospital with a Medicare-certified home health agency organized as a department of the hospital. Until recently, the home health agency was generally perceived as a separate entity whose services were distinct from hospital services. Progress toward integration of hospital and home care services was given impetus through collaboration of the home health agency administrator and a newly appointed director of medical affairs who was given the responsibility as medical director of the home health agency. A prime responsibility of the director of medical affairs was to reduce length of stay and hospital costs through appropriate resource management.     

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.