Safeguarding patients' dignity. The revised directives discuss spiritual and professional considerations

The Catholic health ministry recognizes that caring for the spiritual nature of a person is a high priority. The rights of patients and residents in their relationship with care givers are also important. These topics are treated in Parts 2 and 3, respectively, of the Ethical and Religious Directives for Catholic Health Services. This article focuses on those directives. Directive 10 says pastoral care should be available to all persons in a Catholic healthcare facility, no matter their religious affiliation. Directives 12 to 20 are concerned with the reception of the sacraments of baptism, penance, anointing, and communion by Catholics. Directive 21 discusses the appointment of priests and deacons to the pastoral care staff. Directive 23 reminds care givers that respect for human dignity must inform all Catholic healthcare. Directives 24 and 25 discuss norms for responding to advance directives and the responsibilities of surrogates. Directives 26 to 28 are concerned with free and informed consent on the part of patients and surrogates. Directives 29 to 30 say care givers have a moral obligation to preserve a patient's anatomical and functional integrity. Directive 31 discusses the ethical limits on medical research, and Directive 33 discusses therapeutic procedures likely to harm the patient. Directive 34 says care givers must protect patients' privacy. Directive 36 discusses the care of women who have been raped, including treatment that would prevent ovulation as a result of the rape. Directive 37 says ethical consultation should be available to all Catholic facilities, usually through an ethics committee.     

Ministering to persons who face death. Practical guidance for care givers of persons making end-of-life treatment decisions

It is time care givers learn how to minister effectively and sensitively to those making end-of-life treatment decisions. To do so, care givers need to be aware of the various meanings death and dying hold. Culture, religion, past experiences with death and dying, and current situations can all influence the way persons perceive death and dying. Sensitivity to who the patient and family are, to how they perceive the disease or illness, and to how this perception influences their ability to achieve their life goals is a critical care-giving skill. Sensitivity, however, need not result in value neutrality or tolerance. Care givers should not be mindless executors of patient or family demands. Care givers must learn to talk honestly with patients and families about how a particular disease is most likely to progress and about the types of decisions they are likely to need to make. And then care givers need to present options, remaining sensitive to the patients' beliefs, values, and interests. Persons who care for the dying will face three types of patients, who will require different types of responses. The three types are patients who welcome death, patients who accept death, and patients who fight death. For all types of patients, care givers must keep the care patient centered and responsive to patients' priorities; facilitate informed decision making; promote communication among the patient, family, and healthcare team; support autonomous decision making; mediate conflicts; and offer spiritual counseling.     

Informed consent from cognitively impaired persons participating in research trials: comparative law observations

This article addresses the ethical requirements to be considered when conducting clinical trials involving human subjects whose mental condition limits their ability to understand the information and to express fully autonomous and informed consent. It does not address other categories of vulnerable persons, such as children, or advanced directives concerning end-of-life care. There are many ethical issues entailed in clinical trials involving subjects with mental disabilities: how to obtain informed consent, balancing risks and benefits, balancing individual benefits with collective scientific and social interests, legal representation and many more. This article focuses on the issues surrounding the concept of minimal risk and the relationship between informed consent and risk. These issues are addressed with particular emphasis on the regulations adopted by the European Union and the federal government of the United States of America. The conclusion proposes a list of working criteria.     

Ethical issues and the electronic health record

Ethical issues related to electronic health records (EHRs) confront health personnel. Electronic health records create conflict among several ethical principals. Electronic health records may represent beneficence because they are alleged to increase access to health care, improve the quality of care and health, and decrease costs. Research, however, has not consistently demonstrated access for disadvantaged persons, the accuracy of EHRs, their positive effects on productivity, nor decreased costs. Should beneficence be universally acknowledged, conflicts exist with other ethical principles. Autonomy is jeopardized when patients' health data are shared or linked without the patients' knowledge. Fidelity is breached by the exposure of thousands of patients' health data through mistakes or theft. Lack of confidence in the security of health data may induce patients to conceal sensitive information. As a consequence, their treatment may be compromised. Justice is breached when persons, because of their socioeconomic class or age, do not have equal access to health information resources and public health services. Health personnel, leaders, and policy makers should discuss the ethical implications of EHRs before the occurrence of conflicts among the ethical principles. Recommendations to guide health personnel, leaders, and policy makers are provided.     

Wilderness Therapy: Ethical Considerations for Mental Health Professionals

Wilderness therapy is a growing treatment modality for adolescents presenting with a variety of clinical concerns, and wilderness therapy clinicians and referring mental health professionals must carefully consider the ethical issues that are unique to this modality. Following an overview of wilderness therapy as a mental health treatment, relevant ethical issues for mental health professionals are described and discussed, including the distinction between therapy and therapeutic experiences, the use of efficacious treatment, consent and confidentiality, therapeutic boundaries, a continuum of care and family involvement, and aftercare. A thorough reflection of the unique ethical issues faced by wilderness therapists is not only necessary, but will also assist in moving the field of wilderness therapy and outdoor behavioral healthcare forward in its establishment as both a recognizable and ethical treatment option.     

Changing the way we care for the dying

Systemic healthcare reform provides an opportunity to make care of the dying more humane, less technology based. Dying persons should neither be ignored when technologies prove futile nor be handed over too hastily to professional and institutional care. Perhaps dying should be reclaimed and, where possible, taken back into the home, family, and community. Caring appropriately for dying persons is made difficult today by a number of factors. Americans' death-denying attitudes drive much of what healthcare professionals do in both acute and long-term care settings. Frequently, the emphasis is on curative and rescue interventions to the neglect of all else. Finally, the U.S. family has become increasingly unable or unwilling to care for a dying family member at home. The potential for significant reform of the healthcare system may change the way care is rendered to dying persons. Catholic healthcare providers should be leaders in reshaping the way dying persons are cared for. First, ethics committees should formulate, promulgate, and implement policies delineating the appropriate use of life-sustaining interventions. Second, long-term care givers need to overcome the troubling tendency to transfer dying persons to acute care facilities when death is imminent. Third, hospice services should be available and their use encouraged. Finally, representatives from Catholic healthcare should work with parishes to encourage the faith community to share in the responsibility of providing home care for dying persons.     

Toward a just healthcare system

The U.S. healthcare delivery system is a patchwork nonsystem full of inequities, whose symptoms include the prolongation of the dying process, a lack of preventive care, and patient dumping. What can be done to make this nation's healthcare delivery system more just? The U.S. healthcare system should be modeled on the same underlying assumptions and justice-related values as the U.S. education system, a system based on need. Americans would find such a model psychologically acceptable because they are familiar with it, even though it is not perfect. Because they have the facilities and resources at their disposal, care givers must experience solidarity with all those who need care. The unity and solidarity of all creation is an explicitly Christian theme and is an appropriate value to emphasize with regard to compassionate healthcare. To establish a fairer healthcare delivery system, providers must consider their own Christian responsibilities and those of the Church, as well as the civic responsibilities of the government. If Catholic healthcare professionals do their part to change the status quo, Americans will be able to enjoy a fair system of healthcare delivery based on need, not on ability to pay.     

Care of the dying: a Catholic perspective. Part II: Social and political context--Catholic providers must exemplify a caring community. Catholic Health Association

Fears of abandonment and isolation in an institution have increased the public demand for euthanasia and assisted suicide. To quell this movement, Catholic healthcare providers must provide a caring community where patients and care givers enable each other to confront the fear of death and find support in living with human limitation. To begin to address the social and political dimensions of issues about the end of life, Catholic healthcare providers must use clear and consistent definitions of the terms used to describe these issues, such as death with dignity, right to die, euthanasia, allowing to die, and assisted suicide. By acknowledging the influence of the media in forming attitudes and opinions, healthcare institutions can seize opportunities for public education on fundamental human and religious values. The first effort has to be directed toward educating members of the media. The Catholic Church supports the concept of advance directives, which provide an opportunity for people to express their values and the ways they would expect those values to be honored in decisions about medical treatment. Courts' role in resolving decisions about treatment should be limited. Patient self-determination is best exercised when a patient (or surrogate), in consultation with a physician, decides what is best. Catholic healthcare institutions should advocate for legislation that fosters an appropriate balance between protecting a patient's right to self-determination and the state's interests to protect life. At the same time, institutions' advocacy efforts should demand sufficient resources for holistic care for the dying.     

Care of the dying: a Catholic perspective. Part III: Clinical context--good palliative care eases the dying process. Catholic Health Association

In the midst of a push for legalized euthanasia and assisted suicide in the United States, the Catholic healing tradition should provide good palliative care and support for dying patients. Catholic healthcare institutions can have a counterinfluence on the euthanasia movement if they strive to relieve all forms of pain-physical, psychological, social, and spiritual. Care givers must adapt their pain management methods to diverse groups of patients and their needs. Comprehensive pain management includes not only specialized clinical programs to control physical pain, but also counseling and human support to minimize psychological pain, community support groups to counter social pain, and pastoral care resources to address spiritual pain. Truthful communication lies at the heart of the therapeutic relationship. Healthcare institutions can likewise organize themselves internally to offer optimal support programs for those who are dying, their families, and their care givers. Necessary ingredients for a comprehensive approach include integrated treatment plans, hospitable environments, policies on advance directives and collaborative decision making, ethics committees that are well versed in end-of-life issues, education programs, and a hospice philosophy of care.     

Seeing to one's self. Those who care for persons with AIDS must also preserve their own well-being

Those who care for persons with AIDS face a number of special issues. They must understand the complex clinical course of the disease, be ready to cope with its devastating effects on patients, know how to address social prejudices against persons with AIDS, and be prepared to deal with the stresses of providing care under difficult circumstances. To be effective, care givers must know how to take care of themselves. Having a philosophy of care is one key component of self-care because it gives care givers a clear sense of direction and helps them enjoy a greater sense of well-being and personal satisfaction. Creating a motivating environment, taking responsibility for the challenges and stresses of the job, building a supportive team, understanding the AIDS experience, and confronting the effects of grief are also important components in the self-care of the AIDS care giver.     

Easing the burden of stress. A stress management program can help eldercare professionals cope

Healthcare professionals in general, and those who care for the elderly in particular, must cope with a number of stressors in the working environment. Moreover, because care givers tend to put others' needs before their own, they often place an added burden of stress on themselves. Eldercare professionals must often forego the reward of finding a cure for their patients. In addition, the persons they care for can sometimes become overly dependent, depressed, unappreciative, self-centered, and demanding. The daily effort to deflect or diffuse this negative energy can take its toll on care givers, leading to coping deficiencies that themselves increase workplace tension and stress. Not only individuals, but entire departments can develop dysfunctional reactions to stress. To break this vicious cycle and improve workplace morale, facilities can implement stress management programs. As part of such a program, supervisors and managers identify stressors in the environment and suggest ways to alleviate or eliminate their effects. Once morale improves, coordinators should shift the program's focus to maintaining employee morale.     

How to avoid flying blind. To truly improve U.S. healthcare, leaders must consider seven moral values

To genuinely improve U.S. healthcare, we must base it on seven moral values familiar to Americans: Preserving individual dignity. Patients have a right to information about their medical condition and a right to participate in decisions about treatment. Society should make a basic package of healthcare available to all who need it. Caring for patients' welfare. As providers are obliged to have compassion for patients' suffering, they should also put patients' interests above their own and avoid conflicts of interest. Protecting the least well-off. Many who are poor, less educated, or members of racial or ethnic minorities bear disproportionate burdens of morbidity and mortality. They should receive care that compensates for those disadvantages. Seeking the common good. Our society has a strong disposition toward excessive individualism. We need greater emphasis on public health and preventive measures, as well as more opportunities for the public to help shape the healthcare system. Containing the healthcare costs. Waste is offensive both economically and morally. We can contain costs only by grappling explicitly with the need for healthcare rationing, which should be applied according to ethical criteria. Retaining a sense of responsibility. Society can help renew a sense of responsibility b anchoring it in the concept of subsidiarity, according to which the best government is the least government necessary to perform its appropriate tasks. Establishing high standards of quality. Providers should pursue excellence as measured by improved medical outcomes, uniform use of appropriate procedures, and increased consumer satisfaction. Quality-of-life judgments can be useful in making healthcare decisions, especially for persons who are dying.     

Changing the culture of dying. A new awakening of spirituality in America heightens sensitivity to needs of dying persons

Americans increasingly believe there are material solutions to all problems. Though we once accepted death as a part of life, we now think that--with enough technology--death can be controlled and postponed. Throughout this century, we have moved the dying process from the home to institutional settings. But institutions have a tendency to push all care to its logical end, which leads to alienation, fragmentation, and diminishment. Alienation is the result of the isolation and regimentation found in acute and skilled nursing care facilities. When care givers are indifferent to patients' pain, or do not know how to control it, they further impair the ability of dying persons to interact with others. Care for the dying person, "system by system, organ by organ," as is typical in institutional settings, fragments the dying process into a series of medical events. And, finally, institutionalized care often results in a diminishment of respect by care givers, who may come to view the dying person more as an object of academic interest than as a human whose spiritual needs may transcend physical ones. Such behavior has begun to show us the human costs of denying death and is contributing to a reawakening of spirituality in this country. The devastating effects of alienation, fragmentation, and diminishment can be ameliorated by a heightened sensitivity to the dying person's spiritual needs. With the proper supports, the dying process can be relocated from institutions to the home. Specialized training can educate healthcare professionals about palliative care and human needs at the end of life. We can rehumanize dying persons by first rehumanizing their care givers, specifically addressing the issues of stress and burnout on the job. Ultimately, the way we give care at the end of life reflects broader issues in U.S. culture. Only when communitarian values replace individualistic ones will resources be reallocated in a manner that best serves the most people. Only then will physicians, nurses, and other care givers receive rewards for supporting the dying person when tests and treatment are no longer needed.     

Three factors critical for end-of-life care

Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients.     

Introduction: <Emphasis Type="Italic">HEC Forum</Emphasis> Special Issue on Privacy and Commodification

The papers in this special thematic issue of HEC Forum critically and carefully explore key issues at the intersection of patient privacy and commodification. For example, should hospitals be required to secure a person’s consent to any possible uses to which his discarded body parts might be put after his treatment or should it only be concerned with securing his informed consent to his treatment? Should a hospital be required to raise the possibility of the commodification of such (patient-discarded) body parts, or should it only be required to address this issue if the patient asks about it? Should persons be paid to engage in medical research, or should they only be compensated for their time, on the grounds, perhaps, that such payment would be coercive or exploitative, for it might move some persons to agree to participate in research who otherwise would not have done? This number of HEC Forum illustrates the widespread implications of these issues upon which healthcare ethics committees are called to deliberate.     

Long-term care survey reveals challenges. Facilities grapple with five broad issues, including changes in leadership and AIDS

The Catholic Health Association's 1992 survey of Catholic long-term care (LTC) facilities identified five broad issues LTC facilities face in the 1990s: leadership, system affiliation, community programs, resident issues, and care of persons with AIDS. The transition to lay leadership presents new challenges to the relationship between LTC facilities and their sponsors. Despite the dominance of religious sponsors, an increasing number of laypersons are serving as healthcare administrators both in long-term and acute care. Thirty percent of respondents reported being affiliated with a multi-institutional system. This percentage has changed little in the past few years, although the number of facilities that are system members continues to increase at the fastest rate of any type of LTC facility. Only 27 percent of survey respondents said they provide educational or informational programs for persons in their communities. Thirty-nine percent of system-affiliated LTC facilities reported offering such programs. One encouraging finding shows that 80 percent of facilities have written policies for living wills, 64 percent for designated proxy, and 86 percent for durable power of attorney for healthcare. LTC providers are struggling to determine their role in caring for persons with HIV and AIDS. Only 3.6 percent of respondents care for residents with AIDS. A major problem LTC administrators face is a fear of potential infection of staff or residents.     

Pastoral care personnel have prophetic role

Pastoral care ministers must look to the prophet's role in the Old and New Testaments to establish their own prophetic mission in health care facilities. After evaluating whether their own department acts justly, competently, and compassionately, pastoral care givers must hold themselves accountable to the signs of authentic prophecy: being motivated by love, being critical to promote constructive change, and being willing to confront others' resistance. Then the pastoral care team can begin collaborating with peers to provide a more healing environment for all staff and patients. This can be done by being available to help staff with problems, influencing policymaking, and using ministerial skills when giving sacramental care to patients. Pastoral care persons can link the facility to the outside community by finding ways to reach the needy and to address residents' unmet health needs. Eventually the pastoral care staff and their peers can work toward an active response to social justice. The challenge of being prophets requires pastoral care personnel to confront problems courageously and take advocacy positions while always showing compassion.     

Collaboration Toward Service Excellence: A Union-Management and Empowered Employee Partnership

End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.     

Hospital executive leadership: a critical component for improving care at the end of life

End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.     

Factors associated with patterns of plural healthcare utilization among patients taking antiretroviral therapy in rural and urban South Africa: a crosssectional study

ABSTRACT: BACKGROUND: In low-resource settings, patients' use of multiple healthcare sources may complicate chronic care and clinical outcomes as antiretroviral therapy (ART) continues to expand. However, little is known regarding patterns, drivers and consequences of using multiple healthcare sources. We therefore investigated factors associated with patterns of plural healthcare usage among patients taking ART in diverse South African settings. METHODS: A cross-sectional study of patients taking ART was conducted in two rural and two urban sub-districts, involving 13 accredited facilities and 1266 participants selected through systematic random sampling. Structured questionnaires were used in interviews, and participant's clinic records were reviewed. Data collected included household assets, healthcare access dimensions (availability, affordability and acceptability), healthcare utilization and pluralism, and laboratory-based outcomes. Multiple logistic regression models were fitted to identify predictors of healthcare pluralism and associations with treatment outcomes. Prior ethical approval and informed consent were obtained. RESULTS: Nineteen percent of respondents reported use of additional healthcare providers over and above their regular ART visits in the prior month. A further 15% of respondents reported additional expenditure on self-care (e.g. special foods). Access to health insurance (Adjusted odds ratio [aOR] 6.15) and disability grants (aOR 1.35) increased plural healthcare use. However, plural healthcare users were more likely to borrow money to finance healthcare (aOR 2.68), and incur catastrophic levels of healthcare expenditure (27%) than non-plural users (7%). Quality of care factors, such as perceived disrespect by staff (aOR 2.07) and lack of privacy (aOR 1.50) increased plural healthcare utilization. Plural healthcare utilization was associated with rural residence (aOR 1.97). Healthcare pluralism was not associated with missed visits or biological outcomes. CONCLUSION: Increased plural healthcare utilization, inequitably distributed between rural and urban areas, is largely a function of higher socioeconomic status, better ability to finance healthcare and factors related to poor quality of care in ART clinics. Plural healthcare utilization may be an indication of patients' dissatisfaction with perceived quality of ART care provided. Healthcare expenditure of a catastrophic nature remained a persistent complication. Plural healthcare utilization did not appear to influence clinical outcomes. However, there were potential negative impacts on the livelihoods of patients and their households.