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| Chapters from Ethical Dilemmas at the End of Life |
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In the opening chapter, James Werth Jr., PhD, discusses the five ethical meta-principles—nonmaleficence, beneficence, autonomy, justice, and fidelity—that frame end-of-life ethics and how they supplement and complement professional codes of ethics and the law.
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By comparing how they treat modern end-of-life ethical dilemmas, Cynthia B. Cohen, PhD, JD, shows how the world's major faiths extract specific positions from their overarching ethical principles.
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This chapter by Noel Tiano, ThD, and Elizabeth Webb Beyer, RN, MS, JD, sheds light on the different cultural and religious perspectives on nonbeneficial treatment—treatment that only prolongs life without improving the medical status. It argues for a balance between patient autonomy and other values, including beneficence, nonmaleficence, justice, compassion, care, and societal responsibility.
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Emerging medical technologies have changed the way we make end-of-life decisions. As we have more options to artificially extend life, our thinking about death has shifted. The law, also, has changed. Alan Meisel and Bruce Jennings trace this history and go on to explore how legal norms and medical practice change together.
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Using data from surveys and interviews, Bruce Jennings shows how Americans' view of what constitutes a good death—holistic, family-centered care and effective palliation—transcend cultural and religious differences. It is this model of care, the hospice model, that has become the American expectation of a meaningful end-of-life experience.
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William M. Lamers Jr., MD, investigates three important concepts in bioethics: autonomy, the right of the individual to make his or her own decisions; consent, the right to knowledge and approval of treatment; and the advanced directive, a legal document that formalizes a patient's autonomy in case he or she were to lose decision-making ability.
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Bernard Hammes, PhD, and Linda Briggs, RN, MSN, MA, offer a guide for health care workers on how to initiate and facilitate conversations about advanced care planning with their patients. The chapter gives four primary suggestions: initiate the conversation in a way that builds a good therapeutic relationship; understand the patient's values and experiences; help him or her understand specific possible care scenerios; and, assist in the selection of a surrogate decision-maker.
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Samira K. Beckwith, CEO of Hope Hospice and Palliative Care, discusses some of the more contentious end-of-life issues that families must face, including information sharing, where to keep the ailing family member, the funeral arragements, and settlement of the estate. She argues a strong case for advanced directives to minimize the chance of family conflict and then explains how hospice can help.
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Scholar Bruce Jennings discusses patient autonomy and the role of family by asking some important questions: Can we realistically expect the surrogate to simply follow the will of the patient in a rapidly changing context? Can we really expect surrogates to put aside their own values, hopes, and emotions? Finally, what is the role of the care provider in assisting the surrogate, especially when the patient has no close friends or family?
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Thomas Attig, PhD, explores the rationality of suicide and the ethics of physician-assisted suicide. He reserves labeling suicide as rational for only a few specific circumstances. He then outlines the two most important considerations for physician-assisted suicide: ethics and legality.
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Richard Fife, PhD, applies concepts such as autonomy and futility to certain concrete medical situations: withdrawing hydration, artificial nutrition, resuscitation, and palliation. He concludes that hospice ethics committees have great value and are a great complement to the team-centered hospice philosophy of care.
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Professor Craig M. Klugman discusses what makes pediatric end-of-life care ethically unique. Children lack autonomy and are therefore unable to give consent. He offers informed assent as an alternative. Under this principle, children are informed in a way consistent with their level of development, and agreement is sought for decisions made in their name.
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In this chapter, Sandra H. Johnson, JD, addresses how hospice care and long-term care facilities interact and how the changing culture of long-term care can impede effective hospice care. As long-term facilities such as nursing homes shift their focus from custodial care to rehabilitative care, they cease to see themselves as proper homes, and thus cease to see themselves as a place to die. Despite this, and despite the hindrances given to palliation by tight regulation of long-term care facilities, Johnson argues that patients have the right to die in place, even if the place is a nursing home.
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Charles A. Corr, PhD, asks how issues revolving around organ donation affect grief and its treatment. He treats three types of organ donation—those made after brain death, those made after cardiac death, and living donations—and then explains why transplant organizations should acknowledge and provide support for those coping with grief.
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End-of-life care in particular, and the entire American health care system in general, can be characterized by a polarizing distribution of excess and deprivation. Larry R. Churchill, PhD, explores this paradox and continues on by outlining how poor health care policies can confound grief and its treatment.
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