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Published: 10 December 2022
Last updated: 28 January 2023

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1

End-of-life care and pragmatic decision making: A bioethical perspective. Cambridge: Cambridge University Press, 2010.

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2

Hester, D. Micah. End-of-life care and pragmatic decision making: A bioethical perspective. Cambridge: Cambridge University Press, 2010.

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3

Kathryn, Braun, Pietsch James H, and Blanchette Patricia L, eds. Cultural issues in end-of-life decision making. Thousand Oaks, Calif: Sage Publications, 2000.

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4

Elizabeth, Chaitin, ed. Ethics and end-of-life decisions in social work practice. Chicago, Ill: Lyceum Books, 2005.

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5

Csikai, Ellen L. Ethics in end-of-life decisions in social work practice. Chicago, Ill: Lyceum Books, 2006.

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6

1938-, Hardy Mark A., ed. Psychosocial aspects of end-stage renal disease: Issues of our times. New York: Haworth Press, 1991.

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7

Caroline, Young. End of life care issues guidebook. Los Angeles, CA: UniversityofHealthCare, 2005.

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8

Florida. Agency for Health Care Administration. End of life issues: A practical planning guide. Tallahassee, FL: Florida Agency for Health Care Administration, 2002.

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9

McCarthy, Joan. End-of-life care: Ethics and law. Cork, Ireland: Cork University Press, 2011.

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10

End-of-life care: Ethics and law. Cork, Ireland: Cork University Press, 2011.

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11

J, Doka Kenneth, Jennings Bruce 1949-, and Corr Charles A, eds. Ethical dilemmas at the end of life. Washington, D.C: Hospice Foundation of America, 2005.

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12

Becker, Gary Stanley. The value of life near its end and terminal care. Cambridge, Mass: National Bureau of Economic Research, 2007.

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13

Kleespies, Phillip M. Life and death decisions: Psychological and ethical considerations in end-of-life care. Washington: American Psychological Association, 2004. http://dx.doi.org/10.1037/10661-000.

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14

Life and death decisions: Psychological and ethical considerations in end-of-life care. Washington, DC: American Psychological Association, 2004.

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15

Policy in end-of-life care: Education, ethics, practice and research. London: Quay Books, 2006.

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16

A will to live: Clear answers on end of life issues. Irving, Tex: Basilica Press, 2006.

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17

When life nears death: A medical ethics guide to end-of-life care. Charleston, SC]: [CreateSpace], 2015.

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18

The least worst death: Essays in bioethics on the end of life. New York: Oxford University Press, 1994.

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19

Christner, Anne M. End-of-life decisions: Facing the challenges of medical and ethical choices. Providence, RI: Manisses Communications Group, 1995.

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20

Colleen, Counsell, ed. End of life issues. Philadelphia: W.B. Saunders, 2002.

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21

Fleischman, Alan R. Ethical Issues at the End of Life. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199354474.003.0006.

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This chapter deals with the difficult ethical issues associated with children who are dying. A recurring theme in the chapter is the role that children can play in planning their own care. The concept of brain death is examined and it is contrasted with cardiac death. The practice of organ donation after cardiac death is described and its ethical justification is questioned. . Several other controversial ethical issues are analyzed, including the distinction between withholding and withdrawing of treatment, withdrawing medically provided hydration and nutrition from infants who are not in the process of dying, whether pain management at the end of life hastens death and is therefore not permitted, and whether children should die in the hospital or at home. The chapter concludes with a description of how to support families after the death of a child.
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22

Markus, Hugh, Anthony Pereira, and Geoffrey Cloud. Ethical issues in stroke care. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780198737889.003.0017.

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The chapter on ethical issues in stroke care sets out an ethical framework incorporating patient autonomy, beneficence, non-maleficence, and justice to inform patient-centred stroke care. It covers a broad range of legal information as relevant to stroke care in the United Kingdom such as the European Law of Human Rights, The Human Rights Act 1998, The Mental Capacity Act (MCA) 2007, and Deprivation of Liberty safeguards (DoLS). It covers widely applicable guidance around consent, cardiopulmonary resuscitation, artificial nutrition and hydration, and withholding treatment and withdrawing medical treatment. A section is included to review the various types of Prolonged Disorders of Consciousness which are rare but devastating complication of stroke. An approach to end of life or palliative care in the stroke patient is also discussed.
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23

Benson, Carolyn, and G. Bryan Young. Ethical and end-of-life issues after cardiac arrest. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199600830.003.0067.

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Many survivors of cardiac arrest, especially out-of-hospital cardiac arrest, suffer varying degrees of anoxic-ischaemic brain injury. Accurate neurological prognostication to determine which patients will have poor neurological outcome is important to guide appropriate medical care and advise surrogate decision makers. Accurate prognostication generally requires the presence of two or more negative prognostic indicators, especially following treatment with therapeutic hypothermia. Medical care should be directed at achieving survival that the patient would consider acceptable. Poor quality survival is generally defined as severe disability with full dependency, minimally-conscious, or vegetative state. Discussions regarding prognosis and management of patients who remain unresponsive after resuscitation from cardiac arrest should be conducted in a professional manner and show respect for the individuals involved, their culture, and religion.
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24

Macauley, Robert C. Specific Ethical Issues at the End of Life (DRAFT). Edited by Robert C. Macauley. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199313945.003.0004.

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A specific application of advance care planning has to do with determining the “code status” of a patient. Many of the terms used to document this status are misunderstood or carry unfortunate connotations, such as “DNR.” It is more appropriate to refer to a “Do Not Attempt Resuscitation” (DNAR), to emphasize the uncertainty as to whether attempted resuscitation will be successful. Code status is especially relevant to patients who “want everything,” which may include high-burden and low-benefit procedures. Time-limited trials and Do Not Escalate Treatment orders may be considered in those situations. There may also be situations when a patient’s refusal should be overridden, when the patient’s decision-making capacity is compromised.
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25

Gordon, Bruce, Daniel Farb, Cyndie Koopsen, and Caroline. End of Life Care Issues Ethical Issues: A Guide for Healthcare Providers, Patients, and Families on the Care of the Dying [AUDIOBOOK] [CD] (End of Life Care Issues (University of Health Care)). UniversityOfHealthCare, 2006.

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26

Casarett, David. Ethical issues in palliative care research. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0196.

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Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional study designs. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.
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27

Hester, D. Micah. End-Of-Life Care and Pragmatic Decision Making: A Bioethical Perspective. Cambridge University Press, 2009.

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28

Hester, D. Micah. End-of-Life Care and Pragmatic Decision Making: A Bioethical Perspective. Cambridge University Press, 2010.

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29

Hester, D. Micah. End-Of-Life Care and Pragmatic Decision Making: A Bioethical Perspective. Cambridge University Press, 2009.

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30

Hester, D. Micah. End-Of-Life Care and Pragmatic Decision Making: A Bioethical Perspective. Cambridge University Press, 2012.

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31

Searight, H. Russell. Ethical Challenges in Multi-Cultural Patient Care: Cross Cultural Issues at the End of Life. Springer, 2019.

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32

Blanchette, Patricia L., Kathryn L. Braun, and James H. Pietsch. Cultural Issues in End-Of-Life Decision Making. SAGE Publications, Incorporated, 2012.

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33

Cultural Issues in End-of-Life Decision Making. Sage Publications, Inc, 1999.

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34

(Editor), Kathryn L. Braun, James H. Pietsch (Editor), and Patricia L. Blanchette (Editor), eds. Cultural Issues in End-of-Life Decision Making. Sage Publications, Inc, 1999.

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35

Blanchette, Patricia L., Kathryn L. Braun, and James H. Pietsch. Cultural Issues in End-Of-Life Decision Making. SAGE Publications, Incorporated, 1999.

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36

Geppert, Cynthia, Mary Ann Cohen, and Rebecca Weintraub Brendel. End-Of-Life Issues, Ethical Issues, Advance Directives, and Surrogate Decision-Making in The Care of Persons With HIV. Edited by Mary Ann Cohen, Jack M. Gorman, Jeffrey M. Jacobson, Paul Volberding, and Scott Letendre. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199392742.003.0049.

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HIV and AIDS, perhaps more than any other illness during any other time, contributed to the end of a “collusion of silence” and parentalism that characterized medicine prior to the era of civil rights and patient rights. The bioethical aspects of both healthcare delivery and care at the end of life changed dramatically during the beginning of the AIDS epidemic when young persons and their dedicated teams of caregivers were faced with a new infectious illness associated with both sexual transmission and intravenous drug use. This chapter delineates the ethical aspects of HIV and exceptionalism, screening, routine testing, informed consent, advance care planning through advance directives, confidentiality, criminalization, the duty to warn, and pre- and post-exposure prophylaxis (PrEP and PEP).
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37

L, Werth James, and Blevins Dean, eds. Decision making near the end of life: Issues, development, and future directions. New York: Brunner-Routledge, 2008.

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38

Decision-making near the end of life: Issues, development, and future directions. New York: Brunner-Routledge, 2008.

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39

Smith, Alexander K., and Paul Glare. Ethical Issues in Prognosis and Prognostication. Edited by Stuart J. Youngner and Robert M. Arnold. Oxford University Press, 2014. http://dx.doi.org/10.1093/oxfordhb/9780199974412.013.9.

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This article examines ethical issues in disease prognosis and prognostication in palliative care from a clinical perspective. After providing a brief historical overview on diagnosis, treatment or therapy, and prognosis, it describes the decline in the importance of prognosis in medicine that has occurred over time. It then discusses the role of prognosis in palliative, hospice, and end-of-life care, focusing on the ethics underlying prognosis, as well as the need to estimate prognosis as accurately as possible despite the uncertainty. The article concludes by highlighting the importance of communicating prognosis with patients and discussing different ways prognostic information should be used.
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40

Ethics in End-Of-Life Decisions in Social Work Practice. Oxford University Press, 2006.

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41

L, Friedman Sandra, Helm David T, and American Association on Intellectual and Developmental Disabilities., eds. End-of-life care for children and adults with intellectual and developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities, 2010.

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42

Muth, Annemarie. Death and Dying Sourcebook: Basic Consumer Health Information for the Layperson About End-Of-Life Care and Related Ethical and Legal Issues (Health Reference Series). Omnigraphics, 1999.

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43

Vincent, Jean-Louis. Ethical issues in cardiac arrest and acute cardiac care: a European perspective. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199687039.003.0013_update_002.

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Acute cardiac syndromes are common and responsible for considerable mortality and morbidity. Decision making in such patients can be difficult clinically but can also be complex and challenging from an ethical perspective. This chapter reviews some of the ethical problems, including organ donation and withholding/withdrawing, that can occur in the acutely ill adult cardiac patient, starting with a brief look at the ethical principles that should guide our decision making: beneficence, non-maleficence, autonomy, and distributive justice. The role of advance directives and considerations related to family presence during cardiopulmonary resuscitation will also be discussed. With the increasing incidence and prevalence of coronary artery disease worldwide, the number of patients with cardiac arrest and requiring acute cardiac care is going to increase, and doctors will increasingly be faced with difficult ethical decisions associated with these patients. Open discussion and debate about these issues and good communication among patients, family members, and members of the health care team are essential to ensure that all patients receive the best possible end-of-life care.
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44

Vincent, Jean-Louis. Ethical issues in cardiac arrest and acute cardiac care: a European perspective. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199687039.003.0013_update_003.

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Acute cardiac syndromes are common and responsible for considerable mortality and morbidity. Decision making in such patients can be difficult clinically but can also be complex and challenging from an ethical perspective. This chapter reviews some of the ethical problems, including organ donation and withholding/withdrawing, that can occur in the acutely ill adult cardiac patient, starting with a brief look at the ethical principles that should guide our decision making: beneficence, non-maleficence, autonomy, and distributive justice. The role of advance directives and considerations related to family presence during cardiopulmonary resuscitation will also be discussed. With the increasing incidence and prevalence of coronary artery disease worldwide, the number of patients with cardiac arrest and requiring acute cardiac care is going to increase, and doctors will increasingly be faced with difficult ethical decisions associated with these patients. Open discussion and debate about these issues and good communication among patients, family members, and members of the health care team are essential to ensure that all patients receive the best possible end-of-life care.
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45

Shannon, Joyce Brennfleck. Death And Dying Sourcebook: Basic Consumer Health Information About End-of-Life Care And Related Perspectives And Ethical Issues (Health Reference Series). 2nd ed. Omnigraphics, 2006.

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46

Samanta, Jo, and Ash Samanta. 9. The end of life. Oxford University Press, 2018. http://dx.doi.org/10.1093/he/9780198815204.003.0009.

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Each Concentrate revision guide is packed with essential information, key cases, revision tips, exam Q&As, and more. Concentrates show you what to expect in a law exam, what examiners are looking for, and how to achieve extra marks. This chapter deals with key legal and ethical issues surrounding end-of-life decisions, with particular reference to physician-assisted death such as euthanasia. Suicide and assisted suicide, administration of pain relief, and futility are considered. Relevant legislation such as the Suicide Act 1961 (as amended by the Coroners and Justice Act 2009), the Human Rights Act 1998, and the Mental Capacity Act 2005 are discussed. The chapter examines several bioethical principles, including sanctity-of-life and quality-of-life debates; autonomy, beneficence, and medical paternalism; personhood, palliative care, and the double effect doctrine. Finally, it considers human rights issues, treatment requests, incompetent patients, and the concept of the minimally conscious state and locked-in syndrome. Recent cases are cited.
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47

Watson, Max, and Mark Thomas. Spiritual and ethical aspects of advance care planning. Oxford University Press, 2018. http://dx.doi.org/10.1093/oso/9780198802136.003.0006.

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This chapter describes linking spirituality and Advanced Care Planning (ACP); fear and ACP; how thinking about death changes people; religious views of ACP; denial and ACP; personal control and ACP; ethical principles and ACP; the spiritual work of ACP, including objective asessment; adaptation and ACP; and ritual, sacrament, and ACP. The discussion holds that dying is not primarily a medical event. The process of thinking about end-of-life issues can significantly impact on an individual’s attitudes, values, and belief systems. Dying patients can challenge the cultural illusion that life is going to last forever. This can be hard for families and professionals to accept and challenges their own fears around mortality. The importance and wisdom of religious rituals and religious symbolism cannot be ignored even in the most secular of contexts as they bring comfort to many. ACP is about life before death and can foster resilience and hope.
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48

(Editor), Peter Joel Hurwitz, Jacques Picard (Editor), Avraham Steinberg (Editor), and Benjamin Dr Sklarz (Translator), eds. Jewish Ethics And the Care of End-of-Life Patients: A Collection of Rabbinical, Bioethical, Philosophical, And Juristic Opinions. Ktav Publishing House, 2006.

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49

Macauley, Robert C. Ethics in Palliative Care. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199313945.001.0001.

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No specialty faces more diverse and challenging ethical dilemmas than palliative medicine. What is the best way to plan ahead for the end of life? How should physicians respond when patients refuse treatments likely to be beneficial or demand treatments not likely to be? Who makes medical decisions for patients who are too ill to decide for themselves? Do patients have the “right to die” (and, if so, what exactly does that mean)? Other ethics texts have explored these issues but often from an academic perspective that overlooks the practical realities of clinical medicine. Conversely, medical textbooks frequently lack sufficient philosophical depth to fully explore the complexities of these issues. This complete guide to the ethics of palliative care combines clinical experience with philosophical rigor to provide a comprehensive analysis of this fascinating field. Using relevant case studies, core subjects such as intensive symptom management at the end of life, physician-assisted dying, and palliative sedation are examined from historical, legal, clinical, and ethical perspectives. Whereas pediatric issues are often an afterthought in palliative care textbooks, this guide explores the unique nature of ethical dilemmas in the prenatal, neonatal, and adolescent age groups. Other important topics such as neuro-palliative care, organ donation, research, and moral distress are also covered in detail. Written with clinical nuance for medical professionals—and clear language as well as a glossary for lay readers—this guide offers all readers an opportunity to explore and understand the fascinating ethical issues facing patients suffering from life-threatening illness.
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50

Death and dying sourcebook: Basic consumer health information about end-of-life care and related perspectives and ethical issues, including end-of-life symptoms and treatments, pain management, quality-of-life concerns, the use of life support, patients' rights and privacy issues, advance directives, physician-assisted suicide, caregiving, organ and tissue donation, autopsies, funeral arrangements, and grief ; along with statistical data, information about the leading causes of death, a glossary, and directories of support groups and other resources. 2nd ed. Detroit, MI: Omnigraphics, 2006.

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