Ethical Framework for End of Life Care
The framework is an educational resource that aims to foster and support ethically and legally sound clinical practice in end of life treatment and care in Irish hospitals. The framework consists of 8 eight learning modules for health professionals, patients, families and the general public.
The framework was created out of a collaboration between University College Cork, the Royal College of Surgeons in Ireland and the Irish Hospice Foundation with contributions from ethicists, legal experts, sociologists and clinicians. It draws on a range of values and principles identified as important in end-of-life decision making. It is also informed by extensive international research on patient and family experiences of death and dying and from the contributions of health professionals and organisations.
Each of the 8 modules are formatted in a similar way, they contain:
- Key Points
- Main Topics
- Cases and Suggested Professional Responsibilities
- Further Discussion
- Summary Learning Guides
- References and Further Reading
The uniform presentation of the modules enables readers to take or leave parts or all of any module. In addition, individual cases are linked to specific Activities and Learning Guides so that these can be considered independently of the rest of the Module.
The framework is published in book form by Cork University Press for €25 available from www.corkuniversitypress.com/
End-of-Life Care: Ethics and Law, McCarthy J, Donnelly M, Dooley D, Campbell L, Smith D (2011)
Introduction to the Ethical Framework
This outlines the background to the framework, relevant national research, the overall aims & objectives, the philosophy and module format of the framework
To ensure the framework addresses concerns of the Irish public and is relevant and useful to the work of health professionals involved in end-of-life care in Irish hospitals, the Framework is informed by reviews and studies involving hospice, palliative and acute care services commissioned by the Irish Hospice Foundation in the last decade. It also draws on a body of research undertaken in 2007/2008 which addressed ethical issues in relation to end-of-life care in Irish hospitals.
Module 1 Explaining Ethics
This module discusses one key notion that is linked with death and dying; the meaning of a ‘good death’. Describes a range of different approaches to moral problems and distinguishes ethics from other perspectives such as religion and the law.
Defines ‘Ethics’ and ‘Healthcare Ethics’ and distinguishes ethics from other perspectives such as the law and professional codes.
Module 2 The Ethics of Breaking Bad News
Explains why telling patients the truth about their condition is important and reflects on the challenges that diverse cultural perspectives on patient and family relationships present to health professionals when they are considering breaking bad news. Presents arguments for and arguments against, breaking bad news.
Examines one case study from the west of Ireland that highlights some of the challenges involved in breaking bad news when a family member is worried about its impact. Presents arguments for, and arguments against, breaking bad news.
Module 3 Healthcare Decision-making and the Role of Rights
Considers the way in which deeply-held moral values in relation to dying and death have been enshrined and expressed in laws and court decisions. Explains the relationship between moral and legal rights and discusses the advantages and the limits of taking a rights based approach to the decision making process at end of life.
Study Session 3: Healthcare Decision-making and the Role of Rights Examines one case study from the west of Ireland that highlights some of the challenges involved in breaking bad news when a family member is worried about its impact. Presents arguments for, and arguments against, breaking bad news.
Module 4 Patient Autonomy in Law and Practice
Explains the legal right of patients to refuse treatment as well as the positive right of patients to control and direct how their treatment and care proceeds. Evaluates the contribution of an autonomy-based model of decision-making and the limits of patient autonomy. Outlines the legal test of capacity, and the health professional’s obligation to facilitate the participation of patients who lack capacity.
Study Session 4: Patient Autonomy in Law and Practice Explores what is involved in respecting patient autonomy. Looks at a UK case that draws attention to the issue of patient capacity and the process of informed consent in making decisions about treatment and care.
Module 5 The Ethics of Managing Pain
Describes the different kinds of pain and suffering that patients may endure and considers reasons why adequate pain relief may not be provided to different patient groups. Explains the challenge of determining adequate and proportionate responses to patients’ pain and ethically evaluates palliative measures that are sometimes provided to alleviate extreme and intractable suffering.
Study Session 5: The Ethics of Managing Pain Looks at some of the ethical issues that arise in relation to the management of children’s pain. Examines one case involving the care of a dying four-year-old girl that focuses on the need for good communication with patients’ families.
Module 6 The Ethics of Life-Prolonging Treatments (LPTs)
Explains the ethical and legal concerns that arise in relation to decisions not to start or to discontinue the use of life prolonging treatments. Presents and considers different positions on the ethical and legal status of euthanasia and assisted suicide.
Study Session 6: The Ethics of Life Prolonging Treatments (LPTs) Takes a critical look at the ethics involved in recording a Do Not Attempt Resuscitation (DNAR) order on a patient’s chart. Examines one case where the religious beliefs of the family played a significant role.
Module 7 The Ethics of Confidentiality and Privacy
Describes the onus on health professionals to protect the confidentiality and privacy of patients who are dying and deceased. Discusses exceptions to the ethical and legal requirement of confidentiality and the relevant interests of others such as patients’ families.
Study session 7: the Ethics of Confidentiality Explains the importance of patient confidentiality and considers the extent to which it should be maintained after the patient has died. Considers one Irish case that came to the attention of the Information Commissioner.
Module 8 Ethical Governance in Clinical Care and Research
Outlines and considers the role of Clinical Ethics Committees and the process of ethics consultation in clinical practice. Charts the emergence of Research Ethics Committees and their contribution to the regulation of research and the protection of research participants.
Looks at the role of clinical ethics committees and ethical consultants in healthcare settings. Considers a case involving the, possibly, ‘futile’ care of a premature neonate and offers some processes to support ethical decision-making that have been used in clinical practice in the UK and the US.