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Guidelines and Policies

Clinical Practice Guidelines
Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers
Journal of the Australian Medical Association 2007; 186 (12 Suppl): S77-S108

Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers All
Clayton et al
Medical Journal of Australia
Recommendations for end-of-life care in the intensive care unit.

End of Life Care and Decision Making Guidelines [PDF]   NSW
NSW Health
Guidelines set out a process of decision making in regards to end-of-life.

Guidelines for end-of-life care and decision-making
NSW Department of Health

Guidelines for a Palliative Approach in Residential Aged Care Cth
NHMRC
The guidelines aim to provide support and guidance for the delivery of a palliative approach in residential aged care facilities across Australia. They cover all major aspects of providing a palliative approach for an RACF resident, from attending to physical symptoms (e.g. fatigue, dehydration) and spiritual needs to dealing with the reactions of family members.

No Cardiopulmonary Resuscitation Orders NSW
NSW Health
This Guideline outlines an appropriate process for reaching such decisions, including initiating a conversation with patients or family, the basis for decision-making (where the patient either has or does not have decision-making capacity), and documenting and communicating such decisions.

Policy on Nursing Care of the Person who is Dying [PDF]   NSW
NSW Nurses Association

Withholding and withdrawing life-prolonging medical treatment. Guidance for decision making. UK
British Medical Association Ethics Committee
Comprehensive guidance on the controversial and emotive issue of withholding and withdrawing life-prolonging treatment from patients of all ages.

Toolkits and Protocols

Advance Care Planning position statement [PDF]   Australia
Palliative Care Australia
Palliative Care Australia’s position statement on Advance Care Planning.

American Medical Association Policies on End of Life Care USA
American Medical Association
Provides policies on futile care, quality of life, withholding and withdrawing medical treatment, physician assisted suicide, DNR Orders, Advance Directives and Surrogate Decision Making.

An Australian Timeline
Dying with Dignity NWS

Better Palliative Care for older people [PDF]   International
WHO
Aimed at health policy- and decision-makers, this booklet presents the needs of older people, the different trajectories of illnesses they suffer, evidence of underassessment of pain and other symptoms, their need to be involved in decision-making, evidence for effective palliative care solutions, and issues for the future.

Capacity Toolkit [PDF]    NSW
Attorney General
Provides an overview and checklist for assessing a person’s competence to make an advanced care directive or decisions about medical or dental treatment.

Conflict Resolution in End of Life Settings Project Working Group Report NSW
NSW Health
A review of issues in relation to end of life decision making and its resolution. The report provides strategies that can be utilised to address conflict that may arise in such settings. The report is currently receiving comments until 25th June 2010.

Conflict Resolution in End of Life Treatment Decisions
NSW Department of Health

CPR – Decisions Relating to No Cardiopulmonary Resuscitation Orders
NSW Department of Health

Death Penalty in Australia
Law Council of Australia

Death & Dying
Ethics & Health Law News

Do-Not-Attempt-Resuscitation Orders
University of Illinois College of Medicine

End of Life
The Hastings Center

End of Life Care: An Ethical Overview
Center for Bioethics – University of Minnesota

End-of-Life Care and Decision-Making – Guidelines
NSW Department of Health

End of Life Care Decisions and People Under Guardianship [PDF]    NSW
Office of the Public Guardian
The position statement of the public guardian regarding all end of life, palliative care and ‘no CPR’ decision making.

End-of-life Decisions
Ethics & Health Law News

End-of-life Decisions: Views of the BMA
British Medical Association

End of life Issues
British Medical Association

End-of-Life / Palliative Care
Bioethics Resources on the Web

End of Life Care Strategy – promoting high quality care for all adults at the end of life UK
Department of Health
Guidelines for developing a better approach to End of Life Care in the UK – guidance for reform rather than practice.

End of Life Decisions: UK Clinical Ethics Network UK
UK Clinical Ethics Network
Summary of the legal and ethical considerations concerning end of life issues in health care in the UK, including issues that might present to a Clinical Ethics Committee.

End of Life / Palliative Resource Centre USA
Medical College Wisconsin
Provides a range of resources for End of Life / Palliative Care. Includes Fast Facts, educational materials, links to web resources and a monthly newsletter.

Ethical issues involved in the transition to palliation and end of life care for people with chronic conditions: A Discussion Paper for patients, carers, and health professionals Australia
NHMRC
A Discussion paper from the NHMRC that was opened for submission and comment in 2009 on the transition to end of life care and palliation.

Explore a Topic: Death and Dying
Bioethics Research Library at Georgetown University

Health Care System Reform and Care at the End of Life: Guidance Document [PDF]    Australia
Palliative Care Australia
Guidelines for Health Care Reform to create better processes for end of life care. Also a useful resource for students, carers, health professionals, researchers and policy makers.

More information on ethics and end-of-life decision-making
Assoc Prof Lynn Gillam – Academic Director and Clinical Ethicist Children’s Bioethics Centre – Royal Children’s Hospital, Murdoch Children’s Research Institute and University of Melbourne.

National Palliative Care Strategy 2010
National Palliative Care Strategy 2010

Palliative Care: Support of and Communication with Family. Training Resource Australia
Palliative Care Australia
This training resource assists practitioners to identify the family, demonstrate an understanding of a cultural care consideration, discuss the importance of communication, demonstrate communication strategies to enable the provision of support to families, identify support structures for the family, discuss the importance of family in the palliative approach and identify barriers which may cause ineffective communication.

Restraint in care homes for older people: a review of selected literature UK
Social Care Institute for Excellence

Restraint in the Care of Older People Australia
Australian Medical Association
AMA Policy on the use of restraints in the care of older people.

Rights, risks and restraints: An exploration into the use of restraint in the care of older people
Commission for Social Care Inspection

Standards for Providing Quality Palliative Care for All Australians Australia
Palliative Care Australia

Self Directed Learning packed for Guidelines for a Palliative Approach in Residential Aged Care Cth
Palliative Care Australia
The Package contains resources that can be used by aged care staff to familiarise themselves and other staff in their aged care homes about the Guidelines and a palliative approach. The Package includes a manual, guidelines, a case scenario and power point presentations.

Suicide
Ethics & Health Law News

The end of life
Swiss Academy of Medical Sciences

The IAHPC Manual of Palliative Care 2nd Edition
International Association for Hospice & Palliative Care

The National Palliative Care Strategy – Supporting Australians to Live Well at the End of Life
Department of Health and Ageing

The role of the medical practitioner in advance care planning Australia
Australian Medical Association
The AMA’s policy position on Advance Care Planning and the role of the medical practitioner.

The role of the medical practitioner in end of life care
Australia
Australian Medical Association
The AMA’s policy position on End of Life Care.

Treatment and care towards the end of life: good practice in decision making
General Medical Council

Treatment and care towards the end of life: good practice in decision making. Guidance for doctors
General Medical Council

Treatment and care towards the end of life: good practice in decision making UK
General Medical Council
Widely accepted comprehensive guidelines on end of life care. Useful format, extensive contents page with links to each section.

Papers, Reports and Books

Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005
(2007) Critical Care Medicine 35(2): 605-622
Authors: Davidson JE, Powers K, Hedayat KM, et al
An investigation of end of life care and supporting the family of the patient. Provides recommendations as well as an analysis of current theories and practices in this field.

Conflict Resolution in End of Life Settings Project Working Group Report
NSW Health
A review of issues in relation to end of life decision making and its resolution. The report provides strategies that can be utilised to address conflict that may arise in such settings. The report is currently receiving comments until 25th June 2010.

Conflict resolution in end of life treatment decisions (literature review) [PDF]   NSW
Author: Professor Hillman for NSW Health
This literature review explores some of the ways to prevent End of Life (EOL) conflict starting with community awareness and advance care planning for EOL, to improved clinical communication strategies, earlier palliative care intervention, better identification of the dying patient, ethics consultations, mediation and other potential legal solutions. NSW Health commissioned this review by the Simpson Centre for Health Services Research, UNSW through the Sax Institute in 2008.

Death and Dignity — A Case of Individualized Decision Making
N Eng J Med 1991; 324(10):691-694

Dignity therapy: final words for final days
Chochinov, HM (2012) Oxford, Oxford University Press.

End-of-Life practice in European intensive care units: The Ethicus Study
(2003) JAMA 290: 790-797
Authors: Sprung CL, Cohen SL, Sjokvist P, et al
Investigates the frequency and types of end-of-life practices in European intensive care units and analyses similarities and differences.

“Not-for-resuscitation” orders in Australian public hospitals: policies, standardised order forms and patient information leaflets
MJA 2007; 186: 72–75

Resolving conflict in end of life care
(2005) MJA 183(5):230-231
Authors: Ashby MA, Kellehear A, Stoffell BF (ed).
Discussion of important processes and considerations for health care providers in situations of possible futility and end of life care.

The Ethics Committee of the Society of Critical Care Medicine
(2001) Critical Care Medicine 29: 2332-2348
Authors: Truog RD, Cist AF, Brackett SE, et al.
Recommendations intended to provide advice and information to clinicians providing end of life care in intensive care units.

ViewPoint Series on Religion and End of Life
(2005) Lancet 366 (9489)-(9491)
Authors: Various
Provides religious perspectives on End-Of-Life: Buddhist, Islam, Hindu, Christian, Catholic and Jewish.

Cultural Differences in End of Life Care
(2001) Critical Care Medicine29(2):N52-55
Author: Jean-Louis Vincent
Investigation of cultural differences in end of life care and need for physicians to be aware of the attitudes, not only of their colleagues, but of their patients and families.

Managing Conflict at the End of Life
(2005) NEJM352(23):2371-2373
Author: MG Bloche
Looks at the peripheral role of law in conflict at the end of life.

Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers
(2000) JAMA 284(19): 2476
Author: Karen E. Steinhauser et al
A study of the factors considered important at end of life by patients, family, physicians and other care providers. Emphasises the need to account for a diversity of perceptions.

Initiating End-of-Life Discussions With Seriously Ill Patients: Addressing the “Elephant in the Room”
(2000) JAMA284(19): 2502
Author: Timothy Quill
Studies from the medical literature, the patient’s and physician’s particular experience together, and the author’s clinical experience provide practical insights into how to address End of Life issues.

Ethics and Advance Care Planning in a Culturally Diverse Society
(2009) J Transcult Nurs 20: 405
Auhtors: Megan-Jane Johnstone and Olga Kanitsaki
Attempts to address the issue of a failure to give attention to cross-cultural considerations in advance care planning and end-of-life care.

What matters most in end of life care
(2006) Canadian Medical Association Journal 174(5): 627-633
Authors: Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D et al
Investigation through focus groups of what matters most to seriously ill patients and family members in quality end-of-life care.

Approaching Death in a Multicultural Environment
(2003) MJA 179 (6 Suppl): s14
Author: J Norelle Lickiss
Article on the need for education and training in palliative care to focus on cultural competence.

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