Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Conversations on Dying: A Palliative Care Pioneer Faces His Own Death.

Editor's Note The journal is delighted to continue a collaboration with the International Association for Hospice and Palliative Care (IAHPC) in publication of book reviews relevant to symptom control in advanced disease. These reviews are adapted from the work of Roger Woodruff, MD, FRACP, FAChPM, an internationally recognized oncologist and palliative care specialist physician from Australia. Dr. Woodruff's reviews appear concurrently or did so previously in the IAHPC Newsletter, which is accessible through the IAHPC Web site: http://hospicecare.com .

Paediatric Palliative Medicine, 2nd ed.

Editor's Note The journal is delighted to continue a collaboration with the International Association for Hospice and Palliative Care (IAHPC) in publication of book reviews relevant to symptom control in advanced disease. These reviews are adapted from the work of Roger Woodruff, MD, FRACP, FAChPM, an internationally recognized oncologist and palliative care specialist physician from Australia. Dr. Woodruff's reviews appear concurrently or did so previously in the IAHPC Newsletter, which is accessible through the IAHPC Web site: http://hospicecare.com .

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide.

BACKGROUND: Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement. PURPOSE: To describe the position of the IAHPC regarding Euthanasia and PAS. METHOD: The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms "position statement", "euthanasia" "assisted suicide" "PAS" to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors. RESULT: IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. CONCLUSION: In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating.

The Oxford Textbook of Palliative Medicine, 5th Edition.

EDITOR'S NOTE The journal is delighted to begin a collaboration with the International Association for Hospice and Palliative Care (IAHPC) in publication of book reviews relevant to symptom control in advanced disease. These reviews are adapted from the work of Roger Woodruff, MD, FRACP, FAChPM, an internationally recognized oncologist and palliative care specialist physician from Australia. Dr. Woodruff's reviews appear concurrently or did so previously in the IAHPC Newsletter, which is accessible through the IAHPC Web site: http://hospicecare.com .

The effectiveness and adverse effects profile of "burst" ketamine in refractory cancer pain: The VCOG PM 1-00 study.

This multi-centre study of adjuvant "burst" ketamine in palliative care in-patients documents its effectiveness, duration of pain relief, and adverse effects (AE) profile. Patients received a three-to-five day continuous subcutaneous infusion (CSCI) of ketamine escalated from 100 to 300 to 500 mg/24 hours if required. When the effective or maximum tolerated dose was attained, the infusion was continued for three days and each patient assessed as a responder or non-responder using strict criteria. The response rate was 22/44 (50 percent), with 4 (9 percent) becoming pain-free. Pain relief lasting two or more weeks was documented in 50 percent of responders. AEs were documented daily using the National Cancer Institute (NCI) Common Toxicity Criteria 0-4 scales. There were 11 grade 3 and 4 neurological AEs. However, no responders elected to cease treatment early due to neurological AEs. We concluded that this protocol in the controlled environment of an in-patient PC unit is relatively safe and simple with reasonable effectiveness.

Developing a web-based information resource for palliative care: an action-research inspired approach.

BACKGROUND: General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. METHOD: The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). RESULTS: Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). CONCLUSION: Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.

The International Association for Hospice and Palliative Care: international activities and future initiatives.

The International Association for Hospice and Palliative Care (IAHPC) is a global organization dedicated to the development and improvement of palliative care. The mission of IAHPC is to increase the availability and access to high quality hospice and palliative care for patients and families throughout the world. It does this by promoting communication, facilitating and providing education, and by becoming an information resource for patients, professionals, health care providers and policy makers around the world. This report describes activities of the IAHPC throughout the word and planned future initiatives.