International Association for Hospice and Palliative Care Subject: IAHPC Newsroom William Farr, MD Dear Members and Colleagues: The complete IAHPC Online Newsletter has been uploaded to our website at: PDA version located here: There were a number of important developments in the palliative care arena during the past month. The Table of Contents: Message from the Chair and Executive Director Article of the Month Book Reviews , Roger Woodruff, MD Regards, Kathleen Foley, MD Chair Message from the Chair and Executive Director Dr. Kathy Foley and Liliana De Lima Dear Readers: Welcome to the March issue of the IAHPC Newsletter. We have several announcements:
Until next month, Dr. Ripamonti Sedation for Terminally Ill Patients with Cancer with Uncontrollable Physical Distress Author(s): Kohara H, Ueoka H, Takeyama H, Murakami T, Morita T. Abstract: Journal of Palliative Medicine 8/1: 20-25; 2005 Kohara et al. report the results of a retrospective study carried out in the terminally ill patients who received sedation during admission to a hospital-based palliative care unit (PCU) in National Sanyo Hospital in Japan. The Authors defined “sedation” as “a medical procedure to palliate patient symptoms refractory to standard treatment by intentionally dimming their consciousness”. The following data were collected: patients’ characteristics, symptoms requiring sedation, number of patients who underwent sedation, mean duration of admission, use of opioids and sedatives in the last week of life, the parenteral midazolam equivalent, the Palliative Performance Status (PPS), the level of consciousness during sedation (by means of Communication Capacity Scale). In the analysis, patients treated with increased doses of morphine or other analgesics resulting in drowsiness were excluded and nocturnal sedation was considered separately. In the year 1999, 124 patients were admitted to the PCU and 63 of them (50.3%) presented refractory symptoms and underwent sedation. The PPS scores before sedation were poor (10-20) in 83% of the patients. Symptoms requiring sedation were dyspnea (63% of patients) general malaise/restlessness in 40% , pain in 25%, agitation in 21%, nausea/vomiting in 6%. In 54% of the sedated patients more than one refractory symptom was reported by the patients. The patients died on an average of 3.4 days from the beginning of sedation. No differences were reported in the duration of hospitalization between sedated and non sedated patients. The comparison of the level of consciousness between sedated patients and non sedated patients reached a statistically significant difference at day - 2 (before death) (p < 0.05), at day - 1 (p<0.05) and on day of death (p < 0.01). The drugs administered for sedation were midazolam (first choice in 98% of the patients with a median daily dose during the last 4 days ranging from 26 to 32.5 mg; in 94% of the sedated patients it was used in combination with morphine), haloperidol (84% of the patients), scopolamine hydrobromide in 10%, chlorpromazine in 5%, flunitrazepam in 2% and ketamine hydrochloride in 2%. The drugs were administered via continuous intravenous infusion in 65% of the patients and via continuous subcutaneous infusion in 35% of patients. During the last week of life sedated patients received more opioids than non sedated patients.
In the palliative care setting, patient sedation is still an open issue and sometimes a controversial intervention which is being increasingly used for the management of refractory symptoms at the end of life. In this volume of the Journal of Palliative Medicine, this topic has been much considered. Some of the adjectives that different authors give in this regard are : total, palliative, controlled, terminal sedation. Moreover it may be used for refractory symptoms, refractory suffering, symptoms difficult to control, intractable existential suffering/distress. This study, with all the limitations of a retrospective study, confirm that in the last days of life it is not always possible to keep the patient aware and at the same time free of symptoms. Dyspnea, agitation and pain are the main symptoms that most frequently require terminal sedation. Unlike other authors who suggest the use of barbiturates, midazolam is considered the most used and efficient sedative drug even at low doses.
Please visit the following link to read past Articles Of The Month: Roger Woodruff, MD CARING FOR THE DYING Critical issues at the edge of life Robert M. Baird and Stuart E. Rosenbaum (Eds) This is a collection of twenty-one essays reproduced from a variety of other medical journals, focusing on various aspects of palliative care. The first section deals with the hospice movement, including a comparison of the UK and USA . The second deals with palliative care including the role of palliative sedation and the possibility that legislation may discourage doctors from prescribing adequate analgesia. The third deals with spiritual care for the dying. The final section covers the legal issues in end-of-life care. This book deals with problems we encounter on a daily basis and will be of interest to anyone who works in palliative care and it is useful to have these essays collected together in a single volume. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ HERBS AND NATURAL SUPPLEMENTS - An Evidence-based Guide Lesley Braun and Marc Cohen Many clinicians are poorly informed about complementary medicines even though, according to the statistics, patients use them by the truckload. This reference guide sets out to bridge that gap and provide scientific information on the 100 most popular herbs and natural supplements. The information on each substance is clearly set out in a manner similar to a drug formulary: chemical components/actions/clinical uses/dosage/toxicity/adverse reactions/interactions/contraindications and precautions/pregnancy use. The material is well referenced. However, it should not be forgotten that the field of herbal medicine remains in its scientific infancy and the appendix at the back of this book dealing with levels of evidence indicates that less than one-third of the indications listed for the various substances are based on clinical trials. I looked up my favourite contentious issues. I found a balanced discussion regarding the toxicity of kava kava and the benefits of St. John’s Wort. The discussion on shark’s cartilage did not question whether the antiangiogenic molecules known to be in the cartilage would be absorbed after oral consumption. I was pleased to see that hydrazine and laetrile were not included; but when I thought how frequently patients ask me about apricot kernels, I wondered whether they should be included briefly to underline their ineffectiveness and toxicity for the novice in the field. I found this guide to be well-presented, informative and user-friendly. It will be a useful reference in the hospital library. Available from www.elsevier.com.au ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ OXFORD TEXTBOOK OF PALLIATIVE MEDICINE Third Edition (Paperback) The third edition of the Oxford Textbook of Palliative Medicine, edited by Derek Doyle et al, is now available in a more affordable paperback edition. I reviewed the OTPM 3e when the hardback edition was released a year ago and described it as the gold standard reference for palliative medicine. Nothing has happened to change that opinion. The paperback edition is considerably less expensive, which I hope will allow wider access to this invaluable resource for all who work in palliative care, worldwide. The comparative prices for the hardback and paperback editions are £150 and £59.95, SUS225.00 and $US115, and $AU485.00 and $AU180.00. Find our more about this book here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ A BURDEN OF SILENCE - My Mother’s Battle With AIDSNancy A. Draper Nancy Draper has written a moving account of her elderly mother’s battle with HIV/AIDS. The disease was diagnosed in 1988, the result of a blood transfusion given during cardiac surgery several years earlier. The title refers to the fact that her mother felt compelled to keep the diagnosis secret and suffered in silence because of the social stigmas associated with the disease. During the earlier part of her illness, there are numerous examples of the pain and harm caused by insensitive health care professionals, which serve as lessons for those who work in palliative care. Thankfully, her mother finally received some proper palliative care during the terminal phase of her illness. Find our more about this book here ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ BRIEF INTERVENTIONS WITH BEREAVED CHILDREN Barbara Monroe and Frances Krause (Eds) However much we desire to protect children, death and loss are part of life, and dealing with bereaved children is part of palliative care. In her foreword, Dr. Grace Christ says “What makes this book so valuable is that Barbara Monroe and her colleagues have brought together the very latest in individual, group, and community approaches, thoroughly informed by the cutting edge of practice and research in this gradually emerging area of children’s bereavement. Most impressive in this book is the broad range of interventions and special techniques described for work with bereaved children. The use of the Internet, telephone and newer technologies, children’s activity groups, volunteer programs, and self-help groups for caregivers are all vital components of an effective program.” I don’t think I can describe it better. Reading this book brought back memories that I do not cherish from a long time ago, but my spirit was lightened reading about the enormous and continuing advances made in the management of bereaved children that have occurred since that time. One cannot but admire the inventiveness of some of the interventions described, and the enthusiasm is infectious. I thought the exploration of brief family interventions before bereavement was particularly interesting. Anyone who has anything to do with bereaved children should read this book. Strongly recommended. Anne Laidlaw Welcome to the Webmaster's Corner!
Featured IAHPC Section: The Hospice & Palliative Care Clearing House Program is designed to help programs and individuals who are interested in receiving donated medical supplies, journals, publications and helpful items match with donors in developed countries.
I am very pleased to announce that www.hospicecare.com has reached an alltime high for the month of February 2005. There were over 1000 visitors per day! EXTENDED! Looking for an article or section on our website? Visit our Book & Video Shop for your hospice & Palliative care needs. Coming Events! Do you have a Hospice & Palliative Care event you wish to promote? Did you know that you can place the IAHPC home page on your desktop is 4 easy steps using Internet Explorer? IE: Until next month! Dr. Farr News from The Gambia , West Africa Future Care Hospice was officially registered as a charitable organization on Oct 2004 and started with a home care service with four nurses, one chaplain, five auxiliary nurses and three voluntary workers. Two nurses have since left due to lack of funds to pay for their salaries.
Released by NHPCO and the United States Veteran’s Administration (VA) February 10, 2005 ( Alexandria , Va ) A new report, “VA Transforms End-of-Life Care for Veterans,” has been released by the Department of Veterans Affairs and the National Hospice and Palliative Care Organization. A joint project of the VA and NHPCO, the monograph shares advancements made in end-of-life care for veterans and examines successful hospice-veterans partnerships. The importance of quality, compassionate care for dying veterans and their families is emphasized and some of the unique needs of veterans are described. More than 1,800 Veterans die every day in this country—that’s about 54,000 people a month representing a quarter of all deaths in the U.S. The moving stories of individual veterans and their families who have benefited from quality end-of-life care are shared and best illustrate the importance and value of this care. Vietnam veteran Paxson Parsons is a striking presence despite the lung cancer that has placed him under the care of The Hospice of the Florida Suncoast in Largo , Fl. He encourages other veterans with life-threatening illnesses to be open to hospice care. “It’s not about dying—that part’s up to you,” Parsons said. “Hospice is just a helping hand, helping you live with the disease. It’s helped me a lot.” Thomas Edes, M.D., VA chief of home and community based care, remarked, “We are raising expectations at the national and local levels, so that a terminally ill veteran can go to any VA facility and obtain hospice care. If needed hospice care is not forthcoming, we want them to contact us.” In 2004, NHPCO provided ten grants to state hospice and palliative care organizations working to establish stronger relationships with VAMCs. A number of other end-of-life advocates have been actively promoting partnerships and collaborative efforts across the nation. The report offers practical advice on ways community hospice providers can work with VAMCs. “NHPCO has long advocated that veterans should received hospice care and that community hospices should be reimbursed by the VA for the care they provide to appropriate, eligible veterans,” says Judi Lund Person, NHPCO’s vice president for quality end-of-life care. “NHPCO will continue to strongly support this work and relationship building as we look for funding opportunities to further advance the cause.” A PDF of this report may be downloaded from the NHPCO website, http://www.nhpco.org/files/public/va_care_brochure_2005.pdf. For More Information Jon Radulovic
“Welcome to a “special announcement” issue of E-News. Following changes agreed at our AGM on 21st September, the National Council for Hospice & Specialist Palliative Care Services will “today” officially launch under its new name, “The National Council for Palliative Care.” http://www.ncpc.org.uk/ We are extending our mission to promote the provision of palliative care for all who need it. We will continue to promote improvement in the quality and availability of palliative care to people with cancer, their families and carers, and further promote the extension of palliative care to people with other life threatening conditions drawing, where appropriate, on the lessons learnt with cancer care. Council will continue to speak with one voice on key issues and to influence government policy. As a multi-professional and collaborative body we will work closely with policy makers, regulators, national charities, user organisations and academic departments to ensure the widest possible dissemination of knowledge and best practice across all sectors. Our website has been improved and updated and is now at a new address: visit www.ncpc.org.uk to learn about Council's work, buy publications, book places on an event or join our annual subscription scheme. Our address and telephone numbers all remain the same, but if you would like to email any of National Council's staff the format has changed, for example: [email protected] If you have any questions about the future activities of *The National Council for Palliative Care* please call the HQ team on 020 7520 8299 or email [email protected] We look forward to working with you and for you in the future.
“An opportunity for Hospice and Palliative Care services to raise funds and increase awareness of their work.” “RAISE YOUR VOICE ON 8 OCTOBER 2005! “ When Voices for Hospices – the World’s largest singing event will take place in churches, village halls, theatres, concert halls, pubs, clubs, schools and a host of other venues right across the globe!
For details please visit their web site:
Hungarian Hospice-Palliative Care Association Launches a monthly e-newsletter. “ Hungarian Hospice-Palliative Association, with the support of the Open Society Institute Network Public Health Program's International Palliative Care Initiative and the European Association for Palliative Care. Our ultimate goal is to contribute to the development of care of the patients and families suffering with serious life-threatening illnesses. This newsletter is to bring us together, to share experiences between experts of the region, but also to show our profile to the world.” http://www.hospice.hu/ A Russian language version is also available.
Dear Liliana, Please accept my warm greetings and best wishes for you. Last week we received your donation containing books, journals and educational materials on palliative care through IAHPC Clearing House Program. The materials are extremely useful and we have started a small department library with your donation. It will have free access to the doctors and nurses in our region. Many thanks… I hope you will continue this project with same enthusiasm. Your donation has also prompted me to start an Academic Club in Palliative Care which will host regular monthly academic programs in palliative care for the medical professionals and volunteers. The program will be on every second Saturdays and will be freely accessible to all concerned. We had a trial run of the program last week and it was successful. Once again thanking you very much for your encouragement and assistance. I humbly request you to continue the same. With warm regards,
Children’s Hospice International’s 17th World Congress will be held from Information is now available at www.chionline.org. Children's Hospice International William Farr, MD Join IAHPC Special Promotion Extended: If you RENEW OR JOIN IAHPC as a member, you can buy the IAHPC Publication "Palliative Care in the Developing World: Principles and Practice" for only an additional $10.00! Please consider joining the IAHPC's effort to improve palliative care in developing countries. We recently developed a new sliding fee schedule. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ****Thanks to all contributors to this issue.**** 7 Ways To Help The IAHPC William Farr, MD IAHPC Newsletter Editor |