International Association for Hospice and Palliative Care
Subject: IAHPC Newsroom
2004; Volume 5, No 11, November
Dear Members and Colleagues:
The complete IAHPC Online Newsletter has been uploaded to our website at:
http://www.hospicecare.com/newsletter2004/nov04/index.html
PDA version located here:
http://www.hospicecare.com/newsletter2004/nov04/pda-version.htm
Table of Contents:
1. Message from the Chair and Executive Director: Dr. Bruera and Ms. De Lima
2. Article of the Month: Dr. Ripamonti
3. Book Reviews: Dr. Woodruff
4. Regional Report � Legogote, South Africa: Rev A.T.H. Munnings
5. Reflections of an IAHPC Board Member: Dr. Odette Spruyt
6. IAHPC�s Palliative Care Story Competition � win a book!
7. Webmaster�s Corner: Ms. Laidlaw
8. Editor�s Notes: Dr. Farr
Sincerely,
Eduardo Bruera, MD
William Farr, PhD, MD
1. Message from the Chair and Executive Director
Dear Readers: This month there are several important announcements:
1. As many of you already know, we are now accepting applications for our IAHPC Annual Recognition Awards Program in three categories:
1. Individuals "The Vittorio Ventafridda Award"
2. Institutions and
3. Universities
2. We are in the process of updating
our International Directory where we have more than 800 hospices and palliative care programs listed from around the world. Please take a minute to verify that the information we have for your program
or institution is correct in the International Directory.
If you need to make changes, updates or corrections, please fillout the form on the directory. If your institution or program is not listed in our International Directory, please send us the name of
the institution or program, the name of the contact person, address, telephone, fax, email and URL if available. The International Directory serves as an important tool for networking and as a resource
for patients and families who look for treatment centers around the globe.
3. We are proud to announce that the IAHPC website has received the Health on the Net (HON) Foundation Code. The Health on the Net Foundation has elaborated the Code of Conduct to help standardize the reliability of medical and health information available on the World-Wide Web. The HON code defines a set of rules to hold Web site developers to basic ethical standards in the presentation of information and makes sure readers always know the source and the purpose of the data they are reading. Many thanks to Anne Laidlaw, our webmaster, for her hard work and help to make this possible.
4. Many of you have already seen the 2nd Edition of the IAHPC Manual of Palliative Care which was recently uploaded in our site. The Manual was written by two of our most dedicated board members, Drs Derek Doyle and Roger Woodruff. It provides basic and useful information on the treatment of symptoms associated with advanced disease as well as ethical, spiritual and administrative issues and has already proven to be on of the most visited pages in our website. The IAHPC Manual is available here. We invite you to take advantage of this wonderful resource and use it in your practice and teaching activities.
5. The Public Library of Science (PLOS) has presented the inaugural issue of PLoS Medicine, an international open-access medical journal from the Public Library of Science. The issue includes an article on Palliative Care in Africa and the Caribbean by Dingle Spence, Anne Merriman and Agnes Binagwaho. The article can be viewed by clicking on http://medicine.plosjournals.org/ then click on Table of Contents where you will find the article.
6. The Department of Palliative Care and Rehabilitation Medicine at the MD Anderson Cancer Center recently organized its 8th Annual Interdisciplinary Approach to Palliative Medicine in Cancer Care. Many thanks to MDACC and the meeting organizers for giving us free space to set an IAHPC desk in the exhibition area. Two of our Board members attended the meeting as guest speakers: Dr MR Rajagopal from Amrita Institute of Medical Sciences in India and Dr. Nessa Coyle from the Memorial Sloan Kettering Cancer Center in New York. We were very glad to see both of them in Houston and discuss some ways in which we can continue to help the promotion of palliative care around the world. Below are some pictures of the meeting.
PHOTO � The International Fellows from the Dept of Palliative Care with Dr Bruera, Liliana De Lima, Nessa Coyle and Dr Rajagopal
PHOTO – The staff and faculty of the Dept of Palliative Care at MDACC with Nessa Coyle, MR Rajagopal and Liliana De Lima
PHOTO – Our Chair, Eduardo Bruera with our Board members, Nessa Coyle, MR Rajagopal and our Executive Director, Liliana De Lima
Until next month,
Eduardo Bruera, MD, Chair person
Liliana De Lima, MHA. Executive Director
Carla Ripamonti, MD
TOPICAL HONEY APPLICATION VS. ACYCLOVIR FOR THE TREATMENT OF RECURRENT HERPES SIMPLEX LESIONS
Author(s): Noori S. Al-Waili
Abstract: Med Sci Monit 2004; 10/8: MT94-98
In a previous article of the month (June 2003) a study by Biswal et al. on the clinical efficacy of topical application of honey in healing post-radiotherapy mucositis in cancer patients was reported.
Here is another study of the use of honey in clinical practice.
Al-Waili carried out a prospective randomized clinical trial comparing topical applications of honey vs acyclovir cream in patients with recurrent episodes of labial and genital herpex simplex infections (lesions).
Sixteen otherwise healthy patients were studied. They had:
1. labial (N� 8) and genital (N� 8) herpetic lesions,
2. a history of recurrent attacks (a mean of 6 episodes for genital herpes and 5 for labial herpes in the previous year; duration of episodes from 7 to 12 days without antiviral treatments)
3. not been previously treated with systemic acyclovir
4. a positive blood samples to HSV antibodies
5. treatments during the course of two consecutive attacks with topical applications of honey for one attack (4 times a day for 15 minutes) and 5% acyclovir cream (six times a day), for the other attack.
For comparison purposes between treatments, the following parameters were considered:
- healing time of the skin
- time to complete pain relief
- pain intensity (from none to severe)
- duration of episodes
- n� of patients who did not develop skin lesions (aborted cases)
- occurrence of crust
For labial herpes, mean duration of attacks, occurrence of crust, healing time and pain duration (all considered in n� of days) were significantly lower when treated with honey with respect to acyclovir treatment (p< 0.05). Similarly for genital herpes, all parameters considered were significantly in favour of honey treatment except for the occurrence of crust that was 28% better with honey treatment but not significantly different with acyclovir treatment.
All patients treated with acyclovir, labial or genital herpes lesions, developed crust whereas only half of the patients developed crust when honey was used.
In 5 patients on honey treatment, the typical burning sensation and irritating pain, characteristic of herpetic lesions, disappeared after 24 hours whereas this did not occur in any of the patients treated with acyclovir. In these latter patients, pain during the first 24 hours and for some in the first 48 hours was mild to moderate.
In 3 patients treated with honey and in none treated with acyclovir the attacks aborted.
As far as side-effects are concerned, none were encountered in patients treated with honey whereas 3 patients suffered from intense itchiness with acyclovir
Why I chose this article
This non-blind study carried out on a small number of patients confirms the necessity to further investigate the clinical effects and antimicrobial properties of honey and its healing properties on mucous lesions and symptoms associated with them.
Regards,
Carla Ripamonti, MD
Member of the Board of Directors, IAHPC
Roger Woodruff, MD (Australia)
CARING
FOR DYING PEOPLE OF DIFFERENT FAITHS
(Third Edition)
Julia Neuberger. Radcliffe Medical Press, 2004. 104pp.
ISBN 1-85775-945-1. RRP �19.95, $US35
This new edition of Julia Neuberger�s little classic provides a wealth of information about the beliefs, customs and practices of the world�s major
religions, with particular regard to how these influence end-of-life care and what happens after the death. There are also chapters on Chinese, Japanese and Afro-Caribbean beliefs and customs.
This edition has a new chapter on Humanism.
Excellent. Highly recommended.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PALLIATIVE
CARE IN NEUROLOGY
Raymond Voltz, James L. Bernat, Gian Domenico Borasio, Ian Maddocks, David Oliver, Russell K. Portenoy (Editors)
Oxford University Press, 2004. 448 pp. ISBN 019 850 8433.
RRP �79.50, $US 120, $AUD 275
The preface to this book states that 'physicians, patients and the public continue to harbor fears and misunderstandings
about terminal illnesses and palliative care. Many physicians continue to believe that "nothing can be done" for such patients because they are inexorably dying, and they remain ignorant
of accepted principles and practices of palliative care.' Well, here is a book to change all that, for neurologists at least.
After a brief introduction to the basic principles of palliative care, the book is divided into six main sections. The first deals with the neurological disorders that lead to terminal illness,
from stroke to motor neuron disease to muscular dystrophy. Each chapter begins with an illustrative case history, provides a good overview of the disease process and treatment with particular
attention to the palliative care management. The second section (12 chapters) deals with the management of common symptoms in these patients. The third deals with other problems associated
with advanced disease and includes an excellent chapter on managing the dying patient. The next section is particularly useful and covers the ethical issues that can cause so much difficulty in
clinical practice: personal identity, food and hydration, sedation, advanced directives, refusal and withdrawal of treatment, physician-assisted suicide and euthanasia, and informed consent. The
final section deals with psychological, spiritual and cultural aspects of care.
The final chapter is very special. It comprises the reflections of Dr. Ben-Joshua Jaffe as he became increasingly incapacitated with motor neuron disease. His record is both moving and most
insightful, and his discussion of the difference between acceptance and resignation is poignant.
This book will be a valuable resource for neurologists, providing them with a wealth of information about symptom control, communication, end-of-life care and the ethical issues that accompany terminal
illness. It should be compulsory reading for all neurologists in training. Although written for neurologists as part of OUP�s Contemporary Neurology Series, I think this book would also
be a very worthwhile addition to the palliative care library. The editors are to be congratulated on a job well done.
My only concern is that the cost of this book will prevent it reaching the breadth of audience that it deserves. It is a beautifully presented hardback volume with glossy paper, but similarly
sized paperback texts from Oxford sell for one-third to one-half of the cost of this volume. This book makes a strong case for other volumes about palliative care in other medical specialties,
but I believe they should be produced in a manner that allows the widest possible readership.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
DEATH,
DYING, AND SOCIAL DIFFERENCES
David Oliviere and Barbara Monroe (Eds). Oxford University Press, 2004. 205pp.
ISBN 0-19-852775-6. RRP �24.95 $US 39.95
How often in palliative care do you hear patients referred to as "a case of this" or "a case of that"? This book serves as a timely reminder that palliative care must be able to respond appropriately to patients from a variety of social circumstances and communities and that each individual�s treatment should be appropriate to their social context. It underlines how important the social background is and presents discussions of what is appropriate end-of-life care related to poverty, social class, gender, sexuality, age, ethnicity and religion, as well as the circumstances of patients and carers who have disabilities, experience psychiatric illness, are refugees, are subject to abuse, or who are prisoners. I found this book very thought-provoking and a timely reminder of the flexibility needed for truly holistic person-centered care.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
NURSING
SUPPORT FOR FAMILIES OF DYING PATIENTS
Rosemary McIntyre. Whurr Publishers Ltd, 2002. 266 pp. ISBN 1-86156-270-5. RRP �22.50, $US32, $AUD65.
What are the feelings and needs of families of patients dying on acute hospital wards? Are they adequately managed? How do staff nurses
feel when dealing with the relatives of dying patients? Do they avoid it, if possible? Is it stressful?
This book is a detailed report of a research project designed to address these questions. Phase 1 of the study set out to define the key issues from points of view of both the relatives and staff.
A two-day workshop was then held to discuss the findings and then to plan the development, implementation and evaluation of quality assurance standards for improved family support during terminal illness.
Post-intervention interviews with relatives and with staff document improvement and the liberal use of direct quotations from the interviews is a highlight.
This book would be a useful addition to the palliative care library shelf, particularly in acute hospitals. It is a demonstration that change is possible and the clear documentation of all the
processes involved make it a good example of how to go about quality assurance improvements.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TEACHING
PALLIATIVE CARE – A PRACTICAL GUIDE
David Jeffrey (Ed). Radcliffe Medical Press, 2002. 102 pp.
ISBN 1-85775-579-0. RRP �19.95, $US40.
Teaching palliative care is perhaps a little more difficult that other medical specialties because of the multidisciplinary nature of the topic as well as the learners. This excellent little book provides just about all you need to know about planning, preparing, the different techniques of teaching, and evaluating palliative care teaching. It is full of helpful hints and there are numerous useful checklists. Even experienced teachers will benefit from having this book available when next planning a lecture or a course. I will.
Roger Woodruff
Medical Oncologist and Director of Palliative Care, Austin Health, Melbourne, Australia
November 2004
4. Regional Report – Legogote, South Africa:
Opening of Legogote Community Hospice
Rev A.T.H. Munnings B.Sc. B.Th. (Hons)
On June 9th the Legogote Hospice was opened with all due ceremony. A group of over 100 representatives from the local area gathered for the opening. Both leaders from the traditional community structures and the Local councilor spoke of the dedication and work done at the Hospice and of how great the gardens and building looked and challenged the local youth to do the same to the surrounding public areas.
Zale Madonsela from the Department of Health spoke of the department�s plans and how step-down units fitted into their ideas and their plans to support NGOs. A new relationship between the Department and us should be forged. A follow up visit to the ACTS Training centre by the entire executive of the Dept of Health and Welfare was very encouraging.
Finally, Mary Calloway who was visiting us from America spoke about the work that had been started and how wonderful it was that the local community was so involved. She and Sister Beatrice Tshabalala who had just recently retired from Legogote clinic then opened the Hospice.
Many thanks were expressed to the Mesab directors who had contributed directly to this project.
There followed in the best of traditions a luncheon that had been prepared by the ACTS catering staff. Everybody ate well including the wonderful choirs that had arrived to sing to us and help us celebrate a wonderful occasion.
The exciting developments from this occasion are the involvement in the running of the unit. The young men of the area have tidied up the surrounding public spaces. Two ladies from the community are doing the catering and the laundry on a subcontracted basis. The unit filled up almost immediately and has been a significant contributor to the palliative care of patients in the area.
PHOTOS - Photos of the Opening of Legogote Community Hospice
5. Reflections of an IAHPC Board Member:
Dr. Odette Spruyt
My term on the Board of IAHPC is drawing to a close, so this is an opportunity to thank the Organisation for allowing me to participate in their work and to be associated with so many dedicated and inspiring leaders in palliative care - people who are able to recognise a deep bond with colleagues in resource poor areas and are stirred to work with them to mutual benefit. It has been a privilege.
My work at present is in a comprehensive cancer centre, the Peter MacCallum Cancer Centre in Melbourne, Australia. The particular challenge I face in my day to day work is to work at the interface of palliative care and cure-directed / life-prolonging care. Too often this results in conflict. In a sense, this is to be expected for it creates a healthy tension to "keep us all honest." It certainly can be uncomfortable and at times painful. How often have we vented our frustrations in the privacy of our team at what appears to be futile and burdensome treatments, a lack of clarity in the goals of care, and the failure to effectively recognise the inevitability of dying and imminent death. I wonder how often our oncology colleagues have similarly wrung their hands at our perceived nihilism, our readiness to diagnose dying, our push for the �transfer to hospice� rather than that one more attempt to stem the tides of death.
Iatrogenic death appears to be a particular blind spot for all of us. I reflect on a recent case of a patient with irreversible and fatal neutropenic sepsis. While feelings of guilt and distress in the treating teams are understandable, they ought not to result in inadvertent additional burden to the patient. Failure to provide optimum comfort care and symptomatic management of terminal delirium and other symptoms in such patients is a failure in our basic duty of care. Reluctance to manage end of life symptoms seems to point to an underlying and deep seated confusion that such management will hasten death. As Ellershaw teaches in his end-of-life integrated care pathways, and as many others have beautifully articulated, symptomatic measures to relieve suffering do not preclude other carefully considered efforts to reverse life-threatening complications. Rather these measures are part of a comprehensive coordinated management. In my place of work, it seems that the balance between palliation and life-prolonging efforts is frequently tilted to the detriment of optimum end of life care. Many opportunities for clarifying patient and family priorities are lost in the medical maze of well-intentioned but excessively burdensome therapies. How much this stems from a death-denying culture which underlies modern cancer therapy is a point for philosophical debate.
My final comments rise out of my own recent personal experience. I have been on part-time maternity leave for the past 3 years, following the birth of 2 beautiful sons. During this time, our department struggled without locum cover because of the lack of trained and available palliative care consultants in this country. This situation is not unique in Australia. While we are fortunate to have established training in palliative medicine that is recognised by the Royal Australasian College of Physicians and a recognised Chapter of Palliative Med (established in 2000) which oversees training of future consultants, we struggle to attract trainees to this field. This contrasts markedly with the UK where palliative medicine is a popular medical specialty for trainees. An explanation for the lack of trainees in Australia is the paucity of consultant physician positions in the workforce - surely a chicken and egg problem. It seems to me that we must lobby more aggressively for government and hospitals to establish such consultant positions while we are training doctors to fill them. For this, we need the courage of our convictions that the work we do will stand the test of time and we must have faith that palliative care will be increasingly appreciated as an essential component of excellence in modern healthcare.
Dr Odette Spruyt
Department of Cancer Pain and Palliative Care
Peter MacCallum Cancer Centre
St Andrews Place
East Melbourne
Victoria 3002
6. IAHPC’s Palliative Care Story Competition – WIN A BOOK!
Win a copy of the new edition of Roger Woodruff�s Palliative Medicine: Evidence Based Symptomatic and Supportive Care for Patients with Advanced Cancer (4th Edition) Oxford University Press, 2004.
To enter please send a short story about palliative care in no more than 60 words. We are announcing this competition in the current issue of this Newsletter and we will also repeat it in the December issue.
THE DEADLINE for receipt of your story is December 15, 2004. The winner of the book will be announced in January and the story will be published in our newsletter � please share your stories with us!
Send entries to Liliana De Lima at [email protected]
Anne Laidlaw
Welcome to the Webmaster's Corner!
Here you can learn about the new articles & features we've added to the IAHPC website each month.
This month we have allot of great things to tell you about.
IAHPC's Hospice & Palliative Care Manual Second edition is now available.
Looking for an article or section on our website? View our Site map!
We now have 4187 email subscribers to this newsletter. If you wish to receive our monthly newsletter via email fill in your name & email in the box on the left hand side of this page.
IAHPC was on the Road Again! This time we were visiting Montreal, Quebec Canada at the 15th International Congress on Care of the Terminally Ill. Click Here to view our snapshots of our trip.
Professionals Available to Spend Time Abroad - View professionals who are willing to spend time abroad. You can submit yourself to be added to the list to spend time abroad. We had 4 new listings this month! More Info Here
Did you know that you can help donate to the IAHPC by shopping at www.Amazon.com? Not Just Books! From Toys, Electronics & Fashion to household items remember Amazon for your holiday shopping.
Today's specials!
http://www.amazon.com/exec/obidos/redirect?tag=iahpc-20&path=tg/browse/-/909656/
| Purchase items with the IAHPC Logo on them using the link below to donate to the IAHPC while shopping for cool items. http://www.cafeshops.com/hospicecare |
 $15.79 |
 $14.97 |
 $12.00 |
Our Book & Video Shop has has a few more changes in the navigation to help you find your way around better. You can now view by author or category. Last month we added 5 more new titles with reviews.
The International Directory has had 21 new listings this month, a great resource for all.
Have a hospice and/or palliative care related question? Or just want to discuss hospice & palliative care issues? Join in at our Forum. No registration required. It's Free
Coming Events! Do you have a Hospice & Palliative Care event you wish to promote?
Please visit our Future Events section to view events and add your event to our website. 6 new listings added this month!
Did you know you can Subscribe
& Save Up To 80% on popular magazine subscriptions while helping the IAHPC! Over 80,000 titles to choose from.
Click Here to learn more!
Internet History!
The first email message was sent back in 1965. It took 6 years for the first unsolicited "junk" e-mail sent to large numbers of people to promote products or services better known today as
"SPAM".
Drop by often & don't miss out!
Until next month!
Anne Laidlaw
IAHPC Webmaster
A New Symptom Control Website
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
IAHPC Awards
As Eduardo and Liliana have mentioned in their message, please consider making a nomination to one, or all three, of the IAHPC awards. This is a great opportunity to recognize a colleague, institution or university that is making an important contribution to hospice and palliative care development, leadership, teaching or service. Please don�t put this off, the deadline is nearing!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Meetings
Learn How to Help Families Cope
With Loss During the Holidays
There are two opportunities to attend:
Saturday, November 13, 2pm to 4pm at Community Medical Center (99 Highway 37 West, Toms River, NJ 07109)
For details and registration: Lee Polese at 732-818-6801
And
Sunday, November 14, 2pm to 4pm at Saint Barnabas Health Care System Corporate Offices
(95 Old Short Hills Road, West Orange, NJ 07052)
For details and registration: Spiro Ballas at 973-322-4866, or [email protected]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Humber/Ontario Palliative Care Association
15th Annual Provincial Conference
Palliative Care and End of Life Care
Date: April 3-5, 2005
Taking Place: The Toronto Marriott Eaton Centre Hotel
Toronto, Canada
For further information and registration, contact:
Cindy Abela
Humber College Corporate and Continuing Education
Tel + 1 416- 675-6622 Ext 4020
Email: [email protected]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The American Psychosocial Oncology Society (APOS)
2nd Annual Conference
Date: 27 - 29 January 2005
Taking Place: Wyndham Phoenix in Phoenix, Arizona, USA
Information and registration:
http://www.apos-society.org/meetingsEd/conf05/annual_conference_05.asp
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
NIH State-of-the-Science Conference on Improving End-of-Life Care
Sponsored by the National Institutes of Health - Office of Medical Applications of Research
Date: December 6-8, 2004
Taking Place: Natcher Conference Center
9000 Rockville Pike Bethesda, MD 20892 USA
The conference is free and open to the public.
Pre-registration is recommended. Visit http://consensus.nih.gov/
Continuing Medical Education (CME) credits
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
****Thanks to all contributors to this issue.****
Ways to Help IAHPC Financially
Subscribe & Save Up To 80% on popular magazine subscriptions while helping the IAHPC! Over 80,000 titles to choose from. Click Here to learn more!
Make a donation
http://www.hospicecare.com/donate/donate.htm
Become a member, or sponsor a member, using the link below
http://www.hospicecare.com/join.htm
Buy books from within our On-line Bookshop
http://www.hospicecare.com/Bookstore/
Purchase items from www.wellspent.org using the link below
http://www.wellspent.org/Causes/CauseInfo?c=1050
William Farr, MD IAHPC Newsletter Editor Bob Child Distribution Manager
www.hospicecare.com