| Odoslal: | Martin Rusnak |
| Dátum: | March 05, 2000 o 09:25:10 |
| Subject: | The International Association for Hospice and Palliative Care (IAHPC) |
March 3, 2000
Dear IAHPC Members and Colleagues:
We are pleased to announce the publication of the International
Association for
Hospice and Palliative Care's first Newsletter.
This is the 'text only' copy of the Newsletter. The website version
will be
posted shortly on IAHPC’s new website.
_______________________________________________________________________
The Table of Contents:
Chairman, Dr. Roger Woodruff, announces the IAHPC organization's first
newsletter dedicated to sharing palliative care information worldwide.
Dr. Bette Michael, Executive Director, discusses the new organization.
Nils Mageroy, IAHPC Board Member (Norway), discusses palliative care
initiatives in his country.
Dr A Munkhtaivan, Director of the Mongolian National Cancer Center,
discusses
palliative care initiatives in Mongolia.
Dr. Marco Tullio de Assis Figueiredo, Sao Paulo, Brazil (IAHPC Board
Member)
discusses new trends in palliative care in Brazil.
Funding Initiative in Easter Europe are announced by the Open Society
Initiatives. Deadline for application April 15, 2000.
The Medical College of Wisconsin and The Robert Wood Johnson Foundation
wish to
announce the launching of a new Web site designed to be the central
repository
of peer_reviewed end_of_life educational materials for physician
educators.
Book Review: OUTRUNNING YOUR SHADOW _ CARING FOR DYING PARENTS written
by:
Fred Hill. Reviewed by Janet L. Jones, RN, BSN, FAAMA, President/CEO
Alive
Hospice, Nashville, TN, USA; IAHPC Board Member.
Feedback is important to us!
Dues 2000 project is discussed.
Sign up new recipients of this newsletter to be delivered by e_mail
each month.
If you are receiving this newsletter, do nothing.
Join us on April 1, 2000 for the next issue of the IAHPC News On_Line.
Sincerely,
Roger Woodruff, MBBS, FRACP (Australia)
William Farr, Ph.D., M.D. (USA)
International Association for Hospice & Palliative Care
Newsletter, Vol 1, No 1, March, 2000
Chairman's Message, Roger Woodruff, MBBS, FRACP (Australia)
Welcome to the first Newsletter of the International Association for
Hospice
and Palliative Care (IAHPC). This is a new organisation that is
dedicated to
the development and the improvement of palliative care world_wide.
IAHPC recognises that millions of people die with unnecessary pain and
suffering that could be helped or prevented by palliative care. IAHPC
aims to
work with existing associations and agencies, as well as individuals,
to
improve communications and access to resources, as well as to foster
opportunities in education and training.
IAHPC believes that each developing country should be encouraged and
enabled to
develop its own model of palliative care provision, taking advantage of
the
experience and professional expertise accumulated in developed
countries, and
not be expected to copy models more appropriate to affluent countries.
The IAHPC Newsletter includes news and information regarding the
development of
palliative care in various countries around the world. I encourage you
to send
in articles, however short, describing what is happening in your town
or
country, your triumphs or problems. Fostering communication amongst
the
palliative care community around the world can only be beneficial.
The IAHPC Newsletter is available to anybody with e_mail access. If
you have
colleagues who are interested in the development of palliative care
internationally, get them to send their e_mail address to:
wmfarr@aol.com
*****************
There have been a number of important articles about palliative care in
general
medical journals in the last few weeks, that provide food for thought
and
reflection on how we practise palliative medicine.
Susan Block (Ann Intern Med 2000; 132: 209_18) reviews the assessment
and
management of depression in the terminally ill patient. The challenges
inherent in the diagnosis of depression in the terminally ill are
discussed and
the importance of psychological over the somatic symptoms emphasised.
Psychological and pharmacological therapy are discussed and it is
recommended
that clinicians should have a low threshold for treating depression in
terminally ill patients. Are we attributing symptoms to the normal
sadness and
existential distress of the dying process and missing treatable
depression?
Christakis & Lamont (BMJ 2000; 320: 469_73) studied the accuracy of
doctors'
survival estimates for a large number of terminally ill patients
admitted to
outpatient hospice in Chicago. Only 20% of predictions were accurate
and 63%
were over optimistic. Overall, doctors over estimated survival by a
factor of
5.3. Interestingly, there was a relationship between the degree of
over
estimation and the duration of the doctor_patient relationship. The
discussion
and the accompanying commentaries emphasise the many ways in which
inaccurate
prognostication may compromise the quality of remaining life. We often
complain about the denial of patients and their families, but are we
sometimes
guilty too.
Ganzini et al (NEJM 2000; 342: 557_63) report on physician's
experiences with
the Oregon Death With Dignity Act. In a group of 68 patients
contemplating
assisted suicide who received at least one substantive palliative
intervention
(such as control of pain or other symptoms), 46% changed their minds
about
assisted suicide, compared to 15% of those not receiving a palliative
intervention. Surely a reason to advocate more palliative care.
Rhymes et al (JAMA 2000: 283: 1061_3) discuss the withdrawal of
interventions
in chronically ill patients. The following article by Edmund
Pellegrino
'Decisions to withdraw life_sustaining treatment _ A Moral Algorithm'
(JAMA
2000: 283; 1065_7) is a concise, clearly_argued essay that is a
must_read. One
wonders whether the clinical decisions one makes on ethical grounds
might not
sometimes be superficial.
The apparent increase in palliative care_related papers in the general
medical
journals is gratifying and is a another step in spreading the word
about
palliative care.
____________________________________________________________________________
_____________________
Executive Director's Message,
Bette Michael, EdD
INTERNATIONAL ASSOCIATION FOR HOSPICE & PALLIATIVE CARE
We are pleased to announce that we are now a new non_profit charitable
organization, The International Association for Hospice and Palliative
Care
(IAHPC), incorporated in the State of Michigan in late 1999. An
application has
been filed to establish this organization as a 501 (c)(3), 509(a)(2)
charitable
organization.
Most of the Board of Directors has served on the Board of IHIC, a
Virginia
Corporation, also a non_profit charitable organization. Under that
organization, travelling fellowships were created, and many working
relationships forged. The intents and purposes of IHIC are, in many
ways,
mirrored in IAHPC. Despite the similarities of purpose, however, IAHPC
is not a
legal successor to IHIC, nor are the two organizations linked in any
way. The
IHIC organization is being dissolved.
Information about Travelling Fellowships and other IAHPC programs, and
additional promotional materials, will be made available in the near
future.
We welcome our members and friends to IAHPC!
MONTREAL NEWS
Members as of 31 July 1999 have received a copy of the preliminary
program for
the 13th International Congress on Care of the Terminally Ill,
September 25_29,
2000 in Montreal, Quebec.
I am pleased to report that we have now confirmed two IAHPC workshop
sessions
to be held on Tuesday 26 September, and Wednesday 27 September. Each of
our
sessions will run from 14:00 _ 15:15.
Speakers are our own member colleagues, whose names you will surely
recognize:
Wendy Jones, Bruno Gagnon, Susan Volker, Young Hong, Marie Coughlan and
Derek
Doyle. The speakers will share how they and their colleagues are trying
to meet
the growing need for palliative care in Russia, Colombia, Saudi Arabia,
Mongolia, and India. Derek's lecture will offer "The Essence of
Palliative
Care".
There will also be a general membership meeting and a meeting of the
Board of
Directors. Precise dates and times have not yet been negotiated. We'll
keep you
informed.
A second Congress mailing with further program details is planned for
April.
Watch for it. If you haven't registered yet, you'll want to do so
before 15
March ($US465). After 15 March, the registration fee is $US535. Mention
that
you are an IAHPC member when registering. Form and payment should be
sent to:
Events International Meeting Planners, Inc.
759 Victoria Square, Ste. 300, Montreal, Quebec, Canada HEY 2J7
Telephone: 514_288_7921; Fax: 514_288_7945;
email: info@eventsintl.com
DUES 2000 PROGRAM
Contributions were welcomed in February from Nell Muirden, Jan Phillips
and
Helena Metzger. Thank you all. Two more physicians from Cambodia and
Uruguay
have now been awarded financial memberships for the year 2000, as a
result of
your generosity.
It is not too late to contribute. We have many more requests for
financial
sponsorship than we are able to grant.
____________________________________________________________________________
________
Palliative Care in Norway,
Nils Mageroy, MD, IAHPC Board Member
I will attempt to present a concise history of palliative care in
Norway and a
description of the current situation. Since our Minister of Health came
into
office a little over two years ago hospice/palliative care is
developing in a
more organized way.
The Franciscans in Oslo introduced the hospice movement to Norway in
1977. They
started a home care program, which continues to operate today. Around
1980,
advisory groups for "care at the end of life" were established at two
university hospitals and since then others have embraced the concept.
In 1984 a
public committee was formed on care for "the seriously ill and dying".
The
committee's document, I believe, had an important impact on the
interest of
healthcare personnel in the care of the dying. It did not seem to lead
to any
significant change within the health care system. Health care
professionals and
others have kept the concept of hospice care "warm" by establishing
national
and Nordic conferences, and a journal. In 1993_1994 there was a small
economic
breakthrough as The Storting (parliament) gave small amounts of money
to three
programs that were developing palliative care in Norway's three largest
cities:
Oslo, Bergen and Trondheim. A palliative care ward was established in
Trondheim, a day care program in Oslo and a home care program in
Bergen.
Shortly after he came into office in 1997 our Minister of Health,
Dagfinn
HEybrFten, made it clear that he wanted to support the development of
palliative
care in Norway. A committee was appointed by "The Kings resolution" in
February
1998 and the committee presented their report to the Minister in
January 1999.
The committee based their recommendations on the ethical values of
equal
dignity and the care and respect for all individuals without regard to
their
background. Additionally, it went on that in our national program the
hospice
philosophy of care should be our basis for consulting and focus on the
needs of
the patient and family. Finally, palliative care programs should be an
integral
part of the health care system at the primary, secondary and tertiary
levels.
Following the committee's recommendations, the government first decided
to
establish Centers of Excellence for Palliative Care in each of our five
health
care regions (Norway has a population 4.5 million). These centers will
be
established in the year of 2000. In Western Norway (Health Region III)
the
center will have as its main task to support health care workers that
are
involved with patients in need of palliative care. The center will
coordinate
education, develop teaching programs, standardize patient
documentation,
stimulate and support research. This center will have a special
organization
with headquarters located in Bergen. It will include a group of
multidisciplinary clinicians from all over the region who will work
part_time
in the center and the remainder of their time in hospital and primary
care.
They will serve as local promoters of palliative care.
The Centers of Excellence will hopefully promote the principles of
palliative
care within our health care system, and at the same time provide for
the
further development of palliative care in Norway. At the local
community level
we hope to establish groups of health care professionals who will
improve on
the knowledge base of palliative care. At the hospital level, we now
have two
wards that are designed to provide palliative care. There are new
initiatives
on the way. We have developed an extensive research program in
Trondheim and
hopefully the academic interest in palliative care will increase in the
other
health regions as well. Ultimately we hope to have a positive impact on
the
teaching of medical students and others. What is most important however
is that
the seriously ill and dying feel cared for because their needs are met
in a
skillful way and their families are supported.
Sunniva Hospice, Diakonissehjemmets Sykehus Haraldsplass
5009 Bergen,Norway
____________________________________________________________________________
_____________________
Palliative Care Initiatives in Mongolia
Dr A Munkhtaivan, Director of the Mongolian National Cancer Center
Planning is nearly complete for an IAHPC Travelling Fellowship to teach
in
Mongolia later this year. Some extracts from the background information
provided by Dr A Munkhtaivan, Director of the Mongolian National Cancer
Center
(MNCC), are presented here.
The health care system for the past 65 years has been almost totally
hospital
based. Palliative care is now being addressed, but presently there is
no
national policy. The Mongolian Government is currently developing a
national
cancer program policy and strategy.
Rapid political and economic changes within the country have caused
increases
in social problems and morbidity. Mongolia is a large country with a
small
population of 2.3 million. Forty_five percent of the people live in
rural areas
and the poor infrastructure makes travel difficult. Thirty_eight
percent of
the population is below 15 years of age.
Cancer Prevalence 1994_98 ( provided by MNCC )
Diagnosis Number of patients Percent
Liver cancer 943.0
36
Gastric cancer 394.2
15
Lungs cancer 316.0
11
Esophagus cancer 255.6
10
Corvix uterine cancer 198.0
8
Others 523.4
20
TOTAL 2631
100
The high incidence of cancer of the liver varies according to the
locality,
however the most frequent causes are: hepatitis, poor nutrition and
alcoholism.
Alcohol consumption is estimated at 12 to 14 liters per person per
year.
Mongolia consists of 21 aimags or state units. The oncology and
palliative care
services are provided by several organizations, each with their own
administration and reporting system. They are: the Mongolian National
Cancer
Center, Mongolian Cancer Society, the Oncology Department of the
National
Medical Research Institute, a new Palliative Care Unit at the MNCC,
oncology
cabinets in 5 city districts and all aimags.
A palliative care unit was established this year at the MNCC. There are
6 beds
with the number to increase in the near future. An oncopsychologist, an
oncopsychiatrist and an oncologist staff the unit.
Opioid availability complies with the UN and WHO resolutions and the
Single
Convention. However, we do have problems with cancer pain relief
because there
is no national policy, and many health workers, administrators and the
public
are not informed that cancer pain can be relieved. Additionally, there
is a
fear that opioid use will produce psychological dependence and abuse.
There is
also a shortage of financial resources and trained personnel.
We look forward to learning more about palliative care, symptom
management, the
holistic approach to patient care, developing teaching programs for
health
workers, the psychological aspects of cancer, research on new opioids
and
analgesics, improving opioid availability and pain evaluation.
____________________________________________________________________________
_____________________
NEW TRENDS FOR PALLIATIVE CARE IN BRAZIL
Dr. Marco Tullio de Assis Figueiredo, Sao Paulo, Brazil, IAHPC Board
Member
The biannual of 1998_99 brought three new events to the Palliative Care
(PC)
panorama of Brazil. With a population of 160 million and 100,000
persons dying
of cancer in 1995 (last official statistics), the country now has only
19 PC
units dedicated to the care of terminal cancer patients. In 1994 there
were 10
units, a number that has almost doubled in 5 years. However promising
this
number is, it is still small.
Event number one was the inauguration of the first PC unit in Brazil
dedicated
to the care of advanced cases of AIDS at the Instituto de Infectology
Emilio
Ribas (see IHIC News On_Line, Vol 1, No 3, August 1999,
http://www.hospicecare.com/Newsletters/august1999/page8.html). Dr.
Elisa M.
Aires directs a staff of 4 physicians, 6 registered nurses, 2 auxiliary
nurses,
two social workers, two nutritionists, two occupational therapists, two
pharmacists, two psychologists, three evangelic ministers, one catholic
priest
and one catholic volunteer. The psychological and spiritual staff have
10 years
of experience in the attendance of terminal AIDS patients. Other
members of the
team have been provided one year of special training. Dr. Aires is very
optimistic about the progress of the unit and believes that after July
2000 the
unit will be able to receive medical students for a two_week full_time
visiting
period. I am sure that this will be of great help in modifying the
attitudes of
the future physicians towards human suffering and death.
The second event was the foundation of the Associcao Brasileira de
Esclerose
Lateral Amiotrofica (Brazilian Association of Amyotrophic Lateral
Sclerosis) in
Sao Paulo. Among its principal objectives is the development of a PC
unit. The
unit will be run by the Universidade Federal de Sao Paulo_Escola
Paulista de
Medicina [UNIFESP_EPM] (Federal University of Sao Paulo_Paulista School
of
Medicine). Dr. Marco Tullio de Assis Figueiredo was invited to
participate as a
staff member in charge of the PC unit. Since we do not have previous
experience
in this area, a register of patient/families was initiated.
Additionally, a
program of close contact is being prepared that will enable staff to
learn
about the intimate problems and anxieties that afflict patients with
ALS and
their families. Since neurologists and nurses are not familiar with how
to deal
with the process of dying of these patients, this approach seems best.
Competence, solidarity, compassion and humbleness is the staff's motto.
The third event was the establishment of an Elective Discipline of
Palliative
Care in UNIFESP_EPM, as proposed by Dr. Figueiredo. This discipline is
for
first and second year medical students. It is a multi_professional
teaching
program, is of 24 hours duration, and attendance is limited to 20
students. It
covers the history and philosophy of hospice/palliative care,
treatment of
pain and other symptoms, communication with the patient and family, and
includes the supporting actions of nurse, social worker, psychologist,
physiotherapist, occupational therapist, nutritionist, pharmacist,
spiritual
assistance, volunteers, etc. There are classes on thanantology,
bereavement,
support of the elders, discussion of clinical cases; discussion on
ethics,
physician_assisted suicide versus PC; and visits to PC units. At the
end the
discipline, students are asked to evaluate the program, and to advance
suggestions. The students enjoyed the discipline so much, that they
spontaneously declared that this discipline should be obligatory to all
medical
students.
____________________________________________________________________________
_____________________
Funding Initiatives: Palliative Care in Eastern Europe
The Open Society Institute has announced a new program initiative on
PALLIATIVE
CARE IN EASTERN EUROPE. Seven areas will be funded: PALLIATIVE CARE
RESOURCE/TRAINING CENTER ; PALLIATIVE CARE REGIONAL EDUCATION PROGRAMS
;
PALLIATIVE CARE NATIONAL EDUCATION PROGRAMS ; REGIONAL MEETINGS OF
POLICY
MAKERS ; PALLIATIVE CARE SCHOLARSHIPS; PALLIATIVE CARE TRAVEL GRANTS;
EDUCATIONAL MATERIALS
Applications will be accepted from the following: University, medical
or
nursing school faculty members, Hospice or Palliative Care Program
Directors,
Hospice or Palliative Care Organizations or Associations.
Applicants must be recognized leaders in their institutions or
organizations
and must be able to demonstrate their ability to make change within
their
institution or organization.
Applications will be accepted from the following countries:
Armenia,Azerbaijan,
Belarus, Bosnia_Herzegovina, Bulgaria, Croatia, Czech Republic,
Estonia,
Georgia, Hungary, Kazakhstan, Kyrgyzstan, Latvia, Lithuania, Macedonia,
Moldova, Mongolia, Montenegro, Poland, Romania, Russia, Serbia,
Slovakia,
Slovenia, Tajikistan, Uzbekistan, Ukraine, Yugoslavia.
For more detail and the application form go to:
http://www.soros.org/death.html or Click the URL.
Proposals are due by 5 pm , April 15,2000
____________________________________________________________________________
_____________________
New Web Site contains EOL Educational Materials
The Medical College of Wisconsin and The Robert Wood Johnson Foundation
wish to
announce the launching of a new Web site designed to be the central
repository
of peer_reviewed end_of_life educational materials for physician
educators.
This site, part of the End_of_Life Physician Education Resource Center
http://www.eperc.mcw.edu , currently has a bibliography of key
references for
EOL educators, list of training opportunities, funding, calls for
proposals and
the ability to submit your EOL instructional materials for peer review.
As
materials are
accepted, we will post abstracts which visitors may search by level of
learner and subject matter area. Physicians and residents are
encouraged to visit the site and submit their materials for peer
review. Accepted materials will be posted by early summer 2000.
____________________________________________________________________________
___________________
Book Review
OUTRUNNING YOUR SHADOW _ CARING FOR DYING PARENTS written by: Fred
Hill
Reviewed by Janet L. Jones, RN, BSN, FAAMA, President/CEO Alive
Hospice,
Nashville, TN, USA; IAHPC Board Member
All of us in Hospice and Palliative Care know one of the most difficult
and
rewarding experiences in caring for the dying is that of the 24 hour
caregiver. It may be the spouse, the children, the parents, or someone
else
blessed with the ability and willingness to accept the challenge. The
author
of this book did just that. My review will address writing style and
format as
well as content.
Style and format
I found the writer's style to be easy to read with some eloquent
references to
other authors including, Thomas Wolfe, Bob Dylan, William Shakespeare,
Dame
Cecily Saunders, Maggie Callanan and Pat Kelley, and Dorothy, from the
Wizard
of Oz. Mr. Hill uses others works to punctuate his own very personal
story and
does so quite eloquently. The book is divided into four sections and
is 21
chapters in length. It is a quick read but one that could be used as a
reference during a caregiver's journey.
Content
The story is one so familiar to so many yet unique in many ways.
Mr. Hill's father experiences a stroke which leaves him unable to care
for
himself. His mother becomes the caregiver to his father until she is
diagnosed
with Lung Cancer metastisized to the brain. Mr. Hill and his wife leave
their
home and jobs to move to Indiana to care for his parents. This in
itself is an
unusual journey that most people do not commit to. The first part of
the story
tells of the difficulties and rewards the family experiences during the
beginning of Mr. Hill's mother's illness. One of the things that
struck me
was the straightforward attitude about the good and the bad. Mr. Hill
does not
appear to attempt to portray himself or his parents as "ideal". He
does speak
of the feeling of "doing the right thing" at least once in his life.
Part two addresses the progression of the disease and the addition of
Hospice
as part of the care team. Mr. Hill discusses the importance of
clarity,
honesty, and the value of the respite offered by the Hospice
volunteers. He
also states that at the time the option of Hospice was discussed he
felt that
it meant there was no more hope. The very real struggles are described
here of
the work of the dying and the private way in which that work was
accomplished.
Part three deals with the imminently dying process and the eventual
death.
Struggles such as failure to eat are described. His sense of fear and
trepidation are described. The realities of final arrangements and
obituaries
and feelings surrounding them are addressed as well as the grief work
which has
begun.
Part four is where the Hill's do it all over again! Mr. Hill's
father's health
declines and for the next year he remains the caregiver. One of the
more
poignant themes has to do with the role reversal of becoming the parent
to the
parent yet the son "parent" would do it all again! As he states, "It's
my
job."
The conclusion of the book asks others to send in their stories and
experiences. Although most caregivers I have known have not given up
their
jobs to be full_time caregivers many have experienced the feelings that
Mr.
Hill describes. He also has some practical descriptions _ he does not
give
advice.
I would recommend this book to persons caring for loved ones who are
dying,
especially for children of dying parents. I believe that much of what
is
described is commonly felt but seldom shared. I applaud Mr. Hill for
his
courage to tell his story and share the "good" the "bad" and the "ugly"
for
they are all a part of a life well_lived!
Book Information:
ISBN 0_9673667_0_4 and the publisher is VanMeter Publishing, P.O Box
1268,
Jeffersonville, Indiana 47131. Publisher's web page is
www.vanmeterpublishing.com. Fred Hill's homepage is
www.comports.com/fredhill.
____________________________________________________________________________
_____________________
Journal Subscription Discounts for IAHPC Members
We are in the process of contacting all journals that give IAHPC
members a
discount in order to verify rates for 2000. Once we have received all
of the
updates, we will publish this information on our Web site.
____________________________________________________________________________
_____________________
The Cherny Database: A complete bibliography of past and present
references
developed by Dr. Nathan Cherny of Israel is available for easy searches
directly from the site. Unlike a previous version, there is no need to
use
special software to access the database. It is updated monthly. To
learn move
about this extensive database and how to access it click on
http://cherny.roxanelabs.net/
____________________________________________________________________________
_____________________
Thanks to all contributors to this issue.
____________________________________________________________________________
_____________________
Members have you changed your e_mail address lately?
In order to stay in touch about programs, the IAHPC's News On_Line
publication
date, and other membership issues we need to know your CURRENT e_mail
address.
Send it to the Editor (wmfarr@aol.com) for inclusion in the mailing
list. We
will not share your address with anyone. Thanks!
____________________________________________________________________________
_____________________
Contact Us! Provide Feedback!
Feedback is important to the evolution of the monthly IAHPC On_line
News. To be
an effective means of communicating with our colleagues regarding the
progress
and problems with the implementation of palliative care in developing
countries
and elsewhere, we solicit your comments and criticisms, as well as
contributions. Simply click here to e_mail the Editor. Contributions
to the
On_Line News will be considered for inclusion in subsequent editions.
Each
should be about 500_750 words and sent within the body of the e_mail
text or as
a Text Only attachment ! If you wish to send comments by mail, send to:
William C. Farr, Ph.D., M.D.
6528 NDCBU, Taos , New Mexico 87571 USA
or Fax: 505_751_4202 or E_mail: wmfarr@aol.com
It is clear that an increasing number of palliative care professionals,
even in
remote areas have Internet access. Some however do not, and we look to
you as
readers and members for help. Make copies of this Newsletter and send