International Association for Hospice & Palliative Care

International Association for Hospice & Palliative Care

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IAHPC Hospice and Palliative Care Newsletter

 

2005; Volume 6, No 5, May

 

What's New

In Hospice & Palliative Care

Many ways to help support palliative care.

Main Index:

IAHPC's Homepage

Message from the Chair & Executive Director:
Kathleen M. Foley, MD
Liliana De Lima, MHA


Article of the Month:
Dr. Ripamonti

Book Reviews:
Roger Woodruff, MD

Notes by IAHPC Traveling Scholars

What's New

Webmaster's Corner:
Anne Laidlaw

Editor's Notes:
Dr. William Farr

Letters to the Editor:
Dr. William Farr

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What's New
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The National Council for Palliative Care (UK)

The National Council for Palliative Care (UK) published its Palliative Care Manifesto for the 2005 general election. All of the major political parties have pledged their support of palliative care.
To read more go to URL: http://www.ncpc.org.uk/newsroom/pcmanifesto_response.html

 

The European Association of Palliative Care (EAPC) Task Force on the Development of Palliative Care in Europe

A request of information:

The EAPC Task Force on the development of palliative care in Europe is seeking contacts to act as “key collaborators” and as “expert informants” to help them gather information on palliative care in the following eight countries:

1. Azerbaijan   3. Kyrgyzstan    5. San Marino    7. Turkmenistan

2. Estonia       4. Monaco        6. Tajikistan    8. Uzbekistan

We aim to explore, assess and comprehensively summarize the current state of the development of palliative care in the 52 countries that constitute the European region.

We gather information on palliative care via a range of research methods, including a systematic review of the literature, an analysis of existing palliative care directories and two surveys. The first survey is conducted amongst “expert informants” and it explores views on the national development of palliative care (qualitative survey). The second one is conducted amongst “key collaborators” and it looks at figures or estimates on the availability of palliative care resources (quantitative survey) in each studied country.

Our ultimate goals are to produce

1) a country by country report for the 52 participating countries

2) an atlas of palliative care developments in the European region

The Task Force plans to disseminate the final results in several ways, including publications in palliative care journals; conferences’ proceedings; presentations, and web-sites. All participating “key collaborators” and “expert informants” will be acknowledged as contributors to the project in all publications, and we hope they will remain as possible “contacts for information” about palliative care in their countries in future researches on the nationwide span of the discipline.

If you would like to contribute to this project or for any further information, please contact:

Dr. Silvia Paz
the EAPC Task Force research assistant
e-mail: silviappaz@yahoo.co.uk
telephone: +34 ­ 964 281933
fax: +34 ­ 964 728214

mail address:
Avenida del Puerto 20, 3 “6”
12100 Castellón (Grao)
Spain

 

The Central and Eastern Europe (CEE) and the Former Soviet Union (FSU)

The Central and Eastern Europe (CEE) and the Former Soviet Union (FSU) Palliative Care Monthly Newsletter may be found at the following URL:
http://www.hospice.hu/newsletter/index.php?page=sub

Their Mission is:

“The goal of this newsletter is to communicate the activities, diversity, challenges and progress being made in palliative care development, to foster networking, communication in Central and Eastern Europe and Former Soviet Union, and also to inform those throughout the world about the regional effort. The ultimate goal is to contribute to the development of care of the patients and families suffering with serious life-threatening illnesses. We can not achieve our goals without your active participation. The Newsletter has been developed by the 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.”

The newsletter is available in English and Russian.

 

THRESHOLD CHOIR

The Threshold Choir honors the ancient tradition of singing at the bedsides of people who are struggling, some with living, some with dying. The voice, as the original human instrument, is a true and gracious vehicle for compassion and comfort.

When invited we visit the bedsides a few times a week in small groups of three or four women and we invite families and caregivers to join us in song or to participate by listening. Our repertoire is chosen to respond to musical taste, spiritual direction and physical capacity and might include rounds, chants, lullabies, hymns, spirituals and classical choral music.

The service is our gift; there is no charge. At times however, we have been given small donations expressing gratitude from families in memory of their loved one to whom we sang. These donations are used to cover ongoing expenses such as printing of brochures and sheet music.

Using Kate Munger’s California Threshold Choir as a model we have prepared a repertoire of simple songs and chants. Our choir which numbers 25-30 members meets every other Sunday afternoon for two hours to practice and learn new songs. A request to sing comes from hospice nurses, social workers, chaplains or family members. We welcome new members in the Medford/Ashland area of Southern Oregon.

In our community we are becoming a viable component of palliative care for hospice and end-of-life programs in home, hospitals, skilled nursing facilities, retirement communities and adult foster care facilities. Our vision includes helping other communities to build their own choirs by assisting them to recruit and train choir members and to connect them with local hospices and end-of-life care givers for patient referrals.

The co-directors bring diversity to the Threshold Choir of Southern Oregon. I’lana Cotton is a musician and educator and Sarah Seybold is a hospice nurse with business and marketing experience.

The Threshold Choir provides opportunities for women to share the gifts of their voices in compassion and truth at life’s thresholds; a sacred, delightful way to build community and be part of a unique, co-created adventure.



I’lana Cotton
9 Monterey Dr.
Medford, Or 97504
541 772 4022
icotton@notimemusic.com

Sarah Seybold, RN
532 Altamont St.
Ashland, Oregon 97520
541 488 3306
sseybold@mind.net                                                                                              

 

News from India

New Hospice Foundation for Cancer patients now established at Hyderabad India.

Message from: Dr. Nagendra
E-mail: nparvataneni@yahoo.com

Hospice is a newcomer to the health care industry. It is a concept developed by the Europeans in 1960’s involves total active care of advanced untreatable and terminal cases at the patients home or in a serene, quiet and comfortable place like an ashram where the patient is admitted when he is dying beyond salvation and where the survival is defined in days and weeks. The various services provided here aim to give comfort, quality and dignity to life. This concept became popular with establishment of over 3000 hospices in U.S.A alone. In India , on the contrary, as in most third world countries, the panorama is entirely different and in no way comparable to the West. The hospice movement, or for that matter palliative care itself, is still in its infancy in India, with only about 7 to 8 hospices in India.

Cancer hospitals are crowded, and preference is given for patients whose disease has a hope for control or curative treatment through surgery, chemotherapy, radiation or combination of the three. Several terminally ill cancer patients, on account of poverty, ignorance and total lack of basic facilities, do not receive the required medical and nursing care. The very nature of the disease causes severe pre-terminal and terminal pain, and unless the required dosages of medicines are administered continuously in the right quantities and at appropriate intervals, the quality of the remaining life of the patient is very low with miserable death associated with severe pain and agony. There are estimated 7 to 8 lakhs cancer patients detected in the country every year, of which more than 80% of patients come for treatment when the disease has spread to regional nodes or beyond. Lack of awareness, inadequate access to proper diagnostic facilities, sub-optimal economics, and fear all lead to a large number of patients presenting themselves at an advanced stage of the disease. It is true that the family structure in India is such that the responsibility of looking after a patient rests with the family, but, to generalize and to assume that every patient has a loving family, caring for him or to assume that every patient has a family is to deceive ourselves. We have studied the types of patients and the reasons for admission to various hospices and are convinced, that there is scope to start many such hospices all over the country. Anyone familiar with India will not question the existence of destitutes and the life they are forced to lead - their plight gets compounded when they are struck with a disease that cripples them so much that they are unable to fend for themselves.

At this newly established Hospice center a team of doctors and counselors will review the case history and advise a course of action for patient and family. The services are absolutely free and include Free-Home Care Service: For patients who prefer to live with their own families, Hospice Foundation of Hyderabad - home care team provides physical and psychological support. The organization consists of a group of dedicated, sincere, trained nurses (who help in dressing wounds, relieving pain, controlling nausea, stoma care and other distressing symptoms) & visiting volunteers (who provide non medical supportive care for individuals and their families). This extended support also includes counseling of family members and training them to look after their loved ones in need. Free Out patient Day Care Center: Patients can also come in on a day-care basis and return home in the evening. Palliative treatment, nursing care, medicines and occupational therapy are provided free of cost along with utmost dedicated support and service from the faculty. Hospice Foundation of Hyderabad welcomes everybody, patients and their families poor and rich alike. It is a secular organization that does not interfere in the religious beliefs and practices of our patients. The mission of Hospice is to help people suffering from extremely advanced cancer to be comfortable, peaceful and free of pain till the last. And, when death comes, every effort will be made that it should come without loss of dignity.

A free inpatient Center is to be opened shortly.

"When all that can be done to care has been done and to no avail, then the focus must shift to improving the quality of life that remains”.

For the needy contact:  Hospice Foundation of Hyderabad

Mother Teresa Charitable Trust,
6-3-456/22, Dwarakapuri colony,
Punjagutta, Hyderabad , A.P. India.
Email:hospice_hyd@sifymail.com
Ph: 040 30911685

 

The National Hospice and Palliative Care Organization awarded a $3.35 million grant.

“The National Hospice and Palliative Care Organization was awarded a grant of $3.35 million from the Diana, Princess of Wales Memorial Fund in cooperation with the Franklin Mint to advance palliative care delivery in sub-Saharan Africa .”

To read more go to URL: http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4561

 

From the International Observatory on End of Life Care

“Dear colleague,

“ South Africa ”

A country report for South Africa was recently posted on the website of the International Observatory on End of Life Care (http://www.eolc-observatory.net/global_analysis/southafrica.htm) The report tells how palliative care began more than 25 years ago in South Africa , led by groups of pioneering visionaries in places such as Cape Town , Durban and Johannesburg . Today, more than 60 organisations belong to South Africa ’s Hospice and Palliative Care Association and provide a wide range of services in different settings. With the help of a clearly defined strategy, the national association intends to establish palliative care provision in each of South Africa ’s 170 health authorities within the next five years. Underpinning the statistical data are voices from 46 activists that illuminate the meaning of palliative care in the South African context.

With best wishes from the Observatory team.

Anthony Greenwood
Information Support Officer”

 

From The Open Society Institute and the International Association of Physicians in AIDS Care

“OSI-IAPAC International Fellowship in HIV/AIDS Palliative Care*

Request for Applications (revised April 5, 2005 )

The Open Society Institute (OSI) and International Association of Physicians in AIDS Care (IAPAC) are pleased to announce a Request for Applications (RFA) open to qualified candidates interested in participating in a one-year joint international fellowship in HIV/AIDS palliative care whose aim is to identify and support faculty clinicians in developing countries who can promote existing models of HIV/AIDS palliative care and advance work around new models for its delivery through clinical, research, educational, or advocacy activities carried out at the fellow’s respective academic institutions. An integral component of this program is individualized professional development whose goal is to enhance the fellow’s ability to develop and implement innovative, interdisciplinary HIV/AIDS palliative care activities within their respective communities.

OSI is a private operating and grant-making foundation based in New York City that serves as the hub of the Soros Foundation network, a group of autonomous foundations and organizations in more than 50 countries. OSI and the network implement a range of initiatives that aim to promote open societies by shaping government policy and supporting education, media, public health, and human and women’s rights, as well as social, legal, and economic reform. The International Palliative Care Initiative began in 2000 to enhance hospice and palliative care activities for patients with life-limiting illnesses in Central and Eastern Europe as well as the Former Soviet Union and in South Africa in 2002. The International Palliative Care Initiative is now expanding to other regions of the world and focuses on professional education, drug availability for pain and symptom management, healthcare policy, and advocacy….”

For details go to: www.iapac.org

 

Reflections on Pope John Paul II from Poznan, Poland

by Professor Jacek Luczak
May be read at URL: http://www.oncology.am.poznan.pl/ecept/

Meetings

Official Satellite Symposium of the 11th World Congress on Pain

“Cancer Pain 2005 Satellite Symposium
Theme: “CONTROVERSIES IN CANCER PAIN”


Location: Cairns, Australia
Venue: Hilton Hotel

Dates: 18 - 19 August 2005
Delegates: Approximately 200

Contact Details:
Cancer Pain 2005 Symposium Managers
PO Box 128
SYDNEY NSW AUSTRALIA 2001
Ph: + 61 2 9265 0700
Fax: + 61 2 9267 5443
Email: cancerpain2005@tourhosts.com.au
Web address: http://www.tourhosts.com.au/cancerpain2005/

 

Supportive Care in Cancer

Sponsored by the Multinational Association of Supportive Care in Cancer (MASCC) and the International Society for Oral Oncology (ISOO)

Date Of Event: June 30 - July 2, 2005

Event Location: Geneva , Switzerland

Congress registration and Information: www.mascc.org

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