IAHPC NEWS ONLINE

A New Hospice in Vellore .

In January, the Christian Medical College (CMC) and Snehadeepam (A local Catholic Charity) agreed to cooperate in partnership to build a new Hospice on land owned by the Catholic Diocese on the outskirts of Vellore . The Hospice, which will be owned, managed and run by Snehadeepam and will have a first floor that will house CMC’s Palliative Care Unit. CMC sees this as an opportunity to get Palliative Care into better accommodations and to be able to extend their outreach services to the terminally ill patients in Vellore.

From this unit, Dr.Reena George and her medicl and pastoral team will be able to visit hundreds of families and provide to them support, training and medical attention. Home based support is normally the best way to help terminally ill patients especially where the family is capable and willing to provide assistance once trained. Sadly, some terminally ill patients become outcasts in the family and it is Reena’s team’s job to convince them that the illness is not due to a curse or bad spirits.

I spent one afternoon visiting patients in their homes and was hugely impressed by the quiet but professional way in which support was given. One woman had made an income by rolling small Indian cigarettes (beedis). However she had developed a throat cancer, which Reena believed was due to inhaling tobacco dust since she did not smoke. The family was able to help and pain relief was offered by the medical team through a regular programme of house visits.

Another young boy called Ajju with liver cancer had received radiotherapy, but the cancer was still very active. There was the prospect of more radiotherapy which might give Ajju another couple of months, but he had decided not to have this as the treatment since it had made him feel so unwell. He was at home with his two brothers and his parents and had created some great paintings. The home visits really helped, and the tender sympathetic support he received was inspiring. Unfortunately, the situation was hopeless and Ajju died in February. It would have been better if he could have gone to the hospice and received support there in his last days.

Individual donors have already pledged £30,000 to establishing the Palliative Care unit at the new Hospice. Friends of Vellore will look at opportunities of supporting this worthwhile service.Friends of Vellore, UK works in close partnership with the Christian Medical College in Vellore, Tamil Nadu to encourage the provision of high quality medical service at the Hospital and to facilitate access to it by the widest spectrum of the local population. The Charity, which has been operating for over 50 years, is particularly concerned to promote initiatives aimed at the disadvantaged and deprived and to ensure that everyone can receive appropriate treatment regardless of their ability to pay…..

Reprinted here with the permission of Mr Richard Smith, Director, Friends of Vellore , Flempton Hall, Bury Road , Flempton,  Bury St. Edmunds, Suffolk , IP28

http://fovuk.tripod.com/home.html

Pakistan

Palliative Care Service at the Children Cancer Hospital , Karachi , Pakistan

Dr Shamvil Ashraf
Pediatric Oncologist Children Cancer Hospital
Karachi , Pakistan
[email protected]

About the Children Cancer Hospital

Children Cancer Hospital is the premier facility exclusively dedicated to the care of children suffering with cancer regardless of their ability to pay. This is a project of Children Cancer Foundation, a registered Non-Governmental Organization established in December 1999 by a group of medical professionals, social workers and parents of children suffering with cancer. The unit has out patient clinics, 8 daycare and 14 in-patient beds. The unit provides comprehensive cancer care to all children on active protocol. For more information please visit our website www.ccfpakistan.com.pk

Burden of Palliative Care at Our Hospital

At present we see more than 200 newly diagnosed children annually. About 150 continue treatment at our center. About 10% of these need palliative care from the beginning because of the advanced nature of the disease and the constraint of resources. The available resources are first utilized for the more curable cancers. Around 25% of patients relapse during and after treatment. Most of these again are not offered a second treatment because of the lack of resources. With this background data, it is estimated that at a given time we have 35 to 50 children on palliative care.

Available Services

Once a child is on palliative care most of the parents look for alternative/ complimentary homeopathic or spiritual treatments, but they do come to us for blood tests, transfusion and pain management. Some parents continue treatment with us until the death of the child.

We provide pain medication and supportive treatment to these children, but we do not have:

• Specialized palliative care teams of doctors and nurses

• No psychological or social support

• No Pain control team

• No home care

What We Want To Do

We want to start a palliative care program at our center with a 2­4 bed unit. We would initially like to treat these children at our center with a specialized team of doctors, nurses, psychologist and social workers. During the next phase, we would like to provide home care within Karachi with the help of volunteers and social workers.

What Do We Need?

• Morphine availability

• Other drugs

• Doctors and Nurses

• Social workers

• Child Psychologists

• Volunteers

• Education and training of the Team

What Support Do We Need?

• Education and training of doctors and nurses

• Some funding for transport, salaries, drugs and administrative expenses

(Once we have established the service we can continue with local philanthropy)

Israel

Al-Taj for Health and Heritage is a grass-root organization located in the city of Arraba , Galilee , Israel . It is a registered not-for profit, non-governmental organization founded by multidisciplinary volunteers. Its purpose is to promote people's health and improve the quality of life of diabetic patients through an education center, and it also provides palliative care to cancer patients by a home hospice care team.

Cancer Project Objectives:

1. To ensure public awareness of cancer

2. To increase the rate of health screening in the Arab population

3. To educate about the importance of early detection of cancer

4. To promote palliative care and support for the affected patients and families

Project Goals and Design:

1. To provide training in prevention, early detection, signs and symptoms and the importance of screening.

2. To provide an explanation about the various cancer therapy options: surgery, chemotherapy, radiation therapy, hormone therapy and immunotherapy

3. To print leaflets about cancer and self examination in Arabic

4. To collaborate with local, regional, national and international foundations and institutions dealing with cancer

5. To begin a multidisciplinary team to apply palliative care to patients and families at home

6. To develop a program that will be unique and innovative because it will be run by Arab medical professionals (men and women), who speak Arabic, and distribute leaflets in Arabic

7. To bring the services to the target community, without the need to travel far from home

8. To collaborate with religious leaders (Muslims and Christians) so that they may talk about the above subjects with their people during religious lessons

9. To provide dietitian lectures about the importance of physical activity and healthy food consumption to reduce weight and various risks associated with it

10. To provide programs that include high school students and older persons.

Al-Taj (the Crown) Home Hospice

There is an almost 100% increase in cancer diseases in the Arab sector since 1970. The most frequent types of cancers are the lung in men (high rate of heavy smokers) and breast cancer in women (heredity).

We aim to improve the quality of life for the patients and families by:

• Relieving pain and control symptoms

• Alleviating the physical, emotional, social, and spiritual discomforts

• Restoring the functional capacity and dignity

• Being available for home visits 24 hours a day, seven days a week as needed

• Accompanying patients to social activities and tours escorted by a medical team

• Improving the cost-effectiveness of care, without sacrificing quality of care

• Avoiding inappropriate prolongation of life by artificial means

• Remaining sensitive to personal, cultural, and religious values, beliefs, and practices

• Encouraging the family to stay near the patients, so he or she is surrounded by family members and close friends at home and at the moment of death.

Cancer in Arabs in Israel :

• Cancer is the second leading cause of death in the Arab sector after heart disease.

• The leading cause of death in Arab cancer patients is lung cancer in men and breast cancer in women.

• During 2000, there were 991 newly diagnosed Arab cancer patients (531 men, 460 women). The cancer mortality was 498 patients (307 men and 191 women).

• Breast cancer is a leading cancer in both Jew and Arab women, while in men it is lung cancer in Arabs and prostate cancer in the Jews. The same is true for cancer mortality.

• Between 1980-2000 there was a 45.2% increase in cancer incidence for Arab men and 67.5% increase in Arab women.

• First year survival after breast cancer diagnosis is equal in Arab and Jew women, but 5 years survival is less in Arab women (62.4%) than Jew women (71.4%). This reflects a delay in disease diagnosis and a progressive cancer phase in Arab women.

• Compared to international figures, the incidence of breast cancer among Arab women in Israel is higher than in Eastern countries, but lower than that in the Western countries.

Our unique status:

1. Palestinian citizens living in Israel are 20% of Israel ’s Population. They lack palliative care services resulting in unnecessary suffering due to pain and symptoms.

2. Arraba is a historical city in Galilee, established more than 3,000 years ago and located 30 km north of Nazareth . The majority of citizens are under the poverty line (The average of employment in the different governmental departments for Arabs is 2% ). The average monthly salary is US $750. The unemployment rate is over 12%. The economical rank ­ 2/10 (rated no. 25 out of 210 settlements in Israel ).

3. We are not allowed to receive donations from Arab countries.

4. Governmental support to Arab NGO's is less than 1% of the total donations to local NGO’s.

5. Being a developed minority in an industrialized country, international foundations are discouraged to support our projects.

6. Health funds cut expenditures by reducing screening procedures despite a steady increase in cancer incidence and mortality.

7. There is a lack of educational material in Arabic.

8. Local obstacles: there is a fear of cancer which is referred to as “that disease” without mentioning its name. The majority of physicians and oncologist are male and many Arab women refuse breast examination by male health professionals. Muslims believe that every thing in their life is from God, so they refuse to undergo screening procedures. The myth that if they check, they will find something, causes them to prefer not to initiate medical examinations. A high percentage of relatives marry with heredity consequences. Since procedures cost money, wasting money to examine for something they are not sure exists is a problem. People ask for a doctor’s advice only after suffering for a very long time. This causes a delay in diagnosis and adversely affects the prognosis.

We are seeking support to help us improve our peoples health and the quality of life. Tax-exempt 501 (C) (3): Healing Across the Divides Foundation, USA.

Kassim Baddarni - Chairman

Al-Taj for Health and Heritage

POB 85, Arraba 24945 , Israel

[email protected]

Kerala, India

CARE … The Palliative Medicine Newsletter’

CARE, is a monthly Palliative Medicine Newsletter from the Academic Club, Palliative Care Division, Regional Cancer Centre, Thiruvananthapuram, Kerala, India. The online subscription is absolutely FREE!

The newsletter is aimed at providing updates on palliative medicine to palliative care professionals and includes an overview of the basics of palliative care for beginners. It also encourages discussion on several difficult issues in palliative care and research.

Currently there are four sections for the newsletter: Topic of the Month, Palliative Pearl, Medi Quest and News & Events. In “Topic of the Month”, a topic of relevance to palliative medicine will be dealt with in detail to cover some of the basics and available updates on that particular topic. Palliative Pearl will provide a few important tips / facts that could be of practical benefit to the day-to-day palliative care practice. Each issue of Medi quest will have a question to stimulate the readers to continue learning in palliative care. In subsequent issues, we will have a small discussion about the answers and the names of the winners. News and Events will provide the information on recent events / developments in the palliative care arena. More useful sections and updates are expected soon to make the newsletter even better.

For a free subscription to CARE please send your name, designation, name of the organization and e-mail address to [email protected]

You are also welcome to contribute to any section in the newsletter, which would be gratefully acknowledged. For details and any assistance, please contact me at [email protected].

The Academic Club is a group of persons interested in improving the palliative care services in our region. Academic Club conducts CMEs, training programs, workshops etc on palliative medicine on a monthly basis at the Palliative Care Division, Regional Cancer Centre, Thiruvananthapuram, Kerala, India.

Dr Prasanth C V, Convener,
Academic Club, Palliative Care Division,
Regional Cancer Centre, Thiruvananthapuram, Kerala India