KOSISH- India

KOSISH- the Hospice

Mission statement

To provide compassionate, individualized, holistic and supportive care for all patients with life-limiting illnesses, their carers and families.

Service description

Palliative care is still in its infancy in most parts of India, with more than 99% of the population being deprived of its benefits. Availability of resources is a major problem and this factor is compounded by lack of affordability. Accessibility is a major issue in small towns and villages – 70-80% of the population of India still live in villages and small towns. The sad result is that majority die undignified deaths and often leaving the families in a state of prolonged bereavement.

We are pioneering the cause of rural palliative care in the tribal state of Jharkhand & West Bengal in India through our hospice, KOSISH, which is the first NGO in Jharkhand providing palliative care services to the elderly and the terminally ill. We have been providing our services to the community since 2006. Narcotic rules vary from state to state and administrators in most areas consider a low priority issue. Illiteracy, poverty, ignorance are the rule of the day. Most people do not have access to basic health amenities. Care of the terminally ill remains a low-priority issue with them. Death means a mouth less to feed – economics simplified!

Focusing on the available ‘resources’ i.e, addressing the spiritual & psychological needs of the dying, in addition to the physical needs, would go a long way in preventing such ‘undignified’ deaths. We ‘tap’ into these resources and provide the best possible care in accordance with the local social & cultural background.

We provide ‘home care’ for the patients, where our team consisting of a doctor, nurse, and volunteer visit the patients at their homes and address the symptoms in a holistic fashion, providing relief, sustaining dignity & empowering the family in the care of the patient.

In addition, we conduct ‘heath check-up camps’ for the Elderly in villages, for they would find it difficult to access our center…we have coined the term of ‘preventive palliation’ in this context for the Elderly. In providing a holistic nature of care, it is our endeavor to address poverty, as far as practicable.

We distribute ‘used clothes’ to the poor when we conduct camps in the remote villages. This promotes goodwill and trust.

In our endeavor to empower the ‘girl child’, we arranged for the moral education of the village girls in our center by providing them with basic education, food and clothing.

We have also started a system where we have trained a few village women to conduct door to door surveys of the Elderly, asking questions in a holistic manner, and providing a routine check of physical parameters like blood pressure.

We also have constructed a residential ‘Long term care facility for the Elderly & terminally ill’ at Vill.Pindrajhora, Bokaro, which is about 300 km from Kolkata, for providing residential care.

As a part of continuing education, we conduct the Indian Association of Palliative Care certificate course in Essentials of Palliative Care for doctors, nurses & dentists, at our center. We have had many original research published in indexed journals.

We are happy to welcome people interested in seeking ‘clinical attachments’ at our hospice and also offer our expertise in working in resource poor settings.

Contact details:

Kosish- the Hospice

Village: Obra, Thana: Pindrajhora, District Bokaro, Jharkhand, India. 827013.

Email: ratuldam@yahoo.com

Facebook: kosishthehospice, www.kosishthehospice.webs.com

 

Pediatric Palliative Care Symposium 2018- Indonesia

Dear Doctors, Nurses & fellow healthcare professionals,

Pediatric Palliative Care Symposium 2018 (10th October 2018)

Rachel House is proud to announce a major Children’s Palliative Care Symposium to be held in central Jakarta on October 10, in partnership with Cipto Mangunkusumo National Referral Hospital, Ikatan Dokter Indonesia (IDI), Ikatan Dokter Anak Indonesia (IDAI) and Persatuan Perawat Nasional Indonesia (PPNI).

This symposium will bring some of the world’s leading Indonesian and international experts in pediatric palliative care together to discuss how we take the next steps on building a true palliative care ecosystem in Indonesia.

This symposium is for doctors, nurses, health department and government officials and anyone that provide care for children’s living with serious illnesses.

If you would like any more information or to register, please contact Anjani on anjani@rachel-house.org or  +6282114779505. 

 

APHN-Hospis Malaysia: Palliative Care and Cancer Symposium

Dear Doctors, Nurses & fellow healthcare professionals,

Palliative Care and Cancer Symposium (30th September 2018)

We would like to invite interested participants to attend our forthcoming Palliative Care and Cancer Symposium which would be conducted on 30th September 2018.

In many countries, palliative care access remains limited. In national cancer programmes, patients are often referred very late in their disease. There is now significant evidence of the benefits of palliative care in cancer care and it is imperative that palliative care is given greater prominence as part of a country’s cancer control strategy. Cancer pain relief is another cause for concern and many patients, especially in low resource countries, still have difficulty accessing medicines for pain relief.

This symposium will discuss on the evidence for palliative care in pain and symptom control, reducing suffering, meeting patient goals of care and the economic implications for countries in implementing palliative care programmes.

Facilitators for this workshop are:

  • Dr Stephen Connor – Executive Director, Worldwide Hospice Palliative Care Alliance
  • Prof Richard Harding – Director of the Centre for Global Health Palliative Care, Kings College, London
  • Dr Elizabeth Gwyther – CEO, Hospice Palliative Care Association of South Africa
  • Dr Emmanuel Luyirika – Executive Director, African Association of Palliative Care
  • Prof Jim Cleary – Director, WHO Collaborating Center for Policy and Communication in Cancer Care, USA.
  • Prof Julia Downing, CEO, International Children’s Palliative Care Network
  • Prof Cynthia Goh – Chair, Asia Pacific Hospice Palliative Care Network
  • Dr Richard Lim – National Advisor to Palliative Medicine, Ministry of Health, Malaysia
  • Dr Ednin Hamzah – Vice Chair, Asia Pacific Hospice Palliative Care Network 
  • Dr Siow Yen Ching – Palliative Medicine Specialist, Ministry of Health, Malaysia

Registration for the workshop can be done on our website: https://www.hospismalaysia.org/palliativecareandcancersyposium/

For further information, please contact Kai Lee at 03 – 9133 3936 (ext: 207) or email education@hospismalaysia.org

Thank You.

Yours Sincerely

Dr Ednin Hamzah

Chief Executive Officer, Hospis Malaysia

World Hospice and Palliative Care Day 2018 Concept Note

Hello everyone!

The Chinese translation for the World Hospice and Palliative Care Day 2018 Concept Note is now out.

This year’s theme for World Hospice and Palliative Care Day 2018 is ‘Palliative Care- Because I Matter’.

“You matter because you are you and you matter until the end of your life”– Cicely Saunders

A key aspect of this year’s World Hospice and Palliative Care Day Campaign will be to call on governments to listen to people who need or who access palliative care in all national Universal Health Coverage (UHC) schemes. 

To download the full concept note: WHPCDay_2018_Because_I_Matter_concept_note

Remember to register your World Day events at http://thewhpca.org/world-hospice-and-palliative-care-day/add-event

The 18th Council

Top (left to right): Mr Kwan Kam Fan, A/Prof Amy Chow, Dr Masanori Mori, Dr Sue Marsden, Dr Akhileswaran Ramaswamy, Prof Wang Ying-Wei, Prof Kwon So Hi, Dr Chun-Kai Fang, Dr Rumalie A.Corvera Bottom (left to right): Dr Annie Kwok, A/Prof Ghauri Aggarwal, A/Prof Cynthia Goh, Dr Ednin Hamzah, Dr Ong Wah Ying, Prof Enoch Lai Absent with apologies: Prof Yoshiyuki Kizawa, Dr Jeanno Park, Prof Myo Nyunt, Dr Agnes Bausa, Dr Sakon Singha

 

NAME APPOINTMENT MEMBERSHIP (SECTOR)
Associate Professor Cynthia GOH Chairman Co-opted (Singapore)
Associate Professor Ghauri AGGARWAL Vice-Chairman Elected (Australia)
Dr Ednin HAMZAH Vice-Chairman Co-opted (Malaysia)
Dr Annie KWOK Honorary Secretary Co-opted (Hong Kong)
Dr Akhileswaran RAMASWAMY Assistant Honorary Secretary Co-opted (Singapore)
Dr ONG Wah Ying Honorary Treasurer Appointed (Singapore)
Professor WANG Ying Wei Assistant Honorary Treasurer Co-opted (Taiwan)
Professor Myo NYUNT Member Appointed (Myanmar)
Dr Sue MARSDEN Member Appointed (New Zealand)
Dr Agnes BAUSA Member Appointed (Philippines)
Professor Enoch LAI Member Appointed (Taiwan)
Dr Sakon SINGHA Member Appointed (Thailand)
Associate Professor Amy CHOW Member Elected (Hong Kong)
Professor Yoshiyuki KIZAWA Member Elected (Japan)
Dr Jeanno PARK Member Elected (Korea)
Professor KWON So Hi Member Elected (Korea)
Dr Rumalie CORVERA Member Elected (Philippines)
Dr Chun-Kai FANG Member Elected (Taiwan)
Mr KWAN Kam Fan Member Co-opted (Hong Kong)
Dr Masanori MORI Member Co-opted (Japan)

Khon Kaen International Conference in Palliative Care 2018

Scholarships are available for doctors/nurses from countries around the Mekong river to join this conference.

For more information, please visit: http://karunruk.com/

2018 Korean Society for Hospice and Palliative Care Society (KSHPC) Conference

Korean society celebrates 20 years supporting palliative care

By Marita Linkson (APHN Volunteer)

The 2018 Korean Society for Hospice and Palliative Care (KSHPC) conference, held 6 – 7 July in Seoul, South Korea, marked the 20th anniversary of the society. The event was an excellent opportunity for delegates to come together, network, learn and reflect on the history and development of palliative care in Korea over the past 20 years. A celebratory ceremony was held on the evening of the first day.

The event was attended by 640 delegates; mainly local palliative care workers, along with some invited representatives from the South Korean Ministry of Health and Welfare.

Of note was the launch of the first Korean language text book for palliative care. The book was the culmination of two years’ work, with contributions from more than 80 experts.

Also, of note, was the announcement of the KSHPC’s new Mission and Vision.

The diverse program featured seven guest speakers from nearby Asian countries, and topics included:

  • Counselling and communication;
  • National trends in Hospice Palliative Care (HPC);
  • HPC development in Asia;
  • Advances in symptom management;
  • WHO guidance and tools for integrating palliative care into health care systems; and
  • Time trends of palliative care and life-sustaining treatment in US hospitals and its clinical and policy implications.

The Asia Pacific Hospice Palliative Care Network (APHN) Chair, Dr Cynthia Goh, was unable to attend the event in person, but delivered a welcome message by video. Dr Goh spoke proudly of developments in palliative care, acknowledging Korea’s role in the formation of two of the three international organisations representing hospice and palliative care worldwide: The Worldwide Hospice Palliative Care Alliance (The WHPCA); and The International Children’s Palliative Care Network (The IPCN). She also encouraged delegates to plan events for the upcoming World Hospice and Palliative Care Day, a unified day of action to celebrate and support hospice and palliative care around the world, to be held on 13 October 2018 (for more information, visit www.worldday.org). You can view Dr Goh’s full presentation here: https://youtu.be/aeNJOskdPHk

Dr Goh also sent a message to the KSHPC ahead of the event, in which she spoke fondly of her interactions with the society over the years, and expressed her personal congratulations.

‘It is a brave new world out there, and at its 20th Anniversary, I wish the Korean Society of Hospice and Palliative Care all the very best as it takes up the challenges facing palliative care and its development, both within Korea and in the regional and global arena’. Dr Cynthia Goh

You can read her full message here: 

 

Delegates pose for a photo at the Korean Society for Hospice and Palliative Care 20th anniversary conference.

Next Conference

The KHPCS holds its conference twice yearly, in Summer and Winter. The next conference is scheduled to commence on Saturday 1 December 2018, in Kwang-gu City, Korea.

About KHPCS

The Korean Hospice and Palliative Care Society (KHPCS) was established in 1998 and is the national umbrella body for hospice and palliative care in Korea. The Society works to provide education, consultation, and policy development in palliative care; and support for local palliative care workers.

 

For more information about the society, please visit their website at http://www.hospicecare.or.kr, or email hospice@hospicecare.co.kr

Photos courtesy of Korean Hospice and Palliative Care Society (KHPCS)

23rd Congress of the Japanese Society for Palliative Medicine 2018

On 15-17 June, the Asia Pacific Hospice Palliative Care Network (APHN) had the opportunity to participate in the 23rd Congress of the Japanese Society for Palliative Medicine (JSPM 2018) held in Kobe, Japan. It was the first time that the APHN had been invited by a sector to their local conference to set up an outreach booth.

The JSPM 2018 is one of the largest palliative care conferences in the world and this year’s conference theme was “Quality Palliative and End-of Life Care”. In line with the theme, doctors, nurses and researchers from Japan and overseas shared their experiences and expertise during the panel discussions, workshops and plenary sessions. More than 10 well-known palliative care researchers from around the world were invited. The conference provided a platform to promote non-cancer palliative care, to share information about how to organize community based palliative care in a hyper-aging society, research and clinical implementation of Advanced Care Planning (ACP) internationally, particularly in the Asia Pacific Region. This was also the first time the JSPM Annual Congress conference organized an ‘international day’ on the third day of the conference where outstanding world-class experts presented all the sessions in English..

The APHN had set up the booth with posters of collaborative research in Asia to reach out to potential future collaborators.

The booth allowed the APHN to showcase our activities and more importantly, bring to the awareness of thousands of participants the existence of APHN as there are still many palliative care experts in Japan who have never heard of APHN. Hence, the booth served as a stepping stone to raising awareness amongst Japanese palliative care professionals.

Clockwise from left: Joyce with APHN Council members Professor Kizawa and Professor Kim; Joyce with Professor Kashiwagi (1st chairman of APHN); APHN Council member Dr Mori, with colleagues at the booth.

One of the posters described the ongoing APHN research project involving an international survey on Advanced Care Planning (ACP), which we hope will help to lay the foundation for the future development or implementation and research or education of ACP in many Asia-Pacific countries/regions. Dr Masanori Mori stopped by the booth and interacted with some visitors. Through the booth set up and interactions, many people now know about the opportunities for them to contribute towards the improvement of palliative care in the Asia and Pacific region. Through this experience, we have been able to reach out to more people and share about what we do at APHN, which was one of our main goals for this conference.

Professor Kim (middle) with Japanese faculty at dinner

Group photo

A dinner was organized to facilitate networking among the many healthcare professionals and we got to meet and interact with local palliative care colleagues where new friendships were forged.

We would like to thank Professor Yoshiyuki Kizawa for inviting APHN to the conference; it was a truly enriching experience.

APHN Executive, Joyce (left), with participants from Singapore!

APHN Executive, Joyce (right) with Dr Woo Kam Wing from Hong Kong

 

Rachel House- Jakarta, Indonesia

Patient playing with a Rachel House nurse

There are close to 700,000 seriously-ill children in Indonesia. However, right now less than one percent of these children have access to pain relief or palliative care. At Rachel House, we have pioneered palliative care in Indonesia for these seriously-ill children from marginalised communities since 2006. We are driven by the vision that no child should ever have to live or die in pain, and that everyone is entitled to palliative care regardless of income, illness or education.

Patient is playing with a Community Network Palliative Care volunteer

We provide home-based palliative care services across Greater Jakarta to seriously-ill children with Cancer and HIV AIDS, free of charge. This allows the children to live pain-free and in the comfort of their own home, surrounded by family and friends. In addition, we educate and equip medical professionals and empower local communities (overwhelmingly women) with palliative care skills, as well as knowledge to provide care for those in need.

A Rachel House nurse on a home care visit to a patient

Our Clinic-In-A-Box program is Indonesia’s premier palliative care education program for nurses and allied health professionals, with world-leaders in palliative care designing and delivering the program.

We are working to build the palliative care ecosystem across Indonesia to make a sustainable change to the country’s healthcare system – and we welcome any partners International or National to join us on this journey.

 

To find out more, please visit: https://rachel-house.org/

APHN-Hospis Malaysia: Pain & Symptom Management Workshop

Dear Doctors, Nurses & fellow healthcare professionals,

Palliative Care Workshop on Pain & Symptom Management (22-24 September 2018)

We would like to invite interested participants to attend our forthcoming 3-day Palliative Care Workshop which would be conducted from 22-24 September 2018.

One of the core areas in palliative care is the ability to assess and manage common symptoms that affect patients with cancer and other serious chronic illnesses. It is extremely difficult to manage the psychological aspect and other issues if patients are in severe pain and are experiencing other distressing symptoms.

This workshop will focus on the management of pain, other physical symptoms and address issues on psychological distress so that patients are given the opportunity to live the rest of their days with meaning during their end-of-life stage.

The workshop will be conducted in English and facilitated by:

  • Associate Professor Dr Ghauri Aggarwaal- Consultant of Physician Palliative Medicine
  • Dr Jan Maree Davis- SESLHD Area Director Palliative Care Service
  • Dr Ednin Hamzah- Chief Executive Officer of Hospis Malaysia
  • Dr Lim Zee Nee- Palliative Care Physician
  • Dr Siow Yen Ching- Palliative Care Physician

It focuses on small group settings and will be most beneficial to those working in a Palliative Care and Oncology setting.

Registration for the workshop can be done on our website: https://www.hospismalaysia.org/painandsymptom/.

For further enquiries, kindly contact Kai Lee via telephone: 03 9133 3936 (ext: 207) or email education@hospismalaysia.org

Thank You.

Yours Sincerely

Dr Ednin Hamzah

Chief Executive Officer, Hospis Malaysia

Internship opportunities at APHN

APHN Executive (far right) with faculty and participants from the EPEC-Paediatrics Workshop in Malaysia 2018

Dear friends

Are you keen to work for a regional palliative care organisation? Do you know of someone who has a passion for palliative care and non-profit? Do you like to interact with people from other countries?

If yes, we are looking for you! The APHN is opening applications for a 6-month internship, with a possibility of converting to a full-time position at our Singapore office.

Click here to read the job description of the intern. We do not pre-set any requirements for application as we review all applications holistically. However, it will be good if you have experiences working or volunteering in the healthcare and non-profit sector, related qualifications (e.g. in Finance, Communications) and a good command of the English language.

If you are keen to apply, please send in your CV to Joyce at aphn@aphn.org.

For enquiries, you may call +65 6235 5166.

We look forward to having you on board the team!

Note:

  • Due to employment regulations in Singapore, for non-Singaporean nor PR applicants, please check and let us know if you require a work permit in order to work in Singapore
  • Only shortlisted candidates will be notified.
  • Our current internship application cycle has closed. The next cycle will begin in January 2019.

 

 

Neglected Suffering, the unmet needs of palliative care in Cox’s Bazaar, Bangladesh

We will like to thank Dr Megan Doherty for sharing this report with us.

Taslim was a 4-year old girl in Cox’s Bazar refugee camp, Bangladesh, suffering from eye cancer. When her cancer first appeared, Taslim had surgery to remove her tumour. Initially, it looked like this may have cured her. But just two months later, Taslim developed headaches and pain. Sadly, the cancer had returned and spread.

When our team met Taslim, she was in severe pain. She desperately needed palliative care, including medicine to relieve her pain. But there was no morphine – the best treatment for her pain – available at the local health facility. In desperation, Taslim’s father took her to a distant government hospital. Like the health facility, the hospital could not provide adequate pain relief. Tragically, Taslim died at this hospital only days later without the right care and support that she and her family so urgently needed.

Taslim’s story is not unique. We hear many stories like this of children and adults around the world facing humanitarian emergencies – children and adults who cannot be relieved of the burden of suffering from disease or trauma because of a lack of medicine or supplies, or the absence of health workers who know what care to provide; and families who watch their loved ones in severe distress unaware of how they can help. We know that large numbers of people facing chronic or life-threatening illness go unreached by humanitarian health systems; and many of those who could have been provided essential palliative care and pain relief will die, unreported and uncounted. The imperative to save lives in humanitarian emergencies has often meant that the suffering of those who cannot be cured is neglected or forgotten. This is the distressing reality in most humanitarian crises. The refugee crisis happening right now in Bangladesh is no exception. Palliative care enables patients and their families facing life-threatening illness, with physical, emotional, social or spiritual distress, to be supported in their journey. They can access the right medicines, equipment, and doctors, nurses, social workers and others who are trained in how to help. Solutions exist that we know can aid children and adults to live with greater quality of life, eased from the burden of avoidable pain and suffering.

Over in another part of the refugee camp, Mojidor is a 10-year old Rohingya boy with bone cancer. When he was diagnosed at the camp field hospital, Mojidor and his mother cried all night fearing he would soon die. Mojidor has two little sisters. His father is missing. We found Mojidor in a tent lying on a mat, unable to move or walk because of his pain. In the past, Mojidor was a typical football-loving boy. His nickname was ‘bhuissya’ meaning ‘buffalo’. We started pain treatment, and now Mojidor can walk and even smiles a little. Palliative care has improved the quality of Mojidor’s life and given much needed comfort to his family. Even when there is no cure and it seems like there is little hope, for patients like Mojidor and Taslim there is so much that can and should be done. This imperative is echoed in The Lancet Commission on Global Access to Palliative Care and Pain Relief and the stark statistic that 25.5 million people die with serious health-related suffering that requires palliative care. That a significant health response in Bangladesh has been mobilized in this crisis is commendable. That unrelieved pain and suffering remain a common occurrence should be an incentive to action and a reminder of the enormous benefit palliative approaches can bring.

The Government of Bangladesh, humanitarian agencies and local health workers have a moral and health imperative to invest in policies and programmes that ensure no child or adult lives or dies in severe distress in Cox’s Bazar. Relieving the burden of pain, suffering and anguish associated with disease and illness must be a priority in this humanitarian crisis.

In November 2017, a palliative care rapid situational analysis was conducted amongst Rohingya refugees living in temporary settlements in Cox’s Bazar. This the first assessment of palliative care conducted…read more