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

 

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/

The start of something new – Education in Palliative and End of Life Care (EPEC) – Paediatrics workshop 2018

EPEC-Paeds Workshop 2018

The estimated number of children in need of palliative care at the end of life is almost 1.2 million globally, of which 24% comes from the Southeast Asian Region.[1] There is significant pain and suffering to be addressed, yet paediatric palliative care is largely still developing in this part of the world.

Particularly in Asia, there is a scarcity of training opportunities and limited dedicated resources in this field of work. Recognising this need, the Paediatric Palliative Care Special Interest Group (PPC SIG) of the Asia Pacific Hospice and Palliative Care Network (APHN) partnered with EPEC headquarters in the US to bring its leading training programme at a much subsidised rate to practitioners here.

Small group teaching

This inaugural train-the-trainers programme in Paediatric Palliative Care was jointly organised by  APHN and Hospis Malaysia. It consists of 2 components – an online curriculum, which participants first have to complete beforehand, followed by an in-person training workshop. The latter was held from 18 – 19 May in Kuala Lumpur, Malaysia.

The programme was originally intended for only 40 participants but in just 2 weeks after application opened, more than 70 registrations were received! Due to overwhelming response, registrations closed much earlier than anticipated. Such massive latent demand for PPC related education indeed!

After much deliberation with programme leads, the PPC SIG released more slots for participation. Eventually, 64 professionals from 11 different countries in the Asia Pacific were enrolled.  Over the 2 day workshop, participants soaked in knowledge on how to teach and facilitate classes, discussed clinical challenges with faculty, and exchanged experience with each other. They practically shared stories, laughed and ate together like long lost friends.

Small Group Discussions

An APHN networking group was also created for the class of 2018. Even after the workshop, participants can continue to participate in discussions with the faculty and fellow classmates. One participant even commented, “Now I know where to ask for help if I face any difficulty when I am working at the hospital, even in the middle of the night.” Indeed, no one will ever feel alone or without any support now, even if they are the only paediatric palliative care practitioner in their service!

Our faculty

This workshop would not have happened without the support of supporting partners and advocates. We will like to especially thank our faculty members, Dr Ross Drake (New Zealand), Ms Stacy Remke (New Zealand), Dr Mary Ann Muckaden (India), Ms Jody Chrastek (USA), Ms Karyn Bycroft (USA) and Ms Lee-Anne Pedersen (Australia) for delivering such a wonderful experience in KL.

We thank the Hong Kong Hospice and Palliative Care Foundation Limited for their kind donation to APHN and Hilton Kuala Lumpur for providing us special rates for faculty accommodation.

Tea time!

If you will like to find out more about the next APHN-EPEC Paediatric workshop, sign up to join our mailing list at https://aphn.us8.list-manage.com/subscribe?u=a5b9404e71f8cf038c7cc5f0f&id=9ce5eaa9b0.

If your organisation will like to support us in future runs of this workshop, please write to the APHN Secretariat at aphn@aphn.org or call +65 6235 5166 to find out more!

[1] World Health Organization. (2014). Global atlas of palliative care at the end of life. World Wide Palliative Care Alliance & World Health Organization. http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf

 

 

Palliative Care Updates from Samoa

Submitted by: Ms Alice Every

“Palliative Care in Samoa: Everyone, Everywhere”

The importance of palliative care to improve the quality of life of patients and their families was one of the messages behind the 2018 Samoa Palliative Care Forum, held on the 28th & 29th May and co-hosted by the Samoa Cancer Society and the Ministry of Health.

The forum aimed to help progress the development of a coordinated approach to delivering palliative care within Samoa by creating a platform to hear perspectives from all aspects of service provision and to look at strengths and opportunities. Over 100 people attended from a range of backgrounds, including health professionals, managers, health non-governmental organisations and patients and family and supporting countries including New Zealand, Australia and Fiji.

At the opening, the Minister of Health Tuitama Dr. Leao Tuitama said that anyone who suffers from a terminal illness deserves to die with dignity and minimal suffering. He assured that the Government is committed to improving the level of palliative care in Samoa.

“Since 2010 there has been discussion within Samoa to develop a coordinated approach to deliver palliative care and since this time there have been various training programmes, workshops and plenty of discussions.”

“The ongoing momentum has meant that now in 2018 there is increased knowledge in the broader health community about what palliative care is.”

He said it is regarded as a blessing that Samoans tend to their sick elders with so much pride, however, Samoa was one of the 42% of countries that have no palliative care services at all, acknowledging that “The need for palliative care has never been greater in Samoa.”

As a result of the forum, a working group will be established to begin the important work of developing and implementing National Palliative Care Guidelines for Samoa and integrating them into the existing health system.

APHN Mini Interview Series – Professor Myo Nyunt, Myanmar

This interview is the third of the mini-interview series featuring members of the 17th Council of the Asia Pacific Hospice Palliative Care Network (APHN).

This month, we interviewed Professor Myo Nyunt, the appointed council[1] member from Myanmar. Prof Nyunt is the President of the U HlaTun (Hospice) Cancer Foundation.

How did you come to the palliative care field?

It was very unusual for a pathologist by profession to be involved in palliative care. It was sometime in 1994 when Daw Mya Sanda Tun, daughter of U Hla Tun, came to me for unexplained fever for investigation and treatment. I did a venepuncture and 26 parameter haematological test. In the blood film I found that there were some abnormal cells and further investigations including bone marrow examination revealed acute leukaemia/lymphoma. To cut the story short, she ultimately went to London for further management in view of a bone marrow transplant in 1995. Unfortunately, the transplant failed.  U Hla Tun was very grief stricken and decided to build a hospice in Yangon, Myanmar, in 1998. Since then, I have become an executive member and worked in the hospice over the years until today, where I am the current President of the U Hla Tun Hospice Cancer Foundation. I am currently in charge of the medical affairs of the hospice in Yangon and Mandalay. The Mandalay hospice was established in 2003.

Please share with us more about the hospice work.

We have two hospices, one located in Yangon, and the other in Mandalay. We have resident doctors caring for the cancer stricken patients. Our hospices care for cancer patients that are the poorest of the poor and cases that are beyond treatment. When our patients are unable to afford cycles of palliative chemotherapy, radiotherapy, we do cover the costs for some of them to complete their treatment. We also cover the costs for surgery in some cases. However, we are still mainly providing palliative care services. The staff nurses and nursing aids attend to patients’ various needs. Specialists from various disciplines like medicine, surgery, anaesthesiology, OBGY, dental surgery, clerics and social workers also form part of the team and conduct ward rounds on designated days.

What do you think are the current opportunities and challenges in Myanmar in developing palliative care?

The challenges in Myanmar in developing palliative care are considerable, especially due to the availability of oral morphine and morphine syrup. We now have a pharmaceutical factory which is ready to supply the amount needed for hospices. However, specific procedures are not yet available for the purchase and processing of the medicine. In this area work is still work in progress.

We are glad that we have trained staff who have already attended the training of trainers’ course under the Lien Collaborative for Palliative Care project.

How will you hope to see the APHN collaborating with relevant stakeholders in Myanmar?

APHN has a strong presence in Myanmar involving both the public organisations, like Pain Society, and private organisations like the U Hla Tun Hospice Cancer Foundation, Shwe Young Hnin Si Foundation, the Oncology Society and the Myanmar Medical Association.

The APHN representatives have met with the Minister of Health and officials from the Ministry of Health and Sports. They have also given lectures and hands-on training in Naypyidaw, Yangon and Mandalay. Most of the palliative care doctors and nurses in Myanmar are familiar with them.

In terms of policy, I think we do need to raise more awareness on the subject of palliative care and its necessity. We also need to have better community involvement.

If you were to choose a colour to represent your journey in palliative care, what will it be and why?

The colour I chose will be the evening tide (light purplish blue) colour. The colour is often used by hotels. I feel that it is not dull, yet cheerful and peaceful enough, as if the name implies it is set for a “quiet night’s sleep”. Out of so many philanthropic works, I chose to be an APHN Council member because I hope to be a role model for the younger generation of physicians in Myanmar and incite them to continue in this noble work.

[1]The APHN Council consists of 7 members to be appointed by sectors on a rotation to be determined alphabetically according to the name of the sectors (Constitution 12.2a), 7 elected members, and 6 Co-opted member

Hong Kong 2nd Community End-of-Life Care International Conference

The Community End-of-Life Care International Conference will be held on June 20-21, 2018. Sponsored by the Hong Kong Jockey Club Charities Trust, registration is FREE.

Some of the keynote speakers for this conference are Dr. Stephen Connor – Executive Director, Worldwide Hospice Palliative Care Alliance (WHPCA), Prof. Irene Higginson – Professor of Palliative Care and Policy King’s College London; King’s Health Partners, Director, Cicely Saunders Institute, Prof. David Currow – Professor of Palliative Medicine, Faculty of Health, University of Technology Sydney, Prof. Wang Ying Wei –Director General, Health Promotion Administration, Ministry of Health and Welfare, Taiwan

Find out more at the conference website here.

Travel Grants to 23rd Congress of the Japanese Society for Palliative Medicine

Dear friends

The 23rd Congress of the Japanese Society for Palliative Medicine (JSPM) is open for registration. We are pleased to announce that the JSPM 2018 organizing committee will offer travel grants to overseas participants who would like to submit abstracts as International members, traveling from all parts of the world(country,25 or below at this site) to present high quality papers at the meeting. Only one person per abstract (the presenting author) will be considered for the Travel Grant. Funding for travel will not exceed JPY50,000 per grant, and will be limited to 20 members.

For more information on the congress and travel grant, please visit the website http://jspm2018.umin.jp/english/

I will be going and I look forward to seeing you there!

Joyce Chee, APHN Executive

On behalf of Prof Yoshiyuki Kizawa, APHN Council Member and President of the 23rd JSPM

 

 

25th Annual Conference of Indian Association of Palliative Care

25th Silver Jubilee Conference of the Indian Association for Palliative Care will be held in Delhi, India on 23rd – 25th February 2018.

They have lined up a list of expert speakers from the world and the region, including Robert Twycross, Eduardo Bruera, Julia Downing, Ilora Baroness Finlay, Cynthia Goh, Eric L. Krakauer, Fiona Rawlinson and many more!

More details on the conference and their programme can be found at http://www.iapcon2018.com/index.html

 

APHN-Hospis Malaysia Workshop: Grief & Bereavement Care

This 2-day intense workshop on Grief & Bereavement Care concludes our final series of palliative care workshops for the year.

Associate Professor Amy Chow from the University of Hong Kong together with Dr Gilbert Fan from Singapore, will be facilitating the 2-day course which is designed towards a very interactive and engaging experience. This workshop will be immensely valuable to clinicians, psychologists, social workers  and counselors managing palliative care and care of the dying.

Registration submission can be made online at www.hospismalaysia.org/griefandbereavement/ and emailed to education@hospismalaysia.org.

APHN Mini Interview Series – Dr Masanori Mori, Japan

This interview is the second of the mini-interview series featuring members of the 17th Council of the Asia Pacific Hospice Palliative Care Network (APHN).

This month, we interviewed Dr Masanori Mori, one of the Co-opted members[i] of the Council. Dr Mori is a palliative care physician at Seirei Mikatahara General Hospital, located in Hamamatsu city, Shizuoka Prefecture, Japan.

Challenges in clinical practice and unique approaches

I was trained and practice palliative care in oncology for 10 years, during which, I had faced many challenging problems, but there are two distinct situations I encountered which I will like to share.

The first was providing palliative care for adolescent and young adult patients (aged 18 – 39) when I was a fellow, partly because we were in the same generation. We could provide symptom management, but many of them had severe psychosocial & spiritual pain, especially regarding them having to face early, premature death. I remember clearly a patient asking me in front of his family, “What would you do in my shoes?” It got me thinking. What would I do being in my 30s and facing death? I thought there was no right answer to that, so I had some difficulty when faced with such questions.  We had a good patient-physician relationship. I felt like I was asked the question not only as a physician, but as a person. So I shared a part of my life with the patient, and we had some good conversations. I was sharing what my hobby was, which was “Haiku”, a very short form of Japanese poetry. After he passed away, the patient’s family engraved the haiku poetry I wrote for him on his tomb.

I feel that when we are facing such situations where a patient has significant psychosocial distress, what we could do is to sit down near the patient, try to understand where his or her suffering comes from, and adopt a multidisciplinary approach to discuss how best to support the patient.

The second challenge I have faced was, no matter the improvements in palliative medicine, occasionally we still have difficulty in relieving severe symptoms at the end of life. For example, shortness of breath just before death can be quite difficult to manage even with the use of parenteral opioids. We sometimes do palliative sedation to relieve intractable symptoms like refractory shortness of breath. But before its initiation, it can be difficult to say how much palliative treatment is sufficient enough to say “this symptom is indeed refractory”, even with the best evidence and discussions among palliative care experts. Going forward, we need to improve strategies of symptom management at end of life

One unique approach I can share is that recently, there have been some trends to the early integration of oncology and palliative care in Japan. One of such activities is a “two-physician system” for advanced cancer patients; while a patient is receiving anticancer treatment by an oncologist, a palliative care physician within or outside the institution sees the patient as the other main physician, not as a consultant, alongside the oncologist. I feel that this new, collaborative approach allows for a smooth transition to palliative care, lessening the sense of abandonment felt by patients. However, this practice is still in the pilot stage in Japan.

One thing I hope to do during my term on the APHN Council is to contribute in the area of research. For example, I am interested in cross-cultural studies in Asian and Pacific countries to understand similarities and differences in palliative care practices. Such data could help us appreciate the situations of each country, and lay the foundation for future collaboration.

Life and inspiration

My friends and colleagues are usually surprised to know that I am interested in Haiku poetry because it is not very popular among people of my age. (Haiku poetry is usually popular among older people in Japan.) I have 4 kids, so I also enjoy playing with them.

There were many people who inspired me in my life; my dad and mum, my previous and current mentors in US and Japan, and Dr Shigeaki Hinohara who was one of the founders of the APHN. Many of them share similar characteristics in terms of how to view the world, manage challenges, take collaborative actions, and enjoy life. They all have certain aspects which became my inspiration in one way or another.

For example, Dr. Hinohara’s writings and works are very inspirational. I was so inspired by his altruism, perspectives, and medical and social activities that I visited him at St. Luke’s International Hospital 10 years ago when I was a palliative care fellow in Houston. Dr. Hinohara was 95 years old then. It was about 10-15 minutes when we talked; Dr. Hinohara listened to me, and shared his vision of not only launching a graduate medical school but also ceasing wars worldwide. He left the world at the age of 105 but he pioneered in numerous fields in medicine ranging from preventive medicine to end of life care , as well as medical and nursing education. Moreover, Dr. Hinohara contributed to the entire society by publishing a number of million-seller books such as “Living long, living good”, and initiating something very new such as so-called “Smart Senior Association”.

As a new member, I very much look forward to working with you all at APHN!

By: Joyce Chee, APHN Executive
The article first appeared in the APHN newsletter Issue 34.
All information is correct at time of publishing.
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[i] The APHN Council consists of 7 members to be appointed by sectors on a rotation to be determined alphabetically according to the name of the sectors (Constitution 12.2a), 7 elected members, and 6 Co-opted members.

SG Pall eBook

The Lien Centre for Palliative Care (LCPC) is pleased to launch the SG Pall eBook, a mobile- friendly online resource for palliative care tips. This product arose from a  collaboration between LCPC and a group of specialist Palliative Care practitioners from various institutions across Singapore. The  eBook aims to provide quick and  easy access to basic palliative knowledge (through their mobile phones) for  busy healthcare professionals on the go, and is suitable for all care settings.

Access the SG Pall eBook here!