Participate in the Paediatric Palliative Care Survey

PPC SIGDear esteemed colleagues and fellow PPC practitioners,

After a successful service mapping exercise last year, the PPC SIG has conceived a brand new survey!

We aim to evaluate the state of drug availability for management of critical symptoms and study prevailing practice in the treatment of distressing symptoms at the end of life.

Not only would we be able to appreciate the challenges that some of our colleagues face in the course of their work as a result of limited therapeutic options, prevalent and novel methods of pharmacological interventions at the end of life will be revealed.

These important objectives can only be met if you participate, at the same time encouraging other colleagues to also do so by sharing the following link. This is where we need your support!

Ultimately, we have only one goal. As a small but growing regional group, we hope to improve the care of dying children under our care. Thank you ahead for your significant contribution.

The survey can be accessed here.

With much appreciation,

Poh Heng & Lee Ai



Quality of Death Index 2015 Released – Need for palliative care outstrips services

QODThe Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on extensive research and interviews with over 120 palliative care experts from across the world.

It shows that in general, income levels are a strong indicator of the availability and quality of palliative care, with wealthy countries clustered at the top. The UK is top of the list, as it was in the previous index released in 2010. Australia and New Zealand take second and third place, as they did in 2010, while rich European and Asian countries dominate the top 20, along with the US in ninth place and Canada in 11th.

As expected, many developing countries are still unable to provide basic pain management due to limitations in staff and basic infrastructure. Yet some countries with lower income levels demonstrate the power of innovation and individual initiative.

For example, Panama (31st) is building palliative care into its primary care services, Mongolia (28th) has seen rapid growth in hospice facilities and teaching programmes, and Uganda (35th) has made huge advances in the availability of opioid painkillers.

For the first time The EIU has also compared the supply of palliative care – as revealed in the Index – with the demand for such care.

The demand analysis, based on countries’ demographic profiles and the burden of diseases for which palliative care is necessary, shows China to be among the most vulnerable from population ageing and the rising incidence of conditions such as cardiovascular disease, which accounted for one-third of all deaths in the country in 2012.

Many other developing countries will also need to work hard to meet rising future need as the incidence of non-communicable disease increases and their populations grow older.

David Line, the editor of the report, said: “Since the first Quality of Death Index was published this issue has certainly risen up the global agenda, as shown by the World Health Assembly resolution last year calling for improved standards of palliative care across the world.

“But much more can be done, even in countries that rank highly in the Index. It is an issue that will affect us all – a good quality of death should be regarded as a human right.”

The release of the report coincides with World Hospice and Palliative Care Day, a unified day of action organised by the Worldwide Hospice Palliative Care Alliance (WHPCA) and the International Children’s Palliative Care Network (ICPCN) to raise awareness of the need for hospice and palliative care worldwide.

Dr Stephen R Connor, WHPCA Senior Fellow, said: “This new report, released ahead of World Hospice and Palliative Care Day, will help highlight the enormous work that still needs to be done to bring palliative care especially to low and middle income countries where lack of education on palliative care, lack of essential medicines, and lack of government support continue to lead to unnecessary suffering.”

The report can be accessed at Besides the full report, it includes bite-sized country profiles and infographics.

Please feel free to share the findings with your stakeholders to further our collective goal of improving palliative care for communities around the world.

iPDF – International Paediatric Palliative Care Discussion Forum Online Now!

The Asia Pacific Hospice Palliative Care Network (APHN) launched its first paediatric palliative care initiative, the International Paediatric Palliative Care Discussion Forum, abbreviated as the iPDF, on 20 August 2015.

Conceptualized and implemented by the Paediatric Palliative Care Special Interest Group (PPC SIG) of the APHN, the iPDF will be a free resource platform for all paediatric palliative care workers to ask questions and participate in the latest discussions in children’s palliative care, anytime, anywhere online.

How it all started

Many paediatric palliative care workers in the region are working in isolation. Many cannot travel overseas for training and education. They have no one to ask if they run into trouble. Recognising the need to provide a platform that provides reliable help, is readily accessible, free and easy to use, the PPC SIG decided to fill this gap and start an online resource.

More than just a forum

The iPDF aims to become an online community for practitioners from different disciplines who work in the field of children’s palliative care, to provide networking and mutual support. In addition to being an interactive platform, the iPDF is moderated by a multidisciplinary panel of experts. Participants can be sure that their questions will be responded promptly by the relevant content specialists. Everyone can certainly look forward to many fruitful discussions with equally passionate colleagues around the globe, which has not been possible, until now.

Building capacity in a virtual environment

In conjunction with ongoing discussions, additional articles will be released every few months. These articles will include interviews with our moderators, who will share their own perspectives on the latest news and debates. Summaries of the most talked about topics, most shared answers, and further discussion on interesting projects within iPDF will be sent to participants, to keep everyone up to date on the hottest issues in the field.

Moving forward

The iPDF will continue to engage participants through activities built around this platform. We look forward to the iPDF becoming a resource for all paediatric palliative care workers, not just as a knowledge base but also a source of inspiration.

Join us!

Find out how to sign up for the forum at the APHN PPC site!

The iPDF is hosted on the Google platform. If you have a registered Google account, you may join the forum directly here.

The iPDF is an initiative by the Asia Pacific Hospice Palliative Care Network. If you will like to help contribute to the initiative or other activities in the APHN, please feel free to contact Joyce at or +65 6235 5166.

International Paediatric Palliative Care Discussion Forum (iPDF) – Starts today!

Promotional PicDear fellow palliative care colleagues

On behalf of the Paediatric Palliative Care Special Interest Group (PPC SIG) of the Asia Pacific Hospice Palliative Care Network (APHN), we will like to invite you and your colleagues to join us as we launch our very own discussion forum focusing on children’s palliative care.

Support us by sharing this post with your friends and participate!

To join the forum, all you have to do is

1. Sign up for a Google account (if you do not have one)
2.Click on this link!forum/aphn_ipdf!

Our forum is moderated by an international multidisciplinary group of experts which we have gathered to help answer any questions that you may have regarding children’s palliative care.

Click here to find out more.

Invitation to bid – 13th Asia Pacific Hospice Conference 2019


The APHN Council is pleased to invite member organizations wishing to host the 13th Asia Pacific Hospice Conference 2019 to send in their application to the APHN Secretariat.  Closing date for submission of application and bid documents has been extended till 31 December 2015.

Click here to download the bidding document template and the procedure for application.

Please email the bidding document to

Please note to send your file as “Bidding document for 13th APHC_<your organization name>”


APHN calling for volunteer writers for the website and monthly newsletter


Dear palliative care workers and volunteers in the Asia Pacific Region, we are calling for volunteers to contribute your stories to our website and newsletter. We welcome any story that you will like to share with us.

This may include

  • Local news on palliative care developments in your country
  • Reports of  past or upcoming workshops, concerts, events and activities in your palliative care community
  • Stories on your work in palliative care, patient stories,
  • Sharing on what you do for self-care (like baking, going on holidays)
  • Patient cases that you will like to bring up for discussion with other palliative care experts
  • ANY OTHER STORY you will like to share

As long as you have an interest in finding out more about palliative care and have some free time to write, please feel free to drop us an email at  or visit our website to find out more!

If you will like to contribute on a regular basis, we also welcome you to join the APHN editorial team!


Introducing APHN new 15th Governing Council

15th Council

Back row: Mr Kwan Kam Fan, Dr Jeanno Park, Dr Maria Witjaksono, Dr Chun-Kai Fangl, Dr Priyadarshini Kulkarni, Dr Richard Lim, Dr Annie Kwok, Prof Yoshiyuki Kizawa, Prof Satoru Tsuneto, Dr Chong Poh-Heng
Seated: Dr R Akhileswaran, Dr Sushma Bhatnagar, Prof Cynthia Goh, Prof Tetsuo Kashiwagi (Stepped down from 15th Council), Dr Ednin Hamzah 
Absent with apologies: Prof M R Rajagopal, Dr Ghauri Aggarwal, Prof Patsy Yates, Dr Yvonne Luxford, Prof Hyun Sook Kim, Dr Jun-Hua Lee

Associate Professor Cynthia Goh Chairman Elected (Singapore)
Dr Ednin Hamzah Vice-Chairman Co-opted (Malaysia)
Professor M R Rajagopal Vice-Chairman Co-opted (India)
Dr Ghauri Aggarwal Honorary Secretary Co-opted (Australia)
Dr R Akhileswaran Assistant Honorary Secretary Elected (Singapore)
Prof Patsy Yates Honorary Treasurer Appointed (Australia)
Mr Kwan Kam Fan Assistant Honorary Treasurer Appointed (Hong Kong)
Dr Priyadarshini Kulkarni Member Appointed (India)
Dr Maria Witjaksono Member Appointed (Indonesia)
Professor Satoru Tsuneto Member Appointed (Japan)
Dr Jeanno Park Member Appointed (Korea)
Dr Richard Lim Member Appointed (Malaysia)
Dr Yvonne Luxford Member Elected (Australia)
Dr Annie Kwok Member Elected (Hong Kong)
Professor Yoshiyuki Kizawa Member Elected (Japan)
Professor Hyun Sook Kim Member Elected (Korea)
Dr Chun-Kai Fang Member Elected (Taiwan)
Dr Sushma Bhatnagar Member Co-opted (India)
Dr Chong Poh Heng Member Co-opted (Singapore)
Dr Jun-Hua Lee Member Co-opted (Taiwan)

Chairs of APHN committees

Communications: Dr Chun-Kai Fang (Taiwan)

Education: Dr Ednin Hamzah (Malaysia)

Finance: Prof Patsy Yates (Australia)

Human Resource: Mr Kwan Kam-Fan (Hong Kong)

Membership : Dr Annie Kwok (Hong Kong)

Research: Dr Sushma Bhatnagar (India)

Chairs of APHN Special Interest Groups (SIG)

Paediatric Palliative Care: Dr Chong Poh Heng (Singapore)

Pacific Islands: Dr Sue Marsden (New Zealand)

China: Dr Rico Liu (Hong Kong)

Advisory Council (By invitation)

Chair: Prof Tetsuo Kashiwagi (Japan)

Member: Prof Enoch Lai (Taiwan)

Member: Prof Young Seon Hong (Korea)

ALL committee and groups are open for APHN members to join (except finance committee). Please feel free to email the APHN Secretariat at or call +65 6235 5166 to indicate your interest if you will like to be part of the APHN committee or SIG!!

Breakfast with Prof Cynthia Goh – A voice for the dying

This article is reproduced with the kind permission of HCA Hospice Care

Prof Cynthia Goh, Senior Consultant of Palliative Medicine at the National Cancer Centre Singapore (NCCS), is one of the pioneers of hospice in Singapore. She started as a volunteer in 1986 and helped established several palliative care services in the community including HCA Hospice Care.

HCA Hospice Care invites Prof Goh to share the history and how she established HCA Hospice Care, known as Hospice Care Association back then.

“We are in the presence of greatness. A woman who deserves great admiration, someone who initiates to visit dying patients even after a busy day a work,” says Dr Tan Poh Kiang as he welcomes Prof Cynthia Goh.

Palliative care started its journey in 1985 at the St Joseph’s Home in Jurong with 16 beds. Groups of volunteers, comprising of doctors and nurse, visited dying patients with a common mission and goal – to ease and bring comfort to the dying.

“In the midst of busyness, remember why and what makes you want to do this. It makes a huge difference,” says Prof Cynthia Goh repeatedly before she continued with the milestones of home hospice care.

People believed that there was no need for hospice care in the past. But in reality, there were many patients referrals and manpower was an issue. There was a shortage of staff, no funds, no beds, only willing pairs of hands. There was so much to grasp given the the huge amount of incoming patients and their needs. People were concerned with the term hospice care service as it speaks of the “Death House”. Some were doubtful that the hospice care cause would not sustain as people might lose interest easily. As difficult and worrisome as it may seem, these obstacles did not deter Prof Cynthia and her group of dedicated volunteers from their vision.

“Every patient is a gift from God. Wouldn’t you want to treat a gift from God with the best of what you have,” says Prof Goh.


Through a series of volunteering experiences with patients, the group mastered and learnt life values which motivated them to do even more. They learnt to:

  1. Assess symptoms
  2. Communicate with suffering patients
  3. Control pain
  4. Deal with fear
  5. Care for families
  6. Expand the expertise of volunteers to match needs

Most of all, they learnt life lessons from the patients. The kick-started the ground work, it grew and that was when an opportunity came. Dr Tetsuo Kashiwagi came to Singapore to visit our patients, The Straits Times heard about it and covered the story entitled “In Singapore, A Place To Die Peacefully”. The article brought an overwhelming response of 144 letters from the public asking for advice and help.

“We heard of untold stories, problems and how they struggled to deal with death while their loved ones were still around. People wanted to die in dignity and fulfill last wishes,” says Prof Goh.

A group of like-minded medical workers and lay volunteers started to explore and deepen the work they do. They worked with the Singapore Cancer Society and formed a home hospice care group.

“There was so much to do. People were coming to us asking us for advice pertaining to their illness.  Definitely no way we could say no!”

Putting words into actions, the group stomped into homes, started looking after patients and easing their pain. The good works did not go in vain. A sum of $120,000 was donated to home hospice care for three years. The home hospice hired the first nurse and started training classes for other volunteer nurses.

“If you want to be a Nurse, start training and teaching. That’s when you will learn the fastest,” said Prof Goh as an encouragement to the nurses present.


From 1989, HCA Hospice Care has grown simply from a group of volunteers to almost 100 staff now. We thank Prof Goh and her group of dedicated volunteers for the pioneering work and time they have invested in this meaningful cause. Prof Goh continues to touch many lives, not just with her medical expertise but through her love and concern for every individual. To date, she will do whatever it takes to bring comfort and ease patients with life-limiting illnesses.

We would like to thank Dr Cynthia Goh for her time with us, bringing us through the past into the present and guiding us into the future with her words of wisdom and encouragement.

To read more stories from HCA, please visit them at their website.

Five scholarships to the 2nd International Conference of the International Children’s Palliative Care Network


The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce that it will be offering scholarships to help support the travel of palliative care workers in developing
countries to the  2nd International Conference of the International Children’s Palliative Care Network (ICPCN) in Buenos Aires, Argentina from May 18-21, 2016.

Applicants must be living in Low and Middle Income countries, be current members of IAHPC, and actively working in palliative care. Applications from pediatricians and other fields of medicine, nurses, psychologists, pharmacists and other disciplines are welcome. If you wish to apply and are not an IAHPC member, you may join or renew through the IAHPC website

Preference will be given to:

  • Applicants who have not received an IAHPC grant in the past three years
  • Applicants with accepted poster or oral presentations in the Congress
  • Applicants working with children with palliative care needs

Grantees will be selected by a committee of IAHPC board members and ICPCN trustees.

Deadline to apply is January 31st, 2016. Results will be announced during February 2016. Additional information about the conference can be found in the ICPCN Conference website

Palliative Care Courses in Australia


Do you currently care for people with life limiting illnesses and their families? Would you like to improve your skills and knowledge to better meet the needs of adults and/or children
with a life-limiting illnesses including cancer and chronic diseases? 
Have you considered undertaking some formal training in Palliative Care?

The Centre for Palliative Care provides a range of professional development opportunities in collaboration with The University of Melbourne. Register now for one of their ten multidisciplinary palliative care short courses or enrol in either the Specialist or Graduate Certificates in Palliative Care.  All courses are evidence based and delivered by a broad range of presenters who are all experts in their field.

Multidisciplinary Short Courses

If you are a generalist health or palliative care professional and want to update your skills and knowledge, then a short course may be the perfect fit for you.  Short courses can also be used towards your Continuing Professional Development (CPD) hours and a certificate will be provided to you at the conclusion of your course.

Choose from a variety of short courses as described in the Multidisciplinary Palliative Care Short Course Guide.

Graduate Programs

If you have an undergraduate health related degree and wish to advance your skills and knowledge in palliative care, enrol in the Specialist or Graduate Certificate in Palliative Care.

Aimed at health professionals of all disciplines, these award courses will enable you to gain a broad overview of the core concepts and practices of palliative care.  Currently there are 5 subjects to choose from:

  • Evidence Based Palliative Care – Online Module (compulsory subject)
  • Fundamentals of Palliative Care (core subject)
  • Contemporary Approaches to Bereavement
  • Adult Palliative Care
  • Psychosocial Aspects of Palliative Care

Classes are delivered in a multi-modal format which includes; online training and discussion, face-to-face learning, case study discussions and experiential learning.  In addition, students are allocated to an experienced palliative care clinician who will mentor them for part of the course.

Specialist Certificate in Palliative Care

The ‘Specialist Certificate in Palliative Care’ is delivered over a 12 month period and students are required to complete two (12.5 point) subjects which equates to approximately 8 days of face to face teaching within a 12 month period. Learn more about the Specialist Certificate in Palliative Care

Graduate Certificate in Palliative Care

The ‘Graduate Certificate in Palliative Care’ is delivered over a 2 year period and students are required to complete four (12.5 point) subjects which equates to approximately 16 days of full time study within a 2 year period. Learn more about the Graduate Certificate in Palliative Care

Need more information?  Visit their website at or contact:

Enrolment Enquiries

Gemma Devine, The University of Melbourne


Course Content Enquiries

Karen Quinn, Centre for Palliative Care


Clinic-in-a-Box – a milestone in palliative care nursing in Indonesia

This article originally appeared in ehospice

On 1 October 2015, Rachel House launched its very first Clinic-in-a-Box training at University Padjadjaran (UNPAD) in Bandung.

This is an important milestone in the development of palliative care in Indonesia.

The six-week course will equip nurses in home-based palliative care skills and financial literacy, to help empower the nurses to deliver palliative care to patients living with life-limiting conditions, including those at home.

The pioneering batch of 22 participants comprises mainly lecturers from nursing faculties across West Java.

With their hearts opened and passion awakened for palliative care, these lecturers will go on to touch the lives of many young nurses in Indonesia to encourage them to be advocates for their patients.

View the original article along with photos on the Rachel House website.

Parents’ perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

Medical Journal of Malaysia, 2015;70(5):295-299. Generally children with malignant disease appear to have a precocious understanding of the concepts of death. Their experiences during treatment might include the deaths of other patients, and they can sense the extraordinary stress of their parents and doctors when death is imminent, as well as feel tremendous isolation if they are not given permission to talk openly about their illness and impending death. Whilst knowledge of the developmental understanding of death and timing is critical when it comes to communicating with children, it is also important to be receptive to when the child is initiating a conversation. “Teachable moments” may be fleeting, and healthcare workers need to be trained and tuned to these moments, so that it can be capitalized with an immediate response. Parents who wish but do not know how to break the news to their child are offered assistance by trained staff. The practice of collusion and mutual pretence seems to be commonly adopted by Malaysian families. Asian cultural practices and beliefs may influence the degree of open communication that takes place. An individual is not autonomous but lives in the context of a family and community. In the case of minors and elders, healthcare decisions are often made by the family.  As parents are the final arbiters on decisions and assent a collaborative disclosure process taking into account the family’s wishes within the context of its culture will likely offer greater benefit overall, than would overriding and undermining the parents’ role in promoting the long term autonomy and well being of their children.

Read the full text article at

Little Stars’ Film Premiere in Malaysia!

Hospis Malaysia in collaboration with the Department of Paediatrics, University of Malaya invites you to the special Malaysian film premiere of


The International Children’s Palliative Care Network (ICPCN) estimates that globally over 20 million children could benefit from palliative care but access to services remains an issue. “Little Stars” is a multi-platform project designed to put children’s palliative care on the global media and public health agendas.  The film celebrates how children’s lives are transformed by making the most of every moment, thanks to the support of their loved ones and the help received to live life to the fullest by their palliative care teams. We believe that children’s palliative care is the right of every child and family facing life-limiting illness. Come join us at the Malaysian film premiere to watch and share as some patients, their families and familiar faces tell their stories and share their thoughts on film.

Watch the trailer here: Little Stars – Life is short, Value every moment movie trailer.

For more information or to RSVP for this event please call Hospis Malaysia’s PR Department on (03) 9133 3936 or via email at

Little Stars should be compulsory viewing for all involved in health services. Children are our future and they deserve the best care in health and in sickness.
Liz Callaghan, CEO Palliative Care Australia


SHC-LCPC Forum – Breakthrough Pain


World Hospice Palliative Care Day in Sri Lanka – Student Sensitisation Programme in Palliative Care

By Dr. Eugene Corea – Board Member, Palliative Care Association of Sri Lanka

The Palliative Care Association of Sri Lanka (PCASL) celebrated the World Palliative Care Day by engaging a group of volunteer school children from the Sri Lanka Saukyadana Movement (SLSM), a youth volunteer organization similar to the St John's ambulance organization. The SLSM has an active presence in many schools in Sri Lanka, which was a good fit for the overall theme of WPCD 2015 of engaging youth in palliative care.

The concept behind the commemoration was partly to increase support for PCASL’s palliative care activities among school going children involved in Saukyadana within their communities. The secondary aim of the commemoration was to invite young undergraduates, medical students and other graduates to implement this concept using music, drama, dance, video presentations, and a one hour presentation by a medical doctor. We hoped that in doing so, the presenters themselves would be motivated to take to heart the concepts of palliative care.

We were thrilled by the presence of a capacity crowd (560) that had children standing in the aisles of an auditorium with a seating capacity of five hundred! What was even more inspiring was the performance of a mini-play by a group of school children from a school in a suburb of Colombo. Apart from SLSM, PCASL was able to obtain services of medical students and other undergraduates from state and private facilities in the island to be present in the programme. We also had trainees from the national school of Physiotherapy and Occupational therapy participating in this programme. All the participants were provided with food by PCASL.

The Palliative Care Association of Sri Lanka is grateful to the Sri Lanka Saukyadana Movement, medical students from the Faculty of Medical Sciences of the University of Sri Jayewardenapura, Cultural Promotion Unit of the Faculty of Medicine of the Kelaniya University, medical students from a non state university, students from the National Institute of Social Development, the Regional Association of Palliative Care northern province and to Voice by Ishan de Lanerolle school for successfully carrying out this programme which was conducted in Sinhala, Tamil and English languages .The programme was funded entirely by the PCASL. October 10th 2015 was an exhilarating and inspirational day for all of us.

Palliative Care Association of Sri Lanka has taken another step forward by launching the Student Sensitization Programme in Palliative Care, enlightening our student generation on the worthy cause of the Palliative Care and equipping them with the necessary skills to care for fellow human beings.  



New Zealand Guidelines go live

This article originally appeared in ehospice

Dr Emily Chang, a paediatrician with the Starship Paediatric Palliative Care Team, reports on the launch of the Clinical Guidelines for End of Life care for babies, children and young people in New Zealand. This great new resource is available to anyone and provides practical ‘on the ground’ advice.

The New Zealand paediatric palliative care community is pleased to announce the launch of their Clinical Guidelines for End of life care for babies, children and young people in New Zealand. This resource is freely available on the internet and cover a range of clinical situations. Among the topics covered are: sharing significant news, planning care, psychosocial care, palliative care emergencies, and management of pain and other distressing symptoms. They have been designed to be easily readable by general paediatric teams and provide practical “on the ground” advice.

New Zealand has one specialist paediatric palliative care team, based at the Starship Children’s hospital in Auckland. However, children with palliative care needs and their families live all through the nation, meaning their care is delivered by general paediatricians, paediatric multi-disciplinary teams and family doctors in their home towns. A survey of these healthcare professionals done in 2012 highlighted the variation in experience and expertise and a need for clinical guidelines.

Publication of the guidelines in September 2015 marks the end of a long resourcing and development process. Creating quality guidelines from scratch usually takes a large team of authors months to years. Being a small nation with limited funding and a 15 month time frame. this was not an option. A more feasible approach was to adapt existing guidelines from around the world to be used in New Zealand. After assessing the quality and suitability of each guideline, 16 were selected. These came from Australia, the United Kingdom and the United States. Once the drafts were written they were reviewed by New Zealand and clinicians and consumer representatives, before being sent onto 3 international reviewers. You can read more about the method and tools we used to develop these guidelines here:

In the first few weeks since their release, they have been used by teams throughout New Zealand and in Australia. Please take the time to browse through them at National Paediatric Palliative Care Clinical Guidelines | Starship If you do use them while caring for children and their families, we would love you to post some feedback which is located at the bottom of each webpage.

Beautiful, painful, miraculous love

This article is reproduced with the kind permission of Butterfly Children’s Hospices

It's been a hard few days at our Home. Hearts are not just broken, they are battered and torn into shreds. In 24 hours, we had said goodbye to two beautiful children - one child we knew intimately and loved unconditionally for 3 years, and another we had only just met, but loved from the instant we looked into her haunted eyes.

Conor has been our boy since June in 2012. He was severely brain damaged with a very unstable seizure condition. One week  he would be completely seizure free, the next he might have up to 80 seizures. There was no pattern, no rhyme or reason to it. We worked on getting the best control possible, but we also knew any day might bring a catastrophic  decline in his situation.  We had to accept that Conor's treatment plan would not involve dramatic medical interventions or heroic surgeries. Those things would not have helped this special boy. What helped Conor was the love and tenderness of his nurses and ayis. They understood his needs and structured his day around them. They didn't just chart his seizures and reposition his limbs - they took the time to really know Conor. They loved him through the long hard weeks, and celebrated as his seizure activity came down to a bearable level. They read to him, sang to him, massaged his limbs, and persevered with sensory therapy.  These were all the small everyday things which made such a difference in his life. These people recognized the brave little character who was trapped within the damaged body, and they loved him without reservation. In the last 24 hours of his life, Conor was very much at the interface between life and death. He was breathing slowly, lying quietly and seemed to be drawing in all the love around him. His ayis and nurses tended to him with utmost care.  Katie was in Nanjing, but returned quickly to Changsha when she got the news. She arrived in time to kiss his sweet face and say good-bye.  Conor  died peacefully and unafraid, surrounded by his people. He left us grieving hard, but thankful for every day of the past three years. Please remember him with us - we miss this dear face so much.





The following evening, at almost exactly the same time, another precious Butterfly baby took her last breath, snuggly held in Katie's arms. Alexa's story was very different. She was only two and a half months old, her tiny body was fragile, and encumbered with drains, and post operative wounds.  Her procedures had been unsuccessful, and she had come to us for end-of-life care. How this little one tore at the hearts of everyone who saw her. So tiny and frail, so sad, and so little time left to pour love into her precious heart. Though she had spent most of her short life in an incubator, the nurses quickly saw that this wasn't what she needed now. She needed to be loved, to be touched and to feel the heartbeat of another human.For some of our new staff, Alexa was the smallest baby they had ever seen. At first they were afraid their hands would bruise or break this tiny hummingbird of a girl. Carefully, Katie and the nurses explained how to hold her and how to feed her safely. To see her ayis move from fear, to holding her close and  singing was incredibly beautiful. With quiet resolve, our staff put their fears aside and supported each other as they created a strong and loving circle around Alexa. Her time was close and she had experienced only hurt in her life so far. But for two precious days, she knew only love.

Our staff are grieving both these children - the one they knew so well and the one they didn't get the chance to know. Soon we will hold a ceremony, share memories and weep together. The love poured over these precious children has left them with hurting hearts. But they have also seen the difference it made - for dear Conor who lived peacefully here for three years, and for Alexa who experienced the warmth of another human perhaps for the first time in her brief life. Beautiful, painful, miraculous love - sometimes it's hard, but the children deserve no less.

If you will like to find out more about the hospice, please visit their website at

We encourage all our members to send in their stories to us. It can be a short summary in English or other languages, preferably with a picture. Please send your emails to Joyce at!



APHN – Hospis Malaysia Palliative Care Workshop: Grief & Bereavement Care

APHN Logo - P390U-Jpg Hospis Malaysia12 – 13 December 2015 @ Hospis Malaysia, Kuala Lumpur

One of the aims of Palliative Care is to provide support to patients experiencing death anxiety and stress of cumulative loss, thereby creating a more healing environment to patients and their caregivers while at the same time being aware of the process of grief and own self-awareness issues.

This two day intense workshop concludes our final series of palliative care workshops for 2015. It is designed to facilitate the process of adaptation to loss and greatly relieve suffering within the critical care setting by focussing on end-of life needs.

The facilitators are
–Associate Professor Amy Chow (Dept. of Social Work & Social Administration,The University of Hong Kong)
–Dr. Gilbert K. T. Fan (Head, Department of Psychosocial Oncology / Co-Chair, Patient Support, National Cancer Centre Singapore)

APHN members get a discount!

Registration submission can be made either online at , emailed to: or faxed to: 603 9133 3941. For further enquiries, kindly contact Ms. Yap Wai Mun at telephone: 03 9133 3936.

A report of 20th annual congress of the Japanese Society for Palliative Medicine

111115This article originally appeared in ehospice

On 18 to 20 June, the Japanese Society for Palliative Medicine (JSPM) held the 20th anniversary of its annual congress at the beautiful harbour city of Yokohama, Kanagawa prefecture, Japan.

The theme of this congress was ‘Dreams Come True’. The President of the Congress was Yusuke Takamiya, School of Medicine, Showa University.

Invited speakers were Tatsuru Uchida, the Baifukan; Hiroshi Nakajima, Setagaya Health Center; Craig Hassed, MD PhD, Monash University; Dr David Hui, Texas University; Rita Charon, MD PhD, Columbia University, and Professor Sheila Payne; Lancaster University.

The multiprofessional nature of our work was reflected in the conference. There were several professional fora such as: Nurse’s Forum, Medial Social Worker’s Forum, Pharmacist’s Forum, Rehabilitation Professional’s Forum, Physician’s Forum; and Forum of Palliative Care in the university hospital.

There were invited lectures, 36 symposia, 19 luncheon sessions, as well as oral and poster presentation sessions.

Over 7800 participants in total joined the congress, there were keen and honest speeches and discussions from clinical, community based, educational, ethical, medical, pharmacological, physical, psychological, political, philosophical, and rehabilitational viewpoints.

The Congress showed multiple dimensions of palliative medicine coming together.

The 21st annual congress will be held from 16 to 18 June 2016 at Kyoto International Congress Center and Grand Prince Hotel in Kyoto. The Congress President is Professor Toyoshi Hosokawa; Kyoto Prefectural Medical University.

Find out more about the Japanese Society for Palliative Medicine online.