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

Dover Park Hospice, Singapore

Dover Park Hospice was founded in 1992 as a secular, non-profit organisation to meet the growing need in Singapore for hospice care for terminally-ill patients. It is Singapore’s first purpose-built hospice, designed to provide a serene environment close to nature.

Dover Park Hospice was started by volunteers, and today volunteers continue to play an integral role in all aspects of hospice work, from patient care to social activities and administrative support. They are an important complement to the permanent staff, working together for patients and their families.

Open to everyone regardless of age, race, religion or income level, Dover Park Hospice is dedicated to meeting the unique physical, emotional and spiritual needs of those who are nearing the end of life’s journey. The goal is to enhance the living, comfort the dying and support the grieving with compassion and dignity.

At Dover Park Hospice, Every Moment Matters. Over the past 25 years, it has added life to days for more than 11,000 in-patients and their families. It started home care services in April 2012 and since then it has served 1,588 patients and family members. Dover Park Hospice started home care services for advanced dementia patients in October 2014 and similarly has served 310 patients and family members.

In October 2017, Palliative Care Centre for Excellence in Research and Education (PalC), a tripartite collaboration formed by Dover Park Hospice, National Healthcare Group (NHG) and Nanyang Technological University (NTU), Singapore is set up to focus on end-of –life research and education.

To cater to increasing demand for palliative care in the community, Dover Park Hospice will be setting up a Daycare at the end of 2018 and will be doubling its capacity to a 100-bed facility by 2022 when it moves to the Integrated Care Hub.

Visit their website here.

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.

20th Anniversary Conference of the Korean Society for Hospice and Palliative Care

From July 6 –7, 2018, the Korean Society for Hospice and Palliative Care will host their 20th Anniversary Conference in Korea.

For more information in Korean, visit their website www.hospicecare.co.kr or email to hospice@hospicecare.co.kr

 

Compassionate Presence: Interfaith Approach to Palliative Care

Written by: APHN Editorial Team (Malaysia), Dr Diana Katiman
Edited by: APHN Volunteer Editor, Ms Djin Lai

In multi-ethnic and multi-cultural Malaysia, palliative care healthcare givers (HCG) are challenged with the variable ways terminally-ill patients and their families deal with death and dying.  There are limited writings and few workshops conducted that has broached this rather sensitive subject.

To address this gap, the World Community for Christian Meditation (Malaysia, WCMM) has conducted a seminar on 9th June 2018 at the Exhibition Hall, Council of Churches Malaysia, Petaling Jaya Malaysia. Designed for the general public and HCG, its objective was to create awareness and sensitivity in dealing with dying patients in the Malaysian context.

The seminar was unique because it interlaced lectures with music, poetry and dance from various cultural backgrounds. The lectures were delivered by those who are directly involved in the care for the dying – doctors, nurses, counsellors, family members, friends, volunteers and a cancer patient. They collectively addressed HCG and carer’s concerns in caring for the dying like self-care, meditation and preparing patient and family for the inevitable; spirituality issues; and views on death and dying from the Orang Asal (Original people of Malaysia), Hinduism, Muslim, Buddhist and Christian perspectives.

A soul-moving song by Malaysian’s evergreen artist, Uji Rashid, written in memory of a loved one she had lost, kicked off the event, followed by a series of lectures. Participants were then awed by the Odissi dance ‘Moshka’ by a mother-and-two-children team. Early Hindu sages taught the path to moksha as a way to liberate the mind from fear of death. A note written by a clinical psychologist-cum-counsellor who looked after dying patients with Acquired Immune Deficiency Syndrome (AIDS) was read to the audience following the second series of lecture.

Among the lectures in the third session, the president of the Malaysian chapter of WCCM, Dr Patricia Por, shared  her experience in facilitating a multifaith meditation activity for a group of cancer patients and their families. This experience was practically shared by the audience when a moment of silence was observed with each doing self-contemplation. Instrumental music by a Malay group was played easing in and out of the silence.

The one-day seminar was probably the first of its kind in Malaysia. Besides educating palliative care HCG and the general public in spiritual care for terminally-ill patients, it was a reason for Malaysians to unite and care in the name of compassion. May this sincerity and dedication to care continues to flourish in years to come.

APHN Online Educational Series: Communication Skills Training by Prof Amy Chow

 

 

Dear friends

The APHN Webinar Lecture Series for 2018 is starting in May! Want to learn from the regional experts but unable to travel due to your schedule? Fret not! Join us at this webinar to interact with our speaker and join in discussions real-time, just like you would in a face to face seminar!

We are very honoured to have Dr Amy Chow as our first speaker of the year. Dr Amy Chow is Associate Professor with the Department of Social Work and Social Administration, the University of Hong Kong. She is a member of the prestigious International Workgroup on Death, Dying and Bereavement, a registered social worker with the Hong Kong Social Workers Registration Board and a fellow in thanatology with the Association of Death Education and Counselling. Dr Chow’s field of specialisation is in palliative care, grief and bereavement.

The online discussion has concluded on 23 May 2018. If you will like to view the online lecture, please email the Secretariat Office at aphn@aphn.org

P.S. Are there any expert speakers that you will like APHN to invite? Tell us in the comments below!

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