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

Acknowledgement of form submission

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Please do not hesitate to contact aphn@aphn.org should you require further assistance.

Warm regards
APHN Secretariat Office

Paediatric Palliative Care Service Directory Update

Dear friend

Thank you for adding your service to the Paediatric Palliative Care Service Directory.

Please do not hesitate to contact Joyce at aphn@aphn.org should you wish to find out more information about the Paediatric Palliative Care Special Interest Group and our activities!

Warm regards

APHN Secretariat Office

4th Maruzza Congress on Paediatric Palliative Care

Click http://www.childrenpalliativecarecongress.org/congress-2018/ to go to the conference website.

The APHN is proud to be a supporting partner of this conference.

APHN-Hospis Malaysia Workshop: Communication Skills

Dear Doctors, Nurses and fellow healthcare professionals,

PALLIATIVE CARE WORKSHOP ON COMMUNICATION SKILLS (14 – 15 April 2018)

We would like to invite interested participants to our 2-day Palliative Care Workshop on Communication Skills which will be conducted from 14 – 15 April 2018.

Effective communication skills are an absolute necessity towards providing well planned palliative care which is delivered through the collaborative efforts of many people including the patient, their care givers (family and friends) and healthcare providers.

This workshop deals with the mechanics of communication that ranges from issues, techniques and practical sessions when dealing with patients with life-limiting illness and their families.

This workshop will be facilitated by Dr Rebecca Coles-Gale, Clinical & Health Psychologist from the United Kingdom together with Dr Sylvia McCarthy from Hospis Malaysia. This workshop will focus on highly interactive role plays, problem-based learning and case studies in small group settings.

It is conducted in English, all participants will be expected to communicate and interact during the workshop. Doctors and nurses will benefit most as the most difficult areas are encountered during clinical consultations.

Registration for workshop can be made online at our website: www.hospismalaysia.org For further enquiries, kindly contact Communication Department via telephone: 03 9133 3936.

Thank You.

 

Yours sincerely

 

Dr Ednin Hamzah

Chief Executive Officer, Hospis Malaysia