Exciting new journey for China SIG

Written by: Prof Enoch Lai, Chair, China Special Interest Group (SIG)
Edited by: Joyce Chee, APHN Executive

In the Asia-Pacific region, the Mandarin speaking population forms a significant percentage of the total population. Geographically, they are found in most of this region, and comprises of various ethnic groups and nationalities. Views on life and death are closely linked to the culture, background, customs and traditions of the individual. This in turn reflects on how palliative care is provided. Speaking the same language and having similar cultures, the Mandarin speaking population have a unique point of view when it comes to end-of-life issues.

The largest proportion of the Mandarin speaking population is located in China. In recent years, palliative care services are sprouting and developing at an unprecedented speed in China. The next step ahead will be to connect to the international palliative care community, work towards setting up a common standard and accreditation system and also to encourage mutual exchange. As the palliative care landscape continues to evolve in China, they can also be connected with other Mandarin speaking communities in the region, have access to resources and best practices around the world that is unique to the Chinese. These experienced professionals from other Mandarin speaking communities in Asia Pacific can provide palliative knowledge and skill to palliative professionals who are situated across all provinces in China to ensure that pain-free, dignified and quality end of life care is accessible to all Chinese.

One of the goals of the Asia Pacific Hospice Palliative Care Network (APHN) is to assist countries in the Asian-Pacific region in building capacity, improving service quality and increasing accessibility. Driven by this common purpose, Prof Cynthia Goh, Chair of APHN, Prof Enoch Lai, Chair of APHN China SIG and Prof Amy Chow, convened a mandarin speaking pre-conference under the Conference – “Innovation and Impact: The Review and Vision of Community End-of-Life Care” hosted by the Hong Kong Jockey Club Charities Trust and the Faculty of Social Sciences of the University of Hong Kong on 16 June 2018. Palliative professionals and experts were invited to exchange ideas and to explore the future development and international cooperation of palliative care in the region.

The meeting was attended by 20 palliative care professionals from Mandarin speaking regions. Action plans are currently in progress and updates will be provided at the next meeting during the Mandarin pre-conference workshop in APHC 2019 in Indonesia. We are all very excited to be in this journey and look forward to meeting again.

Lastly, we will like to thank to the Hong Kong Jockey Club Charities Trust and Prof Amy Chow for making this meeting possible by providing the venue and logistics support.

APHN Mini Interview Series- Dr Rumalie (Mae) Corvera, Philippines

Article written by Marita Linkson (APHN Volunteer)

This is the first in a mini-interview series featuring members of the 18th Council of the Asia Pacific Hospice Palliative Care Network (APHN).

Dr Rumalie (Mae) Corvera 1 was recently elected to the APHN Council, and represents The Philippines.

I asked Dr Corvera about her palliative medicine experience and influences, and where she sees her role on APHN Council 2.

  1. What can you tell me about your role establishing the Home Care and Hospice Program, University of Perpetual Help (Dalta) Medical Center.

After my Fellowship training in Supportive Palliative and Hospice Care, I was invited, along with a colleague, to help set up the HCH Perpetual Help; there was an initial proposal authored by Family Medicine Specialist, Dr Elinore Alba. The Medical Director, Perpetual Help, asked us to help with the implementation; which was rewarding in itself; but to see that it actually could be done, despite a few challenges, including slow acceptance by fellow physicians and budgetary constraints, was the most fulfilling part – coupled with the feedback from patients and families. They expressed gratitude for being cared for by a team from the hospital in the comfort of their own homes, and for us caring enough to see them where they lived.

  1. What do you think are the specific challenges for providing hospice and palliative care in The Philippines?

The lack of Government Support and Community Awareness. The Medical Community is also still in the uphill process of integrating it into “standard practice,” but I believe we are gradually getting there.

  1. What do you hope to achieve in your capacity as an APHN Councillor?

I would be most grateful to help in the area of training and education; not just by teaching, but by helping APHN to promote standards and develop references and resources for training, especially for our less developed Asia Pacific country members. I am also willing to be an advocate for establishing and empowering “Compassionate Communities” in the Asia Pacific region, in line with APHN Council’s vision and mission.

  1. What and/or who inspired you to specialise in Palliative Medicine…

My training at the country’s largest government hospital, Philippine General Hospital, where patients are often told “nothing else can be done,” and the life legacy of Palliative and Hospice Care Pioneer, Dr Josefina Magno.

…and what would you say to doctors or medical students who might be considering this path?

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.

That a critical core in the practice of Medicine is the embracing of true compassion…and to quote Joan Halifax.:

First, compassion is comprised of that capacity to see clearly into the nature of suffering. It is that ability to really stand strong and to recognize also that I’m not separate from this suffering. But that is not enough, because compassion means that we aspire, we actually aspire to transform suffering. And if we’re so blessed, we engage in activities that transform suffering. But compassion has another component, and that component is really essential. That component is that we cannot be attached to outcome.”


APHN Volunteer Reflection

“You make a living by what you get. You make a life by what you give.” ~Winston Churchill

Below is an article written by one of our volunteers, Li Ying. Li Ying is a Year 2 medical student at The National University of Ireland, Galway.

A Reflection on Volunteering with APHN

by Li Ying (article edited by Marita Linkson)

The healthcare industry often conjures up images of doctors with stethoscopes and patients in wards. However, so much more goes on behind the clinical setting; hidden from the public eye. Volunteering at APHN has opened my eyes to the work of regional networks and the most important aspect of their role; connecting medical professionals so they can share information and promote seamless integration of patients into different healthcare settings.

As a volunteer with APHN, my primary role was to assist with administrative tasks. One of my roles was to help collate and update the directory of palliative care services in Asia Pacific. Although seemingly mundane work, my volunteer coordinator, Joyce, regularly encouraged me to read more about palliative care and recommended courses for me to broaden my understanding. She took the time to explain her role and told me what palliative care meant to her. This helped me to really appreciate the value of my work.

A bonus of my volunteering stint at APHN was the opportunity to visit a local hospice and immerse myself in the services offered to patients. I had the privilege of both visiting the day care hospice facility, and following nurses on their home visits. Both experiences gave me first-hand experience interacting with the ultimate beneficiaries of APHN. Meeting the patients and staff devoted to palliative care dispelled some misconceptions I had about palliative care; for example, that palliative care is mainly for end-of-life patients. While that is generally true in a hospice, there are also patients who have outlived their prognosis, hence being admitted into a hospice is definitely not a death sentence! Early recognition of the need for palliative care helps to chart the journey for improving a patient’s quality of life before it gets too late. I have learnt to recognise that palliative medicine is as much an investigation into the patient’s beliefs, hopes and desires, as it is a focus on symptom and pain management.

Volunteering at APHN really gave me a more holistic view of palliative care – a perspective I would not have gained if I had simply volunteered to befriend patients. Thanks for this opportunity, APHN!

Launch of first Chinese educational video on children’s palliative care

This article was originally from ehospice.

Led by Butterfly Children’s Hospice, using a grant received from the Overseas Chinese Charity Foundation, the first Chinese language educational video was created to educate and promote the concept of palliative care. Mothers, health and social care staff from China and Hong Kong are featured in this video, which emphasises on quality of life for children and their families, also introduces the full range of care providers and services.

Read the full article here.

 

Will you be showing a video during World Hospice Palliative Care Day 2017? Email us at aphn@aphn.org to let us know!

A video game to help people cope with grief

This article was originally on eHospice.

“We made a video game that’s hard to play. It will never be a blockbuster. People have to prepare themselves to invest emotionally in a story that they know will break their hearts. But when our hearts break, they heal a little differently. My broken heart has been healing with a new and a deeper compassion — a desire to sit with people in their pain, to hear their stories and try to help tell them so that they know that they’re seen. We made a video game that’s hard to play. But that feels just right to me, because the hardest moments of our lives change us more than any goal we could ever accomplish. Tragedy has shifted my heart more than any dream I could ever see come true.” – Amy Green, creator of the video game ‘That Dragon, Cancer’

Read the full article here.

 

A plot that tugs at your heart, lifelike graphics, a simple impactful message. The message of  World Hospice and Palliative Care Day 2017: Universal Health Coverage and Palliative Care – Don’t leave those suffering behind, can be relayed in the form of a game. Email us at aphn@aphn.org to let us know what activities will you be having to celebrate and support hospice and palliative care.

‘Happy Death Day’ – palliative care and death awareness exhibition held in Thailand

This article was originally from eHospice.

Some 3,300 participants, with another 30,000 people watching the exhibition online, attended the ‘Happy Death Day’ palliative care and death awareness exhibition. The exhibition consisted of various zones, consisted of a talk on how to prepare for death and a ‘Last Talk’ session where people diagnosed with terminal illnesses share their experiences, feelings, hopes and dreams. The second day saw participants reflecting on their lives while lying in a coffin at the exhibition and interacting with speakers, patients, carers and the healthcare team at the ‘Death Cafe’, a casual setting to promote conversations on palliative care or death-related issues.

Read the full article here.

 

An exhibition is an interactive way to promote awareness of hospice and palliative care during World Hospice and Palliative Care Day 2017Email us at aphn@aphn.org to let us know what activities you will be having to celebrate and support hospice and palliative care.

Families in Crisis

This article originally appeared on eHospice.

Family doctors play a crucial role in supporting patients and families through life events, including death and bereavement, even without specialist training in palliative care. Many patients in India do not access primary care, due to the differences between states in economic resources and availability of health care workers. This has a detrimental effect on health outcomes and meant that patients and families living with terminal illness usually lack the support of their family doctor.

The palliative care teams are unable to treat every family member as their own patient as their resources are stretched. Suicide is a consequence of the huge strain families are under because of chronic or terminal illness. In India, 25% of documented are as a result of family problems and another 20% due to illness. The author suggests that for the current situation in India to improve, there needs to be better access to essential pain medications and implementation of government pain management and palliative care policies.

Read the full article here.

How palliative care helped me make an important decision in my life

A revisit to this article to start off the new year. More people need to know about palliative care and its benefits!

ehospice, with permission from the Journal of Pain and Palliative Care Pharmacotherapy, is drawing on narratives to highlight the effect of pain on people and families, and the value of palliative care and access to controlled medications for pain management in addressing this issue. Read the full article here.

Why a person’s death should not be painful

Republished with permission from ehospice

“For patients, the experiences of palliative care are those that mark out their life quality. These are activities that are memorable merely for the absence of pain or suffering, but integral to the quality of life experienced. Where we can’t promise painless days, I believe that everyone should able to access good palliative care that they need and if they need it specialist palliative care. Care that includes practical support, from the cinema trips described, to organising a disabled badge or mowing the lawn, can help reduce stress and therefore pain, returning patients to a more comfortable psychological state, which, as I mentioned earlier, can be just as important in decreasing experiences of pain….read more

Cambodia Tales: A word about waste

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Looking through the lenses of Cambodia society, the writer points out the trend of unnecessary over-prescription of medicines for patients, in this day and age. Perhaps the question to ask ourselves as palliative care workers is “Does taking this medication help the patient NOW, if the medication is meant for controlling certain chronic conditions for the next 10 years?” Palliative care focuses on improving quality of life, and reducing the number of tablets they take may help them improve their appetite, and also feel better emotionally. Can you imagine having to swallow 10 tablets, 3 times a day?

“It has been estimated that in the UK over £2 billion a year is spent on unnecessary, expensive or inappropriate treatment. Furthermore, it is thought that around £300 million is spend by the NHS on wasted medications, as often happens when a person’s medication regime is changed and medicines get stockpiled at home, or when repeat prescriptions are issued without review.

To put this in perspective, the gross domestic product for the whole of Cambodia last year was around $50 billion (approx £37 million).

One of the main ways in which waste can be reduced is through adequate support at the point of prescribing. It is also essential that the effectiveness of medicines, and any adverse effects, are closely monitored, as people may decide to stop their medicines if unsupported.”

Read the full article on ehospice here.

**Opinions expressed in the APHN blog reflect the views of individual authors, and do not represent those of the editorial team or the Asia Pacific Hospice Palliative Care Network.

Compassionate Korail: young people learn about palliative care

From eHospice

The children’s fair held in the Korail slums attracted at least 1000 children to attend, where various NGOs (non-government organisations) opened up stalls to showcase their activities. Momotamoy Korail (Bangla for ‘Compassionate Korail’), the community palliative care centre, had a stall at the fair where children could find out about palliative care for older people in the slum. Their stall provided information about palliative care in general, paediatric palliative care, and the Compassionate Korail project activities.

“…Another one said he had seen us with a doctor visiting his uncle’s house. When we started, the people of Korail didn’t know where we came from, or why we came to Korail slum. But today the story is changing, while the Palliative Care Assistants and volunteers walk through the slum, many of them know that they are from and for ‘palliative care’ and do something for the incurably ill dying patients.

We all are waiting for the day to come when the slum people will come forward and say that they want to run a palliative care centre by themselves, like they run a number of community schools, mosques and take initiatives for community facilities like safe water supply and electricity…read more

Fallen Angels – Mahesh’s Story

From the eHospice newsletter

Mahesh was diagnosed with bone cancer soon after his birth and was brought to the major cities in southern India, to seek help and treatment. In these cities – Chennai, Hyderabad, Vellore and Bangalore – were established pain and palliative care centres, none were referred to Mahesh’s parents. By the end of four years, the family had racked up a huge debt from the medical treatments and had sold everything they owned.

Mahesh’s parents, together with personnel from palliative care teams from Hyderabad and Tricandrum, watched him pass away a day after his fifth birthday, hooked onto machines and in pain. A senior palliative care physician was reported feeling “ashamed” as the child was not referred to them despite being next to a hospital Mahesh was taken to.

Read the full article here.