Building Bridges: 14th World Congress of the European Association for Palliative Care


Cliquez ici pour la version en français

Dr Wadih Rhondali is a member of the Scientific Committee of the 14th EAPC World Congress and the medical coordinator of a psycho-oncology unit in a psychiatry clinic in Marseille, France. He reminds us that EAPC congresses are the perfect opportunity for networking and forging closer international links and that there are ways to overcome language barriers.

Dr Wadih Rhondali

Dr Wadih Rhondali

This year, I was fortunate to be invited to join the Scientific Committee of the 14th World Congress of the EAPC that will take place in Copenhagen on 8-10 May 2015 and I’d like to share some reflections about ‘networking’ that we have still to achieve. I think it’s crucial for the future of palliative care that as clinicians we get involved and continue to participate at this type of event, to maintain the best possible level of knowledge – not only in terms of clinical practice but also in presenting our own research work – and equally that we exchange information about current and future projects with our opposite numbers both in Europe and across the world.

The Scientific Committee will build a considerable part of the conference programme on submitted abstracts. Online submission for papers has just been extended until 31 October 2014 so now is the time to submit your abstract for poster or oral presentation for 2015.

Copenhagen: one of the world's top cycling cities

Copenhagen: one of the world’s top cycling cities

Palliative medicine is a recent discipline: one that was originally developed outside an academic framework thanks to the efforts of the pioneers who had proposed a new vision of care focusing on the needs of patients and their families. In 1989, the Société Française d’Accompagnement et de soins Palliatifs (SFAP) (the national palliative care association in France) was established with the aim to represent, stimulate and facilitate the engagement of people who were ethically or physically involved in the palliative care movement and care of the dying.

Right from the beginning, the SFAP wanted to join an international initiative, particularly the European Association for Palliative Care (EAPC) congress that was held in Paris in 1989. The next EAPC World Congress – of which the theme is ‘Building bridges’ – would be an ideal opportunity to build bridges between the EAPC and the SFAP whose aims are broadly similar. The main problem is the language barrier and sadly this represents a real obstacle to the development of international links for many French palliative care teams. Of course, the issue of language is not unique to French palliative care health professionals – it is a common problem for members of many other national palliative care associations who do not have English as a first language, and perhaps we could all benefit from closer collaboration with the EAPC. Clearly, to achieve collaboration you need a common language and while I certainly do not support the dominance of a single language, I think we should not forget the importance of these ideas for the development of a discipline such as palliative care. For starters, teams that are not familiar with the language of Shakespeare could rely on the support of local translators to create the first ‘bridges’. Indeed, the history of bridge building is above all about the material they were made of. The early examples were made ​​with natural materials such as wood, mud and straw, and stone. With mud and straw we built suspension bridges; with stone and wood we built beam bridges. So let’s start with the materials that we have at our disposal even if these do seem to be very basic.

I’d be delighted to meet you at the congress in Copenhagen and I hope that we shall have the chance to go on a bike ride together!

EAPC congress 201514th EAPC WORLD CONGRESS UPDATE…

Deadline for online abstract submission extended until 31 October 2014…
Submit your abstracts for posters and oral communications now! Click here for full details and online submission.

Apply for the EAPC Early Researcher Award
Nominate an outstanding early career researcher or clinician to be one of the three next EAPC Early Researcher Award winners. Supervisors/mentors can nominate someone or candidates can nominate themselves. The winner of the first place will be invited to present his/her work to an international audience at the 14th World Congress of the EAPC. Closing date: 30 November 2014. Click here for criteria and to apply.

Register for the conference online – Early bird registration rate until 15 February. 

‘Building Bridges’: Le 14ième Congrès Mondial de l’Association Européenne de Soins Palliatifs

Le Dr Wadih Rhondali est membre du Comité scientifique du 14e Congrès mondial de l’EAPC et il est le coordinateur médical d’une unité de psycho-oncologie dans une clinique psychiatrique à Marseille, en France. Il nous rappelle que les congrès de l’EAPC sont l’occasion idéale pour la constitution et le développement de réseaux et le renforcement des relations internationales qui sont un moyen en soi pour apprendre à surmonter les barrières linguistiques.

Dr Wadih Rhondali

Dr Wadih Rhondali

J’ai eu cette année la chance d’être invité à participer au comité scientifique de la conférence de l’EAPC qui se déroulera à Copenhague du 8 au 10 mai 2015 et je souhaitai ainsi partager avec vous ces quelques réflexions quant à ce travail de  «networking » qu’il nous reste à réaliser. Il me semble crucial pour l’avenir des soins palliatifs de pouvoir continuer à se mobiliser en tant que clinicien en participant à ce type de manifestation pour maintenir le meilleur niveau de connaissances possibles en terme de pratiques cliniques mais également en tant que chercheur à la fois pour présenter nos propres travaux mais également pour échanger avec leurs homologues européens sur les projets en cours et à venir.

Copenhague: une des meilleures villes cyclables au monde

Copenhague: une des meilleures villes cyclables au monde

Une grande partie du programme de la conférence sera élaborée par le Comité Scientifique à partir des résumés soumis. La soumission en ligne des résumés vient d’être prolongée au 31 Octobre 2014, et il est maintenant temps de soumettre vos résumés pour un poster ou une présentation orale pour 2015.

La médecine palliative est une discipline récente, qui s’est initialement développée en dehors des structures académiques grâce à la mobilisation de véritables pionniers en proposant une nouvelle vision du soin centré sur les besoins du patient de son entourage. En 1989, la Société Française d’Accompagnement et de soins Palliatifs (SFAP) a été crée avec pour objectif de représenter, de stimuler et de faciliter l’action des personnes morales ou physiques impliquées dans le mouvement des soins palliatifs et de l’accompagnement des personnes en fin de vie.

Dès sa création la SFAP a souhaité s’inscrire dans une démarche internationale en particulier avec le congrès de l’ EAPC qui avait été organisé à paris en 1989. Le prochain congrès de l’Association Européenne de Soins Palliatifs (EAPC) à venir dont le thème est « building bridges » sera l’occasion idéale pour parfaire la construction des ponts entre l’EAPC et la SFAP dont les objectifs sont plus que convergents. Seule difficulté, la barrière de la langue… cet élément constitue, malheureusement, une difficulté réelle à l’établissement de liens internationaux pour un grand nombre d’équipes de soins palliatifs françaises. Bien entendu, la barrière de la langue n’est pas propre aux soignants français – c’est une problème fréquent pour de nombreux autres pays n’ayant pas l’anglais comme première langue, et peut–être pouvons-nous tous bénéficier d’une collaboration étroite avec l’EAPC. Il est évident que l’établissement de collaborations nécessite un langage commun, et loin de soutenir l’hégémonie d’une langue unique, il semble important de ne pas oublier l’importance de ces échanges pour le développement d’une discipline telle que les soins palliatifs. Pour commencer, les équipes peu familières avec la langue de Shakespeare pourront s’appuyer sur quelques traducteurs locaux pour l’établissement des premières passerelles. En effet, l’histoire de la construction des ponts est avant tout celle des matériaux qui les constituent. Les ouvrages primitifs étaient réalisés avec des matériaux naturels tels que le bois, les lianes et la pierre. Avec des lianes, on a construit des passerelles suspendues ; avec la pierre, le bois, des ponts en poutre. Commençons donc avec le matériel dont nous disposons, même si celui–ci nous semble rudimentaire.

Je serai ravi de vous rencontrer lors de ce congrès à Copenhague et j’espère que nous aurons l’occasion de faire un tour de bicyclette ensemble!

EAPC congress 2015Actualité du 14e Congrès Mondial de l’EAPC …

Date limite pour la soumission des résumés en ligne prolongée jusqu’au 31 Octobre 2014
Proposez vos résumés pour des posters et des communications orales dès maintenant! Cliquez ici pour plus de détails et la soumission en ligne.

Postuler pour la bourse de l’EAPC « jeune chercheur »
Nommer un chercheur ou un clinicien remarquable en début de carrière pour être l’un des trois prochains lauréats de la bourse EAPC «jeunes chercheurs». Les directeurs de recherche et/ou mentors peuvent désigner des candidats et les candidats peuvent également soumettre leur propre candidature. Le 1er lauréat sera invité à présenter son travail à un public international au 14e Congrès Mondial de l’EAPC. Date limite: 30 Novembre 2014. Cliquez ici pour les critères et pour postuler.

Inscrivez-vous à la conférence en ligneTarif préférentiel jusqu’au 15 Février.

 

 

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In front of the next step in palliative care in Poland

Speaking at a conference in Poland earlier this year, EAPC President, Professor Sheila Payne, met Dr Tomasz Gradalski, Medical Director of St Lazarus Hospice in Kraków, Poland, and invited him to contribute to the blog. Dr Gradalski talks about some of the challenges that confront palliative care in Poland today.

Dr Tomasz Gradalski

Dr Tomasz Gradalski

Since Dame Cicely Saunders inspired our pioneers in the development of palliative care, Poland has made impressive progress in this field. Nowadays, in terms of the number of palliative care units, we are in third position in Europe and the number of specialists (physicians and nurses) is increasing. This field of medicine has already been integrated into mainstream healthcare provision.

The first multiprofessional voluntary palliative care service was started at St Lazarus Hospice in 1988. In 1993 home care began with employed staff, and dozens of patients received help each year. From that time, tremendous progress has been made and recently we have managed to care for more than 1,300 people a year.

St Lazarus Hospice: members of the hospice inpatient team

St Lazarus Hospice: members of the hospice inpatient team

But there is still a lot to do. Up to 10% of patients still have to seek palliative care on their own, without any support from their doctors. The majority of patients admitted to our hospice are referred from local hospitals when they are in the advanced stage of their disease. A minority are admitted from the community and (the smallest number) come from the long-term care facilities. There is no actual connection between palliative care and long-term care fields, aside from a few patients that we have in nursing homes within our home care service. We are very concerned that most of the long-term care units’ residents are dying during needless hospitalisation at the end of life and we have therefore begun an ongoing training programme for GPs.

St Lazarus Hospice: members of the outpatient team

St Lazarus Hospice: members of the outpatient team

A lot of challenges are ahead of us. In my opinion, one of the biggest challenges is the financial one: maintaining the delivery of proper quality of care is impossible by relying only on health insurance resources, thus it is necessary to raise additional money from charitable sources. Another problem is the severe lack of beds for long-term patients in Poland (in fact, we need four times the existing number of beds). Hospices are not able to discharge patients whose conditions remain stable without a delay. Consequently, there are several persons every month who die while waiting for admission. We are aware that many people suffer needlessly in hospitals. Some are diagnosed and documented by physicians as being in pain, but they are still left without analgesics. Others, during the last period of their life, receive medication with a high risk of side effects and no certain benefits A further challenge that we face is related to patient safety, where there is rather poor correlation between documented complaints and the patient’s real presentation of his/her situation.

The way ahead is not easy partly because the hospice movement in Poland is perceived as a social rather than as a medical service. But we have the potential to overcome the challenges – now is the time for action!

Links and resources…

 

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Developing core competencies for children’s palliative care: EAPC publishes new white paper

Professor Julia Downing, Director of Education and Research, International Children’s Palliative Care Network (ICPCN); Team Leader EU-funded project on the Development of Palliative Care in Serbia and Professor at Makerere University, Kampala, Uganda, explains the background to a longer article published in the September/October edition of the European Journal of Palliative Care.

Professor Julia Downing

Professor Julia Downing

“I met the girl’s mother in the Dom Zradvija (a health centre in Serbia) – she was in tears as her daughter is dying and she wants our home care team to go and visit. I really want to help her but don’t feel competent to do so – please can you give us some training to help us?”

These were the words of a nurse that I met recently in Serbia. She, like many other health professionals in Europe, and indeed around the world, did not feel competent in the provision of palliative care for children. As we talked more, she told me how she did not know how to talk to young children about their illness and death and dying; she was worried that the girl would be in pain, and she did not feel competent about managing her pain. Thus, for this nurse, and all the others who don’t feel competent, education and training in children’s palliative care is key, and yet for many people, such training is not available.

It is important that health and social care professionals, whether working specifically in children’s palliative care, or those working in the community caring for children at home, feel confident in providing such care. Thus, following a survey of existing educational programmes in the region, the European Association for Palliative Care (EAPC) Children’s Task Force set out to develop a list of core competencies for children’s palliative care. The resulting white paper, published in the September issue of the European Journal of Palliative Care, outlines competencies for each of the three levels of education adopted by the EAPC, ie the palliative care approach, general palliative care and specialist palliative care. The focus of the paper is aimed at the second and third levels of education, ie general and specialist children’s palliative care, outlining the key domains and minimum competencies for each domain such as enhancing physical comfort, identifying and responding to the child’s psychosocial, educational and spiritual needs, and facilitating communication and decision-making.

There are a variety of training programmes available on children’s palliative care throughout Europe, yet in many countries such programmes are still hard to access or even non-existent. I hope that this white paper will guide the development and provision of education programmes in children’s palliative care across the region. It provides a competency framework around which to develop training programmes, as well as guiding the health professionals themselves. I hope that one day, all health professionals, such as the nurse I met in Belgrade, will be trained to provide care and be confident in their knowledge and skills in order to provide quality palliative care for children in need.

EJPC215cover-2To read a copy of the full article…
This post relates to a longer article, ‘Summary of the EAPC White Paper on core competencies for education in paediatric palliative care’ by Julia Downing, Julie Ling, Franca Benini, Sheila Payne and Danai Papadatou, published in the September/October 2014 issue of the European Journal of Palliative Care (vol. 21.5).  If you have a web-based subscription to the journal you can download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online. 

Links and resources…

 

 

 

Posted in Children's palliative care, EAPC guidelines and recommendations, European Journal of Palliative Care, Publications | Tagged | Leave a comment

Cross-cultural experience of palliative care – UK and Taiwan

Ahead of tomorrow’s World Hospice and Palliative Care Day, the European Association for Palliative Care (EAPC) is delighted to present current developments in hospice and palliative care in Taiwan as part of a special series of posts to celebrate World Day. In June this year, Professor Sheila Payne, President of the EAPC, was invited to Taiwan; we are very pleased that three of the many palliative care practitioners and academics she met during her visit have agreed to share their experiences of research, spiritual care and clinical practice. 

Professor Sheila Payne, EAPC President, with Dr Ping-Jen Chen

Prof Sheila Payne, EAPC President, with Dr Ping-Jen Chen

In this, the final part of the series, we hear from Dr Ping-Jen Chen, Consultant Geriatrician and Hospice Palliative Medicine Specialist in Palliative Care Center, Chi-Mei Medical Center; Academic Research and Ethics Committee, Taiwan Academy of Hospice Palliative Medicine and council member of the Formosan Association of Care and Education for Seniors.

Sponsored by Taiwan’s Ministry of Health and Welfare and the Chi-Mei Medical Center, I had a clinical placement at the Marie Curie Palliative Care Research Unit at University College London (UCL) from October 2013 to February 2014. My placement focused on the clinical practice and ethics of palliative care for patients with dementia.

Professor Julian Hughes (University of Newcastle) with Dr Ping-Jen Chen

Professor Julian Hughes (University of Newcastle) with Dr Ping-Jen Chen

During my stay in the UK, I worked with colleagues at UCL on a systematic review concerning patients with advanced dementia and cancer, and shadowed the investigators to evaluate participants and collect data for the prospective studies. At the suggestion of Dr Elizabeth Sampson, I also visited Professor Julian Hughes at the University of Newcastle to discuss ethical reasoning of dementia care, and Dr Adrian Treloar at the Oxleas NHS Foundation Trust to learn more about supporting patients with advanced dementia and their families at home. At the Cicely Saunders Institute in London, I met and exchanged information with Dr Jenny van der Steen from Amsterdam, the leading author of recommendations on palliative care in dementia from the EAPC. I also experienced some impressive real-world practice by staff at Marie Curie Hospice, Hampstead, and the palliative care team at the Royal Free Hospital, London.

Dr Ping-Jen Chen with Dr Elizabeth Sampson (UCL) (centre) and Dr Jenny van der Steen (VU University, Amsterdam).

Dr Ping-Jen Chen with Dr Elizabeth Sampson (UCL) (centre) and Dr Jenny van der Steen (VU University, Amsterdam).

Comparing the delivery of palliative care in Taiwan to that of the UK: first there is no independent ‘hospice’ in the community in Taiwan. Inpatient palliative care in Taiwan is based in a ‘hospice ward’, or in non-hospice wards covered by an outreach advisory service within acute hospitals. The expenditure for operating palliative care services in Taiwan is reimbursed by National Health insurance rather than by charitable donations, which is the main financial support for hospices in the UK. Another difference is that accredited specialist home care nurses can legally prescribe medication in the UK, which has facilitated the efficiency of patient care in the community. The dissemination of palliative care for non-cancer disease is still limited in Taiwan, especially for patients with dementia and renal failure. The awareness and implementation of advance care planning among patients and clinicians is less adequate in Taiwan. The Mental Capacity Act in the UK has established sanctioned principles to protect people who can’t make decisions for themselves, or lack the mental capacity to do so, whereas there is no such legislation to provide better care for patients with dementia or mental incapacity in Taiwan.

Inspired by my experience in the UK and the people I met there, I will continue to dedicate myself to dementia and palliative care through my links with professional societies and public advocacy.

In my opinion, shifting the paradigm of survival prediction towards care needs as the trigger for supplying palliative care to patients with advanced dementia is a top priority in Taiwan. I am grateful to Professor Sheila Payne for inviting me to share my cross-cultural learning on this blog.

Links and resources…

Click here for other posts in our special series on Taiwan: Dr Chien-An Yao on the role of the Clinical Buddhist Chaplain in palliative care and Dr Sharlene Shao-Yi Cheng on the development of the Taiwan Research Network.

World Hospice and Palliative Care Day 11 October 2014 – Achieving Universal Coverage of Palliative Care: Who Cares? We Do!
Good luck to everyone who is involved in tomorrow’s World Hospice and Palliative Care Day. Please visit the World Day website to read about some of the inspirational initiatives that are being held across the world to celebrate World Day and raise awareness and funds for local hospices and palliative care services. 

 

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Spiritual care in Taiwan: Introducing the Clinical Buddhist Chaplain in palliative care

To acknowledge World Hospice and Palliative Care Day on 11 October, the European Association for Palliative Care (EAPC) is delighted to present current developments in hospice and palliative care in Taiwan as part of a special series of posts. In June this year, Professor Sheila Payne, President of the EAPC, was invited to Taiwan; we are very pleased that three of the many palliative care practitioners and academics she met during her visit have agreed to share their experiences of research, spiritual care and clinical practice. 

Dr Chien-An Yao, Director of Palliative Care Unit, Department of Family Medicine, National Taiwan University Hospital, and Secretary General of Taiwan Academy of Hospice Palliative Medicine, continues our special series on Taiwan.

About 15% of the Taiwanese believe in Christianity. However, most people believe in folk religions, including Buddhism, which account for about 80%-90% of the population. They also accept the Buddha Dharma and the care model of Clinical Buddhist Chaplains.

Professor Tai-Yuan Chiu, Professor Ching-Yu Chen and Dr Chien-An Yao

Professor Tai-Yuan Chiu, Professor Ching-Yu Chen and Dr Chien-An Yao

Taiwanese indigenous spiritual care began in 1995 when the Hospice and Palliative Care Unit of the National Taiwan University Hospital was first established. The unit received research grants to study the possibility of applying Buddha dharma in terminal care, resulting in the launch of the training programme for Clinical Buddhist Chaplains (CBC) in 2000. While Western hospice care, based on the life structure of the body, mind, and soul as conceived of in Christianity, focuses on the spiritual care of the patient, Buddhists may concentrate on the four establishments of mindfulness regarding the body, feelings, states of mind, and phenomena, or focus on the life structure of the body, mind, and wisdom.

Spirituality is thus defined as: “the ability to respond to, to realise and to understand the right dharma.” It is a power, and manifests the maturity of the mind. It emphasises the importance of regarding the patient as demonstrator – someone who not only receives care but also shows us how to face death. Qualified CBCs are required to successfully complete a training programme consisting of lectures as well as bedside practicum on applying Buddhist practices to end-of-life care. According to the Four Noble Truths, clinical diagnosis and treatments can be stated as follows:

  • spiritual suffering is identified from the sickness categorised into physical, psychological, family, social and spiritual aspects;
  • the goal of care is planned according to ‘Four Dwellings in Mindfulness’;
  • the effects of the practice of Buddhist methods are carefully evaluated and recorded.
Huimin Bhikshu gives a bedside teaching demonstration for Clinical Buddhist Chaplains

Huimin Bhikshu gives a bedside teaching demonstration for Clinical Buddhist Chaplains

CBCs have been involved in hospice palliative care for more than 10 years and have now become core members of the hospice palliative care team in Taiwan. A CBC does his/her best to help patients based on their needs to improve their life quality. After learning the basic experiences of being alongside a dying patient, CBCs develop their own skills in teaching Buddha dharma. Training programmes to be a professional CBC are divided into four stages:

  • a basic three-month clinical training programme on hospice wards;
  • continuing education programme and advance study;
  • teaching skills training programme; and
  • a faculty development programme.

There are now 35 qualified CBCs working in 39 units across 13 areas of Taiwan. In palliative care units, CBCs who have completed the training provide bedside care to terminally ill patients, resolve patients’ spiritual sufferings, promote their spiritual status and reduce their death fears. These practices help patients to transcend the worldly dharma, discover their ‘inner’ power, improve their life quality and achieve a good death. CBCs also provide life education to family members, transform obstacles into practical assistance, reduce grief, and boost the morale of the palliative care team.

References
Ching-Yu Chen 2012. Clinical Buddhist chaplain based spiritual care in Taiwan. Taiwan Journal of Hospice Palliative Care 17 (3), 300-309.

Huimin Bhikshu 2012. The role of mindfulness in hospice & palliative care in TaiwanTaiwan Journal of Hospice Palliative Care 17(2), 200-209.

Jonathan S. Watts and Yoshiharu Tomatsu (2012). Buddhist care for the dying and bereaved. Simon & Schuster.

Links and resources

Follow the EAPC blog on Friday 10 October
To catch the final post in our special series to celebrate World Hospice and Palliative Care Day, please visit the blog on Friday. Dr Ping-Jen Chen, a consultant geriatrician and hospice palliative medicine specialist from Taiwan will be writing about cross-cultural experiences of palliative care.

World Hospice and Palliative Care Day 11 October 2014 – Achieving Universal Coverage of Palliative Care: Who Cares? We Do!
With just four days to go, people across the world are preparing to celebrate World Hospice and Palliative Care Day. Anybody can get involved and raise awareness and funds for their local hospice and palliative care service. These services need your help to ensure that people living with life-limiting illnesses, their families, friends and carers receive the care and support that they need. Let’s get involved and support World Hospice and Palliative Care Day now. Please visit the World Day website for information, ideas and inspiration…

 

 

Posted in National and international events, Spiritual care | Tagged , , | Leave a comment

Bridging the international gap through modern technology – Taiwan Research Network

To acknowledge World Hospice and Palliative Care Day on 11 October, the European Association for Palliative Care (EAPC) is delighted to present current developments in hospice and palliative care in Taiwan during the coming week. In June this year, Professor Sheila Payne, President of the EAPC, was invited to Taiwan; we are very pleased that three of the many palliative care practitioners and academics she met during her visit have agreed to share their experiences of research, spiritual care and clinical practice. 

Dr Sharlene Shao-Yi Cheng, Assistant Professor and Attending Physician in the Department of Family Medicine, National Taiwan University Hospital; and Founder of the Taiwan Research Network Council, Taiwan Academy of Hospice Palliative Medicine, begins our special series on Taiwan.

Dr Sharlene Shao-Yi Cheng

Dr Sharlene Shao-Yi Cheng

Inspired by Dr Stein Kaasa of the European Palliative Care Research Centre, the Taiwan Academy of Hospice Palliative Medicine established its own research network in Taiwan in 2011. By collecting data simultaneously in different medical centres and through hi-tech industry, we believe it is the most efficient, influential and up-do-date way to carry out research in palliative medicine in the 21st century.

The academy functions as the soul of the network. The secretariat is responsible for funding and supervising the progress of the project. The academic division conducts the research in every detail including setting the direction of the research, recruiting the participating hospitals, monitoring data collection in each hospital, and assigning people for data analysis, writing and final authorisation.

Since achieving a good death is one of the ultimate goals in palliative care, the first multicentre study we conducted was to find out what affects the quality of dying of terminally ill cancer patients in Taiwan. As a previous study has shown that patient autonomy is one of the factors, we therefore wanted to further examine what affects patient autonomy. By using the validated ‘Good Death Scale’ we had developed, we measured the associated correlates that affect quality of dying and patient autonomy. Four medical centres participated in the study and the team held monthly teleconference discussions.

The second study was to investigate the quality of life of terminally ill cancer patients in Taiwan. By using the Taiwanese version of the McGill Quality of Life questionnaire, we interviewed patients at the time of hospitalisation and again one week after. We would like to compare the difference and evaluate the outcome after the intervention of palliative care.

Recently, we have been collaborating with Dr Tatsuya Morita, an internationally renowned scholar in palliative medicine from Japan, focusing on the subjects of physician-perceived good death and patient autonomy. The survey was designed and distributed by Japan and physicians from Korea, Japan and Taiwan answered the questionnaire via computer. The study is the first example of a cross-cultural research network in Asia.

Dr Sharlene Shao-Yi Cheng with Professor Sheila Payne in Taiwan

Dr Sharlene Shao-Yi Cheng (right) with Professor Sheila Payne in Taiwan

Our thanks to Dr Sheila Payne, President of the EAPC, who visited Taiwan in June and took an interest in our network. We are still a fledging network and very grateful to have this opportunity to introduce our work on the EAPC blog. We would welcome contact from other countries that may be interested in joining us and to sharing scientific knowledge in this field. Please email me or leave a comment below if you’d like to join us.

Links and resources

Follow the EAPC blog on Wednesday
Dr Chien-An Yao, Secretary General of Taiwan Academy of Hospice Palliative Medicine, will talk about the role of the Clinical Buddhist Chaplain.

World Hospice and Palliative Care Day 11 October 2014 – Achieving Universal Coverage of Palliative Care: Who Cares? We Do!
With just six days to go, people across the world are preparing to celebrate World Hospice and Palliative Care Day. Anybody can get involved and raise awareness and funds for their local hospice and palliative care service. These services need your help to ensure that people living with life-limiting illnesses, their families, friends and carers receive the care and support that they need. Let’s get involved and support World Hospice and Palliative Care Day now. Please visit the World Day website for information, ideas and inspiration…

Posted in National and international events, Research | Tagged , , | 1 Comment

International law and controlled opioid medicines

Dr Katherine Irene Pettus, PhD, Advocacy Officer, Human Rights and Palliative Care, International Association for Hospice and Palliative Care, reports on the fifth intersessional meeting of the Commission on Narcotic Drugs.

Dr Katherine Pettus

Dr Katherine Pettus

As Advocacy Officer for International Association for Hospice and Palliative Care (IAHPC), I attend meetings of the Commission on Narcotic Drugs (CND), a UN treaty body, with other civil society organisations concerned with health and human rights. Our goal is to shift CND’s historical emphasis from excessive control and enforcement of illicit drugs, to improved availability of opioid medicines for the relief of pain and suffering. On 4 September, I attended an intersessional meeting in Vienna.

The purpose of this meeting was to prepare delegates of CND member states for 2016 UNGASS (United Nations General Assembly Special Session on Drugs). The afternoon session featured a brief panel to educate delegates on the issue of availability of essential opioid medicines controlled under international law. Presentations were given by representatives from the International Narcotics Control Board, INCB, (Dr Stefano Berterame), World Health Organization, WHO, (Dr Gilles Forte), and United Nations Office on Drugs and Crime, UNODC, (Dr Gilberto Gerra). Links to all three presentations, which include detailed statistics, graphics and references, are available on the UNODC website Special Session of the General Assembly UNGASS 2016.

Fifth intersessional meeting of the Commission on Narcotic Drugs: Left to right: Dr Gilles Forte (WHO), Dr Stefano Berterame (INCB), Dr Gilberto Gerra (INCB); Ambassador Shamaa (Egypt) CND Chair (screen)

Fifth intersessional meeting of the Commission on Narcotic Drugs:
Left to right: Dr Gilles Forte (WHO), Dr Stefano Berterame (INCB), Dr Gilberto Gerra (INCB); Ambassador Shamaa (Egypt) CND Chair (screen)

Although the Single Convention on Narcotic Drugs mandates states parties to ensure adequate access to the opioid medicines “scheduled” under its provisions, more than 80% of the world’s people live in countries where access to those medicines is “low to inadequate.” This situation represents a human rights violation of global proportions, a “global pandemic of untreated pain” in the words of the European Society for Medical Oncology.

While those of us who have been working on improving availability welcome increased attention to the issue, it was disappointing that there was still so much narrative emphasis on control and misuse rather than access, particularly from Dr Berterame. Dr Gerra of UNODC did his best to set the stage for a more comprehensive approach, saying that “Access to medicines is 50% of the mandate of the drug control system – it cannot just be relegated to a sub-point under the theme of ‘drugs and health’.”

The US, Netherlands, Norway and Spain all commented on the fact that CND must do better to improve the situation to conform to the mandates of the treaties. Dr Forte, Coordinator of Medicines Policy at the WHO, presented Scholten and Duthey’s powerful data, as well as the results of the ATOME (Access to Opioid Medication in Europe) project, and the Australia/UICC initiative (see link below for Dr Forte’s presentation).

Now, the work is to follow up to ensure that CND delegates integrate this essential educational piece into their policy agendas for the 2016 UNGASS.

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Posted in Advocacy, ATOME, Opioid access | Tagged , | 1 Comment