Russian doctor acquitted of criminal charges over prescribing pain medication

On 21 October, a Siberian District Court acquitted Dr Alevtina Khorinyak of criminal charges over prescribing pain medication to a dying family friend who was not her patient. The ruling came after the Russian Court of Appeals had overturned the conviction of Dr Khorinyak in September 2013 and ordered a re-trial with a new panel of judges. Adri Nieuwhof, Human Rights Advocate, The Netherlands, reports.

Dr Alevtina Khorinyak after her acquittal at the courthouse (

Dr Alevtina Khorinyak after her acquittal at the courthouse (

Dr Khorinyak wrote two tramadol prescriptions after she saw Victor Sechin suffering from unbearable pain in 2009. Sechin was denied adequate pain treatment for 11 days because the free, state-subsidised tramadol he needed was out of stock at his pharmacy. In order to buy the tramadol tablets in another pharmacy he needed a prescription. Sechin’s general practitioner refused to write the prescription.

The Russian Federal Drug Control Service noticed Dr Khorinyak’s prescriptions during a 2011 audit in the local pharmacy. For obscure reasons, the case was referred to the state prosecutor who brought the case to court. Dr Khorinyak was found guilty of “forgery of documents in order to facilitate the commission of another crime” and “trafficking potent substances in large quantities by prior agreement with the intent to sell as an organized group” in May 2013.

Dr Khorinyak did not expect to be treated like a “drugs baron”, she told the Siberian Times.

“To look at a human suffering, knowing that you can help and not do anything, is just wrong. I am a doctor. I swore to help people.”

Dr Khorinyak’s conviction received international attention and Russian journalists started to report about her case. “It created a debate around the issue,” says Olga Usenko, a Russian doctor specialising in palliative care and activist for patients’ rights. Dr Khorinyak’s acquittal is “absolutely unusual”, she adds. In Russia, people who are charged are seldom acquitted by the Courts.

Legal obligations
The World Health Organization does not recommend controlling tramadol as a drug, and neither is it included in the international drug control conventions. But the Russian Federal Drug Control Service added tramadol to a list of potent drugs. Until 2008, the medicine was available to anyone in Russia over the counter without a prescription. Regulations on medical use of controlled substances in Russia are “overly bureaucratic and excessively onerous”, according to Human Rights Watch. They interfere with proper prescribing and with the ability of patients to access these medicines.

It is difficult to reconcile the Russian drug watchdog’s decisions with its legal obligations. For example, the Russian constitution explicitly mentions that “everyone shall have the right to health care and medical assistance. Medical assistance shall be made available by state and municipal health care institutions to citizens free of charge.” As a government body, the drug control authorities are subject to the Constitution. To control tramadol as a drug and to inform the state prosecutor about Dr Khorinyak’s case to write two tramadol prescriptions to a patient with unbearable pain is conflicting with this constitutional right.

Russia has signed and ratified the UN Convention against torture. Victor Sechin’s suffering due to state obstacles in providing adequate pain treatment amounts at least to ill-treatment. States have the obligation to regulate, control and supervise healthcare practices in order to prevent denial of pain treatment, according to the UN Special Rapporteur on torture.

Dr Khorinyak’s case does not stand on its own. After her sentencing, colleagues and patients from all over Russia called her and spoke about similar situations in other regions. For example, Admiral Vyacheslav Apanasenko who, denied adequate pain relief, shot himself because he could not stand the suffering of his family. 1

Discussing efforts to improve palliative care in Russia in a recent interview, Olga Usenko said that adequate pain management is an essential human right and controlled drugs are absolutely necessary for medical and research purposes. Changes to the law on narcotic drugs therefore are badly needed. 2


  1. Olga Usenko, Russian Tragedy: To the blessed memory of Admiral Vyacheslav Apanasenko
  2. EJPC Palliative Care Policy Development Award: An interview with the 2014 winner, Olga Usenko. European Journal of Palliative Care 2014; (vol. 21.5): (225-227). 


  • In its Prague Charter, the EAPC advocates for the right to palliative care. Palliative care includes access to pain medication. Please sign the charter now!
  • You can read other posts on this subject by Adri Nieuwhof and Dr Olga Usenko on the EAPC blog
  • Read more about Dr Khorinyak’s trial and acquittal on ehospice.
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Nurses’ attitudes towards the practice of palliative sedation

Ebun Abarshi, an experienced researcher formerly on the EUROIMPACT Project, shares some findings from a systematic review of literature on the complexity of nurses’ attitudes and practice of sedation at the end of life.

Dr Ebun Abarshi

Dr Ebun Abarshi

When caring for patients with advanced and terminal illnesses, nurses, like other practitioners, sometimes have to manage symptoms that do not respond to optimal treatment and care within a given space of time. Even for the most experienced nurses, the demands of caring for such patients can be very challenging indeed. There is the need to address gaps and overlaps in communication following the breaking of bad news, to be part of the decision-making process, as well as to administer the sedative and monitor the patient and family until the very end.

Within the EUROIMPACT project, I aimed to describe the practice of palliative sedation in Europe. According to the EAPC, palliative sedation is “the monitored use of medication to induce decreased or absent awareness in order to relieve the burden of otherwise intractable suffering…”. For a small population of palliative care patients, the use of palliative sedation is an acceptable, ethical practice, when used in appropriate proportions. However, it is not without pros and cons.

Although systematic reviews had been undertaken amongst physicians and practitioners in the past, I considered it important to explore separately the attitudes of nurses because of the unique role they play in the management of patients at the end of life. A key finding from the review was that regardless of patient age, diagnoses, or care setting, the overall goal and intention of care remained to relieve suffering and ensure the patient was comfortable. Several of the nurses were in a dilemma as to whether to give the sedatives, when to give, and how much to give. Understandably, their level of education, expertise, and the roles they played per setting influenced their perception of the practice. However, many maintained a cautious attitude towards the practice, emphasising its benefit only as a ‘last resort’ measure.

The review suggested that nurses felt supported when the decision to sedate was discussed, when they were trained as to what to expect during and after sedation (eg failed sedation), and when operational guidelines were in place.

Further reading
Abarshi E, Papavasiliou E, Preston N, Brown J and Payne S. ‘The Complexity of Nurses’ Attitudes and Practice of Sedation at the End of Life: A Systematic Literature Review’, (on behalf of EUROIMPACT), J Pain Symptom Manage, 2014 May; 47(5): 915-925.e11. doi: 10.1016/j. jpainsymman.2013.06.011. Epub 2013 Sep 24.

Abarshi E and Payne S. ‘Awareness of the EAPC’s recommended framework for the use of sedation in palliative care: an internet-based survey’ European Journal of Palliative Care, 2014 (vol. 21.2). This article is available to download free of charge from the EAPC website.

Follow and contribute to the EAPC blog…
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HOSPICE Casa Sperantei – reaching the scattered homes

HOSPICE Casa Sperantei provides palliative care in Brasov and Bucharest and in two rural communities in Romania, caring for more than 2,600 patients annually (adults and children). Cristina Ghiran, Patient Services Director in Brasov, explains how the hospice team supports patients and families in rural communities.

Christina Ghiran

Christina Ghiran

If you want to make God laugh, show Him your plans. Sixteen years ago, when a nurse friend of mine decided she would work for a hospice, I said: “ How can you? I could never imagine myself working in a hospice.” But God works in many ways; one year later I found myself volunteering with patients who were having cancer surgery and I felt as if I belonged there. Then, I discovered a wonderful world when I joined HOSPICE Casa Sperantei: a world full of life, hope, emotions that were expressed freely in so many ways, love, a genuine attitude of caring, and a first-class professional team, working in harmony for the wellbeing of patients and their families.

Palliative care is provided in many different settings but the most privileged, and also challenging from a professional point of view, is that of home care – a place where you can see ‘the big picture’ and you are challenged to bring the warmth you find in the hospice into patients’ homes.

Members of the Fagaras rural hospice team

Members of the Fagaras rural hospice team

In a rural area, patients can be quite isolated, either because of the long distances to any available support or sometimes because of cultural reasons. For example, in some regions it is still considered that a chronic illness should be hidden. Furthermore, travelling long distances to get a specialist’s opinion and treatment is sometimes seen as a last resort when the disease is very advanced. Seeing the needs of a rural community, HOSPICE Casa Sperantei started a successful pilot project in 2008. The project in Fagaras and Zarnesti has continued and nowadays the rural teams care for 80 adults and 19 children. Patients receive a monthly average of 160 nurse visits and 80 doctor visits, as well as social support and, if necessary, they can be admitted to the hospice inpatient unit in Brasov for symptom control, respite or terminal care. We hope that through the Mobihope project (funded by the Vodafone Foundation within the Mobile for Good Global Programme), our patients in Fagaras and Zarnesti will soon have an out of hours helpline with their files accessible electronically to the team in Brasov.

Adrian’s story
Adrian is 21 years old and suffering from cerebral palsy; he was born prematurely to a 17-year-old and spent his first four years in an orphanage. His mother then took him home to a village 15 km away from Fagaras where, with her own mother’s help, she took care of him.

We first saw Adrian a few years ago; he was isolated and in bed, but happy to meet new people. His mother was hardly coping with his care and all the expenses, as she did not receive the legal financial benefits she was entitled to. 

Adrian and his grandmother (photo with kind permission of Adrian's family)

Adrian and his grandmother (photo with kind permission of Adrian’s family)

Being there for them, we learned from them and we taught them. We learned how somebody can regain their smile, how people can be thankful despite their poor situation; and by helping the mother and grandmother in their efforts to care for Adrian and teaching them ways of doing this, we empowered the family to achieve their potential. We helped them to obtain benefits that included money, as well as a suitable wheelchair for Adrian; and we helped him to go out and enjoy meeting other people, and being himself.

The mission of the hospice team is to rebuild a world shattered by disease. Our specialists reach out to bring comfort and hope to those experiencing a frightening diagnosis by providing good symptom control, nursing care and empowering patients and families through education, social integration and support.

Links and resources…

  • HOSPICE Casa Sperantei (in Romanian and English).
  • Click here to read other posts on the EAPC blog about the work of HOSPICE Casa Sperantei.
  • Key papers on palliative care in 23 languages – including five in Romanian – are now available to view or download free of charge from the EAPC website.
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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!


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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