Hospitalisations of nursing home residents with dementia in the last month of life

Dirk Houttekier, PhD, researcher at the End-of-Life Care Research Group of Vrije Universiteit Brussel (VUB) and Ghent University explains the background to his longer research article that was selected as Editor’s Choice in the October edition of Palliative Medicine.

Dr Dirk Houttekier

Dr Dirk Houttekier

Since the establishment of the End-of-Life Care Research Group at the Vrije Universiteit Brussel (VUB) and Ghent University, a prominent place has been given to large-scale epidemiological studies on place of death and transfers between health settings at the end of life. A high proportion of hospital deaths and frequent hospitalisations in the final stage of life are considered indicators of poor performance of end-of-life healthcare systems, with death and terminal care in the usual place of residence being considered a better outcome for the majority of patients. In the white paper defining optimal palliative care in older people with dementia, the European Association for Palliative Care recommends a conservative approach to hospitalisation of people with dementia, taking into account the associated risks and benefits, the goals of care and the stage of the dementia.

In people with dementia, especially in the more advanced stages of the disease, the place of residence is often a nursing home. In our previous work using death certificate data, we showed a decreasing trend in hospital death of people living in Belgian nursing homes, particularly in people who died from a dementia-related condition. However, the reliability of death certification of dementia is often debated and hospital death of people with dementia may be underestimated.

In our manuscript in Palliative Medicine on hospitalisations in the last month of life of people dying with dementia, we used a more reliable two-step method to identify nursing home residents dying with dementia. We showed that one in five nursing home residents dying with dementia were hospitalised in the last month of life, of which a quarter was admitted to an intensive care unit. Although hospitalisation in the last month of life of people with dementia residing in institutional care settings may be appropriate and unavoidable in certain situations, we were surprised about the high proportion of residents being hospitalised. The finding that the palliative care reference person of the nursing home was not involved in the hospitalisation decision in any of these cases is worrying and calls into question the model of palliative care in Belgian nursing homes.

Previously, we showed strong cross-national variation in place of death of people who died from dementia with hospital death being very low in the Netherlands. In Dutch nursing homes, care is managed by in-house specialist elderly care physicians and no longer by the resident’s own general practitioner, as is the case in Belgium. Is it time, given the high prevalence of dementia in many nursing homes, to consider the Dutch model in other countries?

You can download a free copy of the longer article…Oct PM cover
This post relates to the longer article, ‘Hospitalizations of nursing home residents with dementia in the last month of life: Results from a nationwide survey’ by Dirk Houttekier, An Vandervoort, Lieve Van den Block, Jenny T van der Steen, Robert Vander Stichele and Luc Deliens Palliat Med October 2014 28 (9);1110-1117. Published online before print 27 May 2014, DOI: 10.1177/0269216314535962.

EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (You may need to register or login to download this paper; if so, follow the instructions in the top right-hand corner of EAPC home page and scroll down to download the article). Click here to view other EAPC-originated papers.

Links and resources


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The art of social work in palliative care: EAPC publishes new White Paper on core competencies

Dr Sean Hughes, Research Associate, International Observatory on End of Life Care, Lancaster University, Lancaster, UK, explains the background to a longer article published in the November/December issue of the ‘European Journal of Palliative Care’.

Dr Sean Hughes

Dr Sean Hughes

My work in more than 15 years as a palliative care social worker took me into the homes and lives of numerous people and their families facing illness and death. It was – for almost all of them – a time in which everything was turned upside down; a time of crisis for many and a life-changing experience for all.

The situations I found myself in varied hugely. Sometimes people were near to death, alone and poorly supported, requiring urgent supportive services within hours or days. Others had more time to organise their affairs and to work on preparing for and adjusting to what lay ahead.

But what preparation had I received for this work and how was I trained? In truth, there was little that I could refer to. My generic social work training in the UK – while providing some focus on dealing with loss, family dynamics, and crisis intervention – did not equip me with the necessary knowledge and skills for working with dying people. Much of my learning was acquired as I worked with little formal guidance or instruction.

If this was true in the UK, what of the rest of Europe and beyond? How is the palliative care social work task conceived and implemented elsewhere? Do different models and practice approaches exist? What can we learn from each other and how can we improve practice overall? These – and other related questions – guided the work of the European Association for Palliative Care (EAPC) Social Work Task Force as it set out to develop a consensus document on the position of palliative care social work in our European setting.

Core competencies for palliative care social work in Europe: an EAPC White Paper – part 1, outlines the contexts of palliative care social work from a range of perspectives and makes the case for a competencies approach. It argues that social workers – with their focus on ‘mobilising the strengths and resources of clients, their families and communities’ – are a key component of the interprofessional palliative care team. Keen attention to the psychosocial needs of people as they approach the end of life has much historical precedence and remains an essential element of a truly comprehensive palliative care service.

We hope this paper (and Part 2, published in early 2015) will provide a basis for debate and a springboard for developing new core curricula for palliative care social work training. This is essential if social workers are to continue to contribute to improving the quality of life of dying people and their families across Europe.

EJPC NOVEMBER COVERTo read a copy of the full article…
This post relates to a longer article, Core competencies for palliative care social work in Europe: an EAPC White Paper – part 1, by Sean Hughes, Pam Firth and David Oliviere, published in the European Journal of Palliative Care 2014 (21.6). You can download a free copy of the article from the EAPC website. 

Readers with a web-based subscription to the European Journal of Palliative Care 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.

Read more about the EAPC Social Work Task Force: To examine the diversity of roles, tasks and education of palliative care social workers in Europe.

Coming up…
We shall be publishing a post on Core competencies for palliative care social work in Europe: an EAPC White Paper – part 2 early in 2015 when Pam Firth and David Oliviere will be contributing.

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Albania passes first palliative care laws

Ali Xhixha, MD, Team Leader, Ryder Albania Association, Tirana, Albania, explains how a small group of committed people really can change the world…

Ryder Albania team

Ryder Albania team (Dr Ali Xhixha is third from right in the back row)

It was brought to life 20 years ago. A child always brings changes into your life – good ones. Ryder Albania was conceived in Rome, Italy, then delivered in Tirana, Albania – the idea of a group of people who were dealing with pain every day of their lives. It took some time for the idea to take shape, but when it happened it was the right idea and it was shaped out of a passion for caring for those in need. Our efforts of so many years came to fruition on 16 October when Albania passed the first Palliative Care Laws that we hope will make a huge difference to terminally ill patients and their families.

Ryder Albania Association is a non-profit organisation providing care for patients with life-threatening illnesses. Established first in Tirana then in Durres, Ryder Albania Association is now the leading palliative care organisation in the country. In accordance with its objectives, Ryder Albania worked tirelessly lobbying and advocating to raise awareness of the decision makers, and drafting, in collaboration with specialists, important documents, strategies and plans.

Low- and middle-income countries, including Albania, face a disproportionate lack of access to palliative care and pain-relieving medicines such as morphine. We are faced with a lack of social support for patients and their families, yet in the developing world we see such great achievements in this respect.

Much hard work and effort went into lobbying, advocating and finally drafting the Palliative Care Law in Albania

Much hard work and effort went into lobbying, advocating and finally drafting the Palliative Care Law in Albania (Dr Stephen Connor is third from left)

But with the strong support of partners such as the Open Society for Albania, international expert Stephen Connor, the Albanian National Association for Palliative Care, and other care providers we were eventually able to initiate the process for presenting a law for palliative care. Much hard work and many efforts went into lobbying, advocating and finally drafting the Palliative Care Law in Albania.

On 16 October 2014, in a plenary session, our parliament voted and approved the Palliative Care Law in Albania. Every sentence of the draft that we (the working group) had drawn up was discussed in detail and plans were made to include as many benefits as possible for patients and families, and to develop and fund services (including non-governmental organisations). We also included plans to implement appropriate palliative care policies, to include palliative care as an integral component of education, to access palliative care, including the need for essential medicines, and to overcome legislative barriers to access opioids, to ensure that palliative care is an integral component of health system plans. This is the result of many years of advocacy and sustained efforts of many palliative care contributors. We are privileged to have been part of the drafting and the process.

This sweet child of ours has given hope for so many patients in Albania who need care and pain relief.




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Introducing Dr Julie Ling: Incoming CEO of the EAPC

Dr Julie Ling, PhD, takes up her new role as Chief Executive Officer of the European Association for Palliative Care on 1 January 2015. Dr Ling tells us more…

Dr Julie Ling: Incoming CEO of the EAPC

Dr Julie Ling: Incoming CEO of the EAPC

I am delighted to be asked to contribute to the EAPC blog in my new role as incoming CEO of the EAPC. I would like to acknowledge the work of my predecessor, Heidi Blumhuber, who has been CEO of the EAPC for the past twenty-five years and who has overseen the establishment, growth and development of the organisation.

I originally qualified as a nurse. Since then, I have worked in palliative care in England and Ireland for the past twenty-five years in both adult and children’s palliative care. During this time I have worked clinically, in research, in policy and also in management. I have represented palliative care at a national level most notably during my time as an adviser in the Department of Health, in Dublin. In this post I was involved in the development and implementation of the Irish palliative care policy and also involved in several international initiatives.

I am currently a member of several national palliative care groups in Ireland and for the past six years I worked at a European level though my contribution as a member of an EAPC taskforce on children’s palliative care. I was chair of the EAPC taskforce on education in children’s palliative care, which has recently completed its work resulting in the publication of the EAPC’s White paper on core competencies for education in paediatric palliative care.

The aim of the EAPC is to promote palliative care in Europe and to act as a focus for all of those who work or have an interest in this field of healthcare. The EAPC is an organisation that prides itself on professional representation and nurtures the development of the specialty through research and education. I understand the essential role of research and have worked in many aspects of research in palliative care in particular during my time working at the Royal Marsden Hospital in London. More recently, I completed a PhD in children’s palliative care. I have written and published on various aspects of palliative care and am also on the editorial board of the International Journal of Palliative Nursing.

Since starting my career in palliative care I have been an active member of the EAPC and over the years have attended many of the EAPC congresses. Within the palliative care community these events are generally regarded as the premier palliative care conference and they remain essential events for both knowledge exchange and for networking. I look forward to working with the EAPC Board of Directors and with those elected at the forthcoming congress in Copenhagen (8-10 May 2015).

As CEO I am committed to building on the strong foundations of my predecessor and continuing the work of the organisation to ensure that over the coming years the EAPC moves forward in a strategic and meaningful way in order to fulfill its vision, and continues to meet the needs of the healthcare professionals it represents for the benefit of patients and families.




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EAPC Board Matters: Meeting in Munich

Dr David Oliver, Consultant in Palliative Medicine, Wisdom Hospice, Rochester, UK; Honorary Reader, Centre for Professional Practice, University of Kent, and EAPC Board member, sums up some of the key matters discussed at the November Board meeting of the European Association for Palliative Care on 1-2 November 2014.

Red squirrel in the grounds of Schloss Fuerstenried in Munich, where we held our autumn board meeting

Red squirrel in the grounds of Schloss Fuerstenried in Munich, where we held our autumn board meeting

The EAPC Board of Directors met at the Schloss Fuerstenried in Munich, Germany, a Christian retreat and conference centre surrounded by beautiful gardens and the occasional red squirrel! The agenda was looking forward to 2015 and the main issues discussed were:

Appointment of new chief executive officer
Dr Julie Ling has been appointed as CEO of the EAPC, starting on 1 January 2015. Julie has wide experience within palliative care and will be based at an EAPC office at Our Lady’s Hospice in Dublin, Ireland.

Heidi Blumhuber, the present CEO, will continue to work part time until the EAPC Congress in Copenhagen and will retire on 10 May 2015 after 25 years’ service. Members of the Board expressed their thanks to Heidi, who has been involved in the EAPC from its inception and has supported the Board and members so well. We shall miss her greatly and wish her well for the future.

World Health Organization
The Board welcomed the resolution from the World Health Assembly in May 2014 proposing palliative care be incorporated into healthcare systems. Work continues to help this become a reality across Europe.

Congresses – keep the date

  • The 14th EAPC World Congress – Copenhagen, Denmark, 8-10 May 2015. The invited part of the programme is finalised and offers a wide choice on all aspects of palliative care. Register now
  • 5th International Seminar of the European Palliative Care Research Centre and the EAPC Research Network – Leeds, UK, 15-16 October 2015. (Website under construction).
  • 9th EAPC World Research Congress – Dublin, Ireland, 9-11 June 2016. (Website under construction).

Social media activities are growing
Short, topical pieces from across the world are published twice a week on the blog, with an increasing number from Eastern and Central Europe. To receive an email alert each time a post is published, sign up on the home page. Activity on EAPC Facebook, Twitter and Linkedin is growing fast, connecting you to latest research, congresses, publications and global advocacy.

White papers
A White paper on Euthanasia and assisted suicide is in preparation – updating the EAPC document of 2003. This should be available for the Congress in Copenhagen and published in 2015.

EAPC task forces
Task forces will be publishing further papers on Spiritual care, Bereavement care provision, and Patient-reported outcome measurement in the coming months. Several task forces are looking at different aspects of palliative care – including some joint work with the European Academy of Neurology, The European Union Geriatric Medicine Society, European Forum for Primary Care and the European Association of Cardiology.

We are looking forward to the future with a new Board of Directors following elections in 2015. We welcome nominations for the Board elections (closing date 1 February 2015) – if you are interested contact your local organisation. Nominations are welcomed from all professions involved in palliative care and especially those in Eastern and Central European countries.

The Board welcomes comments from members and seeks to look at the development of palliative care throughout Europe, and in collaboration with other organisations across the world. This is your opportunity to become more involved!

Anyone is welcome to contact the EAPC President, Professor Sheila Payne.


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Managing cholestatic pruritus in palliative care

Dr Claire Magee, Consultant in Palliative Medicine, Coventry Community Specialist Palliative Care Team, Coventry, UK, explains the background to her longer article published in the November/December issue of the European Journal of Palliative Care.

Dr Claire Magee

Dr Claire Magee

Pruritus or itch may not be the commonest symptom seen in palliative care patients, but when present it can cause considerable discomfort and severely impact on quality of life. In my work as a palliative medicine clinician the handful of patients I have cared for with severe pruritus remain in my memory. The symptom is distressing and can lead to sleep deprivation, social embarrassment and significant psychological problems. In addition, the scratching can lead to reduced skin integrity and subsequent infections. There are notable similarities between pruritus and pain; perception and tolerance varies greatly with both the patient’s physical and emotional state contributing.

In palliative care there are numerous reasons why patients may experience pruritus, one of which is cholestasis (a reduction in bile flow). Others include uraemia, opioids, haematological disorders, solid tumours and skin conditions. Identifying the underlying cause is key to forming a treatment plan, but in reality pruritus is often multifactorial. The pathophysiology is complex and poorly understood so together these issues make management a real challenge.

When faced with symptoms such as pain, breathlessness or nausea, most professionals working with palliative patients will be familiar and comfortable with the potential treatment options. However, when managing a patient with pruritus confidence can be low with limited exposure and a lack of consensus on treatment strategies contributing to this. I can recall a patient with cholestatic pruritus where numerous drugs were tried one after another in a desperate attempt to manage his symptoms. As part of an MSc in Palliative Care I chose to conduct a systematic review on the management of cholestatic pruritus with the aim to create a guideline for use in palliative care, based on the available research evidence.

It is notable that most of the literature refers to studies in chronic liver disease so the degree to which this can be reliably extrapolated to palliative care is uncertain. I discuss how non-drug measures and topical drug treatments should always be considered. Dry skin is often an exacerbating factor so simple measures such as topical emollients can bring significant relief alongside topical drugs such as menthol lotion. Where there is obstruction of the common bile duct, stenting may be a suitable palliative procedure preventing the need for drug treatment and the subsequent risk of side effects. Several targeted drug treatments should be considered. In the paper I discuss the role of naltrexone, rifampicin, cholestyramine, ondansetron, sertraline, paroxetine and mirtazapine with a proposed treatment flow chart. An individualised approach to management will always be needed, but by highlighting key considerations and potential drug options the paper aims to support decision-making.

EJPC NOVEMBER COVERRead a copy of the full article in the November/December 2014 issue of European Journal of Palliative
This post relates to a longer article, ‘Managing cholestatic pruritus in palliative care’, by Claire Magee, published in the November/December 2014 issue of the European Journal of Palliative Care (vol. 21.6).  If you have a web-based subscription to the journal you’ll be able to 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. (Another good reason for joining the EAPC!)

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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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