Advance Care Planning and Advance Directives: A clear and concise expression of the patient’s wishes regarding personal care and medical treatment or therapeutic interventions

Barry Ashpole

Barry Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada. Here, he presents a selection of abstracts that highlight new findings and trends in Advance Care Planning and Advance Directives in the field of palliative care and end-of-life care. 

A special opportunity for our readers to access free of charge a selection of full-text journal articles – something to keep you busy throughout the Christmas and New Year break! You may need to log in or subscribe for some of the papers.

Advance directives for dementia: Honoring patient wishes when you don’t know what they are

Webb WA, Mitchell T, Nyatanga B et al. Nursing Standard, 2018; 32(27): 53-63.

Advance care directives (ACD) were originally developed to provide guidance to family and healthcare practitioners about end-of-life (EoL) decisions for patients faced with a terminal prognosis. Because of the extended time frame of dementia, however, the standard ACD applied to managing negative outcomes of disease is often left unconsidered as long as the patient still has cognition. In a commentary published in JAMA in December 2017, Gaster & Larson point out that ACD are not “helpful” within the context of loss of cognitive function, and typically address specific conditions that have more definable prognoses involving pain and loss of consciousness. Because quality of life in dementia can be maintained with assistance, family and caregivers have difficulty determining when and how EoL decisions should be made.

A website supporting sensitive religious and cultural advance care planning (ACPTalk): Formative and summative evaluation

Pereira-Salgado A, Mader P, O’Callaghan C et alJMIR Research Protocols, 2018;7 (4):e78.

This study, based on the analysis of interviews with general practitioners, and primary health and palliative care nurses, demonstrates that all facets of the context, input, process, and product framework can be effectively applied for evaluation of eHealth technologies, specifically advance planning (ACP) websites, with assessment of ACPTalk. Results show that most users viewed the website positively in terms of design, content, and functionality and also found it useful to increase knowledge and preparation for ACP with people of different religious and cultural backgrounds. Further ACP website development should consider the recommendations derived from this study, including multilingual translations and the development of comparable culturally sensitive websites tailored for patients and families, which may assist in strengthening understanding and cognizance of ACP among these populations.

Dying in care homes, when advance care planning requires wraparound care

Good C. Palliative Medicine, 2018; 32 (2): 312-313.

Entry to a care home often occurs when other services are no longer appropriate. The older person is unlikely to benefit from curative treatments and their needs have exceeded what can be provided within their home. It signals someone is in the last year(s) of life. Research articulates well the palliative care (PC) needs of residents and tested and developed education and training interventions that are context-specific and dementia-sensitive. Less well articulated is how the different configurations of services that work with and around care homes improve, sustain or hinder end-of-life care (EoLC) provision to care home residents. What kind of infrastructure and “wraparound” support is needed to ensure continuity, consistency and management of the inevitable uncertainties that arise when providing PC to this population?

A review of paper-based advance care planning aids

Bridges JFP, Lynch T, Schuster ALR et alBMC Palliative Care, published online 27 March 2018.

This study identifies a need for paper-based aids that support and empower patients to initiate meaningful advance care planning (ACP). The findings suggest that to meet patients’ needs and create patient-centered ACP aids, active patient involvement is a necessary, and often missing, component and ACP aids need to explore framing beyond specific end-of-life care situations. By identifying and classifying different categories of paper-based ACP aids, the study provides a useful framework that clinicians might use to help inform the selection of an ACP aid that is most appropriate to their patients and to alternative decision makers. Additionally, the authors’ findings have helped guide the development of a new ACP aid, and have provided a framework by which future ACP aids might be measured.

Advance directives as a tool to respect patients’ values and preferences: Discussion on the case of Alzheimer’s disease

Porteri C.BMC Medical Ethics, published online 20 February 2018.

The prevalence of advance directives (AD) among old people, including patients with dementia, is low. Physicians rely on their medical judgement and family view more than on patients’ expressed preferences. Few and not conclusive data exist on the potential positive impact of AD on the treatment of patients with severe cognitive impairment or dementia, for instance regarding avoiding tube feeding or transfer from nursing home to hospital and receiving palliative care. To promote and honor AD in dementia is not in contrast with the acknowledgement of the full dignity of the person with dementia, nor with the call to the personal and societal duty to care for the others. Not to honor a demented individual’s directive would be a form of discrimination towards those patients.

Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: Which is more likely to reflect the older adult’s preferences?

Bravo G, Sene M, Arcand M. Journal of Medical Ethics, published online 9 March 2018.

Eight percent of the elders (together with their proxy) who participated in this Canadian study – 157 community-dwelling, decisionally competent adults aged 70 years and over – had completed an advance directive (AD). Secondary analysis of the interviews suggest an AD might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. Choices they made were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across different scenarios. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.

Provider tools for advance care planning and goals of care discussion: A systematic review

Myers J, Cosby R, Gzik D et al. American Journal of Hospice & Palliative Medicine, publish online 12 March 2018.

Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning (ACP) or goals of care (GoC) discussions. Effective ACP conversations, at both the population and the individual level, require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. The specific questions that helped to shape this systematic review were intended to reflect the elements clinicians find particularly challenging, that is, introducing, facilitating, and documenting both ACP and GoC discussions. There is a need for research focused on GoC discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate GoC from ACP.

Italy’s new advance directive law: When in Rome …

Sulmasy DP. JAMA Internal Medicine, published online 12 March 2018.

Although all human beings share the same biology, the political context of medical practice, like all politics, is notoriously local. So, while some might be surprised to learn that Italy only adopted its first advance directive legislation in the closing days of 2017, such surprise would reflect a kind of naive parochialism. Rome is not Washington DC. The bill, which passed the Italian Senate in December 2017 after three decades of debate, assumed the force of law on 6 January 2018. The law establishes a right to refuse tests and treatments, a right to palliative care, and provides for living wills and the naming of medical proxies. The protracted legislative course reflects a complex amalgam of culture, religion, language, politics, ethics and medicine.

The voice is as mighty as the pen: Integrating conversations into advance care planning

Bailoor K, Kamil LH, Goldman E et al. Journal of Bioethical Inquiry, published online 17 March 2018.

While written advance directives (AD) contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an advance care planning (ACP) tool and to increase integration of such discourse into ACP policy as adjuncts and complements to written AD. The authors review current legislation and dissect how documentation of spoken interactions might be integrated and considered. They discuss specific institutional policy changes required to facilitate implementation and also explore pertinent ethical issues.

Advance care planning discussions with adolescent and young adult cancer patients admitted to a community palliative care service: A retrospective case-note audit

Fletcher S, Hughes R, Pickstock Set al. Journal of Adolescent & Young Adult Oncology, 2018,7(1):112-119.

Adolescents and young adults (AYA) with cancer require specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions warrant age-appropriate adaptation, yet, there is little research available to inform best practice for this group. This study indicates that end-of-life care preferences may differ from those of the adult population and need to be captured and understood. For example, the desire to pursue all available oncological therapies was documented for 14 (51.9%) AYA patients studied compared with 9 (24.3%) of the adult group studied. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.

More about the author

Barry Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of health care, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

Enjoy the holidays and a very Happy New Year!

The EAPC blog is taking a break over the holiday period but we shall be back on Wednesday 2 January 2019 when Renata Marđetko, Palliative Care Coordinator, Medimurje, describes how a change in the law is leading to real progress in palliative care in Croatia.


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A countdown to #EAPC2019 – 16th World Congress of the European Association for Palliative Care

Last week in Berlin, the Scientific and Local Organising Committees of the 16th World Congress of the European Association for Palliative Care (EAPC) met to plan for next year’s world congress. Sébastien Moine and Anne Letsch, on behalf of the Scientific and Local Organising Committees, remind you that it’s only 155 days to go!

Anne Letsch and Sébastien Moine.

With an eventful year coming to an end, we send special greetings from #EstrelBerlin – the Estrel Hotel and Convention Center in Berlin, a great venue for #EAPC2019 – where we recently met to plan next year’s 16th World Congress of the European Association for Palliative Care.

The Scientific Committee (SCi-COM) of #EAPC2019 worked intensely, rating more than 1,400 abstracts for #EAPC2019 and preparing an inspiring programme with 25 different free communication sessions. We express our heartfelt appreciation to all authors and to all reviewers, who did a great job. Congratulations to all speakers chosen for the free communication sessions and poster presenters, who were  announced last week.

Please visit the congress website to get an overview of what’s planned so far. Following the congress theme, ‘Global Palliative Care — Shaping the future’, leading researchers and practitioners from India, New Zealand, Rwanda, Switzerland and the United Kingdom will explore how palliative care fits with the current global health agenda.

Members of the Scientific and Local Organising Committees meeting in Berlin. From left to right: Lieve Van den Block (Belgium), Lukas Morin (France), Julie Ling (EAPC), Irene Murphy (Ireland), Phil Larkin (EAPC), Anne Letsch (Germany), Malgozata Krajnik (Poland), Saskia Teunissen (The Netherlands), Libby Sallnow (United Kingdom), Christoph Ostgathe (Germany), Sébastien Moine (France).

Countdown to Berlin …

The end of the year is for many of us a time to focus our expectations for the year ahead – don’t forget to mark your calendar for 2019!

There are only 13 days left till 2019 – only 58 days left to benefit from the ‘Early bird’ registration… and only 155 days left till #EAPC2019 starts in Berlin from 23 to 25 May 2019.

Use the time at the end of the year to tell colleagues and friends about #EAPC2019. Register now and benefit from reduced rates, book your travel and accommodation at #EstrelBerlin or other #HotelsBerlin and set aside some time to #visitberlin. Join us in Berlin at #EAPC2019 and celebrate with us the diversity of Global Palliative Care.

Things are hotting up for the Sci-Com and the Local Organising Committee as we prepare for the congress and hope for both a unique scientific and Berlin experience.

We wish all of you a very happy new year 2019 and very much look forward to welcoming you at #EAPC2019 in Berlin.



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Behind the lines: Teaching palliative care in Gaza

Dr Jane Bates, Dr Mhoira Leng and Dr Tony Jefferis describe their palliative care teaching visit at the Islamic University of Gaza.

Dr Jane Bates, Dr Mhoira Leng and Dr Tony Jefferis with members of the teaching staff of Islamic University of Gaza and fourth year medical students who have presented their research work.
Jane and Mhoira (2nd and 3rd from the left); Dr Khamis Elessi, lead for palliative care in Gaza/lead for evidence-based medicine and rehabilitation (centre); Tony (6th from left); Dr Reyes, clinical teaching assistant (far right).

A group of 130 boisterous medical students greeted us in a slightly cramped classroom: girls on the left, boys on the right. I was part of a small team headed by Mhoira Leng and Tony Jefferis on a Cairdeas International/Global Health Academy, Edinburgh University visit to the Islamic University of Gaza (IUG), which took place in October 2018. Mhoira and Tony have visited several times over the past five years to support undergraduate teaching and see how palliative care can be developed locally. In recent years, entry to Gaza has been very restricted, necessitating considerable preparation of documents and processing of border permits prior to travel. This visit was facilitated for us by the Palestinian Children’s Relief Fund (PCRF).

On arrival we met the Dean and the lead for palliative care, Dr Khamis Ellesi, and set to work with classroom teaching, which took place each morning on the campus at IUG. Topics included: introduction to palliative care, communication skills, breaking bad news, pain assessment and management, symptom management and self-care. The classroom context was very familiar, though the rapid expansion of medical student numbers at IUG meant that we had to think on our feet to keep control, especially during some of the more interactive sessions. Afterwards, we transferred for small-group bedside teaching at European Gaza and Al Rantisi hospitals in Gaza City.

A specially arranged ‘scientific evening’ attended by local faculty, students and officials from the Ministry of Health provided a focus for the commemoration of World Hospice and Palliative Care day with presentations by students on pain audits they had completed. Mhoira and I spoke about our own palliative care research.

Impact of current situation on patients and families

The broader impact of the current situation in Gaza became more apparent as we listened to the stories of patients and families on the wards. An emaciated 30-year-old man with a massive bony tumour had been using intravenous boluses of morphine as the only available option to get some relief from his pain – that was, until it had run out. His mother expressed her distress saying,

“Now I am the morphine my son needs. I go to the pharmacy every day to see if it is available, but I come back without it.”

Many patients were waiting in hospital during the long delays for radiotherapy and other treatments, despite these being available less than two hours’ drive away in Jerusalem. The Gaza-led steering group for palliative care, which includes Mhoira, is working to develop improved programmes and engaging with hospital management, Ministry of Health officials and the World Health Organization to help move this situation forward.

Despite huge challenges, hospitality in Gaza is warmly expressed and courteous – involving the drinking of frequent small cups of strong Arabic coffee (made with cardamom). It was my first experience of being served coffee whilst delivering a teaching session! As we left, we encouraged our colleagues at the medical school to develop a palliative care interest group amongst the students to support sustainability and interest amongst future medical graduates. Though our time at IUG seemed short, our hosts were grateful for the support we gave by visiting and teaching together. We hope and pray that access to quality palliative care (including appropriate pain medication) will soon be the norm for all who need it in Gaza.

More about the authors 

Dr Jane Bates is a palliative care doctor based in Malawi. Contact Jane by email.
Dr Mhoira Leng is medical director of Cairdeas International Palliative Care Trust and senior advisor for palliative care to Makerere University in Uganda. Contact Mhoira by email.
Dr Tony Jefferis is a retired ENT (ear, nose and throat) surgeon and a member of PRIME International.


Coming soon on the EAPC Blog – Dr Mhoira Leng will be writing more about palliative care in Palestine …

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From Rio Grande to Astana: The dream of palliative care as part of Universal Health Coverage must include primary care

In a recent post, Katherine Pettus, Sébastien Moine and Gulnara Kunirova explained why the Declaration of Astana’s decisive inclusion of palliative care as an essential service supports integration of our discipline into universal health coverage.  

In this post, we hear from Santiago Rodríguez Corrêa, a family physician, and Carla Mazuko, a nurse, with Estar ao Seu Lado – Cuidados Paliativos na Atenção Primária’, a project to promote palliative care in primary care and the community, in Rio Grande in the south of Brazil.

Santiago Rodríguez Corrêa and Carla Mazuko

The message in the title of this post is strong and clear. And that was the message conveyed at the Global Conference on Primary Care held in Astana, Kazakhstan, on 25 and 26 October 2018. More than just words, the message contains the key to reach the final objective to provide palliative care for all. But how can we do it given the many challenges facing primary care across the world?

During the last 40 years since Alma-Ata, solutions have not kept pace with the ever-increasing number of new challenges. And this is certainly true in the case of primary care and palliative care. The low funding of primary care, differences in relationship to its provision across the world, low degrees of awareness about what palliative care is, and the many doubts around the subject are just some of the many challenges.. Furthermore, many situations related to palliative care in primary care need to be studied but from the point of view of primary care.

Dr Santiago Corrêa (extreme right) is pictured with members of the International Association for Hospice and Palliative Care (IAHPC) delegation in Astana: (Left to right) Dr Sébastien Moine, Ms Gulnara Kunirova and Dr Katherine Pettus.

Yet, despite all the obstacles, there has been a fantastic step forward when we consider that palliative care is now included in the new Declaration of Astana. This huge achievement is down to the enormous advocacy efforts of many colleagues. Now is the time to keep moving forward and offering this approach to the biggest stakeholders: the person needing palliative care in primary care and their family members. To do that, we must plan and implement short-, middle- and long-term goals in accordance with the ideas proposed in the Declaration of Astana.

Brazil is making progress in palliative care. In particular, the process to build a National Policy, which started last year, is now complete and recently one important step was taken to finally achieve its implementation. However, as the Declaration of Astana supports the achievement of universal coverage of health for all it should be specifically focused on primary care.

Now that we have the basis for a strong policy that primary care should include palliative care we must develop ways to integrate primary care services into specialist services. We must enable wider and fairer access to appropriate specialist services for everyone in Brazil who has complex needs, and to create a greater care environment for all.

The city of Rio Grande celebrates its first ‘Palliative Care Municipal Week’.

Here in the Rio Grande, in the south of Brazil, we have continued our efforts to improve the skills of primary care professionals with courses for physicians and nurses. You can read about some of our past initiatives here. This year, the city celebrated its first ‘Palliative Care Municipal Week’ with seminars on topical subjects including: ‘Palliative care and the Catholic Church’, ‘Integrative practices’ and a major discussion about the legacy of Cicely Saunders.

We used the image of tied ribbons around the heart (pictured above) as the symbol for the week to highlight the dream of Universal Health Coverage by 2030. This symbolises our own dreams to unite Rio Grande to Astana and the hope that the new Astana Declaration will guide us to a future based on equity, compassion and universal health coverage for all – because ‘everyone matters’.

Links and resources


Using a holistic approach to reduce distress due to breathlessness in people with advanced disease

Researchers, clinicians, and service user representatives at Cicely Saunders Institute, King’s College London, have been gathering evidence on services for people with chronic breathlessness and advanced disease. Their findings are now published in Thorax and available in open access. Dr Sophie Miller, Palliative Medicine Registrar and King’s College London MSc student, explains.


“With my illness, breathlessness is the main and most problematic symptom for me. Also my mother had suffered from breathlessness – she had terminal cancer. And my 90-year-old uncle now currently suffers from it – he has asbestos on the lungs. It is such a debilitating symptom, having a huge impact on quality of life. Anything to reduce the impact of this symptom would have been a great help to me and my family.”– Margaret Ogden, patient and carer representative.

Dr Sophie Miller

Breathlessness affects nearly all people living with chronic respiratory disease, and many others with advanced heart, neurological and malignant diseases. Most often with the people I see in practice, breathlessness persists despite optimal management of the person’s underlying condition. As Margaret’s quote illustrates, the ensuing anxiety, depression and social isolation are debilitating, impacting patients and their families and carers. (1, 2)

For professionals, identifying effective treatment options for breathlessness can be challenging. Pharmacological options are limited and services like supervised rehabilitation programmes can be difficult for people with advanced disease and high levels of disability to engage with.

So, how can we best support people living with chronic breathlessness in advanced disease, and their families?

Together with a team of researchers, clinicians, and service user representatives, we’ve been gathering evidence on what have been called ‘holistic’ services for people with chronic breathlessness and advanced disease.

These services typically draw upon palliative care, working together with multiple specialities and professionals. Treatments are selected based upon physical, psychological, social and spiritual needs of individual patients and their families, with a focus on non-pharmacological therapies (including breathing exercises, psychological support, hand-held fan and carer support). Patients typically receive these services for four to six weeks through face-to-face and phone contact. A leading example of one such service is the Breathlessness Intervention Service currently available in Cambridge:

Our review, published in Thorax, (3) identified 18 services like this across six countries. Our meta-analysis showed these services resulted in significant reductions in patients’ distress due to breathlessness and depression symptoms. Plus, there was a trend towards reduced anxiety and an improved sense of mastery over breathlessness. Although there were inconsistent effects on questionnaire measures of health status, physical function, or quality of life, patients and carers who had accessed these services described in interviews that they valued the tailored education, self-management interventions, and expert staff providing person-centred, dignified care.

As a palliative care clinician, I believe these holistic services can offer something valuable for the patients we manage who are just well enough to get out of the house, but not able to complete a supervised rehabilitation programme over multiple weeks. Further work is needed to identify whether individual components or the whole package are required to achieve the benefits seen, and to offer greater insight into cost effectiveness. However, whether adopting these as a new service or integrating the main principles and core components into existing services or clinics, this approach can prompt earlier integration of palliative care, and support people like Margaret, and their families, to live better with breathlessness.

To find out more

You can find more information and resources about supporting people with breathlessness, including free resources, from the Cicely Saunders Institute, King’s College London.

References and links

  1. Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: A qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliative Care 2011; 10:15.
  2. Farquhar M. Carers and breathlessness. Current Opinion in Supportive and Palliative Care 2017; 11 (3).
  3. Brighton, LJ, Miller, S, Farquhar, M, Booth, S, Yi D, Gao W, Bajwah S, Man WD, Higginson IJ, Maddocks M. Holistic services for chronic breathlessness in people with advanced disease: a systematic review and meta-analysis. Thorax 2018; 0: 1-12.
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Encouraging clinically and research relevant case reports and clinical reviews: Launching Palliative Medicine’s new author instructions and types of submission

Sandra Martins Pereira and Sarah Yardley, Screening Editors, and Catherine Walshe, Editor-in-Chief, of Palliative Medicine, unveil the new author instructions and explain how to make your submissions focused and relevant.

Clockwise left to right: Sandra Martins Pereira, Sarah Yardley and Catherine Walshe

Do case reports in palliative care still matter? The short, unanimous answer during our editorial board meeting was “Yes.” So, why do we tend to reject them at editorial screening? This second question was less straightforward … After a joint reflection about why we rejected case reports so frequently, when we considered the format relevant, we concluded that this happened mostly because of a couple of reasons. First, submitted case reports were often not as novel in the international literature as the authors thought, so we judged the submission to be local reflexive practice. Second, most case reports concluded with a self-evident statement along the lines of “and therefore this is an area of research” rather than critically identifying what specific research would have most potential for impact.

Following our discussion, it was clear that we wanted to continue publishing case reports. Therefore, we opted to create new author guidelines to help authors make submissions focused and relevant. A few main ideas came out of our brainstorming:

  • First, we are a research journal. To be interesting for us, case reports (or series) have to provide close analyses of practice-based examples, giving insights into what happens on the clinical frontline when research evidence-based options have been exhausted, and identify potential ‘golden nuggets’ for further research exploration. (It is not enough to simply state that we need more research – we doubt any study, let alone case reports, will ever conclude that no more research is needed).
  • Second, we prefer case series instead of single case reports. From our experience, prospective planning of data collection usually strengthens the findings and implications. So, you might come across an interesting case – can you then monitor and, if needed, team up with others to look at the questions it raised and the approaches taken in other cases as these occur? Except in the rarest of issues this should be possible.
  • Third, case reports and series are more helpful for research and clinical practice if they provide clear statements and information on what we already know (from current evidence we can conclude …); what this case report or series adds (we should do this … we shouldn’t do this … and we’re not sure about this …) and what are the implications of this case report or case series (the answer to the challenging “so what?”).

A new type of submission – ‘Practice reviews’

Finally, our discussion identified a potential need for a new type of submission: We are calling this ‘Practice reviews’, and hope it will provide a format for a ‘stock take’ or overview of the current ‘state of the science’ in an area of practice, covering newly emergent ‘hot topics’ and ethical issues as well as clinical concerns such as ‘orphan’ symptoms.

Practice reviews remain distinct from our review paper submissions so check out the new author guidelines to learn more. We are most grateful to our colleagues at Perspectives on Medical Education for allowing us to adapt their successful format.

So, might you have research and clinical relevant cases or case series to share and discuss with our readers? Might you have ‘stock-take’ or emergent ‘hot topics’ to discuss in the form of a practice review? We look forward to receiving your submissions and, perhaps, your article can become one of the ‘Editor’s choice’ posts for the EAPC blog!


More about the authors
Sandra Martins Pereira is a Screening Editor on the Board of Palliative Medicine. Sandra works as a Senior Researcher and Invited Lecturer at the Institute or Bioethics, Universidade Católica Portuguesa.
Contact Sandra by email.  Twitter: @SandraMartinsP2

Sarah Yardley is a Screening Editor on the Board of Palliative Medicine. Sarah works as a Consultant in Palliative Medicine for Central & North West London NHS Foundation Trust, UK, and is an Honorary Senior Clinical Lecturer in the Marie Curie Research Department, University College London.
Contact Sarah by email.  Twitter: @lavendercrew

Catherine Walshe is the Editor-in-Chief of Palliative Medicine. Catherine is Professor of Palliative Care and Director of the International Observatory on End of Life Care, part of the Division of Health Research, at Lancaster University.
Contact Catherine by email. Twitter: @cewalshe 

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Council of Europe launches latest report on palliative care in Europe

The European Association for Palliative Care (EAPC) has been integral to the development of this new report. Professor Phil Larkin, President of the EAPC, explains.

Prof Philip Larkin

The Council of Europe has launched its latest report on palliative care in Europe. The report provides an update to the 2009 resolution 1649, ‘Palliative care: a model for innovative health and social policies’, on the current trends in palliative care models and highlights critical issues that may be of specific interest to all elected European parliamentarians. It expresses regret that much of the 2003 (24) Council of Ministers’ recommendations on palliative care remain unaddressed with continuing lack of access to pain management and palliative care services across European Union states.

EAPC has been integral to the development of this new report. It was fortunate that the Council rapporteur, Senator RónánMullen, is Irish and so, as President, I was able to meet him on several occasions both in the Dáil (Irish Parliament) and in Galway in the West of Ireland, where we both live. I subsequently presented at the European Parliament in Brussels on the development of palliative care across Europe with a focus on the important issues of early integration of palliative care, models of integrated palliative care and the expansion of palliative care across the breadth of clinical need, beyond cancer. Dr Tiina Saarto, EAPC Board Member, and I were then invited to present in Strasbourg at a session to introduce the report to Council members and agree a fact-finding mission undertaken by Senator Mullen.

Although focused on only one country (Spain), the Council chose this as it gave examples of the range of possible palliative care provision – hospital based, home care, day hospice and hospice inpatient centres. It also offered evidence within one country of where services supported at a governmental level, albeit at local level, can flourish, and where the absence of that support can inhibit any such development.

‘The Provision of Palliative Care in Europe 2018’ is available to download in English and French.

In many ways, this new report supports the findings of its earlier version and calls for action. It is underpinned by the current World Health Organization definition and advocates for the World Health Assembly 96.18 resolution, which remains a key directive for palliative care as an essential component of health care. However, it makes specific note of the impact on healthcare services when palliative care as an appropriate care alternative is not introduced. The report also notes the role of informal caregivers where there is often an expectation on behalf of the system that they take such responsibility without adequate resources or support to do so. Sadly, an all too familiar scenario for those of us involved in community care and home care in particular. It also makes a specific call for respite services which, although always seen as an integral part of palliative care, may have been diminished as the complexity of care needed by patients is such that beds are at a premium and access limited. Overall, this report strengthens the message that palliative care is a human right to be upheld by political and health service providers.

I would like to take the opportunity to thank those colleagues in Spain who graciously gave of their time to meet Senator Mullen, notably members of La Sociedad Española de Cuidados Paliativos (SECPAL), Professor Xavier Gómez-Batiste, Dr Javier Rocafort and Dr Emilio Herrera (there may well be others).

The work of EAPC is essentially one of advocacy and lobbying – using our organisational position to leverage political dialogue and exchange to further the visibility of palliative care and address critical issues to improve people’s experiences of living with and dying from complex, life-limiting illness.This is perhaps a role for which we are less well known, but in this increasingly crowded platform of palliative care agencies it is important that our voice, on behalf of those who are mainly the practitioners of care services in Europe, is heard and valued. I would imagine that as our organisation develops in the coming years, this will need to be a clear component of what we are seen to be doing in the future. Our proximity to the European Parliament in Brussels gives us an excellent opportunity to make sure that the voice of EAPC is heard clearly at the appropriate political table.

I urge you to read the report and reflect on the recommendations for your own country or region. I hope that its findings give insight that can be adopted and shared amongst service providers. But particularly, I hope that this new report provides you with a framework to engage locally and nationally at a political level, to say that palliative care is an essential component of the care that all European citizens deserve and not an ‘added extra, if possible’.


Posted in ADVOCACY & POLICY, EAPC Board Members, NATIONAL & INTERNATIONAL REPORTS | Tagged , | Leave a comment