The Palliative Care Bridge: Learning about palliative care for all

Rod MacLeod MNZM is Senior Staff Specialist and Director of the HammondCare Learning & Research Centre, Greenwich Hospital and Conjoint Professor in Palliative Care at the University of Sydney Northern Clinical School, Australia. In this background post to his longer article in the June issue of the European Journal of Palliative Care, Prof MacLeod explains how their website contributes to a ‘state-wide’ education programme that aims to enable people to die at home.

Prof Rod MacLeod

Prof Rod MacLeod

How do people learn about palliative care? Unless they go on a specialist training programme it is likely that they listen to lectures, read journals and other media or pick it up from specialist colleagues.

One of the things that occurred to me back in 1988 when I was first learning about palliative care was that, unless we could find effective methods of providing general practitioners and other members of the primary healthcare team with education about what matters most in palliative care, we would not be able to make progress. Over the years, many have tried with varying success to make a difference through education.

In late 2013, the New South Wales state government in Australia allocated $35 million to four palliative care providers, to enable people to die at home. One of these, HammondCare, formed a consortium with palliative care providers Sacred Heart Health Service and Calvary Health Care Sydney Ltd, in collaboration with local health districts and specialist palliative care services, to provide a programme to enable this. Part of that project involved creating a ‘state-wide’ education programme. We saw this as an opportunity to develop an innovative way to provide information to healthcare professionals and the community. Rather than trying to reach every area of the state (which covers over 800,000 km2) to deliver seminars and lectures we opted to create a website www.palliativecarebridge.com.au that would have a broad reach and cover as many topics as we could think of concerning care near the end of life that people could use when and where they liked.

Screen Shot 2016-05-22 at 23.01.44What you can find on our website

The Palliative Care Bridge delivers over 60 short educational videos and other resources on palliative care by respected experts in their fields. Our aim is to better equip users of the site to gain confidence and specialised knowledge in the delivery of appropriate palliative care to people in need. We aimed to cover all the usual topics but rather than providing the classical hour-long talk we aimed to provide ten to fifteen minutes of ‘tips and tricks’ on many topics that would help people in their provision of care. The website also includes printable resources including assessment tools, a booklet on pain management, resources for conveying information to Aboriginal people about life-limiting illness and a directory of bereavement services and counselling. The presentations aren’t just by health professionals either. We have interviews with patients and carers of people who are dying.

The reach of the website has been worldwide. The main users are in Australia and New Zealand but we have had visitors from many parts of the world. Please visit it. We welcome feedback from anyone with comments, criticisms and suggestions for improvements and additions.

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, The Palliative Care Bridge, an online training resource for palliative care staff by Rod MacLeod, published in the May/June 2016 edition of the European Journal of Palliative Care (vol. 23.3).

Look out for the new edition of the journal to be published later this week.

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.

Links

 

Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care | Tagged | Leave a comment

Integrated palliative care: The experience of working in the InSup-C European project


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InSup-C is a cooperative research project funded by the European Commission Framework 7 Programme studying integrated palliative care models across Europe. The study, led by Jeroen Hasselaar, from Radboud University, Nijmegen (The Netherlands), finishes at the end of 2016.

Carlos Centeno and Eduardo Garralda, of the University of Navarra (Spain), have participated jointly with ten other European research groups. Here they reflect on the experience of working on this project.  

 

What did it feel like to be part of a European project, such as InSup-C?

Eduardo Garrulad

Eduardo Garralda

Eduardo (research collaborator, University of Navarra): 

These years in InSup-C have been truly enriching both at a professional and a personal level. We have worked together with many researchers from different backgrounds and countries, where everyone has contributed their experiences. Even if you have relatively little international experience you can still be hugely useful. If you are offered a place in a European project you will be working with the best and can contribute your knowledge and expertise to the team.

Carlos Centeno

Carlos Centeno

Carlos (main investigator, University of Navarra):

For ATLANTES, a research programme of the University of Navarra, the experience of this European project has been lived with enthusiasm and excitement. 

You could see that with InSup-C, relevant questions for Europe as a whole were answered. Our team could contribute its experience to the evaluation of international palliative care development, but as part of InSup-C we dared to do more: we tried to respond to the key issue of integrating palliative care into health systems. A project like this is important for the future and pushes you forward to make international alliances and to ask yourself more daring research questions. For instance, we are now considering how to initiate palliative care development where no services currently exist, or how to set up national programmes in any continent where palliative care is in the very early stages. 

Members of the InSup-C consortium from Belgium, Germany, Hungary, Ireland, Netherlands, Spain and the UK. (Image courtesy of Anthony Greenwood)

Members of the InSup-C consortium from Belgium, Germany, Hungary, Ireland, Netherlands, Spain and the UK. (Image courtesy of Anthony Greenwood)

What has InSup-C achieved so far?

Carlos and Eduardo: 

The team has already published a number of papers, including:

Van Beek K, Siouta N, Preston N, et al. To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review.BMC Palliat Care. 2016; 15: 26.

Siouta N, Van Beek K, Preston N, et al. Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways. BMC Palliat Care. 2016; 15:18.

Aldridge M, Hasselaar J, Garralda E, et al. Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliat Med. 2016; 30: 224-239.

Ewert B, Hodiamont F, van Wijngaarden J, et al. Building a taxonomy of integrated palliative care initiatives: results from a focus group. BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000841.

Garralda E, Hasselaar J, Carrasco JM et al. Integrated Palliative Care in the Spanish context: a systematic review of the literature. BMC Palliat Care. 2016; 15: 49 

What can we expect from you in the future?

Carlos and Eduardo: 

Within the coming months, the InSup-C team will be busy disseminating the project results. Keep an eye on our website and also the EAPC Blog for more contributions from other members of the team.

Find out more . . .

You can read more posts from members of the InSup-C Project on the EAPC Blog.

 

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La integración de cuidados paliativos: la experiencia de trabajar en el proyecto europeo InSup-C 

InSup-C es un proyecto de investigación cooperativo financiado por el Séptimo Programa Marco de la Unión Europea que estudia modelos de cuidados paliativos integrados en Europa. El estudio, liderado por Jeroen Hasselaar, de la Universidad Radboud, Nijmegen (Holanda), concluye a finales de 2016.

Carlos Centeno y Eduardo Garralda, de la Universidad de Navarra (España), han participado conjuntamente con otros diez grupos de investigación europeos. En esta entrada reflexionan sobre la experiencia de haber trabajado en este proyecto.

¿Qué se siente al haber sido parte de un proyecto europeo como el proyecto InSup-C?

Eduardo Garralda

Eduardo Garralda

Eduardo (colaborador de investigación, Universidad de Navarra):

Estos años en InSup-C han sido realmente enriquecedores tanto a nivel profesional como a nivel personal. Hemos trabajado en colaboración con muchos investigadores de distintas disciplinas y países, donde cada cuál aportaba su propia experiencia. Aún teniendo poca experiencia en investigación internacional, nos hemos sentido tremendamente útiles. Si te dejan un hueco en un proyecto europeo, puedes estar trabajando con los mejores y aportar tus conocimientos y habilidades al equipo.

Carlos Centeno

Carlos Centeno

Carlos (investigador principal, Universidad de Navarra):

Para ATLANTES, un programa de investigación de la Universidad de Navarra, la experiencia de este proyecto europeo se ha vivido con entusiasmo e ilusión. 

Podías ver que con InSup-C, se respondían cuestiones relevantes para toda Europa. Nuestro equipo podía aportar inicialmente su experiencia en la evaluación del desarrollo internacional de los cuidados paliativos, pero como parte de InSup-C, aún nos hemos atrevido a más: hemos tratado de responder a la pregunta clave de la integración de los cuidados paliativos en los sistemas de salud. Un proyecto como éste es importante para el futuro, y nos empuja a establecer alianzas internacionales y preguntarnos cuestiones más ambiciosas. Por ejemplo, ahora estamos estudiando como iniciar el desarrollo de los cuidados paliativos allí donde no existen servicios, o cómo establecer programas nacionales en cualquier región o continente donde los cuidados paliativos se encuentre en fases iniciales. 

Miembros del Consorcio InSup-C de Bélgica, Alemania, Hungría, Irlanda, Holanda, España y Reino Unido (Imagen cortesía de Anthony Greenwood)

Miembros del Consorcio InSup-C de Bélgica, Alemania, Hungría, Irlanda, Holanda, España y Reino Unido (Imagen cortesía de Anthony Greenwood)

¿Qué ha logrado InSup-C hasta el momento?

Carlos y Eduardo:

El equipo ha publicado ya una serie de artículos entre los que se incluyen los siguientes:

Van Beek K, Siouta N, Preston N, et al. To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review.BMC Palliat Care. 2016; 15: 26.

Siouta N, Van Beek K, Preston N, et al. Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways. BMC Palliat Care. 2016; 15:18.

Aldridge M, Hasselaar J, Garralda E, et al. Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliat Med. 2016; 30: 224-239.

Ewert B, Hodiamont F, van Wijngaarden J, et al. Building a taxonomy of integrated palliative care initiatives: results from a focus group. BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000841.

Garralda E, Hasselaar J, Carrasco JM et al. Integrated Palliative Care in the Spanish context: a systematic review of the literature. BMC Palliat Care. 2016; 15: 49 

¿Qué se puede esperar de vosotros en el futuro?

Carlos y Eduardo:

En estos próximos meses, el equipo InSup-C estará centrado en la difusión de los resultados de la investigación. Podéis seguir estas actividades y ver los resultados en nuestra página web y en el blog de la EAPC para conocer las contribuciones de otros miembros del equipo.

Para saber más . . .

Podéis leer más entradas de otros miembros del proyecto InSup-C en el blog de la EAPC.

 

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Palliative Care in North Africa and the Middle East: Jordan perspectives

In October 2015, the World Health Organization Eastern Mediterranean Region (WHO EMRO) organized the third ‘Train the Trainers’ workshop about palliative care. As a special adviser to the WHO EMRO, Professor Sheila Payne met leaders in palliative care from the region and invited them to contribute to this special series on palliative care in North Africa and the Middle East.

Participants at the WHO EMRO meeting in Kuwait, October 2015

Participants at the WHO EMRO ‘Train the Trainers’ workshop in Kuwait, October 2015

Omar Shamieh, MD, MBA, Consultant, Hospice & Palliative Medicine, Chairman of Palliative & Home Care Services at King Hussein Cancer Center, and Chairman of the Jordan National Palliative Care Committee, Ministry of Health, Jordan, concludes the series.

Dr Omar Shamieh, MD, MBA

Dr Omar Shamieh, MD, MBA

A question we are often asked is about the applicability of hospice and palliative care principles in Jordan and barriers to implementation. From the perspective of a palliative care physician trained in North America I have found no major difference in practising and applying palliative care principles in Jordan. Jordanians may have different cultural values and preferences; however, they are no different from any other population in their reaction to terminal illness and their experience of suffering. Patients are in need of effective communication skills, effective symptom and pain management and effective end-of-life care.

Jordan is a Middle Eastern Country with a population of 9.5 million in 2015. The predominant religion is Islam, Muslims make up 97.2 % of the population and 2.2 % are Christians. The country is classified as upper-middle income and the predominant language is Arabic. Health care in Jordan is considered one of the best in the region; in 2014 the estimated annual cancer burden was 6,000 new cases and around 50% present in the advanced stages. Hospice and palliative care started in Jordan in the early 1990s with a stand-alone, not-for-profit home hospice, named Al-Malath. In 2001, the Jordan Palliative Care Initiative emerged, and a National Palliative Care Committee was created under the Ministry of Health to oversee the development of palliative care in the country. The National Palliative Care Initiative and the National Palliative Care Committee are led by King Hussein Cancer Center (KHCC) in collaboration with the Ministry of Health, the World Health Organization and key stakeholders from governmental and non-governmental organisations. The main objectives are to increase opioid availability and access, build capacity of palliative care by increasing educational and training opportunities and encourage healthcare services to incorporate palliative care.

Palliative care interdisciplinary teams at KHCC

Palliative care interdisciplinary teams at King Hussein Cancer Center

Currently, King Hussein Cancer Center is leading the largest comprehensive hospice, palliative, and home care services and serving more than 50% of cancer cases in the country. KHCC palliative care team treated more than 10,000 patients in the past decade and trained more than 2,000 healthcare professionals. In addition, palliative care services are currently starting in other large government and private hospitals. Educational opportunities have increased from basic and advanced courses to the availability of various palliative care diplomas, a palliative care master’s degree, and palliative care fellowships. Palliative care education is being incorporated into the curricula of major medical and nursing schools. Palliative care is incorporated in the Jordanian National Cancer Control plan. A new national home care initiative is emerging to build capacity and improve access to home care and promote palliative community services. The national strategic goal is to make palliative care affordable and accessible to all Jordanians.

There are remaining challenges to overcome, including the accreditation of a palliative care fellowship by the Jordan Medical Council, the formation of the Jordanian palliative care board certification to increase specialty recognition and improvements to provider reimbursement. Further challenges are to increase opioid availability and access in the peripheral governorates of Jordan, to increase the number of palliative care services in all healthcare settings and to create a hospice and home care national insurance plan to improve access and make these service affordable to all.

All Jordanians deserve to receive the best health care possible when they are suffering from a terminal illness. They deserve optimal treatment for their pain and other symptoms regardless of their age, sex, religion, or where they reside.

References

  1. A Comprehensive Palliative Care Program at a Tertiary Cancer Center in Jordan, American Journal of Hospice & Palliative Medicine, 2015, Vol. 32 (2) 238-242.
  2. Innovation Can Improve and Expand Aspects of End-of-Life Care in Low and Middle-Income Countries Health Affairs 33, 9 (2014): 1612-1619.
  3. Omran S, Obeidat R, Palliative Care Nursing in Jordan. J Palliat Care Med 2015, S4: 1.

Read more about Palliative Care in North Africa and the Middle East on the EAPC Blog . . .
If you missed any of the previously published posts in this series you can read contributions from Djibouti, Egypt, Sudan and Saudia Arabia.

With special thanks to all the contributors to this series and Prof. Sheila Payne.

Posted in Middle East & North Africa, NATIONAL & INTERNATIONAL REPORTS | Tagged | Leave a comment

Can saving money be unethical? What we know empirically and should know ethically about the cost-implications of Advance Care Planning

Georg Marckmann and Corinna Klingler, Institute for Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich; Jürgen in der Schmitten, Institute for General Practice, Heinrich-Heine University of Düsseldorf, Germany, explain the background to their longer article selected as Editor’s Choice in the May edition of Palliative Medicine.

Jürgen in der Schmitten, Corinna Klingler and Georg Markmann

Jürgen in der Schmitten, Corinna Klingler and Georg Markmann

There is increasing empirical evidence that Advance Care Planning (ACP) is indeed able to reach its primary goal: strengthen patient autonomy and improve quality of care near the end of life. Given the steeply rising costs for life-sustaining treatment before death, it is somewhat surprising that there is only little debate and scattered empirical evidence about the effects of comprehensive ACP-programmes on the costs of care. We therefore conducted a systematic review of the cost implications of facilitated Advance Care Planning, which has just been published in Palliative Medicine. So for this review, we understood ACP in its historical, proper sense (defined by a qualified conversational process between a facilitator and the individual). We consequently ignored conventional advance directives (ADs) that may or may not be based on such a process, even though nowadays some authors call anything that leads to an AD, Advance Care Planning.

Our systematic search in five relevant data bases confirmed our initial impression: There is only limited, heterogeneous and methodologically not very rigorous evidence on the cost implications of ACP comprising at least one professionally facilitated conversation about future care. However, six out of the seven studies that were included in this review demonstrated cost savings through ACP. If mentioned, programme costs were comparatively small amounting to less than 15% of the overall savings. However, no study accomplished a comprehensive approach covering all direct and indirect costs of the intervention.

This – preliminary – evidence makes ACP an attractive tool for funders and policymakers: Where else in our technologically driven healthcare systems is it possible to improve quality of care and reduce costs substantially at the same time? What appears to be an ethical no-brainer at first glance turns out to be more delicate at a closer look: ACP programmes only reduce costs if patients opt for limiting life-sustaining treatment. Under the current economic pressure in most healthcare systems, ACP facilitators could be incentivised to advise individuals to choose less invasive and therefore less costly treatment in their ADs.

These conflicts of interest could jeopardise the openness of the communication process – one, if not the, central feature of ACP! – and may erode patient trust in ACP. This is not a hypothetical fear: Sarah Palin’s “death panel” rhetoric was successful in creating sufficient political pressure in the US to turn down the Medicare reimbursement for ‘Advance Care Planning Consultations’ in the Affordable Health Care Choices Act in 2009.

We conclude: ACP must remain an intervention aiming exclusively at ensuring that patients’ wishes are honoured reliably when they have lost decision-making capacity. It is good to know that the considerable investment necessary for a regional implementation of ACP, especially in the early years, is likely to be offset by financial gains, at least in the long run. However, it would be naïve not to take into account that cost containment is an important driver for funders and policymakers. In our paper, we therefore propose several safeguards to ensure the openness of ACP – above all, clearly defined and supervised quality standards for the facilitation process.

palliative med coverRead the full article in Palliative Medicine
This blog post relates to the longer article, ‘Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical consideration’ by Corinna Klingler, Jürgen in der Schmitten and Georg Marckmann, Palliat Medicine May 2016 vol. 30 (5) 423-433. Published online before print August 20, 2015, doi: 10.1177/0269216315601346.

Download your free copy of this month’s Editor’s Choice article from the EAPC website

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

 

WRC2016_banner265x80Welcome to Dublin – 9th EAPC World Research Congress, Dublin, Ireland 9-11 June 2016. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl

Willkommen in Dublin – 9th EAPC World Research Congress, Dublin, Irland 9-11 Juni 2016. Folgt uns auf  Twitter @EAPCOnlus – Unser offizieller Kongress Hashtag ist #eapc2016irl  

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged , | Leave a comment

The ‘Do nothing option’ cannot be an option: Portugal’s increasing trend of hospital deaths goes against peoples’ preferences

Dr Vera Sarmento, Internal Medicine trainee in Hospital do Espirito Santo de Evora, EPE, Medicina 2, Portugal, explains the background to a longer article published in the April edition of Palliative Medicine

Dr Vera Sarmento

Dr Vera Sarmento

Portugal is a country with an extremely ageing population, and limited access to palliative care, with service numbers well below the recommended thresholds in the EAPC White Paper on standards and norms for hospice and palliative care in Europe. Hence, we experience the impact of this lack of expertise on an everyday basis, not only as health professionals but also as family members and friends.

Hospital death is a reality for the majority, not because this is where the patient prefers to die, but because it is what is possible, and/or what is known. The ethos of the Portuguese SNS is focused on cure, on ‘saving lives’, and those who are not deemed to be cured are too often put aside with the famous words: ‘There is nothing we can do for this patient.’

Wrong! There is so much that can be done to improve the lives of these patients and their families.

Well aware of the need to know more about the reality of the population with palliative care needs in Portugal, in 2012 I started to work in the DINAMO Project team at King’s College London, Cicely Saunders Institute, where I also completed the MSc programme. DINAMO is a five-year research project funded by the Calouste Gulbenkian Foundation, aimed at enhancing advanced training and research to optimise home palliative care in Portugal.

We started by studying how the preferences of the Portuguese population (elicited in a seven EU-country survey conducted in the context of the PRISMA Project) compared to the reality of place of death in this country. We found a huge gap between preferences and reality for place of death. While only 9% of the people surveyed chose to die in hospital, 62% of the population did die in hospitals in 2010 (findings published in the Portuguese Medical Journal).

So, the next question was: how did the proportion of hospital deaths evolve over time? And, if circumstances remained the same in the Portuguese context (i.e. if nothing is done to reduce the high proportion of people who die in hospital), how would hospital deaths numbers and proportions change in the future? Answering these important questions involved negotiating access to the Portuguese mortality database. Accessing this database, not only allowed us to study past and future hospital deaths but also to answer further questions in other DINAMO studies (read more on our webpage). More recently, the data were used in the Portuguese Palliative Care Observatory application, showing regional profiles of palliative care need in Portugal.

When looking at past trends of hospital deaths in Portugal, we found that hospital deaths increased steadily from 45% in 1988 to 62% in 2010. The projected hospital deaths, according to three different models, show a further increase in hospital deaths, by at least a quarter until 2030. Conditions remaining the same, at least 75% of all deaths will take place in hospital by 2030, representing 23,000 more deaths in hospital per year compared to 2010. The findings were published last month in Palliative Medicine.

Similar studies have influenced national programmes for the development of palliative care services (e.g. in the UK, Belgium, Canada) leading to changes in place of death trends based on population preferences. We therefore call for a national strategy in Portugal to develop integrated specialist home palliative care teams, in order to support people’s preferences and enable more to achieve a good death at home, with the best possible outcomes for patients and families.

4.coverDownload the full article in Palliative Medicine
This post relates to a longer paper, ‘Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world’, by Sarmento VP, Higginson IJ, Ferreira PL, Gomes B., published in Palliative Medicine, 2016, Vol. 30 (4) 363-373. DOI: 10.1177/0269216315594974.You can download the paper here.

 

Acknowledgements
I am grateful to the following organisations whose support enabled this project:
Calouste Gulbenkian Foundation; colleagues in the DINAMO Project (Principal Investigator: Bárbara Gomes, Senior Researcher: Irene Higginson); the Portuguese Statistics Office; the EUROSTAT; the Office of Statistics and Education Planning of the Portuguese Ministry of Sciences, Technology and Higher Education; the Cicely Saunders International.

Posted in EAPC-LINKED JOURNALS, NATIONAL & INTERNATIONAL REPORTS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged | Leave a comment

Palliative Care in North Africa and the Middle East: The story of Samira from Djibouti


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In October 2015, the World Health Organization Eastern Mediterranean Region (WHO EMRO) organised the third ‘Train the Trainers’ workshop about palliative care. As a special adviser to the WHO EMRO, Prof Sheila Payne met leaders in palliative care from the region and invited them to contribute to this special series on palliative care in North Africa and the Middle East.

Dr Fosia Yacin, Medical Consultant (HIV/AIDS) and Head of Infectious and Tropical Diseases Unit, Hôpital Général Peltier, Republic of Djibouti in North East Africa, continues the series.

I deliver palliative care in an infectious disease unit, at SMIT (the hospital for infectious and tropical diseases in the capital city of Djibouti), not in a hospice. Most inpatients are HIV positive. Most of them are also affected by opportunistic diseases such as tuberculosis, herpes, bronchopneumonia and diarrhea, which progress on already malnourished or under- nourished patients. Patients who are HIV positive receive free care but may be asked to honour prescription charges when medicines, such as antibiotics, are in short supply.

Dr Fosia Yacin

Dr Fosia Yacin

I would like to share an experience that describes the extraordinary capacity of a human being who is faced with a disease that has a poor prognosis. You see, it’s not the fear of death itself that the patient experiences but it’s a constant fear. A ‘stew’ of fear and loneliness of facing up to the inevitable: the final departure.

Her name was Samira: she was in the terminal phase of HIV and for the third time she had tuberculosis of the spine. Admitted late because there was no family to care for her, she found a new family in the hospital staff.

There are no established procedures for the care and support of patients who are at the end of life in Djibouti and the staff are not trained in palliative care or psychological and social support. Our care is therefore simple – it’s about respecting human life and ensuring the maximum dignity of the patient. Clothing, toiletries, food, nursing and medical care are provided with the help of family members. (The hospital covers nursing care and injectable medicines but families provide clothing, toiletries and food). They are invited to care for their sick family member on the ward and we exchange information about the progress of the patient’s illness, both psychological and physical aspects. We are duty bound to tell the truth to the patient or his family members about a poor prognosis, and to give them information about the diagnosis and prognosis. We use short sentences – if too long they will get confused and you have to remember that the vast majority of patients are illiterate.

Samira knew she was getting weaker, a lot weaker, and that she had very little chance of recovering from her illness. To ease her psychological pain there were daily discussions with psychosocial workers, the psychologist and the doctors.

When you’re faced with death, you still have to live: for that you need to create another reality than that experienced by patients, and become aware of other ‘living people’. As caregivers, we can’t feel the pain or the joy that is outside of our experience; faced by someone who is in poverty, alone, malnourished and bedridden we strive to share moments of religious and cultural festivities.

Samira died quietly one day, surrounded by the family she had known in her final place of care.

Disease may be controlled effectively in centres that are specially equipped and adapted, but delivering care with compassion, love and verbal support does not require specialized equipment. We must strive to support a patient at the end of life, as well as family members, and to help them to accept the inevitable end and to cope with the constant difficulties related to psychological and physical suffering. Family members who wish to remain close to their loved one have easy access to the ward and can even sleep with them. Currently, we do not have a home care service because of lack of resources and staff.

During my nine years’ experience as a medical consultant, it has become clear to me that we should not fear the inevitable and that we should bear in mind that the best ending is one where you are not alone and are cherished and loved.

This article is dedicated to Samira and to so many others.

Note: For reasons of patient confidentiality, the patient’s name has been changed.

Read more posts in this series

Click here to read previous posts in this series: Dr Nahla Gafer on Sudan Dr Samy Alsirafy on Egypt, Dr Sami Ayed Alshammary on Saudi Arabia. Next week, Dr Omar Shamieh will conclude the series with a post on palliative care perspectives from Jordan

 

Les soins palliatifs en Afrique du Nord et au Moyen-Orient : L’histoire de Samira de Djibouti

En Octobre 2015, l’Organisation Mondiale de la Sante dans la Région de la Méditerranée orientale (EMRO OMS) a organisé le troisième atelier pour ‘Former les formateurs’ concernant les soins palliatifs. En tant que conseiller spécial du EMRO OMS , le Professeur Sheila Payne a rencontré les leaders en soins palliatifs de la région et les a invités à contribuer à cette série spéciale sur les soins palliatifs en Afrique du Nord et au Moyen-Orient.

Aujourd’hui, nous reprenons cette série avec un article par Dr Fosia Yacin, Médecin référent VIH/SIDA, Chef de service, Maladies infectieuses et tropicales, Hôpital général Peltier, Djibouti.

Cet article concerne les soins palliatifs en service des maladies infectieuses et tropicales (SMIT) à l’hôpital général Peltier de Djibouti. Ceci n’est pas un centre de soins palliatifs mais un service de maladies infectieuses situé dans la capitale de Djibouti. La plupart des patients hospitalisés est séropositive au virus de l’immunodéficience humaine. Ils sont atteints en grande majorité de maladies opportunistes telles que la tuberculose pulmonaire, l’herpès, les bronchopneumonies et les diarrhées évoluant sur un lit de malnutrition et de dénutrition. Les soins au SMIT ne sont pas gratuits ainsi que l’hospitalisation. Mais tous les frais sont gratuits pour les patients séropositifs. Il nous arrive de nous retrouver en rupture de stock de certains antibiotiques ou autres, pour compléter la prise en charge nous demandons à ce que les patients honorent les ordonnances médicales et ainsi ne pas désavantager le patient séropositif.

Dr Fosia Yacin

Dr Fosia Yacin

Je souhaiterais partager une expérience qui décrit la nature humaine et les capacités extraordinaires dont elle fait preuve face à une maladie avec un pronostic vital défavorable.

Voyez-vous ce n’est pas la mort en tant que telle qui éprouve le patient mais c’est une crainte permanente. Une « bouillabaisse » de peur et de solitude face à l’inéluctable : le départ final !

Elle se prénommait Samira, séropositive en stade terminale atteinte pour la troisième fois d’une tuberculose de la colonne vertébrale. Admise tardivement par manque de famille qui puisse prendre soin d’elle. Elle a retrouvé une nouvelle famille au sein du personnel hospitalier.

Il n’existe pas de procédures préétablies de prise en charge et d’accompagnement des patients en fin de vie dans notre pays. Et évidemment ces mesures n’existent pas au SMIT et le personnel n’est pas formé en matière de soins palliatifs et d’accompagnement psychologique et social.

De ce fait, notre optique est simple et se résume à respecter la vie humaine en assurant le maximum de dignité au patient. Habillement, toilette, alimentation, nursing et soins médicaux sont prodigués avec l’aide des membres de la famille. (La famille se charge de l’alimentation, de la toilette, ainsi que l’habillement de leur parent ; l’hôpital prend en charge les soins de nursing et médication injectable).

Ces derniers sont invités à s’occuper des malades au sein du service et nous échangeons les informations relatives à l’évolution de l’état de santé du malade tant sur le plan moral que physique. Nous nous devons de dire la vérité soit au malade soit à ses membres proches sur un pronostic sombre en apportant des phrases courtes – longues elles les embrouilleraient tout en gardant à l’esprit que pour la grande majorité il s’agit de patients analphabètes – et éclairées sur leur diagnostic et le pronostic.

Samira se savait affaiblie, très affaiblie et ayant très peu de chance de pouvoir se relever de sa maladie. Atténuer sa douleur morale passait par des discussions journalières avec les assistants psychosociaux, avec le psychologue et les médecins.

Face à la mort, il faut aussi vivre et pour cela créer une réalité autre que celle vécue par ces patients, et ainsi se mettre au diapason avec les autres « vivants ». En tant que personnel soignant, nous ne pouvons ressentir la douleur, la joie, qui nous est extérieure pourtant, face à une personne démunie, seule, malnutrie et immobile dans son lit nous nous efforçons de partager des moments de festivités (culturelles et religieuses).

Samira est partie un jour sans effusion de cris des suites de sa maladie entourée de sa famille, celle qu’elle a connu en dernier lieu.

Lutter contre la maladie de manière efficace passe par des centres équipés et adaptés mais la compassion, l’amour et le soutien verbal concernent tout un chacun et ne demandent pas d’équipements spécialisés.

Nous devons nous efforcer d’accompagner un patient en fin de vie mais aussi les membres de sa famille, les amener à accepter la fin inéluctable et à supporter les difficultés permanentes liées à la souffrance morale et physique. Les membres de la famille qui souhaitent rester auprès de leur proche ont un accès facilité au service et peuvent ainsi même dormir avec eux. Pour l’instant nous ne disposons pas d’un accompagnement à domicile par manque de moyens et d’effectifs du personnel soignant.

Au cours de mes neuf ans d’expérience en tant que médecin référent, l’on se rend à l’évidence que l’inéluctable ne doit pas nous faire peur et qu’il faut garder à l’esprit que le meilleur départ est celui ou on est entouré, choyé et aimé.

Pour Samira et tant d’autres . . .

A noté : Pour des raisons de confidentialité, le prénom de la patiente a été modifié.

Pour en savoir plus sur le Blog EAPC . . .
Vous pouvez lire d’autres articles dans cette série offerte par des professionnels de la santé de Soudan, d’Egypte et d’Arabie Saoudite

La semaine prochaine nous vous apporterons l’article final dans cette série écrit par le Dr Dr Omar Shamieh concernant les soins palliatifs en Jordanie.

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EAPC Board Matters: Board members of the European Association for Palliative Care meet in Bucharest

Dr David Oliver, EAPC Board Member and Honorary Professor, University of Kent, UK, describes key activities that were discussed at the latest Board Meeting held in Bucharest on 29-31 March 2016.

 

Dr David Oliver

Dr David Oliver

The EAPC Board meeting covered a number of important topics:

New office

The EAPC Board agreed to open a new branch office in Brussels in addition to the EAPC head office in Milan. Several advantages support this decision, such as the proximity to European Union (EU) commissioners and other health-related civil society organisations. The board also considered that having the new office would better facilitate the EAPC’s influence on EU policies, and increase cooperation between the EAPC and other non-governmental organisations based in Brussels.

Reference Groups

It was agreed to develop Reference Groups to allow continued and collaborative work within the EAPC. Task Forces will still be established for specific task orientated projects, such as the development of a White Paper, but Reference Groups will allow longer-term activities and collaboration with other European groups to be developed. There will be a similar process to the establishment of Task Forces, with an application procedure, clear leadership and a link to the EAPC Board.

European Union funded research

The EAPC is actively involved in two large EU-funded research projects as a dissemination partner. The PACE project is looking at the provision of care in long-term care facilities in several countries across Europe. The InSup-C project focuses on Integrated Palliative Care. More details on both projects can be found on their respective websites: PACE and InSup-C.

Congresses

The 9th World Research Congress of the EAPC will be held in Dublin, Ireland from 9-11 June 2016. You can still register to attend on the congress website.

The 15th World Congress of the EAPC will be held in Madrid, Spain from 18-20 May 2017 – further details are available on the congress website.

The 10th EAPC World Research Congress will be in Bern, Switzerland in 2018 and the 16th World Congress is planned for Paris in June 2019 – more dates for your diaries!

UNGASS on Drugs

The EAPC has been closely involved in the European Union’s contribution to the United Nations General Assembly Special Session on Drugs (UNGASS), which took place in April 2016. Although the main aim of the meeting was to look at the control and treatment of drug problems, the need for opioids to be made easily available for pain and symptom management has been reinforced in the discussions and documents.

The EAPC Research Network

The Network is very active in encouraging and supporting research across Europe. It is planning the Research Congresses and is involved in several large projects including:

  • CanCon – Cancer Control Joint Action – an EU project with 27 partners across Europe looking at improving cancer care, including palliative care
  • Studies on cancer cachexia and radiotherapy treatment in bone metastases
  • Reassessment of the World Health Organization (WHO) Three Step approach in cancer pain control – looking at the second step in a large study of 200 patients at 17 sites in five countries.
Bucharest was the city chosen for the spring meeting of the EAPC Board of Directors

Bucharest was the city chosen for the spring meeting of the EAPC Board of Directors

Journals

Presentations were heard from the two official journals of the EAPC:

Palliative Medicine has an increased Impact Factor of 2.855 and is now ranked at 18 out of the 88 Health Care sciences and Services journals. Palliative Medicine appears in the top 25% for all journal categories, and is the highest rated of the palliative care journals.

The European Journal of Palliative Care has increased its institutional subscriptions. A new website is due shortly, and in the first three months of 2016 there were 2,750 visitors to the site, with 6,000 page views. The journal plans to introduce a reader survey in the coming months and encourages all EAPC members to complete this.

The Board welcomes comments and suggestion 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 the opportunity to become more involved! – take it now and use the Online Blog, Twitter, Facebook and LinkedIn to contact us.

Anyone is welcome to contact the President, Professor Phil Larkin, or the Chief Executive Officer, Julie Ling, at Julie.ling@eapcnet.eu

Join the EAPC palliative care social media community

 

Posted in EAPC ACTIVITIES, EAPC Board Members | Tagged | Leave a comment