Rebel Rebel – how David Bowie shone a spotlight on palliative and end-of-life care

New series: The Arts in Palliative Care, looks at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Rebecca Patterson, Director of Good Life, Good Death, Good Grief, Scotland, UK, looks at how palliative care has become part of the world’s largest arts festival.

Rebecca Patterson

The Edinburgh Festival Fringe is home to cutting-edge arts and comedy events that challenge existing ideas and tackle subjects not often dealt with elsewhere. Where better for a palliative care consultant to relax, open a bottle of wine, and explore the connections between culture, humour, palliative care and David Bowie?

In a lamp-lit room in the Quaker Meeting House overlooking the rooftops and cobbles of the City of Edinburgh, Cardiff-based palliative care consultant, Mark Taubert, was interviewed by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care. In front of an appreciative audience, the two Marks discussed Dr Taubert’s experiences of working in palliative care, the impact of David Bowie’s death, and an unwanted visit from the Daily Mail.

Mark Hazelwood interviewing Mark Taubert (right).

This unique event was held as part of Death on the Fringe, a hand-picked series of shows that look at death and dying from different perspectives – some serious, some comical – but all contributing to the debate on death and end-of-life matters. Every Death on the Fringe performance has its own unique take on the subject. Organised by the Scottish Partnership for Palliative Care, the aim of the project is to encourage Fringe audiences not to steer clear of this tricky subject matter and to point them towards some brilliant, entertaining and important events.

From a street mural of David Bowie

In his event, ‘Rebel Rebel – how Bowie shone a spotlight on palliative and end-of-life care’, Mark Taubert told the story of his conversation with a patient the day after David Bowie’s death. Somehow, connecting with each other over their shared loss eased what can so often be uncomfortable – an open and honest conversation about declining health, death, and preferences for care.

This conversation, and the music video of the song ‘Lazarus’, prompted Taubert to write a posthumous letter to David Bowie. A letter that was later the subject of the sole tweet sent by Bowie’s son in the weeks following his death. A letter that went viral over social and print media. A letter that has inspired a musical composition premiered on BBC Radio 3. A letter that has been read out aloud by Jarvis Cocker and Benedict Cumberbatch. Why so much fuss over a letter? Probably best to read it yourself here. 

It is clear that Taubert is a Bowie fan – Bowie provided a soundtrack to many of the significant events in his life. But for him, there’s more to it than that. Bowie was a rebel, and that is something Taubert can identify with.

Working in a society where death is seen as medical failure, do most palliative care specialists feel like rebels? Is it rebellious to think that there might come a time in someone’s life when they might choose to refuse intrusive medical interventions? Is it rebellious to think that medicine isn’t solely about prolonging life at all costs to a person’s comfort? Is it rebellious to suggest that there are some actions we can all take to prepare for our own death and, in doing so, make life easier for ourselves and those we care about?

This is a subject Taubert is passionate about, for example, he has been instrumental in creating videos and websites for the TalkCPR campaign in Wales, which encourages conversations around the topic of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR). Taubert also raises awareness through his work with Byw Nawr (Live Now), a Welsh initiative working to encourage planning ahead for the last years of life. Death on the Fringe itself is part of a similar Scottish initiative, Good Life, Good Death, Good Grief, which works to promote more openness about death, dying and bereavement.

Taubert pointed out that in death, as in life, David Bowie showed people an alternative path – a path where people can make choices about how they die. Perhaps there are few among us who can turn our death into a work of art as Bowie did. But there are choices we can all make to share our wishes about what we’d want when our health is in irreversible decline and we’re approaching the end of life.

Links

 

 

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Breaking Barriers: Towards a WHO policy for strengthening palliative care education for all healthcare professionals

Frank Elsner, Phil Larkin, Stefan Lorenzl and Piret Paal explain why it’s important that all EAPC members contribute to a new EAPC online survey to evaluate the core elements of palliative care and shape our teaching and learning strategies.

Left to right: Frank Elsner, Stefan Lorenzl, Piret Paal and Phil Larkin

The World Health Organization (WHO) has made a strong commitment to supporting and developing palliative care structures as an important component of integrated treatment for young and old throughout the life course (World Health Organization, 2014). To ensure optimal responses to palliative care needs, educating healthcare professionals and volunteers is of major importance (Elsner et al, 2016). There is some evidence that a lack of knowledge regarding palliative care among the healthcare workers limits access to palliative care services (Hawley, 2017). To break this barrier, the need for palliative care education has to be addressed at many levels simultaneously.

Understanding that palliative care is about providing the best possible health in any chronic or life-threatening condition is often misunderstood within the wider healthcare community. The possibility that palliative care could be provided parallel to curative therapies, or even integrated soon after diagnosing the life-threatening condition, is far from being a common understanding and practice. Hence, it is to be expected that many healthcare providers, due to the lack of education or personal barriers, perceive referring to palliative care as a medical failure. In such situations, only those with strong private support systems are able to take care of themselves to keep up the necessary resilience. Others, lacking self-care structures, sink deeper into tiredness, irritation, and withdrawal – all known barriers to providing good care.

To diminish the feeling of failure is to choose early palliative care over the “there is nothing we can do” approach. Here, it is important to understand that palliative care does not replace any other forms of care but complements and completes the ongoing approach to care. The strengths of palliative care lie in collaboration, networking, promoting an interdisciplinary approach, and being conscious of the need for self-care. For education, this means creating toolboxes and modules that support healthcare providers’ decision making, even in situations of limited resources.

To improve postgraduate palliative care education, the WHO European Region in collaboration with the newly proposed EAPC Reference Group on Palliative Care Education and Paracelcus Medical Private University (PMU) in Salzburg – a WHO Collaborating Centre – are working towards innovative solutions to cultivate and support interdisciplinary and intersectional collaboration across different healthcare sectors.

The collaboration between the PMU and the WHO started in 2016 to look at developing a structure for a pan-European curriculum to assist in the promotion and embedding of palliative care into healthcare professional curricula at undergraduate and graduate level. The collection and collation of diverse palliative care curricula has so far resulted in numerous educational and training programmes for specialist palliative care in nursing, medicine and paediatrics from across Europe. It should be noted that in many European countries, palliative care initiatives are just being launched, mainly as a result of the pioneering work of small voluntary working groups, without any governmental funding or recognition. For this reason the current WHO collaboration addresses in particular healthcare professionals in the Eastern European region and Central Asia. Together, we look for opportunities to support their efforts towards providing better health to their patients.

There is an agreement between WHO and PMU to provide an online learning environment for strengthening palliative care education of all healthcare professionals by 2020. The goal is to break down the myths about palliative care and support healthcare professionals’ collaborations across all fields of responsibility.

Please contribute to the EAPC online survey 

The proposed EAPC Reference Group on Palliative Care Education, which will be under the direction of Prof Frank Elsner, has agreed that the core curriculum will be built along the ten competencies proposed by Claudia Gamondi, Philip Larkin and Sheila Payne in their White Paper (Gamondi et al, 2013). For this reason, an online survey has been launched to evaluate the core elements of palliative care.

We ask all EAPC members to contribute to this survey. In addition to evaluating the listed competencies, we are very interested in learning about your individual learning and teaching experiences. Can you share your most valuable lesson in palliative care or give good teaching examples? Irrespective of your level of experience or involvement in teaching or practising palliative care, your expertise will be much appreciated. We hope this survey will enable you to express what, in your opinion, lies at the heart of palliative care – that all healthcare professionals should be aware of and should form the basis of our teaching and learning strategies.

If you don’t have time to complete the survey but would like to share a story about palliative care education experiences, add your topic and email address and we will contact you.

We look forward to hearing from you and thank you for supporting this important European project.

Links

More about the authors . . .
Prof. Dr. Frank Elsner, Associate Professor for Palliative Medicine at the RWTH Aachen University in Aachen will chair the newly proposed EAPC Reference Group on Palliative Care Education.
Prof. Dr. Phil Larkin, President, EAPC, Professor of Clinical Nursing (Palliative Care), University College Dublin and Our Lady’s Hospice and Care Services, Dublin, Visiting Professor, Paracelsus Medical University in Salzburg.
Prof. Dr. Stefan Lorenzl, Professor of Neurology (LMU) and Professor for Palliative Medicine at the Paracelsus Medical University Salzburg.
Dr. Piret Paal, Coordinator of the EAPC Spiritual Care Reference Group (Education), EPICC Participant, Researcher and coordinator at the WHO Collaborating Centre for Nursing Research and Education at the Paracelsus Medical University in Salzburg, Austria.

References

Elsner, F; Centeno, C; Ellershaw, J. PallMed 2016. Early integration needs early education, Palliative Medicine 2016, Vol. 30(9) 805–6.

Gamondi, C. Larkin, P., Payne, S. (2013). Core competencies in palliative care: an EAPC White Paper on palliative care education – part 1. European Journal of Palliative Care, 20(2), 86-145.

Hawley, P. (2017). Barriers to Access to Palliative Care. Palliative Care, 10, 1178224216688887. doi:10.1177/1178224216688887

World Health Organization (2014). Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course. Journal of Pain & Palliative Care Pharmacotherapy, 28(2), 130-134. doi:10.3109/15360288.2014.911801.

Posted in EAPC Taskforces/special projects, EDUCATION & TRAINING | Tagged | 3 Comments

What future research is needed to improve care for people with advanced illness and towards the end of life?

Salzburg Public Debate on Palliative and End of Life Care . . .

On this, World Science Day for Peace and Development, the #allmylifeQs series launches its final, and perhaps most important, question: What future research is needed to improve care for people with advanced illness and towards the end of life?

Irene Higginson, Professor of Palliative Care & Policy and Director of the Cicely Saunders Institute, King’s College London, explains why research is so important, and what you can do to support it.

Professor Irene Higginson

Palliative care puts the person before the disease. (View our video here). Our role is to look after the whole person and those close to them, and this means assessing and offering the very best in therapies, treatment and care, to help people live well despite their illness as well as controlling symptoms at the end of life. The person-centred approach does not mean that we have it right yet; it should mean striving to improve what we do.

As a doctor trained dually in palliative medicine and public health medicine, I have long been concerned that the treatments, therapies and services that we can offer patients and families need to improve. In the future, I want to be providing patients and families with better treatments, therapies and care, especially in the hard to manage areas.

Research needs to test and discover better treatments for the many complex physical problems and symptoms that people have, such as breathlessness, fatigue, frailty, pain and nausea, as well as for emotional, social and spiritual issues. There is a need for research into better ways to support those who currently miss out on the best in palliative care, especially those groups that form part of growing populations (such as older people with multiple morbidity) who are most likely to require palliative care in the future. We also need to be realistic. Health and social care resources are constrained in many countries, so we need research into solutions that are cost-effective. Research into better services is also vital, as services are a key component to influencing quality of life for people.

Those close to the patient often provide so much, and research into ways to support them is urgently needed. We work closely with our Patient and Public Involvement (PPI) group, whose feedback and insights enable us to steer our research according to the needs and concerns of the people who will directly benefit from advances in palliative care practice and provision. Pam Smith, one of our PPI members, describes her reasons for becoming involved in the work of the Institute:

“Without ongoing research into palliative care, the lives of the people suffering from advanced illness, and also the lives of their carers, will never be improved. A compassionate society cares about the people who live in it!”

Scientific discovery takes time to progress. Palliative care has had some major successes over the years, but now we need to be thinking about what people will need in five to ten years’ time, and what research, investment, workforce and capacity are required to deliver this.

So with this #allmylifeQs, I am asking all of you who read this to speak to four other people today about why you think that research is important, and what you can do to support it.

Links and Resources

Coming up on the EAPC Blog . . .
To mark Human Rights Day on 10 December 2017, a final blog post will draw together the key issues of the nine questions discussed in this series.

Posted in ADVOCACY & POLICY, RESEARCH, Salzburg Global Seminar Series | Tagged , | Leave a comment

Room for some art? – Addressing the difficult topics of death, dying and resuscitation

In this new series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Today, Dr Mark Taubert, Clinical Director for Palliative Medicine Velindre NHS Trust, Bevan Commission Fellow and Clinical Lead at Byw Nawr, Wales, UK, describes an inspiring project with graphic design lecturers and students from Falmouth University.

Mark Taubert with Nicola Salkeld, a lecturer on the Moth project at Falmouth University, during discussions about the Talk CPR project with graphic design students.

How do we bring together the sometimes disparate topics of art and medicine? This formed part of the discussions at a recent national UK healthcare conference. In September 2017, a health and social care conference took place in Swansea, Wales, bringing together the Welsh National Health Service, academia and industry. This Bevan Commission annual conference event showcased the progress of Prudent Healthcare in Wales and provided a great opportunity to discuss how we can all promote and deliver these Welsh principles – in very different, creative ways – one of which I outline here.

I have been a member of the Welsh Bevan Commission for some years, initially on their Exemplar scheme and now as a fellow and adviser. During this time, I have tried to bring the difficulties my patients and their proxy face into sharper focus and to explore how they would address some of these difficult, even awkward conversations. The Bevan Commission, as well as the Welsh End of Life Care coalition, Byw Nawr, and Velindre NHS Trust have all facilitated this journey.

The Talk CPR project (see my earlier post on the EAPC Blog) has multiple facets, but one includes work with graphic design lecturers and students from Falmouth University. I met them in 2017 to discuss ways we could create visual and graphic stimuli to talk about future wishes surrounding death, dying and matters such as wishes about cardiopulmonary resuscitation. This resulted in the students creating some inspiring artwork that looked at it from a very different angle, compared to what we in mainstream healthcare tend to do. Below are just some of the images, and I will let them speak for themselves. You can see more of them on the website of the Moth Project at Falmouth University.

Theo Hallas: The Conversations Project

“My aim was to help those, whose loved ones are either terminally ill or reaching the end of their life. The posters are a prompt to encourage difficult conversations to happen before it is too late. To establish an understanding of the patient’s wishes and needs around issues such as Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), which can be discussed and understood more fully to ensure that death, can be as peaceful and as respectful as possible.”

Alicia Bray-Whitworth, Jemma Edwardes, Sarah Lebaigue: Let’s Talk CPR – A campaign video to raise awareness of the effects of CPR

“Wanting to avoid isolating the audience with the graphic reality of what CPR can do to a fragile, terminally ill patient. We decided to tell our story using stop-frame animation; this gave us creative license to talk frankly about the issues. Using the rhythm of a heart beat with a calm, authoritative narration of the facts and statistics. We chose not to include any emotive background music, wanting to create space for a logical rational thought process to take place, making it easier to talk more openly about our hopes for our last moments.”

The Art and Medicine session at the Bevan Commission conference outlined the above work and showcased the creative results. It was a packed event,  chaired by distinguished Professor John Wyn Owen who, amongst many roles, is a professorial fellow of the Royal Society for Public Health. He introduced the topic of art and medicine, explaining that these were once considered to be unrelatable. I then outlined the work of Talk CPR and Falmouth University to the audience. The artwork was on display for all conference delegates to view and created much discussion. We heard from the audience how the arts can and should also be an agent for change. During the session, I learned about many other Welsh healthcare projects that need to incorporate such art, and it created a dialogue on how this can be done.

Summing up, Professor Wyn Owen outlined how the arts and humanities touch many people’s lives, encompassing those things that make life worth living, but also contributing to a country’s civilisation and enhancing the quality of health and wellbeing.

Acknowledgement
Thank you to the following students from Falmouth University who created artwork for this project:

The Plan: James Cook, Joe Arnold, Hannah Hosegood, Sam Baker.
Let’s Talk CPR: Alicia Bray-Whitworth, Jemma Edwardes, Sarah Lebaigue.
The Conversations Project: Theo Hallas.
Little questions, big conversations: Florentino  Alameda Monteiro, Poppy Andruskevicius, Adele Bright, Ellie Woodman.
#talkdeath: Martha Holmes, Lucy Scholes, Theo Penrice.

Their lecturers, Nikki Salkeld and Ashley Rudolph, made this project happen and are the driving force behind the Moth project at Falmouth University.

Links

  • Follow Mark Taubert @DrMarkTaubert
  • Read more post in the Arts and Palliative Care series on the EAPC Blog.
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Art therapy and the restoration of capacity in palliative care

NEW SERIES: The Arts in Palliative Care . . . we shall be looking at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Today, Irene Renzenbrink, art therapist and social worker from Melbourne, Australia, looks at how the arts can unlock opportunities for creative expression.

Irene Renzenbrink working on a project.

Although the benefits of art therapy in reducing anxiety and depression in oncology and palliative care patients are well known, services are still limited by lack of funding and the perception that these services merely offer simple diversion. However, the use of the arts in therapy can restore a sense of capacity that is often lacking when patients feel helpless, passively undergoing their experience of illness. According to Nigel Hartley (in Monroe and Oliviere, 2007), patients are often “surprised by their artistic efforts, giving them an unexpected feeling of self- worth as well as a new sense of meaning to their living and dying.” Family members, friends and staff can also experience the relationship with the patient in a ‘fresh and new way’.

Figure 1

When Mrs Hinson (pictured here) was a patient at St Joseph’s Hospice in East London, UK, in 1964, she gave her doctor, Cicely Saunders, a description of various symptoms and ills and then went on to say, “Well doctor, the pain began in my back, but now it seems that all of me is wrong.” It was through conversations with patients and Saunders’ holistic training and deep compassion that the concept of total pain was born. (Clark, 2014). However, a focus on everything that is wrong can lead to what is known in expressive arts therapy as ‘problem saturation’. While it is, of course, essential to focus on pain and symptoms in order to relieve a patient’s suffering there is also a danger that opportunities to ‘lift the spirits’ through imaginative creative expression will be missed.

Figure 2

“I feel broken.”

A devoted but exhausted daughter whose elderly mother was dying was encouraged to use some art materials while we sat together at the patient’s bedside. She painted a cup that was cracked but it still held her favourite raspberry tea. ( Fig.2) Surprised and pleased by her efforts, she went on to say, “ I feel broken. I feel like I’m losing myself.” She went on to ‘mend’ the crack in the cup with glue as if to restore her sense of self.

A man in his late 50s who often felt that he had been defined and judged by his history of addiction, unemployment, and estrangement from family, was being treated for incurable and terminal cancer. Familiar with art therapy after being involved in a rehabilitation programme he used soft pastels to draw what he called, “Life’s ups and downs.” (Fig. 3)

Figure 3

“Life’s ups and downs.”

 

When I asked him about the inner heart that he had drawn with a wavy line inside the larger red heart, I was deeply moved by his reply: “That’s the part of me that’s still whole.”

We must not forget that art-making in the context of a therapeutic relationship can help patients make visible some of their deepest thoughts, feelings and aspirations. Opportunities to engage the imagination can also lighten their mood and restore a sense of capacity.

When a patient feels broken and says that “all of me is wrong” we can help them to discover or reconnect with that part of themselves that still feels whole.

References

Clark, D. ‘Total pain’: the work of Cicely Saunders and the maturing of a concept. September 25, 2014, End of Life Studies, University of Glasgow. Retrieved from endoflifestudies.academicblogs.co.uk September 25, 2017.

Hartley, N, in Monroe, B. and Oliviere, D. ( Eds) (2007), Resilience in Palliative Care: Achievement in Adversity, Oxford University Press.

Renzenbrink, I. in Gilbert, P. ( Ed.) 2013 Spirituality and End of Life Care, Pavilion.

More about the author . . .
Irene Renzenbrink is an Australian social worker and art therapist who has worked in the field of palliative and bereavement care for 40 years. She is currently completing a doctorate in Expressive Arts Therapy at the European Graduate School in Saas Fee, Switzerland. A member of the International Work Group on Death, Dying and Bereavement, Irene will be teaching Master Classes for Cruse Bereavement Care in the UK in early 2018.

Read more post in the Arts and Palliative Care series on the EAPC Blog. We shall be publishing one post each week from therapists, health professionals and others involved in bringing the arts into a palliative care setting.  

Posted in PATIENT & FAMILY CARE, The Arts in palliative care, Therapies | Tagged , | 1 Comment

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

Professor David Oliver, University of Kent, UK, and a board member of the European Association for Palliative Care, describes key activities that were discussed at the autumn board meeting held in Dublin, Ireland, on 17 to 19 October 2017.

Prof David Oliver

The past two years have been a period of transition and now, with our new base in Belgium, we are looking at consolidation and growth for the next two years of the current board. A wide-ranging agenda was set for our meeting and this blog post aims to give you an overview of the important topics that the board discussed.

 

Our EAPC Board colleague from France, Anne de la Tour, is also president of SFAP, the French palliative care association. Anne is busy with the national association and therefore made the decision to resign from the EAPC board. She will be replaced by Dr Sébastien Moine. Sébastien is a French doctor, currently working with Professor Scott Murray in Edinburgh. We would like to take this opportunity to thank Anne for her hard work on the board – we will miss her – and to welcome Sébastien.

EAPC Congresses  – Plans are progressing well. The 10th World Research Congress will be held in Bern, Switzerland from 24th to 26th May 2018. Abstracts are being accepted until 31st October 2017. Join us in Bern and register now!

2018 is a significant year in palliative care. The EAPC will be celebrating its   30thAnniversary and 2018 also marks the centenary of Dame Cicely Saunders’ birth, both of which coincide with the Bern Congress. More on the celebration to come! Follow us at #EAPC2018.

The 16th World Congress of the EAPC will be held in Berlin from 23rd to 25th May 2019. The theme will be ‘Global palliative care – shaping the future’. Please put the dates in your diary!

World Health Organization (WHO) – The EAPC is continuing to build links with the WHO. EAPC CEO Julie Ling recently attended the WHO European Regional Meeting in Budapest. This important area of influence will continue to develop.

European Union (EU) – Professor Phil Larkin, EAPC President, spoke at a meeting at the European Parliament in Brussels earlier this year and a report on palliative care is being prepared for publication in 2018 by the Council of Europe, which may influence the development of palliative care in the EU over the coming years. Phil Larkin and board member, Professor Tiina Saarto, will address the Council in January.

The EAPC has been represented at the Civil Society Forum (CSF) on Drugs and the EAPC was included in the recent Intercessional Meeting of the United Nations Commission on Narcotic Drugs in Vienna. Professor David Oliver, a board member and member of the EAPC representative on the EU CSF on Drugs was asked to be a panelist at the section of the meeting considering the accessibility and availability of controlled drugs – see blog post.

The EAPC is now based in Belgium. Pictured here the ‘Carpet of flowers’ in the Grand Place, Brussels.
Image: Collectorofinsignia, Wikimedia

Social media – growing from strength to strength! There has been a further 27 per cent increase in EAPC social media use over the past year. The average number of views of the blog posts is currently 270 per day from 182 countries worldwide and we now have 4,345 followers on Twitter, from 45 countries.

Anyone may register to receive an email notification each time an article is published on the blog – or follow us on Twitter @EAPCOnlus. See all our social media links below.

EAPC Taskforces and Reference Groups – There are currently 14 EAPC taskforces and five Reference Groups working on projects on a range of topics. The most recent taskforce on refugee and migrant health was approved by the board at this meeting. More details on taskforces/reference groups can be found here. We are always keen to hear from our members – if you have an idea for a new taskforce project please email Julie Ling our CEO.

EAPC Newsletter – An EAPC Newsletter is being produced and the aim is to send it to all members of the national associations across Europe, giving an update on the work of the EAPC and events across Europe. Look out for a communication from your national association or society.

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.

Anyone is welcome to contact the President, Professor Phil Larkin, or the Chief Executive Officer, Julie Ling. Please email them here.

Join the EAPC palliative care social media community

10th EAPC World Research Congress 2018 – Submit your abstract now! Deadline for submissions 31 October 2017

 

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Palliative care for slum populations: A case study from Bangladesh

Shahaduz Zaman PhD, Research Fellow, School of Interdisciplinary Studies, University of Glasgow, Dumfries, Scotland, explains the background to his article published in the July/August issue of the European Journal of Palliative Care.

Dr Shahaduz Zaman

Globally, there are very few examples of community-oriented end of life care in resource-poor settings. Among the 160 million inhabitants of Bangladesh, it is estimated that more than two million people are currently living in slums in the city of Dhaka. The number of slums in the city is believed to be over 9,000.

Similar to the situation in other developing countries, palliative care remains a major unmet need in Bangladesh.

The Centre for Palliative Care (CPC), in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA), piloted a one-year project on homecare outreach palliative care service in the two slum settings in Dhaka, Bangladesh. The CPC is based at the only medical university, Bangabandhu Sheikh Mujib Medical University (BSMMU), in Dhaka.

There are enormous challenges in running a slum-based community palliative care project of this type, characterised by a highly mobile population, informal power structures, and high levels of uncertainty.

Korail slum

This project was taken forward through a community-driven, public health approach. Eight female volunteers in the community were trained to provide home-based palliative care, including physical, social, psychological and spiritual care to their patients. The volunteers were supported by doctors and nurses of CPC. In addition, a monthly food assistance package was provided to the project beneficiaries.

An independent research organisation in Bangladesh undertook an evaluation of this palliative care project under my supervision one year after inception. The evaluation was funded by a grant from the WHPCA. We found that in the context of extreme poverty, and a complete lack of health services, it became very difficult for the palliative care project to determine the inclusion criteria for the palliative care. However, despite the challenges, a total of 106 patients and their families benefited from the work. It was also found that the clients are highly satisfied with the services they have received. The community volunteers who were chased away by slum dwellers at the beginning of the project are now made welcome in people’s houses. As one respondent said:

“Both of us (husband and wife) are old now and there is no one to look after us. We take care of each other, but when both of us get sick, then there is no one left to take care of us in this shanty. Girls (Palliative Care Assistants) from the office visit our home regularly and look after us. They spend a good time with us, talk to us freely and we share our thoughts with each other. They are like family to us.”

The WHPCA’s support played a crucial role in implementing the project and is continuing its support onwards to the next stage of the project. Nevertheless, we think the sustainability of the project remains in doubt while it continues to depend on external resources.

Given this background, we are about to start a novel community engagement intervention in the slum, which will be delivered through community theatres and is being made possible with the support of an Arts and Humanities Research Council/Medical Research Council grant. I will be involved in this next stage as Principal Investigator, working with an interdisciplinary team based at the University of Glasgow, the non-governmental organisation BRAC, and local community engagement teams in Bangladesh.

In a country where almost all the available palliative care services have taken institution-based approaches, following western models, this community-based initiative in Bangladesh could serve as a public health model for palliative care in other resource-poor settings.

Links

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, Palliative care for slum populations: A case from Bangladesh’ by Shahaduz Zaman, Nezamuddin Ahmed, Mamun Ur Rashid and Ferdous Jahan, published in the July/August 2017 edition of the European Journal of Palliative Care (EJPC). (vol. 24.4).

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.

YOU CAN ALSO DOWNLOAD A FREE COPY OF THE FULL ARTICLE HERE.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog

 

 

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, NATIONAL & INTERNATIONAL REPORTS | Leave a comment