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

Natasha Pedersen, member of the EAPC Board of Directors, and Julie Ling, CEO of the EAPC, report on the first face-to-face meeting of the new board held in October.

Left to right: Julie Ling and Natasha Pedersen.

A new board was elected at the EAPC World Congress in Berlin in May this year.  Since May, board members have been working remotely but met in person for the first time in October 2019 in Malahide, Co. Dublin, Ireland. Six members were re-elected from the last board: Danila Valenti, Josep Porta Sales, Sébastien Moine, Daniela Mosoiu, Catherine Walshe and, last but not least, the new EAPC President, Christoph Ostgathe. We were also delighted to elect Sandra Martins-Pereira, Jeroen Hasselaar and Sébastien Moine as Vice-Pesidents; Catherine Walshe as Treasurer and Gert Huysmans as Secretary.

The new board members: Sonja McIlfatrick, Sandra Martins-Pereira, Natasha Pedersen, Martin Loučka, Jeroen Hasselaar, Karl Bitschnau and Gert Huysmans were all keen to gain a better understanding of the everyday working of the EAPC. On the first day, some time was set aside to orient the new members to the organisation. Ex-President, Phil Larkin, presented by Zoom call from Switzerland and reflected on his time as president. Augusto Caraceni, chair of the EAPC Research Network, also joined the meeting to give the new board a presentation by Zoom and the opportunity to ask questions.

Taking time out (briefly!) from the EAPC Board meeting: board members at Malahide Castle, Co. Dublin.

Meet the EAPC Board of Directors 2019 to 2023

To find out more about our board members – what inspired their career in palliative care, their achievements and what they plan to bring to the board – read their personal statements here.

The success of the Berlin congress was discussed. It had attracted the most delegates of any EAPC congress with 3,039 attendees. More than 1,000 congress participants completed the evaluation giving generally positive feedback. All feedback, good and bad, is used in the planning of our next main congress. The 17th EAPC World Congress will take place in Helsinki, Finland, on 20 to 22 May 2021. In the meantime, we are busy planning the EAPC World Research Congress, which will take place in Palermo, Italy (14 to 16 May 2020). The board were pleased to hear that the scientific committee were already at a very advanced stage in the planning of the congress.

Board members were really interested in the work of the EAPC groups and want to help and support them in any way they can. Each task force and reference group has a dedicated board link to help with this. (You can find out more about all our groups here). The board also approved a proposal to review the 2009 EAPC Standards and Norms in Palliative Care paper. Work is to begin on this shortly.

The EAPC continues to participate in four European-funded research projects, one funded by Erasmus and three H2020 projects. View the list of EU-funded projects in which we are involved here. Some of these research projects have already contributed articles to our blog, which you can view here – we hope to publish more in the future.

Your voice matters…

The next board meeting will take place in Bologna, Italy, in March 2020. As always, the board are keen to hear from members about the issues that matter most to you. Please feel free to contact either the President or CEO if you have any issues you would like the board to address.

Join the EAPC palliative care social media community and keep up to date with our activities

Join us in Palermo for the 11th EAPC World Research Congress #EAPC2020

Please visit the congress website for full information. Don’t forget to join the EAPC as an individual or associate member for a reduced conference rate!

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

Developing general palliative care using patient narratives

THIS MONTH’S EDITOR’S CHOICE FROM ‘PALLIATIVE MEDICINE’

Stine Gundtoft Roikjaer MScPH, RN, is a PhD student at the Southern University of Denmark, and a member of the PROgrez research group, Medicine2 cardiology, Slagelse Hospital, Region Zealand, Denmark and The Knowledge Centre for Rehabilitation and Palliative Care, REHPA Denmark. Here she explains the background to her research study and longer article published in the December 2019 issue of ‘Palliative Medicine’ and selected as this month’s ‘Editor’s Choice’.


The woman, Claire, in front of me is crying silently. Claire is in her fifties and alone – she has raised two children by herself but, as it should be, they have left home to establish their own life.

The story of her illness contains several hospital admissions due to both epilepsy and advanced cardiac disease; her most recent diagnosis is heart failure. She is telling me that she is afraid like never before and feels completely alone. Tears are streaming down her face. I ask her if she could bring this up in her next visit at the heart failure clinic. She shakes her head slightly: “No, what for?” When she goes to the clinic the focus is on the illness and blood samples and it doesn’t feel like a place to tell her story.


Stine Gundtoft Roikjaer.

Narrative interventions are more prominent in specialised palliative care than in general settings, and research shows how they positively affect the patient’s experience of quality of life. However, as the above story shows, we still need to acknowledge the meaning of narratives in a general palliative setting.

This is exactly what we are aiming to do in my PhD study at University of Southern Denmark and Slagelse Hospital in Region Zealand, Denmark. The PhD study comprises comprehensive use of patient narratives on multiple levels – in the development process, in the intervention and in the evaluation process.

We have based the overall study designon the Medical Research Council’s template to design and evaluate complex interventions as well as the democratic and participatory principles of action research.

First, we conducted a systematic integrative review on the use of personal narratives in palliative care as well as an interview study on the meaning of living with heart failure. We then presented and discussed findings from these studies with a multidisciplinary team using focus group interviews. The outcome of this collaborative work was not only an awareness of the need for a holistic approach in the care of heart failure patients, but also an acknowledgement of the clinical need for a systematic method.

Currently we are in the midst of trying this systematic yet holistic palliative care intervention at the heart failure clinic at Slagelse Hospital in Denmark. The patient’s personal narratives are underpinning the intervention and care plan.

Data on the intervention is gathered through participant observational design and qualitative interview with patients. The preliminary results are promising in terms of both acceptability and feasibility and seem to positively influence the patients’ quality of life.

I ask Claire if she would have liked a place to tell her story and if it would have been beneficial to her. She answers: “Yes I would! I think it would. Maybe it would open your eyes to something else.”

Note: For reasons of confidentiality and privacy, the name of the person involved in the study has been changed.

Links and references

  • Roikjaer, S. G. et al. (2019) ‘The use of personal narratives in hospital-based palliative care interventions: An integrative literature review’, Palliative Medicine. England, p. 1255-1271. doi: 10.1177/0269216319866651.
  • Craig, P. et al.(2013) ‘Developing and evaluating complex interventions: The new Medical Research Council guidance’, International Journal of Nursing Studies. Elsevier Ltd, 50(5), pp. 587–592. doi: 10.1016/j.ijnurstu.2012.09.010.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE
This post relates to the longer article, The use of personal narratives in hospital-based palliative care interventions: An integrative literature review’ by Stine Gundtoft Roikjær,  Malene Missel, Heidi Maria Bergenholtz, Mai Nanna Schønauand Helle Ussing Timm, published in Palliative Medicine 2019 Volume: 33 issue 10; page(s):1255-1271. doi: 10.1177/0269216319866651. Article first published online: 1 August 2019. Issue published: 1 December 2019.

  • Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter @palliativemedj 

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

CALL FOR PAPERS FOR A SPECIAL ISSUE OF PALLIATIVE MEDICINE ON BIG DATA IN PALLIATIVE AND END-OF-LIFE CARE
The publication of a special issue on ‘Big Data in Palliative and End-of-Life Care’ in Palliative Medicine (2019 impact factor: 4.958) is a great opportunity. We are looking for high-quality contributions from across health and social sciences that have the potential to appeal to an international audience of clinicians, researchers, managers, educators and policymakers. The deadline for submissions is Friday 17 April 2020. View more information and instructions on submitting your manuscript here. Or read an earlier post from Bregje Onwuteaka Philipsen and Lucas Morin here.

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE | Tagged , , | Leave a comment

Volunteering, boundaries and power

AHEAD OF INTERNATIONAL VOLUNTEER DAY TOMORROW (5 DECEMBER), WE CONTINUE OUR SERIES ON VOLUNTEERING HIGHLIGHTING THE IMPORTANT ROLE PLAYED BY VOLUNTEERS IN PALLIATIVE CARE…

Libby Sallnow, an Honorary Senior Clinical Lecturer at St Christopher’s Hospice, UK, the Marie Curie Palliative Care Research Department at UCL UK, and the WHO Collaborating Centre in Community Participation in Long Term and Palliative Care in Kerala, India, explores boundaries, power and the impact of volunteering in end-of-life care.

Dr Libby Sallnow.

Volunteering is a long established and broad field in end-of-life care and a tremendous variety of approaches can be seen around the world. This series of blogs on volunteering has highlighted the importance of looking beyond common assumptions about the role of volunteering and the need to develop a strong evidence base to inform and support their roles.

Many end-of-life care services around the world could not function without volunteers; the financial dependence is well acknowledged as is the unique contribution that volunteers make to the lives of people and their families. Many aspects of end-of-life care services are run by volunteers such as fundraising, bereavement care or charity shops. (1) But volunteering, whilst being a large field in its own right, overlaps with other areas in end-of-life care. The diagram below illustrates two of the most significant interfaces: with workforce and public health approaches.

In many services, volunteers are a component of the workforce, through clinical or other direct support to patients, trustee or administration duties. Within this type of role, the volunteer works with paid members of staff, is subject to rules and governance similar to paid staff and the role is usually determined and managed by the organisation.

A second important interface is that with public health approaches. These approaches understand death and dying as social events with medical components and emphasise the need for a strong societal response alongside clinical services. Volunteers working within a public health approach are not fulfilling specific tasks or roles set by a service but represent a community response to issues around death, dying, loss and care. (2) Importantly, volunteers in this area have the ability to make decisions about the action they or others may take, determine local needs themselves and work alongside professionals or service leaders to build solutions. It is this autonomy that is a defining feature of volunteers within a public health approach.

The diagram illustrates two of the most significant interfaces: with workforce and public health approaches.

A key determinant of where a particular volunteering approach sits on this diagram is the degree of power a volunteer holds and how power is shared or negotiated with the organisation. (3) In a workforce role this power is usually relatively limited as the roles and responsibilities are set by the organisation. Within volunteer-led roles, there is often autonomy to determine processes and practices, but governance structures mean the organisation ultimately holds responsibility. Within the public health aspect, the responsibility and power sits not with the organisation but with the wider community.

In reality, these boundaries are often blurred but determining where a volunteer role sits on this diagram is essential if we are to adequately conceptualise volunteers and volunteering, develop processes that acknowledge and support the differing needs for differing roles and design effective research studies.

These processes should align with the broader aims and aspirations of the volunteer, community or service and should include a consideration of power. This is where we will find the most fruitful and impactful volunteering contribution, for volunteers, patients, services and the wider community.

References and resources

  1. Burbeck R, Low J, Sampson EL, Bravery R, Hill M, Morris S, Ockenden N, Payne S, Candy B. Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom. Journal of Palliative Medicine 2014; 17 (5): 568-574
  1. Kumar S. Models of delivering palliative and end-of-life care in India. Current Opinion in Supportive and Palliative Care 2013; 7 (2): 216–222
  2. Sallnow L, Bunnin A, Richardson H. Community development and hospices: A national UK perspective. In: Wegleitner K, Heimerl K, Kellehear A (eds.) Compassionate Communities: Case Studies from Britain and Europe. Abingdon-on-Thames: Routledge; 2015 p 1-14.

 

Please sign the EAPC Charter on Volunteering

 

Posted in Uncategorized | Leave a comment

Palliative care as a basic healthcare right: A new consensus within the humanitarian community

Continuing our new series about palliative care in the context of humanitarian crises where we shall look at the implications of providing palliative care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Today, we hear from Sphere, a global movement developing humanitarian standards to improve the quality of humanitarian assistance, and Dr Elysée Nouvet, co-author of the Sphere Handbook. The Handbook is one of the most internationally recognized sets of principles and universal minimum standards in humanitarian response. A consensus-based tool, the 2019 edition was developed thanks to the contribution of some 190 organisations, 1,400 participants in live consultations, and nearly 4,500 comments received online. The current edition recognises palliative care as a minimum standard in humanitarian healthcare for the first time in Sphere’s 20-year history.

Dr Elysée Nouvet.

In 2014, the Ebola epidemic was reaching its peak in West Africa. Clinicians and frontline staff across emergency treatment centres were providing healthcare to an overwhelming number of infected patients, in spite of scarce resources and a lack of guidance and know-how. Months later, those caregivers would report about the horrors they had witnessed in the centres: people dying alone and unable to see their loved ones; a sense of fear surrounding human figures in yellow protective suits; patients left without any care – or then again, caregivers dying because Ebola is so highly infectious.

The Ebola crisis struck a lot of people as a culmination of how scary end of life could be. It also shed a light on how unprepared the humanitarian healthcare sector was to provide healthcare to patients who would very likely not survive their illness. Little by little, this sector that traditionally focuses on saving lives realised the time had come for a serious discussion on the matter of supporting the dying. What does preparedness look like in the case of such acute crises? Should specific training on palliative care be provided to healthcare teams?

A couple of years later, this kind of reflection was absorbed into the global revision consultations which led to the fourth edition of the Sphere Handbook Humanitarian Charter and Minimum Standards in Humanitarian Response. The debate among experts and practitioners resulted in the drafting of a new minimum humanitarian standard on palliative care (Palliative care standard 2.7). People in crisis, the Handbook’s current edition quotes, should have access to palliative and end-of-life care that relieves pain and suffering; that maximises the comfort, dignity and quality of life; and that provides support for family members. The term ‘palliative care’ itself now appears 35 times across the whole handbook.

Putting the standard into words: Health chapter co-authors and experts discussing Handbook content and integrating the sector’s feedback during a workshop.

The minimum standards in the Sphere Handbook reflect what the humanitarian sector regards as the best practices available to provide high quality humanitarian assistance – one that truly puts people at the centre of decision-making. As this new standard makes its way into this consensus-based guide, it becomes clear that people caught in humanitarian crises do have a right to access the best possible care – even when they will not survive.

Up until this edition, the Sphere standards included no specific guidance on palliative care. Sphere traditionally describes healthcare in a crisis as the way to reduce excess disease and save lives. Palliative care focuses on optimising a terminally ill patient’s quality of life and on symptom management; it struggles to fit into this definition.

As the outcome of a historically specific discussion, it is fair to assume the new standard and its inclusion of palliative care mirrors a broader shift in cultural medical discourse and developments in clinical expertise, one that recognises the importance of pain management and of supporting a dignified death. As end-of-life care becomes part of the minimum standards for healthcare in emergencies, the health sector gains a stronger voice to promote palliative care as part of the general discourse and make it a reason for funding in health systems in general. Many caregivers who had worked in the Ebola response – and were still morally haunted by the experience – welcome this argument.

Including a palliative care standard in the Sphere Handbook means that a ‘tunnel vision’ focus on saving lives, to the detriment of providing other essential care, is not sitting well with many in the humanitarian community. At the core of humanitarian principles is a commitment to alleviating suffering – regardless of prognosis. The community is, more strongly than ever, voicing its belief that a good death is possible, that providing care outside recovery is meaningful, and that this includes support for family members.

Humanitarian worker using the Sphere Handbook in the field.

The discussion around palliative care in humanitarian settings is likely to grow, especially now that it’s been brought to the sector’s attention and organisations are starting to take steps towards implementing the new Sphere standard. It will be important to make explicit cross references between the palliative care standard and those on mental health and non-communicable diseases. Another important question will be how to attend to spiritual needs of the dying and their loved ones. The importance of spiritual care is explicitly noted in the standard, despite continued discomfort around speaking of spirituality and religion in humanitarian assistance. A challenge will be that of access to resources and materials making dignified care possible. This includes symptom relief treatment and opioids, but also incontinence pads, catheters, and so on.

The main goal will not only be to better alleviate a patient’s suffering, but also to fully ensure the person’s dignity, until the very end. 

This blog post was extracted from a long interview with Dr Elysée Nouvet, palliative care expert and co-author of the Sphere Handbook. Sphere is thankful to Dr Nouvet for significantly contributing to the content.

Links and resources

Read more in the ‘Palliative Care in Humanitarian Crises’ series on the EAPC blog. The series continues in January 2020, with contributions from Rachel Coghlan and Dr Mhoira Leng.

Posted in Palliative care in humanitarian crises | Tagged , | 4 Comments

Can big data be useful for palliative and end-of-life care? Call for papers for a special issue of ‘Palliative Medicine’

Bregje Onwuteaka Philipsen (Amsterdam UMC, Netherlands) and Lucas Morin (Karolinska Institutet, Sweden) are the Guest Editors of the special issue of ‘Palliative Medicine’ on ‘Big Data in Palliative and End-of-Life Care’.

Bregje Onwuteaka Philipsen and Lucas Morin.

Big data is everywhere. We use complex algorithms to find our way to the closest grocery store, to decide where we will spend our next vacations, to control the temperature of our living room, or to see how far we are from the 10,000-step daily routine that our significant other insists we should follow.

Healthcare insurers perfectly understand the value of using routinely collected data to anticipate care needs and to focus economic resources on patients who are the most likely to require specific interventions in the near future. Public health authorities, local care commissioners and hospital managers are also relying heavily on claims data and electronic medical records to organise the provision of medical services according to the expected needs of the population. More recently, researchers and clinicians have started to express a strong interest in wearable sensors to monitor patients at a distance – bolstered by the availability of affordable and reliable devices and by the intense persuasive effort of high-tech manufacturers.

Big data also has powerful applications in research. It allows, for instance, for verifying whether the evidence from published randomized controlled trials applies to the real-world population, for comparing the effectiveness and the safety of various interventions in settings where such trials may not be practically feasible or ethically acceptable, for evaluating the quality of care provided to patients in different countries, or for making prognostic predictions based on seemingly imperceptible data patterns. Routinely collected data are not susceptible to the usual methodological caveats of surveys and clinical studies (namely, non-representativeness of respondents, attrition due to non-participation, recall bias). Linkage with physiological and biological data stored in very large biobanks paves the way for new research questions about the respective role of genetic, familial and environmental factors.

Yet, whether big data can be of use to develop palliative care and to improve the life of patients with serious illness remains largely unknown. While the past decade has been characterized by a considerable number of observational studies making use of large datasets of routinely collected healthcare data (e.g. Medicare, The Surveillance, Epidemiology, and End Results [SEER] Program), most of these studies have remained strictly descriptive.

In 2018, the European Association for Palliative Care (EAPC) mandated a task force to examine the current state of the science on the utilisation of big data in palliative and end-of-life care, to identify important knowledge gaps, and to establish priorities for future research. The first results from the task force’s ongoing work show that there is a need to focus on patient groups that are currently under-investigated (e.g. children and young adults, patients with organ failure, frail older adults, underserved minorities), and that important methodological issues should be addressed (e.g. quality of record linkage across data sources, inclusion and analysis of patient-reported outcomes, risk of bias arising from the use of retrospective cohorts of decedents rather than prospective study designs).

Call for papers for a special issue of ‘Palliative Medicine’

The publication of a special issue on ‘Big Data in Palliative and End-of-Life Care’ in Palliative Medicine (2019 impact factor: 4.958) is a great opportunity. We are looking for high-quality contributions from across health and social sciences that have the potential to appeal to an international audience of clinicians, researchers, managers, educators and policymakers. The deadline for submissions is Friday 17 April 2020.

Links


EAPC Researcher Awards – closing date 30 November 2019…
Have you made an outstanding contribution to research and clinical practice in palliative care? Don’t be shy – apply for #EAPC2020 Researcher Awards NOW! Find more information on the EAPC World Research Congress website here.


 

Posted in EAPC Task Forces/Reference Groups, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Tagged | Leave a comment

Developing EAPC guidance on palliative care for refugees and migrants

Continuing our new series about palliative care in the context of humanitarian crises where we shall look at the implications of providing palliative care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Joan MarstonFriedemann NauckMhoira Leng and Lukas Radbruch review some current initiatives, and explain how the European Association for Palliative Care (EAPC) Task Force for Refugees and Migrants is working with PalCHASE on a new white paper that aims to help strengthen collaboration between palliative care and humanitarian healthcare practitioners and organisations.

Clockwise: Joan Marston, Friedemann Nauck, Mhoira Leng and Lukas Radbruch.

Refugees, migrants and internally displaced persons (IDP) in Europe are a heartbreaking outcome of the continuing unrest in Syria, the Donbass region of Ukraine and of a growing number of people escaping wars, civil unrest and poverty in Africa. Over the past three years there has been a significant increase in interest in refugee, migrant and IDP health from the international palliative care community. This has led to the establishment of PalCHASE –Palliative Care in Humanitarian Aid Situations and Emergencies – a collaborative of palliative care and humanitarian aid practitioners, ethicists, educators, researchers and advocates promoting palliative care integration into all humanitarian aid situation, and into the humanitarian health response.

Small but effective programmes in countries such as Bangladesh with the Rohingyan refugees, Jordan, Palestine and Uganda show that such development can be achieved. International humanitarian health organisations such as Doctors without Borders have acknowledged the need for palliative care within their programmes, and are working towards this. The important inclusion of a Palliative Care Standard in the new edition of the Sphere Handbook, which reaches into a wide range of humanitarian activities, is a significant step forward. The Sphere philosophy that all possible steps should be taken to alleviate human suffering arising from disasters and conflict, and that those affected have the right to assistance, is in alignment with palliative care principles. (You’ll hear more about this in a subsequent post from Sphere).

Steps towards greater collaboration and guidance

The need for strengthening collaboration between palliative care and humanitarian healthcare practitioners and organisations – for education that includes expertise from both groups, as well as guidance on ways to develop this integration – has become increasingly apparent. A number of palliative care practitioners, clinical, psychosocial and spiritual, have indicated their willingness to assist in humanitarian situations and in education. However despite the obvious need for palliative care in humanitarian situations accessing funding has been a challenge.

Where refugees with palliative care needs have settled or have been in transit in countries in Europe with established palliative care and/or hospice programmes, some have been admitted into these programmes and have received palliative care. An assessment of the experiences for both the refugee families and the programmes would be of value to the EAPC Task Force for Refugees and Migrants in Europe.

How the EAPC will contribute – development of white paper

This EAPC task force has been collaborating with PalCHASE  (supported by International Association for Hospice & Palliative Care – IAHPC) and is to develop a white paper that will include the following activities:

  • Undertaking a literature review.
  • Assessing the palliative care needs of refugees of all ages from neonates and children, to older persons.
  • Making recommendations for palliative care professionals, as well as for professionals working in humanitarian organisations.

The white paper is to describe structural and organisational aspects as well as methods for screening, assessment and treatment. The paper will be used to formulate the agenda for the task force’s later activities and to produce an action plan for the task force and the EAPC. Read more about the EAPC Task Force for Refugees and Migrants in Europe here. .

More about the authors…

Joan Marstonis ICPCN (International Children’s Palliative Care Network) Global Ambassador and Co-Chair PalCHASE.
Follow Joan on Twitter @JoanPalchase

Friedemann Nauck, Clinic for Palliative Medicine, University Medical Center Goettingen, Germany.

Mhoira Leng, Medical Director, Cairdeas International Palliative Care Trust; Global Health Academy, University of Edinburgh, and Department of Palliative Medicine, Makerere University, Kampala, Uganda.
Follow Mhoira on Twitter @drmhoira

Lukas Radbruch, Department of Palliative Medicine, University Hospital of Bonn, Germany; Chair of the International Association for Hospice & Palliative Care (IAHPC).
Follow Lukas on Twitter @LukasRadbruch

Further reading

Waldman E and Glass M (eds.) A Field Manual for Palliative Care in Humanitarian CrisesOxford University Press; November 2019.  View Marcia Glass and Elisha Waldman’s chapter, Introduction: Why Palliative Care? FREE OF CHARGE  online until 14 February 2020.

Read more in the ‘Palliative Care in Humanitarian Crises’ series on the EAPC blog, Next in the series will be a post from Sphere on the Palliative Care Standard in the new edition of their handbook.

Posted in EAPC Task Forces/Reference Groups, Palliative care in humanitarian crises | Tagged | Leave a comment

A Metaphor Menu for People Living with Cancer

Researchers at Lancaster University have produced a ‘Metaphor Menu for People with Cancer’ – a resource for meaning-making and communication that is freely available for anyone to read and use. Elena Semino (Lancaster University), Sheila Payne (Lancaster University) and Zsófia Demjén (University College London) explain.

“She lost her brave fight.” If anyone mutters those words after my death, wherever I am, I will curse them.”

Clockwise from top: Sheila Payne, Zsófia Demjén and Elena Semino.

This is how Kate Granger – a British doctor in her thirties – opened a 2014 newspaper article about her experience of living with incurable cancer, of which she died two years later. Many others have similarly rejected ‘Violence’ metaphors for cancer, and the UK’s National Health Service uses ‘cancer journey’ instead of any reference to fights or battles.

This raises some questions, however: What metaphors are actually used to talk about cancer? And are some metaphors better than others, especially for patients? 

A project we carried out at Lancaster University aimed to answer these questions. We found evidence of the potentially harmful effects of Violence metaphors, for example when someone whose cancer has spread says: I feel such a failure for not winning this battle. However, we also found that no metaphor is inherently good or bad for everyone. Different people find different metaphors helpful as ways of coping with and communicating about different aspects of the complex experience of having cancer.

These findings created a challenge for us when people asked us to propose a set of guidelines based on our research. On the one hand, we knew that we could not produce a list of dos and don’ts that would work for everyone. On the other hand, we also could not just say that things were too varied and complex for us to come up with any suggestions for helpful and sensitive communication about cancer. This led us to create the ‘Metaphor Menu for People Living with Cancer’.

The Metaphor Menu consists of a series of quotes from people with cancer that involve a wide range of different metaphors, drawing from music, nature, fairground rides, and so on, as well as journeys and fights. The idea is that, as when selecting food in a restaurant, different people will prefer different metaphors, but hopefully everyone will find something that is right for them at a particular point in time. Metaphors are resources for communication and meaning-making. The more we have available, the better, especially when going through hardship.

How you can use and contribute to the Metaphor Menu

We officially launched the Metaphor Menu on 7th and 8th November 2019, in Lancaster and London. It is now freely available on our project website for anyone to read and use. We do not intend it as an end point, however, but as a tool to stimulate new creative ways of talking about cancer, both for patients and health professionals.

If you are interested, feel free to use the Metaphor Menu, including by translating it into other languages. We would be very grateful to hear from you if you have any feedback, if you would like to suggest new metaphors, or if you use the Menu in any way, whether in a personal or professional capacity. You can contact us via the feedback form on the Metaphor Menu webpage or by emailing Elena Semino

Reference
Semino, E., Demjén, Z., Demmen, J., Koller, V., Payne, S., Hardie, H. and Rayson, P. (2017) The online use of ‘Violence’ and ‘Journey’ metaphors by cancer patients, as compared with health professionals: a mixed methods study, BMJ Supportive and Palliative Care, 7, 1, 60-66.

Links

Follow us on Twitter.

Read some earlier posts on metaphor by these contributors on the EAPC blog.

 

Posted in PATIENT & FAMILY CARE | Tagged | Leave a comment