Editing an academic journal: what is it like, why does it take so long, and would you do it?

Dr Catherine Walshe, Editor of Palliative Medicine, shares what it’s like behind the scenes of the EAPC’s official research journal and explains how you might contribute as a screening editor.

Dr Catherine Walsh, Palliative Medicine Editor

Dr Catherine Walsh, Palliative Medicine Editor

You’ve spent hours crafting your article, following on from a long period of data collection and analysis. You spend a few more hours making sure it meets the submission requirements of your chosen journal. You then spend even more time working out how to upload it to the electronic submission system of the journal. Hopefully, you then receive an acknowledgement that it’s arrived. And then? Well, what does happen then? As an author, it probably feels like your article has disappeared from sight whilst you wait anxiously to hear from the journal. And wait you do at times. Be grateful that you don’t do work in economics and business, as the mean time in their discipline from submission to acceptance is around 18 months, compared to chemistry, which had the shortest mean time across disciplines in one study of around nine months, with biomedical journals taking a little longer (Björk and Solomon 2013). Why does it take so long? What are those editors doing with your manuscript? Don’t they know how important your work is?

Palliative Medicine Editorial Manager, Debbie Ashby

Palliative Medicine Editorial Manager, Debbie Ashby

Well, at Palliative Medicine, the research journal of the European Association for Palliative Care (EAPC), we can tell you a little about what happens within our system. Once your article has been submitted, it’s checked to make sure it meets our general requirements by the Editorial Manager and then moved forwards into the main system within Manuscript Central. Papers are then assessed by two to four ‘screening editors’ to see if they meet some general criteria, essentially that they contribute to the field of palliative care and are ethical and robustly conducted studies. We aim to do this within three to four weeks of submission. Sadly, we don’t have space for all papers, and many have to be declined at this point. For those going for review, we then source two independent external peer reviews. This, unfortunately, is where delays creep in as people are increasingly busy and perhaps don’t let us know if they are unable to do the review. We may have to repeat this invitation process a number of times. If you wonder where your manuscript is within the system it’s usually here – sourcing reviews – and then waiting for people to return reviews in a timely manner. Frustrating for you and for us, but we do understand the pressures people are under as we are all reviewers ourselves. We aim to let people have a decision quickly once the reviews are in, and then you will know if you have been asked to make revisions or not.

Interested in joining our team as a screening editor?

We know it can be a long and tortuous process, and one which I never fully appreciated until I joined the editorial team of Palliative Medicine. Being an editor, however, is a very rewarding role, it’s great to see submitted papers making an impact within our community and helping to create a robust evidence base for patient care. You can also be part of trying to make the system more user-friendly and responsive! Might you be interested in joining our team at Palliative Medicine? We’re currently looking for a new screening editor to work with us and want this opportunity to be widely known. Click here to find full details of the sort of person we are looking for and some information about the role. And once you’ve looked at that, and if you have questions, please don’t hesitate to email me with any further queries. Application is initially by CV to me by 11 March 2016.

Reference
Björk, B.-C. & Solomon, D. (2013) The publishing delay in scholarly peer-reviewed journals. Journal of Informetrics, 7(4), 914-923.

Palliative Medicine ‘Editor’s choice’ on the EAPC Blog . . .
Each month, the editor of Palliative Medicine selects an article from the journal and invites the author(s) to write a post for the EAPC Blog about the background to the research with links to a free download copy of the full article. You can read the latest and all the previous Palliative Medicine ‘Editor’s choice’ posts here.

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Metamorphosis: The transformation process for palliative care professionals – or how to work in palliative care and not die trying

Rafael Mota Vargas and Vinita Mahtani-Chugani, palliative care physicians from Spain, explain the background to their longer research article selected as ‘Editor’s choice’ in the February issue of Palliative Medicine.

‘How do you manage to do this for a living?’

Dr Rafael Mota Vargas

Dr Rafael Mota Vargas

Palliative care professionals are frequently faced with this question. Are professionals expected to achieve particular abilities for palliative care? Or are they expected to demonstrate a kind of ‘Palliative Profile’?

Also, are professionals actually aware of the associated risks they are actively undertaking? Are they able to identify the emotions arising from their daily routine as related to suffering and death? And, if so, are they trained to handle them appropriately, and are they provided with effective self-care strategies?

These were the key questions that led our group of palliative care professionals in Extremadura (Spain) to carry out a research study on the emotional impact on practitioners through daily contact with suffering, as well as the self-care strategies they employ in order to conduct their work satisfactorily. At the same time, we have tried to describe the trajectory of these practitioners and the factors that influence this process.

For this purpose, we worked closely with a qualitative research expert, Dr Vinita Mahtani from the Canary Islands, who supported us with the methodological procedure.

 

Dr Vinita Mahtani-Chugani

Dr Vinita Mahtani-Chugani

Dr Mahtani-Chugani comments:

 

“When you asked me to contribute to this blog it brought up all the memories of how we began to work together.

Once upon a time . . . life decided to put into my path a wonderful multidisciplinary team of professionals. We created an intense interaction based on a shared curiosity to reflect on who we are, where we come from and where we are headed.

I had the opportunity to guide you in the use of qualitative methodology and analyze together what exactly was taking place in your lives. I am grateful to life for all the learning we have shared.”

The analysis revealed a common trajectory followed by participants in their working lives: Pre-palliative care/Honeymoon/Frustration/Maturation. These phases, depending on the relationship between the cost of caring and the satisfaction of caring, can influence both the care provided to patients and families and their own personal circumstances. Being aware of this risk, and implementing self-care strategies, can protect and enable us to conduct our work in an optimal manner. The result of this process, which we have metaphorically termed ‘metamorphosis’, is the transformation of a professional who can work satisfactorily within a palliative care context. Based on the arts- based research framework we have transformed the results into a documentary called ‘Metamorphosis’.

We hope that experienced professionals working in palliative care can somehow feel involved by the scope of our study, that beginners will find it a useful tool to foresee further feelings, and that it can also help professionals from other disciplines and our loved ones to have a better understanding of the particular environment that we face.

More about the authors . . .
Rafael Mota Vargas is a physician in the Palliative Care Team at the Infanta Cristina Hospital Complex, Badajoz and part of the Extremadura Health Service (Servicio Extremeño de Salud – SES), Spain.
Vinita Mahtani-Chugani is a physician in the Research Unit Hospital, Nuestra Señora de la Candelaria, Canary Islands Health Care Services, Tenerife, Spain. 

2.coverDownload a free copy of the full article
This blog post relates to the longer article, ‘The transformation process for palliative care professionals: the metamorphosis, a qualitative research study’, by Rafael Mota Vargas, Vinita Mahtani-Chugani, María Solano Pallero, Borja Rivero Jiménez, Raquel Cabo Domínguez, and Vicente Robles Alonso published in Palliative Medicine February 2016 vol. 30: 161-170, first published on 20 April 2015, doi 10.1177/0269216315583434.

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

 

 

 

 

Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH | Tagged , | 1 Comment

What message do Spanish media convey about palliative care?


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL

In a post that relates to their longer article published in the January/February edition of the European Journal of Palliative Care, José Miguel Carrasco and Carlos Centeno, researchers on the ATLANTES Research Programme, Institute for Culture and Society, University of Navarra, Pamplona, Spain, explore the Spanish media to find out how they talk about palliative care.

Dr José Miguel Carrasco

Dr José Miguel Carrasco

What comes into people’s heads when they hear news about palliative care? What does society think about care at the end of life? These are just two of the questions that we ask ourselves in the Atlantes Programme: Human Dignity, Advanced disease and Palliative Care, of the University of Navarra (Pamplona, Spain). We know that lack of knowledge and awareness is one of the most important barriers to palliative care services development (1), and that is why one of our research lines consists precisely in studying the ‘messages’ related to this type of care. We explore the factors generating the social perception about palliative care, working jointly as health and social sciences professionals.

Dr Carlos Centeno

Dr Carlos Centeno

Mass media are one of the main means of socialisation and public opinion creation (2), and frequently palliative care appears there in its diverse formats (news, interviews, reportages, etc.). Because of its huge influence on people, we decided to explore and describe the ideas and messages on palliative care that are circulating in Spanish mass media.

After searching in eight newspapers, five magazines, five TV channels and four radio stations, we found that a substantial part of palliative care references appearing in the Spanish press, are related to political, organisational and health management or social debate issues. Moreover, they appear in opinion articles linked to dying with dignity, euthanasia, assisted suicide, legislative proposals on end of life, and so on. A noticeable ideological component is identified.

Nevertheless, an informative and educational perspective of palliative care stands out when it appears in specific reportages, especially on radio and TV. When patients, relatives and health professionals’ testimonies appear, the human component arises, as well as the quality of life, and the holistic approach; putting back the focus on patients and medicine itself.

Our work shows how the presence of palliative care in mass media does not necessarily guarantee the transmission of messages about the possible benefits of palliative care to patients, to their environment and to the general public. Messages that are ideologically and politically charged might overshadow those with informative and reality-reflective purposes.

To better understand social perceptions about palliative care, the influence of mass media on the general public should never be underestimated. To know ‘who’ is saying ‘what’ and ‘how’, will allow us to design strategies to promote a more positive image of palliative care, based on real practice and our contribution to patients and society.

4_cover_2Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘What message do Spanish media convey about palliative care?’, by José Miguel Carrasco and Carlos Centeno, published in the January/February 2016 issue of the European Journal of Palliative Care (vol. 23.1). 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.

References
1. Lynch T, Clark D, Centeno C, Rocafort J, De Lima L, Filbet M, et al. Barriers to the development of palliative care in Western Europe. Palliat Med 2010;24(8):812-9.
2. Taiwo R, Odebunmi A, Adetunji A. Perspectives on Media Discourse. Munchen: LINCOM; 2007.

Links
ATLANTES webpage.


An example of recent media coverage on palliative care following the death of David Bowie
A doctor’s thank you letter to David Bowie, published last week on the British Medical Journal Supportive & Palliative Care blog, has “helped lift the lid on a taboo subject”. The letter, re-tweeted by Bowie’s son Duncan, went viral. Dr Mark Taubert, a palliative care consultant and clinical director for palliative medicine at Velindre NHS Trust in Cardiff, UK, said the music star’s death had been the subject of conversations he had with patients about the concept of dying and had facilitated discussions about End-of-Life Care preferences.

Links
BMJ blog post.

BBC interview.
El Mundo (in Spanish).


 

¿Qué mensaje transmiten los medios de comunicación españoles sobre los cuidados paliativos? 

José Miguel Carrasco y Carlos Centeno, investigadores del Programa ATLANTES del Instituto Cultura y Sociedad de la Universidad de Navarra (Pamplona, España) han explorado medios de comunicación españoles para conocer cómo hablan sobre cuidados paliativos.

Dr José Miguel Carrasco

Dr José Miguel Carrasco

¿Qué viene a la cabeza de las personas cuando oyen hablar sobre cuidados paliativos? ¿Qué piensa la sociedad sobre los cuidados en el final de la vida? Estas son solo dos de las preguntas que nos hacemos en el Programa ATLANTES: Dignidad Humana, Enfermedad Avanzada y Cuidados Paliativos de la Universidad de Navarra (Pamplona, España). Sabemos que el desconocimiento y la falta de reconocimiento son una de las barreras al desarrollo de los servicios de cuidados paliativos (1), por lo que una de nuestras líneas de investigación está relacionada con los ‘mensajes’ vinculados a estos cuidados. Exploramos los factores que contribuyen a la construcción de la percepción social acerca de los cuidados paliativos, trabajando conjuntamente profesionales del campo de las Ciencias de la Salud y de las Ciencias Sociales.

Dr Carlos Centeno

Dr Carlos Centeno

Los medios de comunicación son uno de los principales agentes de socialización y generación de opinión pública (2), y con frecuencia cuidados paliativos aparecen en ellos en sus diferentes formatos (noticias de actualidad, entrevistas, reportajes, etc.). Por su gran influencia sobre las personas, nos propusimos explorar y describir ideas y mensajes circulantes sobre cuidados paliativos en los medios de comunicación españoles.

Tras explorar 8 periódicos, 5 magazines, 5 canales de televisión y 4 de radio, encontramos que una parte importante de las referencias a cuidados paliativos que aparecen en la prensa española están vinculadas a cuestiones políticas, de organización y gestión sanitaria o de debate social. Además, aparecen en artículos de opinión en los que se abordan temas relacionados con muerte digna, eutanasia, suicidio asistido, propuestas legislativas sobre el final de la vida, etc. En ellos se identifica una importante carga ideológica.

Sin embargo, cuando aparecen en reportajes específicos sobre cuidados paliativos, principalmente en radio y televisión, predomina una perspectiva más divulgativa y pedagógica. Cuando en las apariciones se incluyen testimonios de pacientes, familiares o profesionales sanitarios, se pone de relieve el componente humano, la calidad de vida, y la atención holística devolviendo el protagonismo a los pacientes y a la medicina.

Nuestro trabajo muestra cómo la presencia de los cuidados paliativos en los medios de comunicación no garantiza la transmisión de mensajes relacionados con los beneficios que pueden aportar a los pacientes, su entorno y a la población general. Los mensajes con carga ideológica y política pueden eclipsar aquellos con fines divulgativos o que reflejan su realidad asistencial.

Para comprender mejor las percepciones sociales sobre los cuidados paliativos no debe subestimarse la influencia que los medios de comunicación tienen sobre las personas. Conocer quién dice qué respecto a cuidados paliativos, y cómo lo dice, permitirá diseñar acciones orientadas a promover mensajes que generen una imagen más acorde con su práctica y sus contribuciones a los pacientes y a la sociedad.

4_cover_2Lea el artículo completo en el European Journal of Palliative Care
Este post hace referencia a un artículo más largo, “What message do Spanish media convey about palliative care?”, publicado por José Miguel Carrasco y Carlos Centeno en el número de Enero/Febrero 2016 del European Journal of Palliative Care (vol. 23.1). Si tiene una suscripción on-line a la revista podrá descargar este número, y todos los artículos del archivo. También puede buscar en el archivo y descargar artículos mediante suscripción temporal de 10 o 30 minutos. Los miembros de la Asociación Europea de Cuidados Paliativos pueden acceder a precios con descuentos para suscripción on-line a la revista pincha aquí.

Referencias
1. Lynch T, Clark D, Centeno C, Rocafort J, de Lima L, Filbet M, et al. Barriers to the development of palliative care in Western Europe. Palliat Med 2010; 24(8): 812-9.
2. Taiwo R, Odebunmi A, Adetunji A. Perspectives on Media Discourse. Munchen: LINCOM; 2007.

Enlaces
Programa ATLANTES.


An example of recent media coverage on palliative care following the death of David Bowie
A doctor’s thank you letter to David Bowie, published last week on the British Medical Journal Supportive & Palliative Care blog, has “helped lift the lid on a taboo subject”. The letter, re-tweeted by Bowie’s son Duncan, went viral. Dr Mark Taubert, a palliative care consultant and clinical director for palliative medicine at Velindre NHS Trust in Cardiff, UK, said the music star’s death had been the subject of conversations he had with patients about the concept of dying and had facilitated discussions about End-of-Life Care preferences.

Links
El Mundo (in Spanish).
BMJ blog post.

BBC interview.


 

 

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

European Association for Palliative Care and the Civil Society Forum on Drugs

The EAPC has recently been involved in discussions within the European Union (EU) in preparation for the upcoming United Nations General Assembly Special Session on the World Drug Problem (UNGASS). Dr David Oliver, Board member of the European Association for Palliative Care (EAPC) and Honorary Reader, University of Kent, UK, explains the background and why it’s so important for the EAPC to be involved.

Dr David Oliver

Dr David Oliver

The UNGASS meeting is to be held at the United Nations in New York on 19-21 April 2016 and will look at drug control measures. The EAPC was recently invited to join the Civil Society Forum on Drugs (CSF) – the official NGO (non-governmental organisation) engagement mechanism in EU policymaking processes around drug issues. The whole Forum meets annually, although there are ongoing working group meetings throughout the year. The main aim is to look at issues related to drugs and make recommendations to the EU. I have had the privilege to join the meeting and take part in these discussions.

The CSF has made recommendations including:

 

Promoting risk and harm reduction
Encouraging the EU Member States to ensure that harm reduction measures and drug dependence treatment services are available and ensure laws and policies do not inhibit these services, for instance by law enforcement.

Encouraging the UN to make unequivocal statements in favour of removing criminal sanctions against people using drugs, to allow access to treatment, states should look at alternative sanctions for drug-related crime, and all UN agencies to promote harm reduction.

Considering human rights
EU states should abolish the death penalty – in accordance with the right to life.

Drug policies should be non-discriminatory and responsive to the needs of women and girls, ethnic minorities, LGBT communities, indigenous groups, children and youth.

Ensure adequate access to controlled substances for medical purposes.

Greater involvement of Civil Society organisations in these discussions at UNGASS.

The UNGASS meeting will be important for palliative care, as it is vital that access to opioid medication, for medical reasons, is not affected by drug control regulations. The UN drug control regime establishes a dual obligation for Member States – firstly to prohibit the production, trade and use of controlled substances for recreational purposes, but secondly and importantly to ensure there is access to these substances for medical and scientific needs.

The CSF has been very supportive of the EAPC in including this in their discussions with the EU and it has been very interesting in working with all in the Forum over these past months.

Links 

Posted in ADVOCACY & POLICY, EAPC Board Members, Opioid access | Tagged , , | 1 Comment

Teaching spirituality and spiritual care to hospice volunteers – a curriculum to assist trainers

A new curriculum for hospice volunteers, published in November 2015, offers a training programme that specialises in spirituality and spiritual care. Margit Gratz and Traugott Roser have been working in hospice and palliative care (inpatient and outpatient care) for many years and used to teach volunteers. Here, they explain more about the training and provide some useful resources.

Margit Gratz

Margit Gratz

Hospice volunteers are confronted with a variety of patients and caregivers’ spiritual needs. They are expected to deal with spiritual needs and hopes, to identify spiritual distress, and to work with disrupted beliefs and value systems. Hospice volunteers often report that they lack communication skills and that they are overwhelmed with the need to give the required spiritual support. A Germany-wide survey confirmed that there is a need for a spiritual care curriculum to offer assistance in arranging spiritual care training for hospice volunteers. One hospice coordinator said:

“It is helpful for hospice volunteers to be a spiritual being who is able to reflect upon spirituality and talk about it in the encounter. But I can’t imagine spirituality as a subject for teaching but rather a suggestion for self-reflection only.”

Traugott Roser

Traugott Roser

So an explorative study was designed to define the core competencies and course aims. The results allowed the development of a spiritual care curriculum enabling hospice volunteers to deal with spiritual issues and meet expectations. The training concept offers 11 themes:

  • Understanding/definition of spirituality
  • Spiritual needs, distress, hopes, and resources
  • Spirituality in existential situations and crisis
  • Spirituality and meaning of life
  • Belief systems and cultural issues
  • Spirituality and coping/dealing with suffering
  • Introduction into practical spiritual care
  • Spiritual care: presence and communication
  • Spiritual care: „being present and endure in the encounter“
  • Spiritual care: referral to pastoral care service
  • Spiritual care: rituals and creativity.

Each theme is worked out in several parts:

For trainers:

  • Teaching sequences (including objectives and methods)
  • Literature recommendations
  • Training aims (concerning knowledge, skills, and attitude)
  • Teaching material.

For course participants:

  • Working material
  • Manuscript.

curricThe curriculum gives space to work on the institution’s own definition of spirituality, its concept of spiritual care, and its expectations of the volunteers’ spiritual support in the encounter. A reflection on the aims of the training offers the opportunity to adapt the lessons to the institution’s focus and priorities. Hospice services with a religious background might be particularly interested in setting their own focus.

The training concept was evaluated by hospice coordinators and, in particular, by spiritual care trainers working with hospice homecare services. The resulting publication is offered as a printed book that includes an e-book and downloadable PowerPoint presentations. Teaching methods are not only in lecture format – teaching spirituality and spiritual care includes an interactive approach and self-reflecting methods, which are included in the programme.

As members of the European Association for Palliative Care (EAPC) Task Force on Spiritual Care the authors are interested in bringing forward the teaching of spirituality. We would also be delighted for colleagues in other countries to adapt the publication to local requirements and to translate it into other languages (following consultation with the editors).

If you would like further information, please use the comments box below or email Margit Gratz.

References and resources

  • Gratz M, Roser T, Curriculum Spiritualität für ehrenamtliche Hospizbegleitung, Vandenhoeck & Ruprecht, Göttingen, 2016.
  • Germany-wide survey:
    Gratz M, Paal P, Emmelmann M, Roser T, Spiritual Care in the Training of Hospice Volunteers in Germany, In: Palliative & Supportive Care, in press.
  • Explorative study to define the core competencies and course aims:
    Gratz M, Roser T, Paal P, Hospice Volunteers’ Spiritual Care Training: A Discussion on Core Competencies and Course Aims, in preparation.
  • Evaluation with hospice coordinators respectively spiritual care trainers of hospice homecare services:
    Gratz M, Roser T, Kittelberger F, Paal P, Evaluierung eines Spiritual-Care-Curriculums für Hospizbegleiter, In: Zeitschrift für Palliativmedizin, 2015, 16 (2): 57-64.

More about the authors . . .
Margit Gratz
, theologian and palliative care specialist, is a former hospice coordinator and research assistant on the professorship for spiritual care in Munich. She is currently a research assistant at the University of Muenster (responsible for implementation of hospice work and palliative care in the residential homes of the Augustinum group) and teaches volunteers and nurses about hospice work, palliative care and spiritual care.
Prof. Dr. Traugott Roser is a protestant pastor and a professor of practical theology at the University of Muenster, teaching volunteers and nurses in hospice work, palliative care and spiritual care. He worked formerly as a pastoral counsellor in a palliative care unit and as a professor of spiritual care in Munich.

Posted in EDUCATION & TRAINING, SPIRITUAL CARE, VOLUNTEERING IN PALLIATIVE CARE | Tagged , | 7 Comments

‘Good’ and ‘bad’ deaths in interviews with hospice managers

To celebrate four years of the EAPC Blog, we’re delighted to re-publish one of our all-time most popular posts from Elena Semino, Veronika Koller, Lancaster University, and Zsófia Demjén, The Open University, UK. 

Members of the Metaphor in End of Life Care project: (left to right) Zsófia Demjén, Elena Semino and Veronika Koller

Members of the Metaphor in End-of-Life Care project: (left to right) Zsófia Demjén, Elena Semino and Veronika Koller

What is a ‘good’ or a ‘bad’ death from the point of view of health professionals who work in hospices? As part of the project ‘Metaphor in End of Life Care’ at Lancaster University (funded by the ESRC (Economic & Social Research Council)), we tried to find out. We conducted interviews with 15 hospice managers based in the UK. Amongst other things, each interviewee was asked: ‘How would you describe a good and a bad death?’

Almost all interviewees stressed that different people will have different ideas about what is ‘good’ or ‘bad’ in the experience of death. As a consequence, their own job involves finding out and fulfilling the wishes of patients and their families. On the other hand, several interviewees questioned the general belief that a ‘good’ death is necessarily one that happens at home. There was also general agreement that dying in a hospital – ‘on a busy ward’ – does not make for a good death. This was associated in the interviews with hospice care.

The difference between good and bad deaths is partly expressed via contrasting metaphors. A good death was described as involving ‘peace’ and the patient being ‘free’ from pain because the hospice staff have managed to get symptoms ‘under control’. In addition, a good death involves patients and families accepting death as the end of a ‘journey’, and the decision to ‘let go’. In contrast, in a bad death the patient sees death as an opponent against which to ‘struggle’, ‘battle’ or ‘fight’ in order to ‘keep going’. A good death is also described as involving many ‘open’ conversations, in which patients and their families explicitly acknowledge that death is imminent. In contrast, a bad death is described as involving problems ‘in the background’ or in a ‘place’ inside the patient that hospice staff are not allowed to ‘reach’. In some cases, a bad death is caused by ‘conflicts’, ‘tensions’ and ‘struggles’ within families, which prevent the hospice staff from getting everyone to be ‘in the same place’. When a bad death occurs, staff are sometimes left to ‘pick up the pieces’ and need ‘support’ themselves.

Almost all interviewees told stories involving specific (although unnamed) individuals. The ‘good death’ stories mostly involved a successful intervention on the part of the hospice staff. They begin with a description of a problematic situation, such as a man with stomach cancer who has suffered from continuous hiccoughs for a long time and cannot therefore go home to enjoy his wife’s cooking for a little longer. In the next stage of the story, the patients are referred to a hospice, and the staff work as a team in order to: tackle the problems that can be solved in some way; establish as much normality as possible; and prepare the patient and the family for what is to come. For example, acupuncture was used to treat the man’s hiccoughs, so that he could go home and enjoy his wife’s cooking for as long as possible.

In contrast, in ‘bad death’ stories the hospice team’s attempts at intervention are frustrated by circumstances beyond their control. In some cases, the patient is described as having been referred to the hospice at a very busy time, or too late for the staff to establish a relationship with them. In other cases, the hospice staff’s efforts are frustrated by the attitudes of patients, their families, or both. For example, one woman is described as dying in great physical and emotional distress after she:

“did battle with everyone. Nothing was ever right, nothing was good enough, nothing. You couldn’t physically get her comfortable. You couldn’t get in a good place to meet her psychologically. I think she felt that being comfortable was being patronised and that made it really difficult to offer her any support.”

Several interviewees stressed that, in their professional experience, bad deaths are outnumbered by good deaths. All interviewees use the words ‘we’ and ‘team’ to refer to themselves and their colleagues as they work tirelessly and professionally as one. The interviews, therefore, conveyed a strong sense of professional loyalty: hospice managers took the opportunity to make the case for their professional role, and for hospices and hospice care.

To find out more…

More about the authors…
Professor Elena Semino, Department of Linguistics and English Language, Lancaster University.
Dr Veronika Koller, Department of Linguistics and English Language at Lancaster University.
Dr Zsófia Demjén, Lecturer in English Language/Applied Linguistics, The Open University.

This post was first published on the EAPC Blog in May 2013 and is among the five most-viewed posts in the four years from January 2012 to January 2016. If you’re new to the EAPC Blog and missed out on some of our most popular posts, we’ll be re-publishing some of our favourite ‘Golden Oldies’ from time to time.

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

Using the Palliative care Outcome Scale and related Patient Reported Outcome Measures in clinical practice

Dr Liesbeth van Vliet, Research Fellow EURO IMPACT at the Cicely Saunders Institute at King’s College London; Dr Richard Harding, Reader in Palliative Care at the Cicely Saunders Institute at King’s College London, and Prof Irene Higginson, Director of the Cicely Saunders Institute and Professor of Palliative Care and Policy, King’s College London, outline recently published decision support and accompanied guidance on implementing the Palliative care Outcome Scale and related Patient Reported Outcome Measures in clinical care.

Dr Liesbeth van Vliet

Liesbeth van Vliet

Dr Richard Harding

Richard Harding

Professor Irene Higginson

Irene Higginson

 

 

 

 

 

Patients’ and their family caregivers’ symptoms and concerns are central in the provision of person-centred palliative care. Clinicians often underestimate the extent of patients’ and families’ problems, unless they ask directly. This can be done using Patient Reported Outcome Measures (PROMs). One of the most widely used PROMs in palliative care is the Palliative care Outcome Scale (POS) family of measures. This multidimensional measure, originally developed by Prof Irene Higginson, covers all domains of palliative care. It has a patient and family caregiver version, is short, easy to administer, and validated in many languages. See the Box for an example of a POS item.

There are currently over 5,500 registered POS users in almost 100 countries. POS users have free access to a wide range of materials (e.g. language translations). However, during one of our POS training days, we found that clinicians sometimes experienced difficulties with responding to scores on the POS items of information needs, family anxiety, and patient depression while breathlessness is also a difficult to treat symptom.

Box – Example POS item

Box – Example POS item

Therefore, as part of the EU-funded EURO IMPACT project, we decided to create more decision support on how to respond to scores on these specific POS items. To do so, we drafted several recommendations on how to respond to these symptoms based on the available literature. Patient representatives, professionals and researchers from all over the world rated the appropriateness of these recommendations for all POS item scores. Using a Delphi methodology we were able to draft an evidence-based, expert consensus Decision Support Tool on how to respond to patients and family caregivers who experience several degrees of information needs, family anxiety, depression, and breathlessness.

Some key recommendations are:

  • Good patient care, psychosocial support and empathy, and open communication are important for all POS items and all severity of symptoms.
  • When problem scores increase proper assessment of symptoms is recommended.
  • For increasing scores, non-pharmacological interventions are recommended, and pharmacological interventions for high levels of breathlessness and depression.

More detailed recommendations for the different symptoms and their POS scores can be found here. It should be noted that the provided recommendations are not prescriptive, but aim to help clinicians think through the different options when they encounter these complex symptoms.

In order to help successful implementation of PROMs in clinical care, we developed alongside our Decision Support Tool guidance on PROM implementation. This guidance was created based on previous literature and in collaboration with members of the EAPC Task Force on Outcome Measurement. An 8-step implementation guide was developed, from identifying the goals for measuring PROMs via selecting a questionnaire, to evaluating the impact of measuring PROMs on practice.

In conclusion, this study aims to provide further impetus for implementing PROMs, such as POS, in clinical care, and responding to identified issues within the domains of information needs, family anxiety, depression and breathlessness. It is ready to be further refined and tested, in order to improve patients’ and family caregivers’ outcomes in the most threatening times.

Links and resources

  • Van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ, EUROIMPACT. How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design. BMC Medicine 2015, 13:263 doi:10.1186/s12916-015-0449-6. Download a free copy of the article.
  • POS registration and full resources available here.
  • EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Download a free copy of the article.
  • Read earlier posts about EURO IMPACT on the EAPC Blog.

More about EURO IMPACT
EURO IMPACT – European Intersectorial and Multidisciplinary Palliative Care Research Training – is funded by the European Union Seventh Framework Programme (FP7/2007-2013, under grant agreement number (264697). EURO IMPACT aims to develop a multidisciplinary, multi-professional and intersectorial educational and research training framework for palliative care research in Europe. EURO IMPACT is coordinated by Prof. Luc Deliens and Prof. Lieve Van den Block of the End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium.

Other partners are VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands; King’s College London, Cicely Saunders Institute, London, Cicely Saunders International, London, and International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom; Norwegian University of Science and Technology, and EAPC Research Network, Trondheim, Norway; Regional Palliative Care Network, IRCCS AOU San Martino–IST, Genoa, and Cancer Research and Prevention Institute, Florence, Italy; EUGMS European Union Geriatric Medicine Society, Geneva, Switzerland; Springer Science and Business Media, Houten, the Netherlands.

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