Is palliative care having an existential crisis?

NEW SERIES: EXPLORING NEW DIMENSIONS AT #EAPC2021 …

There are just 106 days to the 17th World Congress Online of the European Association for Palliative Care (EAPC). With live sessions on 6 to 8 October, and lots of on-demand content before and after the congress.

Ahead of the congress, we’re delighted to give some highlights of what to expect at #EAPC2021. Today, Dr Seamus O’Mahony, gives a glimpse of the plenary lecture he will give.


Dr Seamus O’Mahony.

I was invited to give this lecture by a circuitous route. Two years ago, I wrote a (mildly) critical review for the Lancet of the palliative care physician Kathryn Mannix’s best-selling book With the End in Mind. I argued that the reality of palliative medicine was not as rosy as Mannix portrays, that it might suffer from “chronic niceness”, a form of emotional dissonance first described by the hospital chaplain Peter Speck. My friend Richard Smith, (former editor of the BMJ, chairman of the Lancet commission on “The Value of Death”), emailed me about this review; I suggested to him that palliative care might be undergoing “an existential crisis”. Richard then wrote a blog for the BMJ posing this question and invited commentary from Ros Taylor and Libby Sallnow (both palliative care doctors), and Lucy Selman, a researcher in end-of-life care. Although my only contribution was a long quote from my Lancet review, I was included as a co-author. In an amusingly post-modern twist, one of my co-authors described my comments as “puzzling” and “patronising”.

The blog attracted some attention – not all of it complimentary. Richard was invited by the EAPC to give a plenary lecture with this title at their annual congress in Helsinki in October 2020. He had decided a couple of years before to give up flying, so declined the invitation, but suggested that I might give it. I accepted – this was all pre-Covid. The meeting was cancelled, and rescheduled for 2021 as a virtual event, so Richard could have given it after all.

I should mention something of my background. I worked for many years in both the UK and Ireland as a gastroenterologist and general physician, retiring just before Covid in 2020. I now work for the Irish vaccine program. My book The Way We Die Now (2016) was written from the perspective of a doctor working in an acute general hospital (where most deaths in the UK and Ireland take place) and questioned palliative care’s “ownership” of death. But I’m well-disposed to palliative medicine: I’m giving this talk as a friend.

Important questions for the future of palliative care…

The word “crisis” is perhaps too emotive, but palliative medicine is at a crossroads. My talk will address what I think are the important questions for its future. Given that it cannot possibly take on all death and dying, how can palliative care positively influence the rest of medicine? Why does research on end-of-life care attract so little funding, and why are there so few academic palliative care doctors?  Hospices (particularly in the UK) are struggling financially: what should be their role? Should hospices be places providing “de-luxe dying” for the few, or should they be a resource for the many? Is palliative care contributing to the “professionalisation” of dying and, if so, how can we empower individuals, families, and communities? Should palliative care concentrate on symptom relief only, or should its mission also be spiritual and communitarian?

I can’t pretend that I have the answers to all these questions, but I’ll do my best.


Join Seamus O’Mahony for his plenary presentation, which will be one of the interactive online sessions at the EAPC 17th World Congress from 6 to 8 October 2021.

Dr O’Mahony’s lecture, Is palliative care having an existential crisis?, will also be recorded and released for on-demand viewing by registered delegates until January 2022. Read the abstract of his lecture, and all other congress presentations and posters, in the Book of Abstracts for the 17th EAPC World Congress, to be published by ‘Palliative Medicine’ in the autumn.

  • Register for the EAPC 17th World Congress Online here. (Special discount for EAPC members).
  • Read the special series about the EAPC 17TH World Congress on the EAPC blog.
  • Read more about Seamus O’Mahony, his publications and other resources here.
Posted in 17th EAPC World Congress, EAPC World Congresses | Tagged , | Leave a comment

“Song of Life” – Music therapy at the end of life

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM ‘PALLIATIVE MEDICINE’, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC

Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’.


Top row, clockwise: Friederike Koehler, Marco Warth, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Jens Kessler and Beate Ditzen.

Friederike Koehler, Marco Warth, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Beate Ditzen and Jens Kessler explain the background to their longer article selected as ‘Editor’s Choice’ in the June 2021 issue of ‘Palliative Medicine’. And it’s Open Access…   

“This is the song that my grandmother used to sing to me

when I could not fall asleep as a child…”

Patients at the end of life tend to review their lives recalling important relationships, events and phases of life. Indeed, psychosocial interventions in palliative care often work with life reviews and/or creating legacies, such as an interview transcript. Research on these techniques commonly shows beneficial effects on the patients’ quality of life and spiritual wellbeing. Since music is often deeply tied to certain memories, it may be an additional tool to support patients to come to terms with their own biography at the end of life. However, no study has yet investigated biographical music therapy, which inspired us to develop an innovative music therapy intervention for palliative care patients (“Song of Life”) that is based on a biographically meaningful song.

Consisting of three sessions, the first session contains an interview with the music therapist to identify and explore this song. In the second session, the music therapist plays the song live to the patient, which is audio recorded. The music therapist hands over the audio recording in the third session and guides the patient to reflect on the feelings and thoughts in the experience.

To evaluate the effects of this music therapy technique, we conducted a study with 104 patients on two palliative care units in Germany who participated either in three sessions of music therapy or relaxation exercises. Before and after each intervention, participants assessed their psychological and global quality of life, spiritual wellbeing, ego-integrity (a sense of acceptance and wholeness), and momentary distress. Additionally, both patients and their families rated their satisfaction with the treatment. Results of the data analysis showed no differences between the two interventions regarding psychological and global quality life. However, participants in “Song of Life” reported higher spiritual wellbeing and ego-integrity as well as lower distress compared to participants in the relaxation group. Further, both patients in music therapy and their family members were more satisfied with the treatment than patients and family members in the relaxation group. Numerous music therapy participants told us they were enormously touched by the interest and effort of the music therapist in their own life story and that the intervention was meaningful and important to them.

As the first study on biographical music therapy in palliative care, our findings add to the supply of psychosocial interventions with terminally ill patients. Especially regarding spiritual needs, biographical music therapy might facilitate an emotional processing and integration of life experiences. Practitioners and clinicians in palliative care might identify patients that are particularly afflicted with a loss of meaning and purpose in life and offer this type of music therapy as a resource to regain a sense of coherence and acceptance. As “Song of Life” also showed beneficial effects on distress, it may also provide a momentary relief of burden.

Future research might explore longer-term effects of biographical music therapy and the influence of individual characteristics, such as sex or cultural background.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, “Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care by Marco Warth, Friederike Koehler, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Beate Ditzen and Jens Kessler, published in Palliative Medicine Volume 35 issue: 6, page(s): 1126–1136. https://doi.org/10.1177/02692163211010394 (Open access).

More about the authors…
Marco Warth
, a post-doctoral researcher, Friederike Koehler, a doctoral researcher and Beate Ditzen, a professor and director, work at the Institute of Medical Psychology, Center for Psychosocial Medicine, Heidelberg University Hospital, Heidelberg, Germany. Martin Brehmen, a psychologist, and Martin Weber, a professor and chief physician, work at the Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany. Jens Kessler, a senior physician and post-doctoral researcher, and Hubert J. Bardenheuer, work at the Centre of Pain Therapy and Palliative Care Medicine, Department of Anesthesiology, Heidelberg University Hospital, Heidelberg, Germany.

Links

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 Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles.

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

  • Individual members join or renew membership here.
  • Associate Members– all current members of our National Associations are invited to join the EAPC or renew their membership for FREE. Click here.

EXPLORE NEW DIMENSIONS at #EAPC2021. The 17th EAPC World Congress Online offers interactive online sessions from 6 to 8 October 2021, including an entire day dedicated to Paediatric Palliative Care. And you will be able to enjoy lots of on-demand content before and after the congress dates.

  • Register for the congress here. (Special discount for EAPC members).
  • Enter the International Photo Competition here.  
Posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, The Arts in palliative care | Tagged , | 1 Comment

Pointers to promoting a palliative care project using MyPal as an example

Over the past year, we’ve published several posts that describe how MyPal aims to improve communication between adults, children and young people using digital technology. But, as with many palliative care projects which often have different audiences and messages to convey, how do you achieve that? Gill Macdonald, Communications Manager for MyPal partner organisation, the International Children’s Palliative Care Network (ICPCN), explains how they developed a communications plan to promote a project such as MyPal.


Gill Macdonald.

Being new to the world of international palliative care, I wondered how best to approach this blog. Would my relative freshness to the role hinder my insights into an international palliative care project?

However, putting together a communications plan is a bit like a jigsaw. You have all your pieces, and you need to sort the edges from the middle section at the start so you can end up with a complete picture. Whether this is an image of a gondola in Venice or elephants on the African plain, you use the same planned and thought-out method to get there.

MyPal is a European Union-Funded project that aspires to empower people with cancer, living with palliative care needs, and their caregivers. The purpose is to capture their symptoms, communicate them in an effective way to their healthcare team and therefore ultimately improve their Quality of Life (QoL). MyPal uses innovative digital technology to do this through apps for the adults and games for the children and young people.

Image from the child study app. 

The apps and the game, which is set in a beautiful underwater world, improve communication between the patients and/or parents by reporting real-time changes in their condition directly to their health professionals. They incorporate electronic Patient Reported Outcome Measures (ePROs), where children and young people report changes in their symptoms and conditions.(1)

The study is still ongoing, and no results have yet been collated, but as part of the communications plan, steps have been put in place from the start of the project to disseminate the results by the ICPCN, the European Association for Palliative Care and Lancaster University. A bit like laying out the edges and the middle parts of your jigsaw right at the beginning.

In communicating outcomes for palliative care projects, such as MyPal. there are a myriad of audiences and messages so the content must be customised for each. It is not a one-size-fits-all approach.

The channels chosen by the MyPal consortium for dissemination are Facebook, Twitter and ResearchGate. Each platform has its own strengths for talking to different audience groups, with Twitter taking the lead because when using it we can communicate with a wide variety of different groups, organisations and individuals, aiming for immediate, real-time engagement. Next comes ResearchGate which focuses on academic and clinical researchers working in the fields of digital health, cancer and palliative care, and provides a central location for published papers funded by the project. Last comes Facebook, which is principally focused on engaging with patient groups and healthcare professionals.

To conclude, the key to successful promotion is knowing your audience segmentation, planning and researching key platforms, using language that will connect with your audience, monitoring and evaluating your performance as you go along, and not being afraid to adapt your plans should you need to, to increase your reach.

References

  1. Meyerheim M, Karamanidou C, Payne S et al. MyPal-Child study protocol: an observational prospective clinical feasibility study of the MuPal ePRO-based early palliative care digital system in paediatric oncology patients. BMJ Open 2021;11:e04526 https://bmjopen.bmj.com/content/bmjopen/11/4/e045226.full.pdf

Links

More about the author…
Gill Macdonald works jointly for two key global palliative care organisations: International Children’s Palliative Care Network (ICPCN) and the Worldwide Hospice Palliative Care Alliance (WHPCA).  Contact Gill by email: communications@icpcn.org
Professor Julia Downing is the Chief Executive of the International Children’s Palliative Care Network (ICPCN) Contact Julia by email: julia.downing@icpcn.org


EXPLORE NEW DIMENSIONS at #EAPC2021. The 17th EAPC World Congress Online offers interactive online sessions from 6 to 8 October 2021, including an entire day dedicated to Paediatric Palliative Care. And you will be able to enjoy lots of on-demand content before and after the congress dates.

  • Register for the congress here.
  • Enter the International Photo Competition here 

 

 

 

 

 

Posted in EAPC COLLABORATIVE PROJECTS, MyPal Consortium, PATIENT & FAMILY CARE | Tagged | Leave a comment

#EAPC2021 Science Slam – Exploring new ways of communicating your palliative care project

NEW SERIES: EXPLORING NEW DIMENSIONS AT #EAPC2021 …

THERE ARE JUST 114 DAYS TO THE EAPC 17TH WORLD CONGRESS ONLINE WITH LIVE SESSIONS ON 6 TO 8 OCTOBER, AND LOTS OF ON-DEMAND CONTENT AVAILABLE BEFORE AND AFTER THE CONGRESS.

Elodie Cretin is Director of the Plateforme nationale pour la recherche sur la fin de vie (French National Platform for End-of-Life Research), and she’s also a member of the Scientific Committee for the 17th EAPC World Congress Online. Here, she explains what you can expect if you take part in this year’s Science Slam – fun and a lot of learning…


Élodie Cretin.

The Science Slam has become a fun and focal part of European Association for Palliative Care annual congresses and we’re delighted to be hosting our third event at this year’s World Congress Online, 6 to 8 October. So what’s so special about a Science Slam? For a start, it’s a unique chance for you to present the key messages of your project to the audience in a way that’s both lighthearted, yet understandable to everyone. Although research is the focus, the scientific value of the lecture plays a more subordinate role. The Science Slam is all about reaching the hearts and minds of the audience by making a serious topic entertaining.

The audience is both judge and jury and chooses the winner. And this jury does not expect dry, boring lectures. On the contrary: think sparkling, funny, surprising, yet well-founded research. So go easy on the scientific and technical language and keep it fun and simple! And please – no PowerPoint presentations – just yourself and what you’re wearing or carrying, for example juggling balls to portray neurological disorders.

Why take part?

Scott Murray and Berend Feddersen, contestants at the EAPC Science Slam at the 2020 EAPC World Research Congress Online, both agree that a Science Slam makes an important contribution to science communication.

The Science Slam is a great opportunity to enthusiastically present the core message of your research in a way that may interest groups we do not even think of reaching! So, I play golf…  I presented a message for golfers: Dying might be like playing your final hole at golf, whether it is a short, medium length or long one, illustrating some of the different hazards on the way. I called it Let’s go golfing’. Great if anyone is up for other sporting, musical or theatrical analogies!”

Prof Scott Murray, Edinburgh, Scotland, UK.

“Participating in a science slam is just wonderful. This offers the unique opportunity to understand teaching or research content.  Only when we manage to explain complex topics simply, we have understood them in depth. In this way, we might not only give the audience an ‘aha’ effect, but also ourselves. I can only recommend everyone to use this chance: it is fun, instructive, and a great experience. Just go for it ­…The effect will be long-lasting, for your audience and you!”

Prof Dr Berend Feddersen, Munich, Germany.

The Science Slam format is especially suitable if you want to present a new project. You get the chance to explain individual aspects or fundamentals of your project and the audience will literally experience science as it unfolds. Taking part in the Science Slam can also be a first step or ‘rehearsal’ to presenting at a future EAPC congress – try it out, build up your confidence and then submit an abstract for an oral presentation next year! To encourage newcomers, we are opening the Science Slam to non-registered congress delegates. However, if you are not registered you will only be allowed access to the live performance on 7 October, and only if your presentation is among the top three highest-rated entries.

How to take part

If you want to be part of the fun, you can find more information on the Science Slam webpage.  Prof Dr Berend Feddersen has kindly prepared a tutorial (see above) with some ‘tips and tricks’ to get you started. Then, upload your own three-minute-video presentation and your contact details.

Fine-tune your skills at our webinars in August

If you need more assistance, the EAPC offers two webinars with Berend Feddersen and Elodie Cretin:

  • 17 August 2021 at 2pm-5pm. Personal teaching session 1 – Aim: Find your topic, reflections on first ideas of presentation, tailoring your presentation style, sharpening the question: What do I want to say and why it is important for me?
  • 15 September 2021, 2pm-5pm. Personal teaching session 2 – Aim: Discussion of first video examples, final work on details like facial expression, timing and using of additional material/props.

The audience will judge your video based on: Did I have fun? Did I learn something? The presenters of the three highest-rated performances will be asked to take part in the live Science Slam on the evening of  Thursday, 7 October with the chance to win a great prize. And the overall winner will be invited to talk about their project on the EAPC blog.

Please think about entering this year’s Science Slam. You’ll be surprised at how much fun it is, and you might win a prize…


Links

  • Find out more about the Science Slam here.
  • Please email Mrs Élodie Cretin if you have any questions about the Science Slam.
  • Read more posts about the 17th EAPC World Congress on the EAPC blog.
  • EXPLORE NEW DIMENSIONS at #EAPC2021. The 17th EAPC World Congress Online offers interactive online sessions from 6 to 8 October 2021, including an entire day dedicated to Paediatric Palliative Care. And you will be able to enjoy lots of on-demand content before and after the congress dates.
  • Register for the congress here.
  • Enter the International Photo Competition here 

 

 

Posted in 17th EAPC World Congress, EAPC World Congresses | Tagged , | Leave a comment

What are you doing about the wish to hasten death? Complete our survey and share your clinical experience  

Cristina Monforte-Royo and Denise Pergolizzi write on behalf of the EAPC Task Force on Wish to Hasten Death in Patients with Life-threatening Illnesses. They invite you to share your clinical experience concerning the wish to hasten death to guide palliative care towards recommended standards that can be used in clinical practice for this difficult subject. 


Cristina Monforte-Royo (left) and Denise Pergolizzi.

Back in 2019, a European Association for Palliative Care (EAPC) task force was initiated to address the changing landscape around the wish to hasten death (WTHD) in Europe. In order to meet one of its objectives, the task force, entitled ‘Wish to Hasten Death (WTHD) in Patients with Life-threatening Illnesses: A clinical issue’, would like to hear your views via our online survey. It will take eight to ten minutes to complete.  We are aiming to gain a better understanding of clinical experience and current perspectives and responses among palliative care professionals across Europe on the WTHD. (Read the definition of the WTHD here). This important phenomenon affects patients actively dying from advanced illnesses who feel there is no other way to relieve their suffering. It is also a complex phenomenon that can take on different meanings to different patients, varying in how it is expressed by patients and interpreted by professionals.

It’s been ten years since a review of 282 clinical studies about patients with advanced illnesses and their expressions of the WTHD was published.[1] At the time, various lessons were learnt from the literature. It was clear that there were multiple causes that could be attributed to the WTHD, with an emphasis on psychosocial issues and not just physical sources. There was also evidence that, with time, patients can change their minds about their choices. Nevertheless, as a concept there was a lack of definition as to whether recognition was being given to general thoughts of a WTHD as opposed to actual desires and/or intentions to hasten death. And, in particular, there was scant information on how to respond.

Fast forward ten years and the public and political dialogue is rapidly changing across Europe around the WTHD. This can affect how patients express, and how we deal with, the WTHD. With more research, we have seen advances in our understanding of the WTHD in local and cultural contexts.

For instance, specialist palliative care professionals at four German university hospitals reported that they did not want to address thoughts about death and dying with patients, given assumptions it was emotionally burdensome and would be considered harmful to the patient.[2] Meanwhile, in a study of palliative care patients in a public hospital in Spain, 87 per cent of patients considered that discussions about the WTHD were not bothersome.[3]

Share your clinical experience with the wish to hasten death – complete the survey 

This discrepancy between professional and patient perspectives, at least at these local levels, underscores an important question: what is happening in clinical practice across Europe? We want, and need to know, the clinical experience of healthcare professionals working in palliative care on the issue of the WTHD.  We are particularly interested to know how this is assessed, if there is awareness of the many causes that precede a WTHD and, most importantly, whether healthcare professionals feel prepared and able to respond to its expression. With this information, we hope to develop guidelines and recommended standards for clinical practice to guide those working in palliative care to address this challenging topic. We are grateful to any, and all, palliative care professionals for their time and contribution to this important survey, which can be accessed at:

https://es.surveymonkey.com/r/2WW7PTM (English version)

https://es.surveymonkey.com/r/2WJQF8Y (versión Castellano)

References 

  1. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death : a review of clinical studies. Psychooncology. 2011;804:795–804. doi: 10.1371/journal.pone.0146184.
  2. Galushko M, Frerich G, Perrar KM, Golla H, Radbruch L, Nauck F, Ostgathe C, Voltz R. Desire for hastened death : how do professionals in specialized palliative care react ? 2016;543:536–43. doi: 10.1002/pon.3959.
  3. Crespo I, Monforte-Royo C, Balaguer A, Pergolizzi D, Cruz-Sequeiros C, Luque-Blanco A, Porta-Sales J. Screening for the Desire to Die in the First Palliative Care Encounter: A Proof-of-Concept Study. J Palliat Med. 2020 Sep 18. doi:10.1089/jpm.2020.0276. Epub ahead of print. PMID: 32945714.

Links 

More about the authors… 

Cristina Monforte-Royo is a nurse researcher, Dean of the Nursing Department at the Universitat Internacional de Catalunya and Director of the WeCare Chair. Contact Cristina by email cmonforte@uic.es

Denise Pergolizzi is a psychologist and a researcher with the WeCare Chair at the Universitat Internacional de Catalunya. Contact Denise by email dpergolizzi@uic.es

 

Posted in EAPC Task Forces/Reference Groups | Tagged | Leave a comment