‘Right patient’? Right time? Factors influencing the identification of who to and when to offer serious illness conversations.

We’re delighted to present this month’s ‘Editor’s Choice’ from Palliative Medicine, the official research journal of the EAPC. You can read the longer article in Palliative Medicine which EAPC members can access free from the EAPC website. Sofia Morberg Jämterud and Anna Sandgren asks what influences the timing and identification of patients for serious illness conversations?


Serious illness conversations give patients and their family members an opportunity to talk with their clinicians about wishes and priorities about their care.From previous research we know that this can decrease patients’ anxiety and increase their chances of receiving care that is in accordance with their wishes.1 But it can be difficult to identify which patients should be offered these conversations

In our recent article in Palliative Medicine we examine the question of identification, and more specifically, we explore healthcare professionals’ perceptions about factors influencing the identification process of patients for serious illness conversations. During the implementation of the Serious Illness Care Program2 at two hospitals in Sweden, we observed team meetings where identification was discussed, and we conducted semi-structured interviews with physicians and nurses. The data was collected at a broad range of clinics and did not include specialised palliative care units.

So what did we find? Identification of patients for serious illness conversations is a process influenced by a multitude of factors, such as the patients’ palliative care needs, continuity in patient–professional relations and continuity of staff. Identifying the ‘right’ patient (for example a patient with palliative care needs) and doing so at the ‘right time’ (for example, not too early nor too late in the illness trajectory) were seen as key aspects. Healthcare professionals also pointed out that serious illness conversations can be very emotional and challenging for both parties. Therefore, it is important to have established relationships and continuity in relations between a healthcare team and a patient as a starting point for identification. As one clinician stated: ‘But then, I’m also thinking that it’s important not to barge in. These kinds of conversations somehow require a relation.’

Serious illness conversations may often include the topic of death and dying, and this was considered to have a negative impact on the patient’s hope and since hope is of significance for survival, this becomes a real ethical obstacle. Thus, identification can involve existential and ethical concerns which may impact healthcare professionals’ willingness to identify patients and offer serious illness conversations. However, research has shown that if clinicians are trained to have these conversations, these conversations do not decrease the patients’ hope.3 But even so, the hesitation remains and it is important to take it seriously. Here it becomes clear that these conversations not only require skills in conversation methodology but that they also they touch upon profound human values. Palliative care is based on values such as a holistic view of the human being where care for existential concerns is integral to the meaning of ‘good care’. Furthermore, addressing these existential needs is considered to be an area of responsibility of care – as pointed to in an EAPC White Paper on multi-disciplinary education for spiritual care in palliative care.4 We suggest that it is crucial to address ethical and existential obstacles that can hinder healthcare professionals feeling able and confident to have these conversations. This may be particularly important in non-specialist palliative care contexts. We recognise that identifying patients for serious illness conversations can be challenging but doing so can improve care and experiences for individuals and their families and makes sure that care is in line with their wishes.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’

We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website. ‘Health care professionals’ perceptions of factors influencing the process of identifying patients for serious illness conversations: A qualitative study.’ Sofia Morberg Jämterud and Anna Sandgren. First Published: Palliative Medicine, Volume: 36 issue: 7, page(s): 1072-1079.

References

  1. Bernacki R, Paladino J, Neville BA, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med 2019; 179(6): 751–759.
  2. Bernacki R, Hutchings M, Vick J, et al. Development of the serious illness care program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015; 5(10): e009032.
  3. Thamcharoen N, Nissaisorakarn P, Cohen RA, et al. Serious illness conversations in advanced kidney disease: a mixed-methods implementation study. BMJ Support Palliat Care. Epub ahead of print 17 March 2021. DOI: 10.1136/bmjsp-care-2020-002830.
  4. Best M, Leget C, Goodhead A, et al. An EAPC white paper on multi-disciplinary education for spiritual care in palliative care. BMC Palliat Care 2020; 19(1): 1–10.

Links and resources

Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.

Follow Palliative Medicine on Twitter @palliativemedj

About the authors

Sofia Morberg Jämterud, PhD, is a postdoctoral researcher at Linköping University, and she was recently at Center for Collaborative Palliative Care at Linnaeus University, Sweden. She specialises in medical ethics and has written on issues such as dignity in the end of life and on the relation between vulnerability and autonomy in ethics of palliative care. Twitter: @MorbergSofia. ORCID no: 0000-0003-2998-3971.

Anna Sandgren, RN, PhD, is an Associate Professor at Linnaeus University and serves as the Director for the Center for Collaborative Palliative Care, Sweden.  Twitter: @AnnaSandgren70. ORCID no: 0000-0002-3155-575X.

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 for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free.


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

Palliative Care on Stage: Cicely Saunders and a world changing encounter.

There aren’t often plays about palliative care (though we think there should be!) so we are delighted to highlight a new production debuting at the Edinburgh Fringe Festival this month.  Sociologist and now playwright, Professor David Clark tells us about the play and the historic meeting upon which it is based.


Cicely Saunders and David Tasma.

When Ela Majer Tasma left Warsaw in June 1938, he had no idea how his perilous departure would influence the shape of things far into the future.  Leaving home and family to flee from the coming Nazi invasion, he went to Paris and then on to London. Throughout the war he eked out an existence as a waiter, adopting the name David, and working in a kosher restaurant in London’s West End.

When peace came, David looked forward to better times. Then illness intervened.

In summer 1947, he was seen in outpatients at St Thomas’s Hospital, by a newly qualified social worker, on her very first day in post. He had inoperable bowel cancer.

The encounter between David Tasma and Cicely Saunders holds an extraordinary place within the story of palliative care. When writing the full biography of Cicely I was intrigued to read through papers and archives relating to David, now safely stored at King’s College London. The modest remnants of his documented life give insights into his situation, but also leave much to the imagination.

We do know that Cicely saw David in outpatients and learned something of his story. When he was admitted to hospital in January 1948, she visited him over twenty times, until his death the following month. She sensed his pain over the loss of his family, his estrangement from the Jewish religion, his sense of a life that he considered worthless.

They spoke of many things and shared their personal stories. Cicely listened and tried to comfort him. His spiritual and emotional distress was palpable and seemed to over-ride any physical symptoms.

Cicely gave him a space to share his feelings and work through his sorrows. The busy surgical ward was not an ideal place for this. They talked of somewhere more home-like where people in his situation could be cared for at the end of life. It sparked an idea in Cicely that was realised some twenty years later.

I believe this is a story that is worth sharing.

It marks the start of a remarkable journey through which Cicely Saunders went on to establish St Christopher’s Hospice, which became a beacon of inspiration to so many around the world. It also reveals how a poor migrant, living on the margins of society and thinking his life would leave not even a ripple on the pond, could have such a lasting influence and be a force for real change in society.

In many ways, it is a story for our times.

Playwriting is new to me. But working closely with my dear friend and palliative care pioneer, Dr Jo Hockley, I have dramatized the story of Cicely and David and it will be brought to the Edinburgh Fringe this August for five performances.  Student actors, directors and production people, coordinated by Jo, will place the story of Cicely and David before a theatre-going audience for the first time.

We hope many other performances will follow, placing two remarkable people centre stage.

Links

To find out more and to book tickets for ‘Cicely and David’, click here.

About the author

David Clark founded the International Observatory on End-of-Life Care in 2003 and the Glasgow End of Life Studies in 2009. He has written widely on the history and global development of palliative care and is now Professor Emeritus of Medical Sociology at the University of Glasgow.  His more recent writings can be found here.  Twitter:@dumfriesshire.


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Posted in INTERVIEWS & TRIBUTES, The Arts in palliative care | Leave a comment

Top 20 most viewed blogs in 2021.

We are delighted to announce the top viewed blogs for 2021!   


eapc logo

In 2021, the EAPC blog had readers in 181 countries across the world and it had over 95,000 views. This fantastic achievement is only possible because of the generosity of the palliative care community, who are willing to write for the blog to share their research, clinical practice and opinions.  We also have a great Editorial Team, who peer review each blog, ensuring we publish high quality content.  We want to say a huge thank you to all our authors, Editorial Team… and to you, our readers, for making the EAPC blog such a trusted and informative resource.

We would also like to pay tribute to the hard work of Avril Jackson, who retired in January 2022.  Avril founded the blog in 2012 and she was instrumental in shaping it to what it is today – a blog internationally recognised for its diverse and topical content on palliative care. Thank you, Avril!

Without further ado, here are the 20 top viewed blogs from 2021, listed in alphabetical order. Click on the title to read more…

Ebun AbarshiUKMy experience of working in a hospice in the Covid 19 pandemic.

Maria Arantzamendi,  Alazne Belar Beitia and Carlos Centeno, Spain: Clinical aspects of palliative sedation in prospective studies : A systematic review.

Eduardo Bruera, US: Integrating early palliative care for patients with cancer: The evidence and the challenges.  

Dr Sabrina Bajwah, UK: A year of fighting the racial inequality of COVID.

Sophie Crawley, UK: Empowering better end-of-life dementia care: EMBED care programme. 

Tomasz Dzierżanowski, Poland, and Philip Larkin, Switzerland: New ESMO clinical practice guidelines on the care of the adult cancer patient at the end of life.

Minna Hökkä and Juho Lehto, Finland: Together towards better palliative care education for nurses and physicians: The Edupal Finland project.

Dr Gerrit Frerich: Winner of the Third Leadership Award 2021: Fellowship in Palliative Care.

Friederike Koehler, Marco Warth, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Beate Ditzen and Jens Kessler, Germany: Song of life : Music therapy at the end of life.

Mike Lucey, Ireland: Irish specialist palliative care team awarded Best European Paper of 2020.

Claire Morris: Leave no one behind: Equity in access to palliative care.

Lise Nottelmann, Denmark Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer.

Seamus O’Mahoney, Ireland: Is palliative care having an existential crisis? 

Heather Richardson and Libby Sallnow, UK: Fellowship programme goes online and unites palliative care pioneers from across the world.

Marisa Martín Roselló, Spain: Joan Hunt OBE Obituary: Pioneer of palliative care in Spain and founder of Cudeca, the country’s first hospice.

Leena Surakka and Minna M Peake, Finland: Integration of paramedic services into end of life care at home: From pilot trial to everyday practice.

Liliana Stănciulescu, Laura Iosub, Oana Predoiu, Romania: Research for all Palliative Care Clinicians (RESPACC): A new Erasmus+ project.

Aliki J Tserkezoglou, Greece: “Galilee” Palliative Care Centre: A Greek Palliative Care Story.

Robert Twycross, UK: Reflections to mark 50 years in palliative care: A trinity of patient care, education and training and research.

Max Watson, Ireland: European Certificate in Essential Palliative Care.

And if these have whetted your appetite, we have over 1100 blogs in our blog archive, categorised so you can search on areas which interest you most.

Congratulations to all authors for having the most viewed blogs for 2021! If you have a great idea for a blog, and like the idea of being one of our top authors for 2022, do email Catherine, our Blog Editor, here.


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Posted in Top Ten Most-Viewed Posts 2021 | Tagged | Leave a comment

Supporting the bereaved is everyone’s business.

For the penultimate blog in our Palliative Care and Public Health series, Samar Aoun asks what do we know about bereavement as it is lived out in everyday life?


Professor Samar Aoun

Until fairly recently, we knew about the minority who sought support from professional services but not about the majority who did not seek such services, and therefore we paid less attention to the experience and resources the majority used to learn to live with their loss. Even mourning, which traditionally had been managed by shared social rituals, became regulated through interventions with professionals.

In 2015, we developed a Public Health Model for Bereavement Support (Figure 1), with a three-tiered approach which challenged some of this ‘received wisdom’ in the field and exposed the limitations of clinical services and validated community-based approaches to bereavement support (1). The population-based survey underpinning the model showed that, for most people, the bulk of the support that is effective comes from their informal networks, and that many have an ambivalent response to the professional support offered. The research we published in 2018 showed that the sources of informal support were most used by the bereaved and deemed most helpful because of the emotional bonds (attachment), the practical assistance (tangible alliance) and the perceived sense of belonging (social integration) (2).

The clear inference is that professional services need to work collaboratively in support of these informal networks if their contribution is to be appropriate and effective. Therefore, I can share some key learnings to ensure that families receive the support they need after a bereavement.

  • The community needs to own its central role in end of life and bereavement care, with formal professionals advising, supporting and contributing as required.
  • We need to support the ‘everyday assets’ in the community who care for the bereaved and who are already involved in the everyday lives of those who were caring and recently bereaved. These assets are family, friends, neighbours, work colleagues and funeral providers to name a few.
  • Formal professionals may focus on emotional support, not understanding that emotional support is largely in place, and what clients need is strategic support to help them negotiate their changed world, not merely to adjust their emotions.
  • Formal professionals need to remember that they are being consulted not to deal with grief as a separate event, but as one aspect of a tangible, multi-dimensional loss with which that bereaved person has to live.

In summary, informal bereavement support is the “bedrock” with formal services supplementing this support.

Even during the COVID-19 pandemic, public health strategies like Compassionate Communities retained their value and developed new approaches when face-to-face encounters were minimal and physical means for support were limited. Somewhat paradoxically, the loss of opportunities to say farewell itself became a different source of social connection as people posted their accounts on social media and supported each other in sharing their wishes about what might have been (3). Therefore, many of the projections of increased complicated grief may over-estimate the importance of professional support, and correspondingly under-estimate what family, friends and neighbours can provide.

Overall, empirical indicators and directions encourage a Compassionate Community approach to future bereavement support practice and policy, and these findings are now influencing practice and policy in several countries (Figure 1). The task for both formal and informal services is to be alert to the operational narrative of a family or social network and to support them, if needs be, to expand or enrich that narrative. This can be undertaken by enhancing a social network in a Compassionate Community model of care, by introducing additional members who can offer different perspectives and approaches. Improving grief literacy, in terms of skills and knowledge to support the bereaved, is vital for informal networks to be effective: recognising grief, knowing how to find quality information, being cognisant of warning signs of more complex matters, careful listening that supports comments and questions with the potential to broaden perspective, knowing how to ask questions in a sensitive manner and how to help the bereaved find resources.

With COVID-19’s sharp focus on death, dying, loss and grief, there is an opportunity to improve death literacy within the community enabling more preparedness and ability to die at home, if it is in line with people’s wishes, and also to improve grief literacy, meaning supporting better community understanding, recognition of grief and help-seeking to support the bereaved.

Figure 1: Translation of the Public Health Model for Bereavement Support into practice and policy.

References

1.Aoun SM, Breen L, Howting D, Rumbold B, McNamara B, Hegney D (2015). Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One; 10(3): e0121101.

2.Aoun SM. Breen LJ, White I, Rumbold B, Kellehear A. (2018). What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the Compassionate Communities approach. Palliative Medicine 32(8) 1378–1388 DOI: 10.1177/0269216318774995

3.Lowe J, Rumbold B, Aoun SM (2020). Memorialisation during COVID-19: implications for the bereaved, service providers and policy makers. Palliative Care and Social Practice. DOI: 10.1177/ 2632352420980456

Links and resources

  • Find out more about the EAPC Reference Group on Public Health and Palliative Care.
  • Read more about Public Health and Palliative Care on the EAPC blog.
  • The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
  • The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.

About the author

Professor Samar Aoun is Perron Institute Research Chair in Palliative Care at the University of Western Australia and Perron Institute and Adjunct Professor, La Trobe University.  She is also Chair of the South West Compassionate Communities Network. Orcid no: 0000-0002-4073-4805.


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Posted in BEREAVEMENT, public health palliative care | Tagged | Leave a comment

‘Luck Is What Happens When Preparation Meets Opportunity’: experiences of blended learning workshops from the RESPACC project.

RESPACC – ‘Research for Palliative Care Clinicians’ – is an European Union Erasmus + project that aims to encourage basic research competences in the day-to-day practice of palliative care clinicians. Dimitra Foteinopoulou & Professor Sheila Payne tell us more about how RESPACC rose to the educational challenges presented by the pandemic.


In the context of post-pandemic uncertainty about travel and social restrictions, carrying out an Erasmus + project and developing educational activities was challenging. The RESPACC team needed to adapt quickly and developed blended learning workshops in Europe to deliver training of clinicians on palliative care research methods. Blended online and face-to-face training for groups of up to fifty participants allowed effective, real-time interaction among participants and the speakers, regardless of the format of attendance. As this may become the ‘new normal’ globally, we wanted to share what we have learnt.

Interactive teaching is a cornerstone of Palliative Care education. Online courses in the pandemic era have posed problems in not enabling the face-to-face interaction of participants. Online platforms with break out room sessions have tried to facilitate small group discussions while allowing participants all over the world to have access to real time synchronous education and interaction with peers. However, in the emerging post Covid era, participants and organisers would most likely want to maintain the advantages of remote online participation in training, while at the same time enjoy the benefits of face-to-face interaction. Thus, the need for blended, hybrid courses emerged. We found that establishing them depends on in-house resources available and creates new challenges, and opportunities for palliative care education.

A hybrid course is a mixture of on-site and online meeting which unites participants, speakers at the venue with remote participants and sometimes speakers. Participants can choose whether to attend in person or online.

Galilee Palliative Care Centre organised a hybrid three-day training event in May 2022, on ‘Introducing palliative care clinicians to critical reading and academic writing’, as part of the RESPACC project. Galilee’s IT Administration team sole aspiration was to give both online and on-site participants the same experience and additional value. Both audiences would be able to contribute to the meeting, respond to polls during the event, ask questions directly to the presenters, work in groups, present results and fully engage in the training.

Organisation and Technical Equipment: Galilee’s team organisation started preparations almost two weeks beforehand, since it was the first time that the team had run a joint on-site and online event. The budget, people and technical resources were planned carefully to minimise unwanted ‘surprises’: four people and equipment, including two cameras (with all the relevant technical support), a sound mixer and a camera mixer. These resources included back-ups in case of emergency. A rehearsal took place the day before the official event launch to enable the team to check all connections, event layout, lighting, presentations, sound etc. Each person in the IT Administration team had a clearly defined role during the meeting (one responsible for the cameras and sound, one responsible for the online participants, one for the on-site participants/speakers and one coordinator/director).

Feedback: First impressions from participants in the room were positive, ‘Good organisation, High quality session’, ‘Good atmosphere’, ‘Excellent material’, ‘It was very professional’. No-one mentioned that the blended event negatively interfered with their educational experience. Online participants evaluated the experience as ‘The organization was amazing. I did not expect I would be included as much as the participants in the room’. Most importantly, everybody shared pure enthusiasm to improve their research expertise after the hands-on experience offered during the training: ‘I will start a Journal Club’, ‘I will write an article and a poster’.  Presenters expressed their satisfaction regarding the interaction between online and on-site audiences and could easily engage participants in the training.

Future adjustments: presenters may consider visiting the breakout rooms to clarify issues on the working assignment. Moreover, the use of the whiteboard tool may further facilitate sharing ideas and creating a joint project online.

Somebody may say it was beginner’s luck, but Galilee’s organisation and real time agile management were the key to good administration and better use of the in-house resources. As the Roman philosopher Seneka said, “Luck Is What Happens When Preparation Meets Opportunity”.

All this celebration is due to the inspiration, very hard work and preparation, by the managerial team of Galilee: Aliki Tserkezoglou (Head of Galilee), Mary Dionisi (Head of Administration), Nikolaos Schalekis (IT responsible), Dimitris Spyratos (Cameras & Sound Responsible) and Oana Predoiu RESPACC Project Manager from HOSPICE Casa Sperantei. Thank you all.

The “Research for Palliative Care Clinicians” RESPACC program (Ref. 2020-1-RO01-KA202-080128) is funded through Erasmus+ Programme, Key Action 2 (Strategic Partnerships- Vocational Education and Training) as a joint venture of the following Institutions: Hospice Casa Sperantei, Romania (Coordinator); European Association of Palliative Care, Belgium; University of Navarra, Spain; Transilvania University of Brasov Romania and Galilee Palliative Care Centre, Greece.

Links

  • Find out more information about RESPACC here.
  • Read other EAPC blogs about RESPACC here.

About the authors

Dimitra Foteinopoulou holds a BSc (Hons) in Biology and an MSc (Distinction) in Management, currently working as an Administration employee in Galilee Palliative Care Centre, Greece.

Sheila Payne is Emeritus Professor at the International Observatory on End of Life Care, Lancaster University, United Kingdom (UK). Twitter: @SheilaPayne1 ORCID: 0000-0001-6982-9181.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

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  • Submit your abstract now! Closing date 15th October 2022 for abstract submissions. Find out more here or submit your Abstract here.
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Posted in EAPC COLLABORATIVE PROJECTS, EDUCATION & TRAINING, RESPACC | Tagged | Leave a comment