Caring precariously: Palliative care and welfare worker perspectives on end of life carers


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’.  

Today, Kristin Bindley, (Faculty of Health, The University of Technology Sydney, Australia) gives the background to the longer article authored with Joanne Lewis, Joanne Travaglia and Michelle DiGiacomo, which was selected as ‘Editor’s Choice’ in the January issue of ‘Palliative Medicine’. 

We were delighted that our article ‘Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare’ was chosen as ‘Editor’s Choice’ for the January issue of Palliative Medicine.

Kristin Bindley with her co-authors and PhD supervision team. Top row, clockwise: Michelle DiGiacomo, Kristin Bindley, Joanne Lewis and Joanne Travaglia.

This paper reports findings from my PhD research, which arose from my immersion in clinical practice as a social worker and bereavement counsellor in Western Sydney; an area of recognised relative socioeconomic disadvantage. During over a decade of providing bereavement counselling and support for families, I frequently observed bereaved carers negotiating income support and housing following the death of someone with a life-limiting illness for whom they cared. These concerns heightened distress in bereavement for many, and often amplified existing physical and mental health issues.

Such was the impetus for the commencement of my PhD study and scoping review of social and structural inequity in bereavement (Bindley et al, 2019). The review identified very limited work in this domain. While research in palliative care and bereavement has often focused on complex grief as a diagnosable disorder, findings of the review suggested that bereavement is both psychologically and socially complicated. Experiences of disadvantage in bereavement appear to accumulate for carers already positioned as vulnerable, and can be related to pre-existing financial strain associated with caring at end-of-life.

It is recognised that income support benefits may be associated with hardship for end of life carers. Yet, carer interactions with social welfare policy and public institutions have been underexplored at end-of-life. We sought to explore how palliative care and welfare sector workers perceive and approach the needs of carers of people with life-limiting illnesses who receive government income support or housing assistance in Western Sydney. Workers reported that financial and housing precariousness were amplified for carers by features of policy and administration, especially for carers who were vulnerable due to lower levels of literacy, being of non-English speaking background, social isolation and negative past experiences of public institutions. Time-consuming application processes, delays, and inconsistent practices alongside increasingly disconnected health and welfare organisations were viewed to contribute to poor outcomes for carers.

Structural burden, or the stress arising from navigating fragmented and complicated health and social care systems (Funk et al, 2019), appears to contribute to inequity for carers. Our findings support the need for a shift from an individual approach, focussed purely on educating or equipping individual carers to navigate systems, to structural strategies that involve tailoring income support benefits to the unique circumstances facing carers at end-of-life. This also includes considering ways in which different sectors can work more collaboratively to promote better outcomes for particularly vulnerable carers. One palliative care worker suggested this necessitates welfare and health workers better understanding “the coalface” of each other’s work.

The next phase of this research reports on findings of in-depth interviews with bereaved carers from the same region. Our intention is to communicate the commentary from both cohorts of workers and carers to improve the experience of carers as they navigate social welfare needs.


Bindley K, Lewis J, Travaglia J, and DiGiacomo M. Disadvantaged and disenfranchised in bereavement: a scoping review of social and structural inequity following expected death. Soc Sci Med 2019; 242: 112599.

Funk LM, Dansereau L and Novek S. Carers as system navigators: exploring sources, processes and outcomes of structural burden. Gerontologist 2019; 59(3): 426–435.

Links and resources

This post relates to the longer article, ‘Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare’ by Kristin Bindley, Joanne Lewis, Joanne Travaglia, Michelle DiGiacomo, published in Palliative Medicine Volume: 35 issue: 1, page(s): 169-178. Article first published online: October 28, 2020; Issue published: January 1, 2021.

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

Follow Palliative Medicine on Twitter @palliativemedj   

Access to Palliative Medicine ‘Editor’s Choice’ journal articles for EAPC members
We apologise for the disruption, but some areas of the EAPC website ( are currently inaccessible as we migrate content to a new website. Unfortunately, this currently includes some of the full-text journal articles selected as ‘Editor’s Choice’. We will re-establish links to all our publications as soon as possible. If you are a member of the EAPC and need urgent access to the journal article to which this blog post relates, please email us at with the title and authors and we will send you a PDF. (This opportunity is available only to EAPC members). Thank you for your patience and understanding.

JOIN US AT THE 17 TH EAPC WORLD CONGRESS ONLINE  – interactive online sessions 6 to 8 October 2021. Submit your Abstracts until 14th February. Apply for EAPC Researcher Awards.

Posted in BEREAVEMENT, Carers, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Tagged , | Leave a comment

Paving the way for the next steps – EAPC Task Force on International Collaboration for the Development of Healthcare Professional Guidelines in Palliative Care  

Anneleen Janssen, Research Coordinator at Federatie Palliatieve Zorg, Vlaanderen, Belgium (a Belgian national palliative care association), and a member of the EAPC Task Force on International Collaboration for the Development of Healthcare Professional Guidelines in Palliative Care.  

Remember Peter Pype’s earlier post on the blog when he invited you to join us at our task force’s open meeting at the 11th European Association for Palliative Care World Research Congress Online?  Well, we succeeded in getting 69 attendees – more than during previous congresses and we had a very inspiring and constructive debate with an enthusiastic audience. The purpose of this meeting was to explain the preparations to build a collaborative network concerning guideline development. We presented and discussed the results of the questionnaire from EAPC-affiliated countries about the methodology of guideline development and the results of a tryout of international collaboration of guideline development.

The way is paved for the next steps …    

Why a collaborative network? 

Palliative care is a rapidly growing scientific field with an increasing body of evidence. Guideline development is needed to support qualitative care practices, but it is complex and rather time consuming.

Our research shows that many countries in the EAPC region are developing guidelines based on the same body of international scientific evidence and using similar methodologies. It appears feasible and worthwhile to strive for a collaborative network, to diminish individual efforts and develop guidelines in a more efficient way. This network would enable drafting shared international key recommendations (phase 1), for subsequent translation to national contexts (phase 2).

Guideline development comprises two main phases:

  • Phase 1 encompasses literature search, selection, evidence table, key recommendation 
    • international collaboration appears possible
    • shared approach can divide workload and save time.
  • Phase 2 encompasses context adaptation of key recommendations, local peer review and publication 
    • international collaboration not feasible
    • national approach allows taking into account regional context in the final version of guidelines.

Are we up to the challenge? 

Our EAPC online survey confirms that many EAPC-affiliated countries are already developing guidelines in accordance with internationally accepted standards. The same methodological approach and expertise is being shared throughout the region.

Is your country/organisation ready to participate in this unique initiative?   

As a pilot for this collaborative network, two countries (Belgium – The Netherlands) currently collaborate in developing one guideline. Their experiences can serve as guidance for other countries engaging in a similar exercise. With our joint knowledge and expertise and with a collaborative effort we aim at supporting all countries and institutions willing to go for it!

If you are interested, please email Anneleen JanssenA kick-off meeting can be organised online (using Zoom), in order to get acquainted, identify opportunities and thresholds, and to prioritise targets. 


  • EAPC Task Forces and Reference Groups, formed by EAPC members from a range of disciplines and different countries, work collaboratively to produce a variety of documents on behalf of the EAPC. Find out more here..
  • If you’d like information about holding an open meeting at the 17th EAPC World Congress Online, please email our Congress Coordinator, Claudia Sütfeld.

Read more posts about the 11th EAPC World Research Congress and 17th EAPC World Congress on the EAPC blog. 

How to access 11th EAPC World Research Congress Online resources

Please join us at the 17th EAPC World Research Congress Online – interactive live sessions 6 to 8 October 2021. Find out more about Submitting an Abstract  or applying for a 2021 EAPC Researcher Award.


Posted in 11th EAPC World Research Congress Online, 17th EAPC World Congress, EAPC Task Forces/Reference Groups, EAPC World Congresses, EAPC World Research Congresses | Tagged | Leave a comment

Clinical Aspects of Palliative Sedation in Prospective Studies: A Systematic Review

What is the current practice regarding palliative sedation in palliative care? This is the main question that answers this systematic review of prospective studies. It is part of a Horizon2020 project, Palliative Sedation, in which different countries and centres across Europe are participating. Consortium members, Dr Maria Arantzamendi, Dr Alazne Belar, RN PhD and Dr Carlos Centeno, MD PhD (researchers at the Instituto Cultura y Sociedad, Universidad de Navarra, Spain), explain more about the conducted study, which is now published in the ‘Journal of Pain and Symptom Management’ and available in open access.  

Alazne Belar Beitia,  Carlos Centeno and María Arantzamendi.

There are symptoms that are common at the end of life as disease progresses. Usually, there are different treatment options available to manage these. Sometimes, however, standard treatments are no longer effective; the benefits are not reached in sufficient time or treatments provoke more negative effects than benefits.In these cases, palliative sedation may be considered as a therapeutic option.

The European Association for Palliative Care (EAPC) defines palliative sedation as the monitored use of medications intended to induce a state of decreased or absent awareness to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and healthcare providers. 2 (p.593)

But what are the most common refractory symptoms and how are they assessed? Who participates in the decision-making process for palliative sedation? Which are the treatment strategies applied, and how is the effectiveness of palliative sedation measured?

These are some of the questions that we have tried to answer. We undertook a search of prospective studies published in the last five years in: Pubmed, Medline Wos, Embase, Cinahl and Cochrane Library. We identified 43 articles and included ten that were conducted in palliative care services in six countries: Belgium, Italy, Japan, The Netherlands, Colombia and Mexico. The majority related to patients with cancer.

Which are the most common refractory symptoms and how are they assessed?

The most frequently reported refractory symptoms were delirium, pain and dyspnoea. Some studies also considered psychological and/or existential distress as exceptional refractory symptoms for the administration of palliative sedation. Four studies mentioned the presence of more than one refractory symptom leading to the administration of palliative sedation.

Most of the papers did not specify how the assessment of refractory symptoms was conducted. This highlights the importance of implementing the use of standardised tools. In the case of psychological and existential distress, a more comprehensive evaluation is important. We concluded that when identifying a symptom as refractory, an interdisciplinary evaluation by clinicians with sufficient experience and expertise is essential.

Who participates in the decision-making process for the initiation of palliative sedation?

The reviewed articles reported that the decision-making process was usually led by the palliative care team. In addition, some of the studies support the idea that clinical assessment would benefit from a multidisciplinary team approach by experienced and expert professionals.

What treatment strategies are applied and how is the effectiveness of palliative sedation measured?

The general use of palliative sedation among different countries is similar, with midazolam reported as being utilised as the first line medication in all of the papers included. Additionally, some studies reported the use of adjuvant medications for symptom control such as opioids. Of interest, half of the included studies reported about the administration of hydration and nutrition during palliative sedation. They reported a tendency to maintain or reduce hydration.

Despite the information provided in these important papers, there are still some unanswered questions: How many countries have guidelines on the use of palliative sedation? What is the effect of palliative sedation on patient comfort? Which are the side effects of this therapeutic option? What are the families’ experiences regarding palliative sedation?

Answering these and other relevant questions is the aim of this H2020-funded project about palliative sedation. Follow the progress of this project on the EAPC blog where we have our own Palliative Sedation category!


1. de Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. J Palliat Med. 2007 Feb; 10(1):67–85.

2. Cherny NI, Radbruch L. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009 Oct; 23(7): 581–93.

Download the complete article from the Journal of Pain and Symptom Management– Open Access
This post relates to the article, ‘Clinical aspects of palliative sedation in prospective studies. A systematic review’ by Maria Arantzamendi, Alazne Belar, Sheila Payne, Maaike Rijpstra, Nancy Preston, Johan Menten, Michael Van der Elst, Lukas Radbruch, Jeroen Hasselaar, Journal of Pain and Symptom Management, Sept 19, 2020; S0885-3924(20) 30754-5 doi: 10.1016/j.jpainsymman.2020.09.022. Online ahead of print.

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Posted in EAPC COLLABORATIVE PROJECTS, Palliative sedation, Palliative Sedation, SYMPTOM CONTROL | Tagged , | 1 Comment

The Digital Legacy Conference 2021: ‘PalliCovid & Exploring New Dimensions’ at #EAPC2021

James Norris is Founder of The Digital Legacy Association (the professional body for digital assets planning and digital legacy safeguarding). Here, he unveils plans for their annual conference, which will examine how Covid-19 has changed and accelerated society’s attitudes around end-of-life planning, death and bereavement, and invites you to help shape the conference by submitting your abstract.

James Norris.

We are delighted to announce that The Digital Legacy Conference 2021 will take place online on 5 October 2021. The conference will feature as part of the 17th World Congress Online of the European Association for Palliative Care and the theme of the Digital Legacy Conference will be ‘PalliCovid & Exploring New Dimensions’.

The world we knew has changed. Covid-19 has unleashed chaos and the new normal is yet to be defined. The importance that communication technologies have had on our lives and the ways in which people think about death, say their goodbyes and remember their loved ones are changing.

“I tell you: one must still have chaos in oneself to give birth to a dancing star. I tell you: you still have chaos in yourselves.”  Friedrich Nietzsche, Thus Spoke Zarathustra

Nilay Erdem: Stakeholder and Engagement (EMEA) Facebook speaking at the Digital Legacy Conference 2019, EAPC 2019 in Berlin, Germany.

Despite the chaos, moving and memorable moments have taken place. Compassionate, person-centred care by professionals, final goodbyes being said through mobile phones and care home residents being reunited with their loved ones following months of social distancing measures. Palliative care, healthcare and social care professionals have developed new, online communication skills, innovations have launched and new ways of working adopted.

The Digital Legacy Conference 2021 will examine how Covid-19 has changed and accelerated society’s attitudes around end-of-life planning, death and bereavement. It will review the impact of Covid-19 on Palliative Care (#PalliCovid), whilst ‘exploring new dimensions’ in the online and digital space. An array of international speakers will share their experiences, discuss research, highlight new ways of working and examine areas of best practice.

Dr Ros Taylor MBE and Dr Mark Taubert speaking at the Digital Legacy Conference 2019, EAPC 2019 in Berlin, Germany.

Following a series of conferences in London, New York and Berlin, the Digital Legacy Association will be running this year’s Digital Legacy Conference online. The event will be streamed live from Michael Sobell Hospice (North London), and available simultaneously on the Digital Legacy Association website and on the EAPC website.

Call for abstracts opens today – 18 January 2021

We welcome abstract submissions from professionals, academics and the general public in areas relating to:

  • Death in today’s digital world
  • Digital death and Covid-19
  • Digital legacy, digital assets and digital estates
  • Grieving online
  • Digital graveyards
  • Utilising technology to deal with death
  • Digital memory loss
  • Funeral streaming
  • Laws and terms of service around digital assets and digital legacy
  • Preparing for a digital death
  • Artificial Intelligence and death
  • Robotics and death
  • Death, Cryptocurrency and other digital financial assets
  • Death and Virtual Reality
  • Best practice in the wake of Covid-19
  • Diffusion of information and adoption
  • The patient’s perspective
  • The changing role of the professional.

Please submit your abstract here.

The Digital Legacy Conference is a not-for-profit event run by the Digital Legacy Association. It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference please call +44 (0) 20 3286 6812 or email:

Please join us live on 5 October at The Digital Legacy Conference 2021

Delegates who register for the EAPC World Congress will also be granted free access to the live stream of this year’s Digital Legacy Conference. Those unable to attend the EAPC World Congress can purchase tickets for the Digital Legacy Conference for £20 from their website.


Call for Abstracts for 17th EAPC World Research Congress Online #EAPC2021 now open. We welcome research abstracts and also abstracts about exciting new initiatives in service delivery. Deadline: 14 February 2021. Please join us at the 17th EAPC World Research Congress Online – interactive live sessions 6 to 8 October 2021. Find out more, register and submit your abstract here.

Follow all the EAPC World Congress #EAPC2021news here.

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Tips and traps: Holding an open meeting online at #EAPC2020 … and #EAPC2021

EAPC Task Force and Reference Group Co-chairs reflect on holding an open meeting in an online congress – and encourage you to follow their example at #EAPC2021…

Left to right: Lizzie Chambers, Ana Lacerda (Children and Young People Task Force), David Oliver, Simone Veronese (Neurology Reference Group – Palliative Care), Sébastien Moine and Scott Murray (Primary Care Reference Group).

Open meetings are an important feature of EAPC congresses: a chance to showcase some of the incredible work that lies behind the hardworking task forces, reference groups and collaborative projects that form the backbone of the EAPC (European Association for Palliative Care). One advantage of hosting our first online congress was the access we had to data. Despite the three days of live/interactive congress being long, many delegates chose to attend open meetings of our EAPC groups, which took place during the coffee and lunch breaks. Attendance at open meetings during in-person congresses can be low, with just a few participants depending on the topic. But during the online congress, attendance ranged from 31 to 113 participants, with an average attendance of 70 delegates.

In this post, the chairs of some EAPC groups explain what it was like to hold their first online open meeting. We hope that their comments, laced with some useful things to consider, will spur you on to join our World Congress Online in October 2021, either as a delegate or to hold an online meeting.

Lizzie Chambers and Ana Lacerda co-chaired the EAPC Children and Young People  Task Force Open Meeting:

We took advantage of holding our live open meeting during the lunchtime session of the dedicated Seminar on Children’s Palliative Care during the 2020 World Research Congress. This opportunity was amazing for our taskforce. 

This kind of virtual conference was a first for many of us and despite some anxiety about how it would all work, the technology was actually really simple even for us old folk!  We also noticed that the virtual format meant that we had many more questions than we would normally have at a face-to-face event and the 45-minute slot was well filled.

We had two excellent presentations from Dr Jo Taylor from the University of York, talking about the findings from the SHARE study, which was looking at family experiences with Covid-19, and from Dr Eve Namisango from the Cicely Saunders Institute talking about progress with the development of a children’s palliative outcome scale. Our third speaker was going to talk about the impact of the pandemic on services and how telehealth will become a major way to provide Children’s Palliative Care in the future. The only major glitch we had was with forgetting that this speaker was in Australia and the different time zone meant that she fell asleep before her presentation!  

Reflecting on the event, we felt that it would have been better if we had made our session more interactive, for example having members of our task force hosting discussions at virtual tables and with more linkage back to the work of the task force.  

We all felt that there were some real advantages to having a virtual congress, not least that it meant that it was easier for delegates from low-income countries to attend.

Our task force would welcome future meetings being a hybrid of face-to-face and virtual to make the most of both worlds. 

David Oliver and Simone Veronese co-hosted the EAPC Neurology Reference Group  – Palliative Care Open Meeting:

Our meeting was successful with 31 people attending. We had some discussion – maybe not quite so easy as in face-to-face meetings – but it was very helpful to have Simone as a co-host to help keep the discussion going. We would recommend two hosts for such discussions, to make the most of the meeting.

One feature that was really useful was the opportunity to have a dedicated webpage on the congress platform. This helped to raise awareness of the Reference Group. Overall, it was worthwhile holding our open meeting, but we did feel restricted by being online.  

Scott Murray and Sébastien Moine, Co-chairs, EAPC Primary Care Reference Group, reported on their group’s virtual meeting in a separate post published on the blog, EAPC Primary Care Reference Group Open Meeting goes live at #EAPC2020. Describing it as a very lively and informative meeting, they claimed to have (possibly!) the youngest participant Zooming in from Taiwan with his dad.

Dr Sunitha Daniel.

Dr Sunitha Daniel was a delegate at the congress and took part in a group discussion during the live congress. Sunitha is a Specialist Medical Officer in Palliative Medicine and Community Oncology, National Health Mission, General Hospital, Kochi, Kerala, in India, and currently a PhD student in the UK.

The EAPC 2020 virtual congress was an innovative and great learning experience. The on-demand presentations gave us opportunity to listen to lectures in advance and in our own time also with the facility to ask questions in advance. The technology worked very well; interactive sessions using the chat box as well as Q&A functions enabled a group discussion during live session. Due to considerations of travel and other expenses, I am likely to be opting for virtual events in future if available.

Explore new dimensions in palliative care at #EAPC2021…

The Scientific Committee, led by Professor Fliss Murtagh, are putting together an exciting programme that promises you “the opportunity to be re-energised; to hear about exciting innovations and progress from within our palliative care community, and the wider services and communities with whom we work”. (See Fliss Murtagh’s post on this blog). But we need your input too – please think about submitting an abstract for #EAPC2021 and help us explore these new dimensions in palliative care. Read more about Abstract Submission here – you have until 14 February to submit!

Please join us at the 17thEAPC World Research Congress Online – interactive live sessions 6 to 8 October 2021. View our congress website to find out more, or dive in and register now!

If you’d like information about holding an Open Meeting, please email our congress coordinator, Claudia Sütfeld.

Links and resources

Posted in 11th EAPC World Research Congress Online, 17th EAPC World Congress, EAPC Task Forces/Reference Groups, EAPC World Congresses, EAPC World Research Congresses | Leave a comment