Changing patterns of mortality during the Covid-19 pandemic


Today’s guest writers are Rachel Cripps, Dr Anna Bone, and Professor Katherine Sleeman from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, United Kingdom, Professor Fliss Murtagh and Dr Sean O’Donnell from the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, UK, and Dr Stephen Barclay from the University of Cambridge, UK.

Read on to hear about their recent report on Better End of Life 2021: Dying, death and bereavement during Covid-19 and the findings from a hot-off-the-press publication on changes in mortality patterns and place of death during the COVID-19 pandemic, which is Open Access …

Top row, clockwise: Anna Bone, Rachel Cripps, Sean O’Donnell, Fliss Murtagh, Stephen Barclay and Katherine Sleeman.

The COVID-19 pandemic has increased mortality worldwide and has affected how1 and where people die.2 As a result, issues surrounding dying, death and bereavement have been brought to the fore in the media and public discourse.

The Better End of Life Programme is a three-year collaborative project between Marie Curie, King’s College London Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge. This exciting new programme will explore the state of dying, death and bereavement across the four nations of the United Kingdom and propose a policy agenda that aims to ensure best possible end-of-life care is experienced by all.

In our first research report of the series  Better End of Life 2021: Dying, death and bereavement during Covid-19 we shed light on the multiple and ongoing impacts of the COVID-19 pandemic on end-of-life care. We showed that UK deaths peaked during the third week of April in 2020, with 24,691 deaths of which 9,509 were caused by COVID-19. In the same month, care homes became the most common place to die in England for the first time, raising the profile of this important sector and highlighting that care homes are key settings for end-of-life care.

We have recently published a paper 4 that explores patterns of place of death in the four nations for the UK in more detail (now available to download in Open Access). A COVID ‘wave’ has not been clearly defined; so, we defined a wave as ‘10% or more increase in total deaths, compared to expected deaths, sustained for at least three weeks or more’. We found that across the four nations of the UK, deaths at home increased during the first COVID wave, which in the UK occurred between March 2020 and May 2020. The higher-than-average number of deaths at home was sustained throughout 2020 and peaked again during the second wave, which for the UK occurred between October 2020 and February 2021. We don’t fully understand why this happened. With visitor restrictions in place, many people may have actively avoided hospital or hospice admission, opting to die at home through fear of contracting COVID-19 and to ensure they could be surrounded by their loved ones.5 The extent to which this phenomenon has been observed in other nations affected by COVID-19 is unclear.

Figure from the Better End of Life 2021: Dying, death and bereavement during Covid-19. Research Report 3

We do not know whether societal preferences and expectations for death and dying have shifted permanently as a result of the pandemic. What is clear is that dying at home may not be a positive experience without adequate support. Therefore, primary care services, which play a key role in providing end-of-life care, as well as community specialist palliative care services, must be properly resourced to meet the increasing demand.

While routine data provides an opportunity to examine patterns of mortality, we currently know little about how death and dying were experienced by patients and carers in the past year. It is crucial that we understand this missing piece, listening to those who have experienced end-of-life care during the pandemic, so that important lessons are learnt. As part of the The Better End of Life Programme we next plan to gather the views and experiences of bereaved family members across the UK, to inform policy with the aim of ensuring the best possible end of life is experienced by everyone in the future.


  1. Lovell N, Maddocks M, Etkind SN, et al. Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care. J Pain Symptom Manage. 2020;60(1):e77-e81.
  2. Bone AE, Finucane AM, Leniz J, et al. Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications. Palliat Med. 2020;34(9):1193-201.
  3. Sleeman KE MF, Kumar R, O’Donnell S, Cripps RL, Bone AE, McAleese J, Lovick R, Barclay S, and Higginson IJ. Better End of Life 2021. Dying, death and bereavement during Covid-19. Research Report: Marie Curie, UK; 2021. Available at:
  4. O’Donnell SB, Bone AE, Finucane AM, et al. Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations. Palliat Med. 2021:
  5. Higginson IJ, Brooks D, Barclay S. Dying at home during the pandemic. BMJ. 2021;373:n1437.

Links and resources

More about the authors…

Professor Katherine Sleeman is Laing Galazka Chair in Palliative Care, NIHR Clinician Scientist and Honorary consultant in palliative medicine. She is academic lead on the Marie Curie funded Better End of Life Programme. Rachel Cripps is a Research & Projects Coordination Assistant.  Dr Anna Bone is a Research Associate. Professor Fliss Murtagh is Professor of Palliative Care, and Associate Director of the Wolfson Palliative Care Research Centre. Dr Sean O’Donnell is an Academic Foundation Programme Doctor. Dr Stephen Barclay is University Senior Lecturer in Palliative and End of Life Care at the University of Cambridge.

Funding statement
This work is supported by Marie Curie, grant [MCSON-20-102].

#EAPC2022 – A world congress that offers new avenues for international collaborative research in palliative care. Make sure you are part of it – find out more and submit your abstract here:



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European Certificate in Essential Palliative Care: 20 years on and going stronger

Approaching 20,000 clinicians globally have completed a version of the European Certificate in Essential Palliative Care. Professor Max Watson, Director of Project ECHO at Hospice UK, who originated the course and helped develop it with colleagues at the Princess Alice Hospice, explains its history and continuing impact.

Professor Max Watson

It is 20 years since the introduction of the European Certificate in Essential Palliative Care, a vital tool in providing clinicians with expert palliative care knowledge and supporting hundreds of thousands of people around the world get the care they need at the end of life.

Its journey began on a cold spring day in 1999 in Newry, Northern Ireland. Staff of Newry Hospice were startled by the arrival of an ambulance with blue lights flashing and a doctor inside accompanying a very ill patient, who needed urgent palliative care.

That patient had developed increasing pain at the neighbouring district hospital. Sadly, he died just 20 minutes after arriving.

This was the impetus that became the European Certificate in Essential Palliative care, a home-study, eight-week course aimed at teaching generalist clinicians key palliative knowledge and skills to ensure as many as possible, regardless of setting, are confident to provide essential end of life care to their patients, and families.

An initial course created for the hospital in Newry was augmented by the team at the Princess Alice Hospice in Esher (south-east England) when I went there for specialist palliative medicine training. In its 20-year existence and development, we’ve benefited from innumerable experts in palliative care contributing, sharing, and giving their time to support a unique programme promoting palliative care to staff engaged with patients approaching the end of life.

Gaining an international reach

The first external centre for the Princess Alice Certificate in Essential Palliative Care (as it was initially called) was the Northern Ireland Hospice. The programme evolved into the European Certificate in Essential Palliative Care when hospices from The Irish Republic, Malta and Jersey joined. Today, there are 13 certificated centres across the UK and Europe training nearly 400 clinicians every six months.

The generous vision, from Princess Alice Hospice, to share and support palliative care learning in countries with limited resources has allowed the programme to gain international reach with participation in Nepal, Albania, Kyrgyzstan, Kazakhstan and, most significantly, India through the Indian Association of Palliative Care. Despite language differences (the course had to be translated into Russian for some candidates), the passion for improving the care of patients is a universal priority.

The Certificate programme was adopted by colleagues from the Indian Association of Palliative Care (IAPC), through a Hospice UK workshop, in 2007. The Indian Certificate developed rapidly, and there are now 43 centres across the sub-continent involved in teaching the IAPC Certificate in Essentials of Palliative Care, to thousands of doctors and nurses.

The course handbook – a key element in the eight-week programme – is now in its 17th edition. Yet further testimony to the dedication of the Certificate team to consistently update, revise and implement new ways of learning and ensure that the prime goal of the programme remains to provide clear and practical support for busy clinicians around the world.  To date, approaching 20,000 clinicians have completed a version of the Certificate globally.

It has been a long journey from when that ambulance arrived outside Newry Hospice to where the programme is today, and we should celebrate its success as a fruitful collaboration that’s led to so many more people being cared for around the world.

Caroline Lucas, Andrew Hoy, Craig Gannon, Clair Sadler and Jane Berg, with support from Catherine Hazel – among many others – have been at the Esher heart of the Certificate’s 20 years of development and recognition for its quality, rigour and commitment to inclusive generalist learning and support.


More about the author

Professor Max Watson is a palliative care consultant in the Western Trust in Northern Ireland and author. He is currently Director of Project ECHO at Hospice UK, a national charity working for those experiencing, dying, death and bereavement. Project ECHO (Extension of Community Healthcare Outcomes), is a tele-mentoring programme of learning, sharing & support that uses video-conferencing technology
Follow Max Watson on Twitter @DrMaxWatsonand Pr0ject Echo @ProjectECHO

#EAPC2022 – A world congress that offers new avenues for international collaborative research in palliative care. Make sure you are part of it – find out more and submit your abstract here:



Is there equitable access to palliative care for people in prison?


In a special series, EAPC task forces and reference groups that work on behalf of vulnerable communities explain what they are doing to enable equity in access to palliative care. Today’s Guest Writers are Mary Turner and Aline Chassagne, Co-Chairs of the European Association for Palliative Care (EAPC) Task Force on Mapping Palliative Care for Prisoners in Europe.

The theme of this year’s World Hospice and Palliative Care Day is: ‘Leave no-one behind – equity in access to palliative care’, and there can be few groups that experience more challenges in accessing equitable palliative care than people in prison. Like populations around the world, prison populations are ageing and in some countries this means that increasing numbers of people are growing old and facing the end of life in prison. They often experience multiple and complex health problems in the last months and years of life, which place enormous strain on prison systems and staff, and present many challenges in terms of environments and facilities, equipment, medications, social care and palliative care.

Dr Aline Chassagne (left) and Dr Mary Turner

The EAPC Task Force on Mapping Palliative Care Provision for Prisoners in Europe was set up in May 2017 with the purpose of examining the provision of palliative care in prisons in a small number of European countries, to make comparisons and facilitate learning between countries. A second purpose of the task force was to create an international network to bring together health and social care practitioners, researchers and prison staff interested in palliative care in prison, to share knowledge and potentially form new collaborations. The network, which started with a small handful of people, now has around 80 members from 20 different countries.

The task force has now completed the first part of the mapping work, a survey of prison systems in seven European countries (Belgium, Czech Republic, England & Wales, France, Scotland and Slovakia) and Australia. [1] In each country, a researcher completed the survey by searching the internet for publicly available data. Survey findings highlighted rising numbers of older prisoners in the four countries that have the highest prison populations (England & Wales, France, Australia and Czech Republic), and increasing numbers of deaths from natural causes, indicating a growing need for palliative care services in the foreseeable future. In only one country (England & Wales), could any evidence of current palliative care provision be found, and that was only available in a small number of prisons. Most countries have policies around early release on compassionate grounds (ERCG) but, contrary to popular belief, very few people are actually released, even when very close to the end of life, because of the stringent conditions around ERCG and the complexity of application processes. This means that, in most countries, prisoners who are approaching the end of life remain in custody until death. The exception to this is France, where very sick and dying prisoners are almost always moved to a secure hospital, where their needs can be better met. The International Association for Hospice and Palliative Care has called for all prisoners who are terminally ill to be considered for ERCG. [2] It is clear that solutions need to be found if prisons around the world are to cope with continually rising numbers of prisoners with palliative care needs, and ERCG for prisoners who no longer pose a risk to the public would seem to be a good place to start. There is still a long way to go before prisoners across the world have equitable access to palliative care.

For further information about the EAPC Task Force, or to join the network, please see: Prisoners palliative care – European Association for Palliative Care, EAPC ( or email Dr Mary Turner.


  1. Turner M, Chassagne A, Capelas ML, Chambaere K, Panozzo S, Teves C, Riegler E. (2021) Mapping palliative care provision in European prisons: An EAPC Task Force Survey. BMJ Supportive & Palliative Care. Available from: Published online 23 April 2021.
  2. IAHPC Policy Brief: Compassionate Release: A Practical, Human Rights-Based Response to the Aging Prisoner Crisis. Available from: Microsoft Word – Compassionate Release policy brief.docx ( Accessed 23 September 2021.

Links and resources

#EAPC2022 – A world congress that offers new avenues for international collaborative research in palliative care. Make sure you are part of it – find out more and submit your abstract here:

Posted in Minority Communities, PATIENT & FAMILY CARE, World Hospice & Palliative Care Day | Tagged | Leave a comment

New ESMO clinical practice guidelines on the care of the adult cancer patient at the end of life

Members of the ESMO Guidelines Committee, Tomasz Dzierżanowski (Poland) and Philip Larkin (Switzerland), introduce ESMO’s latest clinical practice guideline – the first such document that targets both oncologists and palliative care providers by focusing on patient comfort and specifically their physical, psychosocial, and spiritual issues.

Tomasz Dzierżanowski (left) and Philip Larkin

There is a raft of clinical practice guidelines (CPGs) released every year by international and local organisations concerning numerous symptoms and clinical settings in cancer. Nevertheless, in August 2021, for the first time, the European Society of Clinical Oncology (ESMO) published new guidelines on the end-of-life care of cancer patients. Although there is a body of evidence for optimal management of many symptoms during early stages, or in the course of cancer treatment, it remains scarce when referring to the last weeks or days of life.

The ESMO end-of-life (EoL) Clinical Practice Guidelines is the first such document targeting both oncologists and palliative care providers by focusing on patient comfort and specifically their physical, psychosocial, and spiritual issues. The novelty of these recommendations comes down to several aspects. First, recommendations on managing selected symptoms at the end of life are dispersed across dozens of CPGs. Thus, there was a need to collate these pieces of evidence into one comprehensive document, revise, verify, and formulate a complex and streamlined approach to care for the dying patient. Further, these new CPGs reference the most up-to-date detailed clinical practice guidelines on pain, dyspnoea, and several other symptoms critical in the last days of life.

Second, these ESMO EoL care guidelines provide statements on several complex symptoms and procedures in the last days of life, such as considering judicious assessment with regards to hydration and nutrition, how to approach this in the last days of life, and the appropriate insertion of lines and catheters. Furthermore, the complexity of ‘diagnosing’ the last weeks of life and in recognizing them, how to convey decisions about stopping systemic anticancer treatments and discontinuation of prophylactic anticoagulation, etc.

Third and of utmost importance, these guidelines emphasise the essential need for communication with the patient and the family defined as the unit of care at EoL. Effective communication and shared decision-making are essential at EoL – poor communication remains an Achilles’ heel of oncology despite an unprecedented improvement in medical technology. How to communicate with the patients who are parents of young children? – this is an example of critical communication aspects raised in this relatively short document.

For the first time, ESMO has recommended the management of spiritual distress as a key element of routine oncological care. Tools to screen the spiritual needs of the patients and suitable interventions, such as referral to spiritual care professionals, mindfulness, art, narrative, and music therapy, meaning-oriented therapy, or dignity therapy are also evidenced.

The last innovation, but often new for many clinicians, is the recommendation to screen and recognise psychosocial distress among caregivers and family members in the pre-death phase to assess and appropriately address bereavement needs as routine referral for bereavement support is not always indicated or warranted.

The decision to cease life-saving treatment is not easy for the oncologist. It incurs both legal consequences and moral dilemmas. Therefore, the ESMO clinical practice guidelines on EoL care as a synthesis of the state of knowledge, and the best practices of care in the last days of a cancer patient’s life, may help those complicated and challenging decisions in the oncology setting.


‘Care of the adult cancer patient at the end of life: ESMO Clinical Practice Guidelines’ by GB Crawford, T Dzierżanowski, K Hauser, P Larkin, AI Luque-Blanco, I  Murphy, CM Puchalski, CI Ripamonti, on behalf of the ESMO Guidelines Committee, is published in ESMO Open, Vol. 6, issue 4. Published online 17 August 2021.

You may also be interested in New ESMO recommendations for palliative and supportive care during the COVID-19 pandemic  by Nathan Cherny, Anna KL Reyners and Elisabeth DeVries published on the EAPC blog, 24 April 2020.

More about the authors

Tomasz Dzierżanowski, MD, PhD, is Assistant Professor, Laboratory of Palliative Medicine, Department of Social Medicine and Public Health Medical University of Warsaw, Poland and Medical Director, Caritas Diecezji Warszawsko-Praskiej. He is also Vice-President of the Polish Society of Palliative Medicine and Deputy Editor-in-Chief of Medycyna Paliatywna/Palliative Medicine. Contact Tomasz by email.

Prof Philip Larkin, PhD, MSc, BSc, is Chair of Palliative Care Nursing, Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Switzerland. He also directs the Master of Science in Advanced Nursing Practice at the Institute for Higher Education and Research in Healthcare (IUFRS), University of Lausanne.

#EAPC2022 – A world congress that offers new avenues for international collaborative research in palliative care. Make sure you are part of it – submit your abstract here.


English Palliative and End of Life Care: Several Observations from an Anthropologist: An interview with Dr Erica Borgstrom, winner of the 2021 EAPC Post-Doctoral Award

Highlights of every European Association for Palliative Care (EAPC) Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice.

We talk to Erica Borgstrom, PhD, Senior Lecturer in End-of-Life Care and Medical Anthropology at The Open University, United Kingdom, about the research that has led to her winning the 2021 EAPC Post-doctoral Award.

What, or who, was your inspiration for a career in palliative care? 

Dr Erica Borgstrom

Erica Borgstrom: My career in palliative and end-of-life care research started when I worked with Stephen Barclay (an academic GP and honorary palliative care consultant) and Simon Cohn (a medical anthropologist) at the University of Cambridge. Prior to that I had done research on other topics that brought up issues of death (such as infanticide and homicide) and what it meant to value life. Seeing how committed Stephen was (and still is) to teaching medical students about palliative and end-of-life care, and reading how students were encountering this teaching, made me realise that I could bring my skills and interests to understand this field more. In doing so, I’ve been supported by both Stephen and Simon (as well as many others) over the years, which has enabled me to make a career out of my interests.

Can you tell us briefly about the research that has led to your winning this award and some of the main findings?

EB: For my doctoral research I examined how ‘choice’ is understood in end-of-life care policy and practice in England. This is predominately framed through advance care planning. I then set out to ethnographically observe how people encounter and do (or do not do) choice in this way. There were many interesting things that came from this study, but my key highlight is that people (that is patients, those close to them, and even healthcare professionals) do not regularly do choice (advance care planning) in the ways that policy envisions. There are many reasons for that, from finding time and the words to have certain conversations even down to how the forms are made (e.g. glossy paper is hard for people to write on). Importantly though, many people who were asked to make decisions about their future were doing so in a way that reflected concern for more than just themselves as an individual. I therefore argue for more relational ways of understanding how people approach the end of life. Whilst my research has focused on England, the findings have relevance beyond this setting by drawing attention to the range of, what some might consider mundane or everyday, elements that impact advance care planning and the need to take a more relational approach that reflects how people understand and live their lives.

Can you tell us about some of the creative ways that you’ve used insights from your work?

EB: I believe public engagement with research is really important and can be so much more than showcasing headline figures or snappy summaries (which both have their places as well). Working at The Open University has given me amazing opportunities to explore creative ways to do this. I’ve taken the findings and insights from my research to inspire several short films. Some of this work uses my research as a basis to create dramas that audiences can connect with in a way that helps them challenge their own presumptions and actions. An example of this is the ‘Life or Death Decisions’ film and associated educational interactive on OpenLearn. Others – like the BBC Ideas film ‘Should everyone have an ‘end of life’ plan?’  – illustrate that there are nuances in how people think and talk about advance care planning and why they are motivated to do it (or not). During 2021, with a colleague Sharon Mallon (a sociologist), I’ve used my knowledge about experiences of dying and grief to create a community space within the university that acknowledges people’s experiences of loss during the pandemic. We’ve collated these and supported contributors to write pieces to reflect their experiences; these are published as ‘Narratives of COVID – Loss, dying, death and grief during COVID-19′.

From your anthropology perspective: What is so interesting about palliative care? How can we encourage more young anthropologists to undertake research in palliative care?     

EB:  There is a long history of anthropologists studying health and illness as well as death and dying, including palliative and end-of-life care. Some of these have sought to understand palliative care (or individual field sites, such as hospices) as specific cultural spaces. For me as an anthropologist, palliative care is fascinating because at its core, there is a sense of shared values about care, life and death, and at times these go unquestioned. Yet, they are also the site of some of the tensions within and beyond the profession (or field, depending on how one is defining it). Such as who should be providing palliative care? What does ‘good’ or ‘quality’ look like, and who is defining this with what consequences? What happens when palliative care values ‘rub up against’ (as I’ve heard in my research) other priorities or perspectives? Palliative care lends itself to many questions, and because it is also shifting and evolving over time, it is one that lends itself to new research over time.

To encourage more anthropologists to study palliative care, over the past few years, I’ve supported the Social Science End of Life Care network. We collaborate predominately over email and occasional workshops; people can email me if they are interested in joining. Part of this is figuring out how to do research (e.g. what kinds of methods, what kinds of questions), as well as how to balance being at the margins or intersections of academic disciplines.

From my experience, there is an interest out there from anthropologists, but it can be difficult to ‘get in’. Things that could also encourage more anthropologists are structural and about the practices within the palliative care research community. Such as funding for this kind of research and/or hiring social scientists on research projects and giving them space to write more anthropological and sociological pieces. Another element is the active promotion and engagement with the research and researchers that exists. This signifies that this kind of work is valued and that their anthropological interests have space within palliative care. 

If you could recommend one anthropological text about palliative care for others to read, what would it be?

EB: It is hard to narrow it down to just one, but I really appreciate the work of Sharon Kaufman. She’s an anthropologist based in California who studies end-of-life care in America. In her book ‘Ordinary Medicine’ she does an amazing job to show how social, economic, and bureaucratic forces shape what treatment is possible and made desirable within the American healthcare system. This raises many questions about what standards of treatment and care, how they are created, and as she says, where do we draw the line between life-giving treatment and overtreatment. This type of question is something that comes up a lot in my research within palliative care.

What does winning the EAPC Post-Doctoral Award mean to you? 

EB: It feels like such an honour to have my work – which is grounded in the social sciences and therefore often at the margins of palliative care research – to be recognised with this award. Sometimes the direct findings and impact of the work I do is less tangible than other types of projects, and receiving this award signifies that the EAPC acknowledges and values a diversity of research approaches.         

Let’s talk about life outside of palliative care: What’s your favourite novel? 

EB: One of my favourite books is ‘Looking for Alaska’ by John Green. There is something about the characters searching to know themselves and each other that I find appealing. It’s one of those books where the feelings it generates in me linger, even the sadness. More generally I like all the books written by John Green and Hank Green (plus, I am totally into their vlogbrothers YouTube videos as they are both so thoughtful about life and this is reflected in their work).

Important reminder for all registered delegates to EAPC 17th World Congress

Erica’s presentation, English Palliative and End of Life Care: Several Observations from an Anthropologist, is available for registered delegates to view online on the congress platform until 31 January 2022. Login with your password here.

Everyone can view the Abstracts from the EAPC 17th World Congress 2021Palliative Medicine, volume: 34, issue 1, suppl, page(s):1-243.


  • Find more information on Erica Borgstrom here.
  • Follow Erica on Twitter @EricaBorgstrom
  • View more posts relating to the EAPC 17th World Congress Online, including interviews with Dr Bárbara Antunes, winner of the 2021 EAPC Early Researcher Award, and Professor Harvey Max Chochinov, winner of the 2021 EAPC Clinical Impact Award.


Posted in 17th EAPC World Congress, EAPC ACTIVITIES, EAPC Researcher Awards, RESEARCH | Tagged , | Leave a comment