Where you live and where people die

A new study has just been published to explore regional variations in geographic access to inpatient hospices and place of death. Emeka Chukwusa (Cicely Saunders Institute, London, UK) and Ros Taylor (Hospice UK and Royal Marsden Hospital, London, UK) explain the background to their longer article published open access in PLoS One. 

Dr Emeka Chukwusa (left) and Dr Ros Taylor.

The setting in which people die is important. It affects the quality of experience and is a preference we try to meet. But we need a good understanding of how geographic access to palliative and end-of-life care facilities affects where people die. Such knowledge is important to help guide care planning, reduce inequalities, and develop strategies to improve the experience of care in all settings.

In 2019, we conducted a study to explore urban-rural differencesin the association between geographic access to hospice and where people die. We discovered that patients who lived further away from inpatient hospices are more likely to die at home.Our study also revealed that urban dwellers had better access to inpatient hospices compared to rural dwellers. Most inpatient hospices in the UK are charitable and have arisen in affluent, large towns and cities. The intent is to target populations that can support their fundraising needs.

Transport links will obviously be better than in rural areas, supporting easier access. Motivated by this finding, we further examined regional differences in geographic access to inpatient hospice in England, UK. We used national death certificate data from 2014, comprising deceased adults (aged 25 years and above) who died at home and in inpatient hospices. Patients were grouped into one of the nine regions of England based on their residential addresses.

We used drive times as an indicator of geographic access. Drive times were calculated from the residential addresses of over 123,000 patients to 184 adult inpatient hospices. One can observe from the map below that access varied hugely across regions, with a marked north-south differential. 2

 Figure 1:  Geographic access to adult inpatient hospice unit. Source: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0231666

We then looked at regional variations in the association between geographic access to hospice and hospice deaths. Deaths in inpatient hospices were compared with home deaths. We found that increasing drive times from hospices reduced the chances of dying in a hospice. This decrease was more obvious in six regions.

Regional differences in geographic access to inpatient hospices highlight the need for a targeted approach to service improvement. People want to spend time with a loved one in their final days. However, the time spent travelling and physical distance will diminish the quality and quantity of time together. Although a hospice ending may be the preference – the geography makes it too difficult. The only option will be a home death, which may work well with enough support, or a hospital death, which research shows is the least preferred option for most. The implications are that ‘hospice at home’ palliative support may need to be geographically prioritised in areas furthest from an inpatient unit to ensure equal access to good end-of-life care. Other options might be enhanced palliative care in care homes in areas furthest from the local hospice.

Our study suggests that geography of hospices should be a key enabler of palliative and end-of-life care service planning.

References

1.Chukwusa, E., et al., Urban and rural differences in geographical accessibility to inpatient palliative and end-of-life (PEoLC) facilities and place of death: a national population-based study in England, UK. Int J Health Geogr, 2019. 18 (1): p. 8.

2.Chukwusa, E., et al., Regional variations in geographic access to inpatient   hospices and Place of death: A Population-based study in England, UK. PLoS   One, 2020. 15 (4): p. e0231666.

More about the authors…

Dr Emeka Chukwusa is a Research Associate at Cicely Saunders Institute, King’s College London, UK. Dr Ros Taylor is a palliative care doctor at Hospice UK and Royal Marsden Hospital, London UK. Follow Ros on Twitter at @hospicedoctor

This work is part of The GUIDE CARE Services project – set up to describe variations in place of death and the factors that affect these in order to guide ways to improve the quality of care at the end of life. This project is partly supported by the National Institute for Health Research (NIHR) Applied Research Collaborations (ARC) South London. ARC South London is part of the National Institute for Health Research (NIHR) – more information here.

 

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EAPC Task Force on International Collaboration for the Development of Health Care Professional Guidelines in Palliative Care

WELCOME TO #EAPC2020 – THE 11TH EAPC WORLD RESEARCH CONGRESS 2020 – WITH LIVE INTERACTIVE ONLINE SESSIONS 7 TO 9 OCTOBER AND ON-DEMAND CONTENT ONLINE FROM 21 SEPTEMBER 

Ahead of the congress, we’re delighted to give a glimpse of what’s in store at #EAPC2020. Today, Dr Peter Pype, Chair, EAPC Task Force on International Collaboration for the Development of Health Care Professional Guidelines in Palliative Care, introduces the work of the task force and invites you to join him and other colleagues in an Open Meeting on 8 October 2020.


Dr Peter Pype.

Are you involved in developing evidence-based guidelines to enable clinicians to provide high-quality patient care? Do you sometimes feel like you’re struggling in isolation and would like to be part of an international network of institutions with similar aims and experiences?

If that resonates with you, then please read on and maybe join us at our task force’s Open Meeting at the EAPC World Research Congress Online this autumn.

The European Association for Palliative Care (EAPC) Task Force on International Collaboration for the Development of Health Care Professional Guidelines in Palliative Care aims to create an international network of institutions that are developing guidelines throughout the EAPC region. The implementation of evidence-based guidelines in different settings and countries allows healthcare providers to provide high-quality patient care. But writing guidelines is a huge and difficult task based on a strict methodology, often beyond the capacity of a single organisation. That’s why it’s worthwhile investigating possible collaboration between organisations and countries in order to obtain maximum collective outcomes combining individual efforts.

Aims of the task force

  1. To provide an overview of initiatives in palliative care guideline development across the EAPC region: in which countries, by which institutions, by which methodology are guidelines currently being developed?
  2. To connect existing, and support new guideline developing initiatives through the icreation of a collaborative network.
  3. To develop, test and implement a methodology of guideline development focused on common pathways and shared efforts. The first part (e.g. literature search, quality appraisal and data extraction) could be part of a shared effort, while the second part (e.g. writing a locally adapted guideline, piloting the guideline in the local healthcare system), would be undertaken by the individual institution.

Join our Open Meeting at #EAPC2020 and find out more…

During the EAPC virtual congress we are holding an Open Meeting where we will present the results of our work:

  • An overview of the mapping of the guideline developing institutions in the EAPC region: institutions, countries and the methodologies they use.
  • The results of a pilot testing of two countries jointly developing a guideline: experiences, obstacles and learning moments.

These will be discussed during the Open Meeting with the intention to start a scale-up in other countries and invite other institutions to join the network. Please join us at our live interactive online Open Meeting on 8 October. The meeting will be held during the coffee break at 11.00 to 12.00 CET– keep up to date at https://eapcresearchcongress2020.eu/

Links


JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11th EAPC WORLD RESEARCH CONGRESS ONLINE 2020 – interactive online sessions 7 to 9 October 2020 and on-demand content online from 21 September.

A blend of Pre-recorded On-demand Sessions, Live Presentations, Live Panels hosted by international experts, Children’s Seminar, Poster Sessions, and EAPC Group Meetings will bring you all of the latest research from the world’s top researchers in palliative and end-of-life care. CME accreditation will be available. Masses of content will be available on demand from late September until January 2021.

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

To comfort always – a message of inspiration for 21st century palliative care nurses

CONTINUING OUR SERIES TO CELEBRATE THE INTERNATIONAL YEAR OF THE NURSE AND MIDWIFE 2020 AND THE BENEFITS THAT NURSING AND MIDWIFERY BRING TO THE HEALTH OF THE GLOBAL POPULATION.

To mark this world first, the European Association for Palliative Care (EAPC) is publishing a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce. 

Today, we are delighted to welcome as our guest writer, Professor Philip Larkin, Professor of Palliative Care Nursing at University of Lausanne, Switzerland.


Prof Philip Larkin.

I was recently asked to contribute to a new guideline on end-of-life care on the grounds that nursing remains an essential component of good care of dying people. On reflection, what good care actually means is a point of conjecture. However, in my preparation, the word ‘comfort’ seemed to appear in different guises and pervade the language used to describe what we ultimately hope to achieve out of the complex work of palliative care. Indeed, the phrase ‘to comfort always’ appeared frequently in my search, attributed to a wide range of scholars from Hippocrates onwards, and reflected in a number of books and publications related to palliative care, including for example, David Clark’s revised biography of Cicely Saunders in 2016.

Other scholars and clinicians too, have ascribed to the notion of comfort as an integral part of care and the alleviation of suffering (see for example, the autobiography of Edward Livingston Trudeau who spent his life living with and researching into tuberculosis in the 19thcentury). However, from a nursing perspective, the evidence about the function and benefit of comfort is relatively sparse. It can certainly be found as a prerequisite for care in many foundation documents, such as Florence Nightingale’s Notes on Nursing, and later in many of the nursing models which became the backbone of nursing science in the early 1960s and 1970s. My own search revealed some interesting conceptual analyses of comfort (stalwart of academic nursing students in the 1980s) and, as noted, some contemporary reflections, including those of Dame Cicely Saunders. On the whole, comfort seems to be an implicit expectation rather than a measurable outcome and as ill-defined as the term ‘palliative care’.

And yet…

In these last frenetic months of some of the greatest challenges that nurses (and others) have faced in giving care, the desire to provide comfort in a myriad of ways has made a difference. Finding ways for people to say goodbye to their relative, the respectful act of preparing the removal of a person who has recently died to the mortuary or funeral home, managing sudden or unexpected death are quite different from the planned transition towards death associated with palliative care. Choosing to be separated from friends and family for their protection and being present to the sickness of others when the risk to self was equally great. All of these actions speak to a new expression of comfort that, in this International Year of the Nurse and Midwife, we can never forget. Comfort applies to all of us, in equal measure.

What will this mean to us as palliative care nurses? Probably, not a lot in terms of daily practice – (sorry about that!). Nurses will continue to provide the comfort and care which is integral to their practice, in a variety of ways and settings, because it is needed. We might take time to reflect on what these last months have meant and what the future holds, but we will continue to do what we do best as creative and compassionate caregivers. Our nursing contribution will always be that difference.

And still…

The message of comfort is an important one for the next generation of palliative care nurses. As science develops, our practice will change, our investment will grow and our professional identity reframe. That is the way it should be, as nurses become forefront in the determination of clinical excellence. If we can remember that in all the technological advancement we might achieve, the inspiration of comfort, as a healing principle in our practice, has the potential to sustain and shape us to seek new opportunities and even greater achievements for optimal patient and family care into the 21stcentury.


Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020.View the series here and join us again in August when Dr Nicoleta Mitrea PhDDirector of Education and Development – Nursing, Hospice Casa Sperantei, Brasov, Romania, will be our guest writer. 

Links and resources


JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11th EAPC WORLD RESEARCH CONGRESS ONLINE 2020 – interactive online sessions 7 to 9 October 2020.

A blend of: On-demand Sessions, Live Presentations, Live Panels hosted by international experts, Children’s Seminar, Poster Sessions, and EAPC Group Meetings will bring you all of the latest research from the world’s top researchers in palliative care. CME accreditation will be available. Masses of content will be available on demand from 21 September until January 2021.

Be a part of the first-ever EAPC World Research Congress Online. Learn and interact with leading researchers and chat with other registered delegates from the global palliative care community – all in the safety of your own home or office.

Posted in International Year of Nurse & Midwife 2020, Nursing | Tagged | Leave a comment

Palliative sedation does not shorten survival in the last days of life in patients with advanced cancer: A propensity score-weighted analysis of a prospective cohort study

Only 71 days to #EAPC2020 … The 11th World Research Congress of the European Association for Palliative Care which, for the first time ever, will take place online with interactive online sessions 7 to 9 October 2020 and on-demand content available from 21 September. 

Ahead of the congress, we’re delighted to give some highlights of what’s in store at #EAPC2020. Dr Naosuke Yokomichi, Department of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Japan, gives a glimpse of his plenary lecture.


Dr Naosuke Yokomichi.

“Is it to finish life?” A patient and his family may ask when we suggest to them palliative sedation. We would say, “No, to relieve your suffering. Generally, palliative sedation does not shorten life.”

But is it true? Are we really sure palliative sedation does not shorten life? How evident is it?

Although many studies have addressed whether palliative sedation shortens patient survival, the evidence is still limited because outcome measures of these studies were not appropriate. We aimed to overcome the methodological issues and to answer this important question in this multicentre prospective cohort study in Japan.

Imminently dying patients often experience a variety of distressing symptoms that include delirium, dyspnea, and pain. When symptoms become unbearable and refractory despite comprehensive and interdisciplinary palliative care, palliative sedation is a potential solution to provide relief of suffering. Generally, palliative sedation is defined as the use of sedative medications in dying patients to relieve intolerable suffering from refractory symptoms by a reduction of patient consciousness.

Continuous deep sedation (CDS) is a type of palliative sedation therapy in which sedative medications are administered with the intention of keeping a patient continuously comatose. It is ethically more controversial than other types of palliative sedation, because CDS is potentially life shortening as it contains a depressant effect on the brain stem which can cause perpetuating negative neurological, cardiovascular, respiratory and metabolic effects.For evidence-based discussion on the daily practice in palliative care, the clarification of whether CDS shortens patient survival is of great value.

While a randomised controlled trial seems to be difficult for this population, and generalisability of findings of clinical trials may not be fully applied to the real-world population; an observational study provides comprehensive insight into this topic. Until now, many observational studies have addressed the potential effect of palliative sedation on patient survival, none of which reported that palliative sedation or CDS shortened patients’ lives. A recent prospective cohort study revealed that CDS did not shorten patient survival from the time of enrolment into a palliative care programme until death after controlling for potential confounders using the propensity score-weighting method.Those studies, however, suffered major limitations and biases. The most critical issue was that the outcome measure was “essentially meaningless”.Survival from the time of enrolment of palliative care programme was too long to compare the effect of CDS on survival, because most CDS was performed in the last days of a patient’s life. In addition, previous studies included selection bias via an ambiguous definition of CDS or unfavourable handling of the missing values, or insufficient adjustment of confounders.

The primary aim of this study was to examine whether CDS shortens patient survival in the last days of life using 1,633 patient data from a multicentre prospective cohort study (EASED study), with precise statistical analysis to overcome the unresolved tasks from the previous studies.

We compared survival after a patient’s Palliative Performance Scale declined below 20 (PPS20) between CDS group and non-CDS group. Briefly, we found that the survival from PPS20 of patients with CDS was not significantly shorter than that in patients without CDS.

Now, we can explain to our patients and families with more confidence than before that palliative sedation is not associated with a measurable shortening of life in patients with advanced cancer. Palliative sedation is a viable palliative care option for alleviating refractory suffering in the last days. Effects of palliative sedation in patients with a better general condition should be studied in the future. I look forward to sharing more information with you at the EAPC World Research Congress Online.


Join Dr Naosuke Yokomichi at his plenary lecture, ‘Palliative sedation does not shorten survival in the last days of life in patients with advanced cancer: A propensity score-weighted analysis of a prospective cohort study’. His session will be available for registered delegates to view on demand from 21 September. Read the abstract of his lecture, and all other congress presentations and posters, in the Book of Abstracts for the 11th EAPC World Research Congress, ‘Palliative Medicine’, 2020 – available online from 21 September until January 2021. Keep up to date with the congress programme at https://eapcresearchcongress2020.eu/

References

  1. Twycross R. Reflections on palliative sedation. Palliat Care2019; 12: 1178224218823511.
  2. Maeda I, Morita T, Yamaguchi T, et al. Effect of continuous deep sedation on survival in patients with advanced cancer (J-Proval): a propensity score-weighted analysis of a prospective cohort study. The Lancet Oncology 2016; 17 (1): 115-22.

Links


JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11thEAPC WORLD RESEARCH CONGRESS ONLINE 2020 – interactive online sessions 7 to 9 October 2020 and on-demand content available from 21 September

A blend of Pre-recorded On-demand Sessions, Live Presentations, Live Panels hosted by international experts, Children’s Seminar, Poster Sessions, and EAPC Group Meetings will bring you all the latest research from the world’s top researchers in palliative and end-of-life care. CME accreditation will be available. Masses of content will be available on demand from 21 September until January 2021.  Learn and interact with leading researchers and chat with other registered delegates from the global palliative care community – all in the safety of your own home or office.

Posted in 11th EAPC World Research Congress Online, EAPC World Research Congresses, Palliative sedation | Tagged , | 1 Comment

Global Palliative Care: Reports from the Peripheries

Katherine Irene Pettus is a familiar name for her work in global palliative care as Advocacy Officer of the International Association for Hospice and Palliative Care (IAHPC) and her earlier contributions to this blog. Writing in a personal capacity, Katherine has documented her professional and spiritual journey in palliative care in a recently published book and here she explains the background to the book.

Katherine Irene Pettus.

The COVID-19 lockdown in Spain, where I have been living for the past few years, inspired me to collect some of the blogs I have written over the last few years documenting visits with home care teams that allowed me to accompany them when I went on work trips to East Africa, Latin America, Central Europe, and India. They also describe our advocacy efforts at the United Nations (UN) Organizations, and some theoretical/theological reflections on palliative care as praxis. I figured that if the virus was going to have its way with me, a slightly more permanent record of the work could be useful for students of palliative care, mainly as a humble tribute to the many dear colleagues who are the heart and soul, the salt and light, of what I see as the global palliative care movement.

Many practitioners, who are focused on building their practices and caring for their patients, aren’t aware of the fact that they are part of the global movement afoot in all the world’s regions and most countries. This movement is more than the sum of its beautiful parts – of everyone doing their bit at the bedside, working very hard, sometimes against all the odds, without counting the cost, to establish and maintain palliative care services for the few patients they can serve out of the still unreachable multitude.

I am an outsider, not a clinician, but a political theorist and trained hospice volunteer who has participated in interdisciplinary teams and has had the privilege of accompanying patients on their final journeys. Palliative care by definition is the medicine of the weak, and can ensure that no one is left behind, to steal the tagline of the 2030 Agenda for Sustainable Development. Palliative care’s heretofore unappreciated gifts are finally getting global attention in the midst of the 2020 pandemic, not the context we would have chosen for a global health debut, but one that we can be sure will never be forgotten.

Palliative care practitioners’ experiences with what is often the chaos of end-of-life communications and experience with symptom management in high stress situations have never been more in demand, and never more appreciated than in these terrifying times. Advocates and clinician leaders must ensure that health systems don’t return to business as usual once this particular crisis is over, with palliative care sidelined and under-resourced in the shadow of its well-developed health service siblings: prevention, treatment, and cure.

Palliative care advocacy is a form of speech: it gives voice – voce– to suffering, and the relief of suffering. The blogs bring the voices of providers, patients, families, and advocates at distinct peripheries: geographical, legal, and existential, to the global health narrative, which tunes out those voices – expels them to the margins of policy development. Palliative care advocacy needs voice and testimony – stories – to become politically salient to politicians at the national level, to secure funding and recognition. And palliative care providers can be stronger advocates when they acknowledge their citizenship in a cosmopolitan movement.

Our coordinated advocacy contributed to the latest WHO (World Health Organization) Clinical Guidance on Clinical Management of COVID 19, which affirms the global palliative care ethic of non-abandonment highlighted in the book.

Affirmation of this inherent value makes palliative care’s concern with suffering – pathos – profoundly democratic and non-elitist. The qualities and virtues palliative care praxis builds into practitioners at the bedside (the microcosm where they accompany suffering) have the power to shift the public policy valences (the macrocosm where global regional and national health priorities are determined) to ensure adequate care for the most vulnerable among us. It is not overstating the case to say that the work of practitioners worldwide, only a handful of whom are portrayed in the book, is demonstrating the essential value of public health palliative care, which can no longer simply be outsourced to the charitable sector, where a global health ideology focused solely on reducing preventable mortality can easily ignore it.

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Global Palliative Care: Reports from the Peripheries by Katherine Irene Pettus is available as an ebook and paperback, ISBN-13: 979-8648101401. All royalties from this book go to bursaries for trainees at Hospice Africa Uganda, which trains clinicians from all over Africa.

 

 

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Links

JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11th EAPC WORLD RESEARCH CONGRESS ONLINE 2020 – interactive online sessions 7 to 9 October 2020.

A blend of: On-demand Sessions, Live Presentations, Live Panels hosted by international experts, Children’s Seminar, Poster Sessions, and EAPC Group Meetings will bring you all of the latest research from the world’s top researchers in palliative care. CME accreditation will be available. Masses of content will be available on demand from 21 September until January 2021. Be a part of the first-ever EAPC World Research Congress Online. Learn and interact with leading researchers and chat with other registered delegates from the global palliative care community – all in the safety of your own home or office.

LATE-BREAKING ABSTRACTS… Share your experience of COVID-19 and the Palliative Care Response. View information and how to submit your abstract here.  Deadline: 31 July 2020.

 

 

 

 

 

Posted in ADVOCACY & POLICY | Tagged | Leave a comment