Global views on palliative care for older people: Priorities in research and clinical practice

Julie Ling, CEO European Association for Palliative Care, and Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, invite you to a Special EAPC Seminar organised jointly with the PACE project – Palliative Care for Older People in Care and Nursing Homes in Europe.

Prof Sheila Payne

Dr Julie Ling

On Friday 25 May 2018, within the 10th EAPC World Research Congress in Bern (24 to 26 May 2018), the EAPC and the European Union (EU)-funded PACE project are organising an evening seminar (from 6pm-9pm) where we will explore state-of-the-art palliative care for older people in a range of settings and from a global perspective.

The seminar brings together outstanding international experts and researchers to discuss international evidence on palliative care for older people. The speakers include: Sean Morrison (USA), Deborah Parker (Australia), Richard Harding (UK focusing on Africa), and Lieve Van den Block (Belgium). The seminar will be chaired by Sheila Payne (UK) who will guide the discussions and debates about quality of care in nursing and care homes throughout Europe and globally. Finally, a panel of experts will also share their views on how to improve palliative care for older people and provide an opportunity for debate.

We anticipate a lively session with plenty of ways in which attendees can participate. The session represents an exciting opportunity to hear from leading investigators who will systematically assess the evidence on strategies to improve quality of care and to promote greater impact in nursing homes on quality of care, dying and bereavement support for older residents and their families.

PACE is a European-funded project (FP7, 2014-2019) comparing the effectiveness of palliative care for older people in care or nursing homes in Europe and aims to advise policy-makers on optimal palliative care practices. PACE compares the effectiveness of healthcare systems with and without formal palliative care structures in care or nursing homes in six EU countries (Belgium, Finland, Italy, The Netherlands, Poland and the UK). It also used a cluster randomised controlled trial to investigate the impact of an educational and development intervention called ‘PACE Steps to Success’ aimed at integrating palliative care in care or nursing homes’ structures, on patient, family and staff outcomes and on cost-effectiveness.

If you are interested in palliative care for older people, this seminar is the place to learn about the current research and practice, in different settings as well as different parts of the world, and to meet some of the current leaders in this field.

The seminar is open to both people attending the Congress and also to those living locally who can register for this session alone. We look forward to seeing you there. If you require further information, please contact EAPC head office or to register follow the links below.

Links 

How to register for the PACE seminar and/or EAPC World Research Congress

10th EAPC World Research CongressFor latest updates on the 10th EAPC World Research Congress, read an earlier post on the EAPC Blog.

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Dementia and Palliative Care – A Good Fit?

Fran McInerney, Professor of Dementia Studies and Education at the Wicking Dementia Research & Education Centre, University of Tasmania, Hobart, Australia, explores the background to and some implications of the longer article she and colleagues published in the March issue of Palliative Medicine.

Professor Fran McInerney

My work in dementia palliation research, education, and clinical practice spans over two decades, and the Wicking Dementia Research and Education Centre at the University of Tasmania in Hobart, Australia (1) has been home to my and my colleagues’ collective dementia-related activities since 2008.

While dementia is a complex syndrome logically attracting attention from fields including prevention, cure, psychological support, and rehabilitation, at this time it also remains unequivocally a terminal condition. True dementias result in the progressive and irreversible death of brain cells, which is ultimately incompatible with life; Isaacs and Caird (2) coining the term ‘brain failure’ to describe this phenomenon more than 40 years ago. The progressive course of the dementias involves significant and multiple symptoms, systematically outlined by Mitchell and colleagues in 2009. (3) It was this second paper that arguably mobilised attention around the life-limiting nature of dementia and associated needs, for which palliative care has emerged, albeit perhaps tentatively, as a fitting frame.

Our own and others’ work with health providers and the broader community has led us to the conclusion that dementia (including its association with mortality) is not well understood. (4) We believe this matters, for the quality of life of both people living with and dying from dementia and those who care for them. This commitment led us to develop the Understanding Dementia Massive Open Online Course (UDMOOC) (5) in 2013, which addresses normal anatomy, pathology, symptomology and care approaches across the dementia trajectory, and which has attracted over 140,000 participants worldwide.

Our recent paper explored UDMOOC participants’ understanding of palliation. While pleasing to see that there was a general awareness of the tenets of palliative care, it was concerning to us that our respondents – the majority of whom had pre-existing experience of dementia care needs – did not nominate links between dementia and this care frame. Our findings at a minimum give rise to the following questions:

  • Is it of relevance to palliative care that both consumers and health providers may not be sufficiently health literate to recognise dementia’s terminal nature and/or the relevance of palliative services?
  • Do we have a responsibility to raise awareness of the role of palliation for this global group of over 45 million people?
  • What is our capacity and capability to respond to dementia needs from within a palliative frame?
  • With the number of people living with and dying from dementia worldwide expected to triple by 2050, how do we position ourselves?

These are no small questions, but with dementia fast becoming the major cause of death in older adults and carrying a significant symptom load, we hope to see further and urgent discussion about this critical public health issue.

References and links

  1. Wicking Dementia Research & Education Centre Homepage: http://www.utas.edu.au/wicking/home.
  2. Isaacs, B., Caird, F. 1976. ‘Brain Failure’: A contribution to the terminology of mental abnormality in old age. Age & Ageing, 5(4): 241-244.
  3. Mitchell, S., Teno, J., Kiely, D., Shaffer, M., Jones, R., Prigerson, H., Volicer, L., Givens, J., Hamel, M. 2009. The clinical course of advanced dementia. NEJM, 361(16): 1529-1538.
  4. Robinson, A., Eccleston, C., Annear, M., Elliott, K., Andrews, S., Stirling, C., Ashby, M., Donohue, C., Banks, S., Toye, C., McInerney, F. 2014. Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia. Journal of Palliative Care, 30(3): 158-165.
  5. Wicking Dementia Research & Education Centre – Understanding Dementia MOOC. Express your interest in the next course starting on 10 July 2018!

 

Read the full article, and many others on dementia, in this Special Edition of Palliative Medicine:  Palliative Care in Dementia
This post relates to a longer article, ‘How is palliative care understood in the context of dementia?  Results from a massive online course’ by Fran McInerney, Kath Doherty, Aidan Bindoff, Andrew Robinson, James Vickers, published in Palliative Medicine, 2018, Vol 32 (3): 594-602. Article first published online: December 13, 2017. https://doi.org/10.1177/0269216317743433

Click here to download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers (and other EAPC-related papers) free of charge from the EAPC website at www.eapcnet.eu Choose Resources. and from the left-hand side-bar choose Clinical & Care, Publications & Documents. Now LOGIN or REGISTER and scroll down to download articles.

 

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Dementia, what is the role of the Specialist Palliative Care Service?

Jacinta Kelly, Clinical Nurse Specialist, Community Palliative Care Team, North West Hospice, Sligo, and Dympna O’Connell, Lecturer, Department of Nursing at St Angela’s College, Sligo, Ireland, explain the background to their longer article published in the January/February issue of the European Journal of Palliative Care. 

Dympna O’Connell

Jacinta Kelly

Many challenges face healthcare professionals in providing a palliative care approach to patients with dementia. Hindmarch (2012) outlines some of these as ethnicity, geographical location, cultural beliefs and attitudes around death and dying. Over the last number of years there has been an increasing demand for specialist palliative care (SPC) services for people with dementia and it begs the question – does everyone who is dying with dementia need specialist palliative care services?

We suggest no, but how do we differentiate those who do? I (Jacinta) have worked as a nurse in specialist palliative care for 14 years. I do not consider myself as a specialist in dementia care, but I am a specialist in palliative care. The opposite can be said for HCPs (healthcare professionals) working within dementia care. They are specialists in dementia care but not in palliative care. We suggest what is needed is a collaborative approach between these two areas of expertise.

We invite you to consider this scenario: two patients are in an acute hospital and both are approaching the end of their life. Patient A has a cancer diagnosis and patient B has a dementia diagnosis. The symptoms they experience at the end of their life are very similar and the emotional impact of the loss on their loved ones similarly distressing. Both patients and their families deserve equal access to SPC services, where a focus is placed on symptom control, comfort and a peaceful death. Another key question is – how do healthcare professionals working in generalist settings know when they have reached a point where they need to refer to SPC services?

In the Republic of Ireland, the National Clinical Care Programme for Palliative Care (Health Service Executive, 2016) developed eligibility criteria for people with a malignant or a non-malignant diagnosis for access to and discharge from SPC services. While these criteria are beneficial, HCPs in this study were either not aware of their availability or felt they were too generic in focus and need to be more specific in their guidance in relation to non-malignant diseases such as dementia. While SPC services have a role in caring for non-cancer patients, with this role comes an increasing demand for these services; and Fisher (2006) raises concerns regarding the impact of increased referral rates and their potential to overwhelm and dilute existing SPC services.

This study explored the dementia patient’s journey through SPC services from the perspective of healthcare professionals. We hope that the findings from the study will encourage further debate from both HCPs working in dementia care and specialist palliative care settings.

References and links

Hindmarch, J. (2012) Nurse leaders have the vision and the expertise to widen access to palliative and end of life care. International Journal of Palliative Nursing. 18(11), 531-533.

Health Service Executive National Clinical Programme for Palliative Care. March 2016. Accessed January 2018.

Fisher, K (2006) Specialist palliative care for patients with non-cancer diagnosis. Nursing Standard. 21(4), 44-47.

Contact Jacinta Kelly by email.

Read the full article in the European Journal of Palliative Care

This post relates to An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC) – Healthcare Professionals’ Experiences’ by Jacinta Kelly and Dympna O’Connell published in the January/February edition of the European Journal of Palliative Care (EJPC) (vol. 25 (1).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

Look out for Part Two of this article, An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC). Part 2 – Carers Experiences’ in the March/April issue of the European Journal of Palliative Care.

Posted in Dementia, EAPC-LINKED JOURNALS, European Journal of Palliative Care, Nursing | Tagged | Leave a comment

Palliative care in Nepal: Current steps to providing Universal Health Coverage

Dr Dan Munday, Dr Ruth Powys, Professor Bishnu Paudel and Professor Rajesh Gongal, explain the background to their longer article published in the January/February issue of the European Journal of Palliative Care.

In October 2017, the World Hospice and Palliative Care Day, ‘Don’t Leave the Suffering Behind, focused on Universal Health Coverage (UHC). UHC, recognized as essential for achieving Sustainable Development Goal 3 – Good Health and Wellbeing for all by 2030 – has been defined by the World Health Organization as “all individuals and communities receiv[ing] the health services they need without suffering financial hardship. It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation, and palliative care.” 1

Patients, relatives and staff celebrate World Hospice and Palliative Care Day at Green Pastures Hospital in Pokhara

Patients, relatives and staff celebrate World Hospice and Palliative Care Day at Green Pastures Hospital in Pokhara

Our article in the current edition of the EJPC, ‘Palliative Care in Nepal: Current steps to achieving Universal Health Coverage’, explores the progress so far in making palliative care, as part of UHC, a reality in this beautiful Himalayan country.

Much of Nepal is sparsely populated with long distances travelled over difficult terrain for people to reach even basic health care. Yet in Nepal, as in other low-income countries, increasingly more people are suffering from non-communicable diseases. Chronic disease management, including palliative care, needs to be provided by the primary healthcare workers in these remote areas.

In 2017, Nepal adopted a National Strategy for Palliative Care that recognizes the need for providing appropriate palliative care in all parts of the country. It builds on the firm foundation that has been developing over the last 20 years and recognizes Nepal’s other health resources, including highly trained general practitioners who often work in rural hospitals. The strategy sets a framework for development over the next 10 years to ensure that those suffering, even in remote areas, are not left behind.

Each of the article’s authors, has been involved in different ways in developing palliative care in Nepal: establishing hospice and palliative care services, securing ‘in country’ morphine production, running training programmes, and undertaking needs assessment research. Along with colleagues in the Nepalese Association for Palliative Care (NAPCare) and international partners, including Two Worlds Cancer Collaboration and EMMS International, they have been centrally involved in developing the national strategy.

Work started in Nepal has also led to international collaboration with colleagues in other settings where access to health care is challenging. Together we have been developing the Supportive and Palliative Care Indicator Tool for low-income settings (SPICT-LIS) due to be launched later this year. 2

As we work to ensure palliative care is available even for the most marginalized, we hope that our experiences in Nepal will enable us all to catch the vision and potential of UHC.

References and Links

1. Universal health coverage (UHC) fact sheet (accessed 07.02.2018).

2. Supportive and Palliative Care Indicator Tool for low-income settings (SPICT-LIS) (accessed 07.02.2018).

More about the authors …

Dan Munday and Ruth Powys are medical consultants from the UK and Australia, respectively, who have been based in Nepal and involved in palliative care development and needs assessment work in Nepal over the last five years. Dan is visiting professor at the National Academy of Medical Sciences (NAMS) and adviser to NAPCare. Ruth is based at Green Pastures Hospital in Pokhara.
Bishnu Paudel is Professor of Medical Oncology at NAMS, consultant at Thankot Hospice, Kathmandu and President of NAPCare.
Rajesh Gongal is Professor of Surgery and Rector of Patan Academy of Health Sciences. Along with colleagues, Rajesh founded Hospice Nepal in 2000.

 

Read the full article in the European Journal of Palliative Care
This post relates to ‘Palliative Care in Nepal: Current steps to achieving Universal Health Coverage’ by Dan Munday, Ruth Powys, Bishnu Paudel and Rajesh Gongal is published in the January/February 2018 edition of the European Journal of Palliative Care (EJPC) (vol. 25 (1).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

 

 

Posted in ADVOCACY & POLICY, EAPC-LINKED JOURNALS, European Journal of Palliative Care, NATIONAL & INTERNATIONAL REPORTS | Tagged , | 2 Comments

CARE – a show about the people who bring life to days

In this series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

An Irish hospice teamed up with a theatre company resulting in a remarkable show about daily hospice life. Regina McQuillan, Medical Director, St Francis Hospice, Dublin, and Sarah Jane Shiels and Sophie Motley of the WillFredd Theatre Company, explain some of the practical and ethical challenges they faced in creating the show.

Dr Regina McQuillan

WillFredd as a theatre company works by integrating into a community. CARE resulted from the integration of director, Sophie Motley, and designer, Sarah Jane, Shiels into the working lives of palliative care workers over the course of 14 months, by visiting the canteen and getting to know the staff.

Working together, we had specific conversations with the staff and interviewed doctors, nurses, care assistants, occupational therapists, physiotherapists, complementary therapists, chaplains, volunteers and security staff.  Two work-in-progress pieces were developed, as the company felt strongly that the work should be shown to hospice staff and the artistic community and feedback received.

The biggest challenge was how to negotiate patient confidentiality. WillFredd’s work engages constantly with a community and, for the first time, WillFredd had to limit the access of the group as a whole to some of the information. It is an interesting balance to consider when working in arts and health. We asked one of the doctors in the hospice to invent a character and case study for us, and hence, our main character, Anne, came  into being. In this way, the piece was factually accurate, containing real and typical information, but it was also invented so it did not breach any confidentiality.

Sarah Jane Shiels

Another challenge was where to place the patient. In the hospice setting, the patient is the focus. There have been many theatrical productions dealing with end-of-life care, and the patient is very often the main character. With CARE, we wanted to foreground the people working for the patient. We found that whenever we asked a performer to play the part of the patient, the focus immediately went straight to them and our intention was lost. Our solution was to use a mannequin as our patient – ‘Anne’ – an inanimate object whose importance and presence onstage was the result of the attitudes of the performers around her. She was at once their patient and their tool, she could be cared for and discarded as a prop when needed.

CARE opened in Dublin in 2014, and then toured nationally around Ireland, significantly to both theatres and hospices in each county we visited. WillFredd hosted numerous post-show discussions, some focusing on the artistic elements of the show, others specifically on the medical and palliative care.

Sophie Motley

Through long-term engagement with the palliative care community, WillFredd created a new audience who attended the final production. Our artistic representation received positive feedback from the healthcare workers. Many of our audience attended due to a family or friends receiving palliative care. We gained very positive feedback from this audience demographic, many of whom found themselves very moved and at the same time surprised at how much humour was in the production.

Links

Read more posts in the Arts and Palliative Care series on the EAPC Blog.

Posted in PATIENT & FAMILY CARE, The Arts in palliative care | Tagged , , , | 1 Comment

Final programme for the 10th EAPC World Research Congress now online …

 

Ragnhild Green Helgås, on behalf of the scientific committee, gives an update on preparations for the upcoming world research congress in Bern.

10th EAPC World Research CongressThe 10th World Research Congress of the EAPC in Bern, Switzerland, is just a couple of months away, and the final programme is now available on the congress website.

Ragnhild Green Helgås 10th EAPC World Research Congress

Ragnhild Green Helgås

As there are some new concepts this year, we recommend taking a few minutes to get to know the programme. That way you can make sure you don’t miss out on your favourite topics.

Streams of topics

The oral, abstract-driven part of the programme is organised in ‘streams’. These are overall topics reappearing in all parallel sessions, allowing participants to follow a certain topic throughout the congress. The streams are colour coded and so it’s easy to navigate.

The three main topics are:

  • Cancer and palliative care
  • Public health and policy
  • Ageing and palliative care.

In addition, there will be some freestanding sessions with a diversity of topics, and two method discussion sessions – one focusing on randomized controlled trials, and one addressing qualitative research methods.

Presentation categories

A total of 897 abstracts were submitted, from 55 countries. Out of these, 63 were rejected due to a low average review score, and one was withdrawn. The abstracts will be presented in the following categories:

Plenary abstracts

Five of the highest-ranked abstracts have been selected for presentation in a plenary session.

Free communication abstracts

More than 120 abstracts will be presented in parallel sessions. There are in total 22 abstract-driven parallel sessions, including two method discussion sessions and a Swiss session consisting of submitted abstracts from local researchers.

Poster presentations

Poster presentations are an essential cornerstone of every EAPC congress and this year is no exception! About 400 abstracts will be presented in a poster exhibition, which will be displayed in one set during the congress. Poster presenters will be available for questions and discussions several times during the congress – you will find information about their presence on each poster.

Print only

Owing to capacity limitations, about 300 abstracts, which did not receive a high enough score to get a poster presentation, will be presented as print only. These abstracts will be published in the online abstract book, but will not be presented in any other way during the congress.

Join us in Bern

Whether this is your first research congress or you’re a veteran of many EAPC World Research Congresses, we’re confident you will develop new skills and strengthen your capabilities with innovative tools and evidence-based methods. We look forward to welcoming you to Bern in May, to sharing the latest research and to building strong lasting connections with you all.

And even if you can’t attend the congress in person, we hope you will still feel a part of it by joining us on Twitter at #EAPC2018 and on the EAPC Blog where we plan to publish some posts live from the congress.

Links

  • View or download the programme here.
  • Register here.
  • For all other information about the congress, click here.
  • Follow us on Twitter @EAPCvzw – our official congress hashtag is #EAPC2018
  • Check out the EAPC Blog next week when Julie Ling and Sheila Payne write about a Special EAPC Seminar organised jointly with the PACE projectPalliative Care for Older People in Care and Nursing Homes in Europe.
Posted in EAPC ACTIVITIES, EAPC World Research Congresses, RESEARCH | Tagged | Leave a comment

The next Italian challenge: Primary palliative care development

Caterina Magnani is a physician specialized in anesthesiology and general practice, and Head of Research at Antea Palliative Care Centre in Rome, Italy. Together with colleagues of Antea, she has translated the ‘EAPC Primary Palliative Care Toolkit’ into Italian. Carlo Peruselli, as a collective member of the EAPC, has reviewed the translated document.

Here, she explains why primary palliative care development is currently one of the main challenges in Italy.

Dr Caterina Magnani of Antea

Dr Caterina Magnani

In March 2017, the Italian Ministry of Health published a document that reports an updated version of the ‘Essential Health Care Levels’ 1 that must be provided by the National Health Care System. Two levels of home-based palliative care programmes have been defined: the ‘basic’ and the ‘specialist’. A ‘basic’ palliative care programme, as defined by the Italian official document, is a series of interventions, coordinated by the general practitioner (GP), aimed to ensure the palliative approach. It is quite similar to the ‘primary palliative care’ (PPC) concept and it provides optimal symptom management and adequate communication with patients and families. 2 Instead, a ‘specialist’ palliative care programme is defined as high-intensity health assistance, delivered by dedicated multi-professional staff and reserved exclusively to patients with complex symptom management and clinical instability. Specialist palliative care teams are composed of physicians and nurses with a high level of competence in palliative care, social workers, a psychologist and other healthcare professionals with experience in palliative care.

Now, thanks to this change, Italy has to face a big challenge: the development of a primary palliative care culture!

Furthermore, global average life expectancy has increased and people are living longer with a rise of chronic illness so that many patients will need skilled primary palliative care.

Antea is a non-profit organisation that has provided palliative care in Rome since 1987, education programmes and clinical research. Now, we plan to encourage the spread of an early palliative care approach through a project aimed at implementing educational initiatives.

First, we decided to translate into Italian the ‘EAPC Toolkit for the development of Palliative Care in the community’, 3 which we firmly believe enables individuals and organizations to implement innovative projects in primary palliative care (PPC). Anyone who is interested in promoting PPC development should use the toolkit questions to get a better understanding of barriers and opportunities for PPC, and its dissemination throughout our country. (See ‘Links and Resources’ below to download the Italian translation of the toolkit).

Next steps …

The next step of our project is to provide an Italian version of the ‘Supportive and Palliative Care Indicators Tool’ (SPICT),4 in order to help physicians to identify patients who could benefit from an early supportive and palliative care approach. We also plan to start training programmes on symptom management and good communication techniques facilitated by expert palliative care clinicians and educators. This training will target groups of GPs, nurses and hospital medical specialists (oncology, neurology, geriatrics and general medicine departments), to improve their skills in early identification of patients with palliative care needs, pain and other symptom management and good communication. We plan to run the courses in GPs’ medical centres and acute care hospitals so that everyone can participate without moving from the workplace.

Our project is only at the beginning but we firmly believe that primary palliative care is the first, indispensable step towards the improvement of quality of life of people with deteriorating health,5 and we are highly motivated to continue our mission.

References

  1. Decreto del presidente del consiglio dei ministri 12 gennaio 2017. Definizione e aggiornamento dei livelli essenziali di assistenza, di cui all’articolo 1, comma 7, del decreto legislativo 30 dicembre 1992, n. 502. (17A02015) G.U. Serie Generale n. 65 del 18 marzo 2017.
  2. Scaccabarozzi G, Lovaglio PG, Limonta F, Floriani M, Pellegrini G. Quality assessment of palliative home care in Italy. J Eval Clin Pract. 2017 Aug;23(4):725-733.
  3. Murray SA, Firth A, Schneider N, Van den Eynden B, Gomez-Batiste X, Brogaard T et al. Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015 Feb; 29 (2):101.
  4. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2014 Sep; 4(3): 285-90.
  5. Murray SA, Kendall M, Mitchell G, Moine S, Amblàs-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017 Feb 27; 356: j878.

Links and resources

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