How to find and promote brilliant palliative care

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE …

Dr Aileen Collier PhD, School of Nursing, Faculty of Medicine and Health Sciences, The University of Auckland, Auckland, New Zealand, and Associate Professor Ann Dadich, Human Resources and Management, Western Sydney University School of Business, Australia, explain the background to their longer article selected as ‘Editor’s Choice’ in the January 2019 issue of Palliative Medicine.

Dr Aileen Collier (left) and Associate Professor Ann Dadich.

Understanding how best to provide safe and high-quality palliative care is one of the greatest societal challenges. No setting is perhaps quite as complex as community-based palliative care with its complexity of patients, technology, organisations, and environments.

The seeds of our research programme on brilliant palliative care were sown at a video-reflexive ethnography (VRE) workshop in Australia. Video reflexive ethnography is a ‘collaborative visual methodology used by researchers and/or health professionals to understand, interpret, and optimize health professionals’ work practices and patients’ experiences’. (1) During a brainstorming session, A/Prof. Ann Dadich and I quickly recognised the synergies of our scholarship. We share an interest in the study of health services, we value the expertise of individuals who deliver, receive, and/or manage health care, and we are committed to trusting relationships of reciprocity with research participants.

Greenhalgh and Papoutsi argued that new research designs encompassing ‘generative learning, and pragmatic adaptation to changing contexts’ (2) are needed to augment conventional methods. Ms Janeane Harlum, Professor Gregory Crawford and their colleagues joined our participatory research journey. They knew that frontline staff often tire of hearing all that goes wrong in healthcare. The elusive gap between empirical evidence and practice seemed forever out of reach.

For this reason, we worked with teams to untangle the complexities of community-based palliative care. With funding from the Agency for Clinical Innovation, our study innovatively combined positive organisational scholarship in healthcare (POSH) with VRE  to transform current understandings and advance scholarship. (3)

Visit to the South Australian research site (left to right): Cathie Jeffs, Ann Dadich, Aileen Collier and Gregory Crawford.

Despite their initial reservations, clinicians came to appreciate the filming of their day-to-day work. Ms Womsley, a senior palliative care clinician who contributed as a co-researcher, said:

‘Because our staff typically work in isolation as they visit patients in their homes, it gave them a rare opportunity to stand back and watch themselves and their colleagues in action.’

Patients and family members valued the opportunity to share what mattered most to them, so others might learn from their expertise. As one family member expressed:

‘[We hope clinicians can] get to know the patients as a normal human being, not a number … [and] have respect because [patients] … have put life in their hands.’

Ms Catherine Jeffs, a senior palliative care clinician and co-researcher, was nominated for an Excellence in Innovation in Research Award. She said,

‘Observing, reflecting, and witnessing… palliative care [via the video-recordings]… enabled our multidisciplinary team to respect, admire, and appreciate each other’s roles and value their everyday work. We have found this study to be an excellent teaching opportunity.’

Our study reveals what constitutes brilliant community-based palliative care. As a point of difference from previous research, brilliance was not solely determined by clinical practice guidelines, key performance indicators, or other superimposed definitions. Instead, and guided by previous research (4-7), it was determined by the co-researchers and participants. Specifically, they considered experiences that exceeded their expectations, brought joy, and enable individuals and the groups they are part of to flourish. Guided by this understanding, the study suggests that brilliant community-based palliative care is contingent on context and is conceptualised as a variety of actions, people, and processes. Palliative care is more likely to be deemed brilliant when it epitomises: anticipatory aptitude and action; a weave of commitment; flexible adaptability; and/or team capacity building.

Research is seldom straightforward – and similarly, POSH VRE is not for the faint hearted. It can be time-consuming, emotionally demanding, and replete with ethical quandaries. It requires researchers to embrace their own vulnerabilities. Nevertheless, the impact is well worth it!

Links

References
  1. Carroll K, Mesman J. Multiple researcher roles in Video-reflexive ethnography. Qualitative Health Research. 2018; 28(7): 1145-56.
  2. Greenhalgh T, Papoutsi C. Studying complexity in health services research: desperately seeking an overdue paradigm shift. BMC Medicine. 2018; 16 (95).
  3. Dadich A, Collier A, Hodgins M, Crawford GB. Using Positive Organizational Scholarship in Healthcare and Video Reflexive Ethnography to Examine Positive Deviance to New Public Management in Healthcare Qualitative Health Research. 2018.
  4. Dadich A, Fulop L, Ditton M, Campbell S, Curry J, Eljiz K, et al. Finding brilliance using positive organizational scholarship in healthcare. Journal of Health Organization and Management. 2015; 29 (6): 750-77.
  5. Fulop L, Kippist L, Dadich A, Hayes K, Karimi L, Smyth A. What makes a team brilliant? An experiential exploration of positivity within healthcare. Journal of Management & Organization. 2018; Epub-ahead-of-print.
  6. Karimi L, Dadich A, Fulop L, Leggat S, Rada J, Hayes K, et al. Empirical exploration of brilliance in health care: Perceptions of health professionals. Australian Health Review. 2016; Epub-ahead-of-print.
  7. Karimi L, Dadich A, Fulop L, Leggat SG, Eljiz K, Fitzgerald JA, et al. Brilliant health service management: Challenging perceptions and changing HR practices in health services. Asia Pacific Journal of Human Resources. 2018; Epub-ahead-of-print:1-17.

Palliative MedicineREAD THE FULL ARTICLE IN PALLIATIVE MEDICINE
This post relates to the longer article,‘What does it take to deliver brilliant home-based palliative care? Using Positive Organisational Scholarship and Video Reflexive Ethnography to explore the complexities of palliative care at home’ by Aileen Collier et al. published in Palliative Medicine 2019 Volume: 33 issue: 1, page(s): 91-101. https://doi.org/10.1177/0269216318807835. Article first published online: October 26, 2018. Issue published: January 1, 2019.

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2018 saw a major initiative in India to make palliative care accessible to everyone

Dr Jenifer Jeba S is a Professor (Palliative Medicine) at the Christian Medical College and Hospital, Vellore, India. Here, she explains how palliative care and family medicine physicians in India have come together to meet the huge unmet palliative care need for people with advanced illness throughout India.

This initiative was supported by Dr Mary Ann Muckaden, former President of Indian Association of Palliative Care (IAPC), and Dr Raman Kumar, President, Academy of Family Medicine Physicians of India (AFPI). 

Dr Jenifer Jeba S

The Indian National Health Policy (NHP) 2017 lists palliative care as an essential healthcare service. Unfortunately, less than one per cent of the population has access to pain relief and palliative care. Why this gap? Could it be lack of awareness, reduced opportunities for formal training, difficulties with opioid access, dearth of professional capacity or all of these?

Joining hands 

The IAPC and AFPI have joined hands to respond to the haunting need for greater access to pain relief and palliative care. A task force consisting of palliative care specialists, community and family medicine physicians from within and outside India, met at the Indian Association of Palliative Care Conference (IAPCON) Coimbatore 2017, where they brainstormed on integration, networking, and bringing specialists and generalist physicians under one umbrella. The task force group published a Joint Position statement (April 2018) that highlighted steps to empower primary care physicians and advocate development and promotion of community-based palliative care throughout India through policy, education and service delivery.

Six key task force recommendations

  • Integrated palliative care into all levels of care including primary care with clear referral pathways, networking between palliative care specialists and family medicine physicians and generalists in community settings, to support education and clinical services.
  • Implement the recommendations of NHP 2017 to develop services and training programmes for upskilling of primary care doctors in the public and private sector.
  • Include palliative care as a mandatory component in the undergraduate (MBBS) and postgraduate curriculum of family physicians.
  • Improve access to necessary medications in urban and rural areas.
  • Provide relevant in‑service training and support for palliative care to all levels of service providers including primary care and community staff.
  • Generate public awareness about palliative care and empower the community to identify those with chronic disease and provide support for those choosing to die at home.

The way forward

There is work in progress to formulate and incorporate essential palliative care competencies into the family medicine post-graduate curriculum. This will go a long way in empowering this group of professionals in the delivery of primary palliative care and across India. A presentation on this is planned in the IAPCON Kochi, 2019 conference by Dr Atreya Shrikant. Many members of the task force and others have taken on this venture and conduct workshops/seminars to educate and offer support for family physicians and general practitioners in their region. This promotes the integrated model of care between palliative care specialists and generalists. SPICT-LIS has been identified as a useful proactive tool for use by generalists to identify patients with advanced life-limiting conditions who need palliative care.

We hope to create awareness, teach and propagate use of this tool, so generalists feel confident to identify and provide palliative care for those in need.

Acknowledgement
I would like to personally acknowledge the ongoing support of international palliative care colleagues:

Dr Scott A Murray, Emeritus Professor of Primary Palliative Care, University of Edinburgh, Scotland; Dr Dan Munday, Consultant in Palliative Medicine, Advisor to Nepalese Association for Palliative Care; Dr Mhoira Leng, Medical Director of Cairdeas International Palliative Care Trust and Senior Advisor for Palliative Care to Makerere University in Uganda; Dr Nikki Pease, Consultant in Palliative Medicine, Velindre NHS Trust, Cardiff, Wales; Dr Alan Barnard, Senior Lecturer, Palliative Medicine, School of Public Health and Family Medicine, University of Cape Town.

Links

Posted in ADVOCACY & POLICY, EDUCATION & TRAINING, NATIONAL & INTERNATIONAL REPORTS | Tagged | 1 Comment

The strengths of Sentinel GP practices in the era of Big Data: Measuring quality indicators for primary palliative care delivered to people with cancer and organ failure

EDITOR’S CHOICE POST . . .

Lieve Van den Block, MSc, PhD, Professor of Aging and Palliative Care Research, VUB-UGhent End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Belgium, explains the background to a longer article selected as ‘Editor’s Choice’ in the October 2018 issue of Palliative Medicine.

Prof Lieve Van den Block

In a time of ‘big data’, what can be the additional value of general practitioners (GPs) filling in questionnaires about the care delivered to their patients at the end of their lives? The EURO SENTIMELC study has been around for a long time. I first published with these data back in 2007 as part of my PhD using data collected by ‘Sentinel GPs’ in Belgium. I also published one of my very first articles using these data in JAMA;as a junior researcher in the field – I was so thrilled.

After that, a number of other countries joined the ‘Sentinel’ initiative and the EURO SENTIMELC study was born.2  The abbreviation stands for European Sentinel Networks Monitoring End-of-Life Care. Sentinel Networks are networks of practices or community based physicians who monitor one, several or an exhaustive list of health problems on a regular or continuing basis. The information from these practices is used to monitor the health of the entire population. It has proved to be a reliable surveillance system for a wide variety of health-related epidemiological data, e.g. on diabetes, stroke, cancer, accidents, and, of course, on end-of-life and palliative care.

Even though these Sentinel Networks started more than a decade ago with registering end- of-life data, some are still actively collecting data now, after so many years. So why are these registrations of added value? Why do GPs still engage in this time-consuming activity (some even still by paper and pencil!) when a lot of ‘data’ can be extracted from medical files or is routine collected for health insurance purposes? Where do they see added value?

Arguably, a number of important elements of care are not easily drawn from existing data or electronic medical files; it is there that the added value of these data collections lay. In the beginning of the EURO SENTIMELC work, we mainly focused on care settings and care settings transitions, to add to the existing literature on place of death data using death certificates. Some important insights included the high frequency of transitions to a wide range of settings and the exponential rise at the very end of life, in particular for people residing at home, but also the fact that these transitions were relatively often requested by patients and/or families.While place of care data are now better extractable from insurance claims data, the networks have identified another highly relevant focus that is not being measured anywhere else, i.e. the quality of end-of-life care in primary care using a core set of quality indicators.

My co-authors and I are very proud that our new paper‘Differences in primary palliative care between people with organ failure and people with cancer: an international mortality follow-back study using quality indicators’ was selected as the ‘Editor’s choice’ for the October 2018 issue of Palliative Medicine.The paper outlines and compares the quality of primary palliative care in Belgium, the Netherlands, Italy and Spain using a set of quality indicators evaluating eight domains relevant to palliative care, i.e. pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; multidisciplinary consultations; involvement of specialized palliative care services; place of death; and bereavement counselling. Using radar charts (see example chart pictured), we tried to visually present the data in an easily graspable way for clinicians and researchers.

We concluded that people who died of organ failure (cardiovascular disease excluding cerebrovascular accidents, or respiratory disease) are at risk of receiving lower quality palliative care than people who died of cancer, but differences vary considerably per country. Because of such intercountry variations, every country should probably identify their own most important priorities for improving their primary palliative care for different patient groups.

Happy reading and please do email us here if you would like to set up analogous studies in your country; our questionnaires and data are open access.

More about the author …

Lieve Van den Block is Chair of the Aging and Palliative Care Research Programme at the VUB-U-Gent End-of-Life Care Research Group in Brussels, Belgium, and coordinator of the EURO Sentimelc study.

References 

  1. Van den Block L, Deschepper R, Bilsen J, Van Casteren V, Deliens L. Transitions between care settings at the end of life in Belgium. JAMA 2007; 298: 1638-9.
  2. Van den Block L, Onwuteaka-Philipsen B, Meeussen K, et al. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe. BMC Fam Pract 2013; 14: 73.
  3. Van den Block L, Pivodic L, Pardon K, et al. Transitions between health care settings in the final three months of life in four EU countries. Eur J Public Health 2015; 25: 569-75.
  4. Penders YW, Onwuteaka-Philipsen B, Moreels S, et al. Differences in primary palliative care between people with organ failure and people with cancer: An international mortality follow-back study using quality indicators. Palliat Med 2018; 32: 1498-508.

Links

Read the full article in Palliative Medicine
This post relates to the longer article, ‘Differences in primary palliative care between people with organ failure and people with cancer: an international mortality follow-back study using quality indicators’ by Penders YW, Onwuteaka-Philipsen B, Moreels S,Donker GA, Miccinesi G, Alonso TV, Deliens Land Van den Block L., published in Palliative Medicine 2018 Volume: 32 (9) issue: 1498-1508. Article first published online: July 30, 2018; Issue published: October 1, 2018. https://doi.org/10.1177/0269216318790386

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Paediatric Palliative Care Research Comes of Age: Call for papers for special issue of Paediatric Palliative Care

Guest Editors of the special issue of Paediatric Palliative Care, Professor Joanne Wolfe and Professor Myra Bluebond-Langner, invite contributions to this special issue of Palliative Medicine.

Professor Joanne Wolfe (left) and Professor Myra Bluebond-Langner

Palliative Medicine’s call for papers for a special issue in Paediatric Palliative Care is a unique opportunity – not to be missed. The call, from the journal with the highest impact factor in palliative care, signals recognition of a growing body of high-quality research worthy of the attention of those who do research and care for seriously ill children as well as for adults. It marks our coming of age, our entry, indeed our contribution to the science as well as to empirically based care of seriously ill children and their families.

Thinking back to the prior century, palliative care was primarily considered an approach to care for persons at end of life. And, without formalization of a subspecialty, there was little academic leadership to move the field forward. Currently, in many countries, palliative care has become a subspecialty in medicine, requiring formal training and certification, including in paediatrics. Other healthcare disciplines, such as nursing and psychology, have also embraced the need for greater investigation into the care of the seriously ill along the full course of the illness trajectory.

Yet, it remains difficult to conduct research in seriously ill children. While millions of children die annually, they present at various developmental stages with highly diverse illnesses and conditions, and are almost always cared for in the context of family, making research of all sorts – in pain, decision making, life course – that much more challenging. Notably, there are few formally trained paediatric palliative care (PPC) investigators, limited funding opportunities, and considerable gate-keeping by ethics approval committees and clinicians.

On the upside, several impactful strategies have moved the field forward. Recognizing the need for empirical research in paediatric palliative care and for the field to have a seat at the table of mainstream research in paediatrics and child health, True Colours Trust established the United Kingdom’s first Professorial Chair in Palliative Care for Children and Young People in 2008. The chair is currently held by Professor Bluebond-Langner; research across the UK serves to identify and fill gaps in knowledge as well as to bring policy and practice into better alignment with evidence. Around the same time, Drs. Joanne Wolfe and Chris Feudtner established Pediatric Palliative Care Research Network , an ‘open source’ research network, which primarily focuses on bringing PPC investigators together, and mentoring trainees and early career investigators. Any PPC investigator can join and the network hosts monthly videoconferences focusing on ‘Works in Progress’ and an annual face-to-face meeting for further networking opportunities. Initiatives such as these have contributed to an increase in trained PPC investigators and high-quality publications.

Through these collaborations and others, the field is making progress. We are looking forward to showcasing this progress in the Special Issue of Palliative Medicine and expect that the publication will set the stage for the next phase of PPC research.

CALL FOR PAPERS …

Find out more here. Deadline for submissions: March 29, 2019.

 

More about the authors . . .

Joanne Wolfe MD MPH is Professor of Pediatrics, Harvard Medical School,
Director of Palliative Care, Boston Children’s Hospital, Division Chief, Pediatric Palliative Care, Dana-Farber Cancer Institute, USA.
Contact Prof Wolfe by email.

Myra Bluebond-Langner, PhD, Hon. FRCPCH, is Professor and True Colours Chair in Palliative Care for Children and Young People, UCL Great Ormond Street Institute of Child Health, Louis Dundas Centre for Children’s Palliative CareUCL, SLMS Faculty of Population Health Sciences, London, UK.
Contact Prof Bluebond-Langner by mail.

Links and resources

Don’t miss the Global challenges in Paediatric Palliative Care: An EAPC Seminar at the 16th World Congress of the European Association for Palliative Care on 23 May 2019, Berlin, Germany. Register now and benefit from the Early Bird registration. (Early Bird registration closes 15 February 2019).

Posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Tagged | 2 Comments

Europe welcomes the Baltic Palliative Care Association

Combining, sharing and adapting knowledge and experience to solve problems more effectively is a hallmark of good palliative care.

Marius Čiurlionis

Marius Čiurlionis is Head of Nursing, Palliative Medicine and Social Care Clinic, VšĮ Centro Poliklinika, Vilnius in Lithuania, and is also a founding member of the Baltic Palliative Care Association. Here, Marius explains how the Association aims to bring together the expertise from across Estonia, Latvia and Lithuania to improve and develop palliative care throughout the region.

The Baltic States are located in the North Eastern region of Europe on the shores of the Baltic Sea, which gives the region its name. The region contains the countries of Estonia, Latvia and Lithuania, all of which share a similar history.

Topical issues in the region are similar in all of the Baltic States.Common development, the overall economic situation and policies are the key to growth and advancement, followed by the population’s high expectation of employment, social life and healthcare services. It is well known that population ageing is a general process across the European Union and the Baltic countries are no exception in this respect.

The first steps toward palliative care were taken a few decades ago. A combination of the ageing population with higher incomes, increased healthcare standards, new technologies and effective treatments enabled professionals to discover and develop a new approach to pain and symptom management. This approach took account of the multi-layered nature of suffering. Through the years of practice, the need for psychological, spiritual and emotional support for patients with life-threatening diseases and their families was recognised.

During the last decade, several policies and changes in the law have been introduced in order to improve the quality of life and develop comprehensive palliative services that include inpatient wards, home care services, and bereavement support.

To have a better picture of the role of palliative care in the Baltic States we need to take a look at the age-standardised death rates among males and females in Estonia, Latvia, and Lithuania compared with EU-28 (Member States of the European Union).

The current numbers suggest that approximately half of people in the Baltic countries approaching the end of life may benefit from palliative care. In addition, the growing ageing population and increasing numbers of people with chronic illness in the Baltics mean that more people could benefit from palliative care in the near future. Unfortunately, palliative care services aren’t yet available to all patients with life-threatening diseases.

In order to estimate the actual need of palliative care and ensure far-reaching and appropriate service development, it is important to understand the similarities and differences in the region. It was recognized by healthcare providers working in palliative care that consolidation could bring potential benefits to the Baltics while developing palliative care.

In 2017, a group of palliative care professionals proposed the creation of a Baltic Palliative Care Association. The aim was to unite medical professionals and non-professionals from across the region who wanted to improve palliative care through prevention and relief of suffering for patients and families through education and medical standards of care.

The first Baltic Palliative Care Specialists Conference, 3 to 5 August 2018, was held in the Latvian town of Liepaja.

In August 2018, we held the first Baltic Palliative Care Specialists Conference in the Latvian town of Liepaja – the first time an event of this magnitude had been organised in the Baltic States. The conference included palliative care practitioners and other health and social care professionals from Estonia, Latvia and Lithuania, as well as leading palliative care practitioners from other countries in the North Eastern region of Europe.

The Baltic Palliative Care Association (BPCA) is about to become a regional non-profit, organisation dedicated to the promotion and development of palliative care. The main goal of the association is to improve the quality of life of patients with advanced, life-threatening conditions and their families through collaboration: to combine our knowledge and experience to solve problems more effectively, systemically and on a larger scale.

We are already planning the 2nd Baltic Palliative Care Conference: Making Palliative Care Meaningful. Please join us in Vilnius, Lithuania, on 12 to 13 September 2019! 

Links

 

 

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Kent in Croatia: Sharing experiences in palliative care

Earlier this week, Renata Marđetko described how a change in the law is leading to real progress in Croatia and told us about recent education and training initiatives. Today, Professor David Oliver, an honorary professor at the Tizard Centre, University of Kent, and Tricia Wilcocks, Head of Education and Research at ellenor hospice, Gravesend, Kent, UK, give their impressions on the events.

Left to right: Professor David Oliver, Professor Anica Jušić and Tricia Wilcocks.

The Tizard Centre, at the University of Kent, and ellenor hospice from Gravesend, Kent, in southern England have been involved in teaching palliative care in Croatia for several years. Palliative care has been slowly developing over the last 25 years but recently the government has introduced a law encouraging all areas to appoint palliative care co-ordinators and develop teams who can visit and support people at home.

In September 2018, I (David Oliver) visited Cakovec in the north of Croatia accompanied by Dawn Dark, a palliative care specialist nurse at ellenor hospice. We were there to attend a two-day seminar, organised by Renata Mardektko, the Palliative Care Co-ordinator for Medimurje county and a former Masters student at the University of Kent.  More than 130 people from all over Croatia took part in this interactive seminar.

Left to right: David Oliver, Renata Marđetko and Dawn Dark.

Representatives of the Health Ministry, local services and the County Prefect all attended. Dawn spoke of the day:

“This was a humbling experience to see so many people come to learn more about palliative care, some driving for over seven hours to attend! They really joined in with the discussion of the principles and difficulties of palliative care and we hope that this will be another stimulus in the development of services in Croatia.”

In October, I was joined by Tricia Wilcocks, Head of Education and Research at ellenor, to take part in the congress organised by the Medical Faculty, University of Zagreb, the Andrija Stampar Public Health School and the Croatian Medical Association. The congress marked two important events: 100th anniversary of the birth of Dame Cicely Saunders, the founder of St Christopher’s Hospice and the modern hospice movement, and the 2018 World Hospice and Palliative Care Day. I spoke of the care of people with neurological disease at home, and Tricia spoke of the importance of sharing care, working for a compassionate outcome. Dr Christine Drummond, from Adelaide, Australia, also spoke on community palliative care, presenting a stimulating case review demonstrating some of the principles of care at home.

Professor Anica Jušić, organiser of the congress, and winner of the WHPCA inaugural Older People’s Champion Award

We were delighted to be able to talk about the care of people at home. We could all share our experiences and help the participants to look at how home care might be developed throughout Croatia. We were also honoured to celebrate the World Hospice Palliative Care Alliance’s (WHPCA) inaugural Older People’s Champion Award, which was presented to Professor Anica Jušić, who had organised the congress.

Links and resources

Read more posts about Eastern and Central Europe on the EAPC blog.

COMING UP ON THE EAPC BLOG – On Monday, the spotlight’s on north eastern Europe when Marius Čiurlionisi, Head of Nursing, Palliative Medicine and Social Care Clinic, VšĮ Centro Poliklinika, Vilnius, Lithuania, introduces the Baltic Palliative Care Association.

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Palliative care in Croatia – a change in the law leads to real progress

Renata Marđetko, Palliative Care Coordinator in Međimurje, Croatia, describes how palliative care has progressed since the national law was changed allowing palliative care to be provided and funded within the national healthcare system.

Health and social care practitioners and volunteers from all over the country attended a two-day course in Međimurje, September 2018.

For more than 25 years, there have been plans to develop palliative care services in Croatia. Professor Anica Jušić started the Croatian Society for Palliative Care (Jušić and Oliver), but progress has been slow. However, there are now more structured developments and services are being set up in different parts of the country with an estimated total of 29 coordinators/service managers, 21 mobile palliative care teams (staffed by a doctor and nurse), ten palliative care wards in hospitals and a hospice. More than ten different charities offer different activities to support palliative care patients. In addition, several mobility aids centres, working in collaboration with palliative care services, will lend equipment, such as hospital beds and wheelchairs, free of charge to patients who are being looked after at home and who cannot get these through the national health service, or afford to obtain them privately.

In 2014, the national law was changed allowing palliative care to be provided and funded within the national healthcare system. Two national strategies for palliative care development have been published by the Ministry of Health (2014-2016, 2017-2020) encouraging local communities (counties) to carry out activities from the National Programme tailored to their resources and needs. It was suggested that coordinators/service managers be appointed within each county and city across Croatia to help start services and coordinate care.

I was fortunate to be appointed as the coordinator of services for the county of Međimurje – the northernmost part of Croatia, which is the most densely populated area outside the capital city, Zagreb. I had previously worked in a similar role in Zagreb and have an MSc in Supportive and Palliative Care from the University of Kent in the UK.

Now, steady progress is under way and palliative care teams of doctors and nurses have been established within the main hospital in the city of Čakovec, and in the community. They are working closely together and with other services to help provide palliative care for the whole population of 125,000. In Medimurje, there is a charity supporting palliative care development as well as a mobility aid centre with 400 mobility aids that can be lent free of charge to patients.

These developments were marked by a talk from Professor David Oliver from the University of Kent on 1 July 2017. David has been visiting Croatia since 2000 and is a visiting professor at the Medical Faculty of the University of Zagreb. He leads an elective module on palliative care for the English curriculum course at the medical faculty every year. More than 100 people came to the meeting in Međimurje, some driving almost four hours to come. Sonja Tošić-Grlač, who represented the hospital and the county, said:
“It was a privilege to speak to such a large group of people, all wanting to learn more and develop palliative care.”

Međimurje, September 2018. Dawn Dark (extreme left), David Oliver (third from left) and Renata Marđetko (extreme right) with the Mayor and Head of Health Department of the county, Head of Home Care Center and representatives of the Ministry of Health.

More recently in September 2018, a two-day day course was organised in Međimurje where David Oliver and Dawn Dark were invited speakers at the workshops. Once again, 130 people who work in palliative care and other health and social services as well as volunteers from all over the country took part in the workshops, emphasizing that the best learning is based on cases from everyday practice. The course was based on the EAPC’s ten core competencies in palliative care. 2

Volunteers in palliative care from Međimurje helped to organise the event. It was amazing to see so many people interested in palliative care. There is now a real opportunity to develop services and here in Medimurje and Čakovec the teams are providing care for many people every day. We hope that this will be an example to other areas in Croatia. With the commitment from the hospital, the county and the  Ministry of Health we are looking forward to the continuing developments over the coming years.

The great challenge currently facing Croatian palliative care is specialist education for the people employed in specialized palliative care services. Our future efforts will therefore be directed to this area.

References and Links 

  1. Jušić A, Oliver D, The early days of the hospice movement in Croatia, European Journal of Palliative Care, 2016: 23 (4).
  2. Gamondi C, Larkin P, Payne S. Core competencies in palliative care: an EAPC White Paper on palliative care education – part 1 and part 2, European Journal of Palliative Care, 2013:20 (2); 20 (3). (EAPC members can download this paper from the EAPC website).

Lončarek K, Džakula A, Mardetko R, Sagan A. Origins and effects of the 2014–2016 national strategy for palliative care in Croatia, Health Policy, Vol.122 (8) 2018. (808-814). [Accessed online 24 October 2018].

Follow the EAPC blog on Friday when Professor David OliverTizard Centre, University of Kent, and Tricia Wilcocks, ellenor hospice, Gravesend, Kent, UK, give their impressions of the two-day course in Međimurje. 

 

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