Palliative Care: All is unfair in love and war

To celebrate World Refugee Day 2018, we are delighted to republish this post that originally featured in 2017 in a series about palliative care in the context of humanitarian crises. The series looks at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict, and how the hospice and palliative care community can offer appropriate support.

Colleagues from the World Health Organization Eastern Mediterranean Regional Office: Dr Ibtihal Fadhil, Regional Adviser, Noncommunicable Diseases, and Gemma Lyons, UNV Technical Officer, Noncommunicable Diseases and Mental Health Division, introduce the series.

Dr Ibtihal Fadhil

In conflict situations, chronic medical conditions, such as cancer, can become a life sentence. Even the most treatable cancers are difficult to survive because access to diagnostic and treatment facilities is limited and unaffordable. Just transporting essential food and medications to besieged areas is difficult and risky; the world watched in September when a convoy of 31 United Nations aid vehicles was attacked in Syria.

Also, basic healthcare infrastructure has all but collapsed in some areas, and the number of medical professionals available is diminishing in war zones.1 Even medical facilities are not a safe haven for treatment and recover. Hospitals are being attacked.

Gemma Lyons

Currently, in WHO’s Eastern Mediterranean Region, half of the 22 countries are experiencing an acute or protracted emergency. On top of this, we are faced with the worst refugee crises the world has ever known. Today, there are 65 million displaced people globally. And while the Western media spent much of 2016 broadcasting the European refugee crisis, most displaced people are actually being hosted within the Middle East.

Therefore, most refugees are being accommodated in countries with already-stretched healthcare services. So access to treatments, particularly cancer facilities, is limited. The healthcare budget for each refugee is around $1,000 to $2,000, eliminating all access to expensive cancer treatments.2 And, in reality, many refugees do not access even basic services, due to the complexity of their living situation.

Mashal al-Kuraimi, a 25-year-old with liver cancer in Yemen told Al Jazeera: “Cancer patients in Taiz are waiting for either the shelling or the cancer to kill them.” 3

Consequently, the importance of palliative care in conflict situations and among refugee populations cannot be understated. UNHCR (The United Nations High Commission for Refugees) does not have sufficient resources to fund cancer treatments; therefore most cancer patients require palliative care.2 However, palliative care is usually not being addressed in these situations.

While there are some examples of good practice, such as in Saudi Arabia and Jordan, palliative care services are generally limited in the region. And most countries of the region rank poorly in the Global Atlas of Palliative Care and the Quality of Death Index. There are a number of reasons for this. Challenges for palliative care development in the region include: lack of policies and funding, cultural barriers, training and education, and a lack of access to opioids. Furthermore, in conflict situations, most attention is focused on trauma care, infectious diseases, and maternal and child health.

So what can be done to improve palliative care during conflicts? Fortunately, the topic is gaining momentum. WHO is working jointly with relevant partners to develop guidance and essential packages for emergency settings, including medications for pain management and essential devices.

For palliative care in emergency situations, training is required for staff and volunteers to provide psychosocial and spiritual support, and patients need improved access to opioids. Policy-makers and international organisations must work collaboratively to make this happen, and to reduce pain and suffering at the end of life, in already complex and difficult circumstances.

References

  1. Sahloul, E. Cancer Care at Times of Crisis and War: The Syrian Example. Journal of Global Oncology. Published online before print. August 31, 2016, doi:10.1200/JGO.2016.006189.
  2. Spiegel P, Khalifa A, Mateen FJ. Cancer in refugees in Jordan and Syria between 2009 and 2012: challenges and the way forward in humanitarian emergencies. Lancet Oncol. 2014;15(7):e290-e297. doi:10.1016/S1470-2045(14)70067-1.
  3. Al-Sakkaf N, What it’s like to be a cancer patient in Yemen today, Al Jazeera [accessed: 18 October 2016].

Links and further reading

Read more in this series on the EAPC Blog

 

 

 

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Transformational leadership: “Mary Potter” Palliative Care Centre contributes to improved quality of care and standards in Albania

NEW SERIES: HOSPICE AND PALLIATIVE CARE IN EASTERN AND CENTRAL EUROPE …

Irena Laska, Executive Director, “Mary Potter” Palliative Care Centre, Korça, and national palliative care trainer in Albania, launches our new series and puts the spotlight on Albania.

Irena Laska

The “Mary Potter” Palliative Care Centre offers hospice inpatient care, home care and education. It is also involved in lobbying and advocacy, fundraising and raising awareness to further develop this service in our country. Providing palliative care has been a challenge for the staff. Doctors and nurses were initially unfamiliar with the term ‘palliative care’, describing services for this category of patients as ‘worthless’. We can all provide palliative care, but the quality and standards of our services must become standardized for all people in need. This post explains our efforts to do this, both locally and nationally.

One of our greatest achievements to improve quality and standards is the Transformational Leadership training programme. After an initial training course in Brasov, Romania, we later implemented a similar programme in Albania. Thirty individuals applied for this program and 15 were selected to participate. For all participants, the training has provided a new and extraordinary experience. For many, it was the first time they had worked with a project proposal and this has helped them to understand their significance in developing palliative care in their respective regions.

How we began …

“Mary Potter” has offered services for the terminally ill since 1993 when a group of Catholic missionaries from the Little Company of Mary in London established the centre. In 2004, the missionaries transferred the management of the palliative care centre to Albanian staff while continuing to provide financial support. Initially, we provided only a homecare service but nursing staff soon began to develop education and training in palliative care.

The cathedral in Korça. (Picture Commons.wikimedia.org)

Education and training are crucial …

Thus, training was adapted to include assessment and treatment of pain, the use of opiates, as well as treatment of symptoms common to terminally ill patients. Doctors, and nurses took part in training courses, contributing to an improved understanding of palliative care among healthcare professionals. But despite our efforts, only a minority of local healthcare providers were knowledgeable about palliative care, leaving many patients and their families continuing to suffer. To increase knowledge more widely among health professionals, we sought collaboration with the Ministry of Health. This led to the creation of a memorandum between the “Mary Potter” Centre and the ministry, making training compulsory for all health professionals. Following accreditation from the National Accreditation Center for palliative care training, the number of motivated participants has further increased.

The training programmes were of high quality. The key message conveyed at the training is: ‘We provide palliative care, but quality and standards of this service should change and be the same for all people in need.’ As part of the training, participants have created groups of volunteers to begin offering palliative care; others have joined palliative care units in regional hospitals. We have also offered them workplace training.

As a national trainer in palliative care, I had observed that it was the nurses who maintained the closest relationship with patients. Therefore, in collaboration with other colleagues, I identified lecturers within the Nursing Departments to help begin integrating palliative care into standard curricula within these departments.

In the beginning, only foreign-language literature was available and lecturers had little or no experience with the sick to understand their individual needs. What developed was a five-day residential training course for lecturers that included lectures, practical experience and course materials in the Albanian language and allowed participants to share experiences of teaching palliative care during the academic year.

While education in palliative care was growing, the use of morphine for pain treatment continued to be a taboo among many healthcare staff. Many thought the drug should be given only in the last stages of disease so as not to create dependency; believing its use could lead to fatal side effects. Training development and reducing the taboos around palliative care have been essential to reducing the suffering of terminally ill patients and their families. “Mary Potter” staff have successfully shared their philosophy with 1,340 healthcare professionals across Albania, leading to the creation of palliative care centers and increased access to services across our country. But there is still much work ahead. Continuing education and training to prepare the leaders and empower them to make the difference in offering palliative care with standards and of high quality for everyone –  this is the future challenge for “Mary Potter” staff.

We envision carrying on the mission of the founding missionaries by ensuring dignity at the end of life by providing patients and their families with high-quality and compassionate services for many years to come.

Links

Read more posts about Palliative Care in Eastern and Central Europe – next week Alexander Wolf will be writing about developments in Ukraine . . .

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A day in the life of an editor – want to join in?

If you’ve ever fancied being part of a top palliative care journal, here’s your chance! Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, takes you behind the scenes of the EAPC’s official research journal and invites you to join the team as a screening editor.

Ivory towers, red pens, and a desire to disappoint … Is that your view of a day in the life of a journal editor? The truth is rather more prosaic (and positive) than that. In this blog, I am going to share some of what a journal editor does on a day-to-day basis, and hopefully persuade some of you that it might be interesting to join us at ‘Palliative Medicine’, the research journal of the European Association for Palliative Care (EAPC).

Palliative Medicine Paper of the Year award 2017

One of Catherine’s tasks at the 10thEAPC World Research Congress, held recently in Bern, was to present the Palliative Medicine 2017 Paper of the Year award. She is pictured here with author of the winning paper, Shane Sinclair, Associate Professor, Faculty of Nursing, University of Calgary, Canada.

My job as an editor is to read, think, and communicate how research in palliative care is disseminated to a varied international audience. The privilege and excitement of the job is to engage with new and innovative research from across the world, and then help share this with the widest possible audience. For this to happen we have to consider how best to curate our content, think what is most relevant to our readers, appraise submitted papers critically and analytically and try to best to meet our strategic objectives. This can be challenging, we are not infallible, and we can make unpopular decisions. It can be hard to look someone in the eye with a smile at the next EAPC conference when you both know that you have declined to publish his or her recent paper.

So what do I, as an editor, actually do? Well on a regular basis, I read research papers submitted to the journal and work with our screening editors to decide whether to send a paper for external review. We consider whether a paper meets the scope of the journal, if what is reported is novel and contributes to knowledge, and if the design and conduct of the study is appropriate, rigorous and well reported. If a paper goes for peer review we then choose experts in the field and invite them to review the paper. And then we choose some more. And a few more. And … Well, you get the picture. Suffice to say that finding willing, available and appropriate peer reviewers can take a little time.

Once the reviews arrive they are scored (for timeliness and utility), and a decision is made on the next steps for the paper, and communicated to authors and reviewers. This can involve additional editorial comments, often gleaned from the initial feedback of the screening editors before peer review. Then the fun bit, publishing an article that ‘hits the spot’, where the authors are delighted with the publication, reviewers recognise great work, and readers want to use the research to improve palliative care.

Might you want to join our team? We have two vacancies now for screening editors, to work with the team primarily on determining which papers will go for external review, and in selecting reviewers. Screening editors also contribute to the strategic direction of the journal, write editorials, curate content and act as ambassadors for the journal.

If you want to know more then take a look here and either have a chat with me or submit your application by the 15thJuly.

Links

  • Find out more and apply to become a screening editor here.
  • Contact Catherine Walshe by email.
  • Palliative Medicine.
  • Palliative Medicine’s Paper of the Year 2017, ‘Sympathy, empathy and compassion: A grounded theory study of palliative care patients’ understandings, experiences and preferences’ by Shane Sinclair et al., (Vol 3, issue 5, May 2017) is available to download from the journal website.
  • Read the latest blog posts from authors of Palliative Medicine Editor’s Choice articles on the EAPC Blog.
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Continuity of care in Brazil: Challenges to filling the gaps

Santiago Rodríguez Corrêa, a family physician and founder of ‘Estar ao Seu Lado – Cuidados Paliativos na Atenção Primária,’ Rio Grande do Sul in Brazil, explains why he’s feeling a little more optimistic …

“A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties.” Harry Truman.

Dr Santiago Rodríguez Corrêa

The excellent article ‘How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries’ 1  brings to the reader some concepts about continuity of care and integrated services and much information about five specific countries as well. A deeper reading brings the possibility to reflect on other countries, in this case – Brazil.

The concept of continuity of care and the three interrelated dimensions that comprise the concept expose the gaps and challenges of Brazil. It is possible to find difficulties in the three dimensions quoted in the article and some results are probably very similar to the daily routine of Brazilian healthcare professionals, people who need palliative care and their families. The fragmented fashion and the lack of informational continuity are situations that are common each day in Brazil. They are harmful to people who need palliative care, and their families, and merit further study in Brazil.

The Brazilian healthcare system is based on decentralization to offer care in multiple places. Yet, despite primary care being the entry point to better health care, access, correct evaluations and follow-up of patients are limited because of the lack of electronic data collection.

The article commented on the role of the general practitioner (GP) and other professionals. The role of GPs is very well defined and over the past few years journal articles have increasingly described the importance of their role in offering palliative care. However, even in palliative initiatives, such as those shown in the article, the GP has to assume this main role and this kind of attitude is necessary for all health professionals, whether or not they are part of a major palliative care initiative.

In Brazil, the role of the GP in palliative care is now being discussed with more frequency and emphasis. Now, is the time to think in terms of a large-scale proposal within the Brazilian public health system, to learn from the programmes that are already running and to find ways of improving access to palliative care for the large number of the population who need it.

Some examples could be quoted. Rio Grande, in the south of Brazil, is a good example of a public approach to palliative care. The project ‘Estar ao Seu Lado – Cuidados Paliativos na Atenção Primária’ and the secretary of ‘Coordination of Family Health Strategy and Municipal Health’ in Rio Grande are working together to expand the provision of palliative care to more people. The inclusion of palliative care in the Municipal Health’s Plan 2018-2021 to run an education programme and improve the skills of the other Family Health Strategy’s teams is a milestone and demonstrates their interest to provide access to palliative for all those who need it in this region. In the same way, the Palliative Care Work Group of the Brazilian Society of Family Medicine and Community is working hard to share this message with other colleagues, nationally and internationally.

The challenges to fill the gaps and provide the best continuity of care in Brazil are now well recognised by the professionals but meanwhile, sadly, the deficiencies are experienced by the people who most need palliative care. However, the recent increasing discussion brings some hope and the possibility to see the future through a glass half full.

Reference

  1. den Herder-van der Eerden M, Hasselaar J,Payne S,Varey S, Schwabe S, Radbruch L, Van Beek K, Menten J, Busa C, Csikos A, Vissers K and Groot M. How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries, Palliative Medicine, Volume: 31 (10): 946-955. First published online: March 1, 2017. Download a copy here.

Links and resources 

 

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Planning for the future with COPD – a new resource

Bettina Korn, End-of-Life Care Coordinator, St James’s Hospital, Dublin, and Deirdre ShanagherDevelopment Officer, Irish Hospice Foundation Dublin, Ireland, introduce a new booklet for people affected by chronic obstructive pulmonary disease (COPD).


Launch of the ‘Planning for the future with COPD’ booklet at the Irish Hospice Foundation offices, Dublin. March 2018. Left to right: Bettina Korn, Michael Drohan, Janet O’Leary, Marie Ritchie, Gerardine Malone, Bernie Murphy, Ann Murphy, Terri McDonnell, Pauline O’Neill, Peter McQuillan and Deirdre Shanagher. Photographer:Paul Sherwood paul@sherwood.ie 087 230 9096

This post responds to a blog post by Lea Jabbarian and colleagues on 23 April 2018 entitled: Advance care planning for patients with chronic respiratory diseaseOur blog post aims to highlight a patient and carer information booklet: Planning for the future with COPD. This booklet was developed by people with COPD, family carers and patient advocates. It was launched on 26 March 2018 in Dublin, Ireland.

A group of seven people with COPD and three family carers expressed an interest in determining information gaps in relation to planning for the future with COPD and in developing practical measures to fill this gap. This collaborative project between COPD Support Ireland and the Irish Hospice Foundation took place over an 18-month period.

Participants were at different stages of COPD and all family carers had cared for someone who had died from COPD. None of the participants had engaged in advance care planning (ACP) conversations before but expressed an interest in exploring this topic. During the initial two workshops, a shared understanding of ACP was developed and concerns were identified. The facilitated workshops were framed on a continuous process of engagement, reflection and feedback. Engagement was meaningful and emotional. The facilitators worked to create a space where attendees felt comfortable to explore, reflect and express their thoughts and feelings.

Some quotes from project participants about ACP:

“This is not a topic I like to talk about but I want to, I have to because I know what is ahead of me.”

 “I want to know and decide what happens next to me; how do you tackle this thing [COPD]? To look ahead, it’s important to know.”

During workshops, three to five participants developed the booklet content and design. Between the workshops, participants engaged with others and were facilitated to represent the views of the wider COPD community as well as other people in their lives. It became apparent that the term Advance Care Planning was not representative of how participants conceptualise this topic. Subsequently, the group chose to title the booklet Planning for the future with COPD. A draft booklet was prepared and went for nationwide consultation where patient and healthcare organisations reviewed it. Since its launch, the booklet has received widespread positive feedback.

This type of engagement with patients and carers provided a safe and creative space to explore the difficult topic of ACP. Participants shared powerful stories and supported each other in their journey of understanding the concept of ACP. Using a partnership approach in addressing this challenging topic created meaningful engagement. Patients and carers became active champions for ACP. The patients and carers involved clearly articulated the need for freely accessible information that helps them and their families to plan ahead and engage with their healthcare provider on this important topic.

Acknowledgements
With expressed permission of all participants. Written consent with the Irish Hospice Foundation.

Links and resources

 

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Understanding complexity in palliative care

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

Sophie Pask, PhD Student at Hull York Medical School, UK and Cathryn Pinto, Research Assistant at Cicely Saunders Institute, King’s College London, UK, explain the background to a longer article selected as ‘Editor’s Choice’ in the June 2018 issue of Palliative Medicine.

Sophie Pask

Cathryn Pinto

We are delighted that our recent paper ‘A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals’ has been selected as the ‘Editor’s Choice’ for the June issue of Palliative Medicine.

This qualitative research forms an important component of a larger programme of research called C-CHANGE, which aims to better understand how we can allocate resources in specialist palliative care based on patient and carer needs.

We often describe specialist palliative care patients as complex. But what does this mean? How can we adapt our care and services to better address complexity? We also need a better understanding of complexity to consider case-mix (classes of people with similar complexity or healthcare needs) and resource use in detail.

This research identifies sources of complexity and provides a framework that represents a comprehensive understanding of complexity for palliative care providers. We sought perspectives from patients, family members and professionals in the UK to develop a conceptual framework for complexity in specialist palliative care. We reached a total of 65 interviews to ensure that covered a variety of perspectives and incorporated suggestions from our patient and public involvement group. This was not an easy feat and we went through several reiterations to capture the perspectives from all stakeholders in a meaningful way. Our analysis used an existing theory (Bronfenbrenner’s Ecological Systems Theory) and we began to build up a picture of complexity that drew on Bronfenbrenner’s approach but adapted it for palliative care.

It was evident that complexity existed not only at a patient-level but also beyond the individual (for instance, in interactions between patients, carers and health professionals, because of service and systems, and more broadly because of societal perspectives and attitudes). Our framework also highlights the importance of time and the complexity of uncertainty and changing needs in a palliative care context.

We have learned a great deal about complexity in palliative care through undertaking this research and hope that others will also find this framework useful and applicable to their work. With a comprehensive understanding of complexity, we can capture patient-level complexity and better target the resources of specialist palliative care.

We would like to thank all the co-authors and our patient and public involvement group who helped to shape this paper.

This is independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12015). The views and opinions are those of the authors and do not necessarily reflect those of the National Health Service, the NIHR, the Central Commissioning Facility, NIHR Evaluation, Trials and Studies Coordinating Centre, NIHR Programme Grants for Applied Research, or the Department of Health.

Read the full article in Palliative Medicine

This post relates to the longer article, ‘A  framework for complexity in palliative care: A qualitative study with patients, family carers and professionals’, by  Sophie Pask, Cathryn Pinto, Katherine Bristowe, Liesbeth van Vliet, Caroline Nicholson, Catherine J Evans, Rob George, Katharine Bailey, Joanna M Davies, Ping Guo, Barbara A Daveson, Irene J Higginson and Fliss EM Murtagh published in Palliative Medicine 2018, Vol. 32 (6) 1078–1090. First published online February 2018.

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. (Remember that it’s free of charge to become an EAPC registered user).

Links

Read earlier Editor’s Choice posts on the EAPC Blog.

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What is the impact of dementia on the person’s family and who cares for the carers?

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 March/April issue of the European Journal of Palliative Care.

Dympna O’Connell

Jacinta Kelly

In an earlier post published on the EAPC Blog, we talked about our study to explore the dementia patient’s journey through a regional specialist palliative care service in the Republic of Ireland from the perspective of healthcare professionals. Here, we describe the dementia patient’s journey through the specialist palliative care services from the perspective of their carers.

A diagnosis of dementia not only impacts on the individual diagnosed, but also on the person’s carer. While the significance of the carer’s role in maintaining the wellbeing of a person with dementia is unquestionable, it carries with it immense physical, emotional, social and financial strain. Chiao et al (2015) explain that dementia is a progressive illness, which requires the carer to assume increasing levels of responsibility as the condition progresses. Therefore, the imperative to care for the carers is essential, both for the carers’ own wellbeing and so that they in turn can continue to provide and promote a good quality of life for the person with dementia.

Image courtesy of the Irish Hospice Foundation.

Six carers were interviewed in this study and they all valued the specialist palliative care services for assisting them to care for their loved one in the final stages of life. One carer sent us a thank you card for inviting her to participate in the study, explaining that in her ten years of caring for her loved one with dementia, it was the first time she had had the opportunity to share her story: the first time anyone had asked her how she was coping. This tells us that there is some way to go on the road to ‘caring for the carers’.

We hope that the findings from this study will encourage further debate from healthcare professionals working in dementia care and specialist palliative care settings.

References

Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review 2015; 62: 340–350.

Links

Contact Jacinta Kelly by email.

Read the full article in the European Journal of Palliative Care

This post relates to The dementia patient’s pathway through the Specialist Palliative Care services: Part 2’ by Jacinta Kelly and Dympna O’Connell published in the March/April edition of the European Journal of Palliative Care (EJPC) 2018; 25 (2), 93-95.

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.

Read Part One of this article, An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC) – Healthcare Professionals’ Experiences’ here.

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

 

 

 

 

 

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