Big step forward for chronic breathlessness

A world-first international consensus has agreed the term ‘Chronic Breathlessness Syndrome’. Miriam J Johnson and David C Currow explain

Miriam J Johnson

David Currow

Chronic breathlessness is common in people with advanced disease and can last for many years. Severe breathlessness is one of the most frightening experiences, often accompanied by fear of imminent death. Breathlessness often worsens as death approaches despite optimal treatment of their underlying condition(s), and affects every aspect of life. It is associated with prolonged and repeated health service use but yet remains largely invisible and poorly managed.

Despite evidence-based treatments, we often accept that breathlessness is simply part of our patients’ lives. Many of us practising today were not trained when evidence-based interventions existed and so often avoid asking about symptoms about which we think we can do nothing. By contrast, when we ask about chronic breathlessness, we also give patients permission to talk about their chronic breathlessness.

Wolfson Palliative Care Research Centre, Hull York Medical School, The University of Hull

We asked a group of breathlessness experts from around the world whether breathlessness persisting despite treatment of causative conditions should be delineated as a syndrome. A syndrome (literally “a running together,” from syn- “with” and dromos “a running, course”) is a constellation of clinical findings caused by an underlying disease(s). The clinical findings may constitute a range of symptoms and physical findings, or describe one symptom in a particular context(s).

The result is a new, world-first international consensus naming the syndrome of chronic breathlessness. Identifying this should raise awareness amongst patients, clinicians, service providers, researchers and research funders.

The agreed term, chronic breathlessness syndrome, is defined as breathlessness that persists despite optimal treatment of the underlying disease(s) causes disability. A stated duration of ‘chronic’ is not needed.

Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.

References

Johnson MJ, Yorke J, Hansen-Flaschen J, et al. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Respir J 2017; 49: 1602277 [https://doi.org/10.1183/13993003.02277-2016].

@ERSpublications
Chronic breathlessness syndrome: breathlessness and disability despite an optimally treated underlying pathophysiology.

Read more posts from Miriam Johnson and David Currow on the EAPC Blog.

More about the authors . . .
Miriam J Johnson is Professor of Palliative Medicine, Director of the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
David C Currow is Professor of Palliative Medicine, Faculty of Health, University of Technology Sydney, Ultimo New South Wales, Australia, and Associate Director of the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.

 

 

 

 

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Death and the Maiden – How women deal with grief

Ahead of International Widows’ Day tomorrow (June 23), Dr Anna Pedrosa Carrasco, Specialty doctor at Sir Michael Sobell House, Oxford University Hospitals, UK, talks about widowhood. This post is an introduction to Anna’s longer article published in the March/April issue of the European Journal of Palliative Care.

Anna Pedrosa Carrasco

Do you know what’s coming up tomorrow – 23 June 2017? On this day, International Widows’ Day is taking place for the 13th time, a global day recognised by the United Nations in 2010 to raise public awareness of the issue of widowhood.1 There is nothing new in the fact that women are more likely to experience a partner’s death than men. In fact, the total number of widows worldwide is estimated to be greater than the sheer magnitude of 258 million. 2 All the more alarming is the unfavourable situation that many women find themselves in after bereavement. In recent years, the United Nations has endeavoured to draw attention to this, which is summarised in the following statement:

“Absent in statistics, unnoticed by researchers, neglected by national and local authorities and mostly overlooked by civil society organizations – the situation of widows is, in effect, invisible.” 3

It is hardly surprising that partner loss indicates a major life stressor with a severe impact on the physical and mental wellbeing of the bereaved. Societies all over the world need to consider how to drive changes that will enable women to live in sound health and dignity after a partner’s death. In the definitions of palliative care, support of the family is consistently listed as a key responsibility, not only during a patient’s illness but also after death. Acknowledging the often-precarious situation of women after the loss of a partner, we – as professionals involved in palliative and hospice care – certainly ought to reflect on how we can contribute to improving the experiences of these women. But what do service providers need to know about bereaved women’s situations to identify those at high risk of complex grief issues? How can palliative care and bereavement services effectively provide support to women during this difficult time?

Despite grief being generally considered a highly individualised response to death, there is a consensus that social circumstances may exert a significant influence on its course. To scrutinise the role of the female gender in the social context of grief after partner loss, we searched the literature for relevant evidence resulting in our article in the European Journal of Palliative Care. For example, our findings suggest that women tend to display a more loss-focused behaviour than men while simultaneously they usually benefit from broader social networks that facilitate restoration-orientation. This advantage of social engagement, however, decreases along with age-related frailty and diminished social embedding. Furthermore, women who adopted a traditional role model and strongly depended on their partners exhibit worse bereavement outcomes.

We hope that our narrative literature review raises awareness of the delicate situation of bereaved women, explicitly pointing out social aspects that may affect the course of grief. It is intended to offer guidance to health and social care professionals to identify specific risk and protective factors in order to provide targeted and tailored bereavement support.

References

  1. The Loomba Foundation. International Widows’ Day, 2017. (Accessed 9 May 2017).
  2. The Loomba Foundation. The Global Widows’ Report 2015 – A global overview of Deprivation Faced by Widows and their Children. (Accessed 6 May 2017). Available here.
  3. United Nations. International Widows’ Day – 23 June. (Accessed 6 May 2017). Available here.

Read the full article in the European Journal of Palliative Care

This post relates to a longer article, Death and the Maiden – How women deal with grief’ by Anna Pedrosa Carrasco and Jonathan Koffman, published in the March/April 2017 edition of the European Journal of Palliative Care (vol. 24.2).

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 BEREAVEMENT, EAPC-LINKED JOURNALS, European Journal of Palliative Care | Tagged | 1 Comment

One hundred and forty-five countries signed the 1951 Refugee Convention: Why do refugees have limited access to quality health care and end-of-life care?

Continuing the Salzburg Questions series that encourages a global discussion about the key issues affecting palliative care.

On World Refugee Day today, 20 June, Dr Emmanuel Luyirika, Executive Director, and Shelley Enarson, Communications Consultant, both of the African Palliative Care Association, explore the fourth question in the Salzburg Questions that asks why refugees have limited access to quality health care and end-of-life care.

Dr Emmanuel Luyirika

The refugee crisis is reaching epidemic proportions globally with cross-border migration from countries in the Middle East, North and West Africa – especially Syria, Libya, Afghanistan, Nigeria, Gambia – and other refugees from the region entering Europe.

In Africa, the situation is no better.

During the month of May, Uganda received 2,000 refugees daily from South Sudan, and currently hosts about 1.2 million refugees from across the continent – making it the third highest refugee host country in the world.

This is happening in a country where the health system already falls short of meeting the needs of its citizens, with palliative care coverage still low.

Shelley Enarson

Other refugee host countries are facing similar challenges across Europe, Africa, Asia, and South America, as well as other regions of the world.

Influxes of refugees in some of the lesser-developed regions, such as Africa, are transitioning to neighbouring countries where healthcare systems are not well developed and are struggling to meet the need of their national citizens. The addition of refugee populations stretches these systems to near-breaking points within a context of already limited resources allocated to health services.

Refugees often find it easier to move to less developed countries because of limited immigration controls. More developed countries with more robust health systems are often more stringent in allowing in refugees, which keeps most refugee resettlement within lesser-developed countries.

This exposes refugees to healthcare services that are often not able to offer comprehensive care, including palliative care.

As a way of solving this problem, the UNHCR (UN Refugee Agency) donor countries and organisations working in refugee situations should ensure that palliative care is included in all emergency responses to limit the suffering that refugees with palliative care needs experience.

Patients at the Daadab refugee camp nurse their children in one of the wards in the camp, Dadaab. Kenya. August 2008. UN photo by Allan Gichigi/IRIN

Core to palliative care inclusion in emergency response services is a move towards the inclusion of palliative care into the Sphere Handbook, which serves as the gold standard for complex humanitarian emergency interventions. This Humanitarian Charter is regarded by implementing agencies, as well as bilateral and multilateral donors, as the “ethical and legal backdrop to protection principles” of refugees and other vulnerable populations (The Sphere Project, p. 6).

The inclusion of palliative care is included in a first phase of open online public consultation until 30 June 2017.

An inclusion of palliative care into the Sphere Standards could ideally lead to a broader allocation of palliative care funding as a mainstreamed priority in complex humanitarian emergencies globally.

Such a move would not only lead to an expansion of palliative care services as part of UHC objectives, it would also ensure its services and ethos impacts communities in situations of dire need, with lesser infringement on resource strapped health systems.

Links and further reading

Posted in ADVOCACY & POLICY, Palliative care in humanitarian crises, Salzburg Global Seminar Series | Tagged | Leave a comment

Refugees in palliative care: What do they need?

Continuing our series about palliative care in the context of humanitarian crisis. We look 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. 

Sonja Owusu-Boakye, Christian Banse and Friedemann Nauck, Clinic of Palliative Medicine, University Medical Center Göttingen, Göttingen, Germany, describe their research and interview study with patients and relatives with migratory backgrounds and professionals in the oncology/palliative care sector.

Sonja Owusu-Boakye

Friedemann Nauck

In our research, we learned that (specialist) palliative care of refugees can present particular challenges to all healthcare providers. In interviews, providers told us about patients who had embarked on their journey to Germany with very advanced diseases. The humanitarian situation in their home country was so intolerable that adequate health care could no longer be provided. Some patients were forced to leave their families behind. Often there was only enough money for one person to flee.

Christian Banse

We observed a difference between migrants with a secure (usually unlimited) residency status and refugees who are still in the asylum process, or who are threatened with deportation. Seriously ill refugees can be affected by various factors.

These factors can have several consequences for the physician-patient interaction:

 

 

 

  • Language can play a role in treatment communication: How is the patient processing the diagnosis? What are his/her needs? Is it possible to speak about imminent death? Was the patient previously aware that he/she was severely ill?
  • Traumata experienced in the country of origin and during flight may still be very present: What has the patient experienced? Is there a need for psychotherapeutic care?
  • Social welfare payments: Social welfare law in Germany stipulates that each council must pay for the health care of refugees. But how is the provision of payments organised? Which treatment measures are covered, and how quickly? What formalities must be met?
  • Life circumstances and acute crises of the patient: Has residency been regulated? Is the patient or his/her family threatened with deportation? What is the accommodation like? Are there family or friends who can support the patient?

Read more about the research project in this report

In Germany, there is currently no uniform procedure for financing health care for refugees. Instead, there are different solutions at state level, for example, the electronic Health Card (Bremer/Hamburger Model). Therefore, healthcare provision to refugees differs greatly in Germany. On the institutional side, we also observe a lack of guidelines and networks with, for example, local relief agencies to ensure appropriate care to refugees. We have found that refugees with severe diseases require not only health care, but also often have a substantial need for psychosocial care.

Our study has shown that people who have come to Germany encounter many helpful people who allow them to die with dignity. This is precisely why it is important to create better political and institutional conditions for care – and thus enable supporters to provide appropriate help.

You are welcome to contact us by leaving a comment at the end of this article or by emailing us at: Sonja Owusu, Christian Banse or Friedemann Nauck.

Links and further reading

  • Learn more about our research project on our website (available only in German).
  • PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies). For more information please email Joan Marston.
  • New PALCHASE Survey on palliative care in humanitarian contexts – interested in joining a community of practice? Read more about the survey and take part here.
  • If you’ve worked in humanitarian health care in the last two years, please complete this survey and add your voice to a global discussion on current practices and needs related to non-curative health care in humanitarian emergencies.

Follow the EAPC Blog for more stories in this series. We would be delighted to receive more contributions about palliative care in humanitarian crises. Please contact Avril Jackson if you would like to contribute.

Posted in ADVOCACY & POLICY, Palliative care in humanitarian crises | Tagged | Leave a comment

Equality of opportunity in academic palliative care: What’s the problem?

Dr Katherine Sleeman, NIHR Clinician Scientist at the Cicely Saunders Institute, King’s College London, UK

Katherine Sleeman

Is there a problem with gender bias in academic palliative care? This was the question I pondered at the 2016 European Association for Palliative Care (EAPC) World Research Congress in Dublin. Sitting in the audience, I was surrounded by women. But looking up at the Plenary stage, I saw mainly men. A tally of numbers of men and women speaking revealed that while most of the speakers in Free Communication sessions were women (these speakers are chosen anonymously on the merit of their submitted abstracts), the proportion of women fell dramatically for the Parallel sessions (invited talks, which are more prestigious) and even more so for the Plenary talks (the most prestigious of all). A quick Chi squared test showed that these results were unlikely to have occurred by chance. The leaky pipeline, a term used to describe the attrition of women as they progress in academia, seems to be a valid concern in palliative care.

We published these results in BMJ Supportive and Palliative Care 1 (by luck the publication date coincided with International Women’s Day), and promoted them widely. The response from fellow academics, both men and women, has been phenomenal. But most encouraging of all has been the response from the EAPC itself. While it might have been easy to ignore or dismiss the data, the EAPC has engaged wholeheartedly (for example, by inviting me to write this blog). I was delighted to learn from Christoph Ostgathe, Chair of the 2017 EAPC World Congress Scientific Committee in Madrid, that our data had been read and discussed within the EAPC. What’s more, changes to the abstract submission process have already been made such that information on gender will now be routinely collected, facilitating analysis of those submitting abstracts and those accepted for presentation.

Of course, monitoring the gender of abstract submitters only addresses the earlier stages of the ‘pipeline’. How do we improve representation of women at the highest level? We do not currently know the reasons for the small number of women giving Plenaries at EAPC. Self-selection, whereby women are more likely than men to decline invitation to give talks, has been described in other specialties. Reasons for refusals to give Plenaries at EAPC conferences should be explored, followed by introduction of steps to increase acceptance rates.

However, an alternative explanation for the low number of women giving Plenaries is bias, either conscious or unconscious. While it may not feel comfortable to address this question, it is essential that we do. Simple interventions have been shown to be effective in reducing bias. For example Scientific Organising Committees that are gender-balanced are more likely to invite women to give prestigious talks, and the EAPC must continue to ensure that this is the case.

Liliana De Lima, Executive Director of the International Association for Hospice and Palliative Care, receiving the Floriana Foundation Award from Dr Matteo Crippa at the 15th EAPC World Congress in Madrid. Liliana gave a plenary presentation on  ‘Progressing palliative care in low- and middle-income countries’.

The theme of the recent conference in Madrid was ‘Progressing Palliative Care’, referring to the progress we need to make both as a discipline and as an organisation. Fittingly, four of the six Madrid Plenaries were given by women, the largest proportion in recent years by some margin. We must hope that this is not a blip, but a sustained trend towards greater visibility of women. But we must also recognise that other biases may be present and these too need to be explored and addressed. For example, palliative care is a multidisciplinary endeavour but the majority of EAPC Plenary speakers over the past six years have been physicians. This is particularly the case for the biennial research congresses: all plenary speakers in 2012, 2014 and 2016 have been physicians.

Our patients will not be best served if only a proportion of the academic palliative care community is recognised for its work at the highest level. We have a duty to our patients to ensure equality of opportunity. The recognition and engagement with this issue, as demonstrated by the EAPC, is an encouraging and necessary first step.

Reference and Links

  • Sleeman KE, Koffman J, Higginson IJ Leaky pipeline, gender bias, self-selection or all three? A quantitative analysis of gender balance at an international palliative care research conference. BMJ Supportive & Palliative Care Published Online First: 07 March 2017. doi: 10.1136/bmjspcare-2016-001211.
  • Read more from Katherine Sleeman on the EAPC Blog.
  • Follow Katherine Sleeman on Twitter @kesleeman

Read more posts relating to the 15th EAPC World Congress in Madrid on the EAPC Blog.

 

Posted in 15th World Congress Madrid, ADVOCACY & POLICY, EAPC ACTIVITIES, SOCIAL MEDIA | Tagged | 2 Comments

Intangible values of palliative care

María Arantzamendi and Carlos Centeno of the ATLANTES Programme, Universidad de Navarra, Spain, explain the background to their longer article published in the March/April issue of the European Journal of Palliative Care.

 

“Thank you. She always said that you were her friend, that you really ‘saw’ and understood her.”

I heard these words a few minutes after Laura died . . .

María Arantzamendi Solabarrieta

We can all recall situations in which something profound has happened; something that cannot be touched but still experienced in a deep and meaningful way: i.e. ‘intangibles’. Love and truth, for example, are both intangibles, as are many of the values encountered in palliative care.

The experience of feeling cared for and being accompanied during the difficult road of advanced and terminal illness is much more than something that can be measured; it involves a mode of caring, a style of care, that reflects underlying core values. Our care must be given with compassion, attentiveness, gentleness, presence, hope and understanding.1 Intangibles that preserve a patient’s perceived dignity – thereby supporting the individual’s perception of ’self’, can be damaged as a result of their illness and, at times, due to inappropriate attention.

Carlos Centeno

We have found that patients and their families appreciate these intangible values of palliative care and, despite being non-material in work and discussion with families and patients, these values become almost palpable through expression in words and actions. 2 After seeing her relative pass away, one woman wrote, ‘I would like to be lucky enough to be cared for in this way … in my final moments.’ They feel human warmth and proximity, the safety of an environment in which they can lose their sense of fear and feel valued as unique persons. Letters of gratitude from relatives show how humanity and compassion are intensely appreciated, 3 and these documents testify to the transformative power of palliative care.

Palliative care is growing globally, adapting to very different cultures and settings. Though it may be referred to differently in distinct settings, the intangible aspects of palliative care remain common to all. We should not accept new definitions that do not recognize the most hidden, intangible part of our work, as it is essential in appreciating and understanding palliative care.

If we want to explain better to society and other health professionals what palliative care is, we need more than just a good definition. We need to give voice to patients’ accounts, which have immense power and ability to show the intangible values of palliative care. And in order to better explain palliative care, palliative care education for nurses and physicians is a necessary component.

As Saint-Exupéry wrote, “The essential is invisible to the eye.’ 4 In palliative care, we possess a treasure chest of essential values, but one that is often hidden. The ATLANTES Research Programme aims to ensure that these intangible elements of palliative care are recognized and disseminated in society and among professionals.

Links

References

  1. Larkin P. Listening to the still small voice: the role of palliative care nurses in addressing psychosocial issues at end of life. Prog Palliat Care 2010; 18: 335-340.
  2. De Simone G. if you want to understand the invisible, look carefully at the visible. Cur Opin Support Palliat 2015; 9: 355-356.
  3. Centeno C, Arantzamendi M, Rodríguez B, Tavares M. Letters from relatives: a source of information providing rich insight into the experience of the family in palliative care. J Palliat Care 2010; 26: 167-175.
  4. De Saint-Exupéry A. The Little Prince. Orlando, Florida: Harcourt Inc. 2000.

More about the authors . . .
Carlos Centeno is Titular Professor in the Faculty of Medicine at the Universidad de Navarra, principal investigator on the ATLANTES Programme: Human Dignity, advanced disease and palliative care, and Director of the Palliative Care Department of the Clínica Universidad de Navarra.
María Arantzamendi Solabarrieta is researcher on the ATLANTES Programme.

Read the full article in the European Journal of Palliative Care
This post relates to a longer article, Intangible values of palliative care’ by María Arantzamendi and Carlos Centeno, published in the March/April 2017 edition of the European Journal of Palliative Care (vol. 24.2).

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 EAPC-LINKED JOURNALS, European Journal of Palliative Care, PATIENT & FAMILY CARE | Tagged | Leave a comment

Dying at home – the final challenge for migrants?

Continuing our new series about palliative care in the context of humanitarian crisis. We look 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.

Today, Johannes Bükki and Piret Paal talk about their recent study on migrants’ needs in a palliative setting, Hospice Care Da Sein in Munich, Germany.

Johannes Bükki

At the time we started our study on palliative care in patients with migration background, there was a lot of discussion on culturally sensitive care. Healthcare staff expressed little self-confidence in providing care to migrants,1 they were just the ‘others’ with exotic names and needs. As a long-standing provider of hospice and palliative care to migrant patients, we are often asked questions about Muslim funeral rites, how to discuss end-of-life care with Russian immigrants, how to communicate with the elderly Greek patient who has forgotten his German, or how to support the Iraqi family who are refusing any help. Each of these examples may be explained by ‘culture’. Thus, using ‘culture’ to classify individuals may help to draft checklists and guidelines for culture-sensitive care; however, such stereotyping is a serious error as wide heterogeneity has been observed even within cultural groups. 2 Therefore, we started out by designing a qualitative study to map preferences and views of the patients themselves. To avoid selection bias, non-migrant, native German patients were also included.

Piret Paal

The first serious doubts about ‘culture’ arose when the interviews started. We could not believe how blurred the distinction between immigrants and natives was – fully integrated citizens of Munich were recalling a childhood abroad, and repatriates from former Soviet countries had indeed been members of the German minority back there. Thus, who was a migrant or, to be more precise, which of the elements of ‘culture’ did determine a patient’s healthcare behaviour? And, finally, how could we develop recommendations if even the starting points were that unclear?

To be honest, we were not able to answer any of these questions completely. From February to October 2016, 37 qualitative interviews were conducted. Patients’ eagerness to participate was astonishing. Across the entire population we detected a limited understanding and knowledge of palliative/hospice care and a suppression of the term ‘end-of-life’. Issues obviously specific to migrants were that both access to health care and survival were generally worse in their country of origin; that altered identity and language were affecting them at practical and emotional levels, and that ‘being a migrant’ might remain overlooked in the absence of explicit signs such as poor language skills, a foreign name or exotic looks.

What we definitely could confirm was that migrants provided narratives of a ‘double home’ experience. To avoid unease and to address hidden needs, we suggest that it would be beneficial to ask patients about their ‘home’. Patients might claim ‘home’ as being in Germany, but their body language – silence, tears, anxiousness – told a different story.

When ‘home’ means more than one habitat, specific concerns (for example, homesickness or the wish to be buried at home) may need special attention from caregivers. 3

References

  1. Milberg A, Torres S, Agard P. Health Care Professionals’ Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study. PLoS One. 2016; 11(11): e0165452.
  2. Ceuterick M, Vandebroek I. Identity in a medicine cabinet: Discursive positions of Andean migrants towards their use of herbal remedies in the United Kingdom. Social Science & Medicine. 2017; 177: 43-51.
  3. Bray Y, Goodyear-Smith F, Gott M. Transnationals’ experience of dying in their adopted country: a systematic review. Journal of Palliative Medicine. 2015; 18(1): 76-81.

Links and further reading

Follow the EAPC Blog for more stories in this series.

Posted in ADVOCACY & POLICY, Palliative care in humanitarian crises | Tagged | 2 Comments