Doctors, nurses; do you want to die the way your patients die?

WHEN THE TIME COMES TO TELL OUR STORY, WHAT WILL WE SEE?

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

Today, on International Right to Know Day (28 September) Dr Bruce Chernof, President and Chief Executive Officer of The SCAN Foundation, California, USA, explores the seventh question in the Salzburg Questions that asks: Doctors, nurses; do you want to die the way your patients die?

Dr Bruce Chernof

Around the world, healthcare providers are trained to be objective, rational, and clinical at the bedside. Long white coat, white dress, white smock, maybe a white hat – they are just signifiers, tropes, costumes in a performance, where we are the ‘good guys’ here to right wrongs and cure the sick. And of course, following the Hippocratic Oath: ‘First, do no harm.’ So this is what we do, day in, day out, with dedication and compassion, but always through that dispassionate clinical lens. Until . . .

When the tables are turned, and the provider is the patient, what seemed like an uplifting virtuous drama reads much more like a comedy, or worse, a tragedy. It is time for all healthcare providers to take a deep, introspective look at our practice. Are we caring for the whole person or simply going about the business of treating patients? Despite all of our progress to transform healthcare delivery to make it more holistic, it remains utterly biased toward the antiseptic and technical aspects of treating patients. Healthcare prioritises safety and cure above all else, yet in our own lives we are far more likely to prioritise autonomy, dignity, and happiness. We have an enormous number of technical measures to track the quality of medical services, yet almost no measures for quality of compassion or respect. All healthcare providers secretly pray for quality of life for ourselves, balanced with technical quality of care. So here is the little secret I have learned over three decades: all our patients want the exact same thing.

We need to break the bonds both of incrementalism and lofty strategic planning that seem to be the brick walls and iron bars that serve as our stage’s proscenium and backdrop. Endless, minute Plan-Do-Study-Act cycles, policy reforms for one more new payment code, or dramatic 10-year global targets may be part of the solution, but these are not the answer.

We need to commit to delivering care to every person and every family exactly as we would want to be treated. For as we all know, autonomy and dignity are not delivered through the sharp prick of an IV catheter or a light blue gown that doesn’t quite close completely at the back. When the time comes to tell our story, what will we see? Virtuous drama with an uplifting ending? Comedy of errors? Or simple tragedy? The choice is ours.

Links

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Side events at 67th WHO European Regional Meeting highlight need for research and collaborative advocacy in palliative care 

In yesterday’s post, representatives from the International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Hospice Palliative Care Alliance (WHPCA), explained how they worked hard, together with other organisations, to ensure that palliative care had a strong voice at the recent World Health Organization European Regional Meeting in Budapest.

Today, Dr Katherine Pettus, Advocacy Officer of the IAHPC, explains the impact of the side events at the meeting and the need for more research and collaborative advocacy.

Dr Katherine Pettus

Several stimulating Technical Briefings and side events at RC67, with bearing on access to palliative care, included the following:

‘Ensuring positive outcomes for health at the country level’, a discussion of the benefits of Universal Health Coverage in resource-limited countries; ‘Responding to antimicrobial resistance (AMR): lessons learned from multidrug-resistant tuberculosis; ‘Technical Briefing on the Investment case for Sustainable Development Goals (SDGs)’, and ‘Investment for health and well-being: Strategies and practical examples.’ 1

Although the links between AMR, TB, and palliative care are not immediately obvious to health policymakers at the moment, the health system need for palliative care will spike astronomically if health systems don’t solve the growing problem of AMR. With regard to TB, the World Health Organization is updating its guidance and guidelines for palliative care in TB. The briefing on the investment case for the SDGs presented evidence that governments could realize a 14/1 return on public health investments. Although policymakers see most of this funding going to prevention, advocates for palliative care as an essential service under UHC must also present evidence for the return on investment (ROI) for palliative care. One attractive approach, which was beautifully expounded at the Investment for Health and Wellbeing Side event, was the Social Return on Investment (SROI) model.

This public health approach studies health and wellbeing investments that produce returns in dimensions other than profit margins. It emphasises value-driven investments that are socially just and inclusive. In the words of report author, Christoph Hamelmann, “Optimizing social returns brings governments closer to realising the right to health, the highest attainable standard of health – attainable in the sense of global and local solidarity. Investments that benefit those who need them most.

What are the top three enablers to drive investment for health and well-being in your country?

What we need – research and collaborative advocacy

Advocates need research to make the case that policymakers can apply the Social Return on Investment (SROI) model to support publicly funded palliative care under UHC. The current model: private funding by financially strapped charities and faith-based organisations, is unsustainable in the face of the epidemic of non-communicable diseases, including the dementias, and the demographics of ageing, which are also affecting resource-challenged countries. One SROI palliative care research project is ‘Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program)’.

What I heard in Budapest was that policymakers need the evidence for what providers already know: that the clinical, psycho-social, and spiritual support they give patients and caregivers through life-limiting illness, improves family, community, and ultimately national health outcomes in multiple domains. Collaborative advocacy is also required to ensure that palliative care is included in the spectrum of primary care and public health in the revised Alma-Ata Declaration to be unveiled at next year’s 40th anniversary celebrations.

EAPC researchers could contribute by providing the preliminary evidence to present at the next WHO Regional meetings next year in Rome, and 2019 in Copenhagen.

Reference

  1. Health Evidence Network Synthesis Report 51 ‘Investment for health and well-being: a review of the social return on investment from public health policies to support implementing the Sustainable Development Goals by building on Health 2020.’

Links

  • If you missed the first part of this post, click here.
  • For more posts from Katherine Pettus, follow her regular Policy and Advocacy page in the IAHPC Newsletter.
  • You can read more posts on policy and advocacy on the EAPC Blog.

 

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Advocating for palliative care at the 67th WHO European Regional Meeting in Budapest

In a special two-part post, Dr Katherine Pettus, Advocacy Officer of the International Association for Hospice and Palliative Care (IAHPC), and Dr Julie Ling, Chief Executive Officer of the European Association for Palliative Care (EAPC) and Vice-Chair of the Worldwide Hospice Palliative Care Alliance (WHPCA), describe efforts to ensure that palliative care gets a strong voice at the World Health Organization. 

Advocating for palliative care: Left to right, Dr Katherine Pettus, Dr Gábor Benyó and Dr Julie Ling

As part of a delegation of palliative care advocates, we attended the 67th meeting of the European Regional Committee of the World Health Organization (WHO), which took place 11 to 14 September in Budapest. Dr Gábor Benyó, Vice President of the Hungarian Hospice-Palliative Association, also participated as a member of the IAHPC delegation. The WHPCA and IAHPC were invited to send representatives as both are non-governmental organisations or NGOs (known as ‘non-state actors’ in UN language) in official relations with the WHO. Representatives from other NGOs were also in attendance.The WHO encouraged us all to work together to produce statements on various aspects of the agenda. Consequently, some statements were supported by as many as ten separate organisations.

The newly elected WHO Director-General, Dr Tedros Adhanom Ghebreyesus from Ethiopia, presided over most plenary sessions and some closed ministerial sessions. Since Dr Tedros has defined himself as an advocate of Universal Health Coverage (UHC), our delegation wanted to ensure the oral statements prepared by NGOs in official relations with WHO gave palliative care as much airtime as possible under agenda items relating to UHC and other relevant issues. Although the World Health Assembly passed a historic resolution on palliative care in 2014, it seems that many member states and even officials of the WHO are largely unaware of the cross-cutting and economic benefits of the public health model of palliative care. The impact of palliative care affects so many other items on their policy agendas but its omission indicates that we still have work to do.

The IAHPC and WHPCA worked hard to highlight palliative care on the agenda and submitted jointly both written and oral statements. We also worked with other organisations to ensure that palliative care was included in relevant statements including: the International Federation of Medical Students, WONCA (World Organization of Family Doctors), the World Federation of Occupational Therapists, the European Public Health Alliance, Center for Regional Policy Research and Cooperation, among others. These oral statements related to specific agenda items including the 2030 Agenda for Sustainable Development, Migrant and Refugee Health, Access to Medicines, Communicable and Non-Communicable Diseases, and Sustainable Workforce Development. A priority was to ensure that the draft concept note towards WHO’s Thirteenth General Programme of Work 2019–2023 included palliative care under the spectrum of UHC services. The language in the current draft mentions only “curative and rehabilitative care”, reflecting an older WHO definition of UHC.

Our joint oral statement on this topic, directed to WHO Director-General, drew attention to the WHO’s more recent definition of Universal Health Coverage in its Health Financing for Universal Coverage Page which states, “Universal health coverage (UHC) means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.” While this requested correction to the General Programme of Work might seem like a technicality, governments have no obligation to draft the national necessary policies and budgets to cover palliative care unless the text of multi-lateral documents contains the agreed language flagging palliative care as an essential service.

Leave no one behind

Collaboration between otherwise relatively weak NGOs is essential for advancing the global health agenda in the 2030 Agenda for Sustainable Development, whose tagline is ’Leave No One Behind’. Palliative care pays special attention to those ’left behind‘: first, by the healthcare system, as patients and families struggle with the pain and other symptoms associated with life-limiting illnesses, and also by their economic situation, as they may also struggle with debt incurred by buying (possibly) futile treatment and expensive medication. In countries without universal health coverage, such catastrophic, out-of-pocket health-related expenses can drive patients and their families into a ‘medical poverty trap’. Our delegation promoted the argument that well-trained, publicly funded, community-based palliative care teams such as those in Uruguay, could prevent this descent into the medical poverty trap and promote sustainable development in the framework of Agenda 2030. The WHO member states expressed deep concern about the impact of the cost and availability of essential medicines and discussed the issue of joint procurement and compulsory licensing.

Next year’s Regional Meeting will be in September in Rome. We would love to have a stronger IAHPC/WHPCA delegation to ensure that palliative care has a voice in the World Health Organization.

Links

  • For more articles from Katherine Pettus, follow her regular Policy and Advocacy page in the IAHPC Newsletter.
  • You can read more posts on policy and advocacy on the EAPC Blog.

Look out tomorrow on the EAPC Blog when Katherine Pettus will describe some of the side events that have a bearing on access to palliative care.

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End of life care communication training for generalists: Improvements in showing empathy and discussing emotions, but more effective in simulated patient encounters than real ones

Dr Lucy Selman, Research Fellow (Qualitative Research in Randomised Trials), the University of Bristol, UK, explains the background to a longer article published in the Journal of Pain and Symptom Management.

Dr Lucy Selman

In a systematic review published recently, we identified 153 communication skills training interventions for generalists in end of life care. In randomised controlled trials, training improved showing empathy and discussing emotions in simulated interactions (i.e. with actor patients), but evidence of effect on clinician behaviours during real patient interactions, and on patient-reported outcomes, was inconclusive.

The global increase in the proportion of older people and length of life means providing end of life care is now increasingly the responsibility of generalist as well as specialist palliative care providers. But many clinicians find communicating about end of life issues challenging: how do you best discuss imminent mortality, limited treatment options, what to expect when you’re dying, or a patient’s preferences for end of life care? While research in clinical communication has grown in recent years, there is little consensus regarding optimal training strategies and the most effective teaching methods.

As part of a study into generalist palliative care education, we conducted a systematic review on communication skills training for generalist end of life care providers. We knew that most studies measured effectiveness using clinicians’ own assessment of their confidence and competence, neither of which necessarily translates into changed behaviour or patient benefit. We therefore pooled the statistical results from randomised controlled trials (RCTs), to examine the effect of training interventions on patient-reported outcomes and staff behaviours.

Key findings

  • Overall, 160 studies evaluated 153 different training interventions.
  • 27 per cent of studies used a controlled design (e.g. compared trainees with people who did not receive the training), 13 per cent randomised participants.
  • Only 6 per cent of studies assessed the impact of staff training on patient or family outcomes.
  • Reporting and methodology were often weak; we developed a CONSORT statement supplement to improve future reporting and encourage more rigorous testing.
  • Of 160 studies identified, 19 were RCTs assessing the effect of communication training for clinicians on patient-reported outcomes and/or clinician behaviours in either real or simulated encounters with patients.
  • There was a significant effect of training on showing empathy and discussing emotions in simulated interactions (i.e. with actor patients), but evidence of effect on clinician behaviours measured during real patient interactions was inconclusive (Figures 1 and 2).
  • The two interventions with effects on showing empathy in real patient interactions included feedback on a recorded interaction.
  • Evidence regarding the effect of training on patient-reported outcomes or experiences (anxiety, depression, perceived empathy and satisfaction with communication skills) was inconclusive.

Figures 1 and 2

 

Conclusions
Training generalist staff in end of life care communication skills can improve their ability to show empathy and discuss emotions, and the use of feedback on a recorded patient interaction can be especially effective. However, we found that the effects of training on clinicians’ behaviours during simulated interactions are not reflected as strongly in their behaviours when interacting with real patients. More research is needed to understand this intriguing finding. Few studies assessed the effect of training clinicians on the outcomes or experiences of the people they care for. While this is what we expected, it is nonetheless disappointing and should be rectified in future research.

References
Selman et al. The effect of communication skills training for generalist palliative care providers on patient-reported outcomes and clinician behaviours: a systematic review and meta-analysis. Journal of Pain and Symptom Management. September 2017 Volume 54, Issue 3, Pages 404–416.e5

Brighton et al. A systematic review of end of life care communication skills training for generalist palliative care providers: research quality and reporting guidance. Journal of Pain and Symptom Management. September 2017 Volume 54, Issue 3, Pages 417–425

Brighton et al. End of life care communication skills training for generalist palliative care providers: a systematic review [protocol]. PROSPERO 2014:CRD42014014777.


More about the author

Dr Lucy Selman is a Research Fellow at the University of Bristol. Her research focuses on communication, decision-making, and psychosocial and spiritual aspects of palliative and end of life care. Follow her on Twitter at @Lucy_Selman

 

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The experience of spiritual pain for dying migrants away from birth country

New series: Posters from the 15th World Congress of the European Association for Palliative Care

Poster presentations are an essential cornerstone of every EAPC Congress – this year in Madrid more than 900 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world. If you were not able to attend the congress in Madrid, now’s the chance to see some of the posters close up and to enter into discussion with the contributors . . . 

Dr Yvonne Bray, Academic Coordinator and Lecturer, Palliative Care, Department of General Practice and Primary Health Care, Auckland, New Zealand, explains the background to her poster: ‘The experience of spiritual pain for dying migrants away from their birth countries’.

Dr Yvonne Bray

Migrants bring cultural expressions, rituals and traditions from an identity developed in their birth country to their adoptive country. When aspects of historicity and life meaning, culture and religion are not recognised and acknowledged in settling into a country, spiritual pain in end of life may result.

The stories of the migrants in this research project, as they reflect in end of life, illuminated their possession of a new hybrid identity and their inner ethnic and cultural identity, which were not always harmonious. In this article, I would like to focus on the group of migrants who experienced dissonant feelings and spiritual distress as a result of concealing their different cultural expressions brought from homeland in their everyday living. Their feelings of being different affected their sense of belonging in an adoptive country.

Hemani was of Indian ethnicity, Hindu by religion, she drew the picture of exclusion with her words “if you saw someone and said ‘Hi’ they don’t say hello back to you.” Her disappointment with this new world could be detected as her need to be included, supported and acknowledged in this new country, was rejected.

Raymond was from a Chinese ethnicity and Buddhist religion, and he expressed sadness that he was in a place, not of choice, but out of duty to offer his children the best future as a parent. Both Hemani and Raymond displayed physical and cultural expressions in appearance, speech, beliefs, values, cultural approaches to life and religious affiliation, which were different to the dominant (European) population group of western ethnicity in New Zealand. For both these migrants, their bond with country of birth was strong and represented their home community that they now wanted around them in end of life. Living with difference now became a longing for both of them to be back in their birth country.

As their life review continued with impending end of life, they reminisced like all dying people but pondered their migration decisions, loss of dreams of going home and savoured the good memories of ‘homeland’. These represented significant losses for them. Bowlby (1977) in his attachment theory described “the propensity of human beings to form affectional bonds to others” (p. 201), and to places, things and other living creatures. Unwilling separation in the attachment can lead to a perception or reality of ‘aloneness’. The intense emotions that arise as a result of disruption result in sorrow. The ‘continuing bonds’ model of grief depicts a person who is suffering a loss and holding on to what is lost with a degree of unresolved grief feelings (Silverman and Klass, 1996).

In their efforts to resolve their feelings of aloneness, grief and sadness, Hemani and Raymond turned their attention in the time left before end of life to enacting continuity with their motherland through their children. Conveying dying wishes and remembrance through acts of cultural legacy were also a part of this wish. For migrants, finding belonging is fundamental to settling in their adoptive country and achieving spiritual peace in end of life.

References

Bowlby J (1977). The Making and Breaking of Affectional Bonds. British Journal of Psychiatry 130: 201 – 210.

Silverman P and Klass D. Introduction: What’s the Problem? In: Continuing Bonds. New Understandings in Grief. D. Klass D, Silverman P and Nickman S (eds). Washington: Taylor and Francis, 1996.

Acknowledgement
I wish to acknowledge the support and time that Professor Rod MacLeod has afforded my research work in this topic. As palliative medicine specialist at a hospice in Auckland, his clinical perceptions brought new awareness to the discussion.

Links and further reading

Submit your abstracts now . . .
10th EAPC World Research Congress, Bern, Switzerland – 24 to 26 May 2018. Submit your abstract now.   Closing date:
15 October 2017.


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What happens to palliative care in times of mega disaster?

New series: Posters from the 15th World Congress of the European Association for Palliative Care

Poster presentations are an essential cornerstone of every EAPC Congress – this year in Madrid more than 900 posters were on display representing the scientific rigour and commitment of people involved in palliative care from across the world. If you were not able to attend the congress in Madrid, now’s the chance to see some of the posters close up and to enter into discussion with the contributors . . .

Here, Dr Sunita Panta from Nepal explains the background to her poster: ‘Limitations in Chronic Pain Management and Efficacy of Alternative Modalities during Mega Disaster in an Underdeveloped Nation’.

Dr Sunita Panta

Anyone who works in a low-income country with few palliative care services will be acutely aware of the difficulties and challenges that confront us daily, but when your country is also prone to earthquakes, or other natural disasters, the challenge is even greater. My poster describes the unique difficulties and obstacles that we faced when disaster struck our country.

For the past 17 years, I have been working in a tertiary military hospital, Shree Birendra hospital in Kathmandu, Nepal, as an anesthesiologist. Palliative care in my hospital started with pain management for chronically ill patients. Later, with the establishment of an oncology ward, other symptoms such as nausea, vomiting, constipation, loss of appetite, lack of sleep, anxiety, and depression demanded a palliative care approach in the hospital. A pain management clinic was started for outpatients with cancer, prolapsed intervertebral discs, migraine, fibromyalgia and post herpetic neuralgia, based on the World Health Organization pain ladder treatment principles.

Opioids were prescribed supplemented with adjuvants such as acetaminophen and non-steroidal anti-inflammatory drugs with a numeric rating scale of 0-11 as a guide. The clinic was run on a weekly basis but the opioid prescription was limited to five days owing to hospital regulations. Fortunately, we were able to extend the prescription of morphine for a week with proper documentation and later the pain clinic was also extended to twice a week. Oral morphine in tablet and syrup form became the drug of choice for chronic cancer pain. Despite side effects such as nausea, constipation and drowsiness, patients were able to eat well, sleep well and carry out their daily activities, thus improving the quality of life.

The Nepal earthquake in 2015 led to a surge of casualties in my hospital and other negative outcomes. Chronic pain patients were discharged and were deprived of prescribed opioids. The hospital was partially damaged and the acute wards had to be shifted into tents. Because of lack of space and personnel, the pain clinic could not function and continuous aftershocks prevented the patients from coming to the hospital.

Patients resorted to alternative modalities including over the counter drugs, vitamins, herbal medications supplemented by yoga, massage, meditation and traditional remedies such as tiger tattoos to stop the spread of herpes zoster lesions on the body. But most of the alternative methods were less effective than opioids and had more side effects. The pain clinic re-opened two months later but by now we had lost many of our patients and some were reluctant to discontinue their alternative medication and restart the chronic pain therapy.

Nepal is a low-economy disaster-prone country and in dire need of palliative care. During disasters, mass-casualty management policies should have provision for palliative care too. There should be better communication so that patients are informed about other sources of pain management and palliative care treatment. Regional and international medical teams assisting in disasters should come prepared to provide pain management and palliative care along with acute trauma care.

Links and resources

10th EAPC World Research Congress, Bern, Switzerland – 24 to 26 May 2018. Submit your abstract now (closing 15 October 2017.

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The taming of the chameleon – guidance on Conducting and REporting DElphi Studies (CREDES)

This month’s Editor’s Choice from Palliative Medicine . . .

Dr Saskia Jünger, senior research associate at the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (ceres), Germany, explains the background to her longer article selected as ‘Editor’s Choice’ in the September 2017 issue of Palliative Medicine.

Dr Saskia Jünger

The Delphi technique1 is widely used for the development of guidance in palliative care, having an impact on decisions with relevance for patient care. Having been involved in the realisation of diverse international consensus-building processes using the Delphi technique – either as the coordinator or as a co-researcher – I have had the opportunity to witness the power of this method for the production of scientific knowledge in palliative care, and I have come to value its fascinating nature.

Due to its methodological versatility, the Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. This characteristic may have contributed to a certain arbitrariness regarding its application: “In their enthusiasm, some analysts have urged Delphi for practically every use except cure of the common cold.”

However, the credibility of a Delphi study depends on the rigour of its implementation. We need to be mindful of this when using the technique since any decisions made as a result of a Delphi study may impact on clinical practice. The technique is widely applied in palliative care research, e.g. for the development of clinical guidance and standards for service delivery; health policy recommendations; for curriculum development; or for the identification of quality indicators. Therefore, a sound study conduct, as well as transparent reporting of methodological details and (interim) results, is key for the reliability of the resulting ‘product’. While some guidance had been proposed in the literature for enhancing the quality of Delphi studies, clear recommendations and a reporting standard for their publication had not been available. This motivated my co-authors and me to examine more systematically the use of the Delphi technique for the production of consensus, knowledge, and guidance on good clinical practice in palliative care.

“The Delphi technique reminds me of a chameleon; its design can be flexibly adapted to diverse research needs. “
(Photo courtesy Shobhan Tudu via Wikimedia Commons).

In our systematic review, we found substantial variation about how thoroughly studies were conducted and how transparently these were described in the published articles. In particular, the crucial moment between two Delphi rounds – what happens with the outcomes of the previous round and how these inform the preparation of the next survey round – was not always clearly set out. However, we also identified examples of good practice among the studies included in our review. These were encouraging models of how to design and present a Delphi study, even in view of restricted time, funding, or the word limits of scientific articles.

Our findings inspired us to propose a standard for Conducting and REporting of DElphi Studies (CREDES). We hope that the recommendations can serve as a guide for researchers undertaking and publishing Delphi studies, as well as for reviewers and journal editors when evaluating the quality of the study design and the transparency of reporting. It was a particular honour for my co-authors and me that our guidance was included in the reporting guideline database of the Equator Network.

References and Links

 

Read the full article in Palliative Medicine . . .

This post relates to a longer article, ‘Guidance on Conducting and REporting Delphi Studies (CREDES) in palliative care – recommendations based on a methodological systematic review’ by Saskia Jünger, Sheila Payne, Jenny Brine, Lukas Radbruch and Sarah Brearley, published in Palliative Medicine, Vol 31 (8): September 2017, p684-706. First published online: February 13, 2017; DOI: 10.1177/0269216317690685.

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 free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog

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