The Voice of Volunteering – supporting and learning from the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care

Ros Scott and Leena Pelttari (Co-chairs of the European Association for Palliative Care (EAPC) Task Force on Volunteering in Hospice and Palliative Care) and Steven Vanderstichelen (member of the task force steering group) explain.

Clockwise: Leena Pelttari, Ros Scott and Steven Vanderstichelen.

It seems no time at all since the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care ‘Voice of Volunteering’ was launched at the EAPC 15th World Congress in Madrid in May 2017. Eighteen months on, we are delighted by the response and that people in so many countries around the world have been inspired by the charter message: to advocate for the support, recognition, promotion and development of volunteering in hospice and palliative care.

More than 2,500 people from 50 countries – from Albania to India and Japan to the USA – have already signed the Charter. And it’s been translated from English into 12 different languages: Dutch, Finnish, Flemish, French, German, Hungarian, Italian, Norwegian, Polish, Portuguese, Serbian and Spanish. If you believe in the difference that hospice and palliative care volunteers can make, then please show your support by signing the Charter here.

The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care has three key aims:

  • Promote the successful development of volunteering for the benefit of patients, families and the wider hospice and palliative care community.
  • Recognise volunteering as a third resource alongside professional care and family care, with its own identity, position and value.
  • Promote research and best practice models in the recruitment, management, support, integration, training and resourcing of volunteers.
EAPC Madrid Charter on Volunteering in Hospice and Palliative Care

Launch of the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care, Madrid 2017. Left to right: Prof Philip Larkin, EAPC President; Dr Julie Ling, CEO of EAPC; Dr Roberto Wenk, Past President of IAHPC; Dr Stephen Connor, Executive Director, WHPCA; Mag a Leena Pelttari, MSc, Co-Chair EAPC Task Force on Volunteering and CEO, Hospice Austria. Photograph: Dr Johann Baumgartner, Hospice Austria.

But why do we need a Volunteering Charter?

Volunteers have long been involved in hospice and palliative care in many countries – in some countries palliative care could not happen without them. Volunteers contribute in various ways, supporting patients, families, and organisations. You may have seen Mijodrag Bogićević’s inspiring blog post about the difference that volunteers are making to BELhospice in Serbia.

Yet, volunteers are still not always recognised for their skills, experience and value to hospice and palliative care organisations and the people that they support. The EAPC Volunteering Charter aims to address this by asking individuals and organisations to commit to:

  • Recognise the important role of volunteers in the total care of patients and their families, and in sustaining hospice and palliative care services.
  • Promote volunteering in support of patients and their families.
  • Ensure effective management of volunteering, including clearly defined policy on roles, careful recruitment, selection, training and development.
  • Ensure effective support for hospice and palliative care volunteering at organisational, local and national levels (including the recognition of the importance of data collection, evaluation and research).

How could the Charter help you to enhance and improve support?

Even in countries with well-established and developed hospice and palliative care volunteering, there is still much to do. For example, do you regularly collect data and report on volunteering activity and impact in your organisation? Is this collected and reported nationally to give an overview of local and national trends to inform future planning? If not – perhaps the Charter can inspire you to start!

Tell us your story …

We are currently collecting short stories (around 400-500 words) from individuals and organisations about the difference the Charter has made to them, their organisation or country.

We would love to hear what influence the Charter has had, the changes that have been made and how they were made. If you want to help, reach out to us by emailing Ros Scott  or Leena Pelttari.

Links

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Palliative care airtime at the WHO Euro Committee Meeting in Rome

Katherine Irene Pettus, PhD, Advocacy Officer International Association for Hospice & Palliative Care (IAHPC), prepares for an important WHO meeting starting in Rome today… 

Katherine Irene Pettus

The 68th WHO Europe Regional Committee (RC38) meeting in Rome (September 17-21) will consider several important reports and resolutions including on Public health, Progress towards the Sustainable Development Goals, and Child and Adolescent Health. As a “non-state actor” (civil society) organisation in official relations with the World Health Organization (WHO), the International Association for Hospice and Palliative Care (IAHPC), is entitled to participate in the RC38 meeting, and to submit oral and written statements on the agenda items. IAHPC and other civil society organisations, have submitted oral and written comments on at least two agenda items that should include palliative care but do not. These comments will be posted on the RC38 website for member states to review and consider, and will become part of the record of the meeting. 

To prepare for a meeting like this, I first review the agenda and identify which documents should include palliative care. Then I analyse the documents or reports, which almost never mention palliative care, and draft a statement describing how palliative care is relevant to the issue at hand. The statement references what WHO palliative care policy is, and how palliative care can contribute to improved public health outcomes in the member states.

Collaborating with other professional organisations

An important part of the preparation process is collaboration between the non-state actors registered to attend the meeting. Before the submission deadline, we send our statements to the attendee list, requesting comments and endorsement. The European Public Health Association (EUPHA) sent out the first statement on the Public Health Background Document, Advancing public health for sustainable development in the WHO European Region. We commented on it and endorsed it when EUPHA included palliative care language.

Likewise, the IAHPC written statement on the public health document has now been endorsed by EUPHA, the International Union of Toxology, the Council of Occupational Therapists for the European Countries – COTEC, the European Association for Palliative Care (EAPC) and the Worldwide Hospice Palliative Care Alliance (WHPCA).

The IAHPC statement focuses on the fact that the public health and non-communicable diseases strategies and narratives are incomplete when they focus only on prevention and promotion. We make the point that a complete public health strategy must include appropriate treatment and palliation, as per the WHO’s own definition of Universal Health Coverage.  A key paragraph in our statement reads:

“The RC68 Background Documents rightful emphasis on early detection and prevention is incomplete. It must be balanced with attention to palliative care for all inhabitants of the EURO region, including particularly vulnerable populations such as migrants, refugees, prisoners, and homeless persons who suffer from communicable, non-communicable, and chronic diseases. It is time that the global public health community, whose focus, quite rightly, has been on maternal child health and epidemics, adds public health palliative care to the policy agenda. Managing chronic illness with community based, public health palliative care reduces health system costs and improves quality of life of patients, families and communities. The evidence demonstrates that this is a fair and equitable solution.”


Photo: Alexei and Dascha, Belarus Children’s Hospice. Photograph courtesy of Katherine Pettus.

Paediatric palliative care

The Child and Adolescent Health Strategy produced by the RC38 Secretariat to be discussed in Rome, made no mention of cancer, palliative care, suicide, or substance use dependence disorder, all pressing pediatric global health issues. IAHPC delegation member Giovanna Abbiati, Project Manager for the Rome based Maruzza Foundation, drafted the IAHPC statement, which addresses the need to include palliative care head on:

 “We are surprised that the document does not include the need to develop palliative care policies to meet the needs of children and adolescents in the EURO region. IAHPC takes a rights-based approach to palliative care, which emphasizes that these children and their families are a particularly vulnerable group. Children with palliative care needs suffer from a broad range of heterogeneous conditions that require interdisciplinary, holistic interventions tailored to meet the individual child and their family.”

We look forward to a lively and productive meeting and will do our best to ensure that the benefits of palliative care are mentioned in the outcome documents. One day, if we do our job well, palliative care will be routinely included in all the reports, and we can concentrate on implementation.

Join us!

Next year’s EURO meeting will be in Copenhagen. IAHPC is always interested in including palliative care practitioners to advocate in our delegations at WHO’s regional meetings such as RC68, so let us know in advance if you if you would like to join our delegation.

Links and resources

 

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STOP! Patients receiving CPR despite valid DNACPR documentation

Lucy Baxter, Simulation and Clinical Education Fellow, South Tyneside District Hospital, South Shields, UK, and Jennifer Hancox, Core Medical Trainee, Sandwell District General Hospital, Birmingham, UK, explain the background to their longer article published in the June issue of the European Journal of Palliative Care.

Lucy Baxter (left) and Jennifer Hancox

What is a good death? A US Institute of Medicine report from 20 years ago states a good death is “Free from avoidable distress and suffering for patient, family and caregivers, in general accord with the patient’s and family’s wishes, and reasonably consistent with clinical, cultural and ethical standards.” More recently, a literature review identified 11 core themes of a good death; the first of which was ‘preferences for a specific dying process.’ 2

In all of our own practices, and for many of us in our personal lives, we have seen examples of both excellent and poor end-of-life care. Nearly all guidance on the topic emphasises the importance of considering the patient’s wishes. Furthermore, UK case law has highlighted that ‘a mentally competent patient has an absolute right to refuse to consent to treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death.’3

A decision regarding whether to deliver CPR (Cardiopulmonary Resuscitation) in the event of cardiac arrest ultimately rests with the medical team, but should consider patient wishes where at all possible.4 This may involve asking the patient or their loved ones directly and/or referring to Advance Decisions to Refuse Treatment (ADRT) or an appointed Lasting Power of Attorney (LPA), where an individual lacks capacity. A DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) form acts as guidance in the event of cardiac arrest. The ultimate decision to deliver CPR rests with the team providing immediate care at the point of arrest and they can act in contrast to a DNACPR it if they believe circumstances have changed and it is now in the patient’s best wishes to receive CPR.This differs from an ADRT, which is legally binding. In both cases, however, the ethical principle of autonomy must be adhered to.

So what happens if we have done all the right things, asked the patient’s wishes, completed the correct documentation, and then those wishes are inappropriately ignored? A UK National Confidential Enquiry into Patient Outcome and Death (NCEPOD) report in 2012 reviewed cardiac arrest cases in the UK and found that 9.42 per cent received CPR (cardiopulmonary resuscitation)despite valid DNACPR (Do Not Attempt Cardiopulmonary Resuscitation)decisions.Our team* decided to look at cases where this had occurred in our own hospital trust (an organisation that runs a public hospital on behalf of the National Health Service in England), in order to identify areas for improvement.

We reviewed the notes of all cardiac arrest cases across the trust in the year of 2014. We found that eight of the 132 cases had DNACPR decisions, and yet still received CPR. No sets of notes indicated new information which would challenge the existing DNACPR form. The most common theme we identified was lack of documented communication about the DNACPR, both between healthcare teams and with patient’s loved ones. Not one set of notes had documentation of the decision being communicated to the wider healthcare team. We therefore hypothesised that improving communication and its documentation would make resuscitation decisions clearer for both the patient and medical team, therefore reducing incidences of inappropriate CPR.

We recommended including DNACPR decisions on medical handovers, adapting treatment escalation forms to prompt communication, and education around communication of this decision. We provided educational sessions to trainee doctors, care of the elderly and acute medical multidisciplinary teams, and trust quality improvement teams. The treatment escalation forms included a prompt as to whether the DNACPR had been discussed with the patient and next of kin. Despite these measures, 21 further incidents between 1/1/2015 and 1/5/2018 in which patients received CPR despite valid DNACPR documentation had occurred, demonstrating this is still an ongoing concern. Both from the NCEPOD report and anecdotally, we know this is a widespread problem and by no means unique to this trust.

Performing CPR despite valid DNACPR documentation, in the absence of new information which would challenge the original DNACPR decision, opposes ethical principles of beneficence, non-maleficence and autonomy. Further research in this field is required to better equip ourselves to prevent this occurring and we hope our study will prompt this. The perfect method to improve end-of-life care, communication around DNACPR, and to prevent errors such as this, has not yet been found. We suspect a mixture of methods, including newer approaches to raising awareness and new technology, such as social media for healthcare staff and patient education, might all be of value.

Lucy is currently working as a Simulation and Clinical Education fellow and is working on methods to improve end-of-life care and communication in this role. Jennifer is a core medical trainee with a keen interest in palliative care as a specialty choice so will also be on the lookout for new approaches.

We hope our study and this blog will inspire all of us to consider how we can ensure our patient’s end-of-life wishes are upheld.        

References

  1. Approaching death: improving care at the end of life – a report of the Institute of Medicine. Health Services Research. 1998; 33 (1): 1-3.
  2. Meier EA, Gallegos JV, Montross-Thomas LP, Depp CA, Irwin SA, Jeste DV. Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue. The American journal of geriatric psychiatry: official journal of the American Association for Geriatric Psychiatry. 2016; 24(4): 261-271. doi:10.1016/j.jagp.2016.01.135.
  3. Sensky T. Withdrawal of life-sustaining treatment : Patients’ autonomy and values conflict with the responsibilities of clinicians. BMJ : British Medical Journal. 2002; 325(7357): 175-176.
  4. GMC ethical guidance for doctors. Found at: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life/cardiopulmonary-resuscitation-cpr
  5. Time to Intervene – A report by the National Confidential Inquiry into Patient Outcome and Death. 2012.
  6. Tolley T, Hancox J, Baxter L, King B. Prevention and prediction: Root cause analyses from admission to arrest of Cardiopulmonary resuscitation delivery occurring in general wards across two District General Hospitals. Resuscitation 2015; 96:142-43.

*A review, in conjunction with the resuscitation team within our trust, identified predictable and potentially preventable cases of cardiac arrests occurring within 2014.This highlighted cases of patients receiving CPR despite DNACPR forms and formed the basis for our research.

Read the full article in the European Journal of Palliative Care free of charge

This post relates to the longer article, ‘STOP! Patients receiving CPR despite valid DNACPR documentation’ by Lucy Baxter, Jennifer Hancox, Ben King, Alexandra Powell and Thomas Tolley, published in the June edition of the European Journal of Palliative Care (EJPC) 2018; 25 (3). If you already have a personal subscription to the journal, just LOGIN in the usual way. If you do not have a subscription, you will need to REGISTER here.

Note from the EAPC concerning the European Journal of Palliative Care

We regret to announce that Hayward Medical Communications, the publisher of the European Journal of Palliative Care (EJPC), is closing the journal after 24 years.

Since the launch of the journal in 1994, the EAPC and the EJPC have forged a strong and mutually effective bond. Together, we have provided our members and readers with a wide range of papers, including several seminal EAPC White papers, and the book of abstracts for many EAPC congresses. Our successful collaboration has also led to the publication of numerous posts on this blog contributed by many of the EJPC’sauthors, providing a background to their longer articles. The diversity and high quality of the content has enriched our blog and we are deeply grateful to past and present authors, and to our colleagues at the EJPC. A tribute from the EAPC is published in the current issue of the journal.

Please address any enquiries about EJPC editorial or subscription matters to the publisher at: ejpc@hayward.co.uk (editorial) or ejpc_subscriptions@hayward.co.uk (subscriptions).

You can view and download more than 120 posts based on EJPC articles in the special category on the blog for the European Journal of Palliative Care.

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When 999 gets called at the end of life – from life to death

In this backgrounder to a longer article published in the June issue of the European Journal of Palliative Care, Richard Smith, a paramedic with the East of England Ambulance Service NHS Trust, UK, explains how collaborative initiatives between two UK ambulance services and local hospices have resulted in improved education on end-of-life care among paramedics.

Richard Smith

When we decide to train as a paramedic to work in the ambulance service, we do so with one aim: to save lives. During my career, I have come to recognize that paramedic practice is not solely about saving lives but providing care, compassion and dignity to patients and their families even in the most challenging of situations.

In recent years, the paramedic profession in the United Kingdom has developed autonomous healthcare professionals able to manage a variety of chronic and acute conditions both in the community and within healthcare facilities. In this time, we have also seen an increase in managing patients outside of hospital to reduce demand on hospitals.

Emergency calls (999 is the official emergency number for the United Kingdom) are often received for patients who are palliative and end-of-life care. Often a crisis in the community (such as respiratory distress and unconsciousness), leads to 999 being called. Paramedics therefore need to possess the skills to manage end-of-life care patients in the community considering the physical, social and holistic assessment of patients and their families.

It is well documented in the literature that there are challenges to paramedics providing this care including communication, coordination of services and lack of education to name a few. In two of the UK’s ambulance services – East of England Ambulance Service NHS Trust (EEAST) and South East Coast Ambulance Service (SECAMB) – there has been a drive to improve the quality of care provided to this group of patients focusing on effective assessment and management.

At a local level, ambulance clinicians have been provided with bespoke training with the support of palliative care professionals from local hospices. Training sessions have included: communication skills, DNACPRs (Do not attempt cardiopulmonary resuscitation) and advance care plans, anticipatory medication, reversible conditions and more. Feedback from these sessions has suggested we have been able to provide ambulance clinicians with the tools and confidence to manage these patients.

At a national and strategic level, work by senior clinical managers has established a UK-wide working group on end-of-life care involving all ambulance services. This has been central to pushing a focused effort on bringing improvements in this area of practice. For EEAST, this has resulted in a five-year end-of-life care strategy and practice guidance which has provided the foundations for this important group of patients receiving the appropriate care from our clinicians. In 2017, the work that has been completed by EEAST and core end-of-life care topics were publicised in an ‘End of-life Care Month’. This included articles and podcasts on the trust’s internal communications platform.

A significant part of this work has been to forge multi-disciplinary relationships between ambulance clinicians and palliative care professionals. By understanding each other’s realities, we have been able to improve patient care on both sides of the patient’s journey. Ambulance clinicians are now equipped to deal with these elements of patient care and others understand what part we have to play.

We believe that continued collaborative working of ambulance trusts with hospices
and other end-of-life care teams will help ambulance clinicians to deliver effective, compassionate and relevant end-of-life care.

Read the full article in the European Journal of Palliative Care free of charge

This post relates to the longer article, UK ambulance services: collaborating to provide good end-of-life careby Sarah Stead, Shirmilla Datta, Claire Nicell, James Hill and Richard Smith, published in the May/June edition of the European Journal of Palliative Care (EJPC). 2018; 25 (3).  If you already have a personal subscription to the journal, just LOGIN in the usual way. If you do not have a subscription, you will need to REGISTER free of charge.  http://www.haywardpublishing.co.uk/ejpc.aspx

Acknowledgement

I would like to thank the other authors of the article cited above (Sarah Stead, James Hill, Claire Nicell and Shirmilla Datta) for their shared commitment and support to improving end-of-life care provided to patients at a local and national level. 

More about the author …

Richard Smith BSc (Hons) has been a paramedic since 2013 and is based in the Hertfordshire area of East of England Ambulance Service.

Note from the EAPC concerning the European Journal of Palliative Care

We regret to announce that Hayward Medical Communications, the publisher of the European Journal of Palliative Care (EJPC), is closing the journal after 24 years.

Since the launch of the journal in 1994, the EAPC and the EJPC have forged a strong and mutually effective bond. Together, we have provided our members and readers with a wide range of papers, including several seminal EAPC White papers, and the book of abstracts for many EAPC congresses. Our successful collaboration has also led to the publication of numerous posts on this blog contributed by many of the EJPC’s authors, providing a background to their longer articles. The diversity and high quality of the content have enriched our blog and we are deeply grateful to past and present authors, and to our colleagues at the EJPC. A tribute from the EAPC is published in the current issue of the journal.

The publisher has kindly made all articles in the May/June 2018 issue freely available online. Click on this link to login (if you already have a personal subscription) or register.

Please address any enquiries about EJPC editorial or subscription matters to the publisher at: ejpc@hayward.co.uk (editorial) or ejpc_subscriptions@hayward.co.uk (subscriptions).

You can view and download more than 120 posts based on EJPC articles in the special category on the blog for the European Journal of Palliative Care.

Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care | Tagged | Leave a comment

Joining the conversation about ‘difficult conversations’

A new self-report measure designed to help patients with serious illness address the impact of their changing health Is currently being evaluated in palliative care settings in the UK. Dr Linda Machin, Honorary Research Fellow at Keele University and Honorary Researcher at the International Observatory on End of Life Care at Lancaster University, UK, explains more about the Attitude to Health Change scale.

Dr Linda Machin

Speaking to someone known personally to me, who had recently been unexpectedly diagnosed with a life-threatening illness and who was facing a difficult treatment regime and discussions about future care, I was aware how suddenly his world had contracted and was defined by the stark realities of his physical condition. His eyes showed the compliant absence of one at the mercy of life-threatening illness and healthcare plans. When it was possible to step behind those circumstances and spend time talking about experiences and people in his life, a light returned to his eyes and he was even able to smile.

This raises the question, how do we retain a connectedness to the person who exists behind the ‘patient’ label? How might reaching that person not only give them more respectful space to reveal who they are but also enable them to talk about the fears and uncertainties that come with changes in their health?

The Attitude to Health Change scale

A person-centred approach increases an appreciation of what contributes to a patient’s vulnerability and what contributes to their resilience; factors crucial to assessing support needs. The Attitude to Health Change scale (AHC) is a nine-item self-report measure designed to explore the impact of changing health on a patient. The scale provides a way of looking at how changes in health can be emotionally overwhelming or can prompt emotional suppression/control, and appraises how these reactions are mediated by varied degrees of vulnerability and resilience. It is important to recognise that while identifying vulnerability is crucial, the characteristics of resilience are evident in many people who are coping with the realities of deteriorating health. There is a parallel version of the AHC for use with carers.

The AHC is derived from a validated scale used in bereavement – the Adult Attitude to Grief scale (AAG). Like the AAG scale, the AHC provides an indication of levels of vulnerability through the quantitative scores. Of equal importance, the themes in the scale provide patients, their carers and professional practitioners with a way to explore sensitive issues, both at the point of diagnosis and at significant stages as an illness progresses, through conversations which are focused and facilitate good caring relationships. A practitioner who uses the AHC says:

 “The AHC questionnaire has proved to be a highly valuable tool when exploring how patients feel about their changing health. It helps to open up many important avenues of conversation and it helps to create a focus for therapeutic work at a stage in someone’s life when they may have many worries and fears as well as sadness about what is happening to them.”   

Evaluation of practitioners’experience of using the AHC scales is currently being undertaken in a number of palliative care settings and data collected by the International Observatory on End of Life Care at Lancaster University. Discussions are also taking place with academics and practitioners in Spain and France who are interested in the possibilities of using the AHC within their palliative care work.

To find out more …

For more information/discussion about the Attitude to Health Change scale, please email Dr Linda Machin, Honorary Research Fellow at Keele University and Honorary Researcher at the International Observatory on End of Life Care at Lancaster University.

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Enabling leaders in palliative and end-of-life care

Professor Phil Larkin and Professor Raymond Voltz on behalf of the European Association for Palliative Care (EAPC) and The European Academy in Palliative Care (EUPCA) announce the ‘Award for Palliative Care Leadership Programmes 2019’.

EUPCA coordinator, Dr Gerrit Frerich, explains what it takes to be a winner …

Clockwise: Gerrit Frerich, Raymond Voltz (EUPCA) and Phil Larkin (president, EAPC)

Palliative Care has received considerable socio-political support due to the expected epidemiological developments in societies worldwide: the population ages, the pattern of diseases that people suffer from and die of is also changing. Increasingly, more people die as a result of serious chronic disease, and older people in particular are more likely to suffer from multi-organ failure towards the end of life.

In recent years, there has been a considerable growth of specialist palliative care educational opportunities, with increasing numbers of specialists. Leadership knowledge and skills are crucial in order to achieve successful change, or to advance in complex systems and uncertain situations.

Future leaders are palliative care professionals who will effect positive change not only in their country by engaging in advancing and improving the provision of palliative care but also worldwide by networking and learning from international examples of best practice. We recognise the importance of educational programmes and their role in training and inspiring these future leaders to be the pioneers needed for the development of palliative care. Therefore, we are delighted to announce the ‘Award for Palliative Care Leadership Programmes 2019’ to reward those programmes already doing this important work and to encourage others to follow suit. The award is presented jointly by the European Academy of Palliative Care (EUPCA) and the European Association for Palliative Care (EAPC).

What defines a successful leadership programme?

  • We are looking for evidence of leadership capacity building programmes worldwide that are striving to develop palliative care at a time when it is needed most.
  • These initiatives could take place in your hospice, hospital or other palliative care institution – anywhere in the world.

An independent jury of internationally renowned experts from the EAPC and EUPCA will select the winner. The award winner will be announced at an award ceremony that will take place during the 16th World Congress of the European Association for Palliative Care in Berlin 2019. A representative of the winning institution will receive registration, accommodation and travel costs to attend the three-day conference and the ceremony.

Presentation of EUPCA Leadership Award at the 16th World Congress of the European Association for Palliative Care 2017.

Leadership Award Winners in 2017

The first leadership award was presented at the 15th World Congress of the European Association for Palliative Care in Madrid 2017 and was shared by two winners.

Julia Downing, Professor and Honorary Research Fellow at King’s College London: for the Uganda Palliative Care Nurse Leadership Fellowship Programme. Nurses play a key role in the provision of palliative care in Uganda and needs assessments have shown a need for the development of nurse leadership skills.

Leena Pelttari, CEO of the Hospice Association Austria:  for the interdisciplinary educational programme Master of Science in Palliative Care in Austria.The main aim of this programme is not only to qualify health and social care professionals in palliative care, management and leadership but also to develop new institutions and improve existing structures.

If you think your institution fulfils the criteria, and you wish to be considered for this exciting award, then we would love to receive your application.

More about EUPCA …

The European Palliative Care Academy is a joint project of the University Hospital of Cologne/ Germany, King’s College London/ United Kingdom, Nicolaus Copernicus University in Torun/ Poland and Hospice Casa Sperantei in Brasov/ Romania. It is financed by the Robert Bosch Stiftung/ Germany. Since 2012, we have run the EUPCA leadership course every two years enabling 59 excellent Palliative Care experts from 22 Eastern and Western European countries to achieve successful change and to advance Palliative Care by implementing personal projects in their region. Please visit www.eupca.eu for further information concerning the course and its impact.

EUPCA works in collaboration with the EAPC.

Links

  • To find out more about the award, the requirements and to apply, please visit our website.

Deadline for applications: 4 November 2018.

  • You can read more posts from The European Academy in Palliative Care on the EAPC Blog

Find out more about the 16th EAPC World Congress in Berlin here. Online abstract submission is now open – submit your abstract here.

 

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‘Death is difficult in any language’

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

Professor Elizabeth A. Lobb and Dr Anna Green explain the background to their longer article selected as ‘Editor’s Choice’ in the September 2018 issue of Palliative Medicine.

Prof Elizabeth Lobb

Rising population trends in ageing, chronic illness, and migration have significant implications for the provision of palliative care. These global trends have led to ageing populations within countries defined by growing cultural heterogeneity and numbers of people who do not speak the dominant language. The increase in these culturally and linguistically diverse (CALD) populations corresponds with growing recognition of the need for planning and delivery of palliative care services to address the needs of this patient group.

Palliative care teams are at the coalface of navigating the complex space of providing good end-of-life care and support to patients from CALD backgrounds.

Dr Anna Green

There has been significant development of specialist palliative care services within New South Wales, Australia. However, there is little information available at the patient level that describes how palliative care services impact on the type and quality of care provided. Using a chart audit methodology, we reviewed the clinical journeys of 100 patients from culturally and linguistically diverse backgrounds who had transitioned from acute care facilities to either community or inpatient care within our specialist palliative care service in a metropolitan region of Australia. We also asked inpatient and community palliative care team members about their perceptions of providing care to this population.

Our findings

The overarching approach to providing care was that death is difficult in any language. This reflected a perception that concerns related to approaching the end-of-life were universal and that cultural and linguistic backgrounds need to be considered within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group. The findings support the use of a social-ecological approach1in the development of responsive models of care for patients from CALD backgrounds.

Conclusion

Communication is key to balancing the needs of the individual and the needs of the family in palliative care. The role of family members as intermediaries between patients and providers is in conflict with the Western medical emphasis on patient autonomy. However, conversations about how to reconcile Western ethical frameworks within palliative care with other cultural imperatives without stereotypes or oversimplification are important. Raising palliative care provider awareness of how to accommodate cultural beliefs in the provision of care should involve the tailoring of education and information in collaboration with CALD communities.

Working with family members to increase their knowledge and comfort with administration of pain relief, and addressing family distress regarding patients’ lack of appetite and food consumption, will help to minimise some of the identified barriers to care in this population.

References

1.Davidson PM, Phillips JL, Dennison-Himmelfarb C, et al. Providing palliative care for cardiovascular disease from a perspective of sociocultural diversity: a global view. Curr Opin Support Palliat Care2016; 10: 11–17.

More about the authors …

Elizabeth A. Lobb PhD, Professor of Palliative Care, Chair, Calvary Palliative and End of Life Care Research Institute, Adjunct Professor, the University of Notre Dame, and University of Technology, Sydney, Australia. Contact Elizabeth Lobb by email.

Anna Green PhD, Post-doctoral research fellow, IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney, Australia. 

Read the full article in Palliative Medicine

This post relates to the longer article, ‘Death is difficult in any language’: A qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds by Anna Green, Natalia Jerzmanowska, Marguerite Green,Elizabeth A Lobb, published in Palliative Medicine 2018 Volume: 32 issue: 8, page(s): 1419-1427. Article first published online: May 16, 2018; Issue published: September 1, 2018. https://doi.org/10.1177/0269216318776850.

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