Preparing new UK doctors to deal with death and dying – a simulation-based approach

Dr Laura Jones is a junior doctor who previously worked as a teaching fellow at South Tyneside District Hospital in the UK. Earlier poor feedback on didactic teaching methods for final year medical students led Laura to develop her own three-day simulation-based teaching programme with positive results.

Dr Lorna Jones

Both as a medical student and Foundation Doctor* I was frustrated and upset by how underprepared I was by my undergraduate training to deal with end-of-life care.

Fifty per cent of the UK population die in hospital (1), but most newly qualified doctors feel underprepared to deal with end-of-life care partly owing to few teaching hours as well as the challenges that palliative care creates (1, 2, 3).

Last year I worked as a Teaching Fellow, and one of my roles was to deliver teaching to final year medical students on palliative care. Previously, teaching was delivered through didactic teaching receiving poor feedback. Learners stated they were bored, they did not retain knowledge and most significantly they felt the teaching was irrelevant. I was not able to increase the number of hours of teaching allocated, so I tasked myself with creating a biopsychosocial approach to a teaching session that would engage and challenge the students while helping them understand why the knowledge was relevant to them. We looked at common problems, including recognising a patient is coming to the end of their life, broaching conversations with relatives and patients, starting anticipatory medication and, most importantly, identifying when they needed to seek senior support.

Using a simulation-based (experiential) approach to learning 

Simulation is a term used a lot currently in medical education. I see simulation as an educational experience that takes learners away from traditional teaching methods, such as sitting in a classroom, to an experience where they interact with the learning environment around them. Making decisions and performing tasks that change the outcomes of the scenario they are presented with. Often, it is seen that to do simulation you need high tech equipment, which costs a lot of money. But I believe simulation is all about the environment created, the opportunities given, alongside the feeling of realness and challenge for the students. With a little bit of creativity and thought this can be done on a much lower budget and therefore be more widely available. Simulation is a wonderful tool that, if used correctly, can provide a safe bridge for medical students to move from the ability to recite facts to actually becoming the doctor they dreamed of, capable of applying their knowledge to a real patient from day one.

Improving undergraduate palliative care teaching – use of simulation to address an unmet need. (Click on the poster to download a copy).

 

The programme started with tea, cake and an open discussion about a Foundation Doctor’s role in death and dying, allowing learners to understand why the teaching programme was going to be relevant to them, activating prior knowledge and shaking off any preconceptions they might have.

I used a low-fidelity simulation, utilising actors, staff members and mannequins as well as creating patient notes. This allowed for a learner-centred approach where the learners were fully in charge of their patient’s journey from patient assessment on admission to hospital, breaking bad news through discussions with family members, dealing with the patient’s death and learning coping mechanisms for dealing with death as a junior doctor.

I chose to use simulation to ensure that both patient care was not affected and learner’s confidence was not knocked should they make a mistake. This allowed learners to develop their own knowledge constructs through both positive and negative experiences in the simulation.

We used pre-and post-teaching survey evaluation; the results were reassuring with a significant increase in the learner’s confidence in dealing with all major palliative care issues tested. But, most importantly for me, we ascertained that teaching was well received with positive feedback that learners not only enjoyed the programme, they also understood why the teaching was important and engaged with the experience. I would hope that they can take these skills forward when they start work as a Foundation Doctor* and that the programme will be run again in future now I have moved on from this role to continue my training.

* A Foundation Doctor is a grade of medical doctor in the UK undertaking the Foundation Programme – The first two years of being a doctor after medical school and where you start your journey as a junior doctor in the UK. During this time, you develop your skills in a range of medical, surgical and community specialties ensuring all doctors can manage a sick patient acutely and have a basic understanding of a range of different specialties. This creates a solid foundation for all doctors no matter what their chosen speciality is.

References

  1. Gibbins J, McCoubrie R, Maher J, Wee B, Forbes K. Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK. Palliative Medicine.2010; 24 (3):299-305.
  2. Fitzpatrick D, Heah R, Patten S, Ward, H. Palliative Care in Undergraduate Medical Education – How Far Have We Come? American Journal of Hospice & Palliative Medicine. 2016; 34 (8):762-773.
  3. Field D, Wee B. Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools 2000-2001. Medical Education. 2002; 36(6):561-567.

Links

Posted in EDUCATION & TRAINING | Tagged , | Leave a comment

EAPC Board Matters: Board members of the European Association for Palliative Care meet in Paris

Professor David Oliver, University of Kent, and EAPC Board member, reports on key activities discussed at the autumn board meeting held in Paris in October.

Professor David Oliver

Our French palliative care member association (SFAP –Société Française d’Accompagnement et de Soins Palliatifs) held an International Palliative Care Experts Symposium at the French Ministry of Health on Tuesday 9 October. As three of our board members, Phil Larkin, Sébastien Moine and Carlo Leget, were invited to present at the meeting, the EAPC Board took this opportunity to meet in Paris. We would like to thank Marie-Claire Garnier and Lyn Silove for their help with organising the meeting, which took place in the beautiful surroundings of Paris’s largest palliative care unit, Maison Médicale Jeanne Garnier.

There was a full board agenda that included:

EAPC website

We are really pleased to announce that we have launched our new website.As with all websites, this is work in progress and we look forward to hearing any feedback that you may have. We have improved the functionality, which means that you can now access it from your Smartphone or tablet. The new website is easy to navigate and provides information about all aspects of the work of the EAPC including our involvement in research projects, the work of our task forces and reference groups and access to EAPC publications. Some areas are restricted to our members only. To access this area you need to login to your EAPC account using your email and password. If you are not a member of the EAPC and would like to join or renew your membership please click here.

European Union (EU) funding

EAPC work continues on the EU-funded PACE Project, which concludes in January 2019. The EAPC is also a partner in the ERASMUS-funded project, EDUPALL. This project focuses on the development of an online curriculum for undergraduate medical student education. A pre-EAPC World Congress seminar is being arranged for 22 May 2019 in Berlin. This session is aimed at anyone involved, or with an interest, in palliative care education for medical students. Professor Eduardo Bruera will be among the speakers. The EAPC has also been successful in a further three bids for H2020 funding as a dissemination partner. Work will start on these projects early in 2019.

EAPC Congresses

The 16th EAPC World Congress will take place in Berlin on 23 to 25 May 2019.

Key dates:

  • 31 October 2018 – Abstracts submission has been extended until 31 October. Submit your abstract here.
  • 15 February 2019 – Early bird registration is now open. Register by 15 February to get a discount.
  • 30 November 2018 – nominate or be nominated for the EAPC Research Awards.

Dates for your diary

The 11th  EAPC World Research Congress will take place in Palermo, Italy, 14 to 16 May 2020.

Plans are being made so please put the date in your diaries now!

The 17th EAPC World Congress will take place in Helsinki, Finland, from 20 to 22 May 2021 – the planning has started!

Research Network

We welcome Professor Augusto Caraceni from Milan, Italy, as the new Chair of the EAPC Research Network. The Network is busy organising the World Research Congress in Palermo. The close relationship between the Board and the Research Network will continue. A formal appreciation of the work of the last EAPC RN committee will follow in a forthcoming blog post from the EAPC President.

Civil Society Forum on Drugs (CSF)

The EAPC has been a participant in this Forum, which considers all aspects of drug rehabilitation, management and the accessibility to opioids for medical and scientific use. The CSF has worked closely with the EU Commission and the EU statement at the recent Commission on Narcotic Drugs of the United Nations 61st session in Vienna included a statement on accessibility and availability of medication.

Newsletter

The EAPC is producing an online newsletter that we will send to all members, both individual members and members of our national member associations throughout Europe. The newsletter will provide updates on the work of the EAPC, provide information on events and update our members on current news from Europe and beyond.

Keep in touch

The board welcomes comments and suggestion from members and seeks to look at the development of palliative care throughout Europe, and in collaboration with other organisations across the world. This is the opportunity to become more involved – take it now and use the EAPC Blog, Twitter, Facebook and LinkedIn to connect with us.

Anyone is welcome to contact the President, Professor Phil Larkin, or the Chief Executive Officer, Dr Julie Ling by email.

Join the EAPC palliative care social media community

You can read earlier posts about EAPC Congresses and EAPC activities on the blog.

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UK Supreme Court ruling on treatment withdrawal – implications for palliative care

Celia Kitzinger and Jenny Kitzinger, Co-Directors of the Coma and Disorders of Consciousness Research Centre at Cardiff University, UK, reflect on the new court ruling.

Prof Celia Kitzinger (right) and Prof Jenny Kitzinger

The UK Supreme Court ruled in July 2018 that it is not mandatory to apply to court before withdrawing life-sustaining treatments (in particular, clinically assisted nutrition and hydration [CANH]) from people in prolonged disorders of consciousness (vegetative or minimally conscious states). Doctors can now make decisions about CANH for these patients (as for all others) in accordance with the law and professional guidelines. The court is still available where there is doubt about the patient’s best interests or disagreement between families and doctors.

We welcome the Supreme Court ruling. Our research shows that singling out this group of patients for court scrutiny led to widespread failures to consider their best interests – with treatment often continuing by default, or with unnecessary delays before withdrawal causing considerable distress to families.

But one useful aspect of the court process was approval of a palliative care plan, structured in accordance with National Clinical Guidelines. These Guidelines (endorsed by the Association for Palliative Medicine) emphasize the need for collaboration between the palliative care and neurorehabilitation teams, set out an example of a detailed regimen for staged escalation of sedation and analgesia, and outline the support needed for families (and staff). Where these Guidelines are followed, families report “peaceful” or “good” deaths.

‘Feed’: Created by the artist Tim Sanders.

Will these deaths be as well managed without the requirement for the court to approve a palliative care package?

We recently interviewed someone whose wife (in a vegetative state) died after CANH withdrawal without judicial review – as will normally now be the case. He expressed concern about staff understanding of the process, and what he considered less than adequate levels of pain relief and sedation. He was very distressed by what he witnessed in the last few hours of his wife’s dying. This contrasts with most of our interview reports of deaths after court hearings.

Palliative care for people in prolonged disorders of consciousness [PDOC] has some distinctive features.

Unlike many other end-of-life patients, PDOC patients will not die for a long time (perhaps decades) if CANH is continued.

Physiologically, these patients are often younger, physically robust, and have no co-morbidities. When CANH is withdrawn, dying can take much longer than clinicians are accustomed to. If hydration is provided even in small quantities – e.g. via fluids delivered in conjunction with medications – the dying process can be very protracted.

The Guidelines recommend proactive planning for use of IV medications to deal with apparent signs of suffering, which may sometimes escalate rapidly and unpredictably.

It is likely there will be an increase in end-of-life care needed for PDOC patients over the year ahead, as the backlog of best interests decision-making is implemented following the Supreme Court judgment. It is vital that staff consult the Guidelines, consider information from the patient’s family and previous care team, and access appropriate specialist expertise.

Please tell us about your experiences

Finally, we’d be interested to hear from colleagues internationally (where court hearings have never been the norm), about their experience of deaths of PDOC patients. Please contact us at the links below, or leave a comment on the blog.

Links and resources

BREAKING NEWS …  #EAPC2019 – ABSTRACT DEADLINE EXTENDED TO 31 OCTOBER!
Do you want to help shape the conference programme for #EAPC2019? Then please submit your abstract online now. Abstracts can be submitted in two categories, either as an oral or as a poster presentation. Deadline for abstract submission: 31 October 2018. For more information on the congress, and to register, please visit the congress website.

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More than meets the eye: How design can help people at end of life

Ivor Williams, Senior Design Associate at Helix Centre, a healthcare innovation lab within St Mary’s Hospital, London, UK, explains the background to his longer article published in the May/June issue of the European Journal of Palliative Care.

Ivor Williams

Design might not seem like an obvious ally to end-of-life care. Isn’t money better spent on therapists, palliative care nurses, and out-of-hours care services rather than making things look good? You could be right in thinking that, if design was only about aesthetics.

Thankfully, designers can play a far more useful role than simply being craftsmen or creators of beauty. In his 1971 book, the designer Victor Papanek defined a new focus for design saying: “the only important thing about design is how it relates to people”. His pioneering work in ‘social design’ has led me, as a designer, to work to support people at the end of their life, focusing around their needs, their relationships and their hopes and goals.

I lead the end-of-life care projects at the Helix Centre, an innovation lab in the heart of health care. Situated in St Mary’s Hospital in London, the Helix Centre is a collaboration between Imperial College London and the Royal College of Art. Our mission is to achieve high quality care for all, worldwide and with the largest impact possible. It exists to drive progress and keep moving forward. We are an interdisciplinary group of designers, technologists, clinicians and researchers. We use human-centred design to dissect problems, identify opportunities, and develop clinically evaluated digital solutions.

Researching and designing innovative solutions to improve the quality of life for people with life-limiting conditions. Photograph courtesy of the Helix Centre.

Our dedicated team works on several end-of-life care projects. We aim to research and design innovative solutions that improve the quality of life for people – young and old – living with life-limiting conditions or who are at the end of their life. We are committed to alleviating suffering for dying people, empowering them to live their life to the fullest and to transform and improve the experience of families and carers, as well as healthcare professionals. We have been developing three active areas of work that broadly address end-of-life care in the hospital, the home and the hospice.

So far, we’ve focused on re-designing the experience of capturing emergency care decisions at the end of life with the ReSPECT plan and process. At the centre of the ReSPECT process is a paper form which is designed to guide a conversation between healthcare professionals and the patient. We know this is important because talking about death in a hospital can be incredibly difficult. The curative setting builds an expectation with patients that they are going to get better, receiving life-prolonging treatment at all costs. Many feel that the responsibility for discussions around palliative or end-of-life treatments should come from clinicians.

The ReSPECT form features a graphic device used to demonstrate that there is often a compromise between sustaining life and providing comfort and dignity. We helped to clarify this process for patients, to make it accessible and easy to understand. Although seemingly antiquated in the age of digital apps, the paper form and process enable an important change in health care: to bring the relationship between patient and doctor to the forefront, and support meaningful patient-centred care.

We’re creating the most comprehensive patient-facing advance care planning platform that allows everyone to easily capture their end-of-life care decisions, with a product called Amber Care Plans. (See also links below). Advance Care Plans enable people to make decisions about their future care, ranging from their preferences for personal hygiene to advance decisions to refuse treatment. They’re known to effectively reduce hospital bed days in over-65s, and move deaths from hospital to the community. However their uptake is very poor, with poor coordination between services and issues of versioning when different plans exist in different places. Our digital plan – Amber – changes that, to make advance care plans easy to complete and share.

Lastly, we’re also working with leading hospice partners to create the future of adult and children’s hospice care in the UK and abroad. We believe that design has a huge role to play in transforming end-of-life care for decades to come and, if approached the right way, we think that everyone stands to benefit.

Links

Read the full article in the European Journal of Palliative Care free of charge
This post relates to the longer article, Using human-centred design in end-of-life care by Ivor Williams is published in the June edition of the European Journal of Palliative Care (EJPC) 2018; 25 (3). To download the full article free of charge please login if you already have a subscription, or register here.

Note from the EAPC concerning the European Journal of Palliative Care

We regret to announce thatHayward 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 EJPChave 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.

Posted in Advance care planning, EAPC-LINKED JOURNALS, European Journal of Palliative Care | Tagged , | 1 Comment

Why my hat’s on for children’s palliative care – #HatsOn4CPC

CELEBRATING HATS ON FOR CHILDREN’S PALLIATIVE CARE – FRIDAY, 12 OCTOBER 2018 – a day to raise international awareness of the work of children’s hospices and children’s palliative care services worldwide. 

Lizzie Chambers, Director of Research and Programmes, Together for Short Lives, and Co-Chair of the European Association for Palliative Care (EAPC) Paediatric Task Force, will be celebrating this important day and explains how you can contribute at a special children’s palliative care session at the EAPC World Congress next year.

Lizzie Chambers in her Viking’s hat for #HatsOn4CPC

This year,  Friday, 12 October is the annual ‘Hats On’ day for children’s palliative care. Alongside the silly posing in Sombreros and Panamas, the day is a vital reminder of the need to really stop and think about the 21 million babies, children and young people around the world who need palliative care. It’s unimaginable to think of these children suffering with pain and other symptoms that could be alleviated and their families having to watch their children suffer. It’s just not right and it’s why I’m so passionate about palliative care being available to all children who need it.

This passion led me to accept the invitation to become co-chair of the newly established EAPC Task Force for children’s palliative care. We were delighted to hear that for the first time we are going to have a full day of children’s palliative care sessions at the next EAPC Congress in Berlin on 23 May 2019. I’m really looking forward to spending a few days in that beautiful city and to hearing and learning from a fantastic programme of speakers. It’s such a golden opportunity to share and showcase our work and research in children’s palliative care.

Join us and submit an abstract on children’s palliative care 

The deadline for abstract submissions is 15 October 2018 and a large part of the programme is made up of submitted abstracts. We are delighted to already have a strong line up of speakers at the children’s palliative care sessions, including Eduard Verhagen, Sat Jassal, Danai Papadatou, Ulrika Kriecsbergs, Lorna Fraser and Boris Zernikow. If you would also like to contribute to the programme, please submit your abstracts (for either oral or poster presentation) via the congress website. We’re really looking forward to reviewing a wide range of abstracts, from different disciplines and from different European countries.

New edition of the Guide to Children’s Palliative Care

I can’t sign off without mentioning that here in the UK, we have just launched our new edition of the Guide to Children’s Palliative Care. We hope this will be a useful tool for colleagues to use across Europe and in other countries of the world to help them to open up conversations about children’s palliative care and to cement children’s palliative care as a ‘must have’ service. We are hoping in the future to work with members of the EAPC Paediatric Task Force to develop a version of the Guide specifically for international audiences, so watch this space and do get involved!

Links

SUBMIT YOUR ABSTRACT FOR EAPC2019 – deadline for submissions 15 October 2018

If you’d like to contribute to the programme of the 16thEAPC World Congress in Berlin 2019, please submit your abstracts (for either oral or poster presentation). Submit online here. Find out more about the congress here, or register here.

Posted in ADVOCACY & POLICY, Children and young people, CHILDREN'S PALLIATIVE CARE | Tagged | Leave a comment

Hungry, homeless and heading for heaven: Exploring end-of-life preferences of homeless people in the UK

CELEBRATING WORLD DAY OF HOMELESSNESS, 10 OCTOBER 2018 –  we’re republishing this post by Wendy Ann Webb, first published as a blog post on 2 May 2018 relating to her longer journal article. And you can download the full article too …

Wendy Ann Webb, Queen’s Nurse, PhD Student and Florence Nightingale Research Scholar, explains the background to her PhD research and a longer article published in the March/April edition of the European Journal of Palliative Care.

Over the past 18 years, I have worked as a palliative care nurse in five different hospices. I have also worked with the homeless community in four different roles. I noticed that homeless people were not being admitted to the hospices where I worked, and I began to wonder where, and whether, they were being cared for at end of life. For my MSc dissertation in 2013, I decided to research end-of-life care within hostels in the UK (Webb, 2015). The findings had a significant impact on me and I knew that my work in this area was far from finished.

Hungry, homeless and heading for heaven. Photograph © Wendy Ann Webb.

Through the interviews conducted with staff from several hostels, I heard how people experiencing homelessness often died undignified deaths in inappropriate, communal, hostel settings where staff received no training or support from healthcare professionals; a finding later affirmed by the landmark Care Quality Commission report ‘A second class ending’ (Care Quality Commission, 2017).

One research participant pointed out how unfair this seemed as: “these people have not had much dignity [in life] anyway”Another told me that that one dying resident “was found dead [by other residents] in the early hours of the morning”.

Alongside my MSc research, I worked as a volunteer nurse in drop-in clinics for homeless people. As I gently redressed laceration wounds resulting from deliberate self-harm activity and abscess wounds from injecting drugs, clients often shared personal life stories about the trauma of the adverse childhood experiences (ACEs) they had lived through. One man in his 20s, addicted to heroin and with severe mental health issues, shared how he had been raped by his uncle as a child and had watched his own brother murder his mother. I found myself wondering how his life would one day end. I also wondered how I would have coped in any of their shoes. My compassion for people experiencing homelessness deepened and soon I found myself applying for a PhD – determined to make some small difference to the end-of-life experiences of people who have often had such a difficult start in life.

Wendy Ann washing a client’s feet at one of the volunteer nurse clinics she has worked in. Photograph © Wendy Ann Webb.

I became aware of the need to find out what matters most for homeless people when they consider their own end of life, so that appropriate, relevant services can be planned for this vulnerable, marginalised group. My PhD research is therefore exploring end-of-life preferences and priorities within the homeless population.

Research data are currently being analysed and I will soon be able to share my findings and interpretations. I hope to be able to stimulate further discussion regarding the types of services required to meet the priorities, and often complex needs of homeless people at the end of life.

References

Care Quality Commission (2017) A SECOND CLASS. ENDING: Exploring the barriers and championing outstanding end of life care for people who are homeless. Download a copy here.

Webb, W. A. (2015) ‘When dying at home is not an option: exploration of hostel staff views on palliative care for homeless people’, International Journal of Palliative Nursing, 21(5), pp. 236–244. doi: 10.12968/ijpn.2015.21.5.236.

Links

Read the full article in the European Journal of Palliative Care

This post relates to the longer article, ‘Exploring end-of-life preferences of homeless people in the UK’ by Wendy Ann Webb, Theresa Mitchell, Brian Nyatanga and Paul Snelling, published in the March/April edition of the European Journal of Palliative Care (EJPC) 2018; 25 (2). If you have a subscription to the journal, please LOGIN or  REGISTER HERE to download the full article free of charge.

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), has now closed the journal after 24 years.

Since the launch of the journal in 1994, the EAPC and the EJPChave 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 June 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.

 

 

Posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care, Minority Communities | Tagged | Leave a comment

Celebrating Hats On for Children’s Palliative Care – #HatsOn4CPC – 2018  

HATS ON FOR CHILDREN’S PALLIATIVE CARE – FRIDAY, 12 OCTOBER 2018 – a day to raise international awareness of the work of children’s hospices and children’s palliative care services worldwide.

Ahead of this year’s Hats on for Children’s Palliative Care, Professor Julia Downing, Chief Executive, ICPCN (International Children’s Palliative Care Network), reminds us why it’s vital that every child who needs it should have the right to access palliative care.

Julia Downing dons a hat  for #hatson4cpc

Yesterday, I was at Hospis Malaysia in Kuala Lumpur for a palliative care symposium. We were discussing the benefits of palliative care for children and as I reflected on this I remembered a young girl that I had cared for in Uganda several years ago. She had cancer, which was in its advanced stages when she was first diagnosed as it had taken four months to make the diagnosis. She was very weak and tired, but we had managed to control her pain and her other symptoms and she was curled up on the mattress at the hospital laughing with her younger sister and telling her a secret. As I looked at them together, I thought how ‘lucky’ they were that she was in Kampala and able to access the palliative care team. Not only were we able to make her last few days more comfortable, but also we were able to care for her family and support them after she died.

She was one of the 21.6 million children globally (1) needing palliative care, yet only an estimated 10 per cent of these children can access such care. The recent Lancet Commission report on pain and palliative care (2) highlighted that every year nearly 2.5 million children die needing palliative care and more than 98 per cent of these children are from low-income countries. Access to pain control and palliative care is a human right – children have a right to health care and to be free from pain, but we have a long way to go to ensurethat all children who require palliative care have access to it.

Will you help us to support Hats on for Children’s Palliative Care?

On Friday, 12th October 2018, we are celebrating the 5th annual Hats on for Children’s Palliative Care Day – #HatsOn4CPC. ICPCN decided to establish the day in order to raise awareness of the rights of children needing palliative care to access it. We want to see children accessing palliative care so that they can have a better quality of life, free from pain and other distressing symptoms, letting them live life to the best of their ability.

#HatsOn4CPC is a way of raising awareness and funds for children’s palliative care services and we hope that we can encourage you, alongside members of the public, to wear a hat to work, school or college – then take a selfie, add the hashtag #HatsOn4CPC andupload it to your Facebook page or Twitter feed and tag ICPCN. We hope that those who are able to will make a donation to ICPCN or their local children’s palliative care service.

Perhaps readers of the blog would like to join in and organise a #HatsOn4CPC event – or simply wear your hat to work! We have a variety of materials on our website to help you if you’re short of ideas – just click here to access them. If you organise an event, then let your local newspaper know about it and encourage them to promote the event to raise awareness for children’s palliative care.

I will be in Indonesia on Friday  12th October at Rachel House children’s palliative care programme, where we will be celebrating the event and wearing our hats to work. So watch out for our pictures on social media and join us in raising awareness of children’s palliative care this October – #HatsOn4CPC

References

  1. Connor SR, Downing J, Marston J. (2017) Estimating the global need for palliative care for children: A cross-sectional analysis. Journal of Pain and Symptom Management. 53 (2) : 171-177.
  1. Knaul FM, Farmer PE, Krakauer EL, De Lima, L, Bhadelia A, Kwete XJ, Arreola-Ornelas H, Gómez-Dantés O, Rodriguez NM, Alleyne GAO, Connor SR, Hunter DJ, Lohman L, Radbruch L, del Rocío Sáenz Madrigal M, Atun R, Foley KM, Frenk J, Jamison DT, Rajagopal MR, on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group (2017), Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. The Lancet. Published online October 12, 2017.

Links


SUBMIT YOUR ABSTRACT FOR EAPC2019 – deadline for submissions 15 October 2018

For the first time ever, there’s a full day of children’s palliative care sessions at the next EAPC Congress in Berlin on 23 May 2019. If you’re working or involved in children’s palliative care, please submit your abstract (for either oral or poster presentation). Submit online here.  Find out more about the congress here,  or register here.

 

Posted in ADVOCACY & POLICY, Children and young people, CHILDREN'S PALLIATIVE CARE | Tagged | Leave a comment