Spain’s first paediatric palliative care unit

Last year, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, we published a series of posts about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families. This week we bring you two more contributions from Ukraine and Spain. 

Today, Lucía Navarro Marchena tells us about the work of the paediatric palliative care unit at the Hospital Sant Joan De Déu d’Esplugues, Barcelona, Spain.

After the death of a patient due to a neurodegenerative disease, his mother told us:

“If I had known that my child would have this disease, I would be his mother once and one thousand times.”

This feeling of love and support gives sense to our work and explains our aim of caring our patients until the end.

Lucía Navarro Marchena

In Spain, about 3,000 children die every year. There are almost 400 deaths in Catalonia, and most of them are expected. Unfortunately, not all these children have access to a paediatric palliative care unit for symptom control allowing them to die at home with their families. (In Spain we do not yet have paediatric hospices, and there are not enough primary health resources to provide care at home. This makes death at home very difficult unless you have support from a paediatric palliative care unit. In our experience, most of the families we support prefer that their child is supported at home and our goal is therefore to support them in achieving this).

The Paediatric Palliative Care Unit at Sant Joan de Déu Hospital (Barcelona) was established in 1991, thanks to the initiative of the Brothers Hospitallers of Saint John of God, and is the first of its kind in Spain.

Our unit provides 24/7 care, 365 days per year, for children throughout Catalonia. We look after children at home and in those hospitals where patients have palliative needs (paediatric oncology, neurology, paediatric intensive care unit (PICU), neonatal intensive care unit (NICU).

 

Teamwork is essential …

In 2015, the unit developed a project that enabled an increase in staffing levels to three paediatricians, four nurses, and a full-time social worker and psychologist. Mostly because of this, last year we supported more than 100 families (see Figure 1 below). In addition, we have a spiritual advisor who works across the whole hospital.

Teamwork is essential. The health professionals make their assessments and then put them all together to design a comprehensive, therapeutic plan according to common goals. This enables us to look at the patient and their family as a whole unit and to give them the best possible care.

The paediatricians are responsible for controlling symptoms, making decisions, managing the information and prescribing. Part of the nurses’ role is to be aware of, and respond to, patients’ needs as well as making sure that their symptoms are controlled and providing healthcare education to our children’s families.

The role of the social worker is to manage the social context and family dynamics when a patient is admitted to the palliative care unit (family structure, support network, socio-economic and employment situation), by detecting all the social factors that could disturb the patient care progress.

The psychologist’s role is to help patients and their families to manage their emotional distress during the final stage of the disease.

We also provide spiritual support, helping the family and child to understand their inner thoughts, to give voice to their questions and meaning to their answers, and to find elements of hope for every difficult moment.

We work closely with healthcare services and schools, and because we try not to disrupt the children’s routine we can also visit them there.

We have a long way to walk – a lot of things to improve. But we’ll keep working hard, step-by-step, to give the best care possible to our patients and their families. Because they deserve it.

Links and resources

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Developing support for children and young people: The All-Ukrainian Association of Palliative and Hospice Care

Last year, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, we published a series of posts about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families. This week we bring you two more contributions from Ukraine and Spain. 

Alexander Wolf, Head of the All-Ukrainian Association of Palliative and Hospice Care, and a clinical social worker at the National Children’s Hospital in Kyiv (Kiev) Ukraine, shares some milestones in palliative care development in his country.

Alexander Wolf

In Ukraine, there are at least 0.5 million seriously ill citizens who are in a great need of help at the end of their earthly journey. Furthermore, we have around 80,000 children and young people suffering from genetic, neurological, oncological diseases who need palliative and hospice care.

Since 2006, the All-Ukrainian Association of Palliative and Hospice Care, a charitable organization, has been developing support to seriously ill patients and their families. At that time, this issue was almost never talked about in Ukraine. The question of adequate pain management was not addressed – patients experienced the most severe physical suffering (only morphine injections were available but with many restrictions), and the state paid no attention to the needs of terminally ill patients and their families.

Now, just a little more than 10 years later, the situation has changed for the better. Ukraine has a significantly liberalized regulatory framework on the use of pain medications; oral and other forms of morphine and systematic training and education. There are around 35 adult palliative care services (although these are within the structure of the national health care system and provide a mostly medicalised approach to care). Another specific result of our activities is the development of new units for terminally ill children.

Training on human rights, basics of palliative and hospice care and project management in Dnipro, 2016

Achievements in 2016

Here are some of our activities in the past year which we hope may inspire others to help seriously ill children and young people.

Educational activities included training across many towns and cities on the rights of seriously ill children, educational visits to Poland, Sweden, Norway, Hungary, Belgium, and formal post-graduate training for around 650 civic leaders and activists. We also provided training for health and social care managers in partnership with the Department of Palliative and Hospice Medicine of the National Medical Academy in Kyiv. And recently we produced a special Android application (available for free at Google Play, https://lnkd.in/gihPpz2) with information and suggestions about caring for seriously ill patients and their relatives. (Authors: Iryna Gavrysheva, Alexander Wolf and Liudmyla Pryjmak).

As Head of the Association of Palliative and Hospice Care, I joined the international editorial board of the journal, Social-Health Spectrum, and the Scientific Council of Krakow Hospice for Children. Our Association has published a report on the rights of seriously ill children. We also continue to monitor legislative activity of the Ukrainian Parliament (Verkhovna Rada) on issues of social policy and social protection.

Our PR activities include a Facebook Group with nearly 1,000 people, more than 400 posts shared, three radio interviews, and 45 publications.

Our future plans include an innovative palliative home care project in cooperation with the community-based district centre of social services in Kyiv, and the development of clinical (hospital) social work in cooperation with the National Children’s hospital in Kyiv (where I am a clinical social worker). We also plan to open a new office of the association in the Chernihiv region and to establish training centres for palliative and hospice care in Lviv and Kyiv.

Thank you to all those who have helped us to achieve our successes.

Links

Follow the EAPC Blog on Wednesday when Lucía Navarro Marchena writes about Spain’s first paediatric palliative care unit.

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Palliative care in neurology

David Oliver is an honorary professor at the University of Kent in the UK, a board member of the European Association for Palliative Care and a retired consultant in palliative medicine.

Professor David Oliver

Palliative care featured again at the Congress of the European Academy of Neurology (EAN) in Amsterdam at the end of June 2017. There has been a developing collaboration between the EAN and the European Association for Palliative Care (EAPC) and in 2016 Professor Phil Larkin, President of the EAPC, and Professor Gunther Deuschl, President of the EAN, signed a Memorandum of Understanding, formalising this collaboration. (See an earlier blog post).

There was a session on End of Life Care at this year’s EAN Congress. I spoke on the role of palliative care in neurology and the development of the Consensus document on neurological palliative care produced by the EAN and EAPC. 1 I talked about the role of palliative care earlier in the disease progression and how this earlier care could profoundly influence the opportunity to provide end of life care, allowing patients to die peacefully. Dr Simone Veronese from Turin presented the growing evidence base for palliative care for neurological patients, including the studies he has led showing that quality of life and symptoms improves by integrating palliative care as disability progresses and symptoms increase. 2

Professor Christina Faull, from LOROS Hospice and De Montfort University in Leicester, UK, discussed the issues if treatment is withdrawn at the patient’s request. She encouraged the delegates to consider the ethical and practical issues, particularly when withdrawing ventilation for a person with amyotrophic lateral sclerosis/motor neurone disease. She included recent research on the experiences of professionals and families following withdrawal of ventilation and the development of UK Guidelines published by the Association for Palliative Medicine. 2

Conference speakers (left to right):
Prof Christina Faull, Prof David Oliver and Dr Simone Veronese

More than 50 people attended the session – at 8.00am on a Sunday morning! We were very pleased that so many people came and participated in this meeting. There was a real interest in palliative care and we look forward to a joint symposium at the Congress in 2018 in Lisbon.

There was also the opportunity to meet with representatives of the EAN. I had a very fruitful discussion with EAN President elect – Professor Franz Fazekas – and Professor Marianne de Visser, Co-Chair of the Palliative Care Scientific Panel, during which we strengthened the ongoing collaboration. The EAPC now has a Reference Group on Neurological Palliative Care, allowing continuing discussion with the EAN scientific panel on palliative care, both of which I currently chair. There is also increasing collaboration with other panels of the EAN, and involvement in the development of guidelines.

This was a very successful and rewarding congress and there is a real spirit of collaboration with the aim of improving care for patients with progressive neurological disease across Europe. 

Link and References

  1. Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; 23: 30-38. doi: 10.1111/ene.1288
  2. Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Cavalla P, Zibetti M, Rivoiro C, Oliver DJ. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL, a pilot randomized controlled study. BMJ Supp and Pall Care 2015; 0:1-9. Doi: 10.1136/bmjspcare-2014-000788.
  3. Faull C. Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals. Association for Palliative Medicine of Great Britain and Ireland, 2015.

 

 

 

 

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Learning through listening: The development of the ‘SAGE Palliative Medicine & Chronic Care’ podcast

Dr Amara Nwosu, Marie Curie Palliative Care Institute Liverpool, University of Liverpool, is Digital Editor of Palliative Medicine. Here, he explains more about the podcast and how it can help busy healthcare professionals …

Dr Amara Nwosu

The ‘SAGE Palliative Medicine & Chronic Care‘ podcast is an initiative from Palliative Medicine (the world’s highest-ranked journal – a peer-reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with advanced disease). The podcast aims to widen research dissemination by providing authors with the opportunity to record an audio summary of their research.

Research is important to provide the necessary evidence to inform care delivery for people requiring palliative care.1 It is essential that research outcomes are translated into clinical practice. Barriers to research dissemination include a variety of factors, such as academic paywalls (restricting access to Internet content via a paid subscription) and lengthy publishing processes.2 But for the busy healthcare professional, a particular challenge is time – not enough of it. Furthermore, the amount of published studies about palliative care is increasing each year. Although the increasing evidence base is good for the specialty, it creates additional pressure for healthcare professionals to find the time to process this increasing amount of data.

A potential solution …

Research dissemination can potentially be aided through the development of a podcast series, which provides a summary of published journal content. Podcasts can be defined as episodic digital audio recordings, which can be downloaded from the web or streamed online.3 Research demonstrates that podcast listenership is increasing.4 An increasing number of scientific medical journals already provide their own podcast channel.

Building on these ideas, I discussed with Palliative Medicine’s Editor, Professor Catherine Walshe, the potential to complement the journal’s dissemination strategy by incorporating a podcast series. In 2016, I was appointed as Palliative Medicine’s Digital Editor to oversee the podcast development process. A few authors of published work were invited to record a three-minute summary of their research.

Since November 2016, 13 podcasts have been recorded with more than 1,500 downloads. The podcasts have been promoted actively through social media resulting in increased interest, access and dissemination of the featured articles. We aim to increase the number of developed available podcasts to enable more healthcare professionals to access important palliative care information through this medium.

My appointment as Digital Editor of Palliative Medicine, and my relationship with podcasts, has been an interesting step in a journey that began in my childhood. At school, convinced I might have a future as a radio host, I joined my school ‘Amateur Radio Club’. One day, I proudly presented my classmates with a radio I had built from scrap wire and other components I had found lying around my house. I hoped for praise, but (disappointingly) I only received derision and earned the title of ‘geek’ (a title which has remained with me today). On leaving school I pursued a career as a doctor (described in another EAPC blog) as opposed to a radio presenter. However, my interest in radio communication remained unquenched and has led to my palliative care and technology podcasts (AmiPal), 3 and my current role.

If you’re an author of a paper published in Palliative Medicine and are interested in recording a podcast, please email me.

How to access the ‘SAGE Palliative Medicine & Chronic Care’ podcasts

  • Subscribe to the podcasts from iTunes here.
  • Follow Amara Nwosu on Twitter @amaranwosu

 References

  1. Payne S, Preston N, Turner M, et al. Research in palliative care – can hospices afford to not be involved?: International Observatory on End of Life Care, University of Lancaster, 2013.
  2. Kaasa S, Radbruch L. Palliative care research–priorities and the way forward. Eur J Cancer 2008;44(8):1175-9. doi: 10.1016/j.ejca.2008.02.036 [published Online First: 2008/04/01].
  3. Nwosu AC, Monnery D, Reid VL, et al. Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast. BMJ Support Palliat Care 2016 doi: 10.1136/bmjspcare-2016-001140 [published Online First: 2016/09/02].
  4. Edison Research. The podcast consumer 2015. Website of Edision Research 2015. (Available here).
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Palliative care in the intensive care unit

Prof David Oliver and Dr Elena Stanton explain the background to a longer article in the May/June issue of the European Journal of Palliative Care

Prof David Oliver

In 1991 a Hospital Palliative Care Team was started within the Medway Maritime Hospital in Gillingham, UK – a local hospital with 660 beds. The Team has expanded over the years and there are now four specialist nurses, with regular support from the Consultant in Palliative Medicine at the Wisdom Hospice. The team is part of the wider palliative care services in the Medway and Swale area.

The team visit nearly all wards and departments within the hospital and see more than 1,500 patients each year. In recent years there has been increasing involvement within the Intensive Care Unit (ICU). Before retirement in 2016, I (David) provided the medical support in the hospital in my final two years and became more aware of this work. I started to record the patients seen and then together with Dr Elena Stanton, a Registrar in the ITU, analysed the issues and patients seen.

Dr Elena Stanton

This study has now been published in the European Journal of Palliative Care – see link below. Over a two-year period, 24 patients were seen on the ITU – 33 per cent with cancer and 66 per cent with non-malignant disease. The issues that were raised were for advice on symptom management, ethical advice, in particular withdrawal of treatment, support for families and concerns about further care of patients, who no longer required intensive care but were deteriorating. Three patients were transferred to the Wisdom Hospice directly from the ITU – two died (four and nine days after transfer) and one man improved and was discharged home, where he died 11 months later.

Medway Maritime Hospital in Gillingham, UK

Here is one of the case histories that we discuss in our article in the EJPC:

Mrs C, an 88-year-old lady who had fallen at home, giving a history of feeling lightheaded and dizzy. After admission to hospital she deteriorated and collapsed and was transferred back to the acute hospital; a CT scan confirmed a subdural haematoma and she was admitted to ITU. Due to comorbidities and her deteriorating condition, no further treatment was planned and it was agreed after a full assessment and consultation with her family that treatment would be withdrawn.

The Hospital Palliative Care Team were asked for advice on management of her symptoms and took part in discussions with her family who realised that she may die very soon. The many family members needed support, and the ITU staff asked for continued support from the HPCT until she died two days later.

The collaboration and involvement in the ITU have developed from close working relationships over the years. The request for ethical advice shows that there is trust and a collaborative relationship between the Hospital Palliative Care Team and the ITU staff. The study has shown that palliative care is appropriate in the intensive care setting and a collaborative interaction between teams can facilitate better care and support for patients, families and staff.

Read the full article in the European Journal of Palliative Care

This post relates to a longer article, ‘Palliative care in the intensive care unit’ by David Oliver and Elena Stanton published in the May/June 2017 edition of the European Journal of Palliative Care (EJPC). (vol. 24.3).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journalclick here to subscribe online.

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

More about the authors …

David Oliver is an honorary professor at the University of Kent, in the UK, and a Board member of the European Association for Palliative Care. Before retirement, David was Consultant in Palliative Medicine at the Wisdom Hospice, Rochester, UK.

Elena Stanton is an Anaesthetics Specialist Trainee and was working in the Intensive Care Unit of the Medway Maritime Hospital, Gillingham, UK. At present she is at Guy’s and St Thomas’ NHS Foundation Trust in London, UK.

 

 

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WeCare Festival: Living to the end – International Festival of Creative Representations of the End of Life


HAGA CLIC AQUÍ PARA OBTENER LA VERSIÓN EN ESPAÑOL

The WeCare Chair: End of Life Care, a research group based at the Universitat Internacional de Catalunya, Spain, has launched a call for creative expressions in the form of films, stories and photographs ­ that illustrate experiences at the end of life. Josep Porta-Sales, Cristina Monforte and Rebecca Latter, members of the research group, explain.

WeCare promotes knowledge of relevant issues at the end of life through research, training and other social actions. Often, the end of life is identified as a situation involving suffering.

Through this festival, we want to reflect that life can be full of meaning in all circumstances, until the end. As such, this festival aims to present the end of life as a situation in which we can find meaning. The short films, short stories and photographs presented in the festival will give a voice to patients, family members and health professionals who experience these circumstances.

The festival will take place at the Universitat Internacional de Catalunya in March 2018 and will include panel discussions with experts from various disciplines.

We welcome proposals that portray the end of life from the following perspectives:

  • people with advanced illness
  • older people
  • people with chronic illness or physical limitations
  • children and/or teenagers facing the end of their life or that of a loved one
  • family members, friends and carers
  • healthcare professionals
  • other related themes.

 

The three categories are:

  • Short films (up to 30 minutes). 1st prize: 800 euros. 2nd prize: 400 euros (with subtitles Spanish, Catalan or English)
  • Short stories (up to 750 words). 1st prize: 400 euros (in Spanish, Catalan or English)
  • Photographs. 1st prize: 400 euros.

This festival is part of the framework of the call for research funding Recercaixa 2015, financed by l’Obra Social la Caixa. This call has two primary objectives: to promote scientific research and make scientific knowledge more accessible for all members of society by involving them in scientific breakthroughs and their human and social benefits.

The festival is linked to an ongoing project, ‘Suffering at the end of life: understanding it in order to alleviate it. Perceived dignity, desire for control and the wish to hasten death in patients with advanced cancer’, financed by Recercaixa 2015. We proposed the festival in order to open a dialogue between researchers, artists, patients, healthcare professionals and other members of society.

Cristina Monforte explains the context of the festival, linked to a research project:

“In the media, illness and death are often represented as a uniquely negative situation, burdened by suffering. Death is even seen as a taboo that it is best to avoid talking about. There are often conspiracies of silence between family members and health professionals who are reluctant to talk about end-of-life issues. Through this festival, we want to offer an alternative perspective and encourage reflection about this period of vulnerability.”

Josep Porta-Sales mentions the importance of making palliative care visible in society:

“Illness does not affect just the patient but also their family and social setting. It is important to promote an open dialogue about this phase of life in order to be able to address the needs of everyone involved.”

For more information about the festival, visit our website (and click on WeCare Festival: Living to the End) or email us. We would like to encourage you to share this post with friends, colleagues or patients who may be interested in participating.

Read more posts from the WeCare Chair: End of Life Care research group on the EAPC Blog.

 

 

 

WeCare Festival: living to the end – International Festival of Creative Representations of the End of Life

La Cátedra WeCare: Atención al final de la vida, un grupo de investigación de la Universitat Internacional de Catalunya (UIC Barcelona), ha abierto una convocatoria para expresiones creativas (cortometrajes, relatos cortos y fotografías) que ilustren experiencias al final de la vida. Josep Porta-Sales, Cristina Monforte y Rebecca Latter, de la Cátedra WeCare, explican …

La Cátedra WeCare: Atención al Final de la Vida ha abierto ha convocatoria para expresiones creativas que ilustren experiencias al final de la vida.

La Cátedra WeCare promueve el conocimiento de temas relevantes al final de la vida a través de la investigación, formación y otras acciones sociales.

Con frecuencia, el final de la vida se identifica con situaciones de sufrimiento. Con este festival queremos reflejar la vida puede estar llena de sentido en todas las circunstancias hasta el final. Por lo tanto, este concurso tiene como objetivo presentar el ámbito del final de la vida como una situación en la que también se puede encontrar un sentido. A través de los cortometrajes, se dará voz a los pacientes, familiares y profesionales de la salud que viven estas situaciones.

El festival y entrega de premios tendrá lugar en la Universitat Internacional de Catalunya en marzo 2018. El festival concluirá con una mesa redonda donde participarán profesionales de diferentes disciplinas expertos en la temática.

Categorías

  • Cortometrajes (hasta 30 minutos) 1er premio -– 800 euros 2º premio – 400 euros (subtitulados en castellano, catalán o inglés)
  • Relatos cortos (hasta 750 palabras) 1er premio – 400 euros (en castellano, catalán o inglés)
  • Fotografías 1er premio – 400 euros.

Se admitirán propuestas que reflejen el final de la vida desde las siguientes perspectivas:

  • personas con enfermedad avanzada
  • personas mayores
  • personas con enfermedad crónica o limitaciones físicas
  • niños y/o adolescentes afrontando su final o el de personas cercanas
  • familiares, amigos y cuidadores
  • profesionales de la salud
  • otros temas relacionados.

Este Festival se inserta en el marco de la convocatoria de ayudas para la investigación Recercaixa 2015, financiado por l’Obra Social la Caixa. Esta convocatoria persigue principalmente dos objetivos: impulsar la investigación científica de excelencia y acercar la ciencia a la sociedad, haciéndola partícipe de los adelantos científicos y de los beneficios humanos y sociales.

Este festival está vinculado con el proyecto de investigación   ‘Sufrimiento al final de la vida: comprender para aliviar. Dignidad percibida, deseo de control y deseo de adelantar la muerte en pacientes con cáncer avanzado’, financiado por RecerCaixa 2015. Nos propusimos impulsar un festival de expresiones creativas para abrir un diálogo entre investigadores, artistas o creativos, pacientes y profesionales de la salud y la sociedad.

Cristina Monforte explica el contexto del festival, vinculado con un proyecto de investigación:

 “En los medios de comunicación, la enfermedad y la muerte se suelen representar como una situación exclusivamente negativa y cargada de sufrimiento. Incluso, sigue viéndose la muerte como un tabú del cual conviene evitar hablar. A menudo se dan conspiraciones de silencio entre las familias y los profesionales de la salud se muestran reacios a hablar sobre temas de final de vida. A través de este festival, queremos ofrecer un contrapunto y fomentar la reflexión sobre esta etapa de vulnerabilidad. ”

Josep Porta-Sales comenta la importancia hacer cercanos los cuidados paliativos a la sociedad:

 “El hecho de vivir una enfermedad no afecta solo al paciente sino a su familia y su entorno social inmediato. Es importante promover un diálogo abierto sobre esta etapa vital para poder abordar las necesidades de todos.”

Para más información sobre el festival, visite nuestra web o póngase en contacto con nosotros. Le animamos a compartir este post con amigos, compañeros o pacientes que pudieran estar interesados en participar.

Lee más publicaciones de la Cátedra WeCare: Atención al Final de la Vida en el blog de la EAPC.

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Euthanasia and Physician Assisted Suicide in Portugal: The need for further research to mediate the debate

Following last week’s post ‘Bringing the EAPC white paper to the centre of the Portuguese debate’, Sandra Martins Pereira, Pablo Hernández-Marrero and Ana Sofia Carvalho from the Instituto de Bioética, Universidade Católica Portuguesa, Porto/ UNESCO Chair in Bioethics, Porto, Portugal, continue the debate …

Sandra Martins Pereira

Pablo Hernández-Marrero

Ana Sofia Carvalho

 

 

 

 

 

 

Euthanasia and physician-assisted suicide (PAS) are nowadays hot topics in Portugal, undergoing dramatic public, societal, legal, cultural, ethical and political debates. This followed a citizens’ initiative, Dying with Dignity’ (Morrer com Dignidade), which requested the Portuguese Parliament to legalize these two practices.

What does it mean to die with dignity? Are dignity and autonomy equal in their entity and definition? Should the discussion about the legalization of euthanasia and PAS be mediated by the use of expressions such as “dying with dignity”, as if they were synonyms or as if those who die in a different way are not “dying with dignity”? Why do the advocates of this movement deliberately choose to use euphemisms to describe their cause instead of referring to it by its name? Will the legalization of euthanasia and PAS diminish therapeutic obstinacy? Is palliative sedation a form of euthanasia already implemented in clinical practice in Portugal? These are only a few of the questions currently under fire in Portugal, with citizens and healthcare professionals positioning themselves in two opposing directions: pro-legalization versus non-legalization.

In our opinion, there are two main issues in the Portuguese debate to which we would like to draw particular attention.

First, we have a major concern about the apparently increasing public support for euthanasia and PAS disseminated through diverse media channels. Biased wording is being systematically used and several concepts are not correctly defined. It is our perception that citizens, journalists, politicians and healthcare professionals are positioning themselves based on inaccurate perceptions, lack of information and lack of knowledge about palliative and end-of-life care, decisions and practices. In fact, the majority of professional, public, societal, ethical and political debates are being framed by mere opinions and by the use of euphemisms and inaccurate expressions. Crucial terms are being left undefined or, even worse, ambiguously and wrongly presented, causing confusion and misunderstanding. This, in our opinion, is determining and influencing the debate, misleading citizens and professionals alike.

The Portuguese translation of the EAPC White Paper on Euthanasia and Physician-Assisted Suicide may indeed have a positive impact and highlight the debate by providing clear definitions and consensus on several ethical issues at the end of life.

Second, very little is known about end-of-life decisions and decision-making processes in Portugal. Hence, there are unresolved issues needing additional research. We consider that there is also a further need not only to investigate the attitudes toward euthanasia and PAS, but also the willingness to perform these practices, especially among those trained and involved in palliative care. This is the main focus of our current and ongoing research project entitled EPASP: Euthanasia and Physician-Assisted Suicide in Portugal; preliminary results to be released soon.

References and links

Radbruch L, Leget C, Bahr P, Müller-Busch C, Ellershaw J, de Conno F, Vanden Berghe P; Board Members of EAPC. Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliat Med. 2016 Feb; 30(2): 104-16. doi: 10.1177/0269216315616524. Epub 2015 Nov 19.

 

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