Evaluating palliative care in a neonatal intensive care unit in São Paulo

Ligia Marçola, Neonatologist and Medical Researcher, Unit of Pediatric Pain and Palliative Care, Instituto da Criança do Hospital das Clínicas da FMUSP, São Paulo, Brazil, explains the background to a longer article published in the current issue of the European Journal of Palliative Care.

Ligia Marçola

Ligia Marçola

Some things in our professional training as doctors change us forever. It was V., a one-year-old boy with multiple malformations, and his mother, R., who showed me how palliative care can make the suffering of a critically ill patient and his family much more bearable. V. lived in a neonatal intensive care unit (NICU) – he had never gone home.

To evaluate when and how palliative care could be given to the patients in V’s unit, we performed a retrospective descriptive study of the medical records of newborns admitted to the NICU of a university hospital where I was a fellow. The newborns had died between 1 January 2012 and 31 July 2014.

Nowadays, thanks to developing technology many more children survive as premature babies, or with other severe conditions and diseases than a few years ago. But they sometimes survive with important sequelae and limitations and can be a very heavy burden to their parents and society, not to mention their own suffering. Palliative care can change this, especially when it comes to helping healthcare teams and families to decide not to extend lives that most probably would end in much suffering or in a sad death, but instead to help babies to have more dignified care at the end of life.

But in most NICUs around the world, there’s still much to do to make palliative care a reality and to deliver this care properly. And that was exactly what we found in our NICU. Among 49 children that died in this period, all had very serious health conditions diagnosed before their birth, or very soon after their admission to the NICU. (These were mostly prematurity, ligiamalformations and genetic syndromes, as this hospital is a national reference centre for these conditions). It was obvious that all the children needed palliative care, but only 20 per cent of them received such care. Of the 12 children who did not receive cardiopulmonary resuscitation (CPR) at the time of death, only eight were in palliative care.

We also found:

  • Lack of discussion with parents (80 per cent of cases), and an even greater lack of discussion between professionals at multidisciplinary meetings (only 16 per cent of cases). However, there is a possibility that discussions had not always been recorded in the medical notes.
  • Lack of access to psychological support for parents (22 per cent of them received it).
  • Ineffective treatment of pain, as evidenced by the 65 per cent of children with altered pain scales.
  • Very common use of invasive procedures and devices.

The authors and the healthcare team are aware of the need to expand and improve palliative care for children admitted to this NICU, so that they receive the best possible treatment, whether or not they survive, and so that parents also receive adequate support. 

May what I learnt from the story of V. continue to inspire us.


Wright V, Prasun MA, Hilgenberg C. Why is end-of-life care delivery sporadic? A quantitative look at the barriers to and facilitators of providing end-of-life care in the neonatal intensive care unit. Adv Neonatal Care 2011; 11: 29–36.

Barbosa SMM, Lima e Souza J, Bueno M et al. Particularidades em cuidado paliativo: período neonatal [Particularities in palliative care: the neonatal period]. In: de Oliveira RA. Cuidado Paliativo. [Palliative Care] São Paulo: Conselho Regional de Medicina do Estado de São Paulo, 2008.

coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Evaluating palliative care in a neonatal intensive care unit in São Paulo, Brazil’ by Ligia Marçola, Rita TV Polastrini, Ivete Zoboli, Maria Esther J Ceccon and Silvia Maria M Barbosa published in the September/October 2016 edition of the European Journal of Palliative Care (vol. 23.5).

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

You can read more about children’s palliative care in the current series that we are publishing on the EAPC Blog.

Posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, European Journal of Palliative Care, PATIENT & FAMILY CARE | Tagged | Leave a comment

EAPC Paediatric Taskforce is reborn

Today, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, we launch a special series about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

Lizzie Chambers, Joint-chair of the (EAPC) Paediatric Taskforce, and Development Director of Together for Short Lives, UK, sets the scene . .  . 

Lizzie Chambers

Lizzie Chambers

We have much to be proud of in the children’s palliative care sector and how far it has developed since its beginnings in the 1980s. We owe a huge debt of gratitude to the many professionals who have established the speciality and to the organisations that have championed the cause of children’s palliative care.

Not least among these is the Maruzza Foundation that has led the EAPC’s paediatric work over the past few years, including the development of IMPaCCT standards (International Meeting for Palliative Care in Children,Trento) for Europe.  We will hear more from the Maruzza Foundation and their new international Charter in the next blog post in this series.

As a former trustee of the International Children’s Palliative Care Network (ICPCN), it had always been very apparent to me that whilst other regions of the world had flourishing children’s palliative care networks, there was no such inclusive network in Europe.

It was suggested that we set up a new Paediatric Taskforce to build a new group that would enable professionals and organisations across Europe to share their learning and experiences of establishing and providing children’s palliative care.

Never one to say ‘no’, and having recently stepped down from the Board of ICPCN, I agreed to take on the co-chairing of this new Taskforce together with Dr Finella Craig, Children’s Palliative Care Consultant at Great Ormond Street Hospital (UK).

The Taskforce aims to ensure that palliative care for children and young people has stronger representation within the EAPC so that the association can provide one voice across Europe for palliative care for all age groups.

Aims and objectives of the EAPC Paediatric Taskforce

  1. To bring together a network of the wide range of professionals working to develop children’s palliative care in European countries and provide opportunities for sharing of information, research, education and advocacy.
  2. To support the development and dissemination of the evidence base in children’s palliative care through identification of specific workstreams leading to published guidelines and standards.
  3. To provide educational opportunities for those working in children’s palliative care through the development of paediatric sessions at EAPC events.
  4. To support the development of palliative care for children and young people across Europe, through advocacy and awareness-raising, signposting organisations to the support offered by children’s palliative care organisations around the world.

Our first task is to begin to build a directory of children’s palliative care services in Europe. If you would like to be included in this directory, please do contact us EAPC@togetherforshortlives.org.uk

We look forward to meeting with you over the coming months, at our stands at the Maruzza Foundation Children’s Palliative Care Conference in Rome in November 2016 and at the 15th EAPC World Congress in Madrid in May 2017 (see links below). Please do come and say hello!

Links and resources

Follow the EAPC Blog for more posts in this series. Next week, Giovanna Abbiati of the Maruzza Foundation writes about the Trieste Charter.



Posted in CHILDREN'S PALLIATIVE CARE, EAPC ACTIVITIES, EAPC Taskforces/special projects | Tagged | Leave a comment

An investigation into palliative care education in UK medical schools

Dr Steven Walker, Director, St Gilesmedical, London and Berlin, explains the background to his longer article selected as Editor’s Choice in the October edition of Palliative Medicine.

Dr Steven Walker

Dr Steven Walker

This article arose out of an interest in medical education and palliative care, a chance conversation and a fortuitous presentation at a scientific meeting.

I am Director of a medical education and communication company based in London and Berlin. Our team is involved in preparing medical and regulatory documents, designing educational outputs and delivering meetings for healthcare professionals and patients.

My interest in palliative care stems from a previous life in clinical oncology. It always seemed strange to me that a door appeared to exist between treatment delivered with the hope of cure and that administered for the relief of symptoms at the end of life. Many involved in the former were reluctant to accompany their patients on the next part of the journey, and when they did, were poorly prepared to do so. Surely there should be a continuum delivered by a connected team of specialists? One reason for this is likely to be our hospital-based system of specialities. A chance discussion with a final year medical student at one of our largest universities suggested that another factor might be limited training in palliative and end-of-life care across the UK.

As part of my Master’s in Medical Education degree course at the University of Dundee, I decided to look at palliative care education for my dissertation subject. I developed a questionnaire intended for palliative care specialists and presented my plans to the Association for Palliative Medicine Special Interest Forum for Undergraduate Medical Education. The delegates suggested that I make contact with Professor Bee Wee and colleagues who were planning to undertake a survey of palliative care training across UK medical schools. This built on a previous survey conducted in 2000/2001.1 Subsequently, I had the privilege of working with this eminent group of hospital specialists in developing a new survey tool and analysing a mass of data from palliative care organisers at all 30 UK medical schools. This resulted in the current paper in Palliative Medicine and another article, soon to be published, in the same journal.2,3 The authors are preparing a third and final manuscript detailing the personal views of course organisers that contain a number of insightful comments.

The message from these data can be summed up as showing improvement in undergraduate palliative care education since the previous survey. While some units are delivering excellent training, there is variation in funding, course evolution and organisation, teaching time, depth of coverage, the degree of meaningful patient contact and assessment of learning across institutions. These factors may have implications for the delivery of effective palliative care education for medical students.


  1. Field D & Wee B. Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools 2000-2001. Med Educ. 2002; 36 (6): 561-567.
  2. Walker SJ, Gibbins J, Barclay S, et al. Progress and divergence in palliative care education for medical students: a comparative survey of UK course structure, content, delivery, contact with patients and assessment of learning. Palliat Med. October 2016; 30 (9): 834-842. First published 4 February 2016 doi: 10.1177/0269216315627125
  3. Walker SJ, Gibbins J, Paes P, et al. Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools. Palliat Med. Accepted 27 August 2016.


9-coverRead the full article in Palliative Medicine
This blog post relates to the longer article, ‘Progress and divergence in palliative care education for medical students: a comparative survey of UK course structure, content, delivery, contact with patients and assessment of learning’, published in Palliative Medicine 2016, Vol. 30(9) 834-842. First published on 4 February 2016 doi: 10.1177/0269216315627125.

Download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read more Editor’s Choice posts on the EAPC Blog.

Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, Palliative Medicine: Editor's Choice, RESEARCH | Tagged | Leave a comment

Qualitative research interviews – can talking help?


Maureen Coombs, Roses Parker and Kay deVries, who at the time of this study were researchers at Victoria University of Wellington, New Zealand, explain the background to their longer article published in the latest edition of the European Journal of Palliative Care.

Professor Maureen Coombes

Professor Maureen Coombs

As clinicians, we have long known the importance of sitting with someone, being present and listening to another’s story. We know the benefits to patients and families of giving space at the bedside for them to talk about their experiences, their fears, and concerns. So is there a similar benefit for patients and families when they sit with researchers and talk about events, especially when it concerns what has happened at end of life or at the time of someone’s death?

This was the question raised when, as researchers in end-of-life care, we came together at a planning meeting for a recent research study. We became thoughtful about the patients and families we had interviewed over the years. We discussed how research participants often expressed relief that they could talk about their experiences, about a death, and about the deceased. We wondered whether talking with them during a research interview had actually helped them in any way. This became the stimulus for our paper.

To explore this idea, we undertook secondary analysis using qualitative interviews from three previously conducted end-of-life and bereavement studies from England and New Zealand. We re-analysed these interviews to identify whether there was any positive benefit for participants in being involved with qualitative interviews. We found that patients and families spoke about how being part of an interview and talking about death and dying brought them different types of benefits.

Participants made reference to how talking with researchers helped talk about distressing events surrounding the death, brought greater understanding of their own end-of-life experiences and knowing that, through the research, these would help others. Talking with the researcher also provided a source of comfort through being with another person after the death of their family member.

We are not claiming qualitative research interviews are providing counselling or psychotherapy: that would be disrespectful to the participants; to the skilled staff that provide such professional services; and to the research process and outcome itself. However, we are saying that those who consent to be interview for research purposes may find benefit in this process, and this is interesting given the usual concerns of research bringing potential to harm participants.

Clearly, ethical and practical safeguards are needed given the nature of what might be disclosed in research interviews. These should not only support the participant but also address potential risks to the researcher in the field. Some of these safeguards are very practical and, as detailed in the paper, focus on the set up of the research interview and includes how the research interview (and interviewer) can stay focussed, compassionate and research aware, and how interview closure is achieved.

This is clearly a small study in a developing area, yet in expanding our understanding of  qualitative research interviews and the potential benefits to participants, we are moving to a more informed position. Risks to bereaved participants involved in qualitative research interviews are frequently cited. However, our studies demonstrate that when participants are interviewed by researchers with developed communication skills, the therapeutic benefits of engagement in qualitative research interviews with this participant group, outweigh the risk.

coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Can qualitative research interviews have therapeutic benefit for participants in end-of-life and bereavement research? By Maureen A Coombs, Roses Parker and Kay deVries, published in the September/October 2016 edition of the European Journal of Palliative Care (vol. 23.5).

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

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

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

Project Estar ao Seu Lado: Living with total pain in Brazil

10052_voices_for_hospices_logoIn this special post to celebrate World Hospice and Palliative Care Day tomorrow, Santiago Rodríguez Corrêa, a family physician, and Carla Mazuko, a nurse, from Project Estar ao Seu Lado, Brazil, pick up the theme of this year’s event: ‘Living and dying in pain: it doesn’t have to happen’.

Santiago and Carla describe the challenges they face in providing systematic palliative care in a community centre in Brazil. The team works in a specific territory and community and offers palliative care to people who need it through weekly outpatient appointments, domiciliary visits, and an out-of-hours telephone helpline.  

Left to right: Dr Santiago Rodríguez Corrêa and Carla Mazuko

Left to right: Dr Santiago Rodríguez Corrêa and Ms Carla Mazuko

A patient with kidney cancer with metastasis: he has increasingly severe pain, needs opioid rotation from morphine for methadone and has social and financial problems.

A patient with cancer of the cervix: she has urinary incontinence and does not eat because she needs to buy incontinence pads.

A patient with esophageal cancer: he is a drug addict and refuses admission to hospital in the final stages of his illness because he owes money to his dealer.

Another patient with final stage chronic obstructive pulmonary disease (COPD) fears the end of life with existential and spiritual needs. His dyspnea gets worse when he remembers that some of his daughters have abandoned him.

And yet another, a  psychiatric patient, discovered her rectal cancer immediately after she had been raped. She has never accepted the colostomy bag and becomes a very aggressive person.

All the patients described above have so much in common. They are living with total pain and they are typical of the patients that our team supports every day.

Total pain is a concept, originally developed by Cicely Saunders, which recognizes pain as being physical, psychological, social and spiritual. She saw beyond the physical, the objective, the palpable pain. In primary palliative care, maybe more than in other situations, it is essential to see below the surface. Social/economic, physical, psychological and spiritual needs are red flags that warn us of impending danger. From the point of diagnosis, each patient’s suffering is unique and their needs are many.

The World Health Organization (WHO) defends the idea that palliative care should be offered early on for all life-threatening illnesses in all levels of care, with special attention to policies to develop primary palliative care within community centres.

Members of the team, Project Estar ao Seu Lado, taking part in a World Hospice and Palliative Care Day event in 2015

Handicraft project for World Hospice and Palliative Care Day 2015. Pictured are ‘Community Health Agents’ who are members of the team and a part of the Family Health Strategy – national policy for primary care in Brazil.

Brazil has started to talk about the need for palliative care in primary care but it ‘speaks softly’ and does not even recognise the red warning flags. The patients described above have so much in common. They are living with pain, and sometimes see death as the only way out of a situation that lacks any kind of structure and resources.

Sadly, we can’t simply follow the example of the best palliative care centres around the world and try to apply it here, for example by assuming that we can use high-cost opioids. To do that would be unrealistic and would disregard the 18 per cent of our population who live in total poverty.

In Brazil, even if morphine is prescribed, the cost is unaffordable for many people. Most of our patients live in extreme social and economic conditions and many have to choose between eating (when they do have something to eat) and taking morphine (when prescribed).

Many of the people we support are living with severe conditions and disabling pain that pierces the soul and represents total pain in all its fullness. We accept this challenge and despite some hard and sad times, we are by their side trying to alleviate their journey of suffering until the end. We urgently need a public health end-of-life care approach adapted for Brazil to alleviate the real day-to-day pain of our population.

Links and resources

Read more about World Hospice and Palliative Care Day on the EAPC Blog.

Posted in ADVOCACY & POLICY, Opioid access | Tagged , | 2 Comments

The EAPC Spiritual Care Taskforce survey: How do palliative care professionals currently understand spiritual care?

Dr. Bella Vivat, PhD, Senior Research Associate in the Marie Curie Palliative Care Research Department at University College London, UK, and Co-Lead of the Implementation Subgroup of the EAPC Spiritual Care Taskforce 

Dr Bella Vivat

Dr Bella Vivat

My main research interest since I conducted an ethnographic study exploring spiritual aspects of care in a Scottish hospice for my PhD has been spiritual care and spiritual wellbeing in palliative care. I am increasingly engaged by the interweaving and overlapping challenges that this field presents for both research and practice.

One particularly interesting issue is that little is known about care providers’ understandings of spiritual care, nor about how they implement guidelines for spiritual care in practice. As co-lead of the implementation subgroup of the EAPC Spiritual Care Taskforce (SCTF), together with M. Teresa Garcia-Baquero Merino, and with help from Teresa Young, I therefore developed a survey to explore how palliative care professionals currently understand spiritual care.

The survey went live on the EAPC website in April 2016. When it closed a month later it had been completed by 527 people – a truly fantastic response!  We are extremely grateful to everyone who completed the survey for their time, and in-depth engagement with the questions.

I presented initial findings on the sociodemographic characteristics of the respondents at the Open Meeting of the SCTF at the EAPC World Research Congress in Dublin in June 2016. Participants were 68% female, and 65% engaged in personal religious or spiritual practice. They worked across the world, from Northern Europe (42%), to Africa (1%) and Central and South America (3%). That presentation is now available to view on the SCTF website.

The comments and information provided are rich, detailed and fascinating, and we are looking forward to beginning an in-depth qualitative analysis soon. Once we have completed that content analysis, we will test hypothesised relationships between the sociodemographic characteristics of the participants and the examples of spiritual care they provide. For example, we will be looking at whether the examples given by older participants are more religiously oriented than those given by younger participants.

We would value suggestions for other hypotheses about relationships between participants’ sociodemographic characteristics and the responses they provide, which we could also test. Please do email me if you have any hypotheses to suggest.

EORTC measure of spiritual wellbeing

I am also presently co-Principal Investigator (jointly with Teresa Young) on an international project developing and validating a measure of spiritual wellbeing for people receiving palliative care for cancer: the EORTC QLQ-SWB32.1;2 We recently completed initial analysis of the validation study and hope to publish soon.

The validated EORTC QLQ-SWB32 is a means for assessing outcomes from interventions intended to address spiritual issues. A tool like this, also, unavoidably, offers a way to “open the door”, or begin interventions, or conversations relating to spirituality or spiritual wellbeing, with people receiving palliative care, who often wish to discuss such matters with their care providers.3 However, some clinicians find that initiating such discussions is challenging.4 The EORTC QLQ-SWB32 enables respondents to reflect on the issues it presents, and then indicate those which are most important for them. This is then a starting point for care providers to engage in relevant discussion.

We are beginning studies with colleagues in Norway, Denmark, and the UK, to explore using the EORTC QLQ-SWB32 in clinical practice.

We are always open to new ideas and suggestions for collaborations; please just email me if you have any ideas for research and/or clinical projects using our tool.


  1. Vivat B, Young T, Efficace F et al. (2012). Cross-cultural development of the EORTC QLQ-SWB36: A stand-alone measure of spiritual wellbeing for palliative care patients with cancer. Palliative Medicine, 27: 457-69.
  2. Vivat B, Young T, Winstanley J et al. (2014). Cross-cultural development of a spiritual wellbeing measure for cancer patients receiving palliative care. Abstract selected for plenary presentation, 8thResearch Congress of the European Association for Palliative Care (EAPC), Lleida, Spain, June 2014.
  3. Best M, Butow P, Olver I (2015).Do patients want doctors to talk about spirituality? A systematic literature review. Patient Education and Counseling, 98: 1320–8.
  4. Kristeller JL, Sumbrun CS, Schilling RF (1999). ‘I would if I could’: how oncologists and oncology nurses address spiritual distress in cancer patients. Psycho-oncology, 8(5): 451-8.


Posted in EAPC Taskforces/special projects, SPIRITUAL CARE | Tagged , | 2 Comments

Online learning in palliative care: A review

On 17 October, a new, free online palliative care course will launch. Register now!

Dr Sean Hughes, Dr Nancy Preston, Dr Sandra Varey and Prof Sheila Payne, International Observatory on End of Life Care, Lancaster University, UK, tell us more in this background post to their longer article published in the September/October edition of the European Journal of Palliative Care.


Left to right: Dr Nancy Preston, Dr Sandra Varey, Dr Sean Hughes and Prof Sheila Payne

The Internet age provides great learning opportunities in all manner of topic areas and palliative care is no exception. But what is the current state of play and how do we measure impact? What kinds of courses or modes of delivery are available, and is online learning effective at improving professional practice?

InSup-C – a European Union-funded project examining integrated palliative care in advanced cancer and chronic disease – aimed to use online learning to highlight good practice and disseminate study results. Our first step was to scope the literature to establish the options available and to develop our plans.

We found an expanding and fast-paced field with a bewildering range of educational approaches. Some of these were blended online tuition with classroom teaching in standard college or university degrees. Others were stand-alone units or short modules with no teacher or tutor input. There were many examples of these in the palliative and end-of-life care field. These included the well-known e-ELCA (e-learning programme End of Life Care for All) managed by Health Education England in partnership with the Association for Palliative Medicine of Great Britain and Ireland (APM), and others such as LearnZone provided by Macmillan Cancer Support.

Most online learning aimed at professionals did not evaluate how effective the learning had been in enhancing practice. Despite this, research suggests that it is no longer a question of if online training of health professionals should be pursued but how and when these learning techniques should be used.1

The findings from our review helped the InSup-C team to think about how we might best use our results and which audience(s) to target. Our first thought was to design an e-learning module aimed at health professionals across Europe, but we knew that we would not be able to update and moderate this beyond the end of the project in late 2016, and that access to others would be limited. Then came the MOOC – a ‘massive open online course’!

Our MOOC, Palliative Care: Making it Work (hosted by Lancaster University), will run from 17 October 2016 for three weeks. It is free and open to all with an interest in palliative and end-of-life care. It contains materials and resources: short lectures; reading; video clips of model practice in integrated care from the study sites around Europe; discussion and debating opportunities . . . and much more. So far, almost four thousand people have registered representing every continent and ensuring that the results and recommendations from InSup-C have a global reach.

Please join us – register here! Our review findings are reported in more detail in the current edition of the European Journal of Palliative Care.

Cook DA, Levinson AJ, Garside S et al. Internet-based learning in the health professions: a meta-analysis. JAMA 2008; 300: 1181–1196.

coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Online learning in palliative care: where are we up to? by Sean Hughes, Nancy J Preston, Sheila A Payne, published in the September/October 2016 edition of the European Journal of Palliative Care (vol. 23.5). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts from members of InSup-C on the EAPC Blog

You can also read about the e-ELCA e-learning opportunity in Prof Christina Faull’s earlier post on the EAPC Blog.

Posted in EAPC COLLABORATIVE PROJECTS, EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care, InSup-C (integrated palliative care) | Tagged | 2 Comments