Opening the door for discussing spiritual wellbeing: Implementing spiritual care in palliative 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

Spiritual care and spiritual wellbeing are central to palliative care, with growing interest in these topics in recent years. I have been absorbed in this fascinating and challenging field since the late 1990s, when I conducted an ethnographic PhD study, exploring spiritual aspects of care in a Scottish hospice.1 A few years later, I began as Co-Principal Investigator (jointly with Teresa Young2) on an international cross-cultural project, developing and validating the EORTC QLQ-SWB32: a measure of spiritual wellbeing for people receiving palliative care for cancer.3;4

Validation data collection was completed in 2014, with 451 participants in 14 countries, using ten languages. Attendees at the EAPC World Research Congress in Lleida in 2014 may remember that I presented initial findings from this final phase of our study in the opening plenary of that meeting.4 We are about to submit our paper discussing the overall validation findings for journal publication. More detailed analysis is ongoing.

I am presently on a research visit to the University of Agder, Kristiansand, Norway, invited by Gudrun Rohde – Associate Professor, and Norwegian collaborator on the EORTC QLQ-SWB32 validation study – to present and discuss the EORTC QLQ-SWB32, spiritual care, and spiritual wellbeing with colleagues at the University and the local palliative care team. With these Norwegian colleagues, as with other interested individuals and groups internationally, we are exploring possibilities for using the EORTC QLQ-SWB32 in clinical practice, including non-cancer conditions, and related research.

Participants taking part in a presentation on spiritual care and spiritual wellbeing during Bella’s research visit to the University of Agder, Kristiansand, Norway

Participants in a presentation on spiritual care and spiritual wellbeing during Bella’s research visit to the University of Agder, Kristiansand, Norway

The EORTC QLQ-SWB32 functions as a way to ‘open the door’, or indicate interest in spiritual wellbeing issues, which can sometimes be difficult to bring up in conversation with patients. A tool like this, by presenting possibly relevant issues in writing, initiates reflection by respondents, who can then indicate those particular issues which they feel most important. These issues can then be discussed further in later conversations. We would be delighted to hear if anybody has any ideas for research and/or clinical projects using the EORTC QLQ-SWB32 – please do email me if so.

EAPC Spiritual Care Taskforce survey – please take part!

As co-lead of the implementation subgroup of the EAPC Spiritual Care Taskforce,5 and more widely, I am increasingly engaged with the multiple issues which spiritual care and spiritual wellbeing present for care, clinical practice, and research, and how these interweave and overlap.

Although national and international guidelines for spiritual care have been produced, little is known about their implementation, nor the detail of which activities caregivers currently understand as comprising spiritual care. I have developed a survey to explore the understandings of spiritual care of EAPC members, together with M. Teresa Garcia-Baquero Merino6 (implementation subgroup co-lead), and Teresa Young. Our survey went live on the EAPC website in early April, and gratifyingly more than 400 people have already responded!

We would be thrilled if we could reach 500 responses, or even more – even if data analysis would likely become rather longer and more complex than originally anticipated!

The survey is open until Thursday 5 May, so you could still help us reach 500 responses by following this link.

References and links

  1. Vivat, B (2004). The whole and the parts: Spiritual aspects of care in a West of Scotland hospice. Unpublished PhD, University of Edinburgh.
  2. Teresa Young, Mount Vernon Cancer Centre, Northwood, Middlesex, UK
  3. 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.
  4. Vivat B, Young T, Winstanley J et al. (2014). Cross-cultural development of a spiritual wellbeing measure for cancer patients receiving palliative care. 8th Research Congress of the European Association for Palliative Care (EAPC), Lleida, Spain, June 2014.
  5. Nolan S, Saltmarsh P, Leget C (2011). Spiritual care in palliative care: working towards an EAPC Task Force. European Journal of Palliative Care, 18(2): 86-90.
  6. M. Teresa Garcia-Baquero Merino, Regional Palliative Care Office, Madrid, Spain.

EORTC Quality of Life Group page on EORTC QLQ-SWB32.

EAPC Spiritual Care Task Force.

 

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Are you coming to the 9th EAPC World Research Congress?
Look out for members of the EAPC Spiritual Care Task Force who will be in Dublin for the congress. Dr Bella Vivat will also be presenting her poster: “What Do Previously Homeless People in London, UK, Think about Advance Care Planning (ACP) and End of Life Care (EOLC)? A Qualitative Investigation”.

9th EAPC World Research Congress, Dublin, Ireland 9-11 June 2016. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl

 

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Palliative Care in North Africa and the Middle East: Experiences from Egypt

In October 2015, the World Health Organization Eastern Mediterranean Region (WHO EMRO) organised the third ‘Train the Trainers’ workshop about palliative care. As a special adviser to the WHO EMRO, Prof Sheila Payne met leaders in palliative care from the region and invited them to contribute to this special series on palliative care in North Africa and the Middle East.  

Today, we hear from Dr Samy Alsirafy, Professor of Clinical Oncology, Palliative Medicine Unit, Kasr Al-Ainy Center of Clinical Oncology & Nuclear Medicine, Kasr Al-Ainy School of Medicine, Cairo University, Cairo, Egypt.

Dr Samy Alsirafy

Dr Samy Alsirafy

In the early 2000s, Mr MA was one of the patients included in the study of my PhD in oncology. He was a recently married farmer from a village in Beni-Swif, around 90 km south of Cairo. Unfortunately, he did not respond to treatment and was receiving the best possible supportive care for his terminal cancer. During his terminal illness, I did my best to control his symptoms and helped in addressing his psychosocial and spiritual issues. He missed a follow-up appointment with us and after a few weeks, his brother came to visit me at the cancer centre and told me that MA had died at home. The brother gave me one of the gifts that I will never forget. MA, while dying, had asked his brother to come to me after his death to say “Thank you”. I did not expect that feedback from MA and his family.

My experience with MA and other dying cancer patients led me to believe that a specialized terminal care service was needed for dying cancer patients in Egypt.

Physicians of the Palliative Medicine Unit of Kasr Al-Ainy. From left to right: Wessam Elsherief, Samy Alsirafy, Dina Farag and Catherine Atallah

Physicians of the Palliative Medicine Unit of Kasr Al-Ainy. From left to right: Wessam Elsherief, Samy Alsirafy, Dina Farag and Catherine Atallah

In 2008, the first university hospital-based palliative medicine unit (PMU) was established at Kasr Al-Ainy School of Medicine – Cairo University.1 Currently, more than 600 new patients are referred annually to the PMU; the morphine consumption increased gradually at our cancer centre and had exceeded three kilograms/year before the morphine shortage crisis in Egypt.2, 3 The service is provided through an outpatient clinic held six times a week with an average of 22 consultations per clinic. In addition, there are two other models of service provision, inpatient beds and home care. The home care is provided in collaboration with a local home care service. Research is a priority of the PMU and focuses on assessing the needs of palliative care patients, development of culturally sensitive palliative care models and overcoming barriers to palliative care and cancer pain control in Egypt.

There is a rising awareness of the importance of palliative care in Egypt, especially among cancer care professionals. However, very few palliative care services exist and these are mainly for cancer patients. Palliative care development is slow and is faced by many obstacles. For example, the very low consumption of opioids in Egypt indicates highly inadequate cancer pain control.3 The current restrictive regulations limit significantly the access of cancer pain patients to opioids, especially morphine.4 This is further complicated by the unavailability of essential opioids such as immediate-release oral morphine; and the negative attitude towards tramadol, the only weak opioid available in Egypt.3, 5

Palliative care in Egypt has a long way to go. There is a need to develop culturally sensitive palliative care delivery models suitable for the country’s resources. Home care models are a priority because the majority of Egyptian cancer patients die at home.1  The opioid restrictive regulations should be revised and affordable opioids should be made available in Egypt. Palliative care education at all levels is necessary, as well as governmental support.

References

  1. Alsirafy SA, El Mesidy SM, Abou-Elela EN. Where do Egyptian palliative care patients with cancer die? Am J Hosp Palliat Care, 2010; 27(5): 313-315.
  2. Alsirafy SA, Ibrahim NY, Abou-Elela EN. Opioid consumption before and after the establishment of a palliative medicine unit in an Egyptian cancer center. J Palliat Care, 2012; 28(3): 135-140.
  3. Alsirafy SA, Farag DE. A shortage of oral morphine in Egypt. Bull World Health Organ, 2016; 94(1):3.
  4. Alsirafy SA, El Mesidy SM, El-Sherief WA, et al. Opioid needs of patients with advanced cancer and the morphine dose-limiting law in Egypt. J Palliat Med, 2011; 14(1): 51-54.
  5. Alsirafy SA, Saleh RN, Fawzi R, et al. The fear of using tramadol for pain control (tramadolophobia) among Egyptian patients with cancer. J Opioid Manag, 2015; 11(6): 474-480.

Note: For reasons of patient confidentiality, the patient’s name has been changed. 

Read more posts in this series
Click here to read our first post in this series from Dr Nahla Gafer in Sudan. Next week, Dr Sami Ayed Alshammary will be writing about palliative care in Saudia Arabia.

 

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In their own words – The colourful life of hospice and palliative care volunteers in Europe

Ros Scott and Leena Pelttari, Co-Chairs of the European Association for Palliative Care (EAPC) Task Force on Volunteering in Hospice and Palliative Care, introduce an exciting new project where hospice volunteers will tell their stories.

Left to right: Ros Scott and Leena Pelttari, Co-Chairs of the EAPC Task Force on Volunteering in Hospice and Palliative Care

Left to right: Ros Scott and Leena Pelttari

Volunteers play an important role in hospice and palliative care in so many different ways. Whether supporting patients and their families or helping with administration and fundraising there are so many wonderful examples of the humanity of people reaching out to others. So often, we hear descriptions of how many volunteers there are, what they do, what motivates them and how they are managed. We talk about volunteers but how often do we hear the stories of the volunteers themselves, in their own words?

Exchanging experiences: Workshop at the Symposium in Vienna, April 2015

Exchanging experiences: Workshop at the Symposium in Vienna, April 2015

Thinking about this prompted the EAPC Task Force on Volunteering in Hospice and Palliative Care to launch an exciting new project, the Stories Project, to gather stories about volunteering from the volunteers themselves and from volunteer managers. It was at our last Symposium in Vienna in April 2015, the ‘Colourful Life of Hospice Volunteers’, that we first launched the idea for the Stories Project. The response was very positive and the experiences shared by the volunteers were both moving and inspiring.

The Stories Project, therefore, aims to gather stories from hospice and palliative care volunteers from different countries to tell us about their life as a volunteer in their own words and language. Ideally, we would like to find five volunteers from each country. We would like to know what they do as a volunteer in hospice and palliative care and what volunteering means to them.

Colourful lives of volunteers in Europe: Participants’ stories were written on coloured cards to link to the title of the symposium

Colourful lives of volunteers in Europe: Participants’ stories were written on coloured cards to link to the title of the symposium

We also plan to collect stories from two members of staff who manage volunteers from the same countries and we would like to hear from them what their role involves, what volunteers mean to their organisation and what working with volunteers means to them. Once all the stories have been collected they will be published in the language spoken by the volunteer or volunteer manager alongside an English translation.

Key points from all stories will be summarised to give an overview of volunteering from the volunteer and management perspective. We hope to make these available through a link on the EAPC Task Force web page and some may be published occasionally through the EAPC blog and ehospice. If funding permits, some of these may be published in print form.

The stories that we collect will help us to understand more about why volunteers do what they do, how they experience volunteering and what it means to them to be a volunteer in hospice and palliative care. We hope that they will help to build a sense of a volunteering community and also inspire others to develop new ideas and areas of practice.

If you would like to get involved please do email us: Ros Scott (r.z.scott@dundee.ac.uk) and Leena Pelttari (leena.pelttari@hospiz.at)

More about the EAPC Task Force on Volunteering in Hospice and Palliative Care

The task force was established in December 2013 and has embarked on a range of different projects. This includes a study, carried out by the University of Bonn, with member countries of the EAPC to explore the numbers and roles of volunteers, approaches to management and training, motivation and challenges faced. Other work includes the development of a white paper on the role and identity of volunteers and we are currently in the final stages of developing a Charter for Volunteering in Hospice and Palliative Care in Europe. In addition, we have held a number of international symposia. Attended by volunteers, paid staff and researchers from many different countries, these gave an invaluable opportunity to share knowledge, experience and practice. Read more about the task force here.

You can read more posts on volunteering on the EAPC blog.

 

WRC2016_banner265x80Coming to Dublin for the 9th EAPC World Research Congress?

Please join Ros Scott and Leena Pelttari at the Open Meeting of the EAPC Task Force on Volunteering – Friday 10 June 2016 at 09h00-11h00, Classroom ALE 1.49 in the O’Brien Science Centre, University College Dublin. They’ll also be presenting their poster, Changes in volunteering – what does this mean for hospice and palliative care services in Europe?: EAPC Task Force findings.

Look out for more posters on volunteering at the congress and check out the ‘Meet the expert session’ on ‘Views and Policies of Directors of Health Care and Volunteer Organizations on the Roles of Volunteerism in Palliative Care: A Cross-Sectional Study. A Study Protocol’ by S. Vanderstichelen at 11h00-12h30 on Friday 10 June.

Even if you can’t attend the congress, you can still follow the activities by joining us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl

 

 

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Palliative Care in North Africa and the Middle East: Stories from Sudan

In October 2015, the World Health Organization Eastern Mediterranean Region (WHO EMRO) organised the third ’Train the Trainers‘ workshop about palliative care. As a special adviser to the WHO EMRO, Professor Sheila Payne met leaders in palliative care from the region and invited them to contribute to this special series on palliative care in North Africa and the Middle East.

Opening the series is Dr Nahla Gafer of the Palliative Care Unit at the Radiation and Isotope Center in Khartoum (RICK) in Sudan, in North East Africa.

Dr Nahla Gafar

Dr Nahla Gafer

Ten years into the management of cancer patients and I have never felt so confident and useful to my patients as I have since training in palliative care.

Thanks to Hospice Africa Uganda (HAU), namely Dr Anne Merriman, and my friend Esther Walker, a small palliative care unit has opened at the main oncology centre in Sudan serving a population of more than 25 million people, most of whom live outside the province and present with advanced-stage disease. Having a nine-bed palliative care unit, which also offers a daily outpatient service and weekly home care visits, has dramatically changed the lives of more than 2,000 patients treated in that unit.

I remember Hag Ibrahim, an elderly man from the far west of the country. He spent the last six months of his life travelling around seeking medical care, ignorant of his bad prognosis of hepatocellular carcinoma. I finally persuaded his sons that their father should be told what was happening and they allowed me to tell him. I explained the disease in simple words mentioning its incurability. His reaction was unforgettable. He said, “Thank you, doctor. I have lived enough (80 years). Let’s go boys, we have nothing to keep us in Khartoum.” We discharged him the next day with a follow-up plan. We later heard that he was able to finalize the wedding of his daughters before he died at home.

Our first patient, Rabaa, was an example of how palliative care enabled a breast cancer patient to resume chemotherapy. She was a 40-year-old lady referred because she was “not responding to further chemotherapy”. Her lung metastasis made her breathless. Her last chemotherapy treatment had caused an oral and oesophageal candidiasis. So you can image a lady lying wasted on the bed, breathless, in pain, not eating, and vomiting for several days. After medication (the first time we had used morphine at RICK for breathlessness management), the patient revived in a few days. Back to chemotherapy, and her chest X-ray showed marked regression of her disease. Our relationship with this patient lasted a long time: we gave support and education to the family, and counselling to the husband who told us earlier that he wanted to remarry another woman. Rabaa died a couple of years later but the outcomes were great for us all, for Rabaa and her husband.

An oncology registrar whom I met at the Kuwait workshop, said, “The effect of providing palliative care is priceless.” Yes, how can you measure the price of tranquillity, the price of those last months and days of life? If the patient and family were not slowly introduced to this reality, they would lose those important months running after futile treatment. 

Members of the palliative care team in the oncology centre, Sudan

Members of the palliative care team in the oncology centre, Sudan

A nurse colleague, Halima, who was also fighting for palliative care in another city, was once criticised by colleagues. “Palliative Care, Palliative Care, you gave us a headache without seeing its effects.” Halima calmly replied, “Do you remember the crying patients and the offensive smells from the wards, some time ago. Where are they?” Yes, palliative care changes hospitals dramatically, to the degree you never imagined them before. Her colleagues admitted that she was right.

The fight to have a service is never-ending. But it’s gratifying when you hear patients from the oncology unit say: “When can I come down [to the palliative care unit]?”, or when doctors from outside the hospitals refer patients directly from surgery to palliative care. Even when a co-worker falls in the hospital, they take him to the palliative care unit! And our nurses – after four months of working with us, soaking up the ethos of ‘patient comes first’, ’continuity of care‘, a ‘holistic approach in assessment and management’, and ’hands-on-care‘ – are called ‘doctors’ by the patients. What more recognition is needed?

No incentives from the hospital for extraordinary work, no job promotion after several years of good service and training overseas (in this way I lost a couple of my team members). But those who stay, I know, find job satisfaction in changing the lives of the patients they see, in making a difference in this reality of poverty and disorder.

 

Read more about palliative care in Sudan here.

Coming up in the North Africa and Middle East series: Dr Samy Alsirafy, Professor of Clinical Oncology at the Palliative Medicine Unit, Cairo, writes about his experiences in Egypt next week on the EAPC Blog.

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The Child Without Name – Parents in Grief: Using social media to support bereaved parents


Cliquez ici pour lire la version française

Continuing our special series on perinatal bereavement and palliative care with examples of initiatives from Ireland and France that aim to improve care for babies and families. Today, Nicole Monteville Culas, President of The Child Without Name – Parents in Grief (ESNPE), in France, explains how they are using social media to support bereaved parents and raise awareness of perinatal bereavement.

Nicole Monroeville Culas, President of The Child Without Name – Parents in Grief (ESNPE)

Nicole Monroeville Culas, President of The Child Without Name – Parents in Grief (ESNPE)

ESNPE (L’Enfant Sans Nom – Parents Endeuillés in French), meaning ‘The Child Without Name ­– Parents in Grief’ is an association that helps families to cope with perinatal grief. Founded in 2000, its purpose is to support bereaved parents and to help them confront this particular grief by offering support groups in which they can exchange their experiences with our trained volunteers. ESNPE also aims to raise public awareness of perinatal bereavement, which is still poorly understood and often taboo.

 

Since 2000, ESNPE has offered a website for parents to find out information about perinatal bereavement and their legal rights and obligations in France. There is also news of our activities, such as meetings, conferences and creative workshops, and that of other French associations with whom we try to create a network on the website. An online forum is also available for parents. (See link below).

The rapid development of social networks such as Facebook and Twitter has marked a turning point in the way we communicate. Today, parents affected by this type of grief make use of these ways of communicating in all areas in their daily lives. Therefore, our presence online has become necessary in order to reach as many parents as we can and to guide them to associations that can best support them.

Our Facebook page, opened in 2013, shares the same purpose as our website: To inform our parents of activities about perinatal bereavement in France. It’s also a perfect place to share press releases and videos. Information is accessible to anyone, including those who are not affected by bereavement, and so they too will discover what perinatal bereavement really is. Thus, social networks enable us not only to be there for our parents but also to raise public attention.

Au revoir © David Weyer. Reproduced with kind permission of the artist

Au revoir © David Weyer. Reproduced with kind permission of the artist

One of the many comments on our Facebook page:

“This page allows us to freely remember our precious little ones, to talk about them and to share stories and memories. As bereaved parents, we feel very close to each other because no one else can really understand, it’s a very special bond and we can trust each other. This will also allow me to help and guide people who might, unfortunately, go through this, so that they are not alone, but really supported and listened to.” Abou.

A flower, a life
Our association is also the co-founder and collective member of ‘Une fleur, une vie’ (‘A flower, a life’) that links many groups together. In May, it organises a day of awareness of perinatal bereavement, which is an occasion for parents to honour their baby who ‘left too early’. In 2013, for the launch of this special day, a Facebook page was successfully created providing information for parents. This major event, held annually in Paris, is something that grieving parents look forward to, thanks largely to communication through this page. (See link below).

However, we are cautious about potential abuse; we are very vigilant to ensure that parents who follow us will not be approached, through us, by malicious people who may take advantage of their vulnerability and exploit them.

While social networking has its limits when used to support bereaving parents, it is an essential platform for communication today.

Links . . .

Read more on the EAPC Blog . . .
You can read earlier posts in this series from practitioners in Ireland: Tyrone Horne, Brid Shine, Grace O’Sullivan and Dr Lucia Hartigan and Dr Keelin O’Donoghue and Dr Pierre Béttrémieux from France.

 

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Welcome to Dublin – 9th EAPC World Research Congress, Dublin, Ireland 9-11 June 2016 Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl

 

L’Enfant Sans Nom – Parents Endeuillés: Utilisation des médias sociaux pour soutenir les parents endeuillés

Aujourd’hui, nous reprenons notre série spéciale sur le deuil périnatal et les soins palliatifs avec des exemples d’initiatives qui visent à améliorer les soins pour les bébés et les familles. Nicole Monteville Culas, Présidente de L’Enfant Sans Nom – Parents Endeuillés, explique comment cette association utilise des réseaux sociaux pour soutenir les parents endeuillés et sensibiliser l’opinion publique concernant le deuil périnatal.

Nicole Monteville Culas, Présidente de ‘L'Enfant Sans Nom – Parents Endeuillés’

Nicole Monteville Culas, Présidente de L’Enfant Sans Nom – Parents Endeuillés

L’association ESNPE – L’Enfant Sans Nom – Parents Endeuillés – est une association qui traite du deuil périnatal. Elle existe depuis 2000. Son but est, bien sûr, de soutenir les parents et de les aider à affronter ce deuil particulier en proposant des groupe de parole où les parents échangent entre eux et avec nos bénévoles formés à l’écoute mais aussi de sensibiliser l’opinion publique sur ce deuil qui est encore mal compris et souvent tabou.

L’association a dès 2000 crée un site sur lequel les parents pouvaient retrouver des informations sur le deuil périnatal, sur les droits et devoirs des parents en France mais aussi sur les activités de l’association (rencontres, conférences, ateliers créatifs) et des autres associations françaises avec qui nous essayons de créer un réseau. Un forum a aussi été mis à disposition des parents. (Voir le lien ci-dessous).

Le développement fulgurant des réseaux sociaux (Facebook, Twitter) à marquer un tournant dans notre façon de communiquer. Aujourd’hui les parents touchés par ce deuil vivent au quotidien avec ces moyens de communications et s’y réfèrent à tout moment et dans tous les domaines, notre présence y devenait donc nécessaire pour toucher un maximum de parents et les guider vers des associations à leur écoute.

Notre page Facebook ouverte en 2013 a le même but que le site : informer les parents sur les activités en France autour du deuil périnatal. C’est aussi le lieu idéal pour partager des articles de presse ou des vidéos mais le principe même des partages sur les réseaux fait que nos informations peuvent aussi êtres vues par des personnes non concernées et qui découvrent ce qu’est le deuil périnatal. Ainsi les réseaux sociaux nous permettent dans un même temps d’être là pour les parents et de sensibiliser l’opinion publique. (Voir le lien ci-dessous).

Au revoir © David Weyer, avec son aimable autorisation.

Au revoir © David Weyer, avec son aimable autorisation.

Un des nombreux témoignages sur notre page Facebook: 

“Cette page permet de se souvenir librement de nos chers petits, d’en parler et de partager des témoignages, des souvenirs. Nous nous sentons très proches les uns des autres en tant que parents endeuillés, parce que personne d’autre ne peut vraiment comprendre, c’est un lien très particulier et nous pouvons nous faire confiance. Cela me permettra aussi d’aider et de diriger des personnes à qui cela pourrait encore malheureusement arriver, pour qu’elles ne soient pas seules, mais vraiment soutenues et écoutées.” Abou.

Une fleur, une vie
Notre association est aussi cofondatrice et membre du collectif ‘Une fleur, une vie’ qui regroupe plusieurs associations et organise en mai une journée de sensibilisation au deuil périnatal. Une occasion pour les parents d’honorer leurs bébés partis trop tôt. En 2013, pour la 1ère édition de cette journée particulière une page Facebook a aussi vu le jour avec succès. Elle s’anime comme un événement avec l’avancée de l’organisation pour chaque nouvelle édition. Il s’agit aujourd’hui d’un événement majeur à Paris attendu par les parents endeuillés grâce en grande partie à la communication via cette page. (Voir le lien ci-dessous).

Nous restons cependant prudents. Les dérives existent aussi et nous sommes très vigilants à ce que les parents qui nous suivent ne soient pas approchés par notre intermédiaire par des personnes mal intentionnées qui profiteraient de leur vulnérabilité pour les escroquer.

Les réseaux sociaux sont un moyen de communication incontournable aujourd’hui mais à ses limites dans ses applications lorsqu’on accompagne des parents en deuil.

Pour en savoir plus. . .

 

 

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Posted in BEREAVEMENT, Bereavement, CHILDREN'S PALLIATIVE CARE, PATIENT & FAMILY CARE, SOCIAL MEDIA | Tagged , , | Leave a comment

Making your hospice more research active – where do you start?

Dr Liz Reed is Research Lead at Princess Alice Hospice in Esher, UK, which provides a range of palliative care services to patients and families as well as delivering a thriving education and research programme. Here, she explains the background to her longer article that is published in the March/April issue of the European Journal of Palliative Care.

 

Nursing staff at Princess Alice Hospice: the importance of embedding research into everyday practice

 Nursing staff at Princess Alice Hospice: the importance of embedding research into everyday practice

There is increasing pressure on hospices to be more research active, but if your organisation has not really engaged with research, it’s hard to know exactly where to start. Back in 2013, when I joined Princess Alice Hospice, the research activity was predominantly recruiting for studies run by external researchers, and academics or staff members undertaking their MSc. degrees.

We wanted to think about how we could promote research more widely throughout the hospice, as well as adding to the wider palliative care knowledge base. We decided to adopt a strategic approach to begin to develop as a research active organisation. Our three- to five-year research strategy was the basis from which we started to look at different ways to engage staff from around the organisation in research and increase our research activity in a more systematic way.

I undertook a rapid appraisal of the literature on psychosocial research in palliative care over the previous ten years, identifying the relevant key literature reviews. I then presented this as a part of a multiprofessional workshop, identifying key themes and gaps in knowledge.

Through debate (sometimes heated!) and discussion we developed a consensus to take forward three themes: Health promotion and palliative care, non-malignant disease and partners and families. We are very proud that we now have current and planned projects in all three prioritised themes.

In order to ‘demystify’ and promote the hospice as research active, other developments were needed to encourage and support staff to engage in research, including:

  • journal clubs
  • a programme of research seminars
  • active encouragement of representation from different disciplines on research project steering groups
  • quarterly research newsletters
  • accessible training on research methods.

We still have a long way to go and are learning all the time, but we have been encouraged by how the organisation is really beginning to embed research into everyday practice and see it as positive and valuable rather than a challenge.

When I started I was, not surprisingly, faced with some well-meaning paternalism from busy clinicians protecting their patient from unnecessary intrusion. But I have definitely noticed slow, steady and subtle changes over the past two years. A simple example is when nurses and doctors approach me directly to tell me they have the perfect patient for a study I am recruiting for. It makes my day!

The paper published in the March/April edition of the European Journal of Palliative Care describes in more detail our experience of developing a research active hospice.

I still feel very much that we are only starting out, but would welcome discussion with others who have developed, or are aiming to develop their hospice as more research active.

Dr Jennifer Todd and I will be presenting a poster on the study at the 9th World Research Congress of the European Association for Palliative Care in Dublin: Can a palliative care education intervention improve and sustain participants’ confidence and professional development in palliative care and does this translate to care delivery? So if you are attending, please come and find us! 

EJPC232coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Development of a hospice research strategy through organisational consensus by Elizabeth Reed and Jennifer Todd, published in the March/April 2016 edition of the European Journal of Palliative Care (vol. 23.2).

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.

 

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Palliative care in perinatal medicine: Meeting the newborn child, valuing the child’s lifetime, emergency bonding


Cliquez ici pour la version en française

Continuing our special series on perinatal bereavement and palliative care with examples of initiatives that aim to improve care for babies and families. Dr Pierre Bétrémieux, Honorary Consultant, Rennes Teaching Hospital, France, explains some of the key issues and challenges in providing perinatal palliative care.

 

Dr Pierre Bétrémieux, Honorary Consultant, Rennes Teaching Hospital, France

Dr Pierre Bétrémieux, Honorary Consultant, Rennes Teaching Hospital, France

Perinatal palliative care concerns newborn children affected by a life-threatening condition, the extremely premature newborn babies for whom technical care is impossible, or not wished before 24 or 25 weeks’ gestation, and the newborn children admitted to intensive care units whose severe conditions are incompatible with an acceptable quality of life. At the same time, this definition thus includes children who will die from an incurable condition and those who will die because we decide to withdraw or withhold some treatments.

Palliative care aims to respect the newborn child by valuing his/her lifetime regardless of weight, term, appearance or pathology. The palliative approach also aims to contribute to the emotional impact of the birth of the child by valuing the baby’s meeting with his/her parents and other family members; by facilitating the attachment, the memories and later the bereavement of the parents, the siblings, and possibly the more distant family.

In situations where there are life-threatening malformations, the couples who do not choose a medical termination of the pregnancy will gradually work through a palliative care birthing plan with the maternity ward professionals (midwife, obstetrician, and pediatrician). Whatever the type of the diagnosed malformation, there are several uncertainties. There is the risk of death in utero, which would make the meeting with the living child impossible; the ability of the foetus to tolerate labour which raises the question of foetal monitoring during labour and therefore the question of the caesarean section if needed for the baby, and the condition of the child at birth, which raises the question of the level of possible care delivered to the baby. The uncertainty also concerns the extent, the level of severity and the impact of the malformation on the child’s life, such as physical comfort and life expectancy. All these inescapable uncertainties lead the parents to live during the pregnancy with another imaginary child, for whom they can invent a less fatal future than that predicted by medicine.

At the birth, the parents hope and long to be able to bond as a matter of urgency with the newborn child (‘emergency bonding’, Wool). To meet the baby alive, to hold the living child in their arms, to name him, to speak to him, to present him alive to close friends and family (brothers and sisters, grandparents) is a genuine desire. However, this can sometimes be a real challenge given the conditions of modern obstetrics and the obstetric theatre being closed to the outside, while the life expectancy of most of these children is very short with half of them dying within two hours. The care of the newborn child consists of developmental care based on NIDCAP (Newborn Individualized Developmental Care and Assessment Program) principles.

Priority is given to the meeting of the child with the mother or parents, respecting the absolute principle of no separation between child and mother. Based on these principles, new requirements are being implemented for the organisation of the birth room and the perinatal care unit. Following that comes the collection of memories. All these measures will then allow the family to remember the child whilst he/she was alive and the precious moments spent with him/her, which will allow them to go through the grieving process with elements that are anchored in reality.

Here are the words of a 24-year-old mother-to-be whose baby, at 22 weeks’ gestation, was found to have a severe and inoperable heart disorder.

The doctors suggested palliative care; we wanted to take no responsibility, we decided to follow their opinion because it was too difficult to understand. We had no notion of time, we thought in weeks without trying to look beyond that. We were able to live day by day without asking ourselves endless questions. We are proud of her, we are proud of us. We have no regrets. 

To find out more . . .

Wool C. Systematic review of the literature: Parental outcomes after diagnosis of a fetal anomaly. Advances in Neonatal Care 2011; 11: 182–192.

Wool C. Clinician confidence and comfort in providing perinatal palliative care. JOGNN 2012; 42:48-58.

Wool C. State of the science on perinatal palliative care. JOGNN 2013; 42:372-382.

You can read more posts in this series on the EAPC Blog, with contributions from practitioners in Ireland: Tyrone Horne, Brid Shine, Grace O’Sullivan and Dr Lucia Hartigan and Dr Keelin O’Donoghue.

Look out next week for another contribution from France by Nicole Monteville Culas of L’Enfant Sans Nom – Parents Endeuillés.

 

Soins palliatifs en médecine périnatale: rencontrer le nouveau-né, valoriser le temps de vie, tisser des liens en urgence

 Aujourd’hui, nous reprenons notre série spéciale sur le deuil périnatal et les soins palliatifs avec des exemples d’initiatives qui visent à améliorer les soins pour les bébés et les familles. Le Dr Pierre Bétrémieux, praticien hospitalier honoraire au Centre hospitalier universitaire de Rennes, explique certains des enjeux et des défis concernant la démarche palliative périnatale. 

Pierre Bétrémieux, praticien hospitalier honoraire au Centre hospitalier universitaire de Rennes

Pierre Bétrémieux, praticien hospitalier honoraire au Centre hospitalier universitaire de Rennes

Les soins palliatifs s’adressent aux nouveau-nés atteints d’une malformation à fort potentiel létal, aux nouveau-nés extrêmement prématurés pour lesquels une prise en charge technique est impossible ou non souhaitée avant 24 ou 25 semaines de gestation et aux nouveau-nés pris en soins intensifs qui présentent des lésions graves incompatibles avec une vie relationnelle de qualité. Cette définition inclut donc à la fois des enfants qui vont mourir d’une affection incurable mais aussi des enfants qui vont mourir parce qu’on décide d’interrompre ou de ne pas entreprendre certaines thérapeutiques.

Les soins palliatifs ont pour but de respecter le nouveau-né en valorisant son temps de vie quels que soient son poids, son terme, son aspect, sa pathologie. La démarche palliative a également pour but de contribuer à la naissance sociale de l’enfant en valorisant sa rencontre avec ses parents et sa famille afin de favoriser l’attachement, la mémoire et plus tard le deuil des parents, de la fratrie et éventuellement de la famille plus éloignée.

Dans les situations de malformation à fort potentiel létal les couples qui ne choisissent pas l’interruption médicale de grossesse vont élaborer peu à peu avec les professionnels de la naissance un projet de naissance en soins palliatifs. Quel que soit le type de la malformation diagnostiquée, l’incertitude porte sur plusieurs points : le risque de mort in utero qui viendrait empêcher la rencontre avec l’enfant vivant, la tolérance du fœtus au travail qui pose la question de la surveillance fœtale pendant le travail, voire de la césarienne, et l’état de l’enfant à la naissance qui pose la question du niveau de soins éventuels à délivrer à l’enfant. L’incertitude porte aussi sur l’étendue, la gravité et le retentissement de la malformation sur l’enfant vivant avec comme conséquences l’incertitude sur son confort et sa durée de vie. L’ensemble de ces incertitudes incontournables conduit les parents à vivre pendant la grossesse avec un autre enfant imaginaire, pour lequel ils peuvent inventer un avenir moins néfaste que celui prédit par la médecine.

A la naissance les parents sont dans l’espoir et la demande de pouvoir tisser un lien en urgence avec le nouveau-né (WOOL). Le rencontrer vivant, le tenir vivant dans les bras, le nommer, lui parler, le présenter vivant aux proches (frères et sœurs, grands-parents le plus souvent) constitue une réelle motivation mais parfois un vrai challenge dans les conditions de l’obstétrique moderne et du bloc obstétrical peu ouvert sur l’extérieur, alors même que la durée de vie de la plupart de ces enfants est très courte, la moitié mourant avant la deuxième heure de vie. La prise en charge du nouveau-né s’appuie sur les données des soins de développement issus du NIDCAP et la priorité est donné à la rencontre mère ou parents – enfant, en s’appuyant sur le principe absolu de la non séparation mère enfant. De ces principes découlent de nouvelles contraintes pour l’organisation de la salle d’accouchement et des soins périnatals. Viendra ensuite le recueil des traces mémorielles. L’ensemble de ces dispositions permettra ensuite à la famille de se remémorer l’enfant vivant et les moments précieux passés avec lui, ce qui leur permettra de traverser le deuil avec des éléments ancrés dans la réalité.

Témoignage d’une future maman de 24 ans chez laquelle on découvre à 22 SA une cardiopathie grave et inopérable chez le bébé.

Les médecins nous ont proposé les soins palliatifs; on ne voulait prendre aucune responsabilité, on a décidé de suivre leur avis car c’était trop difficile à comprendre. On n’avait pas de notion de temps, on pensait en semaines sans chercher à regarder plus loin On a pu vivre au jour le jour sans se poser 36 000 questions. On est fiers d’elle, on est fiers de nous. On n’a aucun regret.

Bibliographie 

Wool C. Systematic review of the literature: Parental outcomes after diagnosis of a fetal anomaly. Advances in Neonatal Care 2011; 11: 182–192.

Wool C. Clinician confidence and comfort in providing perinatal palliative care. JOGNN 2012; 42:48-58.

Wool C. State of the science on perinatal palliative care. JOGNN 2013; 42:372-382

Pour en savoir plus sur le Blog EAPC . . .
Vous pouvez lire d’autres articles dans cette série offerte par des professionnels de la santé d’Irlande: Tyrone Horne, Brid Shine, Grace O’Sullivan et Dr Lucia Hartigan et Dr Keelin O’Donoghue.

La semaine prochaine nous vous apporterons un article de France écrit par Nicole Monteville Culas de l’association, L’Enfant Sans Nom – Parents Endeuillés.

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