Volunteering in palliative care: Can you trust a volunteer with confidential patient information?


Today, Steven Vanderstichelen, Ros Scott and Leena Pelttari, EAPC Task Force on Volunteering in Hospice and Palliative Care, raise an important question that will be discussed further in a plenary session in Berlin.

Clockwise: Leena Pelttari, Ros Scott and Steven Vanderstichelen.

Volunteers play a very important role in palliative care worldwide. While we know much about what tasks they perform, what training they have, what support they need, who they work with, and why they do it, there is still a lot that we don’t understand about volunteers.

A remarkable example of this is that paid staff still don’t know whether they can trust volunteers. It seems that health services and coordinators find themselves in an ongoing struggle regarding how much information about patients they should let slip from their lips. The introduction of GDPR (General Data Protection Regulation) has further pushed health services to err on the side of caution. While these regulations apply no differently to volunteers than they do to paid staff, health services may, due to their uncertainty, tend to restrict volunteers further in their access to patient information. Even in health services that require their volunteers to sign a confidentiality agreement, as is the case in Belgium, practices of information sharing with volunteers vary greatly across health services. Many physicians and nurses seem unsure as to how much patient information a volunteer can be trusted with.

Why the hesitation?

As we see it, there are two, not entirely unreasonable but misguided reasons for this. First, we don’t trust volunteers because we don’t know how to regard them. It’s a mental shortcut we all too often take. Those who are qualified to do something, so our instincts tell us, are paid well to do it. As a society, we find it hard to believe someone will do anything for free, let alone do it well – and volunteers are often highly qualified for the work they do. Secondly, we care about our patients and our responsibility to them. There’s merit to being cautious when it comes to protecting our patients and loved ones at their most fragile time, near the end of life. However, these patients are the volunteers’ patients too! Being overly cautious can impede volunteers’ work and – inadvertently – the care for patients. The volunteer role of ‘being there’ and being an intermediate between patients and paid staff is reliant on trust and patients feeling comfortable in their presence. Good volunteer care hinges on knowing the patient, including their care needs and wishes. When volunteers are sufficiently informed, they are able to adjust their approach to the patient as an individual. This requires trust from patients and from paid staff to inform them of these care needs. When this trust exists, volunteers are able to work very closely with healthcare staff in coordinating care and ensuring both parties remain informed. In Flemish palliative home-care services, for example, nurses also depend on volunteers to keep them in the loop.  

How can we reconcile trust with caution?

When does caution become a barrier to good patient care and how can healthcare paid staff and volunteers find a middle way? Perhaps lessons can be learned from models in which health services don’t ‘own’ the volunteers, but rather work together with them as partners. If both parties have a voice in collaboration, only then can trust be established and an understanding be reached. Similarly, health services should ensure that volunteers have a visible place in their approach to compliance with GPDR.

So, can volunteers be trusted with confidential patient information? Yes, but only if paid staff and health services are willing to recognise and trust their unique role and treat them as partners.

If you’re coming to #EAPC2019 in Berlin and would to like to hear more about this, please join us in the plenary presentation, ‘The Liminal Space Palliative Care Volunteers Occupy and the Roles they Perform within it: A Qualitative Study’ on Friday 24 May. We’re also delighted to be part of the International Symposium: Volunteers at the Heart of Hospice and Palliative Care on 25 May. (See links below).

About the authors …

Steven Vanderstichelen is a doctoral researcher at the End-of-Life Care Research Group (Vrije Universiteit Brussel – Ghent University) and a steering group member of the EAPC Task Force on Volunteering in Hospice and Palliative Care.

Ros Scott and Leena Pelttari are the Co-chairs of the EAPC Task Force on Volunteering in Hospice and Palliative Care. Click on the link to find out more about the task force or join us at the Open Meeting on Friday 24 May at 12:55-14:15 (Room 5) at the 16th EAPC World Congress in Berlin.

Click here to sign the Voice of Volunteering Charter.




Join us in Berlin at #EAPC2019
If you are coming to the 16th  EAPC World Congress in Berlin please join us on Friday 24 May when Steven Vanderstichelen will be giving a plenary presentation on ‘The Liminal Space Palliative Care Volunteers Occupy and the Roles they Perform within it: A Qualitative Study’ (Convention Hall II, 15:30-15:50). (Steven also has a poster: ‘The Perspectives on Volunteer-professional Collaboration in Palliative Care: A Qualitative Study’).

And look out for the International Symposium: Volunteers at the Heart of Hospice and Palliative CareSaturday 25 May 2019 at 10:00 to 17:00See more here. View the full EAPC World Congress programme here.

Read more posts about Volunteering in palliative care.
Read more posts about the 16th EAPC World Congress.

Posted in 16th EAPC World Congress Berlin, VOLUNTEERING IN PALLIATIVE CARE | Tagged , | 1 Comment

Palliative care clinicians in London use sedative medication at the end of life cautiously and proportionately

Dr Bella Vivat is Principal Research Fellow in the Marie Curie Palliative Care Research Department (MCPCRD) at University College London (UCL), UK. Here she explains the background to a longer paper just published in ‘Palliative Medicine’ and available online.

Left to right: Professor Paddy Stone (Head of MCPCRD); Anna-Maria Krooupa, PhD student; Bella Vivat (Principal Research Fellow, MCPCRD); and Stephen McKeever (Senior Lecturer, London South Bank University).

Marie Curie is our Department’s core funder and also, in 2015, awarded us a separate, specific programme grant for our I-CAN-CARE research project. The project has two strands: one exploring the use of sedatives at the end of life, the other investigating prognostication.

I’ve been running the sedation strand since it began. A paper reporting on findings from two concurrent explorations of clinicians’ usual practice when using sedative medications at the end of life, conducted at the outset of the research project, has just been published online in Palliative Medicine. [1]

In 2009, the EAPC published a framework for using sedative medication at the end of life, [2] recommending that sedatives should be used carefully and proportionately, and that the effects of such medications on people receiving them should be monitored objectively.

Our initial exploratory research involved focus groups, led by me, with experienced palliative care clinicians working in London, in either a hospice or a hospital/community palliative care service. We asked group participants for their views and comments on current practice when using sedative medications at the end of life. At the same time, another researcher collected relevant data from patient records in both the hospital and the hospice.

We compared what our focus group participants told us with data from the patient records, and found that usual practice in both the hospice and the hospital was to use the lowest possible doses of appropriate sedatives to help patients to be comfortable at the ends of their lives, if clinicians considered that sedative medication would achieve that aim. Patient records confirmed clinicians’ self-reported practices, showing that only around 50 per cent of patients in either location received any sedative medication at all, and most of those received very low doses. A very small number of people with severe symptoms received higher doses to help them with those symptoms.

This practice is in line with EAPC recommendations for careful, proportionate use of sedatives at the end of life. However, the EAPC also recommends systematic objective monitoring of the effects of sedatives, particularly when using high doses of sedatives, and we found that objective tools were not ever used, even in the rare cases when patients received high doses of sedatives. Anna-Maria Krooupa, our PhD student working on this project, has just completed data collection for the next stage in the overall project: her own research on using Bispectral Index (BIS) monitoring technology. Her study involved exploring whether patients found it acceptable to be monitored using BIS technology, under the supervision of myself, Professor Paddy Stone (Head of MCPCRD), and Stephen McKeever, Senior Lecturer at London South Bank University. Anna-Maria found that most patients were happy to participate in the research, and will be presenting her recruitment findings at the EAPC World Congress in Berlin in May 2019.

If you’d like to know more, please come along to Anna-Maria’s oral presentation at the EAPC World Congress in Berlin in the late afternoon session on Friday 24 May, when she will be discussing her recruitment findings (Room ‘Estrel B’; 17:15 to 17:30). [3]


1.Vivat, B., Bemand-Qureshi, L., Harrington, J., Davis, S., & Stone, P. (2019). Palliative care specialists in hospice and hospital/community teams predominantly use low doses of sedative medication at the end of life for patient comfort rather than sedation: Findings from focus groups and patient records for I-CAN-CARE. Palliative Medicinehttps://doi.org/10.1177/0269216319826007

2. Cherny, NI, Radbruch, L. (2009). European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliative Medicine; 23: 581–593.

3. Krooupa A-M, Stone P, McKeever S, Vivat B. Are palliative care inpatients willing to be recruited to a study exploring the use of a technical device to assess level of consciousness? An observational study for I-CAN-CARE.


Coming soon … look out on the EAPC blog for a post from Dr Jeroen Hasselaar about a new European Union project on palliative sedation.

Join us in Berlin for the 16th EAPC World Congress…

If  you are attending the 16th EAPC World Congress: Global palliative care – shaping the future in Berlin, Germany, 23 to 25 May 2019, please come along to Anna-Maria Krooupa’s oral presentation, ‘Are palliative care inpatients willing to be recruited to a study exploring the use of a technical device to assess level of consciousness? An observational study for I-CAN-CARE’. The presentation is in the ‘Research Methodology and Basic Translational Research’ session on Friday 24 May, Room ‘Estrel B’ at 17:15 to 17:30.

Browse the full scientific programme here – now available with interactive programme tool. Start perusing and planning now! Register for the congress here.



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

The Digital Legacy Conference to take place at #EAPC 2019


Today, James Norris, Founder of  The Digital Legacy Association, welcomes you to the Digital Legacy Conference, which will address death, dying and bereavement in a digital world during the EAPC World Congress.

James Norris

The Internet has changed many aspects of our lives. It has also changed the ways in which we view death, dying and bereavement and how we remember those close to us. This year, the 16th World Congress of the European Association of Palliative Care will welcome the Digital Legacy Conference. This annual conference addresses death and dying in today’s digital world. The conference will be free to all congress delegates and will take place on Friday 24 May in Estrel B with the reception starting from 18:15 ahead of a prompt 18:30 start.

We are currently living in a time of flux when many aspects of our lives are becoming digitised. Changes from the physical to the digital form include ways in which we communicate to ways in which we upload, store and save photos and videos (on platforms such as Facebook, Instagram, Youtube, Dropbox).

The sentimental and monetary importance and the value that society places on their online lives also appears to be increasing year on year according to various studies (Digital Death Survey).

The image above is an animated GIF.

The Digital Legacy Conference 2019 will aim to define the role of the palliative care professional in relation to digital asset planning, online support and digital legacy. Stories from hospital and palliative care wards and from patients will be shared. Speakers will examine the media’s gaze (how the media view society and represent their view in magazines, films etc),as well as attitudes towards death.The conference will also showcase how professionals are currently supporting patients within this area, concluding with a panel discussion on ‘How to better support patients and families with digital assets and digital legacy’.

After attending the 9th EAPC World Research Congress in 2016, I was inspired by the different forms of innovation and care provided by professionals globally. At the next EAPC World Congress in Madrid we presented two posters addressing death, digital assets and digital legacy and the response from attendees helped validate the need to explore these areas further and provide support globally. Soon after EAPC 2017, we assigned professional leads within different fields and regions.We are delighted that the new Americas lead and the clinical lead will be sharing their and their patients’ experiences at EAPC during this year’s Digital Legacy Conference.

Dr Mark Taubert, one of the speakers at this year’s Digital Legacy Conference.

Join us at this year’s Digital Legacy Conference in Berlin. The conference is free to attend for all those who have registered for the congress. A limited amount of tickets for those unable to attend EAPC 2019 will also be made available.





View the programme for this year’s Digital Legacy Conference here.

Join us at The Digital Legacy Conference at #EAPC2019
The 16th World Congress of the European Association for Palliative Care: ‘Global palliative care – shaping the future’ takes places in Berlin, Germany, on 23 – 25 May 2019. The Digital Legacy Conference takes place in room Estrel B on Friday 24 May at 18:30-21:00. Visit the congress website. Register here. View the full congress programme here.

EAPC 2019 – PHOTOGRAPHY COMPETITION – ‘NEW IMAGES OF PALLIATIVE CARE’ What image says palliative care to you? In the run up to the EAPC World Congress in Berlin, the EAPC is seeking ‘New images of palliative care’. The photography competition is open to all.  Visit the congress website for more information.

Posted in 16th EAPC World Congress Berlin, SOCIAL MEDIA | Leave a comment

Mind the language gap! A barrier in paediatric palliative care?


Today, Professor Dr B Zernikow and Larissa Dreier Paediatric Palliative Care Centre, Children’s and Adolescents’ Hospital, Datteln (Witten/Herdecke University), Germany, describe an important project to assess the language skills of children’s parents in order to better plan for treatment and further studies.

Professor Dr Boris Zernikow and Larissa Dreier.

Since our Paediatric Palliative Care Centre (PPC) in Datteln, Germany, was established in 2010, we have treated patients with various illnesses, family histories and cultural backgrounds. Although cultural diversity brings with it the potential of expanding personal horizons and gaining new experiences, it can also present obstacles for the team and the families involved. The communication with families who do not, or only poorly, speak German can be difficult for both sides, resulting in misunderstandings, dissatisfaction and mistrust. To close the language gap, care facilities, such as our PPC centre, must first be aware of the languages spoken by the families with whom they regularly deal.

This year, in order to obtain precise numbers for our centre, we have started an initial project on the languages spoken by parents admitted to our care unit and their respective German language skills. Questions we would like to answer are: What languages do the parents admitted to our care unit during this one-year period speak? In case German is not the parents’ first language – how are their German language skills? In order to obtain an assessment that is as representative as possible for our institution, we ask employees from various professional fields to rate the parents’ language proficiency.

We expect the results, which have been available since the end of December 2018, to provide us with an initial point of reference on which we can base, for example, treatment and study planning. In the context of treatment planning this could, for instance, lead to interpreter assignments being requested and planned more foresightedly and thus more efficiently.

Regarding study planning, language data help to anticipate possible dropouts in sample size planning. The 16th World Congress of the European Association for Palliative Care (23 to 25 May 2019 in Berlin, Germany) #EAPC 2019 – with a special Children’s Palliative Care Seminar – seems to be the best place to discuss these first results.

We are aware that language data alone cannot be used to make comprehensive statements about cultural aspects in PPC. Nevertheless, we see our project as an entry into an exciting and important field of research that, in the long term, should aim to create solutions to barriers due to cultural differences and thus improve PPC in this context.

We hope to welcome you to Berlin in May and particularly to the Children’s Palliative Care Seminar on Thursday 23 May.

Join us at the Global challenges in Paediatric Palliative Care: An EAPC Seminar – Thursday May 23, 2019 at 08:00 to 18:15, at the 16th EAPC World Congress. Download the programme here. Delegates who wish to attend only the Paediatric Palliative Care Seminar pay a day rate. Register here.


Posted in 16th EAPC World Congress Berlin, CHILDREN'S PALLIATIVE CARE | Tagged , , | Leave a comment

Pet therapy in palliative care at Calvary Health Care Sydney

Another post in our series on ‘Palliative Care and Animals’ …

Calvary Health Care Kogarah is a public hospital in Sydney, New South Wales, Australia, providing specialist palliative care and rehabilitation services. Pet therapy has been part of the hospital’s landscape for the past 25 years or so and provides comfort, enjoyment, distraction and a unique form of interaction with our patients, their visitors and our staff. Sharon Towe, one of four volunteers working in the programme, and Anne-Marie Traynor, Manager Volunteer Services, tell us more.

Pet therapy programme volunteer, Sharon, with her dogs and some of the staff. (With kind permission of Calvary Health Care Sydney).

Sharon: I joined the pet therapy programme as a volunteer in 2017 with my dog Kane, who graduated as a guide dog last year, and now therapy dogs, Sass and Tilly, have joined the programme too.

I love being part of the pet therapy programme. Whether it be patients young and old, doctors, nurses, physiotherapists, family, friends and staff, it is so apparent how much all enjoy seeing our four-legged friends.

Two patients that remain in my memory

One was a very elderly gentleman in a single room whose family had gathered and were keeping vigil. When one of the family saw me with Tilly, a Border cross collie, she exclaimed with great delight that her dad would love to see Tilly.

I entered the room with Tilly and although their dad was not conscious, the family beckoned me to come closer as they bent over telling their dad about Tilly and including him in the conversation. They lovingly recounted stories about the beloved pets that had been part of their family over the years. As I left the room, it was amazing to witness how the mood in the room had changed from sombre to smiles and laughter, amidst a few happy tears, and I am sure this encounter will remain a special memory for them in the years to come.

Another day I was visiting with Sass, a Labrador. One of our young cancer patients, who had been waiting for days for the dogs to come in, said she had been sleeping with one ear open waiting for the sound of dog paws on the floor.

Pet therapy programme volunteer, Sass. (With kind permission of Calvary Health Care Sydney).

Sass was met with open eyes and a huge smile as she entered the room. Invited to come closer, Sass put her front paws up onto the bed. Many cuddles, pats, licks and a beaming smile followed. The joy, also shared by the staff that were watching as the patient interacted with Sass, was wonderful. They knew how much this patient had been looking forward to this special visitor.

What do staff think of the pet therapy programme?

Working on the days the dogs come in is the best day of the week,” is a frequent comment from staff. It not only brings so much enjoyment to patients and visitors but also provides a moment’s respite for staff members. It’s a lovely sight to see and, of course, Sass and Tilly enjoy all the extra love and attention, so it is smiles all round.

Pet therapy is so special. There is no judgement, just unconditional acceptance – whether it’s just sitting by the bedside as I listen to people’s stories, or patients wanting the dogs to be closer so they can pat them – the dogs are happy to respond accordingly.

What we look for when we recruit volunteers to the pet therapy programme

Anne-Marie: As Manager of Volunteer Services, I have to be sure that people wishing to be part of this programme have good communication skills, sensitivity and a willingness to be present in an environment where people may be experiencing grief and loss. We provide all our volunteers with mandatory training and orientation to ensure they are adequately prepared to work safely in a healthcare environment.

For our four-legged volunteers, animal evaluation is a specialised skill, and evaluators are trained to identify stress responses in the animal’s temperament and aptitude. Displays of aggression, distractedness and nervousness will disqualify an animal for therapy or visiting purposes.

Evidence of dog training includes:

  • An evaluation of the animal’s ability to obey basic commands;
  • Demonstration of a confident and gentle relationship;
  • The ability of an animal to cope with unexpected or stressful situations, being in the presence of many strangers and dealing with the many distractions (e.g. noises and smells) of a health facility;
  • Certification of the animal’s vaccination status, and veterinary screening.

We couldn’t count the amount of positive comments we get from patients, families and staff, such as, “What a great service this is,” and one that Sharon and other volunteers often hear: “You must have the best job”.


Read more posts on the EAPC blog about Palliative Care and Animals.

Have you signed the Voice of Volunteering Charter?

Let’s advocate for the support, recognition, promotion and development of volunteering in hospice and palliative care. Please sign the Voice of Volunteering – The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care.


Are you coming to #EAPC2019 in Berlin?

Then look out look for the International Symposium: Volunteers at the Heart of Hospice and Palliative Care – Saturday 25 May 2019 at 10h00 to 17h00, Estrel Congress Centre, Berlin

This special symposium, taking place at the 16th EAPC World Congress in Berlin, is for volunteers in the field of hospice and palliative care, coordinators/leaders of volunteer hospice teams, managers of hospice organisations and associations, trainers and supervisors of hospice volunteers. See more here. View the full EAPC World Congress programme here.

Posted in Palliative Care & Animals, VOLUNTEERING IN PALLIATIVE CARE | Tagged , , | Leave a comment

Relatives’ experiences with Advance Care Planning

Anouk Overbeek is a postdoctoral researcher at the Erasmus University Rotterdam, The Netherlands. With, among others, Agnes van der Heide, Judith Rietjens and Ida Korfage, she conducted a randomised controlled trial on the effects of Advance Care Planning in frail older people and their relatives.

Anouk Overbeek

A month ago, my lovely grandmother died at the age of 88. Due to several conversations about her preferences concerning medical treatment and care, we knew that she would prefer comfort care to life-extending treatments in case of serious illness. When she was suffering from bladder cancer and no longer able to make medical decisions on her own, we decided to focus the goals of her medical treatment and care on providing relief from her symptoms as much as possible and improving her quality of life. In this way, we were able to honour and follow her preferences. We experienced her dying process as calm and peaceful.

Because of dementia or loss of consciousness, people can become unable to decide for themselves and increasingly relatives may end up having to make medical decisions on behalf of their loved one. Therefore, it is useful for relatives to know their goals and preferences concerning medical treatment and care.

Advance Care Planning (ACP) is a formalized communication process that

enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate.”

When relatives engage in ACP conversations, they can become familiar with individuals’ goals and preferences and their own potential role in the decision-making process.

In our randomised controlled trial in The Netherlands among 200 frail older people, we studied experiences with, and outcomes of, ACP in bereaved relatives. Our study findings have recently been published in Age and Ageing.

We found no significant effect of ACP on relatives’ levels of satisfaction, anxiety and depression. However, bereaved relatives felt they had been adequately prepared for decision-making following facilitated ACP conversations. According to relatives, ACP provided clarity concerning the individuals’ preferences for medical treatment and care, and the decision that had to be made on behalf of their loved one:

Yes, a lot of topics emerged during that conversation. My mother indicated clearly what she wanted to happen and what she did not want to happen. Especially what she did not want to happen. That was also documented in that advance directive, so it was really clear to me.

Find out more at the 7thACP-I Conference

These, as well as other research results about the perspectives of relatives towards ACP, will be presented during the 7th ACP-I Conference in Rotterdam, The Netherlands, in the parallel session ‘ACP in Family Caregivers’ on March 15, 2019. The ACP-I Conference is aimed at sharing and discussing new research findings and innovative approaches in the area of ACP. The event is targeted towards researchers, clinicians, policy makers and ethicists.

Links and resources

If you’re coming to Berlin for the 16th EAPC World Congress, please join us at the Advance Care Planning presentations…

Friday 24 May 2019. Parallel Session at 11:15-12:45 in room ‘Paris’. Implementing ACP across the Healthcare System in Europe and the US: the Results of Three ACP Trials chaired by Sheila Payne and Luc Deliens.

11:15-11:45. Improving the Initiation of ACP in General Practice: the Results of a Phase II Pilot Trial, Aline DeVleminck (Belgium)
11:45-12:15. Improving Advance Care Planning with Easy-to-Use, Patient-Facing, Evidence-Based Tools: The PREPARE Program, Rebecca Sudore (United States).
12:15-12:45. Advance Care Planning in Patients with Advanced Cancer, Ida Korfage (Netherlands).

Friday 24 May 2019. Free communications session on Advance Care Planning at 16:45-18:15 in room ‘Estrel A’ chaired by Dr Daniela Mosoiu and Malgorzata Krajnik. With presenters from Austria, Germany, Ireland, Singapore and the US.

View the full congress programme here.
Enter the EAPC Photography Competition: New Images of Palliative Care. Find out more here.


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Continuous deep sedation until death: French recommendations

Cliquez ici pour la version en français.

Frédéric Guirimand, MD, PhD, is a physician and Head of Research and Education at La Maison Médicale Jeanne Garnier, an 81-bed palliative care unit in Paris.

Here, Dr Guirimand, who has played a key role in recent developments in France around continuous deep sedation, explains the background to recent changes in French law and unveils theFrench National Authority for Health’s (Haute Authorité de Santé, HAS) new guide, ‘How to implement continuous deep sedation until death?’ Now available to download in English!

Dr Frédéric Guirimand

According to the French Law of 2 February 2016, Creating new rights for patients and the terminally ill, every person has the right to the best possible relief of his/her suffering and healthcare professionals are obliged to do their utmost so that this right is respected. Faced with refractory suffering that has been extensively and widely assessed, physicians, in consultation with healthcare team members and patient/family, implement the analgesic and/or sedative treatments necessary to reduce symptom burden, even if they may have an effect on patient’s life expectancy.

Current palliative sedation practice is used according to the guidelines of academic societies (French Palliative Care Association [Société Française d’Accompagnement et de Soins Palliatifs SFAP] and the European Association for Palliative Care EAPC) the depth of these sedations is usually variable (light to deep) and the duration is usually limited (intermittent sedation).

In addition to current practice, the French law defines the following three conditions in which continuous deep sedation until death (CDSUD) can be implemented at the patient’s request:

  • serious and incurable;
  • life-threatening in the short term;
  • refractorysuffering to treatment.

Healthcare professionals have to assimilate these new legislative measures, and that is why the French National Authority for Health (HAS) has developed a guide ‘How to implement continuous deep sedation until death?’ After clarification of different palliative sedation practices and how they differ from euthanasia, the guide gives detailed information on the clinical pathway: how to listen to, understand and analyse the patient’s request. A collegial procedure, i.e a collective deliberation process among the team, is required by law before making a decision for CDSUD. The HAS guide describes objectives, the professionals involved in hospital, at home or in a residential care institution for dependent adults, and the course of the meeting, which is carried out according to ethical rules of deliberation. It is collective responsibility to assess the expected short-term prognosis (from a few hours to a few days), and the refractory suffering; the assessment is multidimensional and multidisciplinary: if possible, it is repeated … however, the implementation of CDSUD to provide relief to the patient should not be delayed. The requirements for at-home sedation are described: preliminary contact with a skilled palliative care team, a physician who is contactable,and a nurse who can get to the patient’s home 24 hours a day. Hospitalisation isnecessary if these criteria are not met. Pharmacological treatments, with or without a loading dose, are proposed. The guide ends with recommendations on support for friends and family and for professionals.

This HAS guide is the result of a large, collaborative piece of work involving professionals, public agencies, academic societies and patients’ representatives. It provides a light on complex situations based on clinical, ethical and legislative points of reference. An English translation of the guide is already available for the international community. 

More about the author

Frédéric Guirimand, MD, PhD is a physician and Head of Research and Education at La Maison Médicale Jeanne Garnier, Paris’s largest palliative care unit.

He chaired the French National Authority for Health’s (HAS) task force to draft the new guide, ‘How to implement continuous deep sedation until death?’ He also leads the Société Française d’Accompagnement et de Soins Palliatifs (SFAP) work group on sedative treatments.


Sédation profonde et continue maintenue jusqu’au décès : Les recommandations françaises

Frédéric Guirimand, MD, PhD, est médecin chef de service du Pôle Recherche et Enseignement à la Maison Médicale Jeanne Garnier, Paris, unité de soins palliatifs de 81 lits.

Le Docteur Guirimand a joué un rôle clé en France dans les derniers développements autour de la sédation profonde et continue ; il explique le contexte dans lequel s’inscrivent les modifications récentes de la loi française et dévoile le nouveau guide de la Haute Autorité de Santé (HAS) intitulé : « Comment mettre en œuvre une sédation profonde et continue maintenue jusqu’au décès ? ». Ce guide est disponible en ligne.

Dr Frédéric Guirimand

La loi française du 2 février 2016 créant de nouveaux droits pour les patients et les personnes en fin de vie affirme que toute personne a droit au meilleur apaisement possible de sa souffrance et que les professionnels de santé ont l’obligation de tout mettre en œuvre pour que ce droit soit respecté. Face à une souffrance réfractaire ayant fait l’objet d’une évaluation globale et approfondie, le médecin, après avoir consulté les membres de l’équipe soignante et le patient / la famille, met en place des traitements analgésiques et/ou sédatifs nécessaires pour réduire la pénibilité du symptôme, même s’ils peuvent avoir comme effet d’abréger la vie du patient.

Ces pratiques sédatives sont celles couramment utilisées, selon les recommandations définies par les sociétés savantes (SFAP, Société Française d’Accompagnement et de Soins Palliatifs et EAPC, European Association for Palliative Care): le plus souvent, ces sédations sont de profondeur variable (légère ou profonde) et durée limitée (sédation intermittente).

En complément de ces pratiques courantes, la loi définit les trois conditions suivantes pour qu’un patient puisse bénéficier à sa demande d’une sédation profonde et continue maintenue jusqu’au décès (SPCMD) :

  • affection grave et incurable,
  • pronostic vital engagé à court terme,
  • souffrance réfractaire au traitement.

Les professionnels de santé doivent s’approprier ces nouvelles dispositions législatives et, pour cela, la Haute Autorité de Santé (HAS) a élaboré un guide intitulé : “Comment mettre en œuvre une sédation profonde et continue maintenue jusqu’au décès?” Après avoir clarifié les différentes pratiques sédatives et en quoi elles se différencient d’une euthanasie, ce guide consacre une large part à la clinique : comment écouter, comprendre et analyser la demande d’un patient. La loi dit que la décision de SCPMD doit être prise à l’issue d’une procédure collégiale, c’est-à-dire d’un processus de délibération collective réunissant l’équipe soignante. Le guide HAS décrit les objectifs de cette délibération, les professionnels y participant à l’hôpital, à domicile ou en EHPAD, le déroulement de la réunion dans le respect des règles éthiques de délibération. C’est à la collégialité d’apprécier le court terme du pronostic vital (quelques heures à quelques jours) et le caractère réfractaire de la souffrance ; l’évaluation est multidimensionnelle et pluri-professionnelle : elle est si possible répétée… sans pour autant retarder la mise en œuvre de la SPCMD nécessaire au soulagement du patient. Les conditions pour une mise en œuvre à domicile sont précisées : contact préalable avec une équipe compétente en soins palliatifs, médecin joignable et IDE pouvant se déplacer 24h/24. Si ces conditions ne sont pas remplies, une hospitalisation sera nécessaire. Des traitements pharmacologiques, avec ou sans dose de charge, sont proposés. Le guide s’achève sur des recommandations pour le soutien des proches et des professionnels.

Ce guide HAS est le fruit d’un important travail collaboratif impliquant des professionnels, des organismes publics, des sociétés savantes et des associations de patients. Il propose un éclairage sur ces situations complexes à partir de repères cliniques, éthiques et législatifs. Il est désormais disponible en anglais pour en faire bénéficier la communauté internationale.

Pour savoir plus sur l’auteur
Frédéric Guirimand, MD, PhD est médecin chef de service du Pôle Recherche et Enseignement à la Maison Médicale Jeanne Garnier, la plus grande unité de soins palliatifs à Paris. Il a présidé le groupe de travail de la Haute Autorité de Santé (HAS) pour l’écriture du nouveau guide « Comment mettre en œuvre une sédation profonde et continue maintenue jusqu’au décès ». Il est aussi responsable du groupe sur les pratiques sédatives de la Société Française d’Accompagnement et de soins Palliatifs (SFAP).