Will you make it happen, Santa?

The EAPC’s Children and Young People Reference Group have just published the European Charter on Palliative Care. The aim of this very important Charter is to set out standards that can be used as a tool for empowering children, families and healthcare professionals, with regards to what they can expect, what should be available to them, and for advocating for the development of children’s palliative care services within Europe. For today’s blog, EAPC Children and Young People Reference group co-chairs Ana Lacerda and Meggie Schuiling-Otten reflect on a busy year, and hope a very special person might grant some Christmas wishes…


Photo credit: Tim Mossholder.

This year we have made great strides with the EAPC Children & Young People Group. Working with the EAPC Board and our Group members, we are growing up… We are proud to have achieved the status of EAPC Reference Group, which gives us more influence and responsibilities, and we are delighted to present to you the new EAPC European Charter on Paediatric Palliative Care.

We are very happy with the steps we are taking. But there is still much to be done for the equitable development of Children & Young People’s Palliative Care. What wishes do those involved have for Santa Claus?

We hope Santa will make these Christmas wishes come true.  In the meantime, you can help this important work by signing the EAPC European Charter on Palliative Care now!  Click here to sign.

Links and resources

  • Read the EAPC European Charter on Palliative Care here.
  • Find out more by watching the EAPC webinar ‘Moving Children’s Palliative Care forward in Europe: Launching the EAPC European Charter on Paediatric Palliative Care’ here.
  • Find out about the EAPC Childrens and Young People’s Task Force here.
  • Read more EAPC blogs about Children’s Palliative Care here.

About the authors

Ana Lacerda is a paediatric oncologist with an MSc in Palliative Care from the Cicely Saunders Institute, where she honed her leadership skills to share her passion about pediatric palliative care. She works in Lisbon, Portugal, where she has been leading the development of education and services.

Meggi Schuiling-Otten is the Chief Executive Officer of the Dutch Center of Expertise in Children’s Palliative Care, the central point of contact for all questions and developments in the field of paediatric palliative care in the Netherlands. She has been involved for years in national and international research projects, guideline development and the embedding of expertise in vocational training. Her special expertise lies in the field of policy development, political lobbying, funding issues and developing network organisations.


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Posted in CHILDREN'S PALLIATIVE CARE, EAPC Task Forces/Reference Groups, PATIENT & FAMILY CARE | Leave a comment

Do relatives think there should be research trials with dying patients?

Although all research requires ethical approval, some people may feel that those who are dying should not be asked if they want to participate in research.  But what do relatives of those dying think about this? For December’s Palliative Medicine’s Editor’s Choice, Harriëtte van Esch and colleagues share with us their important research asking relatives their experiences and feelings about patients being asked to participate in research at this difficult time.


Photo credit: ‘Pieta’ by Karmen Loncarek.

From April 2017 till December 2020, we undertook a randomised placebo-controlled trial (RCT) to investigate the effect of medication given to prevent noisy breathing at the end of life. This is a common symptom and can be called the ‘death rattle’. Although it has been suggested that patients are not affected by the death rattle, the actual effect on the patient experience is unknown. Literature does show that relatives can find the sound stressful.

Our study was conducted in six inpatient hospice facilities in the Netherlands. We found that the occurrence of the death rattle was significantly lower in patients who were given scopolaminebutyl bromide compared to the placebo group, with no substantial difference in adverse events .1 We asked the nurses to rate the quality of life of the last three days of all participating patients and they perceived a significantly better quality of life for those who were given scopolaminebutyl bromide.2

Little is known of the perceptions of patients and relatives about participating in such an end-of-life studies. We wanted to understand the experiences of relatives, and the patient’s decision-making process about participating in this research, and so we included a questionnaire for relatives and interviewed some relatives. We asked relatives about the decision making process of the patient as this gave us useful insight as we were not able to ask patients who by then had died.3 One hundred and four relatives completed the questionnaire about burden and/or stress during the study, and sixteen relatives were interviewed.

The majority of relatives did not experience burden or stress related to this research trial. Those who did mention some burden mostly indicated that this was related to the sound of ‘death rattle’ rather than participation in the study. Relatives believed that the quality of dying was unchanged, or even improved, during the study and they valued being involved with this research.

Patients were asked if they would want to take part in this research when they were admitted to the hospice.  We often saw that patients involved their relatives in the decision about whether they should participate. Considerations around participation were discussed and the decision was sometimes truly made together, sometimes by the patient alone, but almost always after consultation with their relatives. It is known that in general the opinions of relatives are valued by patients when decisions have to be made at the end of life.4

We hope that the insights from this study could help to optimise future informed consent procedures, in particular in providing information which would be supportive for relatives to help them understand about the research study. Indeed, our research has shown that it is important to involve relatives from the first moment patients are approached for participation in end-of-life studies. In addition, we found that taking part in this RCT did not put any burden or stress on the majority of the relatives. In fact, relatives expressed that they valued research at this time, and so this study may serve as an example to initiate more RCTs to inform evidence-based care at the end of life.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’!

‘When a dying patient is asked to participate in a double-blind, placebo-controlled clinical trial on symptom control: the decision-making process and experiences of relatives’ Harriëtte J van Esch, Arianne Stoppelenburg, Lia van Zuylen, Carin CD van der Rijt & Agnes van der Heide. First published: Palliative Medicine 2022, Vol. 36(10) 1552–1558.

EAPC members can access a FREE copy from the EAPC website here.

References

1.            van Esch HJ, van Zuylen L, Geijteman ECT, et al. The SILENCE Randomized Clinical Trial. ‘Effect of Prophylactic Subcutaneous Scopolamine Butylbromide on Death Rattle in Patients at the End of Life: The SILENCE Randomized Clinical Trial’. JAMA. Oct 5 2021;326(13):1268-1276.

2.            van Esch HJ, van der Heide A, van Zuylen L, van der Rijt CCD. ‘Quality of Life and Quality of Death Outcomes of the SILENCE Study‘. J Pain Symptom Manage. Sep 2022;64(3):e177-e179.

3.            Higginson I, Priest P, McCarthy M. Are bereaved family members a valid proxy for a patient’s assessment of dying? Soc Sci Med. Feb 1994;38(4):553-7.

4.            Witkamp E, Droger M, Janssens R, van Zuylen L, van der Heide A. How to Deal With Relatives of Patients Dying in the Hospital? Qualitative Content Analysis of Relatives’ Experiences. J Pain Symptom Manage. Aug 2016;52(2):235-42.

Links and resources

  • Read other Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter: @palliativemedj

About the author

Harriette van Esch is an elderly care physician and PhD student based in Rotterdam whose research focuses on multidimensional aspects of death rattle. Facebook: Jet van Esch. Orcid number: 0000-0003-3234-8135.


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  • Register now!  Early Bird rate until 1st March 2023.
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Posted in EAPC-LINKED JOURNALS, Journal of Palliative Medicine, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Leave a comment

Improving patient comfort when withdrawing mechanical ventilation at the end of life.

There were many highlights at the EAPC 12th World Research Congress, including the excellent posters which were on display.  The overall poster winner was Margaret L. Campbell and colleagues from Wayne State University, United States of America.  For the next in our palliative care and intensive care series, Margaret L. Campbell tells us about her research which is the first intervention trial for the common palliative care process of withdrawing mechanical ventilation at the end of life in critical care.


Early in my career, I was a palliative care nurse practitioner in a level one trauma and emergency hospital. More than half of the patients referred for palliative care were from the medical intensive care unit, many of whom were at the end of their life and needed to have mechanical ventilation withdrawn. In those early days of United States (U.S.) palliative care, there were no clinical guidelines for this withdrawal. I saw that some patients came off the ventilator with no apparent distress, while others struggled to breathe, and I saw how upset they and their families were. Many years later, there is still global variability in how and if this decision is made, and how this procedure is undertaken. Yet, withdrawal of mechanical ventilation, if not performed correctly, leads to patient respiratory distress, which causes suffering to patients, and to their relatives who are witnessing it. There is also the concern that when medication regimens are not evidence-based or guided by an objective measure of patient distress, it may lead to a perception of hastening death, which is not an aim of this palliative process.

Withdrawal of invasive mechanical ventilation entails a reduction in mechanical ventilatory support until the patient is breathing spontaneously to help them to have a natural death. The most common approaches to this process are a gradual reduction in the support from the ventilator or a single step of ventilator being turned off and endotracheal tube removed. As there has previously been little rigorous clinical research to guide this process, clinicians rely on intuition, varying levels of experience, or local practice customs.

From 2017 until 2022, my colleagues and I undertook a randomised controlled research trial to test a nurse-led algorithmic approach to this withdrawal.  This approach means that there are various decision trees to guide the steps, for example ‘Can the patient experience distress?’. If the answer is yes, the algorithm suggests a gradual reduction, rather than a complete withdrawal in one step. We felt this was the best approach to take because of the varied patients undergoing ventilator withdrawal in ICU. For example, some people choosing ventilator withdrawal for themselves are awake and aware, and able to report breathlessness. However, most people are cognitively impaired or unconscious and unable to self-report breathlessness. It is possible that some patients who are deeply unconscious may not experience respiratory distress yet may be overtreated in anticipation of distress. Other patients will have the consciousness to experience respiratory distress but may not be able to let their clinical team know and be at risk for under-treatment since clinicians may underestimate the patient experience.

We knew that the ideal best practice process for conducting ventilator withdrawal across such different patients must account for the variance in their experience and so we developed a patient-centered algorithm guided by an objective measure of respiratory distress. The purpose of this study was threefold: i) to determine the effectiveness of a Principal Investigator-developed algorithm compared to usual care, ii) ascertain differences in medications given and iii) investigate the potential impact of select variables on duration of survival. The algorithm is nurse-led and respiratory therapist supported. Critical care nurses in the U.S. have the skills to assess and treat patients according to the algorithm with support from respiratory therapists who make the ventilator changes.

One hundred and forty-eight patients took part in this multi-site study. Our findings were that strong, significant effectiveness was shown when using the algorithm.  We found that the algorithm is scalable with critical care leadership buy-in and with nurse/respiratory therapist training to the algorithm. We successfully implemented the algorithm in all five of our study sites.  When clinicians make this care decision with a patient’s family, we make a promise that breathing will be comfortable to the end of life, and with implementation of this algorithmic approach, we keep that promise.

Links and resources

  • View Margaret’s EAPC award winning poster here.
  • To read more in the EAPC’s Palliative care and Intensive Care blog series, click here.
  • Read more about this research:

Campbell ML, Templin T, Walch J. A Respiratory Distress Observation Scale for patients unable to self-report dyspnea. Journal of Palliative Medicine. 2010;13(3):285-290.

Campbell ML, Yarandi HN. Effectiveness of an algorithmic approach to ventilator withdrawal. Journal of Pain and Symptom Management. 2022;63(6):1059.

About the author

Margaret L. Campbell is a Professor in the College of Nursing at Wayne State University, in the U.S. She studies breathlessness assessment and treatment for patients nearing the end of life. She developed the Respiratory Distress Observation Scale which is in wide use in North America and eleven other countries and has been translated into French, Italian, Dutch, Greek, Spanish, Japanese, and Chinese. Orcid: 0000-0003-4517-690X Twitter: campbell_meg.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

  • Register now!  Early Bird rate until 1st March 2023.
  • Nominate yourself or a colleague for the EAPC World Congress 2023 Researcher Award!  Find out how to apply here
  • FOLLOW @EAPCvzw #EAPC2023.
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Posted in EAPC 12th World Research Congresss, EAPC World Congresses, Palliative Care and Intensive Care, PATIENT & FAMILY CARE, RESEARCH | Leave a comment

Doing things differently, sharing power and holding to account: the evolution of No Barriers Here.

Over recent years, there has been an increased awareness of the inequalities in healthcare provision and palliative care. Individuals and organisations are working to change this, and today we hear from Gemma Allen and Dr Jed Jerwood about an exciting initiative to improve access to advance care planning for people who experience barriers to healthcare.


Participants at a No Barriers Here workshop.

Prior to the COVID-19 pandemic, a small group of six met to discuss the inequity in palliative care for people with learning disabilities. Within the group there were three people with a learning disability, a learning disability service manager, a member of staff from The Mary Stevens Hospice and an art psychotherapist who wanted to develop a project around accessible advance care planning. The hospice had worked with people with learning disabilities to co-produce an easy read advance care plan, but this did not feel enough. ‘What about people who can’t communicate or don’t like hospitals?’ one person asked.

We discussed how we could redesign traditional advance care planning and remove systematic barriers to palliative care. The name of the project was created by a co-production member who said, ‘Well it’s simple. We want to remove barriers, so we’ll call it No Barriers Here!’

Working together we developed a series of workshops that used art-based methods to support advance care planning, with accompanying easy read material and short demonstrative films. The aim was to create a safe space to help individuals talk about their advance care planning wishes, as well as to create materials to support healthcare professionals to have these important conversations. Each workshop was trialled beforehand with the co-production group members, with amendments made to ensure they were accessible and inclusive.

Many projects were paused during COVID-19; however, we knew people who historically experienced inequity would be subjected to further disparities during the pandemic. Originally planned to take place outside of a clinical environment and in a community setting, two cohorts of workshops were facilitated online due to government restrictions and the final cohort in the garden of a supported living home.

The arts-based workshops created space for rich and detailed conversations to help people talk about and participate in advance care planning, care staff gained a deeper understanding about what really mattered to people and a YouTube film helped to dispel myths around talking about dying with people with learning disabilities. This learning informed an education programme for health and social care professionals about advance care planning for people with learning disabilities, and artwork developed into a community advance care plan quilt. The quilt forms a creative advance care plan, visually demonstrating people’s choices and wishes for the end of life and is displayed in the local community.

The approach has been developed further through a research study focused on people excluded from palliative care by identity, culture, ethnicity, and race, involving the recruitment of a new coproduction team and delivery of three cohorts of workshops with people identifying as from the Black migrant community, a group from the Roma community and a South Asian women’s group.

Through these projects the No Barriers Here approach has developed into an equity-oriented, arts-based approach to advance care planning. The richness of the project comes from a combination of meaningful coproduction, an arts-based approach, reflexivity (thinking about feelings, reactions and motivations) and challenging assumptions throughout each stage of the process. In each workshop, as facilitators, space holders and co-production partners we reflected upon our own degree of power and privilege, including white privilege, social and economic advantage and to recognise our differences to create inclusive dialogues and a safe space for all.

No Barriers Here has received growing interest from healthcare professionals and a facilitator education course has been developed for those who want to use a more equitable approach to advance care planning, particular with individuals or communities who can be excluded. The collective efforts of people shouting loudly about equity, co-production and the use of arts-based methods is not only improving equitable advance care planning but dismantling barriers to palliative care, whilst holding space for voices which are so often unheard.

We would like to conclude this blog by hearing directly from workshop participants about their views on this work:

If you are interested in finding out more about No Barriers Here, including their facilitator training, please email Gemma here.

No Barriers Here advanced care plan quilt.

Links and resources

  • Find out more about No Barriers Here, through their website and Twitter @NoBarriersHere
  • Click here to watch the No Barriers Here film
  • Find out more about the EAPC’s Reference Group on Intellectual Disability here and the 2015 EAPC White Paper here.

About the authors

Gemma Allen is the Palliative Care Inclusion and Community Partnerships Lead at The Mary Stevens Hospice and responsible for the operational management, leadership, education, facilitation and day to day running of No Barriers Here. Gemma works with under-served communities often adopting a public health approach to palliative and she has a keen interest in education and research. Gemma is Chair of the Palliative Care for People with Learning Disabilities Network (PCPLD). Twitter: @gemma_allen1.

Dr Jed Jerwood (PhD) is an art psychotherapist working in mental health.  He also holds an honorary research fellowship at the University of Birmingham. His clinical background lies in hospice care and in adult mental health. His research interests lie in health inequalities, particularly regarding death and dying; arts-based research methods and using creative approaches to deepen conversations in healthcare settings. He is the lead researcher on the No Barriers Here programme. Twitter: @JedJerwood.


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  • Register now!  Early Bird rate until 1st March 2023.
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Posted in ADVANCE CARE PLANNING, Intellectual disabilities, Minority Communities, PATIENT & FAMILY CARE | Leave a comment

Patient Navigators: What works, how, when and for whom?

Older people with cancer are at disadvantage when it comes to timely access to high-quality supportive, palliative, and end-of-life care. Dr. Joni Gilissen, Dr. Barbara Gomes and Prof. Lieve Van den Block hope that the new EU NAVIGATE project might help patients and their families get the care they need, through the work of patient navigators.


EU Navigate Consortium at the project kick off meeting.

Cancer disproportionately affects older people. In 2020, 60% of the estimated new diagnoses and 73% of estimated deaths occurred in people 65 years and older. Cancer care can be highly fragmented, complex and often difficult to navigate for patients and families, compromising care coordination and continuity, and patient and relative experience. Access to high-quality supportive, palliative and end-of-life care is often limited, especially for those who are older, living in rural or materially deprived areas, or who have lower educational and/or socioeconomic status. Additionally, although cancer care in Europe is highly advanced in achieving cures or prolonging lives, it still has a limited focus on psychological, social, existential, and practical care needs. Current cancer services also insufficiently address the needs of family caregivers, who fulfil essential care tasks, and provide practical and emotional help.

The intervention program

The overall aim of EU NAVIGATE is to implement a patient and family-centred navigation intervention for older cancer patients across supportive, palliative, and end-of-life care, to see if and how it makes a difference for patients, families, and care providers, whether it is cost-effective, and how it can be implemented in different healthcare systems in Europe.

For this project, we will carefully adapt Nav-Care©* to our European and local contexts. Navigation interventions are non-pharmacological interventions that aim to support, educate, and empower patients and families, and address individual and community barriers to timely access to healthcare and related services and resources. Their central component is a patient navigator, a dedicated person (with or without a health-related background) who is trained and engages with patients on an individual basis. Although there may be some overlap, navigation can be distinguished from care management/coordination as it is a much broader, more supportive role, grounded in frameworks of patient empowerment and health promotion. Navigators are not members of a healthcare team but instead help with navigating across services and advocate for services which a patient is not getting, with a focus on removing barriers to care. Navigation was originally developed in the early 90’s in New York to address barriers and health disparities related to cancer care, particularly regarding screening and early diagnosis. Since then, programs with varying features have been developed and tested, mostly in the US and Canada. With EU NAVIGATE, we aim to develop navigation in different European Union healthcare contexts and evaluate its outcomes.

What we will evaluate

Effectiveness and cost-effectiveness will be evaluated through an international pragmatic randomised controlled trial including 532 cancer patients, aged 70 years and older, and their caregivers. The intervention group receives NavCare-EU from the onset and the control group will receive it six months later. At this time point, we will compare outcomes in the two groups, i.e., NavCare-EU + standard care vs. standard care alone. The primary endpoints are patient’s quality of life and well-being. The trial will run over 30 months. We will perform mixed-method subgroup analyses and process and implementation evaluations in and across countries to better understand what works, how, when and for whom.

What we hope to achieve

One of the explicit goals of the intervention is to ensure equitable access to needed health and social care. The purpose of the pragmatic trial is to inform clinical and policy decisions by providing evidence to encourage further adoption of the intervention into real-world practice. By analysing barriers and opportunities we hope to contribute to re-invigorating and enhancing timely social inclusion and active engagement of cancer patients. NavCare-EU will be a freely available program (with tools for training and support) in which volunteer and/or professional navigators support people to access the local resources and services they need, while providing companionship and emotional support. We believe this can enhance access to the care that people need and improve their experience during this difficult time.

* Nav-Care was developed in 2009 and has been evaluated and refined in different areas of Canada by Pesut & Duggleby. It specifically focuses on older adults with declining health. Find out more about the original Nav-CARE© Programme here.

The authors are writing on behalf of the EU NAVIGATE consortium. This project is a collaboration between seven countries and three European Union organisations, coordinated by the End-of-Life Care Research Group of the Vrije Universiteit Brussel (VUB) and Ghent University. It is funded by the European Commission’s Horizon Europe programme under Grant Agreement No. 101057361.

Links and resources

  • Learn more about EU Navigate here and follow on Twitter@EuNavigate.
  • Find out more about projects supported by the EAPC here.
  • Read about more EU projects on the EAPC blog here.

The EAPC is delighted to be a core partner in a range of large EU-funded studies, with knowledge transfer and stakeholder engagement as primary focuses. To learn more about the EAPC role in this, and other projects, click here.

About the authors

Joni Gilissen, PhD, is a senior social health scientist at the End-of-Life Care Research Group (VUB & UGent), Belgium, and a senior Atlantic Fellow for Equity in Brain Health. During EU NAVIGATE, Joni will coordinate the adaptation, standardisation, and pilot testing of the NavCare-EU intervention and training program. ORCID: 0000-0002-5388-495X.  Twitter: @JoniGilissen.

Barbara Gomes, PhD, is the head of the Palliative, End of Life and Bereavement Care Research Group at the Faculty of Medicine, University of Coimbra. In EU NAVIGATE, Barbara is the Portuguese partner and co-leads the sub-group and country comparative analyses of the NavCare-EU intervention, to find out “what works best for whom”. ORCID: 0000-0001-8149-1806. Twitter: @B_Gomes_

Lieve Van den Block, Professor, is the head of the Aging and Palliative Care Research Programme at the End-of-Life Care Research Group (VUB and UGhent) in Belgium. She is Principal Investigator and coordinator of EU NAVIGATE.


SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.

  • Register now!  Early Bird rate until 1st March 2023.
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Posted in EAPC COLLABORATIVE PROJECTS, EU Navigate, PATIENT & FAMILY CARE | Leave a comment