How can palliative care be made more accessible to people who have experienced trauma?

People who would benefit from palliative care will have different needs for accessing the care that would help them.  For today’s blog, Anne Cullen and Jeannet Weurman tell us why we must develop approaches to palliative and end of life care that are more sensitive to the needs of people who have suffered psychological trauma – and ask for your help.


Credit: Ted Wallace, ‘Moving Through- Impressions’.

Early in 2019 I took a call from someone I will call Vicky (not her real name). She had been working as a care assistant when she was diagnosed with an aggressive cancer. Surgery had been delayed due to COVID-19, and by the time it could proceed it had been too late.  Chemotherapy had failed and she had been referred to palliative care.

In our phone calls Vicky told us that she lived with anxiety, depression, and Obsessive Compulsive Disorder (OCD) due to childhood trauma. Therapy had helped her to live a full life and manage these behaviours, but her cancer diagnosis and subsequent feelings of anger and loss escalated her OCD. After Vicky attempted suicide, she received some support from mental health and housing services. Despite this she reported feeling profoundly distressed and anxious.

Our hospice made contact with Vicky, but she was unable to respond to our help in the form that it was offered.  She managed just a couple of day therapy sessions and was then discharged as it was felt that she was not engaged enough to benefit. Eventually she came back to die in the hospice inpatient unit where she needed one-to-one care to manage her anxiety and behaviour.

Sadly, Vicky’s case is not unusual. Many healthcare professionals and social workers will recognise this picture of people carrying early trauma and/or trauma from the process of diagnosis and treatment, resulting in issues of trust, addictions and chaotic lifestyles. Such individuals can feel unsafe and alienated by the way services are organised, as reflected by Barbara Ganzel, who writes that:

‘…  patient-staff collaboration and patient care may be compromised because patients struggling with trauma histories are more likely to be anxious, depressed, distrustful, angry, and/or avoidant of trauma reminders, which may include medical settings and medical personnel.’  (1)

We need to develop approaches to palliative and end of life care that are more sensitive to the needs of people who have experienced trauma. With the support of Hospice UK, the Association of Palliative Care Social Workers has initiated a project to develop trauma-informed working in United Kingdom palliative and end of life care. We envisage this as comprising:

  • A community of practice to enable sharing of information, ideas, and resources, and to provide a source of advice and a way to consult with researchers and policy makers.
  • A programme of research to develop a sound evidence base, tools, and guidance for trauma-informed working.

We are talking to universities who may be willing to lead the research and a number of people have expressed an interest in researching this area for their professional doctorate or PhD research projects.  We are also keen to involve people with lived experience throughout the project.

We would welcome comments and discussion on this topic. We are eager to hear from anyone already doing research in this area or applying aspects of a trauma-informed approach in palliative or end of life care. Please do contact us directly to find out more or to tell us about your work in this area.  You can contact Anne Cullen here and Jeannet Weurman here.

We are hopeful that by working together – with the palliative care community, researchers, those with lived experience and other key stakeholders – palliative care will be able to provide the support needed by those who have experienced trauma.

Reference

(1) Ganzel, B.L (2018) ‘Trauma-Informed Hospice and Palliative CareThe Gerontologist, Volume 58, Issue 3, June 2018, Pages 409–419.

Links and resources

  • Read more about social work and palliative care on the EAPC blog here.

About the authors

Anne Cullen, Research Lead, UK Association of Palliative Care Social Workers and co-organiser of this project. Anne is a Registered Social Worker and has worked as a practitioner, manager and researcher in various fields of practice, and workforce development, including palliative care. She works currently as Schwartz Round mentor for The Point of Care Foundation. Twitter: @ladylovestorun and LinkedIn.

Jeannet Weurman, Member of the UK Association of Palliative Care Social Workers, and co-organiser of this project. Jeannet is a Registered Social Worker, now retired from hospice social work.  LinkedIn.


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
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Posted in Palliative Stories, PATIENT & FAMILY CARE, PSYCHO-SOCIAL ISSUES, Social work | Leave a comment

It’s time to nominate EAPC board candidates!

Professor Christoph Ostgathe, President of the European Association for Palliative Care, explains how EAPC members can get involved in making their nominations for the next EAPC Board of Directors.


Professor Christoph Ostgathe

All good things must come to an end . . .to allow for an exciting new chapter to begin! After four years (which seem to have passed very quickly), it is time for the members to prepare to elect a new EAPC Board of Directors for 2023-2027.  This year, the voting will take place online in June 2023, with the new Board announced at the EAPC General Assembly on 16 June 2023 during the 18th World Congress of the EAPC in Rotterdam.

It is important that the election process is clear and transparent and most importantly, easy to understand so that our members are given the opportunity to decide who should represent their views for the next four years.

We have set up an election committee comprising board members who will leave this year, having served the EAPC for up to eight years. Thank you is never enough . . . The election committee are Danila Valenti (Italy) and Catherine Walshe (UK).  They will be supported by EAPC’s Chief Executive Julie Ling and the Head Office staff in making sure procedures are followed. In May, we will explain the voting procedures and how the election will happen in June. We will keep our members fully informed, so please keep an eye on the EAPC website, the blog and our social media channels.

What does an EAPC Board member do?

Board members are paying members of the EAPC and are elected for a four year term, with an option to be re-elected once (an eight year term maximum). They are expected to play a significant role in the work of the EAPC, which will help the EAPC achieve its strategic objectives. This will include being involved in the work of the EAPC groups, participating in the congress planning process, contributing to EAPC meetings and congresses and maintaining contact with relevant national associations. Each year there are two two day in-person EAPC Board meetings, with a number of others being held online as required.

Who can be nominated?

To be able to stand for nomination to the board, you need to be a registered paying EAPC member. You should be either an individual member (living or working in Europe), or a member of your national (European) palliative care association. It is important that all membership subscriptions for the year are paid in full to have nomination and voting rights.

Who would make a good candidate?

We would welcome nominations from EAPC members who are actively involved in palliative care, passionate about promoting and developing palliative care, and interested in being part of the EAPC board.

Now is the time to talk with your national membership organisation to seek their support. If you are an individual paying EAPC member, living or working in Europe, and are considering stepping up for nomination, you need to find five other individual paying members who will support you.

The EAPC needs to speak to the broad range of people involved in palliative care. Diversity, equality and inclusion are important to us, and it is essential that our Board reflects this. It is really important for balance that we do not have over-representation from one particular group, and we would encourage and welcome nominations for candidates from a wide and diverse range of professions and countries. 

The current board has done great work. I know the next one will do the same. Who they will be is entirely up to you . . .

Links and resources

  • Find out more about EAPC membership here
  • Go to the EAPC’s Board election page to find out more about being a Board member, nominations and voting.
  • We have answered some frequently Asked Questions (FAQ) about the elections here
  • Read about the current EAPC board here.

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.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in EAPC ACTIVITIES, EAPC Board Members | Leave a comment

Våga Fråga! – Dare to ask about the children.

When a parent is diagnosed with a life limiting illness, services may be hesitant about what they can offer to their children. Dr. Steve Marshall, a palliative care social worker from the United Kingdom, tells us why identifying children as ‘next of kin’ can unlock the support and visibility that they need.


Photo credit: Annie Spratt

In February 2020, I was lucky enough to be awarded a Churchill Fellowship to travel to Norway and Sweden.  The purpose of Churchill Fellowships is to learn from other countries and bring that knowledge back to the UK.  As a palliative care social worker, I have always been interested in working with patients who have young children.  The Nordic countries are unique in recognising that the dependent children of seriously ill parents are a vulnerable cohort with unique needs.  In 2010, Norway and Sweden enacted legislation to establish  children as ‘next-of-kin’ and putting a duty on healthcare professionals to identify them and offer them support.  The pandemic put a hold on my travels, but in August and September 2022 I was able to travel around Norway and Sweden and learn how the concept of children as ‘next-of-kin’ is implemented, and the difference that this can make.

Prior to setting off on my travels, I researched who might be appropriate to share their experiences around this issue and devised a rough itinerary.  I met with a range of professionals, including clinicians working in palliative care and oncology, ‘children as next-of-kin’ co-ordinators, policy makers, researchers and academics.  I was also able to shadow colleagues and I even attended some home visits.  As well as visiting Oslo and Stockholm, I visited more rural areas, including Kristiansand in South Norway and Umeå in North Sweden.  Everyone I met was friendly, welcoming and knowledgeable, and I am eternally grateful to everyone who made my travels so rewarding, informative and enjoyable.

It became apparent that Norwegian and Swedish healthcare professionals are fundamentally child-focused.  Children are perceived as individuals with their own basic human rights, rather than being ‘junior’ citizens with less rights than adults.  There is a recognition that identifying and providing appropriate support to vulnerable children will help to ensure their wellbeing as they grow into adulthood.  A Nordic palliative care doctor was surprised that this issue required a fellowship.  He took for granted that the needs of children would be addressed when a parent is referred to his service and assumed that all other countries had a similar approach.  Professionals were already child-focused prior to 2010, however the legislation has provided a framework and justification for the consideration of children’s needs.  Every hospital in Norway and Sweden now has a Children’s Ombudsman, who has overall responsibility for children as next of kin in their organisation.  Every ward or clinic also has a designated lead for children, with allocated time to ensure that children are identified and offered information, advice and/or support from the staff. However I was frequently told that there is still a great deal of work to be done around this issue.  Patient confidentiality can be a barrier and despite encouragement, some dying parents will never agree for their child to be involved. 

My challenge now is to learn from my travels and begin to implement some changes in the UK. I intend to start locally and then think about the bigger picture.  I truly believe that palliative care professionals in the UK can learn from our Nordic neighbours and develop a more inclusive approach to children as ‘next-of-kin’, thereby ensuring that this vulnerable group have the support they need.

Links and resources

  • More information about ‘children as next of kin’ can be found on the Barnsbeste website here.
  • Click here to watch Steve’s recent EAPC webinar ‘Best practice for patients with life-limiting illness with dependent children’.
  • Find out more about the work of the EAPC’s Social work Task Force.
  • Read more about social work and palliative care on the EAPC blog here.

About the author

Dr Steve Marshall is a social worker in the palliative care team at King’s College Hospital and is an Honorary Senior Lecturer at King’s College London.  Steve combines research and teaching with clinical practice and has a particular interest in supporting children and young people.  Steve was co-Principal Investigator and lead researcher on a recent Marie Curie funded project which involved interviewing 32 children and young people about their experience of living with a parent with a life-limiting illness.  This research has provided the basis of evidence-based guidance for healthcare professionals working with patients with a life-limiting illness who have dependent children. Twitter: @hollowaystevo ORCID iD: 0000-0002-3728-7389.


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.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in BEREAVEMENT, Bereavement, Children and young people, EAPC Webinars, PATIENT & FAMILY CARE | Leave a comment

Can you capture the essence of palliative care in one image?  Enter the EAPC’s photo competition now!

For today’s blog, we hear from Claudia Sütfeld, EAPC Congress Coordinator, about what makes this competition so special  – and she invites you to submit your entries to the EAPC’s Third International Photography Competition.


‘Palliative Medicine is taking the extra step’, La Seiva, Trinidad, 2021.  Photo by Chelsea Garcia.

We are back! The EAPC photo competition premiered in Berlin 2019, it became established as a Congress highlight in 2021 and we are delighted to announce that the competition is now open for entries for the EAPC 18th World Congress 2023. This competition is open to everyone, not just delegates joining us in Rotterdam in June 2023.

Looking back at all the wonderful photos that you have entrusted to us in the last competitions, it is easy to see that palliative care around the world is the ‘same, same but different’. Your photos allowed us to share with you a very personal point of view of your life and work.

As different as these photos are, they all tell stories of one, single moment which somehow lets us hold onto something for eternity.  In the context of Palliative Care that seems almost strange.

So, we ask you to share what palliative care means to you. The theme for the photo competition is ‘Same, same but different’. Please enter our competition and send us your photos and stories reflecting your vision and views of palliative care.

The winner(s) will be announced during the closing ceremony of the 18th EAPC World Congress 2023 on Saturday, 17th June 2023. To help inspire you, below are some photos from our previous competitions!

How to enter:

Click here to find out more about the competition, how to enter and for conditions of entry.

The deadline for entries is 30th April 2023.

Thank you. Thank you to all who have shared their stories and pictures with us so far, who have given us their view of Palliative Care and thus allowed us to become part of their world. I have said it before and I am happy to say it again: That’s amazing. You are amazing.

‘Pallium’, Kosish-the Hospice, Jharkhand, India, 2021. Photo by Abhijit Dam.
‘Colours and Hope – Helping our palliative care patients to find hope through origami art!’, Malaysia, 2021. Photo by Julia Ho.
Still on the road. Rural palliative care in pandemic times’, Vallirana, Spain, 2021. Photo by Oscar Fariñas-Balaguer.

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.
  • Sign up to the EAPC blog to hear more about the Congress.
Posted in 18th World Congress, EAPC ACTIVITIES, EAPC World Congresses | Leave a comment

New Spanish Framework of Nursing Competencies in Palliative Care!

Ever since Dame Cicely Saunders founded the modern hospice movement, nurses have always been an essential part of palliative care.  The palliative care nurse role is evolving, and part of this evolution has been in regulation, education and in establishing core competencies for what a nurse needs to demonstrate to effectively carry out this role.  Not all European countries have these competencies though, and it is always good news when they are adopted by countries for the first time. Today, Marisa de la Rica Escuín, Doctor of Nursing Practice at the University of Zaragoza, announces a significant development in Spain.


Early in 2006, nurses who were members of the multidisciplinary Spanish society of Palliative Care (SECPAL) identified the importance of promoting the development and visibility of the role of the palliative care nursing professional. This was particularly important as there was no specific competency framework or formal regulated training for palliative care nurses in Spain, unlike countries such as the United Kingdom, Canada, the United States and Australia. As a result of this effort to develop this area of knowledge and training, the Spanish Association of Palliative Care Nursing (AECPAL) was founded in 2006, federated with SECPAL, maintaining the autonomous nature of the nursing profession as well as the interdisciplinary nature that characterises palliative care. 

In 2001, the Spanish National Palliative Care Plan defined for the first time the basis for the palliative care model. This plan included general principles for public programmes of palliative care to be implemented into the different regions of Spain. After this, since 2007, the Palliative Care Strategy of the National Health System stated, among other recommendations, which level of competencies were needed for future nurses to work in this field, including basic into undergraduate in nursing and advanced into postgraduate specific training in palliative care.  However, to date, there is no consensus on the roadmap to implement such specialised training.

One of the essential objectives declared by AECPAL was to develop its own competencies framework [1] which includes a specific training program for general competencies (for a basic understanding of palliative care) and then specific competencies for advanced level of intervention.  These two levels offer a training trajectory for palliative care nurses, which should connect to the corresponding accreditation of these healthcare professionals, as a path to excellence in the professional practice of palliative care nursing. In the search for a competency framework based on professional consensus, the research project which served as the basis for this framework was published in 2021[2,3].

As a result of all this work, we are pleased to present the Framework of Action for Nurses in the field of Palliative Care[4], a consensus document led by AECPAL and the General Council of Nursing of Spain. This framework facilitates the standardisation of the body of knowledge in nursing palliative care in Spain, both in undergraduate and postgraduate education; it advocates for patients to have equity of access to high quality palliative care; and it promotes the development of nursing ‘quality of care’ indicators for the continuing assessment and improvement of the healthcare system.

Moreover, this framework for palliative care nurses should be incorporated into academic, institutional, and organisational settings in accordance with social care and healthcare needs of patients with advanced chronic diseases and their families. The competency framework will allow:

  • academic and government programs to have a roadmap to certify nurses who meet these palliative care nursing competencies
  • guidance for education programmes and a reference for educators
  • enhancement of the competency profile in the palliative care nursing profession.

We hope that this framework will improve the experience of all patients who are facing their last phase of life, and their families. We believe it will also help palliative care nurses, and all the team, to feel more satisfied and safer as practitioners due to having these competencies while working in complex situations in palliative care. We know there is much work to do to improve access to and quality of palliative care in Spain and we feel our consensus document is a very significant step forward.

AECPAL Board of Directors

References

1 AECPAL. ‘Competencias enfermeras en Cuidados Paliativos’, 2013.

2 ‘Recommendations about training in palliative care in nursing degree of the Spanish PC Nurses Association’, 2019.

3  Guanter-Peris,L et al. ‘Spanish Palliative Care Nurses’ Degree of Acceptance of a Proposal for Nursing Competencies in Palliative Care’.Journal of Palliative Care, 2021.

4 ‘Marco de Actuación de las enfermeras en el ambito de CP’, 2022.

Links and resources

  • Read the Spanish Framework of Action for Nurses in the field of Palliative Care framework here (English version) or Spanish version here.
  • Find out more about the ‘Training recommendations for palliative care in nursing degrees’ from the Spanish Palliative Care Nurses Association’ here.
  • The EAPC has a Task Force on Innovation in Nurse Education – find out more here.

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.
  • Sign up to the EAPC blog to hear more about the Congress.

 

 

Posted in EDUCATION & TRAINING | Leave a comment