Sowing the Seeds of a Global Conversation: The Salzburg Questions Series

In response to Human Rights Day yesterday, 10th December, Katie Witcombe, Outreach Administrator for the Cicely Saunders Institute and one of the facilitators of the Salzburg Questions series, explains the importance of using digital campaigns to shine a spotlight on neglected issues and open up discussions to people all over the world.

Katie Witcombe

When the seed of an idea for a multidimensional series of questions was planted at the Salzburg Global Seminar in 2016, its capacity for growth was unknown. At a meeting to consider global opportunities and challenges in palliative care, which was attended by international experts in the field and facilitated by Professor Irene Higginson of the Cicely Saunders Institute, it was decided that an interactive, digital debate would be the most inclusive way to initiate conversations about the major issues currently facing palliative care provision and how best these can be tackled.

A global conversation, including monthly Twitter ‘launches’ to coincide with international awareness days, corresponding blog posts, podcasts, videos and reports, was planned for the following 12 months with academic and clinical leads spearheading the campaign from around the world. Since its conception, the Salzburg Questions series has achieved a reach which has surpassed expectations; there has been an average of nearly 500 views for each blog post, the #allmylifeQs hashtag has received more than 10.4 million impressions on Twitter and been used in more than 3,500 tweets, and the online reach has extended to 182 countries. Monthly topics have included the inequality of palliative care provision in low- and middle-income countries, the emotional and financial impact of caring for a loved one at the end of life and the future research needed to improve care for vulnerable groups such as refugees, people with complex physical symptoms, and those living in poverty. The series has given project teams and researchers from world-leading institutions the opportunity to showcase their most recent research into global healthcare trends, place of death, how to support an ageing population and treatment for non-cancer conditions. These issues affect millions of people worldwide, and the application of this work into actual clinical practice has the potential to markedly improve the quality of life for patients and families approaching the end of life.

Ultimately, the Salzburg Questions series has highlighted the appetite that exists for discussions about the issues affecting palliative care, and the role that online platforms such as Twitter have to play in these global conversations. In this digital age, closed-room discussions are becoming a thing of the past and impact can be measured in re-tweets and shares. Twitter discourse is a democratisation of the decision-making processes which have governed research for so long; people from all demographics and backgrounds can now help to shape the direction of future work by signposting the areas which they feel need the most investment. In the aftermath of Human Rights Day this weekend, an increased awareness of vulnerable or neglected groups should be celebrated, as should the involvement of patients, carers and families in these discussions. The blog posts published monthly by the European Association for Palliative Care (EAPC) may have been produced by experts in fields as diverse as global health inequity, patient and carer psycho-social needs, advance care planning and epidemiology, but it is the responses from researchers, clinicians and members of the public which have enabled this series to gain momentum and relevance over time.

From tiny seeds, tall oaks can grow, and we hope that the roots that were laid over the course of the campaign will continue to flourish. The enthusiasm and engagement with which this series of questions has been met is a clear signifier of the conversations which people from all over the world are ready to have about the lasting need for high quality, effective and accessible palliative care. 

Links and Resources

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Sharing Stories for Wellbeing

In this new series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Alison Ward, Researcher at the University of Northampton, UK, Miranda Quinney, Storyteller and Biographer, Watford, UK and Jane Youell, Dementia Specialist Consultant, Milton Keynes, UK, recently presented a poster outlining the programme, Sharing Stories for Wellbeing, at the Facing Death Creatively conference at St Christopher’s Hospice, London, UK.

Left to right: Alison Ward, Miranda Quinney and Jane Youell.

St Christopher’s conference explored ‘how the Arts can be utilised to make sense of and provide comfort at the end of life and in bereavement’. We were delighted for the opportunity to share an outline of the life storytelling programme that Miranda has been developing since 2011 and which was evaluated by Alison and Jane of the University of Northampton in 2015. Here, we seek to explain the inspiration for developing the programme and why it has attracted so much attention.

As a professional storyteller and biographer, Miranda was fascinated that biographical stories were often heard by friends and family for the first time as part of a eulogy. It seemed a shame that the story had not been shared earlier but finding the time and opportunity to share seemed to be a problem. A chance encounter with the team at a local hospice provided a solution to accessing people with stories to tell, in a supportive environment prepared to encourage the sharing. Miranda went on to develop Sharing Stories for Wellbeing (SS4WB) over the next few years offering storytelling workshops for small groups of people in palliative care, to share their life stories using themes as topic guides. These sessions are facilitated by experienced session leads and hospice staff. Stories are written by the facilitator and ‘gifted’ back to the participant who can keep and share their stories. SS4WB aims to: recount and record life stories; provide opportunities to reflect, accept and understand; provide opportunities to acknowledge the value of life and the contribution made; provide opportunities to make sense of experiences, express emotions and be able to move on. Anecdotal reports found that sessions enabled participants to gain control of their lives and to build confidence and self-esteem.

Sharing Stories for Wellbeing: The role of life story work in palliative care,  presented at St Christopher’s Facing Death Creatively conference, 13 October 2017.

In 2015, the University of Northampton evaluated SS4WB, led by Alison and Jane. Using a mixed methods approach, the evaluation undertook participant observations (n=2), face-to-face interviews with hospice staff (n=3), family members (n=1) and participants (n=3). The data from all elements were analysed thematically and four core aspects of the value of SS4WB emerged: ‘pleasure’; ‘what makes you, you’; ‘more than just a patient’; ‘benefits beyond the group’. Participating in SS4WB led to feelings of control, confidence, enjoyment of the sessions, and of being valued. Participants found the social aspects of the sessions of particular importance, forming new friendships and bonds by being together in the group.

When observing SS4WB workshops, we noted that an important part of the workshops is also listening to other people’s stories and offering validation of their experiences. Engaging in story work can provide a way to reflect on what can be a life-changing diagnosis, offering positive impacts on people’s wellbeing, quality of life, sense of self-identity and socialisation. Story work can help to make the past meaningful and the future have purpose (Romanoff & Thompson, 2006) and working in groups can create a collective meaning to the process (Abma, 2003).

News of the workshops and the positive link with wellbeing began to spread in the palliative care area. Hospice UK and the National Council for Palliative Care (UK national charities) supported master classes for palliative care practitioners keen to learn how to facilitate sharing stories groups as part of their own practice. Individual hospices requested in-house training for staff with a variety of backgrounds including spiritual care, creative therapists, volunteer helpers and clinical teams. Conference programmers in the UK and beyond have invited SS4WB to share their findings.

Storytelling is something we all naturally do as humans, indeed, it is part of what makes us who we are. The training workshops provide a simple, achievable framework for life story sharing which we can then adapt to the unique needs of our patients and environment.

Links

  • Next week: Victoria Swan, Music Therapist at Demelza Hospice Care for Children. Read more post in the Arts and Palliative Care series on the EAPC Blog.

References

Abma, T.A. (2003) Learning by telling, storytelling workshops as an organisational learning intervention. Management Learning, 34 (4), 221-240.

Romanoff, B.D. and Thompson, B.E. (2006) Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts. American Journal of Hospice & Palliative Medicine, 23 (4), 309-316.

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Celebrating hospice and palliative care volunteers

 

Ros Scott and Leena Pelttari, Co-chairs of the European Association for Palliative Care (EAPC) Task Force on Volunteering in Hospice and Palliative Care.

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

Today is the United Nations (UN) International Volunteer Day, a day on which volunteering is celebrated around the world. The UN describes this as a day which recognises: “the positive solidarity of volunteers around the world who answer calls in times of crisis, helping to save lives today and supporting those who want to continue living their lives with dignity tomorrow”. The theme this year is ‘Volunteers Act First: Here. Everywhere’.

It feels as if this theme could have been developed specially for volunteers in hospice and palliative care. So what better time to take a moment to stop and reflect on the countless volunteers worldwide who work in hospice and palliative care. A time to reflect on and celebrate the many different ways in which volunteers make a difference to people of all ages and backgrounds facing the end of life and helping both them and their families to ‘continue living their lives with dignity’ for as long a time as they have left.

Community Volunteers with patients, Kozhikode, Kerala, India. Photo with kind permission of the Institute of Palliative Medicine, Kozhikode, Kerala.

We have been very moved by what volunteers have told us of their experiences in hospice and palliative care as part of our story project; one of several that our EAPC Task Force on Volunteering is working on at present. They have told us of their commitment to making the lives of those facing the end of life better; of wanting to make a difference by helping in practical ways or by ‘ being there’ to provide emotional and spiritual support. They tell us that this work can be both difficult and rewarding, and they share the difference that this makes to their own lives in understanding more about death, dying and bereavement.

Volunteers are such an important part of hospice and palliative care, but their role is not always well recognised. It was this that led us to develop ‘Voice of Volunteering. the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care. The Charter aims to promote the vital role of volunteers in hospice and palliative care and their contribution to holistic care of patients to the sustainability of services.

Volunteers do seem to touch the hearts of many of us who work in hospice and palliative care and more than 2,000 people from 26 countries have signed the Charter so far, either online or on paper. Their comments, such as the one below, have highlighted how important volunteers are to the work that we do.

“Volunteers, as core members of our communities, support and sustain the value of palliative care in society … would not be possible without volunteers! Thank you.”

So on this International Volunteer Day, take a moment to stop and reflect, and if you can, spend some time with volunteers in your own workplace or setting and thank them for the difference that they make to the lives of others.

Thank you to volunteers in hospice and palliative care ‘Here. Everywhere.’ Please show your support for their amazing work by signing Voice of Volunteering: the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care. 

 

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A medical student’s journey into palliative care

Lucy Taylor is a fourth-year medical student at the University of Leicester, Leicester, UK. Her winning entry for the Royal Society of Medicine Palliative Care Section’s essay prize on the future of palliative care is published in the September/October issue of the European Journal of Palliative Care. Here, Lucy explains how she gained exposure to palliative care and what she learned along the way.

Lucy Taylor

When I saw the topic of the Royal Society of Medicine Palliative Care Section’s essay prize: the future of palliative care, I immediately wanted to enter. It was a great excuse to spend time developing the thoughts I’d gathered through my experiences, and try to come up with some practical solutions.

During my second year at medical school, I began to seriously consider palliative care as a specialty, and I realised the importance of gaining as much exposure as possible.

The simplest way I manage this is by proactively identifying and shadowing the palliative care input in each clinical rotation. For example, on my primary care placement, I attended a nursing home visit and shadowed the Hospice at Home team. In hospital, I try to see the patients who are identified as requiring palliative input both with the base specialty doctors and the palliative team. It can be daunting to ask to do this – I’m always worried that people will think I’m being insensitive by crowding the patient. So far though, very few doctors have asked me to leave and the patients are generally happy to have me there.

I arranged an extracurricular placement at LOROS Hospice during a university holiday and later worked there as a bank healthcare assistant. Through this, I gained exposure to hospice care from a perspective that I won’t be able to experience later in my career. One afternoon, a group of primary school children arrived at Day Therapy. I observed the arts and crafts project that they were participating in with some of the patients, and listened to their conversations. The inquisitive questioning from the children, who were old enough to be sensitive but hadn’t yet developed a taboo about these discussions, led to death and dying being discussed openly. Having experienced the difficulty of having these conversations within my own family, I was mindful that the patients might not have been able to verbalise what they were telling the children before this encounter. The therapeutic effect of the afternoon on the patients was obvious. Imagining the children going home and talking to their parents about the new friends they’d made at the hospice, I hoped that hospices would seem less daunting to the whole family, and maybe it would even prompt further discussions about death.

Leicester University offers a Medical Research iBSc, in which students undertake a year of research. I contacted Professor Christina Faull at LOROS Hospice, who kindly offered to supervise my involvement in her research into discussing DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) orders with people from minority ethnic communities. During that year, I spoke to many healthcare professionals, researchers, patients and relatives about the importance of palliative care, the challenges it faces, and attended conferences where the future of palliative care was the focus of conversation.

I also work in my spare time on the administration side of the University Hospitals of Leicester’s Medical Examiner process. A senior consultant reviews the care of every patient who dies within the Trust and speaks to their relatives to ascertain whether anything could have been improved or learned from. This gives me an insight into the issues concerning palliative care in my local area.

Winning the prize was unexpected, but this, and getting my essay published in the  journal, has encouraged me that though I am inexperienced, I am thinking along the right lines! 

Read Lucy’s prize-winning essay in the European Journal of Palliative Care

This post relates to a longer article, What’s next for palliative care?’ by Lucy Taylor, published in the September/October 2017 edition of the European Journal of Palliative Care (EJPC). (vol. 24.5).

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

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

 

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Dramatherapy in palliative care . . .

In this new series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Today, Alex Ioannou, HCPC-registered Dramatherapist, St Christopher’s Hospice, London, UK, explains how dramatherapy can help people to express emotions that are difficult to put into words and to feel heard and supported.

As a dramatherapist working at St Christopher’s Hospice, there are plenty of rewards as well as challenges. Aside from the emotional labour that is common to most hospice and palliative care professionals, the most frequent challenge is explaining what my work is, whether talking to patients or other staff.

Do we put on plays with patients? Interpret the complete works of Shakespeare or dress up? Unfortunately, the answers might not be a simple yes or no.

The word dramatherapy is a composite one, made up of two words. Drama and therapy. Both of these two notions have the capacity to generate reluctance and apprehension to those who hear them. So let’s look at each one of them separately.

Masks made and worn by patients to explore different aspects of self.

Drama comes from the Greek word ‘drasi’ meaning ‘action’ or ‘doing’. In the English language, the words used to describe drama before the time of William Shakespeare were ‘play’ or ‘game’. And this is where the heart of dramatherapy lies – as something active and playful. Using storymaking, movement, masks or metaphor can help people to express emotions that are difficult to put into words and, through the relationship with the therapist, to feel heard and supported. Self-expression offers people a chance to not be passive recipients of care, but active enactors of self-care.

A man I worked with chose to create an enactment of a story where a man is found wounded. He reported that seeing the wound as part of a story helped him feel the immensity of his terminal diagnosis in a non-overwhelming way. He was thus able to start moving from a place of denial, passivity, and despair to one where he started expressing difficult emotions, and to have greater affection and gratitude to those around him.

Whilst being active and ‘doing’ is important for anybody faced with a terminal illness, ‘doing’ does not always involve or lead to feeling. But when the pleasure of the process is the dominant motivation, then the activity also enhances a sense of ‘being’. And this is where the word ‘therapy’ comes into play as a notion that enhances the person’s own capacity for healing.

Artwork of a patient reflecting on their relationship with time. The drawing was made following an exploration using movement and visualisation work.

By reflecting and acknowledging how things are in the present, and without trying to change anything on an emotional level, calmness and a state of acceptance and forgiveness can be reached.

A woman I met in the last weeks of her life described being “in a dry, dusty desert”. Over our few meetings she would use her imagination to describe her journey through the desert, where she would meet and talk with old friends until she found peace in the shape of a small pond. At the same time, she was making contact with these friends outside our sessions and working towards having some sense of closure with them.

Dramatherapy takes place both in groups and as a 1-1 intervention. At the centre of this therapeutic practice, is the understanding that deep, meaningful connection between humans is the best antidote for our fear of death. A connection which honours what happens in each person’s dying process, and where the therapist as a faithful witness will not try to attach and hold someone back, but rather will help them to let go when the time comes.

References

Duggan M and Grainger R. (1997). Imagination, Identification and Catharsis in Theatre and Therapy. London: Jessica Kingsley Publishers.

Jenkinson S. (2015). Die wise: A Manifesto for Sanity and Soul. Berkeley: North Atlantic Books.

Yalom I. (2008). Staring at the Sun: Overcoming the Fear of Death. London: Piatkus Books.

Links

Read more post in the Arts and Palliative Care series on the EAPC BlogNext week, Alison Ward, Miranda Quinney and Jane Youell will be writing about Sharing Stories for Wellbeing …

 

 

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Facing death creatively at St Christopher’s

In this new series, The Arts in Palliative Care, we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.

Avril Jackson, Information Officer/Editor, European Association for Palliative Care Social Media Team, gives her impressions of the annual conference organised by the Arts Team at St Christopher’s Hospice in south-east London, UK.

 

The Arts get to the crevices of the soul in ways that words can’t.” (Julia Samuel, Psychotherapist, on opening the conference.)

With no specific training about the Arts in Palliative Care, but wanting to prepare for this current series on the blog, I attended St Christopher’s arts conference. This annual event has become a meeting space for art and music therapists, psychotherapists, dramatherapists, community artists, storytellers and writers involved in palliative and end-of-life care.

By the end of the day, I had begun to understand a more creative way of facing death – how the Arts can be used to heal when someone is broken or grieving, to make sense of and provide comfort at the end of life and in bereavement. Grouped under Resilience, Resistance, Revolution and Reflection, presentations, interactive workshops and posters revealed how to unlock channels of blocked communication and encourage self-expression.

Resilience

Francis, a patient, explained how, since becoming ill, he had not played his guitar – a huge part of his life for years. But through a collaborative music project between St Christopher’s and students of the Brit School of Performing Arts Francis took up his music again and performed with one of the students. He said:

Just the participation involves coming out of yourself … putting yourself into some form of expression and creativity … it helps you understand where you are and where you are going.”

Ray Travasso, a music therapist at East Anglia Children’s Hospice, explained how music therapy could be just as powerful and healing to parents as to the children. ‘Music Therapy and Cake’ is the title of a group music therapy session he runs for young children and their families, followed by all-important social time for parents. Music therapy is also part of bereavement support with a hospice community choir that welcomes bereaved mothers as well as non-bereaved people. Led by the mothers themselves, the choir is building their self-confidence and greater resilience.

In her dramatherapy workshop, Mary Smail gave us a taste of facing uncertainty as she creatively combined storytelling, movement and props. I enjoyed the practical involvement and how it felt to be a part of the story. Asked how to base your choice of story, Mary emphasised the need always to be led by the conversation with the patient and only promote stories that you believe in.

Revolution: Art & Ideas, images from the mural-making project created by patients attending the Creative Arts Therapy workshop at St Christopher’s. Photograph courtesy of Alex Ioannou, St Christopher’s Hospice.

Revolution

Maria Mota, an art therapist at St Christopher’s, described the revolutionary mural-making project displayed on the hospice walls. Inspired by a visit to the Royal Academy of Art’s exhibition about Art in the Russian Revolution, patients created their own propaganda posters using different media such as linocuts and collage.

Caption introducing the mural that is displayed in the hospice.

Brexit, cuts in expenditure for health and social care, immigration, global warming and President Trump were frequently referenced. As patients moved between groups there was refreshing and positive comment, occasional clashes and, importantly, “people expressed things they felt strongly about”.

Just a glimpse of three of the many inspiring presentations that helped me to understand what it means to face death creatively. What I loved most was the unfailing emphasis on the patient’s story: whether it was reconnecting patients with former skills and interests, with themselves, or with their families.

Look out next week when Alex Ioannou from St Christopher’s, one of the speakers at the conference, will be writing about dramatherapy in palliative care.

Links

  • Look out for the 2018 conference led by the Arts Team. Check St Christopher’s website for further information on education and training events.
  • Read more post in the Arts and Palliative Care series on the EAPC Blog.

 

 

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France publishes palliative care pathways guidance – Organisation of pathways: Essentials of the palliative approach

Dr Caroline Latapy, Project Manager, Quality Improvement and Safety of Care, at the French National Authority for Health (HAS), explains how they developed a pathway document to identify adult patients who could benefit from a palliative approach.

Dr Caroline Latapy

We are delighted to share with readers of the EAPC Blog our palliative care pathway document that is now available in English as a free download from our website. The aim of the pathway is to develop an integrated palliative approach and help healthcare professionals, in institutions and in the community, provide better care.

Our publication, Organisation of pathways: Essentials of the palliative approach is aimed at healthcare professionals and those working in the social and residential care sector, including doctors, pharmacists, nurses, nursing auxiliaries/healthcare assistants, home helps, social workers, and clinical psychologists.

Why it was necessary to create a pathway

The Haute Autorité de Santé (HAS) – The French National Authority for Health – contributes to the regulation of the French healthcare system by improving health quality and efficiency and has been involved in palliative care for several years.

The Haute Autorité de Santé decided to help improve knowledge and information that would lead to better patient care, claiming that:

  • Palliative care does not just mean caring for people in their final days or weeks of life but is something that can be introduced earlier on, during the progression of a life-limiting illness, in order to improve the quality of life of the patients and of their family;
  • Palliative care is the responsibility and the concern of all healthcare professionals and those working in the social care sector and residential care facilities;
  • Palliative care is not the exclusive preserve of dedicated units or teams and can be given wherever it is needed, whether in the patient’s home, a medical welfare establishment, or a hospital.

First steps to creating the pathway

First, we set up a multidisciplinary and multi-professional working group of 17 professionals and representatives of patients with general practitioners, a geriatrician, a neurologist, a respiratory specialist, an oncologist, palliative care specialists, nurses, a psychologist, a psycho-oncologist, representatives of patients and a representative of volunteers.

As the project manager, I searched the literature to identify and select the relevant references, analysed and summarised the available literature in the form of an evidence report and wrote a draft document. The members of the working group revised the wording and created an initial version. Thirty-two professionals and representatives of patients, and users of the healthcare system constituted the peer review group: they gave a formal opinion on the content and form of the initial version, which was amended according to their comments.

The final version of the text, as well as the evidence report, was submitted to the HAS bodies responsible for validation and the HAS board validated the document giving authorisation for its dissemination.

We have heard that several professionals have commented that the document has helped them to understand the palliative approach, to improve the patient’s pathway and to teach palliative care to students or professionals involved in continuing education.

Links and resources

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