Neuro-palliative care in India

Neurology in palliative care is receiving an increasingly high profile at global conferences. Professor David Oliver, European Association for Palliative Care (EAPC) Board Member and Chair of the EAPC Neurology in Palliative Care Reference Group, reports.

Professor David Oliver

In Bengaluru (Bangalore) in South India, a conference was recently held on Neuro-Palliative Care, organised by Karunashraya Hospice and the Forum for Indian Neurology Education, with financial support from Sun Pharma. The aim of the three-day meeting was to allow neurologists and palliative care professionals to meet together and learn more about the role of palliative care for patients with neurological disease.

Although palliative care has been increasingly discussed for people with neurological care in many countries there has been limited development in India. Palliative care services have been primarily focused on the care of cancer patients but this is changing and many hospice and palliative care services are including people with non-malignant disease.

I was delighted to be part of the international faculty for the meeting. Professor Janis Miyasaki, from Edmonton Canada, and Professor Maisha Robinson, from the Mayo Clinic, Florida in the USA were also involved. The conference also brought together neurologists and palliative care professionals from India who presented on various aspects of palliative care and included the opportunity for all the delegates to be involved in four role play scenarios.

I spoke on the recent Consensus document produced by the European Academy of Neurology and the EAPC to introduce the concepts of palliative care (see a previous blog post ) Janis spoke on dementia and Parkinson’s disease and Maisha spoke on advance care planning.

Faculty members at the conference.

There were many positive comments from delegates including:

“ It helped me to understand myself as a person and as a doctor. It will help to improve the outlook for our patients’ families, especially [the] elderly. We learned how to improve the happiness quotient of our patients and caretakers so that there is much to give them besides a prescription.”

“Wonderful, innovative, never before held meeting. Much to learn and think about, and it all added new dimensions to our practice.”

“The course helped to redefine the scope of medical therapy and management. This will help us in becoming better human beings and practising the art and not just the science of medicine.”

More than 35 neurologists attended the course, which is one of the first in the world looking solely at this area of care. They enjoyed taking part in the role play exercises, even though these were totally new experiences in Indian medical education. Dr Jeremy Johnson, the Director of Education and Research at Karunashraya Hospice, and Dr Roop Gursahani, the organisers of the course, said:

“We were delighted at the attendance and the feedback has been very positive. The aim is to increase the opportunities for collaboration between neurology and palliative care, to enable patients to maintain as good a quality of life as possible. We feel that there has been a real step forward and the first steps have been taken to meet these goals.”

Links and Resources

More about the author
Alongside his role within the European Association for Palliative Care, David Oliver is an honorary professor at the University of Kent and a retired consultant in palliative medicine at the Wisdom Hospice in Rochester, Kent, UK.

 

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When the artist becomes leader … some thoughts

In this continuing 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, Nigel Hartley, Chief Executive Officer, Earl Mountbatten Hospice, Isle of Wight, UK, explains how the skills of a trained and practising musician are useful in understanding organisational culture and climate.

Nigel Hartley

It is unusual in UK hospices/palliative care services for someone who has worked as a music therapist to undertake a career progression where they eventually become CEO. I began my career as a music therapist, working at London Lighthouse almost 30 years ago. Since then I have worked in four hospices in Oxford and London, and currently I am CEO of the hospice on the Isle of Wight in the south of England.

I have been reflecting on what one’s professional background brings to a leadership role that is unique. It is more common that CEOs of hospices have a background in one of the main clinical professional disciplines such as nursing. What does having been a musician and music therapist bring to a leadership role, which is uncommon and unexpected and offers insights into the role and organisation that might differ from others with other backgrounds and experiences?

Firstly, I think there are common misconceptions about artists and musicians as being undisciplined. Creativity is often viewed as being able to ‘wing it’, to ‘play it by ear’, and sometimes we are viewed as a little ‘fluffy around the edges’. On the contrary, as a musician I spent hours perfecting my craft, studying music and technique in a microscopic way, much like the discipline and craft of a doctor. With such fine, detailed examination of music, I learned to be the best I could be. I also learned about order and control, about the benefits of repetition and also of assessing risk. As an improvising musician, I know about the opportunities that come with what, in other professions, might be thought of as mistakes. In music, mistakes offer opportunities for different direction, for potential and new ways forward.

Working in a health service where most people are afraid of taking risks or of getting things wrong, I find I have a much healthier view. It is OK to get things wrong, as developing a culture where mistakes are part of normality, and changing direction, can be a good thing that fits well into a set of behaviours that I learned to manage as a skilled musician. These behaviours also included a developed and well-practised sense of listening; paying attention in ‘minute particulars’; listening to every note, to every small change in dynamic and colour. These skills prove intensely useful in understanding organisational culture and climate, which often changes imperceptibly on an hourly and daily basis.

The artist as leader brings hope, movement, flow and danger. I have come to acknowledge that danger, which, if handled in a creative and productive way, can pay dividends. Innovation, if about anything, has to be about taking risks, pushing something new and different when something new and different is needed. Roy Lilley, at nhsmanagers.net (1st November 2017) wrote:

“Innovation does not come with well-researched evidence and a well-informed public. It comes with ragged edges, incomplete and bits hanging off. It battles with prejudice and preconceptions. Innovation is not neat, oven-ready and complete. It is born of ideas and inspiration, needs imagination, courage and risk takers.”

There is no such thing as neat edges and the familiar in artistic creativity. Newness is born out of struggle, challenge and danger. This is something which every artist and musician will recognise and live on a daily basis. In my opinion, it is also what every developing and living organisation needs now and into the future.

Links and resources

  • Earl Mountbatten Hospice.
  • A Guide for Therapists, Artists and Art Therapists by Nigel Hartley, published by Jessica Kingsley Publications, 2013.
  • The Creative Arts in Palliative Care, N Hartley and M Payne (eds.), Jessica Kingsley Publications, 2008.
  • Creativity, Discipline and the Arts at the End of Life: An Interview with Nigel Hartley – interviewed by Andy Ridley. In Approaches: An Interdisciplinary Journal of Music Therapy, Special Issue 8 (1) 2016.

Read more posts in the Arts and Palliative Care series on the EAPC Blog

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ECHO ­– working collaboratively to reach more patients

Professor Max Watson is a palliative care clinician and Director of Project ECHO at Hospice UK in London. In this background post to his longer article published in the November/December issue of the European Journal of Palliative Care, Max explains how the ECHO methodology can bring hospice care to more patients.

Professor Max Watson

Over the years there have been several initiatives that have promised much in terms of improving access and availability of palliative care services to more people in need. The dramatic changes in the demographics of the UK make this pursuit ever more important. It can be anticipated that one in eight of the current population will reach the age of 100, which is a wonderful success story, but it is also likely that when their telegram, or email, arrives from the Queen it will be read in between taking a significant selection of treatments for a wide range of co-morbidities.

So how can we respond to such growth in demand when the headlines over Christmas tell of an NHS (national health service) in crisis with overrun accident emergency departments, routine operations cancelled and unprecedented waiting times to be seen out of hours?

Somehow, we need to develop new ways of delivering our services and take fuller advantage of our healthcare professionals’ skills. At the same time, we need to mobilise non-professionals and volunteers, many of whom will come from that same older generation who have the capacity and the ability to contribute to and engage with the delivery of social and health care support in their own communities.

Project ECHO (Extension of Community Healthcare Outcomes) is a not-for-profit movement to improve care by gathering together a community of practice for learning and support with the goal of improving decision-making by collaborative problem solving using video conferencing. Typically, an ECHO network will be championed by a leader with a vision to improve service delivery and will include an initial meeting at which the community of practice will establish the curriculum and the meeting dates. Each meeting involves a didactic teaching session followed by case presentations. Each meeting is supported by a trained facilitator, with dedicated IT and administrative support using a hub and spoke model and video conferencing software that is provided by ECHO, because of its ease of use and narrow bandwidth.

An example of ECHO in the palliative care context might be a hospice using ECHO to link in with care homes, or pharmacists, or out of hours services in their area, using a tele-mentoring approach to build a community of practice linking central and local community expertise to improve the quality of clinical decision-making. ECHO as a methodology allows for the governance and building of such networks that extend beyond healthcare professionals to supporting carers in the community or helping communities to better understand and support the frail, or those living with chronic disease.

Hospice UK is committed to the use of ECHO methodology so that the reach of hospices can be extended and more patients receive the support that they need. Already, more than 100 organisations have expressed interest in becoming ECHO hubs, with immersion training for new hubs starting in March 2018. Please see the links below if you would like more information and watch the short video.

Links and resources

Read the full article in the European Journey of Palliative Care
This post relates to At the hub of things’ by Max Watson that is published in the November/December 2017 edition of the European Journal of Palliative Care (EJPC) (vol. 24 (6). (If necessary, choose ‘Browse the archive’, 2017/November/December).

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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The Schubert dressing – an innovative experience from France

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, Claire Oppert, Cellist and Art Therapist, Unité douleur chronique et soins palliatifs, CHU Sainte Perine, Paris, France, explains how music can help to relieve patients’ anxiety and pain during painful procedures.

Having trained in three different disciplines, I entered the field of palliative care in 2011 wearing three hats: as a cellist (Moscow Conservatoire), a philosopher (a Masters at the Sorbonne, Paris) and an art therapist (Faculté de médecine de Tours – University of Tours medical school). After much experience with autistic patients and those with dementia, the focus of my research is now on end-of-life patients.

Claire with a patient at the CHU Ste Perine, Paris. Photo courtesy of RTS (Radio Télévision Suisse).

The name, ‘Schubert dressing’, was inspired by an impromptu music session with an 84-year-old patient. The lady was in intense pain during her treatment but found enormous relief as she listened to me playing the slow movement of Schubert’s 2nd trio on my cello. This creative experiment led to an open, prospective, non-randomised comparative study conducted over four years which included 107 painful care procedures, such as complex dressings, bed baths and hair washing, intra-venous and intra-catheter insertions, difficulties in moving patients, or therapeutic baths.

Using a validated pain scale, nurses assessed communication and pain during care sessions on alternate days: one with a cello accompaniment and one without. Pain relief was evaluated at 10 to 50 per cent following a ‘Schubert dressing’ session, demonstrating its effectiveness as a non-medical analgesic.

In spite of methodological difficulties, we find that the emotional impact of the music is beneficial to both the patient and the carer who provides the treatment. Bringing the patient and carer into contact with Art through music relieves the patient’s anxiety and improves the carer’s psychological wellbeing too.

To develop my understanding of patients’ experiences during music therapy sessions, I did a retrospective, exploratory and qualitative study based on methodical analysis of the words uttered by 250 patients.

This analysis reveals through a growing acceptance of ‘beauty’, true symptom relief with genuine sensory satisfaction expressed. Despite the complexity of the patient’s experiences, an ‘existential renewal’, of what is referred to as the patient’s ‘deep core’, appears in many of the words spoken. During this shared musical pause, patients also describe a unifying movement in time and a possible revival in their family relations. This embodied experience, mediated by music and the human encounter, appears also as a yearning for transcendence.

Links and Resources

Read more posts in the Arts and Palliative Care series on the EAPC Blog.

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How is ascites managed in UK hospices?

Dr Clare Statham and Dr Paul Perkins work in the hospital and hospice setting in the UK; here they explain the background to their article published in the September/October issue of the European Journal of Palliative Care.

Dr Clare Statham

Ascites – the accumulation of serous fluid in the abdominal cavity – can result in distressing symptoms for patients,1 including bloating, nausea, breathlessness and disturbances in body image, and these can be helped by paracentesis (fluid drainage).
Paracentesis may be carried out in hospices and, rarely, patients’ homes. We are interested in practice in the hospice setting, so we conducted a study to examine ascites management
in UK hospices.

The current drive for patients to have access to specialist palliative care earlier in their illnesses 2 means that there will be increasing numbers of more complex patients receiving hospice-based care. Many oncology units and general hospitals can safely offer paracentesis – so should hospice resources be used to offer this service? For patients with a very limited life expectancy, paracentesis performed in the hospice, in order to improve comfort, without the discomfort of going for a hospital scan, may be justifiable.

We used the directory of the charity Hospice UK (formerly Help the Hospices) to identify adult hospices in the UK with inpatient facilities. A questionnaire was then sent out to try and compare practice between hospices. A total of 191 hospices were contacted, and 78 replied.

Of 78 respondents, 57 said that a patient with ascites had undergone a paracentesis in their hospice within the last year; 21 said that they had not performed paracentesis in the last year. Fifty-one respondents answered the question that asked if their hospice had a scanner – of these, 30 didn’t have a scanner.

Some of the reasons for not performing paracentesis raised by respondents included concerns around the skill levels of staff: We would have to re-skill ourselves as they are all locally performed under USS (Ultrasound Scan) guidance at the local trust.

There was also concern about the cost of buying and maintaining ultrasound equipment with current financial pressures both in the NHS and in the independent sector.

Our study showed that there is considerable variability in the management of ascites in hospices in the UK, but with little robust evidence to guide practice, this is perhaps not surprising. We hope that the results will encourage hospices to look at their practice, and encourage further debate regarding the management of patients with ascites.

References

  1. Kichian K, Bain V. Jaundice, ascites and hepatic encephalopathy. In: Doyle D, Hanks D, Cherny N, Calman K (eds). Oxford Textbook of Palliative Medicine, 3rd edn. New York: Oxford University Press, 2005.
  2. National Institute for Clinical Excellence. Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. Cancer Service Guideline CSG4. London: NICE, 2004. https://www.nice.org.uk/guidance/csg4 (last accessed 27/08/17).

More about the authors
Clare Statham is a Specialist Registrar in Palliative Medicine, Southampton General Hospital, Southampton, UK.
Paul Perkins is a Consultant in Palliative Medicine, Gloucestershire Hospitals NHS Foundation Trust, Cheltenham, and Sue Ryder Leckhampton Court Hospice, Cheltenham, UK.

Read the full article in the European Journal of Palliative Care
This post relates to ‘How is ascites managed in UK hospices?’ by Clare Statham and Paul Perkins published in the September/October 2017 edition of the European Journal of Palliative Care (EJPC, (vol. 24 (4) (5). To select the September/October issue, choose ‘Browse the Archive’/2017/September October.

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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Literature and medicine – An interprofessional education project in palliative care

Continuing our series, The Arts in Palliative Care, where 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.

The Department of Palliative Medicine, University Hospital Bonn, Germany, invited medical and literature students to collaborate in an innovative storytelling project with patients. Michaela Hesse MSc explains.

Michaela Hesse

Literature can have an impact on a single reader but equally on the thinking of a whole generation – for example, Dostoevsky’s The Brothers Karamazov or Hesse´s Steppenwolf. Books often invite us on a journey to unknown realms. In the project at our palliative care unit, we put it the other way around. We wanted to open a new world by inviting students of comparative literature and linguistics and medical students to collaborate with each other and to interview a patient receiving palliative care. They were asked to write a story based on what the patient told them. This pilot study ran from October 2016 to June 2017.

We admitted 16 students from each discipline: comparative literature and medicine, and paired them up. The 16 pairs of students attended four workshops dealing with an introduction to palliative care, interview techniques, transcribing and writing. The workshops were facilitated by both medical and literature professors and gave insights into two intellectual domains: humanities and science – both operating with a very disparate set of technical terms and vocabulary. This was the first challenge for all of us. Each pair interviewed a patient who was receiving palliative care – either in the palliative care unit or from the home care team. We offered supervision and a workshop for reflection and evaluation of the project.

I want to share some quotes from the evaluation of the project:

  • Student: Most impressive to me was how open and honest patients were reflecting on their lives.”
  • Student: “I’ve gained the insight that every life in itself is important (also my own) and that behind every patient’s story is a unique, truly-lived life.”
  • Student: “I’ve learned that many things get a new significance with a life-limiting disease. I want to take this into my own life and start to appreciate the small things.”

Workshop Evaluation to ‘Emotions in the project’.

The 16 stories written by the students took a wide range of different approaches; some start like a novel, some are more like a biography. To give an idea here are some of the stories’ beginnings:

  • “I always wanted to be different. That sounds a little arrogant but that is why I always felt different and that is what mainly made up my life.”

  • “H., where are you hanging around? The horses do not feed themselves! H. stood in the haze of the shedrow [stables] and sighed thinking of the hard day’s work.”

  • “The telephone was ringing again and W. jerked. The short but piping tone made him jump. He put down the wrench and though the phone was not far away it seemed to be an endless time till he got there.”

  • “It is still one of the most beautiful places, said C. to her husband while sitting down at the table in the small restaurant.”

I don’t know how you feel about it, but I am curious and would love to read one or more of these stories. We wanted to ask patients for permission to publish their story, but sadly many of them died quite soon after the interview before they were able to grant permission. However, to us, it was a successful pilot study and we think it is worth doing it again. Patients enjoyed spending time with the students and with narrating their story. Students told us they learned a lot about themselves and were pleased to have this experience with the patients. We are still analysing the material and will publish the results.

Links

 

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Housing and palliative care – developing the connection

David Clark, Wellcome Trust Investigator, School of Interdisciplinary Studies, University of Glasgow, Scotland, UK, explains the background to a longer article published in the September/October issue of the European Journal of Palliative Care.

Professor David Clark

In ageing populations where the ‘dependency ratio’ puts increasing strain on our ability to meet the health and social care needs that exist in local communities, it is increasingly important that we look for novel approaches to the problems we face. One idea I have been exploring recently is to strengthen the links between housing issues, compassionate communities, and the provision of palliative care.

I started thinking about this a few years ago in relation to the place where I work. The Crichton Campus is on the edge of the town of Dumfries in rural South West Scotland. It is home to a number of academic, non-profit and business organisations. A landscaped site, with listed buildings, beautiful trees and open spaces, it began life as a psychiatric hospital in the first half of the nineteenth century. It has a hotel, conference and entertainment facilities, a pool and spa, a bistro, café and a non-denominational church. It has become a place of learning, teaching and enterprise as well as somewhere for leisure and relaxation, and it is seen as a key driver of the local economy. Could it now find an additional purpose as a place for older people to live, secure in the knowledge they might stay there, even if their care needs were to escalate?

Developing the ‘Care Campus’

The idea of a ‘Care Campus’ at the Crichton, where there is significant land to accommodate it, is focussed on adopting new approaches to ageing. It seeks to test out ways of providing housing for older people as well as social and community support with access to care – all combined with innovation in education, skills development and research. Part of its attraction is as a possible model for similar settings elsewhere.

Our evolving vision imagines a community of people accommodated on environmentally sensitive and sustainable lines where residents create an intentional community that is part of the life of the immediate Campus and the wider region. It will be a place providing for a full spectrum of needs – from completely independent ‘retirement’ living, through sheltered accommodation, to long-term and end-of-life care facilities. It will comprise housing to the highest design standards, developed in consultation with those who live there. It will involve residents in the co-production of wellbeing, educational and research activities along with academic partners, as well as to stimulate new knowledge, innovation and replicability, and create opportunities for cross-generational activity through student volunteering, internships, project work and high-quality employment for motivated and committed staff.

In the European Journal of Palliative Care article written with my colleague Dr Sandy Whitelaw, we have sketched the context and details of our proposition. Our next step is to test it out in full through a ‘proof of concept’ project that begins in early 2018. To do this, we are drawing on ideas and inspiration from around the world, and so we welcome contact from anyone engaged in similar pursuits. If you’d like to contribute ideas please contact me at the links below.

Read the full article in the European Journal of Palliative Care

This post relates to ‘Living well, dying well – the importance of housing’ by David Clark and Sandy Whitelaw that is published in the September/October 2017 edition of the European Journal of Palliative Care (EJPC, (vol. 24 (5), pp.199-202. (Follow the links to Browse the Archive/2017/September/October).

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.

Thanks to an agreement with Hayward Medical Communications, our article can now be read on open access at: http://eprints.gla.ac.uk/149370/7/149370.pdf

Links

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

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