Palliative care for babies (neonates): Developing services

Continuing our series to celebrate the International Year of the Nurse and Midwife 2020 and the benefits that nursing and midwifery bring to the health of the global population.

To mark this world first, the European Association for Palliative Care is delighted to publish a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce. Today, we hear from Alexandra Mancini (Smith), who is Pan London Lead Nurse for Neonatal Palliative Care at the Chelsea and Westminster NHS Foundation Trust, CW+ and the True Colours Trust, London, UK.

Alexandra Mancini (Smith).

Neonatal Palliative Care is gaining global recognition as an emerging specialty in its own right. I am fiercely proud to be a nurse; for the past 28 years I have been passionate about raising awareness, advocating choices in care for families, and improving how the neonatal world can join forces and collaborate with children’s palliative care teams. As nurses, we have a responsibility to share our experiences with each other and learn from the babies and the families we care for, consistently striving for high-quality care.

Twenty years ago, I looked after a baby called Bowen. Both he and his family inspired me to advance my vision for developing Neonatal Palliative Care, even though at the time we didn’t know it was called this. Bowen is the inspiration for the work that I do, including the publication of the first-ever textbook, Neonatal Palliative Care for Nursesedited and written by nurses. This was formally launched in February at the Child Bereavement UK 10thNeonatal Palliative and End-of-Life Care Conference in Leeds, UK.

Education, training and knowledge is essential for developing services; this book contributes towards educating nurses – both at the beginning of their careers and those who are more experienced, including other healthcare professionals.

Bowen’s mother said:

“The night I realised my beautiful baby wasn’t going to survive, all I wanted to do was take him home. I know it seems like a crazy and odd thing to want to do, but I wanted to bath and dress him and cuddle him without a million tubes attached. Luckily for me, I had the support of the neonatal nurses and hospital priest who enabled this to happen. My baby Bowen was a strong little boy with the most beautiful face and it fills my heart that he was the inspiration for this book. I hope it can help nurses and other healthcare professionals to help other families in my situation.”

Palliative care for babies can start antenatally before birth, at the time of delivery or on the neonatal unit. The book shares numerous examples of excellent palliative care in hospital. However, we also know from families that they wish to take their baby home with support from community services. It is vital that we work in partnership with families and colleagues to develop the best possible plan for individual families, sharing our expertise and resources to enable choice.

Neonatal Palliative Care is not an ‘added extra’; it should be embedded into routine neonatal care enabling families to share time and experiences together. Where new life and the uncertainty of death balance alongside each other, wherever possible, families need to be supported and enabled to just ‘be’ together to do the things which are important for them, wherever that may be. Essentially, this is good Family Centred Care.

In my role as Pan London Lead Nurse for Neonatal Palliative Care, I had the opportunity to develop an educational model of training, bringing together teams from the acute maternity and neonatal settings, community and children’s palliative care. (Nurse et al. in Neonatal Palliative Care for Nurses, Mancini et al 2020)  We provided free training programmes onsite at the 27 neonatal units across London, and at each of the six London children’s hospices. It has been a successful approach that nurtures inter- professional learning across organisational boundaries. It is imperative that we draw on colleagues’ expertise and not work in isolation, enabling us to ensure families receive all the information they require and are given realistic choices for the care of their baby.

Like-minded people, shared goals, robust working relationships and collaboration are essential to developing equitable Neonatal Palliative Care services for families.

If you’re coming to Palermo for the EAPC World Research Congress and would like to know more about our work, please come and meet me. I shall be presenting a poster and information about our book will be available on the EAPC stand, including vouchers enabling you to buy a copy from the Wisepress bookstand at the congress with a 20 per cent discount.

Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020. View last month’s post here and join us in March when Professor Catherine Walshe will be our guest contributor.

Links and Resources

 

 

 

Posted in ADVOCACY & POLICY, CHILDREN'S PALLIATIVE CARE, International Year of Nurse & Midwife 2020, Nursing | Leave a comment

Putting down the luggage of a lifetime: A French experience of hospital biography for patients in palliative care


Cliquez ici pour la version en français

Continuing our series on Spirituality and Palliative Care where we look at how people deal with crisis and suffering when confronted with life-threatening disease. In this post, Valéria Milewski, hospital biographer at Chartres General Hospital, France, explains that inviting patients to tell their story can help to give meaning, continuity and wholeness to their life.

Valéria Milewski.

For 12 years, patients in palliative care in France have been offered their biography, written and exquisitely bound, as a keepsake. This relatively novel practice in France was piloted in the Haematology and Oncology department of Louis Pasteur Hospital in Chartres (100 km to the south west of Paris); an experience which has now been reproduced in some 20 different establishments around the country.

The patient may receive a visit, either at home or in hospital, by a trained biographer (not a volunteer), who is an integral member of the palliative care team. The biographer interviews the patient, listens and transcribes, whilst the patient recounts stories from their life. These words are transformed into a storybook, which is offered to them, or any other chosen person, as a keepsake.

Why offer such a service and how does it fit into the patient’s care pathway?

Photograph: Ulrich Stefan.

The idea derives from the simple acknowledgement that we all have a story to tell. We may not all feel inclined to relay that story. However, we might feel the need to put down the luggage of a lifetime, before we die. Then, from this almost naïve intuition, came other realisations. This practice, which complements the care of an entire team, became almost (as the clinicians like to call it) a response to existential questions such as: Who am I? What has it all been about? Could we perhaps call it a new type of spiritual care?

Hospital biography – a new type of spiritual care?

Maybe the patients can answer that question. Claire, the young mother, physically and emotionally settled as she becomes aware she is leaving a precious memento to her two-year-old daughter, Adèle. And Jean-Louis, who after a suicide attempt and a request for euthanasia (outlawed in France), seizes the biography process as if it were an adventure book, and digs his heels in to the very end, telling the whole story and expressing his love in his own words. Or Sam, who passed away in peace before the very first interview, cradled guilelessly by the simple knowledge that he was going to be able to make his book.

We can imagine, and it has been demonstrated in an unpublished study, how an inner shift in the patient’s capacity to remain an impartial witness to what is happening to them might occur from leaving a trace of their own truth. As they review their life and achievements, putting back together and making sense of all that has fallen apart allows them to reinvent themselves. It becomes easier to face the evidence that eternity never existed after all. Yet, they can cherish the fact that “I can continue to live on through my book” (Marie-Laure). It may also make it easier for the recipients of the book to grieve. Likewise, it can inspire healthcare professionals to reassure patients that they are, above all, human beings with a unique and special story.

As Paul Ricœur wrote: “When you invite the other to tell their story, you invite them to give meaning, continuity and wholeness to their life”, which, in the end, is just a question of humanity…

Reference
Ricœur P. (1985), Temps et récits 3 : le temps raconté, Paris, Seuil.

More about the author
Alongside her work as ahospital biographer, Valéria Milewski is a PhD student in Human and Social Sciences (Linguistics) at University of Poitiers, and a lecturer.

Acknowledgement
With our grateful thanks to the translators in France, Karen Newby and Valérie Lesur.

Read more posts in the Spirituality and Palliative Care series on the EAPC blog. Look out next week for Dr Piret Paal on ‘The EAPC white paper on spiritual care education in palliative care’

 

Déposer les bagages d’une vie : expérience de la biographie hospitalière pour personnes en situation palliative

Suite de notre série sur la Spiritualité et les Soins Palliatifs consacrée à la manière dont les personnes confrontées à une maladie grave réagissent en situation de crise et face à la souffrance. Dans cet article, Valéria Milewski, biographe hospitalière au Centre Hospitalier de Chartres explique comment le fait d’inviter les patients à raconter leur histoire leur permet de donner du sens, de la cohérence et de l’unité à leur vie.

Valéria Milewski.

Depuis 12 ans, despersonnes en situation palliative reçoivent gracieusement leur biographie sous la forme d’un magnifique livre relié. Cette démarche pilote et novatrice s’expérimente à l’hôpital Louis Pasteur de Chartres (100 km au Sud-Ouest de Paris) dans le service d’oncologie-hématologie ainsi que dans près de 20 autres établissements sur le territoire français.

Il s’agit de proposer au patient de rencontrer – à son domicile ou lors d’une hospitalisation – un biographe formé (non bénévole), membre à part entière de l’équipe soignante. Il interview le patient, l’écoute et retranscrit ses mots tandis que le patient raconte des moments de son histoire pour recevoir ensuite gracieusement, lui-même ou un proche désigné, le livre de sa vie.

Pourquoi une telle proposition et où vient-elle s’inscrire dans le parcours de soin ?

Photograph: Ulrich Stefan.

L’idée est partie d’un constat simple : nous avons tous une histoire ; nous n’avons peut-être pas tous le besoin de transmettre mais peut-être avons-nous tous le besoin de déposer les « bagages d’une vie » avant de mourir ? Puis, de cette intuition presque naïve, d’autres champs se sont ouverts. Cette démarche, complémentaire aux soins de toute une équipe, devenait quasiment (comme aiment à le dire les médecins) une sorte de réponse à des questions existentielles : Qui suis-je ? Qu’ai-je fait de ma vie ? Ne serait-ce pas d’une certaine manière un nouveau soin dit spirituel ?

La biographie hospitalière – une nouvelle forme de soin spirituel ?

Peut-être que les patients pourraient répondre à cette question. En effet, que penser de cette jeune maman apaisée physiquement et émotionnellement qui peut laisser une trace de sa vie à sa petite Adèle âgée de 2 ans ? Et que dire de Jean-Louis qui après une tentative de suicide et une demande d’euthanasie (interdite en France) s’accaparera la démarche de la biographie comme une aventure et qui va s’accrocher jusqu’à la fin pour terminer son récit et dire des mots d’amour à sa façon ? Ou de ce monsieur qui mourra sereinement à l’idée de faire son livre alors même que les entretiens biographiques n’ont pas commencé ?

Nous pouvons imaginer, et une étude qualitative l’a démontré, que de laisser sa vérité, de faire le bilan, de mettre du sens là où tout était disloqué, de se réinventer (celui qui raconte n’est pas le même que celui qui a vécu), de conjurer le sort face à la perte du sentiment d’éternité « Grâce à mon livre, je serai toujours vivante (Marie-Laure) » permet d’être dans sa verticalité, dans un mouvement intérieur et aide les destinataires du livre à cheminer dans un deuil ainsi que les soignants à dire aux patients qu’ils sont avant tout des êtres vivants avec une histoire singulière et unique.

Comme l’a écrit Paul Ricœur « Inviter l’autre à faire son récit, c’est l’inviter à donner du sens, de la cohérence et de l’unité à sa vie », juste une question d’humanité…

Bibliographie
Ricœur P. (1985), Temps et récits 3 : le temps raconté, Paris, Seuil.

Présentation de l’auteur
Parallèlement à son travail de biographe hospitalière au Centre Hospitalier de Chartres, Valéria Milewski est Doctorante en Sciences Humaines et Sociales (Linguistique) à l’Université de Poitiers, Formatrice et Conférencière.

Remerciements
Nous adressons nos sincères remerciements aux traductrices en FranceKaren Newby and Valérie Lesur. 

Consultez d’autres billets de la série sur la Spiritualité et les Soins Palliatifs sur le blog de l’EAPC. La semaine prochaine, rendez-vous avec Dr Piret Paal sur ‘The EAPC white paper on spiritual care education in palliative care’.

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Making ‘invisible’ nursing work visible: The work of oncology nurses in introducing early palliative care

THIS MONTH’S EDITOR’S CHOICE FROM ‘PALLIATIVE MEDICINE’

Shan Mohammed RN, PhD is an Assistant Professor, Teaching Stream at Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, and a Fellow of the Centre for Critical Qualitative Health Research, Toronto, Canada. Here, Shan explains the background to his research study and longer article published in the February issue of  ‘Palliative Medicine’ which has been selected as ‘Editor’s Choice’ for February…

Most of us have been cared for by a nurse at some point in our lives – nurses are skilled at treating disease and providing physical care and emotional comfort when people are most vulnerable. In my 15 years as an oncology nurse, I have cared for many people with haematological diseases such as leukaemia and lymphoma; this work has been the most meaningful of my career. Despite this, I have sometimes found it difficult to describe what nursing work was to people who were not nurses. Since it is part of the everyday rhythm of care and personalised comfort, nursing work is often thought of as ‘invisible’ and behind the scenes. When I teach undergraduate students about this idea, I use the example of the nurse who advocates for a patient with unrelieved pain to get a pain medication increased – yet often the patient only acknowledges the physician who prescribes the medication.

Nurses make a major contribution in introducing palliative care to patients (and families) who are receiving medical treatment for their disease but have not been referred to palliative care. However, nursing work in this area has not been formally examined because nurses often do not have the formal authority to refer patients to palliative care. Yet, as a nurse, I was there with the patient ‘24/7,’ speaking to patients and families about their goals of care and witnessing the physical impact of advanced disease and cancer treatments. Nurses may be well positioned to have these challenging discussions about palliative care with patients and families, yet I wondered if this work was also invisible.

To examine the role of nurses in introducing palliative care (and to render this work visible), we interviewed registered nurses, advanced practice nurses, and nurse practitioners about the role they played in introducing palliative care in several ambulatory oncology clinics (Mohammed et al., 2020). The results of our study showed that nurses played an important role in finding a space to have these challenging conversations, building trust with patients and families, and providing education about the many benefits of palliative care for patients with advanced disease (Mohammed et al., 2020).

Palliative care is inherently interdisciplinary. Our study suggests that the introduction of palliative care is a team effort that also must involve nursing. Nurses have the knowledge and skill to direct this process and can anticipate which vulnerable patients might benefit most from access to this care. Nurses, in turn, need to be supported by being offered opportunities to have these close relationships with patients, receiving respect from the healthcare team, and being provided with education in palliative care.

The results of our study are exciting because they demonstrate that relational work is the foundation of both oncology nursing practice and palliative care. As a university professor, I know that teaching undergraduate students about relational care is difficult but essential. A recent US Gallup poll showed that nurses are perceived by the public as the most trusted profession.Yet, despite the trust we hold with patients, nurses are susceptible to downsizing and cutbacks because of cost saving measures. The findings from our study suggest that promoting patient access to palliative care might be hampered if nurses are not directly engaged in relational work with patients.

Nurses on the front lines need to recognize, value, and voice the unique knowledge they have of patients and families as they advocate with other members of the healthcare team for improved access to palliative care. At a broader professional level, nurse leaders and educators need to advocate for more comprehensive and ongoing training on how relational care is linked to introducing palliative care.

 

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article,“I’m going to push this door open. You can close it”: A qualitative study of the brokering work of oncology clinic nurses in introducing early palliative care by Mohammed, S., Savage, P., Kevork, N., Swami, N., Rodin, G., & Zimmermann, C. published in Palliative Medicine 202034 (2); pages: 209–218. https://doi.org/10.1177/0269216319883980 Article first published online: 29 October 2019. Issue published: 1 February 2020.

 

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

 

 

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Spirituality, poetry and palliative care

Continuing our new series on Spirituality and Palliative Care where we look at how people deal with crisis and suffering when confronted with life-threatening disease. Today, Dr Frank Brennan, a palliative care physician from Australia, explains the importance of language in our daily work and how, in times of sorrow, grief and perplexity, we reach beyond the everyday into poetry, music and art.


It is difficult/ to get the news from poems / yet men die miserably every day/ for lack/ of what is found there.

William Carlos Williams. Asphodel, That Greeny Flower.

 

Lunar Eclipse from ‘As Vast as the World’. Photograph © Elizabeth Josland – reproduced with kind permission.

Spirituality waves to us from all points of the human horizon. Broadly defined, spirituality includes all form of meaning and transcendence in human beings. Not all of us have a religion, but all of us have a spirituality. That spirituality reminds us that the tone and feel of our lives, the depth of our experiences, is as vital as the purely physical. What happens to us spiritually, marks us. It charges us as humans. And so, when it comes to the care of people with life-limiting illnesses, we need to be constantly aware of that horizon. Not just aware, but engaged.

So much of our work in palliative care is the use of language. There is a deep craft to this. Blandishments and clichés are seen through quickly. Sentiment, untethered to reality, will not help. Our words, our demeanour and, surprisingly to clinicians in other disciplines, our silence, all matter. They matter intensely. What is said and how it is said will be remembered long after the encounter. None of this is easy. It calls for a constant creativity. Bending and swaying to the demands of the moment.

Poetry, that other great discipline of language, mirrors our work. The searching in darkness for the truth, the balance of emphases, the unstated lying next to the stated, the soft phrase, the flash of wit and laughter. The reach into metaphor when we meet mystery. Our patients, their families and we, their clinicians, are repeatedly met by the inexpressible. All wrestle with it. It is not surprising then, that in times of sorrow, grief and perplexity we reach beyond the everyday into poetry, music and art.  We are spiritual beings.

Writing after the death of a loved one, the Scottish poet Norman MacCaig wrote Memorial.

Everywhere she dies. Everywhere I go she dies.

No sunrise, no city square, no lurking beautiful mountain

but has her death in it.

The silence of her dying sounds through the carousel of language… (1)

Yes the arousal of language. Between the words there is silence. And both language and silence matter.

Beyond mirroring palliative care, poetry may play an active, potentially therapeutic role in our work. In their narrative reviews Davies (2) and Gilmour and colleagues, (3) respectively, examined the multiple ways poetry may be used by patients, families and clinicians. Much of that therapeutic value lies in using a poetic voice to open up, reveal and expand the spirit of the person: grace, humour, enchantment and solace.

For some patients, religious faith holds them firm and brings great comfort.

Religions are poems. They concert

Our daylight and dreaming mind, our

Emotions, instinct, breath and native gesture. (4) 

In others, close to death, I have witnessed a yearning to be at home, to sit in their garden, to rest by a river, to be enchanted by music, to seek forgiveness, to watch their grand-children play. To hold all in balance: to see the world both afresh and for the last time.

Seasons of mists and mellow fruitfulness,

Close bosom-friend of the maturing sun;

Conspiring with him how to load and bless

With fruit the vines that round the thatch-eves run…

And still more, later flowers for the bees,

Until they think warm days will never cease… (5)

  1. MacCaig N. Memorial. IN : MacCaig N. The Many Days ; Selected Poems of Norman MacCaig, Polygon, 2011.
  2. Davies EA. Why we need more poetry in palliative care. BMJ Support Palliat Care 2018;8:266-270.
  3. Gilmour F, Riccobono R, Haraldsdottir E. The value of poetry therapy for people in palliative and end of life care. Prog Palliat Care 2020; 28(1):6-13.
  4. Murray L. Poetry and religion. In : Les Murray Collected Poems. North Ryde, Angus and Robertson, 1991.
  5. [Keats J. On Autumn. In : Keats J. Poems of John Keats. Penguin Classics, London, 2009,

More about the author…

Dr Frank Brennan is a palliative care physician based in Sydney, Australia. He wrote a series of narratives drawn from his work that were broadcast on ABC Radio National and collected in ‘Standing on the Platform’. Frank recently published a short commentary on ‘Poetry and Palliative Care’ in Progress in Palliative Care 2019; 28 (1):14-16. He has published a collection of essays, ‘As Vast as the World’, looking at the way great writers view illness, death, bereavement and palliative care.

To order a copy  of this collection and ‘Standing on the Platform’ please email Anne-Marie Traynor.  The proceeds of the sale of this book will go to charity.

Follow our series on Spirituality and Palliative Care on the EAPC blog. Next week, we hear from Valéria Milewski from France who talks about hospital biography.

 

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Building specialized palliative care for the Czech Republic: A 15-year leadership journey in a developing country

Dr Ladislav Kabelka, Home hospice care sv. Zdislavy Trebic, Vysocina region, Czech Republic, Czech Society for Palliative Medicine, explains the background to his longer article just published in ‘Journal of Palliative Medicine’. The  article seeks to describe the leadership steps of a systemic change in the Czech Republic with the objective of helping others make the same journey.

Dr Ladislav Kabelka.

The success of the development and establishment of specialized palliative care in the Czech Republic is due to many years of political, educational, and often voluntary work of many health professionals. I have been on this journey since 2003.

Since its creation, the Czech Republic has developed an advanced health system and social system. Life expectancy at birth has increased by an average of seven years in only 20 years. However, polymorbidity and multicausality have now became topics of concern. In some ways they are products of our success.

Inpatient hospice care, which has been developing in the Czech Republic since 1993, was (is) not the answer to this problem. Rather, approaches to ensure that the early introduction of palliative care in the course of serious illness care, personalized medicine and a multidisciplinary approach in the system are required. Focusing only on terminal illness care is insufficient. Beginning in 2005-2006, we have worked to create a system of education and clinical services in specialized palliative care in the health and social system.

In 2009, I was a founding member, and then served eight years as chairman, of the Czech Society for Palliative Medicine, Czech Medical Association of Jan Evangelista Purkyně (CSPM CLS JEP). In the 15 years, from 2005 to 2019 specialized palliative care has become an established part of Czech health care because of the work with professional societies, the public, government ministries, politics, regions of the country, and insurance companies.

I have recognized the importance of collaboration with colleagues. Not only physicians, or other healthcare professionals, but also politicians; for example, I believe that it is essential to demonstrate respect and dialogue. I can remember firmly disagreeing over some issues. I could advocate strongly, yet I needed to listen, receive feedback, and change my position. That ability opened doors. The path to success could be summarized as “not only divide and rule but also prepare-motivate-delegate-help-finish”. That path has lasted almost 10 years for me.

I can now see a number of up-and-coming, hopeful professionals around me who can develop palliative care effectively. They must travel a similar path; they will have doubts and make mistakes. I feel obliged to help in this without preventing them from learning their own lessons. After leaving the role of chairman of CSPM CLS JEP in spring 2017, it was not easy for me to see some of my mistakes repeated by others. Yet, I understand this is inevitable for professional growth.

And for those who of us who have already been on the long journey to establish palliative care, our role is now is to continue that journey with respect and support for our new colleagues.

Read the longer article in Journal of Palliative Medicine

This post relates to the longer article,Building Specialized Palliative Care for the Czech Republic: A Fifteen-Year Leadership Journey in a Developing Country by Ladislav Kabelka, published online ahead of print in Journal of Palliative Medicine, 23 January 2020; https://doi.org/10.1089/jpm.2019.0662

(EAPC members are eligible for a substantial discount on the personal online subscription to Journal of Palliative Medicine. More information here.)

More about the author

Dr Ladislav Kabelka, MD, PhD, worked for six years in a geriatric clinic, then for 12 years in the largest Czech hospice in Rajhrad near Brno, as a doctor, then head physician and director. He was the founder, and subsequently chairman of the Czech Society of Palliative Medicine (ČLS JEP) for eight years. Dr Kabelka has been involved in health policy for many years and is an initiator and guarantor of the concept of multi-level palliative care in regions, now mainly in the Vysočina region.

Links

Posted in EAPC-LINKED JOURNALS, Journal of Palliative Medicine, NATIONAL & INTERNATIONAL REPORTS | Tagged | Leave a comment

The spiritual power of music and sound


CLIQUEZ ICI POUR LIRE LA VERSION EN FRANÇAIS

Continuing our new series on Spiritual Care in Palliative Care.

Today, Alain Ducq, music and sound therapist attached to the Palliative Care Unit, Forcilles-Fondation Cognacq-Jay Hospital, France, explains how music and sound may help to alleviate spiritual suffering.

“Have you ever been so moved by a piece of music that you end up listening to it over and over?” Lise asked me when I was working one day on the palliative care unit. When she learned of her illness, she said she found herself listening incessantly to the Beatles’ number, Across the Universe. We sang it together, and as she smiled everything seemed to change in the world.

Thomas explained what music evoked for him:

“I’m going to die soon, I’m not really here anymore, and the same goes for music. It’s elsewhere. It takes you to another place…It’s an enigma!”

“In a few days from now, I’ll die, and this is how I’d like to feel when it happens, the way this music makes me feel now. I can’t describe it, precisely, I can’t think of the right words, it’s subtle,” is how Anne-Louise explained it to me.

Describing to me how the session had gone for her, Rosa told me that the black thoughts she’d been harbouring had disappeared:

“To start with, I was taken to a very deep place, passed by one instrument to another, until I wafted up like smoke rising. It’s how I imagine vanishing to be.” 

Yes, you’ve guessed it! I’m a music therapist. On first contact with the patient, when I enter their room, I tune myself to their rhythm. Like the sound box of an instrument, I try to reproduce what they’re expressing, and then amplify it to reveal their singularity.

Alain Ducq.

It’s when we listen to the unique arrangement I prepare for the patient, that the full potency of the three-cornered rapport between the patient, the music and the music therapist is realised. Listening can be an intensely profound experience and when it is so for the patient, it is so for me, too: “The illusory separation of myself from the other disappears. There is fusion and I enter infinite space and time.”

I’ve been a member of a palliative care team for some 18 months now. They are tremendous people, who inspire andmotivate me. I use music therapy as a form of spiritual care, even if it’s never formally voiced as such. Whilst music therapy is prescribed by the doctor, who gives relevant information. I don’t ever sit in on the handover, as I prefer to keep an open mind and avoid focusing on the patient’s physical condition.

Over the past year and a half, helped by the patients, my practice has evolved from pure music therapy to incorporate Sound Therapy. I use Himalayan singing bowls and a gong to give sound to the interior journey that leads to the deepest place of self. Submerged in sound, the path opens up onto a stellar inner experience.

The quality of the experience can be witnessed by intangibles such as loss of bodily sensation, time and space distortion, an impression of being transported or absent, and sharpened reminiscences… “I felt as though I no longer existed as a physical being. It was like being reborn, like hatching from larva into a dragonfly,” Daniel reported. Another indication of quality is the density of silence that hangs in the air at the end of a session, “like an invisible vibrating shroud surrounding us.”

Sessions of Sound Therapy, which are open to family members, can become a ritual of care. When Pierre’s wife realised he didn’t have much time left, she and their children requested Sound Therapy. As she curled up next to him on the bed and they took a last journey together, I felt a sense of breathtaking wonder. It was a sacred experience for me.

Music and sound have accompanied our species since the beginning of time, and continue right up to the present day, even in our secularised Western societies, where echoes of their ancient origins are still perceptible. Music therapy in this way has a role to play in helping to alleviate spiritual suffering by clearing a path towards the deepest human dimension. 

Note: For reasons of patient confidentiality, patients’ names have been changed in this article.

References and links

Follow our series on Spirituality and Palliative Care on the EAPC blog. Next week: Dr Frank Brennan from Australia.

Le pouvoir spirituel de la musique et des sons

Suite de notre nouvelle série sur l’accompagnement spirituel en soins palliatifs.

Aujourd’hui, Alain Ducq, musicothérapeute et sonothérapeute intervenant à l’unité de soins palliatifs del’hôpital Forcilles – Fondation Cognacq-Jay, France, explique comment la musique et les sons peuvent contribuer à soulager la souffrance spirituelle.

« Est-ce que vous n’avez pas été touché par une musique au point de l’écouter sans arrêt ? » me demande Lise, une patiente hospitalisée en unité de soins palliatifs. À l’annonce de sa maladie, elle a écouté en boucle « Across the universe » des Beatles. Nous la chantons ensemble, elle sourit, tout semble transformé.

Jean m’explique ce que la musique évoque pour lui : «  Vous voyez je vais bientôt mourir et je ne suis plus vraiment là, la musique aussi est ailleurs. On part loin dans un autre espace. Quel mystère ! ».

Anne-Louise confie : « dans quelques jours je vais mourir. Cette musique c’est exactement l’état d’esprit dans lequel je souhaiterais être à ce moment-là. Je n’ai pas de mots pour traduire toutes les subtilités… ».

Rosa décrit sa séance : « Je suis partie tout d’abord en profondeur en suivant les instruments qui jouaient, puis je me suis envolée vers le haut, comme de la fumée, comme si j’avais disparu ». Elle n’a plus ces idées noires qui l’envahissaient auparavant.

Vous l’avez deviné, je suis musicothérapeute. Quand j’entre dans la chambre d’un patient je m’accorde d’abord à son rythme. Comme la caisse de résonance d’un instrument, je cherche à résonner avec ce qu’il exprime et à l’amplifier afin que se révèle sa singularité.

Alain Ducq.

Lors de l’écoute du montage musical préparé spécialement pour lui, la triangulation patient-musique-musicothérapeute opère à pleine puissance. L’écoute peut être une expérience profonde. Lorsqu’elle l’est pour le patient, elle l’est également pour moi : « La limite illusoire entre moi et l’autre disparaît. Il y a fusion et j’entre dans un espace infini et sans temps ».

J’utilise la musicothérapie comme forme d’accompagnement spirituel, même si cela n’est jamais formalisé verbalement. Les médecins font des prescriptions pour la musicothérapie. Avant les séances, ils me donnent les indications nécessaires. Je ne participe pas aux transmissions car je veux garder un regard neuf et ne pas me focaliser sur l’état du corps. Depuis dix-huit mois maintenant, je fais partie intégrante d’une formidable équipe, qui m’encourage et m’inspire.

Les patients ont fait évoluer ma pratique. J’utilise maintenant des bols tibétains et un gong pour traduire de façon sonore le chemin intérieur qui mène au plus profond de soi. Ces bains de sons ouvrent la porte à d’importantes expériences intérieures.

Les indicateurs suivants permettent d’en évaluer la qualité : perte de sensation du corps, distorsion du temps et de l’espace, impression d’avoir été ailleurs ou absent, réminiscences…

« J’avais l’impression de ne plus exister physiquement. Pour moi c’était une renaissance, comme la transformation de l’étape d’un œuf à la libellule »dit DanielUn autre indicateur est l’épaisseur du silence en fin de séance « comme si une substance invisible vibrait dans l’air et nous englobait »

Les bains de sonssont ouverts aux aidants et peuvent devenir un rituel d’accompagnement. L’épouse de Pierre apprend que son mari vit ses derniers instants. Le père et les deux enfants entourent Pierre, ils souhaitent faire un bain de sons. Elle s’allonge aux côtés de son mari et ils partent tous ensemble pour un dernier voyage. Ce moment reste pour moi une expérience sacrée indicible.

La musique et les sons accompagnent notre espèce depuis la nuit des temps et même dans notre société occidentale sécularisée, des échos archaïques continuent de résonner depuis leurs origines lointaines. Aussi la musicothérapie a un rôle à jouer pour participer au recul de la souffrance spirituelle en réparant le pont coupé vers la dimension la plus profonde de l’Être.

Remarque : pour des raisons de confidentialité, les prénoms des patients ont été changés dans cet article.

Liens et ressources

Vous pouvez lire les billets publiés précédemment sur la musicothérapie dans la série ‘Arts and Palliative Care’ sur le blog de l’EAPC.

Suivez notre série sur ‘Sirituality and Palliative Care’ sur le blog de l’EAPC. La semaine prochaine: Dr Frank Brennan.

Posted in SPIRITUAL CARE | Tagged , , | Leave a comment

Living longer with incurable cancer

Dr Hilde Buiting has worked in the field of oncology and palliative care since 2005. In the past couple of years she has focused on patients living longer with the diagnosis of incurable cancer. In this blog post, she explains to what extent this patient group differs from the ‘mainstream’ palliative patient and the challenges that confront this specific group.

Dr Hilde Buiting.

Luckily, far more people are nowadays living longer with incurable cancer. Patients in the Netherlands with breast cancer, initially diagnosed with metastatic disease, now live five years or longer in 50 per cent of cases (Netherlands Cancer Registry).For other cancers, similar time trends are available. Even in cancers with a worse prognosis, such as lung cancer, possible life prolongation due to new treatment options has substantially increased.2

Dilemmas

Initially, I started this project on patients living longer with incurable cancer because of the taboo surrounding the explicit discussion of palliative care in the hospital. Interestingly, there were many patients with metastatic disease, and healthcare professionals practised many elements of palliative care. Our recent study showed that these patients did not suffer much from receiving anti-cancer treatment (which is less often considered burdensome compared to 10-15 years ago). At the same time, however, those patients may experience dilemmas patients in the terminal phase of their disease, or patients initially being cured, are not confronted with.3  Since we started the project we have discussed this topic with many medical professionals in the field and this disease phase is nowadays getting more and more attention.

During the time period of the project a switch in mindset seemed to have happened among primary care physicians due to increased awareness about this topic. What I find particularly challenging is that living longer with incurable cancer also seems to include considering care options other than the provision of (early) palliative care only, e.g. survivorship care. This is particularly relevant in the primary care setting.

As opposed to palliative care, survivorship care focuses on quality of life as well as survival and includes interventions aimed at healthy living, such as weight control and cognitive behaviour therapy. Although survivorship care is getting more attention in cancer research, the studies that focus on patients with metastatic cancer is scarce.4

Switch in mindset

The lack of studies is understandable. In providing survivorship care, a different mindset seems to be required as compared to the provision of palliative care. What I’ve been noticing so far is that this group of patients can be especially difficult for palliative care professionals themselves. The palliative care approach, in which advance care planning,spiritual issuesand preparation for the approaching death are of paramount importance, seems to be somewhat less important in this patient group. In having ‘chronic’ incurable cancer, ‘keep on going’ seems the most important intrinsic drive.

I am fascinated about this group of patients because they (also) experience many positive things while being ill. They, for instance, experience growth in various aspects. Moreover, the dilemmas these patients face are new for healthcare professionals as well. I hope this blog post will also help in discussing this research topic more openly in an international context.

References

  1. Netherlands Comprehensive Cancer Organisation (IKNL). Accessed from the internet: www.iknl.nl
  2. Temel JS, Gainor JF, Sullivan RJ, et al. Keeping Expectations in Check With Immune Checkpoint Inhibitors. Journal of Clinical Oncology:2018:Jco2017762146.
  3. Buiting HM, van Ark MAC, Dethmers O, et al. Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands. BMJ open 2019;9(3):e024450.
  4. Starreveld DEJ, Daniels LA, Valdimarsdottir HB, et al. Light therapy as a treatment of cancer-related fatigue in (non-)Hodgkin lymphoma survivors (SPARKLE trial): study protocol of a multicenter randomized controlled trial. BMC Cancer 2018;18(1):880.
  5. Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage 2017;53(5):821-32.e1.
  6. Best M, Butow P, Olver I. Palliative care specialists’ beliefs about spiritual care. Supportive care in cancer:2016;24(8):3295-306. doi: 10.1007/s00520-016-3135-0.
  7. Clayton JM, Butow PN, Arnold RM, et al. Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 2005;13(8):589-99.

Links

 

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