New Edited Collection - The Patient's Wish to Die

The Patient’s Wish to Die - Research, Ethics, and Palliative Care (2015), Edited by Christoph Rehmann-Sutter, Heike Gudat and Kathrin Ohnsorge. Oxford: Oxford University Press.

This new edited collection is on Google books, but I haven't received a real copy yet. It is due to arrive in July and includes contributions from palliative care professionals and end of life care researchers. The book is divided into three broad sections on research, ethics and practice. I have a chapter in the book on 'Illness narratives, meaning making, and epistemic injustice in research at the end of life'. 

Here is a short excerpt from the Introduction. Both the Introduction and my chapter are available in full on Google books. You can find more details about the book on the OUP website.

Introduction

In many countries there has been a public debate over several decades about the appropriate regulation of hastening death and other aspects of end-of-life care. The debates, however, often run in ideologically constrained circles and are not sensitive to the finer tuning of both the clinical reality and the subjective experiences and moral understandings of patients themselves as their lives draw to a close. This book brings together different research approaches to examine these phenomena, and makes them accessible to a broader audience than just the small, but international, ‘wish to die’ research community. Empirical research has been carried out for more than a decade on the phenomena of wishes to die and desires for a hastened death at the end of life. This book reflects the best currently available knowledge and research methodologies about patients’ wishes at the end of life, together with a series of ethical views and a discussion of the clinical implications for palliative care.

When somebody says, ‘I really want to die’, ‘I would prefer to be dead soon’, ‘Please,
let me die more quickly’—or similar things—the underlying wish expressed may be
very complex. In order to respond competently and compassionately, the healthcare
professional needs to grasp the dimensions immanent in wishes to die, both in general
and in regard to the concrete individually expressed concerns of the particular patient.
This requires deeper knowledge of the structure, the meanings, and the dynamics of
this phenomenon and of the interactions in which it is embedded. However, talking
with patients in depth about wish to die statements is still seen as challenging, and is
therefore often avoided by healthcare professionals (see Kohlwes et al. 2001). A superficial
understanding of the statement risks taking it at face value (just fulfilling what is
requested in the name of a superficially understood ‘patient autonomy’) without recognizing the patient fully as the person she or he is, who may be experiencing deeply
ambivalent feelings at the end of life and who might express this as one element within
a larger dialogue with healthcare professionals and relatives—and also in an inner dialogue
with her- or himself. Another risk would be to ‘medicalize’ the expressed wish
to die, i.e. to treat it as a sign or symptom of depression or anxiety in every single case
which automatically demands treatment. Both reactions can lead to suboptimal palliative
care, to shortcomings in the caring relationship, and, if things develop unhappily,
even to an unnecessary abandonment of the patient.

The intended audience of this book is primarily healthcare practitioners involved
in end-of-life care but also interdisciplinary scholars interested in palliative care and
medical ethics, including its specific challenges in the last phases of life. The book attempts to contribute in an open manner to the medical, ethical, and public debates on
this topic. It aims to be sensitive to the spiritual and existential dimensions of dying and
to the different cultural views that provide meaning to the individual.

We have invited some of the best-known palliative care research specialists and ethics
scholars from different countries to reflect on this sensitive issue based on an empirically
informed and patient-centred view. Many, but not all, of the authors discuss the
topic from a hermeneutical, phenomenological, or narrative perspective. The collection
includes palliative care practitioners and end-of-life scholars from countries where
different forms of assisted dying practices (such as assisted suicide or euthanasia) are
legalized and from other countries where they are not.

What is music thanatology?

I have only just come across the podcast of a talk by Gerry Prince, a music therapist. This is disconcerting because Gerry’s presentation was recorded at my book launch for Death and the Migrant in November 2013. I have often thought about this mesmerising presentation because of my interest in sonic selfhood and because it makes an important contribution to the discipline of ‘music thanatology’.

What is music thanatology?

Cluny Abbey, Creative Commons

The roots of the practice are claimed to lie in tenth century Europe, when William the Pious, Duke of Aquitaine, gave a fertile plot of land in Cluny to Berno, a Benedictine monk. Going against convention at the time, William stipulated that the monastery - in the Burgundy region of France - should be free to pursue its spiritual life without interference from his family or local bishops, being accountable only to Pope Sergius III. The philosophy and devotional practices nurtured at Cluny were known for four qualities: the recognition the monks gave to the human need for beauty, their skills in conflict resolution between feudal groups, the development of traditions for commemorating the dead and monastic medicine.

In the Cluniac infirmary, manuscripts or customary record that dying people were tended to body and soul with music and song. The acoustic anointing of dying people with live music – usually singing and harp playing – has been described by Therese Schroeder-Sheker, as weaving ‘tonal substance responsorially over, around, and above the physical body of the patient, from head to toe’ (p.90).

Schroeder-Sheker is a musician, clinician and founder of the School of Music Thanatology at St Patrick's Hospital in Montana. A sub-specialty of North American palliative medicine, music thanatology sees itself as providing ‘physical and spiritual care of the dying with prescriptive music.’ The Chalice of Repose Project, explains the aims of this sublime care,

…music-thanatologists work with those who are actively dying (24-48 hours) or have received a terminal diagnosis, usually approximating six months. The goal of music thanatology and prescriptive music deliveries is at least four-fold: relief of acute and chronic physiological pain and/or spiritual or interior suffering; the creation of the supportive conditions which can facilitate reconciliation and meaning in the face of mortality and suffering; a blessed or peaceful or conscious death which is returned back into the fullness of life and the whole human life cycle; the transformation of the personal, familial, medical, cultural, and community experiences of death.

Schroeder-Sheker says that the inspiration for her musical palliative care came from a man she had met in the 1970s. He was dying from emphysema and very much alone in a care home. Schroeder-Sheker remembers him in physical and social pain, unable to swallow, ‘sometimes vicious, often brittle and selfish’ (p.87). Engulfed by a thick rasping distress when she entered his room towards in the last hours of his life, Schroeder-Sheker climbed into the man’s bed and propped herself up behind him midwife-like, relieving some of his weight. She began to sing and sway their bodies in rhythm. ‘I made my way through the entire Mass of Angels, the Adora te devote of Thomas Aquinas, the Ubi caritas, the Salve Regina, the Mass of the Blessed Virgin Mary’, she recalls.

For all I knew, he could have been Eastern Orthodox or Jewish, because all the residents were Russian émigrés, but I never knew the details of his life. The chants seemed to bring him balance, dissolving fears and compensating for those issues still full of sting. How could they do anything less? These chants are the language of love. The repertoire had become the chalice that held him up into true repose. Long after his heart ceased to beat, I was allowed to hold him. (p.87-8)

There is an element of mystery to consciousness, feeling and the alleviation of suffering at the end of a life. But the play of unseen waves and vibrations across skin, bone, hair and muscle that is hearing is believed to be the last flickering remnant of our sensory connection to the world before we die.

Today, music therapists can be found in hospices and in palliative care teams (depending on where you live – unfortunately specialist palliative care is still a postcode lottery). You are more likely to find drums, guitars and tambourines rather than harps; perhaps reggae, pop and folk songs, alongside hymns.

While Schroeder-Sheker’s original account of the Christian hymns she sang for the Russian (possibly Jewish) man, acknowledges the cultural and religious significance of deathbed music, she skips over her cultural commandeering of his last moments of life. It all feels a bit ethically and professionally iffy. We are also left with many questions about Schroeder-Sheker’s claims. Is the content of the music itself insignificant? Was the man’s apparent repose a result of the music, the comfort of close contact with another human being, or of being held in a position that helped him to breathe more easily? Perhaps all three?

I am being vague here because there are several theories about how music and its different qualities (vibration, rhythm, pitch, force, motor effects, familiarity) can affect our well-being and relieve pain. As far as pain goes, there are two broad explanations. One is that music can distract our attention away from pain. The other claim is that music stimulates the release of opioids, the body’s natural analgesia.

Still, this is getting ahead of myself. If my reading of the science literature is correct, there is so much that we don’t know about the deep chemical structures that underlie hearing. The one thing that we are more certain about is that at the molecular level, hearing and touch are both characterised by ‘a single physical parameter – force’ (p.647).  In other words, to hear is to be touched. And to be touched whether we like it or not.

This vulnerability to acoustic ‘touch’ reminds me of what the feminist philosopher and phenomenologist, Rosalyn Diprose, calls ‘corporeal generosity’. ‘It is because bodies are opened onto others, rather than being distinct,’ Diprose argues, ‘that we can act, be affected’ (p. 69). Not surprisingly, Diprose’s work has been concerned with the ethical dimensions of these generous and unruly exchanges between bodies.

For me, Gerry Prince’s presentation of his music thanatology is a spellbinding demonstration of corporeal generosity and its cultural inflections in care. Gerry played us three recordings that he had made in a care home with an African Caribbean woman with dementia. Again, as in Schroeder-Sheker’s story, there is the suggestion of the woman’s social pain in her isolation. When Gerry first met her, she was "severely depressed" and had lost the ability to speak and communicate. She could be aggressive and was sometimes difficult to care for.

Image of Gerry Prince at my Book Launch by Marina Silva

As his work with her developed over weeks and months, we heard the woman begin to join Gerry in singing, in a sort of call and response or antiphonal style. The first two pieces that Gerry serenaded her with were the Scottish folk song My Bonnie Lies Over the Ocean and later Nobody Loves Me. “So, she was singing”, Gerry said, “We couldn’t have any conversation, but she was kind of able to claw back a cognitive sense of herself that she could put into a song structure.” For Gerry, the recording of Nobody Loves Me marked a milestone in their relationship, "She extemporised that song. She made it up and there’s really a high degree of musical awareness and ability and I challenge anybody in this room to do what she does, on the spot.”

The last recording that Gerry played for us, was made two weeks before his last session with the woman. In this recording, we heard her babbling, “with words taking her from isolation into relationship”. For Gerry, “Songs are narratives. They are musical diaries. They tell the stories of our lives”. With hindsight Gerry felt that Nobody Loves Me could be an immigrant’s narrative. It had made him think about his father’s generation, the Windrush generation, to which the woman also belonged. The final extract was Gerry’s rendition of the Jamaican folk song ‘Linstead Market’. It’s about home Gerry told us, “Everyone wants to die at home”.

The monks at Cluny felt that the architectural organisation and receiving of sound in a space could allow for epiphany - an opening out to the richness of life and what lies beyond it. This belief is not dissimilar to the philosopher Gilles Deleuze's ideas, which render music as the spiritualisation of the body,

When music sets up its sonorous systems and its polyvalent organ, the ear, it addresses itself to something very different from the material reality of bodies. It gives a disembodied and dematerialised body to the most spiritual of entities. (p.47)

The choir space at Cluny is said to embody the monks’ belief in the spiritual and healing properties of music. The monastery is renowned for its intricately carved eight capitals - the top aspects of the stone columns - that surrounded it. The space was called the deambulatorium angelorum - the walkway of angels. I am thankful for those like Gerry Prince who help us to imagine and hear this walkway - and its angels - differently.