The Suffering Caregiver


Benjamin Gagnon Chainey

‘Is the experience of pain preferable to the anihilation of experience?[1]

Hervé Guibert, Le mausolée des amants

The question posed by Hervé Guibert, a French writer who died in 1991, while he was HIV-positive at the apex of the Western AIDS epidemic, resounds from the darkest areas of his terminal phase. In the last pages of his personal diary, Guibert asks whether pain is the touchstone of the experience of one’s end of life, the key to a death that would be fully lived. Guibert’s question reaches to the heart of contemporary debates over physician-assisted dying, which consider the patient’s experience of ‘intolerable and irreversible pain’ – physical or psychological – the ticket to this ‘ultimate care’: that of a ‘chosen and dignified death.’

Numerous challenges bar the way towards a clear delineation of what an ‘intolerable and irreversible pain’ may be, a definition that would univocally lead to the easement of death. Univocity matters here, since a mistaken assessment would be equally irreversible. Univocity despite the subjective – indeed intersubjective – character of the evaluation of pain, and of the apprehension of death. As medical and legal discourse dominates physician-assisted death, it appears that a large proportion of physician-caregivers working in end-of-life care find the task troublesome. Dutch sociologist Roeline Pasman[1] wrote in a paper entitled ‘What Characterizes Complex Euthanasia Consultations?’[2] that evaluating end-of-life suffering is at times so difficult that physician-caregivers cannot imagine – the word is wisely chosen – complex and ‘unbearable suffering.’ Instead of demanding that patients clearly express their pain within the bounds of medical and legal discourse for physicians to assess it, could we conceive of modes of experiencing pain that would break free from the confines of such limitative forms of expression? Could a more attentive ear to Guibert’s words provide a path towards a more resolutely empathetic experience? An experience that, beyond the sought-after alleviation, could reveal the meaningful facet of the pain endured by both patient and the caregiver, in their end-of-life relationship?

If all acts of care are, in their own way, relational, and if death may be an ‘appropriate treatment’ against pain, a dialogue must be established with them – death and pain – to avoid isolating them, along with those who fight against them, namely patients and physicians. Such a dialogue must overcome the difficulty we feel in hearing and looking at death and pain, not to mention accompanying and supporting them, so that we may genuinely engage in an effort to understand the way they find expression. We may then gain an enhanced humanity in the care relation. In that sense, in the very year of Hervé Guibert’s death, 1991, American physician David J. Rothman stated in his bioethics essay Strangers at the Bedside: A History of How Law and Bioehtics Transformed Medical Decision Making:

To deal on a daily basis with injury, pain, disfigurement, and death is to be set apart from others. Modern society has constructed exceptionally sturdy boundaries around illness, confining it to the hospital and making it the nearly exclusive preserve of the medical profession. […] To be sure, this process is not new, but it has surely accelerated over the last several decades. […] The isolation of disease is certainly not complete, however.[3]

It is precisely in the effort to decompartmentalize pain and death, to offer a counterpoint to them, that lies the artistic work of Hervé Guibert. Ever since his first published text in 1977, and well before he entered the terminal phase of AIDS at the beginning of the 1990s, Guibert was fully exploring the experience of pain. He was responding to a need to see and hear his body’s suffering: death at work within him – and in each one of us – to better understand it, unmask it:

My body is a laboratory that I offer as an exhibition, the sole actor, the sole instrument of my organic desires. Partitions on a fabric of flesh, of insanity, of pain. Observe how it operates, harvest its performance. […] At the conclusion of this series of expressions, the ultimate travesty, the ultimate make-up, death. We gag it, we censor it, we attempt to drown it in bleach, to suffocate it in ice. For my part, I want to let it rise its powerful voice and sing, a diva, throughout my body. She will be my only partner, and I will be her interpreter.[4]

Guibert does not pursue this ‘auto-corpographic’ work, with its fantastic overtones, with the intent to close it up around his own suffering, in the image of Rothman’s modern hospital. At the opposite of an egoistic or narcissistic approach often associated with self-representation, Guibert’s work should be read as a gift of the self to the Other. A gift that makes sense when it is understood through the dual prism of empathy and, as a counterpoint to the rigorous medical and legal discourse, of sensitivity.

Today I would like to work on a dissection table. It is my soul that I dissect at each new day of toil […] On the table, I perform all kinds of examinations, I take section snapshots, I conduct magnetic resonance investigations, endoscopies, radiographs, and scans, and I deliver the images for you to decipher on the luminous plate of your sensitivity.[5]

However, following French philosopher Emmanuel Levinas, ‘exposed, open like a city facing the approaching enemy, sensitivity, beneath any will, any act, any declaration, any stance – is vulnerability itself.’[6] This means that when the caregiver exposes their own sensitivity in an attempt to discern and to alleviate the suffering of their dying patient, at the limits of vulnerability, they put themselves at risk with respect to that same vulnerability. For if ‘suffering through the other is having charge of him, supporting him, being in his place, consuming oneself through him’, and that ‘all love and all hate of the other, as a thoughtful attitude, suppose a prior vulnerability,’[7] the place of sensitivity as part of end-of-life care becomes somewhat of a tightrope walker’s art: a risky performance that would at once follow the requirements of medical-legal objectivity, and give way to the subjective vulnerability that is the foundation for the expression and reception of the Other’s suffering. A complex task, at the meeting point of medicine, law, and the humanities, but that is unescapable, according to Levinas:

It is this attention to the suffering of the other that, through the cruelties of our century (despite these cruelties, because of these cruelties) can be affirmed as the very nexus of human subjectivity, to the point of being raised to the level of supreme ethical principle – the only one it is impossible to question – shaping the hopes and commanding the practical discipline of vast human groups.[8]

Greatness and courage, undoubtedly, because accompanying someone through death is an undeniable source of anguish. As he observed caregivers at his bedside, Guibert wrote in his hospital diary: ‘Sometimes, they just don’t know anymore, they feel their way, they sweat buckets. They’re afraid.’[9] The fear of being mistaken, not knowing… The fear of saying or doing wrong… The fear of being accused… The fear of being found guilty… It goes without saying that the words and actions of caregivers that accompany the dying – both professionals and family members – are loaded with meaning and the burden of consequence. The ethical responsibility that befalls upon them is a burden they must carry, but that they do not have to carry alone. Not unlike the pain they help alleviate, the caregivers toiling the space-time of end-of-life, facing death on a daily basis, should also be accompanied, equipped to handle the injunction of empathy that is thrust on them. An intersubjective and, indeed, interdisciplinary equipment, to help them to imagine the suffering of the Other, following Pasman; to decompartmentalize, following Rothman; or better yet, to better suffer through the Other, following Levinas.

It is in the eye of this ethical knot, that of the end-of-life, that art and literature must add their voice to the chorus, to contribute to the dying’s vigil, and to the caregiver’s equipment. More than a scale to evaluate pain, than a dose of morphine, or than a committee’s approval, it is crucial not to dehumanize the suffering of the Other: even when it becomes difficult to bear with one’s own vulnerability and sensitivity, primarily for the dying, but also for those who witness it closely. During one of his last nights at the hospital, Guibert wrote:

I get up to jot down some phrases that swim through my head, or else they’ll haunt me until tomorrow. The cries of the suffering which come from nearby rooms are almost more heart-wrenching than one’s own suffering.[10]

In the hospital environment where Guibert finds himself in his last moments, and echoing today’s hospital, pain and suffering are omnipresent, testing the limits of the bearable and of despair, and do not affect only the suffering patient, but also the practitioner. On the verge of death, while AIDS is gradually making him blind, realizing his deepest fear of sightlessness, Guibert reflects on his pain, embraces it and adds:

I’m not saying I’d like to become blind, there are situations so desperate that one tries to take advantage of them, but it’s something I’m not familiar with, and I always love to slip into unknown situations, no matter the consequences.[11]

What Guibert affirms, as he is about to lose his vision, should not be reduced to the dying man’s despair as he finally accepts his fate, or to the macabre fantasy of an ‘artist of the self.’ Hervé Guibert is perhaps stating here the desire of the writer not only to write about suffering, but also to experience it. Guibert’s posture is an invitation to dare to conceive of the unconceivable, even when it is painful, and to rehabilitate sensitivity, even when it makes us vulnerable. As a possible response to the essay by Québec physician Alain Vadeboncœur[12] where the author criticizes actors for not being able to play dead, Guibert would perhaps ask: ‘Doctors and jurists, do they know how to die?’ For, if the goal of physician-assisted dying is to die better, then is there not a need to learn to die? No discourse and no actor can pretend, by themselves, to teach an experience so intricate as pain and death. Rather, there is a need to join together the voices that resonate at the end of life, even those that may be disturbing.

‘Listen to the disturbing, and take it into account,’ asked American psychiatrist Linda Ganzini during her keynote lecture at the Second International Conference on End of Life Law, Ethics, Policy and Practice, held in Halifax, Nova Scotia, in September 2017.  And if Guibert is right in stating, between parentheses, in his personal diary ‘(One of the role of literature is to teach death),’[13] then it is our job, as (medical) literature and humanities scholars, to break through the partitions that keep death neatly within the bounds of the hospital, and to take out the parentheses that keep literature and the humanities apart from other forms of discourse. It is only at that price, and at that risk, that we may better humanize the end of life.



[1] Roeline Pasman, associate professor in End-of-Life Studies at the VU Medical Center, EMGO+ Institute for Health and Care Research, Department of Public and Occupational Health, Amsterdam, Netherlands.

[2] Experiences of SCEN (Support and Consultation on Euthanasia in the Netherlands) Physicians. Presented at the Second International Conference on End of Life, Law, Ethics, Policy, and Practice, September 14, 2017, Halifax, Nova Scotia.

[3] ROTHMAN, David J., Strangers at the Bedside: A History of How Law and Bioehtics Transformed Medical Decision Making, New York, Basic Books, 1991, p. 135.

[4] GUIBERT, Hervé, La mort propagande, Paris, Gallimard, 2009, pp. 8-9. I translate.

[5] GUIBERT, Hervé, Le protocole compassionnel, Paris, Gallimard, 1991, p. 94. I translate.

[6] LEVINAS, Emmanuel, Humanisme de l’autre homme, Paris, Le Livre de poche – Biblio essais, 1972, p. 104. My translation.

[7] Ibid., p. 105. My translation.

[8] LEVINAS, Emmanuel, Entre nous: Thinking-of-the-other (Michael B. Smith and Barbara Harshav, trans.), London, New York, NY: Continuum, 2006, p. 81.

[9] GUIBERT, Hervé, Cytomegalovirus, A Hospitalization Diary (Clara Orban, trans.), New York, NY: Fordham University Press, 2016, p. 59.

[10] Ibid., p. 33

[11] Ibid., p. 46.

[12] VADEBONCŒUR, Alain. Les acteurs ne savent pas mourir, Montréal, Lux, 2014.

[13] GUIBERT, Hervé, La Mausolée des amants, Journal 1976-1991, Paris, Gallimard, 2001, p. 559. My translation.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Up ↑

%d bloggers like this: