Johanne de Montigny gave a conference on the occasion of the 10th Summer institute at the Centre de recherche et d'intervention sur le suicide et l'euthanasie (CRISE). Mrs. de Montigny is a psychologist, in the palliative care unit at McGill University's Health Center, the Montreal General hospital and in a private practice.
Conference text
Montreal, May 1st 2013
I feel privileged to be among you today and I would like to thank professors Brian Mishara and Mélanie Vachon who extended this warm invitation to me. I would also like to thank all the people who are in charge of this activity whose subject concerns us so much.
My intention today is to speak about the experiences I've garnered in more than 25 years of accompaniment and of psychological treatment among the critically ill and with grieving families. It's a memorable experience that changed my own relationship with life, dying, love, suffering and grief.
Other experiences have nourished my reflection to this day, personal experiences prior to my professional dedication but also, a discovery of writings that enlargened my horizon and nuanced the colours of my backdrop. What's more, the interdisciplinary team that I regularly rub shoulders with inspires me to live my life with zest, to heal and to protect the dignity of the critically ill. My colleagues are wonderful people with whom I share strong moments in life.
I will give you a few examples, but very few, and only for the benfit of our reflection, from my story of survival and what was the trigger of a personal transformation and the subsequent professional path it led to. I'm only going back in time in order to best portray the way I now regard medicine, the multidisciplinary healers, the contribution of volunteers and what the sick really mean in the eyes of Quebec society.
I will also speak about chapter 29 in my most recent book intitled Quand l’épreuve devient vie (When trials become life) in order to support a writen reflection that otherwise would have remained fixed on paper. In other words, I am presenting myself with a speech that is both well-anchored and continually in movement. Most probably because the subject of death inspires in me the death of subjects that even in diminishing life, are dignified.
The citation from Hélène Cixous in La dernière phrase (The last phrase) also lights up my thoughts : « At the moment when he is meant to die, what is given to him, is life itself and what is taken away is the semblance of life he found so much later, but that was so alive...He lives a life and more: A life and its end. Then comes grace, this grace, it is nothing. It's only the chance to change everything. Because it only comes when this life that is so short comes to its end. » (Cixous, 1982).
To the urgency of living, we can add today the urgency of leaving a world that has trouble tolerating the unknown, the powerlessness, and the slowness of time. We have progressed from the fear of change to the obsession with change. The confusion between the evolution of a people and its hasty or precipitated decisions sometimes explains the reactions and actions that eclipse the reflection. That is the danger with the phenomena of euthanasia. We are moving forward in a world for whom sickness, loss of autonomy, aging, healthy dependance and the search of the senses constitute states, stages or values that today interfere with the quest for power, the performance cult and the new penchant for the instantaneous. Nicole Aubert (2010), sociologist and psychologist, traces out for us the portrait of the rushing man: «Galvanised by urgency, sometimes almost shot-up on this new kind of drug, certain people need this rythm to feel that they are really intensely alive. Like the heros of a contemporary time, they feel drunk with the exploits they've accomplished in so little time and triumph over death by triumphing over time. »
I've been working in McGill University Health Centre's palliative care unit since 1988. Currently at the Montreal General hospital, fifteen beds are attributed to terminally ill people with an average of nineteen days of intense life for the patient, significant for the entourage and productive for the healthcare workers. I value my luck of working in this particular place where life and death are intimately linked, because this proximity permits me to evaluate the complexity and strength of the human being. A dying person can be both sad and serene; a family, both tearful and functional, a healthcare worker, both strongly touched by a person or the situation without being devastated. In other words, through the suffering that is linked with the process of death and loss, sequences of happiness, reconciliation, hope and personal transformation are lived out by the person in end-of-life, sometimes for a family member and always for the healthcare worker. The welcoming area is particular, I can describe it as being calm and sad, warm and living, safe and comforting. My work allows me to talk about death through life and to see, at the approach of death, the emergence of a peaceful zone. The months and the years that have preceded the ending seem to have been much more turbulent, for the sick and for his family. In other words, the last moments of death are for the most part less trying or chaotic than the many paths that led them there.
Since the particular consultations and public auditions that have taken place among Quebecers on the question of « the right to die with dignity » and the publication of the resulting special commissions report, my preoccupation is great concerning the maintenance of a dignified end of life, as it now exists and has existed in palliative care for the past forty years. The interdisciplinary teams occupy such an important place in the matter of treatment and relief of the sick's physical, psychological and spiritual pain.The importance of teamwork is not addressed much in the commission's report when their contribution is essential in order to insure good practices. Our expertise also addresses afflicted families in order to support and accompany them in their grief. End of life treatment is therefore at the very heart of our preoccupations.
As mentioned in the report Dying with dignity (2012) « Throughout the last century, the progress of science have been such that death has become for many, a failure to avoid, an enemy to control. Society even cutivates a denial for it. However, during the 70s, the advent of palliative care introduced a change in this way of thinking, death subsequently was considered, according to this approach, like a natural part of life. » In opposition, euthanasia - here called « medical aid in dying » - is a procedure that intentionally and instantaneously provokes death. « Must the act of provoking death become the response to the suffering of the critically ill? » That is the question that doctor Serge Daneault poses to his colleague, doctor Marcel Boisvert, in an exchange of letters on their experiences and respective positions. (Boisvert; Daneault, 2010).
Faced with the perspective of dying and with the hope of surviving that often cohabitate the same person, only one paradox remains irreconcilable : Palliative care and euthanasia cannot subsist together in the same location. Doctor Manuel Borod, director of palliative care at McGill University's Health Centre, well specified this in a letter to the Montreal Gazette on January 21st 2013 :
« The law proposed by the Quebec government aims for the improvement and broadening of the role of palliative care. What will result from that is the contrary if ever palliative care and euthanasia must coexist under the same roof.» Euthanasia is not a treatment and could never be dispensed as part of a palliative approach. The cognitive discord that this impossible marriage would evoke would bewilder even the most hardened spirits. If a law in favour of euthanasia rebaptised « medical aid in dying » came to see the light of day, we would have to build clearly identified places that would be destined for this practice in order to reassure the thousands of sick people who are entrusted to our care and who litterally fear that we will cut their lives short. According to Bernard Lapointe, doctor and chief of palliative care at the Jewish General Hospital : « The fact that a great majority of us do not hold up the legalisation of euthanasia and of assisted suicide results from heartrendered reflection, that has ripened at the cost of numerous sleepless nights, a reflection that both recognizes the danger that exists between the sick and the doctor and the transgression of a secular ban by giving the doctor the power over life and death of another. » (Lapointe, 2010).
I am trying to mesure the impacts of « medical aid in dying »in the follow-up of grief. Firstly, the confusion of the terms « euthanasia » and « medical aid in dying » are problematic; they put out a trap for the spirit. Which is to say that the use of an ephemism in the context of end-of-life does not reassure ambivalent people faced with the treatment that is offered to them. Already, a certain number of families want to go over their loved-ones files to make sure that the medecine has in no way provoked nor precipitated their death. However, palliative sedation dispensed according to strict guidelines takes away, when necessary, all stubborn pain but does not prolong or abridge life. The commission report (2012) indicates that Continuous palliative sedation consists of «the continuous administration of a medicine to a person, with the goal of relieving his pain by rendering him unconscious until death. » In what relates to intermittent palliative sedation, that is characterized by the « administration of a medicine to a person, alternately with periods of awakening and of sleep, with the goal of relieving pain by rendering the person unconscious. Meanwhile, euthanasia is an « act that consists of intentionally provoking the death of a person at his request to put an end to his suffering. »
I am not certain that the requests for euthanasia are always formulated with the sole goal of putting an end to one's suffering because, just like the dying, the living from time to time experience existential suffering that by far precedes death. From a psychic point of view, this suffering fluctuates, meaning, that it comes and goes by turn throughout life until death. Existential suffering which is often characterized by physical or at least amplified ailments, is tributary to the anguish of death that no one is spared from. The feeling of helplessness that follows brings the being to decide for himself the hour of his death. However, this type of control in no way diminishes the anguish that death arouses because, even forestalled, it will end up arriving. The suffering of the critically-ill is important, but is inscribed in the continuum of life that will eventually end. If we had to eradicate global suffering by such a radical formula as euthanasia and assisted suicide, we would lose out on on the many alternatives that are already in place to apease the sick by effective means which we already dispose of, including palliative sedation, included as a treatment, when all other attempts have failed. Our Quebec government recognizes the legitimacy of this medical practice at the point of death when it applies to an ethical and humanistic aim, with the clear consent of the sick and approval of his family. If a euthanasia must occur, why not have recourse to an ethical comity instead of a lawman? Especially since we never cease to read or hear that only a small number of people will have access to euthanasia.
Dying as fast as possile and living as long as possible, this is the ambivalence in which the person in end-of-life finds himself. One day the dying wants to leave this world so as to finish with suffering, his own and that of his family but as soon as the following day, he thanks his lucky stars that he's still there or else its a relative who discovers in this period a meaning that everyday life doesn't emit.
Accompanying a person in end-of-life, assisting him in all that he is, in what he represents to his closest witnesses, in what he manages to transmit to us as values derived from care, humanises us and raises our awareness of the necessary relationary interdependance that I'll express with this phrase : « Lend me your strengths while I gather my own. » These strengths bring forth the capabilities each person discovers in living and not in running from what is happening to oneself. It is often psychic and spiritual stakes that take over when the physique deteriorates and life draws nearer to death. The dying detects in himself a dimension that everyday life could never have drawn forth. On the other hand, the healthgiver must develop his competence to relieve pain while preserving the dignity of the sick. These precautions, let us call « the concern for others», permit relatives to begin the grieving process, to detach themselves gradually and as serenely as possible from the significant other and this in a space where life and death intersect without the process being catastrophic. Short-circuiting the last date with euthanasia or assisted-suicide constitutes in my opinion, a great risk. That of missing the unexpected message, meaning, the ultimate message that the unexpected reveals to us.
That is what Viktor Frankl (1988), psychiatrist and philosopher, described as the human's height of potential, the capability to make sense of the life that is being stolen from him. After having lived in concentration camps until he was scared of dying in one, Frankl told us :
« Ultimately, man shouldn't ask what is his reason for living but must recognize that the question is being asked of him. In one word, each man must face the question of existence and he cannot answer without taking charge of his own life. In his chapter on the meaning of suffering, he also affirms: « It is possible to find a meaning to existence, even in a desperate situation but it is impossible to change one's destiny. What's important is to draw forth man's highest potential, that to transform a personal trajedy into a victory, a suffering into a human realization. When we cannot change a situation, if we are afflicted with incurable cancer for example - we have no other choice than to transform oneself. »
Although the special commission currently envisions the adoption of a bill of law on « medical aid in dying» and not on « assisted suicide », I would like to say a few words on suicide and on assisted-suicide since today's theme draws on global suffering.
A major turning point in my life was the day I met a man bedecked with great suffering and whose presence at my side transfigured me. I will tell you this story because, as our studies are progressing it is the experiences that explain the perception and sgnificance that each person attributes to life, to the perspective of losing and the act of dying.
Just before turning 30, I met for the first time a person they had brought back after a suicide attempt. This man found himself in physiotherapy after having set himself on fire. His face was ravaged and under full reconstruction; his body was emaciated, weakened and hard to look at. The man was lying on a stretcher while I was sitting in a wheelchair. I couldn't bring myself to obey the physiotherapist who for several months had been trying to get me to stand up so I could relearn how to walk. The pain was too intense for me to attempt to accomplish this feat. I would have wanted to die in the plane crash that killed many people including the members of the crew who I today consider as my first caregivers. Like everyone who is confronted with death, I was then inhabited by an ambivalence between my strong instinct for life and the hold that death by its proximity exherted over me.
That day, in physiotherapy, it was the suicide survivor who made the first steps. I observed him with astonishment while telling myself : this man had done everything in order to do himself in while I aspired above all else for my own survival. He painfully gave it a try and moved ahead a few steps. His movement inspired me to follow him. This is how I, in turn got up and got over the intensity of my pain. I was inspired by the courage of this grievously burnt man who was forced to take up life again when he had previously tried to end it. I found him worthy of coming out of his torpor and, unwittingly, inviting me to do the same. This suicidal man gave me a taste for deepening my reflections regarding the price of life and the irreversability of death. This strong experience taught me that the dignity of one may be born from the history of another. The burnt man ennobled me and invigorated me to come face to face with my reality. In short the suicide survivor physically and psychologically reanimated me. And it's partly thanks to him that I went on to study psychology as a second vocation.
My work as a psychologist allows me today to approach the sick, some serene, others in distress, some willing families, others in conflict, to rub shoulders with devoted and generous volunteers, to collaborate with a team for whom dignity and benevolence constitute surpreme values and deep motivations. The accompaniment of the critically ill and their families, the support of grieving people and of the caregivers are at the very heart of my psychology mandate and of my love of helping. However, it's not rare that a relative of the sick may have thoughts of suicide or that one of the family members, in a not so distant past, have committed suicide.
I have looked into the question of « euthanasia » and of « assisted suicide » in my book When trials become life (2010). I emphasize that the surveys formulate the question in terms of « for » or « against », as if we were asking the population : « Are you for or against amputation? » Whose euthanasia, the amputation of what? It's not that simple – or maybe it is that simple – to answer when we are not affected closely or by far by such a grave decision. To the question « If you had atrocious pain while dying, would you wish for euthanasia to deliver you from it? » Who wouldn't answer yes to the offer if they didn't know that other options existed to help alleviate the suffering? Palliative care was conceived to assure good medical practices : alleviating physical pain, appeasing moral suffering, avoiding aggressive therapy and to comfort the sick. Once again, euthanasia is not a treatment but quite the opposite, because euthanasia instantly puts an end to treatment and to life. With respect to « assisted suicide », the expression itself gives me the shivers when we think that's it's our duty to rescue the person who's attempted to end his life as soon as we've been informed of it. We are stuck in a double bind, with the confusion between « assisted suicide » and « the assistance to the threatened life » of the suicidal person. In clinics, a certain number of people often confirm to us that once the suicidal crisis is appeased, the zest for life reappears.
I welcome and I listen to the relatives of suicide victims for whom getting over the grief seems unsurmountable, because of its repercussions, the most universal one being the feeling of culpability for not having acted before the irreparable act. We have to see the distress of relatives who couldn't intervene in time to understand in hindsight, that life has a price and that an announced and tamed death, contrary to a knowingly-provoked death, facilitates the grieving process.
The world is upside down. While we strive for days to find survivors under ruins, to extract them from the worst conditions even if their physical states leave something to be desired, here we're thinking of deterring the natural process of death by precipitating the death of a relative who has made the request to a third party. All the sick tell themselves : « I don't want to be a burden to my loved ones » and all their relatives answer : « I would like to give back to you just a little part of what you have given me. » All family members are not willing or are able to accompany someone until death and that's perfectly normal. Should ever a sick person be deserted by his family, there are trained volunteers who are willing to take their place at his bedside.
I've had the chance to meet and train more than a thousand volunteers in many of Quebec's regions. I have met many people who are willing to assure their presence and a fraternal support. Did you know that « 40% of the Quebec population does volunteer work for an average of 162 hours per individual in various sectors of our society? » (Éduconseil, 2010). This discovery personnally reconciled me with « to each his own » and « autonomy at any price. » For doctor Serge Daneault, « Dying is a social, community act, because dying is essentially, ceasing in a definite way to forge links with the living; dying, is to not be in relation with others in the concrete space of life. We die to others as we live in relationship to others. » (Daneault, 2010).
Wanting to eradicate suffering by eliminating the suffering individuals who ask for it, comes from the magic thought and the feeling of omnipotence. Suffering is not only a part of existence, it manifests itself in the dying process. There exists no misfortune without happiness nor any happiness without misfortune. Euthanasia is a lure, a radical and irreversible response to a person going through a timely and temporary crisis.
The human being is doted with an extraordinary and under-estimated aptitude, that is the capability to adjust himself to the ruses of the sick until they have drawn their last breath. The attitude of the sick is constantly oscillating, his state is unstable, the uncertainty is heavy but he tries to overcome the irritants by all possible means. Those who are dear to us and that we presume to know, unveil to us in the end the unknown part of their being. The human being cannot presume in an upstream of discouragement nor predict his resilience. We know that when a person receives a diagnosis of an incurable disease, the process of adaptation of his physical condition is under a constant evolution and his desire to put an end to his days often fades as his death approaches.
I remember this man, a 60 year-old engineer, bedridden in palliative care for the last two weeks of his life. He implored many members of our team : « My family and I are ready for my departure, I am not depressed, my affairs have long been in order and I'm impatient. Tell me why you do not practice euthanasia when a patient asks for it? » That is the moment when the doctor proposed that I meet him. I didn't know if I needed to firstly broach the subject of euthanasia or the exasperation of the patient. But I was ever confident in the spontaneous and authentic relationship that would establish itself between us. He quickly explained to me that his life had no more meaning. I stayed silent and reflective. Then I lifted my head and I looked at the drawing of a child. It was signed « Sabrina, 4 years-old. » His granddaughter had drawn a metal bed in which a stick person was lying in. Her drawing was covered with a huge heart in which was inscribed the name « papi ». I told him : « The end of your life is serving as a canvas for your granddaughter. By facing your certain death that will take place at an unknown time, you are showing her that the human being is strong thanks to rays of light that permeate throughout the somber days of the terminal phase. By your presence, you are giving others the opportunity to discover and to love you in your vulnerability. Without hesitation and without fear, Sabrina jumps on your bed, lies down at your side and demystifies the hospital and all its critically ill; you are allowing her to tame death and to express her anticipated grief in exchange for her drawings. Maybe your stay in palliative care will only have served for that reason, to give important souvenirs to a child, who when grown, will have a less revolted attitude about death, the capability to separate herself before it becomes too heartbreaking. It happens that we do not hold on to life for ourselves, but that the lost sense in one resounds in the lives of others. » This man died peacefully in the days that followed. The little girl put her last drawing on his inanimate body and continued talking to her grandfather until her relatives brought her back home.
I've just gone through Marie de Henezel, a French psychologists' most recent book (2013), whose work titled, Nous voulons tous mourir dans la dignité, (We all want to die with dignity) never ceases to inspire me. I would like to share an excerpt: « I feel the anxiety of my generation. I'm sixty-six years old and like many people my age am concerned with living and dying with dignity, I am surprised that a leftist government, a carrier of values of solidarity, finds more urgent to remedy the indignity of end-of-life by legislating on the ways to shorten an existence than in attacking itself firmly at the roots of indignity. «Dying with dignity » has taken on a different meaning today. It signifies anticipating one's death so as not to to decay or impose on others this decay. As if the degradation of the body and of the mind were signs of indignity. Marie de Hennezel denounces the capture of this magnificent word « dignity » by an association that fights in its name (The Association for the right to die with dignity), in favour of euthanasia and assisted suicide. We cannot reduce the dignity to autonomy nor to the integrity of the body nor even to self-esteem. Finally Marie de Hennezel asks a powerful question : We have to ask ourselves if a society can at the same time fight against the suicide of some and organise the suicides of others. »
I'd like to conclude my presentation by sharing with you certain thoughts of authors which, in their own way and in turn, accompany me in my psychology work.
Firstly this witnessing from a father to a grieviously ill son who died at the age of 14: « Everything I've learnt from you will now enable me to live without you. » (Cummings, Richard, Michaël, mon fils, Montréal, Éditions de l’Homme, 2009, p. 128).
I also meditate on the writings of Léon Burdin about the job of accompanying. This phrase particularly moved me: « Even lost, his life was not over. He still had to pass on the torch. » (Burdin, Léon, Parler la mort. Des mots pour la vivre, Paris, Desclée de Brouwer, 1996, p. 66).
While my colleague Marie de Hennezel, reminds us to : « Welcoming a person's wish for death does not mean that we are engaging ourselves to execute it. » (de Hennezel, Marie, Nous ne nous sommes pas dit au revoir. Aider la vie, Robert Laffont, Paris, 2000, p. 22-23)
Finally and just before welcoming your reflections and comments, I would like to leave you with my own thought on the sense that the dignity of a person has endowed upon my eyes: « The dignity of a person, by even greater force of logic, of a sick person, first passes through the regard his entourage looks upon him, by the sense that we attribute to a diminished but not banal life. The dignity of the sick forms or unforms itself according to what we send him as images and as messages. » (de Montigny, Johanne : Quand l’épreuve devient vie, Médiaspaul, Montréal, 2010, p. 204).
Bibliography :
Aubert, Nicole : Le culte de l’urgence (La société malade du temps), Flammarion, 2003, p. 25 Borod, Manuel : Montreal Gazette, Opinion, There is no role for palliative care in providing
euthanasia le 21 janvier 2013
Commission spéciale sur la question de « Mourir dans la dignité », rapport mars 2012, p. 17-18 Cixous, Hélène : La dernière phrase, Corps écrit, no 1, L’écriture, PUF, Paris, 1982, p. 93-104 Boisvert, Marcel; Daneault, Serge : être ou ne plus être (débat sur l’euthanasie), les éditions Voix parallèles, Montréal, 2010, p. 14
de Montigny, Johanne : Quand l’épreuve devient vie, Médiapaul, Montréal, 2010, p. 163-170
de Hennezel, Marie : Nous voulons tous mourir dans la dignité, Robert Laffont, Paris, p. 7, 19, 20, 101 et 114
Éduconseil (en collaboration avec le Réseau de l’action bénévole du Québec), document intitulé Gestionnaire de bénévoles, 2010
Frankl, Viktor Emile : Découvrir un sens à sa vie, (traduction de : Man’s search for meaning), Les éditions de l’Homme, Montréal, 1988, p. 118 et 121
Lapointe, Bernard : Consultations particulières et auditions publiques en vue d’étudier la question du droit de « Mourir dans la dignité », Assemblée nationale du Québec, le 17 février 2010, p. 7
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