Spiritual Journey in patients with diseases threatening the life
Bruno CAZIN, M.D., hematologist and catholic priest, general vicar of the archdiocese of Lille, France.
Abstract: During their follow-up patients with oncohematologic diseases go through different phases and live an intensive internal journey. They slowly recognize their own weakness and vulnerability and begin to accept them often after an inner struggle. At the same time, they are experimenting frailty, they feel the pleasure to be loved and cared. They are discovering that they are not fully the owners of their own life and that relationships are constitutive of their humanity. They appreciate the centrality of the gift in human being. The experience of kindness has set back the violence of suffering.
The analysis of a large medical experience encourages us to consider spiritual care not only in terms of peace and well-being but mainly as a quality of presence and hearing that helps the patient in this interior journey to discover the truth about his human condition and to be open to the goodness and tenderness.
Keywords: Oncohematology, Spiritual care, Gift, Relationships
Scientific knowledge and therapeutic possibilities in blood diseases progressed dramatically during the past forty years, increasing life expectancy in a large range of pathologies when others still have bad prognosis. However the majority of hematologists is involved in clinical research and may offer new therapeutic options or experimental drugs until the latest stages of the diseases. Patients and physicians can hope that they will defeat disease and death. That leads frequently both and especially medical doctors to relegate death outside of the clinical concerns. Nevertheless, patients develop self-analysis and search for meaning during all the course of the disease’s evolution, revealing the intensity of their spiritual life.
In more than 30 years of medical practice in oncohematology, I supported hundreds of patients through the course of their disease. I witnessed deep experiences of internal journeys during the different steps of their illness: initial diagnosis, therapeutic indications, recruitment in a clinical trial, remissions, relapses, complications, hematologic stem-cells transplantation. I would like to clarify that although I am a catholic priest since 1991, I worked as a physician in a public university hospital and not as a hospital chaplain. Along medical consultations and hospitalizations, repeated interviews allowed growing confidence. On a regular basis, the quality of presence and of listening allows communication of thoughts and reflections. The most important ones are frequently shared on the doorstep, just out and about. Words are tossed to who is ready to hear and respect who spoke them. Key messages were often given discreetly when not subliminally. I would like to point out the most relevant evolutions observed in patients with hematologic malignancies, whatever their beliefs. It is however impossible to relate the multiple singular spiritual journey and for pedagogical reasons I will describe in broad outline the main elements, at the risk of going into caricature.
During their medical follow up, the patients experiment anxiety, loneliness, emptiness and poverty. They focus on the essential; appreciate with more sensibility the positive aspects of life: friendship, kindness, beauty, little pleasures. They gladly review their lives and sometimes express the desire for reconciliation with some enemies. They slowly recognize their own weakness and vulnerability and begin to accept them often after an inner struggle that is even more important when the patients exercised high responsibilities and are aware of preserving their autonomy. Consent to mortality only occurs after several phases of refusal, denial, bargaining, anger and depression as described by Elisabeth Kübler-Rossi, however frequently not in a linear process and progression, depending on disease outcome, psychological resources and environment. When the end of the life is approaching or in case of stem cells transplantation, the spiritual pathway often intensifies. The risk of death drives the patient to interior transformation. It is not anymore easy to cheat, as frequently in the active life, in which people consider themselves as invincible. The people who had been running from the truth for a long time are discovering in their poverty and dependence how much they receive from others: family members, health care workers, volunteers… Sad and painful experience of suffering gives way to a new beginning. The patients often share a feeling of happiness, aware of the unusual nature of their feeling in such a situation. At the same time, they are experimenting frailty, they feel the pleasure to be loved and cared. They are discovering that they are not fully the owners of their own life and that relationships are constitutive of their humanity. They share the mercy of being born again, receiving their life from others. They leave the illusion to be the masters of their life.
As an example, I quote this fifty-year-old nursing home director, initially considered obnoxious by the caregivers, finally cured from leukemia after umbilical cord stem-cells transplantation: “Doctor, I thank you because in all this process of healing, I discovered humility”ii. Another patient relate after many years of medical follow-up and stem-cells transplantation: “The essential issue is the gift”iii, meaning not only the generosity of the stem cells donor but the centrality of the gift in human being. He completed explaining that this experience is very difficult to communicate, even to his wife and a fortiori to his works colleagues. For these two patients, now recovered from their hematologic diseases, these spiritual discoveries changed their vision of life and appear to be particularly relevant many years after.
Some patients experiment an unexpected delight, a kind of lightness, an indescribable joy that they try to share. They feel full of gratitude towards anyone who has done them a good turn. They appreciate goodness and tenderness, amazed by attention and delicacy for them despite their frailty. The experience of kindness has set back the violence of suffering. These attitudes of caring towards them restore their dignity as explained a patient of poor social condition, a few days before his death, while he was still ambulatory: “The worse is not disease, but human society. Along my life, I was considered as a nobody. At the hospital, I was treated as anyone. I restored my dignity.”iv This example leads us to understand dignity, independently of performance and entrusted to the solicitude of the other, especially health care workers, physicians, family members, relatives and volunteers. However I do not underestimate the cases of neglect or abuse of frail patients, especially when caregivers are stressed or poorly managed.
Life as a gift, interdependency, importance of relationships and the power of goodness provide significant insight into the issue of the human identity. I dare to use the word truth to summarize them. Patients are mostly welcoming that truth which sets them free and reduce their anxiety. They experiment a freedom towards life received as a gift and not anymore as an object they have the illusion to own. The revelation of that truth may be difficult for patients of the modern western world, sensitive to their self-sufficiency. However most of the patients move long between refusal and consentv, illusion and truth. Such an experience is deeply spiritual whatever the patients profess a religion or not. However, this spiritual pathway reveals profound affinities with Christian faith, which professes salvation through the way of humility that Jesus Christ walked until his death on the cross as described in the hymn of the letter of Saint Paul to Philippiansvi.
This analysis encourages us to consider spiritual care not only in terms of peace and well-being but mainly as a quality of presence and hearing that helps the patient in this interior journey. The spiritual support allows him to discover the truth about his human condition and to be sensitive to the goodness and tenderness provided by health providers and visitors along with offered supportive care, from the onset of the disease until the terminal phase. Faced with a life threatening disease the subject mobilizes physical, emotional and social resources and discovers a new sense to his life, between experience of frailty and wonder of kindness and gratuitousness in human relationships. It is why we shall consider spiritual care as constitutive of comprehensive care for patients with malignant diseases besides physical, psychological and social aspects. It cannot be assimilated to psychotherapy neither put into competition with it.
Attention to spiritual dimension of care is required for all care givers and not only for hospital chaplains. The experience related in this paper comes from a medical doctor who is also a catholic priest, trying to point out the spiritual evolution of the patients along their disease and medical follow-up. Spiritual dimension of life is not an independent area, neither an extra measure of harmony. Interior transformation though the disease course helps to understand spiritual life as the movement of human existence that cannot be excluded from the field of care, neither be confined to religious. However the individual spiritual pathways can find languages and symbolisms in the treasury of spiritual traditions which can help the expression of their own thoughts and give them the opportunity to live intensively the experience of illness and care.
Acknowledgement to Quentin Portet for review of English language.
iiIV The Bible, Saint Paul to the Philippians, 2, 5-11
II Cazin B. : Dieu m’a donné rendez-vous à l’hôpital (2015) Bayard, Paris, p. 150
iiiIII Cazin B. : Dieu m’a donné rendez-vous à l’hôpital (2015) Bayard, Paris, p. 113
ivIV Cazin B. : Dieu m’a donné rendez-vous à l’hôpital (2015) Bayard, Paris, p. 101
vI Kübler-Ross E. : On death and Dyning (1969) Routledge ISBN 0-415-04015-9
VI Ricœur P. : Philosophie de la volonté. Tome 1. Le volontaire et l’involontaire (1950) Aubier, Paris, pp. 441