As presented at Third World Congress of Psycho-Oncology, on October, 1996, New York

I - PRESENTATION

Our intention, for this purpose, is to briefly present, our reflections and experiences regarding psychotherapeutic support to the gravely ill and terminal people in particular those with cancer and to their families, as developed by us through several services in our context and through QUIRON - Centro de Estudos e Práticas Transomáticas (Center for Research and Trans-somatic Practices), in Rio de Janeiro, Brazil.

In the first place we describe QUIRON, an organization which we coordinate and which is the source of the guidelines for this project. Our philosophical and theoretical principles are inherent in the following themes: health and related concepts; body and psychosomatic psychotherapy; music therapy, a possible resource; illness and its various manifest and/or hidden meanings; impermanence and awareness.

Secondly, we illustrate our work of assisting individuals with grave and/or terminal illnesses by presenting a clinical case-study in individual psychotherapy followed by related theoretical comments; Then, we describe the functioning of the departments of psychology and music therapy at the AACN (Support For Children With Cancer Association) - Ronald McDonald House, in Rio de Janeiro.

And, finally, we are describing the socio-economic and cultural context in which all of above and other health-related services are presently taking place in Brazil.

II - OUR INSTITUTION

1 - INTRODUCING QUIRON

QUIRON was founded in 1990 in Rio de Janeiro, Brazil, by professionals involved in the area of somatic psychotherapy. Quiron's objective is the research of educational themes and practices related to the promotion of health and the development of the human being, focusing fundamentally on the inter-relationship between the somatic, the psychological and the spiritual.

In line with this mission, QUIRON has always concentrated on a number of human issues, such as those related to primitive emotional development (the gestation period and birth), creative potential development, notions of ethical values, the study of the complicated emotional make-up of intense crises, ecological and cultural phenomena, and the experience of facing illness and death. We at QUIRON believe these situations to be inextricably related to corporal, psychological and spiritual occurrences.

Through QUIRON several projects are developed: accessible psychotherapeutic services are made available to the population and therapists receive supervision. Spaces of shared experiences, knowledge and ideas are offered through lectures, life experiences, debates, and seminars; the exploration of theoretical issues and the practice of therapeutic massage are other aspects developed; reflection, awareness, and meditation meetings are promoted, and the publication of texts, magazines, and books to be published are further activities continuously worked on.

Part of our work has focused on philosophy and the study of preventive and therapeutic practices related to the process of becoming ill and the process of death. We have contributed in a diversity of modalities on the practice of psychotherapeutic work with people with grave and terminal illnesses, especially those with cancer, their families and the institutions organized to take care of them.

2 - ACTIVITIES DEVELOPED THROUGH QUIRON WHICH ARE LINKED TO THE STUDY AND THE PRACTICE OF THERAPEUTIC WORK WITH PEOPLE WITH GRAVE AND/OR TERMINAL PHYSICAL ILLNESSES

>>> Individual and Group Psychotherapy for People with Grave Physical Illnesses - since 1990.

>>> Lecture Cycle "Energy and Healing" - amongst others, the round table "Death and Dying", coordinated by Susana Hertelendy (Quiron's coordinator), Vania Didier (Quiron's coordinator), Helion Povoa Filho (ortho-molecular doctor), and Remo Rotella Junior (psychiatrist) - June 1990.

>>> "Energy and Healing" Magazine - amongst others, the articles "Death as Initiatory Process", by Vania Didier, and "Planetary Moment of Transformations and the QUIRON Center", by Susana Hertelendy - October 1990.

>>> Round Table "Healing and Transformation Myths" - coordinated by Marly Chagas (Quiron's coordinator), Lays Rocha (priestess in the Candomblé Afro-Brazilian religion) and Janine Milward (astrologist) - March of 1991.

>>> Video Debate "Experiencing Death", introducing the videos "Aids, Life & Love" and "Kübler-Ross: her ideas and beliefs" - coordinated by Humbertho Oliveira (Quiron's coordinator) and Susana Hertelendy - June 1991.

>>> Psychotherapeutic Support Group for People who are HIV+ - coordinated by Humbertho Oliveira and Susana Hertelendy - 2nd semester 1991.

>>> Department of Psychotherapeutic Services and Assistance for Institutions for the Gravely Ill - supervised by Humbertho Oliveira and Susana Hertelendy - since 1992.

>>> Study and Research Group on Clinical Practice with People with Grave Physical Illnesses - coordinated by Humbertho Oliveira, Mauricio Tatar (homeopathic doctor and acupuncturist), Susana Hertelendy and Vania Didier - since 1992.

>>> Reflective Meeting "Personal Experiences of Therapists who Work with Terminal Patients" - coordinated by Ann Bowman (director of Transformational Energetics Inc., New York) - July 1993.

>>> Psychology and Music Therapy Sector in the Support for Children with Neoplasia Association - coordinated by Marly Chagas - since 1995.

>>> Introductory Training to the Practice of Working with People with Grave Physical Illnesses - coordinated by Susana Hertelendy and Vania Didier - during 1995.

>>> Cycle II "Energy and Healing" : "Illness as a Path to Healing - new perspectives of therapeutic assistance to people that experience the processes of becoming ill and of death" - coordinated by Humbertho Oliveira, Marly Chagas, Mauricio Tatar, Susana Hertelendy, and Vania Didier - October 1995.

>>> Papers presented at the 2nd Brazilian Conference on Psycho-Oncology: "Psycho-Social Experience in an Institution of Support to Children with Cancer and Their Families" (authors: Marly Chagas, Humbertho Oliveira, Angela Machado (psychologist and speech therapist), Elizabeth Faria (psychologist and psychotherapist), Rita Lesiet (psychologist and psychotherapist), and Jacila Silva (music therapist); "Illness as a Path to Healing" (authors: Humbertho Oliveira, Mauricio Tatar, Susana Hertelendy, and Vania Didier) - April 1996.

III - OUR WORK

1 - A CLINICAL APPROACH

J.A. sought me out on 8/26/91. She had been diagnosed with lymphatic cancer in the sub-mandibular region two years earlier. She had done Jungian and Freudian therapy for over twenty years. When J.A. came to me she said she was interested in exploring another therapeutic approach and, as she had been told that I worked "with the body", had decided to try something different, in spite of, she stated, her 75 years.

J.A. had, until then, led an active and productive professional life. She had been one of the first students to graduate with a Social Work degree from the PUC (Catholic University of Rio de Janeiro). She had developed her activities in various countries - Venezuela, Philippines, Japan, the USA - where she studied and also worked for the UN and the OEA.

She had never been married. When she was 50 she decided to adopt a girl, whom she loved very much. Her first search for therapy was prompted by her desire to better understand her daughter's needs and to update her concepts of education. As she had been raised a daughter in a traditional family in Ceará, J.A. often found it difficult dealing with the girl in a liberal and permissive way.

J. A. was aware of how much the infrequent physical contact, performance demands and repression of sexuality in her own upbringing had contributed to the difficulty she now felt in sensing her body and expressing tender emotions. She also understood how these childhood experiences had exacerbated her aggression as well as her rational and intellectual defenses. She carried a rigid armor protecting a deep desire for love and tenderness.

After a couple of months of individual therapy, I suggested J. A. attend group therapy. J. A. initially rejected it, thinking that people would only see her as a mother or grandmother. That was not how she wanted to be perceived.

J. A. was vain, attentive to her appearance and demonstrated that her sexuality was alive.

The group I invited J. A. to attend was made up of people dealing with issues of integration and maturation in their psycho-emotional aspects, and individuals with grave illnesses such as Aids and Cancer.

We worked on various levels. Focusing on the somatic/emotional within a neo-Reichian and transpersonal approach, we worked through reflections and discussion of the existential themes in each member's life: illness/health, life/death, fear of living/fear of dying, impermanence, separation/loneliness, and emotional childhood wounds and their carry-over into adult life.

J. A. participated in the group until two months before her death. In the last months, she experienced an acute drop in her immune system due to the chemo and radiotherapy with consequent opportunistic infections. Pneumonia and herpes on the intercostal region debilitated her and brought about a new kind of pain. Yet J. A. still tried not to miss the sessions. She considered them vitally important during this time of intense and crucial personal transition. From time to time J. A. asked me if I would stay by her side until the end. In the last weeks - when the cancer reached the cerebral region - I visited her in the hospital and then at her home. The two of us spent long periods of time holding each other's hands, in silence, while simply looking at one another.

J. A. passed through the gates to the vast unknown on November 26, 1995. The daughters and granddaughters whom she greatly loved stayed by her side until the end.

Her fight, courage, fragility and strength - which she herself had difficulty acknowledging and accepting - inspired everyone in the group including myself. I would like to honor and remember J. A., here, telling her history.

2 - A BRIEF THEORETICAL GROUNDING TO OUR WORK THROUGH QUIRON

Generally speaking, health is understood to be a state of not-illness, of not-weakness or pain, one in which the individual is able to continue living without great discomfort or alteration of his/her lifestyle. It is much easier to take some medication, a quick fix, to relieve pain than to take the time to understand the message being given by the organism. We are too focused on immediacy, treating only the surface appearance and not looking deeper into the origin or the cause of our illness.

Health and illness are aspects of the same movement. Through disharmony, we achieve new harmony, a new frequency, a new energetic platform. In the transition period into this new state, illness must be experienced. Illness should not be considered something strange, but rather, a consequence of a set of factors culminating in disharmony and imbalance. It is through illness that we reach health. We frequently witness accounts by people with grave or terminal diseases who found themselves living better or in greater health after becoming conscious of their illness.

The basic function of the holistic doctor is to mirror the truth to the patient and to help him/her develop a consciousness of his/her life process and of the mechanisms (both the obstacles and the illusions) created that generate the illness. Another basic function of the medical doctor is to empower the patient to tap into his/her own personal healing resources, thus enabling the recovery of self esteem, acceptance and forgiveness.

Lymphatic cancer, herpes zoster, strong pains... As described by Susan Sontag, illness is the dark side of life, in its own way a more onerous citizenship. Each living person has double citizenship-one in the realm of health, the other in the realm of illness. While we all prefer to use only the good passport, sooner or later, each one of us will be forced, at least for a brief period of time, to become identified as a citizen of the other country.

Her viewpoint is that illness is not metaphor and that the most honest way of confronting it, and likewise the healthiest way of becoming ill, is to do it free of metaphoric thought.

To work with the body in psychotherapy involves using the "Functional Unit" or "Basic Identity" concept created by Wilhelm Reich. According to this concept, bio-energy or orgone energy is the source of all human events. This means that bodily attitudes correspond to emotional attitudes. In other words, they are interchangeable and can influence each other.

Any region of the body, in addition to its living function, can be the site of specific energetic conflicts between the psychic and the somatic. Such conflicts are emotional charges corresponding to events in the past not processed adequately and, therefore, still active and interfering in various ways in the individual's life.

Once mobilized, these charges become loosened energy and are distributed, thus facilitating both the awareness of previously repressed experiences and emotional expressions, and the organization of a new psychic/somatic modus vivendi.

The somatic-emotional level is the body/mind/energy level. On that level, connections are made between any of the various regions of the affected body and the expression of subjective contents. Careful observation will, thus, show that once irregular breathing, peristaltic silence, ocular contraction and various organismic disfunctions are mobilized, the deeper meanings of the source of illness will surface. And, likewise, once spontaneous breathing, rhythmic peristaltic sounds and a relaxed eye contact-in brief, the natural state of the whole system are reestablished, the person could be said to be creating a new energetic field wherein to ground his/her health.

A therapeutic process based on a more holistic view of the human system can open the way to a search for deeper meanings to the concept of healing.

The transpersonal is a level integrating body, mind and spirit. This kind of perspective, an example of which is David Boadella's Biosynthesis, creates a bridge between the psychosomatic work and dimensions beyond the physical, inasmuch as it places particular emphasis on both spiritual grounding and transpersonal states. Therapies which consider the "spiritual" aspect of the human organism, require a profound reflection on the therapist/client relationship. Such words as resonance, empathy and transference affection are various other ways of referring to the same essential aspect of this human connection.

Concepts such as inner ground, self, high self and others, are references to an essential reality related to the presence of the more profound being in each of us.

Thus, the experiences of being ill and/or of dying carry with them the spiritual significance of continuous learning. In that sense, the process of becoming ill and of dying are a special comfort for those who can allow another body/mirror/support/contact to act as encouragement in their lives. As therapists, and humans also subject to the same experiences, we need to find our own paths and prepare for the practice of this kind of interchange.

In addition to the philosophical Cartesian assumptions which guide our understanding of the human being, we also have, as part of the package, a narcissistic orientation demanding that we be continually focused on the creation of a self-image. A self-image in which economic status, a socially successful profile, beauty and the attempt to extend youth indefinitely are considered principal. In attempting to evade nature, we are doomed to failure. We grow old. We die. It is through our narcissism that we attempt to control death and aging, to impose on nature our aspirations of power and immortality.

Since the changes in paradigm occurring at this moment are reflected in our languages, it is part of our effort at renewal to constantly examine what we mean by such words as health, illness, cure, life and death, making sure that what we say is consistent with what we believe. Illness - described by many as a bridge between two states of consciousness -, like any crisis, is also a process of transformation, a rite of a passage.

Today it is steadily acceptable during intense crises of life transitions, to harmonize traditional approaches of treatment with alternative ones, to work from a medical perspective, as well as a therapeutic and spiritual one, as ways to open minds to a broader and more holistic perspective of viewing individual processes which can lead to a more serene and secure self-management of the path to follow.

At any rate, illness seems to have very personal meanings to each individual at each specific stage. It is often described as the entrance in another reality.

As in the case of emotional difficulties, illness - and they often come hand-in-hand - facilitates contact with other, often neglected, dimensions of being. Such contact may place a person face-to-face with his or her shadow, to use a Jungian archetypal concept.

The laws which govern our reality are unyielding. All of the elements which on one day come together to create a whole, on another day, we never know when, will disintegrate. This instills a basic insecurity that makes us both avoid and negate the finite aspect of our existence. In this way, we cheat ourselves of preparing emotionally and spiritually for the most certain of all uncertainties that fills and forms our existence.

3 - INSTITUTIONAL ACTIVITY (work developed through the AACN - Support For Children With Neoplasia Association, Ronald McDonald House)

The Ronald McDonald House is linked to the Support for Children with Neoplasia Association and has, as one of its main objectives, the provision of housing to children with cancer who are not residents of Rio de Janeiro, to better facilitate the continuation of their hospital treatment. The House can accommodate twenty children or adolescents, each accompanied by an adult. In order to achieve its objectives, the House counts on the collective work of volunteers who perform various services from direction of the House to care of the children.

The Psychology and Music Therapy Sector at the Ronald McDonald House:

>>> Activities with volunteers:

. Operative groups - reflections on volunteer responsibilities and sharing of personal work experiences

. SOS Services - referral to psychological assistance hen necessary

. Training - informational lectures and specific trainings

Our first action was to promote a meeting with the volunteers in order to explore, through group dynamics, the feared situations and the "ghosts" hidden behind insecurities felt by the volunteers in their contact with the children. We verified the following:


1) great anxiety justified by the fact that the volunteers were dealing with children who suffer and live so close to death; 2) exacerbated self-demands; and, 3) difficulty in acknowledging and dealing with their own feelings related to this work.

The issues involved with childcare were found as a more superficial component of the problem. They included: setting limits, attending to the children's specific needs, and the children's growth-issues which were about information gathering and the willingness to look at various problems. On a deeper level were the unconscious motivations, the personal motivations, issues concerning the contact with life and death, and issues concerning abandonment and loneliness. We needed to act on the two levels of need. We used the operative group model, group dynamic techniques and resources from body therapies and music therapy. The goal was to provide a connection between each person and his/her own style of being, a connection between each person and their emotions, as well as connections between the volunteers.

The volunteers who visit the children at the hospital have become a fundamental part of helping parents deal with their pain. They are also agents of mental health through their function as a link between the hospital and the House and as an intermediary between parents and doctors.

>>> Activities with the parents/guardians:

. Support group - reflections on the responsibility of taking care of an ill child and sharing of life experiences

. Psychotherapeutic support for the parent or for both parent and child

The adults responsible for the children of the institution demonstrate a great need to share, in a safe space, their struggles, their misfortunes and their hopes regarding their children's illnesses. These are people of a precarious economic situation who bring with them an impressive will to live.

Our objective is to offer a space for the sharing of feelings (with the strengthening of the love relationship between parents/guardian and child in mind); to facilitate an outlet for grief; and to make possible the exchange of enriching experiences. In this group, we have created a space where tension can be worked on; tension that arises when dealing with the different facets of a child's treatment. In leading this group, we use expressive techniques from group psychotherapy and from body therapies.

We have observed that the parents, during this dramatic moment, experience emotions which correspond to those described by Elizabeth Kübler-Ross on the reaction of people facing death. They are: denial, rage and anger, bargaining, depression, and acceptance.

Lately, we have tried offering the parents the experience of active techniques, therapeutic massage, music therapy, therapeutic theater, all of which facilitate the alleviation of personal anxieties and contribute to conflict-resolution.

Through the development of our contact with the parents and volunteers, we realized the need for focused crisis intervention work; both for the children and for the parents and volunteers. We named this service, still in its' early stages, SOS. So far our cases have concerned children depressed due to the intense emotional activities generated by their treatments. The reactions caused by facing the prospect of spending a lot of time away from home and family and dealing with the loss of a leg were also cases that justified the SOS. For certain situations, we recommended psychotherapy outside of the House.

>> Activities with the children:

. Music Therapy Support groups - reflections on living with an illness and promotion of well-being

. Psychotherapeutic support for the child or for both child and parent/guardian

The music therapy services are conducted by professionals from QUIRON and interns from The Music Therapy College at the Brazilian Conservatory of Music. We hope to provide the children with a space for emotionally intense exploration and non-verbal communication. This is affirmed by the music therapy setting. We observe that through rhythmic-melodic exploration we have achieved the possibility of catharsis and later, tension alleviation, especially in very young children.

Free improvisation, musical recreation and composition are techniques of music therapy that offer the children an experience that is essential to their psychic development: self esteem, sense of security, creative power, and human interaction. Pleasure, entertainment, singing and dancing, and the possibility of expressing sadness and hope establish the importance of these techniques.

In music therapy, the need of children for success and pleasurable experiences finds great possibility for expression. Rafael, for example, is a seven year old boy with hemiplagia (a consequence of his illness) who told us in his first session of his deep sadness at not having been able to play the flute again after the emergence of his cancer.

This could be resolved in music therapy. He could regain healthy and creative aspects of his child personality. He could experience life again, building favorable incentives to his psycho-neuro-endocrino-immunal system. This work is very stimulating. We are conscious of the fact that there are few occasions where psychology and, also, music therapy reach children who are sick in non-hospital settings. This is the great beauty of the House. The child plays, watches TV, enjoys video games, eats good yummy food, explores Rio de Janeiro, goes to the theater, the movies, the zoo, and the countryside. The child is together with his/her parents, also making many adult friends that form a support network for the child's pain and suffering. We strongly believe in, and strive to develop, these transforming pulses of life.


IV - QUIRON: THE PRESENT SOCIAL, ECONOMIC AND POLITICAL CONTEXT

1 - PSYCHOTHERAPY AND HEALTH CARE IN BRAZIL

A Concerned Focus on a Bleak Reality

Brazil is a peripheric country undergoing a particularly hard economic transition. Behind an apparent stability there are serious problems reflected mostly in the social area. Thus, health and education have been left unattended, as have been left unanswered the demands for funds to maintain public hospitals and to meet the salaries of health personnel. Despite its façade, this administration has continuously ignored the public's opinion on the funding needs for research, the pleas for support of social services in general, and the demands for better pay by public university personnel.

It is not in our interest to elaborate on the results of such attitudes and styles of governing or managing public funds. But, it is important to mention the increase in unemployment, the continuous migration into the large cities - particularly into Rio and São Paulo -, the steady increase in urban violence, the closing down of public hospitals and the very precarious system of public health. And one can't not mention the enormous number of poor, sick and illiterate men, women and children who sleep in the streets all over the city. Jobless, homeless, landless, miserable crowds of human beings. The natives, the old, abandoned and sick people roaming everywhere, all over the country reminding us constantly of their unfortunate fates.

For the last 10 years, as these circumstances became particularly critical, and considering the increasing number of low-income people needing therapeutic assistance, several groups of therapists of different approaches have emerged offering services accessible to those who cannot afford treatment.

Originally seven of us body psychotherapists banded together and created this non-profit organization. As part of our activities we accept clients at symbolic fees, we run workshops and organize events where we reflect on issues related to illness and psychotherapy, we train therapists and supervise their work, and we have created and are coordinating a psychological and music therapy service in an Association caring for children with cancer and their families.

Finally, we are seeking the appropriate financial resources as support to the project of setting up headquarters for the training of therapists and health care professionals, and for the creation of a hospice capable of providing in-residence and/or day-care facilities, and therapeutic and medical assistance and care to medium-and low-income patients.

Hopefully all of this will be materialized in a not too distant future; but for now, we are grateful for this opportunity to share the ideas and experiences which have benefited us with great moments of learning.

Rio de Janeiro, Brazil, October, 1996.