COMMUNITY AND GLOBAL HEALTH IAPOP CONFERENCE 24-27.02.2010

1. COMMUNITY AND GLOBAL HEALTH IAPOP CONFERENCE24-27.02.2010 WORKING WITH PATIENTS IN COMA AND THEIR FAMILIES The Healing Role of Contact and Communication in Different States of Consciousness Dr Bogna Szymkiewicz

2. The story unfolds... 2007/8 - Coma class at Process Work Academy - Individuals working with coma clients 2008/9 - „Friday’s Discussion Club” on coma and states of consciousness - Coma workshop in Warsaw – Gary Reiss - September 2009 – Conference „There is Life in Coma” organized by Światło Foundation in Toruń • Internship for Process Work Students at „Caritas” Care Facility and Hospice • Project at Child Health Center with „Akogo” Foundation

3. Conference „There is Life in Coma”-September 2009 Conference „There is Life in Coma” September 2009 Topics included: Brain and its potential Ethical aspects of life in vegetative states Contact and consciousness in coma Rehabilitation of people in vegetative states Organization of care for people in vegetative states Sleeping sexuality Toruń – „Światło” Foundation • Care facility for people in coma (24 beds) • Raising awareness around Coma: - publications - conferences - exhibitions - theatre performance

4. Working with „Caritas” PROJECT 1: We organize internship in „Caritas” Long-term Care Facility and Hospice, with a special ward for people in vegetative states Expectations from the organization: • To bring in new methods of work • To show the possibilities of contact • To help changing attitudes towards people in coma • To spend time with the patients • To give support to the main caregiver • To do some family work Implicit: • To do some organizational work • To help finding the meaning and value of the work

5. „Caritas”Internship for Process Work Students Internship program: • Introductory workshop (preparation) • Individual plan of the visits (one client for each students) • Monthly supervisions • Meetings and lectures for staff and families (medical professionals being very open to learn new methods of communication) • Plans: to work with the organization Students experience: • Deep contact and connection with patients • Finding place were it is possible to connect on the Essence(Process-mind) level • Questions: what am I really doing, what am I needed for

6. „Akogo” Foundation –Ewa Błaszczyk PROJECT 2: We work for „Akogo” Foundation, which is now building the first model clinic for children in coma in Poland: - for children with severe brain injuries (15 beds) - up to 18 months after the accident - individualized program put together by physicians, therapists and parents Activities of the Foundation: • Web site that helps parents finding information (disorders, therapies, specialists) • Advertising new medical achievements and therapeutic methods • Social and educational fields, calling the public's attention to the problem

7. OUR PROJECT Polish Process Work Association & „Akogo” Foundation Psychological support for the families with children after brain injuries • Psychotherapy • Coma Work • Visiting families at homes • Workshops and lectures • Free phone line (in progress) The project is conducted at Pediatric Rehabilitation Ward in Child Health Center Hospital (the coma clinic will be connected to the hospital)

8. Polish Process Work Association & „Akogo” Foundation1. Psychotherapy Individual meetings in the hospital Meetings with the families in the hospital Consultations in our Psychotherapeutic Center Conversation about future plans and organizational support Our team in uniforms with the logo of Polish Process Work Association

9. 2. Coma Work • Introducing the basic elements of coma work to parents / caregivers • Working with the child (if the doctors and parents agree) • making contact • following the child • adding the attitude of no expectations • searching for the clues from the Dreaming • looking for meaning: messagas from the Dreaming in the context of the family • family interventions • Supervisions and team meetings

10. 3. Visiting families at homes • Teaching coma work at home (visiting families who take care of a person in coma at home once or twice – explaining and demonstrating the basics of coma work) • Family consultations after hospitalization: • continuation of contact and support • meeting with other family members (ex. siblings) • interventions around special problems (ex. domestic violence) • family therapy Plans: support group for parents residential workshops/ holidays

11. 3. Workshops and lectures for medical staff • Open lecture about Coma Work and stress (with Gary Reiss) – November 2009 • Workshops for physicians, nurses, rehabilitants • creating opportunities to work with organizational issues • teaching basic psychological skills • Interpersonal communication • Criticism-giving and taking • Coping with stress • Burnout • Teamwork • Non-verbal communication with clients • Conflict resolution • Rank and hierarchy in organization

12. 4. Free Coma phone-line Goal: to provide on-going support to the families with people in coma • data-base – information concerning local agencies, rehabilitations centers, medical professionals, possible financial and social support • basic clues about coma work • maintaining contact with families met at the hospital or during family visit • possibility to talk to someone who understands issues of coma and long-term care Format: 2 hours 2 x week Psychotherapists from Polish Process Work Society

13. Contact and communication on three levels of reality EMERGING CONSCIOUSNESS ------------------------- CR Consciousness Sentient awareness LEVELS OF PERCEPTION -------------------------- FORMS AND CONTENT OF CONTACT AND COMMUNICATION ----------------------------------------- Patient- signal work Family - social/ financialaspects Hospital – rules and procedures Society – social awareness Patterns: stories, images, metaphors, fairy tales, music movement, symbols Meditation Process mind

14. Awareness and Consciousness Conscious From Latin conscius 1. having joint or common knowledge with another; 2. conscious to oneself Conscientia - knowledge-with; shared knowledge Awareness of being aware Arnold Mindell - „deals with parts and with their connection to one another” „awareness of consensual signals, rooted in dreaming and quantum flirts and created through the self-reflection of these NCR experiences” Aware • From a-ware - „wary” – cautious, alert, attentive • Human's or an animal's perception and cognitive reaction to an event • Informed; alert Arnold Mindell - • automatic process of perception • tendency before self-reflection or consciousness • noticing, reacting, perceiving • base for all the experience

15. Helping the „I” to emerge Martin Buber : „Through the Thou a person becomes I” „When two people relate to each other authentically and humanly, God is the electricity that surges between them.” Józef Tischner: „...encounter with another person is at the beginning of any experience of the world” Ronald D. Laing: „I” emerges during the process of being corroborated /acknowledged by others

16. Contact and communication with people in Coma Contact in itself is healing: • Helping out a person who is stuck in loneliness in the formless realm of experience • Supporting the „I” to emerge from the Essence level through the Dreamland to Consensus Reality (helping the „I” to find way home) • acknowledging subjectivity and autonomy • helping to create a new coherent personal history, including experiences that were outside the previous identity • helping to the integrate parts, past/present/future and other aspects closer to CR • Acknowledging the value of NCR experience

17. Essence • Waking up to the mystery of life, human being, consciousness • Meditation and other forms of contact through Processmind • Unfolding the Mystery: what is happening „down (or up) there”? • Elaborating the „Essence language”, description of the non-local experiences (science, media, art)

18. Dreamland • Working with client on symbolic aspects of what is happening • Discovering patterns by connecting the signals from the client, our own experience and information from the family • Who’s helping whom: therapists, clients and non-local experiences

19. Consensus Reality Billboard by „Akogo Foundation” „50% people in coma are conscious BUT WHO CARES?” a. Organizational and legal level: institutions, rules and regulations, procedures, rights of the patients b. Social consciousness: how to introduce the value of different states of consciousness in society? c. Communication with professionals and families

20. Communication with families and professionals – some ideas Helpful attitudes • acknowledging the responsibility and leading role of a physician • making sure there will be no harm (in a medical language) • differentiating between „observable evidence” and „subjective experience” (taking the role of an authority when talking about subjective experience) How to explain what we are doing? • Referring to the brain and using „objective” language: ex. we help to create or activate newconnections in the brain • The idea, that consciousness is reflective and we are serving as an external awareness • Explaining that we are helping the person to feel more in control by following his/her signals (rather than giving orders)

21. Questions How to talk about other levels of reality? ( concepts of „soul”, „states of consciousness”, how people react to it ; the need for stories, evidence, art ) How to help the main helpers to redefine their role? (often mothers give all the attention to a child in coma,they are demanding and pushing ; ex. shifting focus from the child in coma to the family as a whole) How to help to elaborate a new narrative for medical professionals, especially doctors (the meaning of medical help in long-term vegetative states, the definition of success)

22. Polish Process Work Association: Plans for the future • Main role in creating the model of psychologicalsupport in the „Alarm Clock Clinic” • Developing cooperation with „Caritas” • on-going internship • workshops and seminars for staff members • Publishing anthology „Mysteries of communication” • Making a short movie about coma practice (signal and family work) • Creating a certificate program for Coma workers

23. Photo-pictures: Klaudia and Stanisław Winiarscy, „Sleeping Stories”