Coma, A Healing Journey: A Guide for Family Friends and Helpers

1999 Lao Tse Press, Portland, OR, 330 pages, with illustrations, paper $26.95

Reviewed by Pierre Morin, MD

Our public health is predominantly influenced by technical progress. Thanks to this, more people who previously would have died soon after their brain injury, heart attack or stroke can be kept alive. The flip side of this is that survivors can be maintained in unconscious states or coma for longer periods. The ethical dimension of this human misfortune has gotten broad public attention resulting in research leading to new ways to help and treat people in comatose states.

In Coma, a Healing Journey, Amy Mindell shares with us her wide experience in this challenging field. Her work is based on pioneering research by herself and her husband Arnold Mindell (Mindell, Arnold: 1984).

In Part I of the manual, Dr. Mindell provides us with an overview of the different attitudes and concepts of coma through history, different cultures and today’s medical mainstream. She then develops the theoretical bases of the process oriented approach to comatose states (see also Mindell, Arnold: 1984). In addition, she proposes a new ethical understanding of altered state of consciousness. Parts II and III constitute a practical manual for establishing communication with those in coma for family members, health care professionals and helpers.

The author’s main theme and concern is that people in all states of consciousness go through potentially meaningful inner experiences. For instance, the clinical diagnosis of persistent vegetative state (long-term coma) is normally seen from a viewpoint of pathology, which is based upon a mechanical concept of disease. Amy Mindell’s challenging new viewpoint is more phenomenological. She considers coma, like any other altered state of consciousness, an attempt to widen our personal identities. In contradiction to widely accepted medical philosophy, she postulates that the potential for awareness still exists as long as the heart is beating. On this premise, it is of enormous value for the person in an altered state that the caretakers drop their neutral observer position and try to connect with the patient’s inner experience.

Amy Mindell believes that we lack sensitive communication techniques that would allow us to better understand the patient’s comatose state and experience. In this sense, the manifold exercises shown in the second and third part of the book are meant to broaden our knowledge of comatose states. They help us to develop the skills of joining the comatose person’s inner experience. Demonstrated with carefully chosen illustrations (beautifully created by Robert King), she shows the interested reader how to communicate with the comatose person, and how to respond to his minimal signals and feedback.

In the third part of the book, which addresses professional helpers, she provides more detailed explanations for developing skills and techniques. These include bodywork, movement, and an additional chapter on specific skills for working with brain-injured patients. Both sections provide relatives and caretakers practical and sensitive methods of communicating directly with those in coma. Highly instructive, they provide a unique tool for teaching health care professionals.

As a former assistant medical director of a rehabilitation clinic in Basel, Switzerland, specializing in treating brain injuries, I had the opportunity to implement the author’s concepts and skills in the therapeutic program. It had a very beneficial effect on the patients, the family members, and the professional helpers. With our increased awareness for minimal signals and the patients’ feedback we were able to improve our diagnostic abilities. We discovered for example, more “locked in” conditions (a situation where the patient is completely paralyzed while his cognition still functions), which we would have overlooked without these new communication techniques.

Establishing a binary system of communication was especially helpful. Binary means that the comatose person can answer your questions with either a “yes” or “no” response using a previously defined movement of any part of the body, such as an eyelid, the mouth, or a finger. The lack of these communication skills could also explain some reports of misdiagnosing PVS (persistent vegetative state) in medical literature (Rosenberg, 1977 and Steinbock, 1989).

The family members of comatose patients in our clinic felt supported in finding ways to relate to their loved ones. They felt less isolated and had a better chance to stay in a bonding relationship with their relative through body and movement contact. The professional helpers found themselves having fewer burnout feelings. They were relieved of having to fight against the heavy impairments of the comatose patient’s state. They were able to develop an idea of the patient’s inner process and could follow him or her. Furthermore, double-state ethics (see below) helped us to make more informed decisions about prolonging or withdrawing our medical interventions.

In 1990, the US Congress passed the “Patient Self-Determination Act,” which was designed to give patients more control over their destiny by the means of advanced directives such as living wills. Amy Mindell proposes in her book a double-state ethic. She believes that it is our ethical responsibility to consult not only the person’s prior wishes and the current wishes of family members and medical staff about life-and-death decisions, but also to make every attempt to ask the person in coma. From a normal state of consciousness, highly altered conditions like coma are seen as pathological and represent poor quality of life. The author’s experiences show her that people in coma often have significant experiences. When asked through binary communication, some of them respond that, in contradiction to their former statements, they still want to continue living. Others express their wish to die.

In a recent volume of The Lancet, English scientists reported the successful detection of brain function (visual recognition of familiar faces) in a 26-year-old woman who was in a persistent vegetative state and who was otherwise unable to respond to any external stimuli (Menon, 1998). This documents that our knowledge of coma and non-ordinary states of consciousness is very limited.

I believe that our understanding of coma is affected by our reluctance to think about our own death and therefore biased. Our tendency to marginalize dream like experiences and altered states brings us to project our own fears onto these unknown states. The actual problems around “Right to Die,” physician-assisted suicide and coma will therefore, from my point of view, not change until the medical profession and society at large renew their thinking about dying.

Amy Mindell’s book offers an incomparable chance and help to take a first step towards the reform so badly needed. It is also a helpful tool for everybody engaged in the education of health care professionals.

References:

Menon, D.K. “Cortical Processing in Persistent Vegetative State,” The Lancet 1998, Vol. 352: 200.

Mindell, Arnold. Dreambody. London: Routledge & Kegan Paul, 1988.

Mindell, Arnold. Coma, Key to Awakening. Boston: Shambhala, 1989.

Rosenberg, G.A., Johnson, S.F., Brenner, R.P. “Recovery of Cognition After Prolonged Vegetative State,” Ann. Neurol, 1977; 2: 167-168.

Steinbock, B. “Recovery From Persistent Vegetative State? The case of Carrie Coons,” Hastings Cent. Rep. 1989; 19: 14-15.