Hospice Care

Process Oriented Hospice Care refers to a body of theory and practice for psychotherapeutic work with patients, families, and professionals in the middle of near death experiences including comatose, vegetative, and other highly withdrawn states of consciousness. It was developed by psychotherapist Arnold Mindell and is an extension of Process Oriented Psychology (“process work”) It is based on observations by Arnold and Amy Mindell (1989, 1998) and others (Owen 2006, 2007) that patients who appear non-communicative according to the usual neuropsychiatric diagnostic criteria (Posner 2007) still experience the world around them and are capable of communicating using subtle, often barely detectable nonverbal signals.

Patients in comatose states have traditionally been considered by mainstream medicine to be victims of pathological processes that curtail normal cognitive and communicative functioning. Modern research suggest that patients may display “islands” of consciousness in even persistent vegetative states. Nevertheless, the range of comatose and vegetative states described by medicine are thought to be without intrinsic meaning, and the experiences of their victims without significance.

Since by definition, the patient is incapable of understanding, thinking about, or communicating about his or her own condition, this view precludes the participation of patients in their own care. Decisions of whether or not to maintain life support must be based on consensus of medical opinion, input from the patient’s family, and any pre-coma statements of the patient in the form of living wills, advance directives and the like.

Coma work, because it focuses on and amplifies whatever residual ability the patient has to perceive, think about and communicate about their own condition, makes patients active participants in their own care, as well as in decisions about maintaining or ending their lives.’

Amy Mindell (1998) reports on the Mindells’ first case which was to form the foundation for their subsequent development of coma work. In 1986, they worked with a man named “Peter” who was dying of leukemia. Arnold Mindell (1989) describes this case in his book, “Coma: Key to Awakening” . The Mindells applied the methods of process work to Peter in varying stages of his illness, right up to his comatose state just before death. Their experiences formed the foundation of the methodology of coma work.

Coma work begins with the attitude that the comatose patient is capable of perceiving and relating to outer and inner experience, no matter how minimally. The coma worker therefore tries to discover what communication channels are open to the patient, and then to use these channels to relate to the patient’s experience. Channels of communication may be identified by noticing small, sometimes minute signals in the form of movement, eye movement, facial expressions, and vocalization by the patient. The coma worker then attempts to interact with the patient by interacting with and amplifying these signals.

During the interaction, the coma worker is guided by feedback from the patient. For instance, if the coma worker joins the patient in vocalizations, perhaps adding a bit of extra modulation, the patient may respond by changing his or her own vocalization. In addition, the coma worker may attempt to set up a “binary” communication link, inviting the patient to use available movement, like the movement of an eyelid or a finger, to answer “yes” or “no” to questions.

One common, although often unattainable goal, is to have the patient awaken from the coma. Although this has been known to happen as a consequence of coma work interventions, it is not the ultimate goal of the work. Additional goals are to help the patient communicate in whatever way is open to them, as well as to facilitate the patient’s participation in decisions regarding his or her care and ultimately, maintenance of life.

Amy Mindell distinguishes between two ranges of interventions: those usable by family and friends of the patient, and a more complete set of interventions to be used by the trained coma worker.

Coma work has been used with patients in comatose and persistent vegetative states. It is particularly useful in working with patients near death, since it permits patients to make decisions about, for example, the tradeoff between the amount of narcotic medication they receive against the clouding of consciousness they may experience as a result of these drugs.

Disputes regularly arise around the proper way to treat patients who have been rendered unresponsive – in comnatose or vegetative states – through injury or illness. When medical examination reveals apparently irreversible brain damage, emotional, family, and medical opinions may come into stark conflict. Occasionally, such cases break through to public awareness, as was the case with Terri Schiavo. Schiavo had been in a persistent vegetative state since 1990. Her husband and her family engaged in a long battle over whether to remove her feeding tube, which would result in her death. Her husband prevailed in 2005, leading to Schiavo’s death in March 2005. A key factor in the legal battles was the inability to discern Schiavo’s preference – to continue living or to be allowed to die.

Recently doctors in England and Belgium (Owen et al., 2006, 2007) found signs of awareness in a brain damaged woman who was in a so-called vegetative state and ‘outwardly unresponsive’. When doctors asked the patient to imagine playing tennis they saw peaks of activity in the premotor cortex part of the brain that mimicked responses of healthy volunteers. The same thing occurred when they asked her to imagine walking through her home. These studies and others using functional imaging techniques have documented islands of awareness in patients who showed no outer signs of consciousness. They demonstrate that there may be more going on in terms of patients’ self-awareness than are evident from routine clinical examinations. One conclusion is that a person may be aware even in the absence of obvious outer signs of this awareness.

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