Florence Wald

by Siegfried Othmer | December 2nd, 2008

The death of Florence Wald at the age of 91 is a moment to reflect on the extraordinary change she has worked as a pioneer of hospice care. As a Dean of the School of Nursing at Yale, Wald was troubled by the exclusive focus on cures, with little regard for the wishes of the patient or his or her family about ongoing care. She became acquainted with St. Christopher’s, the first hospice in England that was established by pioneer Cicely Saunders. After quitting her position and spending time at St. Christopher’s, she then established the first hospice in the United States in 1971, which in time became the model for hospices everywhere.

Wald had a larger vision, however. “Hospice care for the terminally ill is the end piece of how to care for patients from birth on,” she wrote. It is this vision that needs to be carried forward, and that has particular implications for us in neurofeedback. In hospice care we have a more balanced view of the needs of the patient. The focus is on maximizing the quality of life rather than mere avoidance of death. It involves the family fully, and relies on home care as much as possible. In this setting, there is a softer boundary between the care givers and the care consumers.

Our work is entirely concerned with the maximization of function, and we rarely get dragged into serious life and death issues. We occupy the soft boundary between formal medicine and the realms of rehabilitation and of education. On the larger stage, we impinge on the culture at large, and even on the spiritual realm. Our work is relevant to all life stages. With hospice care as one model, we need to find a way to integrate our work organically with medicine, on the one hand, and with the ordinary life of the individual, on the other. For that, we need a non-pathological model for neurofeedback. The boundary between the well and the ill needs to be softened in our conceptions.

We are seeing the softening of boundaries everywhere when it comes to neurofeedback. Diagnostic boundaries are largely irrelevant, first of all. The technique of neurofeedback can be helpful across the board. In fact there is more to work with in functional brains than in dysfunctional ones. Further, we have no idea how well people are able to perform until their brains are trained. And in the sphere of our values and of public policy, people shouldn’t have to qualify for access to better function by being sufficiently dysfunctional.

The boundary between the professional and the laity is also softening when it comes to self-regulation technologies. Once people become aware of the potential of self-recovery, they can quickly become expert on their own needs. In hospice care, resources are drawn from far and wide, with maximal reliance on the individual and his or her family. In neurofeedback, we can do the same. We can move toward an integrative model in which the neurofeedback practitioner remains a distant presence in the person’s life throughout all the life stages, while the primary reliance of the individual is on techniques where mastery is being maintained autonomously.

Nutrition is a model here. People seek advice from a wide range of sources, but largely make their own decisions with regard to what vitamins and supplements they take. Some of these choices are informed by medical tests, and are subject to medical guidance. A more professional assessment of nutritional status and needs would undoubtedly improve the situation for many. Another example is cardiology, where the abiding message from the cardiologist is that heart health is largely under the person’s own control, via exercise and diet. A third example is physical fitness training, where the medical authority plays only a distant, supportive role.

The boundary between neurofeedback approaches is also softening. There are undeniably many pathways to self-regulation. This also means the dismantling of the historical boundary between the “central” training of neurofeedback and the “peripheral” biofeedback modalities. The distinction no longer holds up.

The downside of all this softening of boundaries is that neurofeedback will be trivialized within procedure-based, diagnostically focused Medicine just as biofeedback has been over the last few decades. But we are long past the time when we counted on the field of medicine to become a bulwark for the acceptance of neurofeedback in any event. “Medicine” will accommodate us reluctantly. The paradigm of health care will shift from below. Significantly, Wald had to step out of her powerful position at Yale to actually get innovation done. Inside the system, it is difficult to get more than creeping incrementalism.

What will make the difference this time is that there are so many confirming voices now that were not there before, from the field of brain-computer interfaces, cognitive neuroscience, and of cognitive rehabilitation by other means. Brain plasticity is no longer a foreign concept. Medical professionals no longer wince when the notion of training brainwaves is broached.

We will also be aided by the fact that the consumption-based economy is fraying at the edges, giving opportunity to the caring-based or bottom-up economy. A full deployment of self-regulation technologies across our society could add a whole percentage point to GNP, for those who still count such things. That would be no more than we currently spend collectively on physical fitness, lawn care, and flower arrangements. The impact on quality of life in our society would be much greater. In terms of overall GNP, the net effect of neurofeedback could well end up being negative over the long term, if we count the avoided costs of educational failure, of drug addiction, of medical care, and of maintaining people in prisons. But by the time that happens, we should be judging our society in quality of life terms anyway. The consumption czars will hopefully no longer be in charge.

Recently someone lamented the lack of exposure to psychology as part of basic secondary education and as part of any liberal tertiary education. An even greater concern should be the absence of any teaching with regard to self-regulation. It is even deficient within psychology itself. Our largest impact as an emerging discipline right now is probably the education of a significant sector of our population in the potential of self-regulation. This effect is cumulative, and as a result neurofeedback will quite simply become a fact.

Siegfried Othmer, Ph.D.

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