This post is about an article written in 1972 - "The Dignity of Risk and the Mentally Retarded."
I have the privilege of serving on the ethics committee of the Commonwealth Care Alliance (CCA), a consumer governed, not for profit health system that cares for people with complex medical and psychological needs who are covered by Medicaid or "dually eligible" (for both Medicare and Medicaid). CCA tries to help its patients live in accord with their values, which often means helping people with significant impairments live in the community.
This can involve risk. A frail elder who lives alone may fall. A young adult with developmental disability and spasticity may aspirate and choke. If the elder loves her apartment, and the young adult takes great pleasure in his meals, clinicians and family members have to ask - how much risk is acceptable?
Bob Master, an internist who has been caring for vulnerable and neglected populations for decades and co-founder of CCA introduced me to the concept of "dignity of risk." Like all really good ideas, it seems obvious.
Robert Perske introduced the concept in his 1972 article. (The article is available on his website.) At the time he was Executive Director of the Greater Omaha Association for Retarded Children. After visiting programs in Denmark and Sweden, Perske wrote about the potentially negative impact of the natural wish to protect those with retardation:
...overprotection endangers the retarded person's human dignity and tends to keep him from experiencing the normal taking of risks in life which is necessary for normal human growth and development.In retrospect I realized that I'd applied the dignity of risk concept throughout my psychiatric career, though not by that name. As an example, meeting with a patient with schizophrenia and his family, if the patient had behaved in a rude or inconsiderate manner, I might say "Just because Joe has schizophrenia doesn't mean that he won't sometimes act like a complete jerk the way the rest of us do." The Joes of the world generally preferred being criticized for acting like a jerk rather than being indulged as an impaired person who couldn't be expected to do better.
The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. Mentally retarded persons may, can, will, and should respond to risk with full human dignity and courage.
It is the author's firm belief that we now need to insure this dimension of human ignity for the mentally retarded and prepare them for facing real risk in a real world. Where many of us have worked overtime in past years to find clever ways of building the avoidance or risk into the lives of the mentally retarded, now we should work equally hard to help find the proper amount of normal risk for every retarded person. It is hoped that this paper has helped to illustrate that there can be such a thing as human dignity in risk, and there can be a dehumanizing indignity in safety!
Suicidality posed a tougher challenge. A patient with acute suicidal intent accompanied by a plan, available means, clinical depression, and a history of suicidal acts obviously requires hospitalization. But some people with chronic depression are chronically suicidal. The goal - curing the depression - can't always be achieved. What then? The situation required assessing with the patients and their families what their goals for life were and how much risk they were prepared to tolerate. Sometimes living with a recognized risk seemed better than making elimintion of risk the primary goal.
Doctors and nurses in the CCA program deal with trade offs between risk and quality of life on a daily basis. The Hippocratic precept - first, do no harm would seem to imply a very cautious approach, but only until we consider Perske's comments about the potential for human dignity in risk and the risk of dehumanizing indignity in safety!