With the advent of advanced medical technology both the public and the medical profession are faced with decisions affecting the “quality” of one’s life. Most often this in terms of removing a patient from life support systems or withholding heroic life saving measures. At other times families must decide if their loved one with severe Alzheimer’s disease or dementia should undergo surgery or receive medications that extend one’s life. As physicians we are frequently asked, “will it change their quality of life?” Jacob Fox, a Chicago neurologist posed a probing question on this topic. He asked that if these patients could be lucid for ten minutes and look at their situation, would they ask to have the support continued?
It is an interesting question, for I know many of us say that if certain conditions were to occur, we would not want to live. We have medical directives that deal with ventilators and CPR, but we never address the issues of severe physical or mental disability. After over 35 years of taking care of people with severe disabilities, I can say that once faced with the disability they do want to live and want the highest quality life possible.
It is these dramatic issues that most often come to our attention, but the majority of issues concerning the quality of one’s life are much less noteworthy but of no less importance. We so often fail to recognize and address these issues for the millions of disabled people in this country. Many lessons can be learned for all of us by examining the factors that affect the quality of our lives. Like most individuals I follow my daily routine at work, attend to my social responsibilities and family needs, followed by a structured program of leisure. We all speak of injecting quality into our lives, but what are the components of that amorphous term?
As an able bodied person I have dreams, desires and aspirations for now and the future. If tomorrow I became disabled would those dreams be any different- not really. Society may believe that people with disabilities don’t want or need the same things as the able-bodied, but they do. It is society that needs to change its view point.
Brian Jennet, a Scottish neurosurgeon, addressed this issue for head injury survivors in 1975. These principles hold true for all disabled individuals and indeed for all of us.
Most of us take for granted the ability to go to the bathroom, bathe or brush our teeth without assistance. I have had patients who refuse to go home because they could not endure the embarrassment of a spouse cleaning them after going to the bathroom. The ability to master and have control over our bodily functions is prime to a sense of mastery over our lives and correlates directly with a sense of self esteem. Few animals survive if they depend on others for food and basic maintenance. For man it is an issue of quality rather than survival. It is for this reason that so much time is spent in rehabilitation on activities of daily living. We take our morning “routine” for granted while the disabled individual may spend months mastering these “basic” tasks; basic tasks that equate with quality survival!
As I sit and feel a sense of thirst, I turn away from the computer and go into the kitchen for a drink of water. I go when I want to go and when I need to go. The disabled person who is dependent for mobility is at the mercy of his caregiver or helpful citizen. In a hospital he may sit in his room or hall until the overworked aide has the time to put him back to bed or take him to dinner. He is no longer on his own time-table, but on that of others, a not uncommon situation for the able-bodied. Independence in mobility is key to the quality of one’s life. If she can propel her own wheelchair or ambulate independently she may be able to live alone. If she can transfer herself from a wheel chair to a commode, she can stay alone during the day. It is for these reasons that we work so hard on mobility.
That which makes us most human may be our ability to form relationships. We may not always form satisfactory relationships, but at least the potential is there. We have peers, colleagues, buddies, lovers, and spouses. Freud described the balanced triangle of life as “to love-to work-to play.” Disabled individuals see the triangle fractured in two ways. Previous relationships may shatter because the foundations upon which they were built have been altered through physical, behavioral or cognitive changes. That which a partner loved most may no longer be present and that which she liked the least may now be exaggerated. The ability to form new relationships may be altered by being thrown into a “new” peer group of the physically or mentally disabled. The friends who visited him in the hospital have now retreated to the “safe haven” of their peer group. The social fabric that was once tightly woven starts to unravel and the “quality” supplied through social relationships is diminished.
If something happened to my wife of 42 years, there is probably someone who would be willing to have a cup of coffee with me at Starbucks. What would happen if I suddenly became disabled? Would the pool of people willing to have a cup of coffee or go on a date change?
Rehabilitation must work to rebuild satisfactory social relationships through social skills groups, peer support groups and community reentry.
Work is the other corner of Freud’s triangle; through it we enhance our self esteem, obtain recognition and develop a sense of self worth. Although there are days when I awaken and dream of retirement, it is at work that I interact with a peer group, develop social relationships and find avenues for “positive strokes.” It is this idea of present day satisfaction that is so important. Most of us have a picture in our mind’s eye of what we should be doing and our capabilities. Once achieved, few are willing to settle for less. Were I to be injured, I would probably not easily settle for less than being the Medical Director of a major rehabilitation hospital. Many injured or disabled workers face this dilemma daily, being asked to assume a new role that is perceived as less important or less interesting. The vocational rehabilitation of professionals presents a special challenge for all of us in rehabilitation, with so many hours spent in the work environment it becomes a major factor in the quality of one’s life.
As I sit here writing this article my mind has wandered to my next vacation or trip, plans for the remainder of the year and for the next weekend. It is these plans that fuel the hopes and aspirations for the future. Catastrophic injuries and illnesses may bring a sudden halt to an individual’s or family’s future plans, for one does not know what to expect. Serious head or spinal cord injuries suddenly change one’s ability to pursue vocational and leisure interests. A lifestyle predicated on intellectual or physical strengths will now need to be modified. A “prescription” for quality will depend on one’s successful transition into appropriate areas that offer fulfilling prospects. It is a role of the rehabilitation professional to direct and to counsel the disabled person into areas that lead to a future of social, vocational and avocational fulfillment.
These are lessons not only for the disabled, but for all of us. It should not take a “near death experience” for us to reevaluate the importance of social and work relationships and to address the priorities in one’s life. We all take these for granted until they are gone-forever.