This is something I've wanted to address for a long time, it is an important issue and I'm not trying to solve it, just to address it.
(image grabbed from http://www.utoronto.ca/qol/)
People come in all shapes, sizes and colors. They have many different religious beliefs, political beliefs, socio-economic situations, education levels, talents and abilities. They live in cities, suburbs, small towns and rural areas. I am an overweight middle-aged middle class white woman with a graduate degree living in the middle of a big City. Do I have the same interests as a slender young Asian male with a high school diploma living in the suburbs? Probably not. Is my life better than his? I might say yes. He might say no. We would both be right because neither of us is in a position to judge the quality of the other person’s life.
The quality of an individual’s life is subjective. It is unique to that person. Nevertheless, quality of life is measured all the time. These measurements use objective criteria and apply it generally to make a determination. We hear Magazines and surveys rate places on their “quality of life” score. For places that seems to be a combination of the weather and the number of universities and opera houses in the vicinity. The objective criteria, the weather and the arts – are predictors of the quality of life, because presumably most people want nice weather and access to the arts. However, if you like rain and hate opera that measurement does not mean much to you. Maybe you choose to live in a place because you ran out of gas in that town and found a job there. Turns out the people were nice and you made a life there. You still decide what brings quality to your life.
Applying the objective criteria in a magazine survey is harmless and fun to read – especially if your area makes the “best” or “worst” lists. There are other areas, though, where it can be dangerous. When individuals or institutions decide from an objective standard that your quality of life is not good, and they have the power to affect your life, the results can be disastrous. I am talking, of course about healthcare.
There are legitimate “quality of life” issues in health care. Healthcare providers and patients will address quality of life issues in making healthcare decisions. If a treatment will take pain away a patient’s quality of life may improve. It is an important factor for patients to consider in deciding whether to undergo treatment. It is the patient’s unique life. Only the patient knows what the quality is and what will improve it.
Yes. Some things are obvious. Less pain will increase almost everyone’s quality of life and it is safe to make that assumption. Many things are not so obvious. Other circumstances will have an impact. Taking the drivers license away may have less of an impact on the quality of life of a person who lives in the city with easy access to public transportation than it will to a person who lives alone on a farm. It depends on the individual. It depends on the life they are living.
I can safely say that most people would not want to be in Maggie’s situation. She is totally dependent on others for every need. For most of us that would be a devastating and unacceptable change in our quality of life. For Maggie, though, THIS IS HER LIFE. It is the only life she has ever known; and I can tell you first hand, the quality of her life is different from yours and mine, but it is great. She is happy, loved, comfortable, pain free, smart, educated, engaging and entertaining. Often times I envy her for the joy in her heart.
People do not know that to look at her. They do not see the joy (unless they wait 30 seconds). They see the wheelchair. They see the trach. They do not see Maggie. If they did, they would know. Maggie is joyfully living the life she was given. She is living it to its greatest potential. If that is not quality, I do not know what is.
There have been several instances where doctors do not want to treat her based on her quality of life. They measure her life by their own subjective criteria and find it unacceptable. It is snobbery. It is bias. It is discrimination. Then Maggie does something to surprise them. She smiles or makes a crack on her dynavox and they look at her from a different angle. Generally, it takes them about 10 minutes to realize the mistake they have made. (The braying mother in the background may help or hurt – never sure which)
Recently and for the first time one doctor did not change his mind. Maggie needs surgery to address a life-threatening problem and he refused, requiring us to change doctors. He decided Maggie’s quality of life was too low to try to save. He made a decision that Maggie is not worth it.
He is wrong.