Using quality of life judgments to limit care
So here's a recent example of how prejudice against someone's quality of life effects the care they receive - a 3 year old with mental disabilities was initially denied a spot on a kidney transplant waiting list. The physician who made this decision apparently felt that her quality of life did not justify the expense of the procedure. Goes back to my previous column re. quality of life - we shouldn't judge someone else's quality of life to be so poor that it should be ended. "Life is life" - no matter how an outsider might perceive it, the person living that life generally wants as much of it as they can get. Click on the link below. Thoughts?
http://www2.timesdispatch.com/news/2012/jan/19/tdmain06-disabled-tot-denied-transplant-ar-1621976/
http://www2.timesdispatch.com/news/2012/jan/19/tdmain06-disabled-tot-denied-transplant-ar-1621976/
Because of Huntington's my mom was in a nursing home for the last several years of her life until she finally passed away from pneumonia at 61. All she ever wanted was to come home, but my family simply wasn't financially or physically able to do that for her. As the disease progressed she was bed ridden, couldn't feed or dress herself. And she was only in her 50's when all of this happened. She needed 24/7 care and a nursing home was the only way we could provide that. So having said all that I've spent a lot of time in nursing homes as her caretaker and daughter. I can tell you that many old, disabled, dieing people are left in homes with little to no family contact. I saw a lot of lonely, loving people whose day would have been made by a smiling familiar face. Some people work there simply because they need a paycheck, but my mom also had some nurses over the years who were a blessing. They were kind, understanding and became the rocks I leaned on to be able to sleep at night and know that she was cared for. I'm not sure this exactly answers your question, but it's another perspective. Life at any and all costs is not easy. It is hugely complicated for the family and the patient. I also believe that we are loved by a true and graceful God and I am not convinced that life at any and all costs is in his plan for us. We should be able to die with dignity, in as little pain as medically possible, surrounded by the people we love to leave this place in peace so we can (hopefully) fall into the arms of the ones waiting for us on the other side.
ReplyDeleteThanks so much for your comments - your experience encapsulates much of what it means to be a patient and caregiver in the nursing home. I agree that many times we (families and physicians) focus on quanity and not quality of life to the detriment of the patient. But we always must be aware that we have prejudices that tend to undervalue another person's quality of life, especially the chronically ill or disabled. I feel that the best approach is to let the person themselves tell you whether their quality of life is sufficient to continue to support it. The next best approach is, as their surrogate, assume that *if they are sentient*, then they would like to have their life continued regardless of financial considerations.
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