For the last 5 weeks of her life, Mary suffered. Her dementia had progressed to the point where she was violent and forced to be hospitalized. She was in tremendous pain and suspicious of those trying to help her.
Mary had forgotten who her daughter was, even though her daughter spent 4 or 5 hours with her every day. She could no longer remember how to talk on the phone, or do almost any other ordinary activity.
In her last weeks, she started to refuse to eat or drink, thinking that she was being poisoned.
The hospital started her on a course of pain relief and asked Mary’s children if they should start with a feeding tube or IV for nourishment and hydration.
Luckily, Mary’s children had the benefit of a statement Mary had written during her life that covered this situation. Mary had been clear that she did not want her life extended under these circumstances and her children were able to instruct the hospital not to take life prolonging measures but to keep her as comfortable as possible.
Many children are not as lucky. In spite of the publicity around the now famous Terri Shiavo case, where family members fought for 7 years about life ending issues, some people still have not given much thought to living wills or advanced directives.
Of equal importance is that studies have shown that standard advance directive forms do little to influence end-of-life decisions without informed, thoughtful reflection about your wishes and values, and personal communication between you and your likely decision-makers.
It is completely understandable that most people do not want to spend a lot of time thinking and talking about these issues.
However, there is no doubt that discussing these issues ahead of time will result in better outcomes for you and your decision makers.
Mary’s son and daughter both said that without clear instructions, they would have been inclined to keep their Mom alive and would have given the hospital permission to start feeding and hydration. Mary’s lawyer said later that this would have been completely against Mary’s wishes.
The bottom line is that no matter what you would like to see happen for yourself, the best thing you can do for you and your family is to make your wishes known. Your thought process can be guided with our help and likely the input of your physician.
You may also benefit from the free Consumer’s Tool Kit for Health Care Advance Planning provided by the American Bar Association.
The keys to success in this area are thoughtfulness and communication. There is no time like the present to take action. Make your wishes known and be sure your decision makers are fully prepared to carry them out.