Facing End of Life ... and Health Care

Does end-of-life care prolong life or does it prolong suffering? Should it be a part of health-care reform?

End-of-life counseling would have been helpful for my family when we faced decisions about my aunt in the summer of 2008.

My aunt had been a bright, feisty, charming, full-of-life woman who had faced and conquered many challenges during her lifetime. By the summer of 2008, she was in final stage-Alzheimer's with a feeding tube going in and a Foley catheter going out.

When her husband and life-partner died in the mid-1990s, she started her way down the Alzheimer's path. In 1999, her sister moved her from Miami to rural NC, to ensure that she was looked after by a loving family member. A noble effort but it could not stop the ravages of Alzheimer's. My aunt continued to recede into childhood, so that by the summer of 2008, she was a bedridden infant. In final stage Alzheimer's she had little, to no, recognition of anyone. She did not even have the curiosity of a baby, all of her brain functions, almost completely gone.

The nursing home, despite their best efforts, could not turn her enough to prevent her heel from becoming infected. The infection would not heal. She had to be taken to the hospital for treatment. The hospital could not stop the infection, it was spreading into her ankle. She would lose her foot.

The trip to the hospital caused my aunt to stop eating. I have since realized that trips to hospitals for Alzheimer's patients are like pushing them down into a dark, frightening hole. A decision needed to be made. My aunt was in the care of the county, they had become her guardian in 2004, when her sister was unable to maintain my aunt's care. I believe the county policy was to not have a feeding tube inserted, however they knew that there was concerned family, so they called me.

My husband and I have instructed each other not to use extraordinary measures to keep either of us alive to live in a vegetative state. So our response was no feeding tube. I believe that my aunt, if she could have stepped out of her situation would not have wanted to be this body-attached-to-tubes. However, I did not feel we had the right to make that decision alone. So I told the county Social Services to check with others and I also told Social Services, that I would not argue if the other's decision was for a feeding tube.

Others wanted the feeding tube, so my aunt is alive today in something very close to a vegetative state. I understand she smiles occasionally and sometimes opens her eyes, when called. The hospital removed her leg above the knee to make sure the infection would not get into her body.

We faced the feeding tube question and as individuals, we had mixed feelings. I believe quality of life is important. Others think life in any state is important.

Ultimately God is in control. However, I think the only 'winner' here is the nursing home: they get her Federal Social Security check plus NC Medicaid payments, while providing minimal services.

As a fiscal conservative, I think this current health care system is speeding over a cliff, when the federal and state governments are paying big $s to nursing homes without any hope of some of the patients getting better! I would rather use that money to pay the health care costs for someone whose life would be improved.

Oh yes, to my original question: regarding my aunt's life, her end of life care is not providing her with quality life and it is not reducing her suffering, because she is not suffering. If anything, it is prolonging the suffering of those around her, who are reminded daily of her loss of vitality.