Date: Sun, Mar 3, 2002 5:05 AM
From: Jean E. Miller
You asked: Should quality of life of a patient be a factor in medical decision-making
and if so should physicians and health care workers ever make such an evaluation?
My Response: Having been the primary caregiver for my daughter Kelly, who had Juvenile Huntington's
Disease for 15 years, there were instances where the health care profession felt their evaluation of her quality of life outweighed
any personal choices she may have designated.
Before she was fired as her primary physician, one doctor tried to force her opinions and surgical recommendations
(feeding tube) on my daughter and continually harassed me with horrific descriptions of Kelly's death that she said I would
be responsible for by denying Kelly her recommended treatment.
It was several years later before Kelly actually needed a feeding tube (age 27). When the (new) doctors explained,
with compassion and sensitivity, that she was at a cross-road of choosing life or a gentle death, after careful consideration
Kelly chose LIFE.
At that young age, Kelly fought to live with every fiber of her being. In the last year of her life she was
constantly bedridden, unable to communicate and required 100% total care.
Although HD had disabled her physical body, her cognitive/mental abilities were intact. Her ability
to still ENJOY life, through the loving care she received, was obvious to everyone who saw her. Kelly's eyes would still twinkle
in mischievous delight, her laughter still rang out, and with patience and love her needs were determined. She was alert and
attentive to things around her, still enjoying company of the friends that remained, her favorite TV programs, etc.. It was
only during the last few months of her life that that sparkle and quest for life ebbed from her eyes and whether she and/or
God chose the timing, she died very peacefully when she was ready.
My suggestion to other Huntington's Disease families is to urge them to do as much advanced planning as possible
in letting the person with HD select the choices they want in their care as the disease progresses through the end stages.
To support them in these decisions I put most of the resources I had on this subject onto a webpage called "Our Final