Advance Directives: Sarah's wishes
Each year, I ask that the newspapers run Sarah’s story. I have spoken about Sarah’s story with audiences all over Colorado. While her name and other insignificant details have been changed, the story has not.
I have the terrible habit of forgetting names, but a face, I never forget; and their stories, they’ll probably live on with me as I do. I’ll call her Sarah. She was young, in her thirties. She had been in a horrific car accident, left a quadriplegic, unable to speak or do anything for herself. She was being kept alive by nasogastric intubation (NG tube)—a feeding tube inserted in her nose. The liquid meals, while keeping her alive, left her more than uncomfortable; she was on a down-slope of constant misery.
Her place of residence was now at a long-term nursing care facility, operated by a hospital. She, like so many of us, had her own story. She didn’t have any family to speak for her. Her only way of communicating was by having a pen placed in her mouth and shuffling-out, hard-to-read scribbles.
With an attorney by her side, her day had come. As best she could, she wrote her wishes, asking that her artificial feedings come to an end, her discomfort come to an end, and she be allowed to start comfort care. Sara was of sound mind, knowingly asking that the regular feedings she received, the dichotomy of her existence, come to a halt and that she receive care to make her comfortable until she could die. The hospital denied her wishes, and they were within their rights. If death should become imminent, even if the patient is of sound mind when making such a request, it can be denied by way of protection.
Sarah maintained that the feeding tube was placed against her will; she never wanted it, and had she known the state of which the accident would have left her, she would have been more prepared, would have made her wishes known ahead of time. The artificial feeding afforded her life. At what cost? That’s to be determined individually. Medically, it would have added fifteen to 2o years to her life. She noted many stomach inconsistencies. She was uncomfortable.
Sarah’s case was escalated to the state supreme court where her wishes were granted. Her NG tube, which provided her regular, artificial feedings, was removed. She was then given small increments of food, spoon feedings, by mouth and medications to make her comfortable.
It’s not my desire to place judgment on Sarah or her wishes. Only to provide comfort and support to those in need; be-it to patients with serious or life-threatening illnesses, or family members grieving the loss of a loved one and in need of support; or quite possibly, to those who have been in a serious car wreck and seeking quality of life and wanting to be comfortable during their remaining days.
I encourage everyone to sit down and think about how they would want their health directed if they were to find themselves in a similar, even less life-threating, situation as Sarah. What if you were temporarily impaired and couldn’t speak for yourself? Had Sarah had her Advance Directives done, she could have made her wishes known ahead of time. Talk to your loved ones and make your wishes known.
For more information about Advance Directives, talk to your primary care physician, call your local health department or www.eldercare.acl.gov
Gina (Paradiso) Cathcart is the director of CareCorner, Ltd., Colorado Respite Care. She is a
healthcare educator, passionate about service to others and quality patient care. She can be reached at carecornerof email@example.com.