Political Pitfalls in Policymaking: The Texas HPV Vaccine Policy Saga.

Abstract

Kept Alive—The Enduring Tragedy of Margot Bentley Katherine Hammond My mom Margot Bentley started to talk about dying 30 years ago her end of life was incredibly important to her. She did not fear death. What she did fear, however, was a slow lingering, a gradual decline, degradation and loss of her dignity. She spoke about this many times with her family. In 1991, when my mom was of sound mind and body, she wrote what she called her Living Will. The Advanced Directives, which she detailed, made her wishes very clear, in our opinion. She wrote: “If at such a time the situation should arise that there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by artificial means or heroic measures.” She also wrote that she be given no nourishment or liquids. She added a hand written note under E: OTHER in her Living Will it reads “In the event that mental deterioration is such that I am unable to recognize members of my family, I ask that I be euthanized.” In 1999, eight short years later, my mom was diagnosed with Alzheimers she was horrified. We were all horrified. She was a Registered Nurse and knew well what her future would hold. She made her family promise that her Living Will would be honored. [End Page 80] My mom was looked after at home for about five years, until it became impossible. She has been in long–term care now for over 12 years. She started to lose the ability to recognize us about 10 years ago her words became garbled and incomprehensible and she then gradually lost the ability to speak. My mom stopped walking or moving, and then could no longer even stand to be transferred. Eventually she was unable to even sit up in a chair. For the past five years she has been vegetative she lies silent and motionless in bed, contracted and spastic, unable to speak or to move, eyes closed most of the time, essentially unresponsive and diapered. She is being kept alive by being “force fed”, in the words of her family physician. The care facility where my mom resides is ignoring his written order that stipulates that the staff feed his patient only if she indicates a desire to eat. Her doctor respects the rights of his (mentally competent adult) patients to refuse care, treatment or intervention of any kind, even if this means they will die. He is supportive of my mom’s previously expressed wishes to simply be left alone, to be allowed to die, while of course, being provided with sedation and pain relief and compassionate end of life care. My mom has what we believe to be the very basic rooting reflex of a newborn infant or a severely brain damaged adult when her mouth is prodded with a spoon, she will open it, reflexively, even if the spoon is empty. Several legal opinions have described the force–feeding of my mom as a “battery”—she is being touched with a spoon without her consent and against her (previously expressed) wishes. In 2011, my family approached the care facility where my mom resides and asked that her Living Will be honored. Initially it seemed that it would be, that force feeding would stop and that she would be kept comfortable with medication and sedation and be allowed to die. We all felt incredibly relieved. However, a couple of short days later, the local Health Authority intervened and stated that they had a duty to provide care to my mom, a duty to continue to feed her. In the British Columbia Health Care Act, Medical care is differentiated from Basic Care, with legal representatives being allowed to make decisions about medical choices (i.e.: no antibiotics) but not allowed to make decisions about basic care, and it was argued later in court as to whether the provision of nourishment and liquids is health care or basic care. Our position was that food and water form the most basic and essential elements of health care because, without them, we...