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On the Wrong Road By Tony Lauinger Listed as an Advisory Committee member in the Report of the Attorney General's Task Force on End-of-Life Health Care, I find it necessary to make three points: 1) Advisory Committee members were silent observers at the meetings; 2) Oklahomans For Life had no input whatever to the Task Force recommendations; 3) Oklahomans For Life does not support the Task Force Report. I had hoped that, as suggested by the Task Force Report's title, "End-of-Life Health Care," the group would focus on much-needed improvements in the services afforded Oklahomans at the end of life. The Task Force Report does make some positive recommendations in this regard. Regrettably, however, that is not the focus of the report. It is very troubling that the Attorney General's Task Force seems more concerned with facilitating accelerated death than with improving end-of-life health care. The report is replete with examples of this unsettling focus: The Task Force cites the view that "In our culture we praise those who are seen to 'fight' death rather than accept it peacefully. Thus, language and social norms have to be modified to help us accept the goal of comfortable, peaceful death." [Page 19]. The Task Force cites the view that it is a "barrier" to hospice care that "Some ethnic or racial groups ... may resist the change from curative to palliative care or believe that suggestions of such a change are a form of discrimination against them." [Page 22]. The Task Force report actually objects to the "focus of nursing facility care under federal regulation" being "reaching or maintaining the highest practicable level of functioning" on the grounds that improving functioning "can be interpreted to be in conflict with care at the end of life when the patient or surrogate wishes to withhold or withdraw life-sustaining medical treatment...." [Page 13]. "Nursing facility staff believe strongly in their focus of care on rehabilitation…. Education is needed to help staff realize their important role in ensuring the residents can have a good death as well as a good life…. Access to ethics committees would be beneficial…." It would be unfortunate if the life-affirming values of care-givers were undermined by recommendations of the Task Force. The Task Force Report includes at its end an article on Alzheimer's patients by Betty Garrett Wood, J.D. - the only non-Task-Force statement so included - which states, "People with Alzheimer's have the moral and legal right to limit or forgo medical life-sustaining treatment and artificial administration of nutrition and hydration" - without making any mention of their at-least-equal right to choose to receive food, fluids, and treatment. [Page 33]. The article appears to endorse a presumption for starvation and dehydration and against treatment, citing the position that unless there has been "advance planning by a dementia patient" in favor of food and water, "advanced dementia patients" should receive only "palliative care" on the grounds that "efforts at life extension create burdens and avoidable suffering." [Page 34]. The Task Force seems to use the term "care plan" as code for denying life-sustaining care. It worries that "because many people have made no legal directive or named a proxy, it is difficult to meet the requirements for such a care plan." [Page 15] The Task Force laments the "difficulty in determining a terminal prognosis for some conditions" because it views this difficulty in making a determination as an impediment to withdrawing life-sustaining care, food, and fluids. And the Task Force [Page 15] stresses "the need to increase the percentage of residents with advance directives," again for the purpose of gaining authorization to implement a "care plan" at the end of life, i.e., to withhold life-sustaining treatment, fluids, and food. The Task Force laments that "Oklahoma Law "regarding artificial nutrition and hydration is so restrictive" -- simply because our law presumes a person who has not indicated otherwise would not want to be starved to death. To use the term "artificial nutrition and hydration" likewise betrays a bias. Oklahoma law uses the term "artificially administered nutrition and hydration." The food and fluids ingested by a person who receives his sustenance by tube are no more "artificial" than the food and fluids the rest of us ingest. The food can simply be prepared in a blender or taken from a can and introduced into the tube with a syringe by hand. No machines. No electricity. This is not "extraordinary" care. Food is not medicine. Someone with a stomach tube receiving meals through assisted feeding is not on "life-support." Food and water are basic necessities without which any of us would die. Tragically, however, there is significant sentiment among Task Force members for repealing Oklahoma's protective law pertaining to hydration and nutrition. This bias against providing food and water to incapacitated persons shows up repeatedly in the report. In discussing the Durable Power of Attorney for Health Care, the Task Force says, e.g.: "But in order for the proxy named in the document to make life- sustaining decisions, such as discontinuing tube feeding..." [Page 9]. It is very disappointing that the only comments made by the Task Force regarding food and water are negative in tone. Such views are at odds with the public: "A poll completed after the controversial death of Terri Schiavo finds that eight-in-ten (80 percent) likely voters say that a disabled person who is not terminally ill or in a coma, and not being kept alive by life support should not, in the absence of a written directive to the contrary, be denied food and water. By a three-to-one (44 percent to 14 percent) margin, likely voters say that, when there is conflicting evidence on the wishes of a patient, elected officials should order that a feeding tube remain in place." Oklahoma has been a leader among the states in ensuring truly informed consent for decision-making about treatment, food, and fluids through its advance directive form. In contrast to many states whose advance directive forms contain vague and ambiguous language that can lead to denial of treatment, and even of food and fluids, that the signer never intended, Oklahoma's advance directive employs specific, precise language with a series of "check-offs" to elicit and enforce his or her true intent. Yet the Task Force Report asks the Attorney General to issue an opinion that, in clear defiance of Oklahoma statutes, would allow substitution of the "Five Wishes" form, which, however well-intentioned its drafters, suffers from much of the vague and ambiguous language the Oklahoma form avoids. [Page 12]. Informed consent appears to be regarded by the Task Force as more of a hindrance than a protection. Why else recommend "further study" of the Hydration and Nutrition for Incompetent Patients Act (the Oklahoma law that would have spared Terri Schiavo's life)? Why else suggest an advance directive form, Five Wishes, that lists authorization for a health care proxy to withdraw food and water right in the middle of a long series of innocuous, routine, non-life-threatening authorizations such as arranging admission to a hospital, releasing medical records, or applying for Medicare? We should clearly separate food and water - as our current advance directive does, from life-support provided by machines. To blur this distinction, as the Five Wishes form does, violates true informed consent. We should be precise, not ambiguous, in the provisions of our advance directive. Though the Task Force has made positive contributions in several areas, its inordinate interest in expediting death puts at risk those in our state who are at the margins of life: the vulnerable elderly, the sick and incapacitated, the mentally impaired, and infants, children, and adults with disabilities. Oklahomans For Life thus cannot support the Task Force Report on End-of-Life Care. The reason we cannot is that it is not actually care, but the withholding of care, that was the real focus of the Task Force. And the term "end of life" was used to describe not so much a period in time as an objective to be sought. Not care, but the denial of care, and not coincidentally at the end of life… This denial of care is the direct cause of the end of life for the human being involved. In the past, there has been a presumption for life. The work of this hand-picked Task Force is attempting to move us rapidly down the road toward a presumption for death for those who are deemed to have a diminished "quality of life." That is a road down which a caring and compassionate society should not go. For more information Contact Oklahomans for Life
at: 918-749-5022 |