Bioethics in Faith and Practice, Volume 1, Number 1

16 Lones ⦁ An Ethical Framework for End-of-Life Decisions Patients and families are seeking to be more involved in the decision-making process. However, they often define involvement in different ways, ranging from having knowledge about specific medical procedures to having the decisive say. If the physician merely provides treatment alternatives and asks patients and families to choose among those options it may make the patients and families feel solely responsible for the medical decisions. On the other hand, some patients and families prefer to have physicians make treatment decisions. When communication is directed to the patient separately from the family and with a different level of degree, the family may be uncertain about what the patient knows and to what he has consented. Some seriously ill patients do not wish to discuss with their physicians their preference for specific treatments. If the family is to participate with the patient and physician in the decision-making process, roles should be clearly defined. There are many other substantial barriers which impede meaningful participation for end-of-life decision making. It is difficult to consider all the implications of “in-the-moment” end of life treatment decisions. Some patients and families do not want to think about dying. Finally, physicians do not have time for lengthy discussion on advance care planning. iv These barriers may lead families to feel the healthcare team is trying to impose their personal opinions on the family or pressure them to make decisions too quickly. The extent of dissatisfaction with patient and family involvement in decision making is underscored by care-givers concerns about the appropriateness of care provided at the end of life. Solomon suggests a gap between views of practicing clinicians and the prevailing guidelines. In the results of a study which surveyed physicians and nurses in five hospitals, almost half (47%) of all respondents and 70% of the house offices stated that they had acted against their conscience in providing end-of-life care. Most care- givers were more concerned about the provision of overly burdensome treatment than about under treatment. Many were disturbed by the degree which technological solutions influenced care and by the under treatment of pain. v These “concerns of conscience” involved three areas. vi First, care-givers expressed concerns about inappropriate, overly burdensome care. These concerns about inappropriate care centered on three distinctions: • Distinctions between withholding vs. withdrawing treatment • Distinctions between actions of killing and allowing to die • Distinctions between consequences that are intended and those that are merely foreseen (doctrine of double effect) Secondly, a sizeable proportion of end-of-life care-givers were reluctant to forgo artificial nutrition and hydration believing medically supplied food and water should always be provided. “Although across professions only a minority (12%) believed that ‘disconnecting a feeding tube is killing a patient,’ a sizable proportion (42%) agreed that ‘even if life supports such as mechanical ventilation and dialysis are stopped, food and water should always be continued’”. vii Many of these care-givers did not want to abandon highly vulnerable patients and were unaware that dehydration may reduce suffering in the final hours of life.