The article also uses directives when critiquing instructional supplements. This article focuses on advance instructional health care directives (henceforth, directives), which are often referred to as living wills or advance decisions (UK). By Mid-Century, as many as 1 of 12 people over 65 may be living in an advanced stage of dementia. The problem is huge: One-third of people over 65 now die with dementia. Advanced dementia patients may also experience emotional suffering that results in withdrawal that does not present a management problem, and therefore may not be treated.
Unfortunately, none of these sources of suffering can be treated. Traditional advance directives typically omit suffering from sources that cannot be observed contemporaneously so that many clinicians say, “She is just sitting there.” Yet three sources, for example, can cause non-observable severe suffering: disruption of life narrative leaving undesired, tarnished memories with surviving loved ones and cognition so impaired that patients can no longer interact meaningfully with other human beings that leads, in turn, to extreme social isolation and existential suffering (since all their human relationships will have died). Dementia also imposes huge emotional, physical, and financial burdens on loved ones, many of whom continue their sacrifice after patients no longer can either recognize or enjoy them.
Less well-recognized is that patients may suffer from undetected (and therefore untreated) severe physical pain after they lose the ability to complain. They dread this cruel and burdensome terminal disease because-regardless of the specific diagnosis of dementia-in the late or advance stages, it causes loss of memory change in personality decreased cognitive functioning inability to communicate embarrassing and sometimes dangerous behaviors and dependence on others for most, and ultimately all, personal care. People complete advance care planning in order to avoid prolonged dying in advanced (late-stage) dementia. More than half of people fear the diagnosis of dementia and 62% think it means “life is over” (UK). It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives. This article proposes a protocol to prevent this conflict from emerging. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw-mostly from the US and Europe. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying.
Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Process flaws focus on how patients express their end-of-life wishes. This article considers 24 common advance directive flaws in four categories. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding. While advance directives can be patients’ last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. The terminal illness of late-stage (advanced) Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating.
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