Can an effective end-of-life intervention for advanced dementia be viewed as moral?

Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers' assistance with oral feeding and hydrating. The article presents eight criticisms and "alternate views" regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients' autonomous right of self-determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients' underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia.

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying.

BACKGROUND: 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. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. 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. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding. AIM: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. 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. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives. CONCLUSION: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. 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?

TRIAD IX: Can a Patient Testimonial Safely Help Ensure Prehospital Appropriate Critical Versus End-of-Life Care?

OBJECTIVE: The present study sought to assess the clarity of Physician Orders for Life-Sustaining Treatment (POLST) or Living Will (LW) documents alone or in combination with a video message/testimonial (VM). METHODS: Emergency medical services (EMS) personnel responded to survey questions about the meaning of stand-alone POLST and LW documents and those used in conjunction with emergent care scenarios. Personnel were randomized to receive documents only or documents with VM. Questions sought a code status for each scenario and a resuscitation decision. Code status responses were analyzed for consensus (95% response rate), resuscitation responses for correct treatment decisions. RESULTS: The survey response rate was 85%. Approximately half of emergency medical technician (EMT) respondents were EMT basic, and half EMT respondents were paramedic, with an average age of 42 years. Less than half had previous POLST/LW training averaging 2 hours. Consensus failed to be reached for stand-alone documents. For clinical scenarios, responses to POLST documents specifying do not resuscitate/comfort measures only or cardiopulmonary resuscitation/full treatment exceeded 80% for code status designation and correct resuscitation decisions. Other POLST resuscitation/treatment combinations showed more disparate responses, and most benefited from VM with changes in responses of 20% or more (P ≤ 0.025). Code status responses to LW-based scenarios evidenced a nonconsensus majority (79%-83%) that was significantly affected with VMs (≥12%, P ≤ 0.004); half evidenced large changes in resuscitation decisions (49%, P < 0.001). CONCLUSIONS: Document clarity, judged by consensus response, was rarely evidenced. video message/testimonial seems to be a helpful aid to both POLST and LWs. Standardized education and training reveal opportunities to improve patient safety to ensure patient wishes.

TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care.

OBJECTIVE: End-of-life interventions should be predicated on consensus understanding of patient wishes. Written documents are not always understood; adding a video testimonial/message (VM) might improve clarity. Goals of this study were to (1) determine baseline rates of consensus in assigning code status and resuscitation decisions in critically ill scenarios and (2) determine whether adding a VM increases consensus. METHODS: We randomly assigned 2 web-based survey links to 1366 faculty and resident physicians at institutions with graduate medical education programs in emergency medicine, family practice, and internal medicine. Each survey asked for code status interpretation of stand-alone Physician Orders for Life-Sustaining Treatment (POLST) and living will (LW) documents in 9 scenarios. Respondents assigned code status and resuscitation decisions to each scenario. For 1 of 2 surveys, a VM was included to help clarify patient wishes. RESULTS: Response rate was 54%, and most were male emergency physicians who lacked formal advanced planning document interpretation training. Consensus was not achievable for stand-alone POLST or LW documents (68%-78% noted "DNR"). Two of 9 scenarios attained consensus for code status (97%-98% responses) and treatment decisions (96%-99%). Adding a VM significantly changed code status responses by 9% to 62% (P ≤ 0.026) in 7 of 9 scenarios with 4 achieving consensus. Resuscitation responses changed by 7% to 57% (P ≤ 0.005) with 4 of 9 achieving consensus with VMs. CONCLUSIONS: For most scenarios, consensus was not attained for code status and resuscitation decisions with stand-alone LW and POLST documents. Adding VMs produced significant impacts toward achieving interpretive consensus.