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?
Abstract
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?
Nursing homes became epicenters of COVID-19 in the spring of 2020. Due to the substantial case fatality rates within congregate settings, federal agencies recommended restrictions to family visits. ...Six months into the COVID-19 pandemic, these largely remain in place. The objective of this study was to generate consensus guidance statements focusing on essential family caregivers and visitors.
A modified 2-step Delphi process was used to generate consensus statements.
The Delphi panel consisted of 21 US and Canadian post-acute and long-term care experts in clinical medicine, administration, and patient care advocacy.
State and federal reopening statements were collected in June 2020 and the panel voted on these using a 3-point Likert scale with consensus defined as ≥80% of panel members voting "Agree." The consensus statements then informed development of the visitor guidance statements.
The Delphi process yielded 77 consensus statements. Regarding visitor guidance, the panel made 5 strong recommendations: (1) maintain strong infection prevention and control precautions, (2) facilitate indoor and outdoor visits, (3) allow limited physical contact with appropriate precautions, (4) assess individual residents' care preferences and level of risk tolerance, and (5) dedicate an essential caregiver and extend the definition of compassionate care visits to include care that promotes psychosocial well-being of residents.
The COVID-19 pandemic has seen substantial regulatory changes without strong consideration of the impact on residents. In the absence of timely and rigorous research, the involvement of clinicians and patient care advocates is important to help create the balance between individual resident preferences and the health of the collective. The results of this evidence-based Delphi process will help guide policy decisions as well as inform future research.
Background
Assessing chronic obstructive pulmonary disease (COPD) severity is challenging in nursing home (NH) residents due to incomplete symptom assessments and exacerbation history.
Objective
The ...objective of this study was to predict COPD severity in NH residents using the Minimum Data Set (MDS), a clinical assessment of functional capabilities and health needs.
Methods
A cohort analysis of prospectively collected longitudinal data was conducted. Residents from geographically varied Medicare-certified NHs with age ≥60 years, COPD diagnosis, and ≥6 months NH residence at enrollment were included. Residents with severe cognitive impairment were excluded. Demographic characteristics, medical history, and MDS variables were extracted from medical records. The care provider–completed COPD Assessment Test (CAT) and COPD exacerbation history were used to categorize residents by Global Initiative for Chronic Lung Disease (GOLD) A to D groups. Multivariate multinomial logit models mapped the MDS to GOLD A to D groups with stepwise selection of variables.
Results
Nursing home residents (N = 175) were 64% women and had a mean age of 77.9 years. Among residents, GOLD B was most common (A = 13.1%; B = 44.0%; C = 5.7%; D = 37.1%). Any long-acting bronchodilator (LABD) use and any dyspnea were significant predictors of GOLD A to D groups. The predicted MDS-GOLD group (A = 6.9%; B = 52.6%; C = 4.6%; D = 36.0%) showed good model fit (correctly predicted = 60.6%). Nursing home residents may underuse group-recommended LABD treatment (no LABD: B = 53.2%; C = 80.0%; D = 40.0%).
Conclusion and Relevance
The MDS, completed routinely for US NH residents, could potentially be used to estimate COPD severity. Predicted COPD severity with additional validation could provide a map to evidence-based treatment guidelines and may help to individualize treatment pathways for NH residents.
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