{"title":"Can an effective end-of-life intervention for advanced dementia be viewed as moral?","authors":"Stanley A Terman","doi":"10.1002/dad2.12528","DOIUrl":"10.1002/dad2.12528","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12528"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941521/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kristen Clifford, Monica Moreno, Courtney M Kloske
{"title":"Navigating late-stage dementia: A perspective from the Alzheimer's Association.","authors":"Kristen Clifford, Monica Moreno, Courtney M Kloske","doi":"10.1002/dad2.12530","DOIUrl":"10.1002/dad2.12530","url":null,"abstract":"<p><p>Alzheimer's disease (AD) is the most common cause of dementia, a general term for memory loss and decline in other cognitive abilities enough to interfere with daily life. AD accounts for 60% to 80% of dementia cases. The late stage of AD tends to be the shortest stage and, on average, lasts 1 to 2 years. As this stage of the condition progresses, it requires continuous intensive long-term care and around-the-clock intensive care. The Alzheimer's Association stands firm in its commitment to supporting individuals living with AD and other dementia, their care partners, and their health-care providers as they navigate treatment and care decisions across the continuum of the disease. This article is a direct response to recently published works that run counter to the Association's viewpoint. It outlines the Association's perspective on crucial factors for consideration during late-stage dementia care, including advanced directives, palliative care, nutrition, and legal considerations. It explores diverse perspectives from the field, differing from the Alzheimer's Association's stance. Last, it underscores resources available through the Alzheimer's Association, aiming to present a comprehensive perspective on late-stage care for support and assistance to all involved.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12530"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144629","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Broadening the concept of suffering is a less than adequate strategy for respecting patients in advanced dementia.","authors":"Paul T Menzel","doi":"10.1002/dad2.12533","DOIUrl":"10.1002/dad2.12533","url":null,"abstract":"","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12533"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941496/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144561","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jenny T van der Steen, Trijntje M Scheeres-Feitsma, Petruschka Schaafsma
{"title":"Commentary to: \"Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.\" Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.","authors":"Jenny T van der Steen, Trijntje M Scheeres-Feitsma, Petruschka Schaafsma","doi":"10.1002/dad2.12536","DOIUrl":"10.1002/dad2.12536","url":null,"abstract":"<p><p>Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including \"bi-directional empathic suffering.\" We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12536"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941495/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144563","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Trijntje M Scheeres-Feitsma, Petruschka Schaafsma, Jenny T van der Steen, Johannes J M van Delden
{"title":"Commentary: Can an effective end-of-life intervention for advanced dementia be viewed as moral?","authors":"Trijntje M Scheeres-Feitsma, Petruschka Schaafsma, Jenny T van der Steen, Johannes J M van Delden","doi":"10.1002/dad2.12531","DOIUrl":"10.1002/dad2.12531","url":null,"abstract":"<p><p>We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12531"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941533/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144564","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Fasting to stop suffering in advanced dementia.","authors":"William Lawrence Allen","doi":"10.1002/dad2.12532","DOIUrl":"10.1002/dad2.12532","url":null,"abstract":"<p><p>Many healthcare providers think withholding food and fluids from advance dementia patients, even if those patients requested that when competent, is immoral. This means such patients suffer unnecessarily long. Patients have the ethical right when capacitated to specify that they want assistance with food and drink stopped when they have advanced dementia. Physicians should implement these patient choices when advance dementia patients can no longer feed themselves. In some states there may be legal barriers to this practice. The perpetual placement of food and drink within reach of patients who are unable to feed themselves is futile, so there is no need for it. The best way for persons concerned about suffering in advanced dementia is to add a supplement to one's advance directive specifying under what circumstances one wants food and fluids assistance stopped.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12532"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941568/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144565","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Responses to Open Peer Commentaries about \"Timely dying in dementia: use patients' judgments and broaden the concept of suffering\" and \"Can an effective end-of-life intervention for advanced dementia be viewed as moral?\"","authors":"Stanley A Terman, Karl E Steinberg","doi":"10.1002/dad2.12529","DOIUrl":"10.1002/dad2.12529","url":null,"abstract":"","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12529"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941494/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144631","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Stanley A Terman, Karl E Steinberg, Nathaniel Hinerman
{"title":"Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.","authors":"Stanley A Terman, Karl E Steinberg, Nathaniel Hinerman","doi":"10.1002/dad2.12527","DOIUrl":"10.1002/dad2.12527","url":null,"abstract":"<p><p>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?</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12527"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941520/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Review of Terman's \"Timely dying in dementia: Use patients' judgments and broaden the concept of suffering\".","authors":"Norman L Cantor","doi":"10.1002/dad2.12535","DOIUrl":"10.1002/dad2.12535","url":null,"abstract":"","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12535"},"PeriodicalIF":4.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10941508/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144560","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Flavia Loreto, Serena Verdi, Seyed Mostafa Kia, Aleksandar Duvnjak, Haneen Hakeem, Anna Fitzgerald, Neva Patel, Johan Lilja, Zarni Win, Richard Perry, Andre F Marquand, James H Cole, Paresh Malhotra
{"title":"Alzheimer's disease heterogeneity revealed by neuroanatomical normative modeling.","authors":"Flavia Loreto, Serena Verdi, Seyed Mostafa Kia, Aleksandar Duvnjak, Haneen Hakeem, Anna Fitzgerald, Neva Patel, Johan Lilja, Zarni Win, Richard Perry, Andre F Marquand, James H Cole, Paresh Malhotra","doi":"10.1002/dad2.12559","DOIUrl":"10.1002/dad2.12559","url":null,"abstract":"<p><strong>Introduction: </strong>Overlooking the heterogeneity in Alzheimer's disease (AD) may lead to diagnostic delays and failures. Neuroanatomical normative modeling captures individual brain variation and may inform our understanding of individual differences in AD-related atrophy.</p><p><strong>Methods: </strong>We applied neuroanatomical normative modeling to magnetic resonance imaging from a real-world clinical cohort with confirmed AD (<i>n</i> = 86). Regional cortical thickness was compared to a healthy reference cohort (<i>n</i> = 33,072) and the number of outlying regions was summed (total outlier count) and mapped at individual- and group-levels.</p><p><strong>Results: </strong>The superior temporal sulcus contained the highest proportion of outliers (60%). Elsewhere, overlap between patient atrophy patterns was low. Mean total outlier count was higher in patients who were non-amnestic, at more advanced disease stages, and without depressive symptoms. Amyloid burden was negatively associated with outlier count.</p><p><strong>Discussion: </strong>Brain atrophy in AD is highly heterogeneous and neuroanatomical normative modeling can be used to explore anatomo-clinical correlations in individual patients.</p>","PeriodicalId":53226,"journal":{"name":"Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring","volume":"16 1","pages":"e12559"},"PeriodicalIF":4.0,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10937817/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140133207","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}