Issues in Interdisciplinarity 2020-21/Evidence in the Euthanasia of Dementia Patients

Introduction The euthanasia of dementia patients is becoming increasingly contentious as the syndrome's prevalence rises with the ageing population, and concerns over healthcare costs and wellbeing grow.Cleusa P Ferri, Martin Prince, Carol Brayne, Henry Brodaty, Laura Fratiglioni, Mary Ganguli, Kathleen Hall, Kazuo Hasegawa, Hugh Hendrie, Yueqin Huang, Anthony Jorm, Colin Mathers, Paulo R Menezes, Elizabeth Rimmer, Marcia Scazufca, Global prevalence of dementia: a Delphi consensus study The Lancet 366 9503 https://doi.org/10.1016/S0140-6736(05)67889-0.World Alzheimer Report 2016: Improving healthcare for people living with dementia: coverage, quality and costs now and in the future https://www.alzint.org/u/WorldAlzheimerReport2016.pdf Alzheimer's Disease International Prince Comas-Herrera Knapp Guerchet Karagiannidou Martin Adelina Martin Maëlenn Maria 2016 Dec 12, 2020Bringing the Social Back in: A Critique of the Biomedicalization of Dementia Karen A. Lyman The Ccrontological Society of America 1989 https://doi.org/10.1093/geront/29.5.597 29 5 Euthanasia, the act of painlessly ending a life to relieve suffering,Encyclopaedia Britannica 2019 The Editors of Encyclypaedia Britanica Euthanasia Dec 13, 2020 https://www.britannica.com/topic/euthanasia is, where legal, increasingly requested by dementia patients.de Beaufort van de Vathorst Inez D. Suzanne Dementia and assisted suicide and euthanasia 2016 https://link.springer.com/article/10.1007/s00415-016-8095-2 Dementia is 'a group of related symptoms associated with a gradual decline in brain functioning'.NHS About Dementia: dementia guid 2020 NHS https://www.nhs.uk/conditions/dementia/about/ Dec 12, 2020 thumb|Alzheimer's disease and other dementias world map (in deaths per million persons) Two branches of the debate especially generate interdisciplinary tensions. This chapter explores how tensions between Medicine, Sociology, and Ethics concerning this issue can be explained by the forms of evidence these disciplines examine. The first branch concerns judgements between an individual's life and the wellbeing of their society. The disciplines each bring valuable insights to the debate, yet struggle to reach a consensus on the right approach. The second concerns the rights of patients: examining differing disciplinary understandings of the syndrome, how they affect an individual's autonomy and approaches to valuing lives. Individual and Collective Benefits The three disciplines have contrasting approaches to the conflict between benefits to individuals and their society. Ethics, the study of morality, forms arguments logically, based on axiomatic or subjective assumptions of the writer, discipline, and opposing positions.Ethical principles (In Burton, D. Research training for social scientists) Kent, G. 2000 61-67 SAGE Publications https://methods.sagepub.com/book/research-training-for-social-scientists/d11.xmlNursing Ethics Nursing and euthanasia: A narrative review of the nursing ethics literature Pesut B, Greig M, Thorne S, et al. 27 1 2020 152-167 https://doi.org/10.1177/0969733019845127 Anecdotal evidence is also used to highlight specific moral issues. Dresser, for example, criticises one case where a court prioritised 'economic and third party [family] concerns' over those of an 'incompetent' patient in permitting the cessation of life extending treatment. Logically extending from axioms of respect for autonomy and life, they view the decision as immoral, contrasting with sociological and medical positions.Freedom-Costs of Canonical Individualism: Enforced Euthanasia Tolerance in Belgium and the Problem of European Liberalism Journal of Medicine and Philosophy https://doi.org/10.1080/03605310600860759 Delkeskamp-Hayens C. 31 2006 4 333-362 Dec 13, 2020 Sociology studies the behaviour and experience of individuals based on their demographics and groups, and is therefore concerned with the social influences on decision-making and the effects of decisions and policies on groups.Form Faris William Robert E.L. May 06, 2020 Sociology https://www.britannica.com/topic/sociology Encyclopædia Britannica December 05, 2020Brooks John I. 1996 THE DEFINITION OF SOCIOLOGY AND THE SOCIOLOGY OF DEFINITION: DURKHEIM’S RULES OF SOCIOLOGICAL METHOD AND HIGH SCHOOL PHILOSOPHY IN FRANCE https://onlinelibrary.wiley.com/doi/pdf/10.1002/%28SICI%291520-6696%28199610%2932%3A4%3C379%3A%3AAID-JHBS4%3E3.0.CO%3B2-M Journal of the History of the Behavioral Sciences 32 4 December 05, 2020Lieberson Stanley Einstein, Renoir, and Greeley: Some Thoughts About Evidence in Sociology https://www.proquest.com/docview/218813913 American Sociological Review 57 1 December 05, 2020 Although many relevant studies are published in medical journals, their sociological approach constructively builds on medical and ethical discussions. Several studies explore the effects of euthanasia and dementia on the experiences of family members, suggesting that allowing euthanasia decreases levels of grief, trauma and depression in families.Swarte van der Lee van der Bom van den Bout Heintz Nikkie B Marije L Johanna G Jan A Peter M 2003 Effects of euthanasia on the bereaved family and friends: a cross sectional study https://doi.org/10.1136/bmj.327.7408.189 BMJ 327 189 Dec 10, 2020Ganzini Goy Dobscha Prigerson Linda Elizabeth R Steven K Holly 2009 Mental Health Outcomes of Family Members of Oregonians Who Request Physician Aid in Dying https://doi.org/10.1016/j.jpainsymman.2009.04.026 Journal of Pain and Symptom Management 38 6Watson Tatangelo McCabe Brittany Gemma Marita 2019 Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review https://doi.org/10.1093/geront/gny049 The Gerontologist 59 5 Dec 06, 2020 Roest's study found that, despite the legal, ethical and medical narratives suggesting otherwise, patients' families were central in both physician and patient decisions concerning euthanasia. Rather than criticising this, they suggest that the family's role should be further recognised, contradicting Dresser's conclusion.Roest Trappenburg Leget Bernadette Margo Carlo 2019 The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: a systematic mixed studies review https://doi.org/10.1186/s12910-019-0361-2 BMC Medical Ethics 20 23 Thus, different conclusions result from different forms of evidence: ethical premises and anecdotes vs. qualitative, community-focused data. Quality Adjusted Life Years (QALY) is a common measure used to distribute scarce resources and maximise usefulness of medical treatments.Drummond M, Brixner D, Gold M, Kind P, McGuire A, Nord E Toward a Consensus on the QALY 2009 Value In Health 12 S31-S35 http://www.med.mcgill.ca/epidemiology/courses/EPIB654/Summer2009/Toward%20consensus%20on%20QALY.pdf It calculates life expectancy, adjusted for any health conditions or disabilities a person lives with. The measurement therefore favours the young and healthy, leading to a reluctance to assign resources to patients that could remain in poor health after treatment.Resource Allocation, Social Values and the QALY: A Review of the Debate and Empirical Evidence David L B. Schwappach 2002 Health Expect https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5060157/#b4Roberts T Bryan S Heginbotham C McCallum A Public Involvement in Healthcare Priority Setting: An Economic Perspective Health Expectations 1999 pp.235-244 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5080947/ Due to its assumption of perfect health as an optimum, focus on maximising 'benefit' to society as a whole, and reliance on empirical rather than qualitative evidence or axiomatic values, the QALY is criticised in sociology and ethics for its discrimination against the ageing and disabled.Journal of Medical Ethics Against lifetime QALY prioritarianism Herlitz Anders 2018 44 2 https://jme.bmj.com/content/44/2/109.infoBarrie S. 2014 Euthanasia and the Puzzle of Death Journal of Medical Ethics pp.635-638 https://www-jstor-org.libproxy.ucl.ac.uk/stable/44014169?seq=1#metadata_info_tab_contentsHealthcare Allocation Anthony Fisher 9780906561195 Linacre Centre 2001 Luke GormallyResource Allocation, Social Values and the QALY: A Review of the Debate and Empirical Evidence David L B. Schwappach 2002 Health Expect https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5060157/#b4Arnesen T Nord E The Value of DALY life: Problems with Ethics and Validity of Disability Adjusted Life Years British Medical Journal 1999 pp. 1423-1425 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117148/ This criticism is especially relevant to dementia patients, who face stigmas associated with dementia and financial pressures to fulfil their "special duty [to society] to die",Beckford M 2008 Baroness Warnock: Dementia Sufferers May Have A "Duty To Die' The Telegraph https://www.telegraph.co.uk/news/uknews/2983652/Baroness-Warnock-Dementia-sufferers-may-have-a-duty-to-die.html 2020-11-30 decreasing their chances of receiving healthcare resources. There are further ethical and sociological claims that dementia patients are depersonalised by the increasing medicalisation of old age, where they are perceived as unwell, as opposed to merely old. Personhood The issue of personhood and dementia is highly intersectional, influenced from across the human sciences. Ethics, sociology and medicine have very different approaches to the concept's importance and how it should be preserved. thumb|The skeletal formula for Donepezil: one of the most commonly used drugs in the treatment of dementia. The medical diagnosis of dementia includes cognitive, neuropsychological, and genetic tests.What is Dementia? Symptoms, Types and Diagnosis. National Institute on Ageing 2017 https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis Research-wise, medicine focuses on physiological interventions and symptom-relieving drugs,Alzheimer's Society 7 New Developments in Dementia Research in 2019 https://www.alzheimers.org.uk/blog/new-developments-dementia-research-2019 generating the empirical evidence that medicine's physiological focus is grounded in. Due to this focus, the medical community faces considerable pressure for timely diagnosis, symptom relief, life-extending interventions, and rapid transitions into care programs.Burns A Buckman L Timely Diagnosis of Dementia: Integrating Perspectives, Achieving Consensus NHS England 2013 https://www.dementiaaction.org.uk/assets/0000/3808/NHS_England_BMA_Diagnosis_Consensus.pdfRyan Christine 7 26 Palliative Medicine https://doi.org/10.1177/0269216311423443 Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff 2011 Merryn Gardiner Gary Clare Tony Ingleton Gott Bellamy December 06, 2020Treatment of Dementia Overshott R Burns A https://jnnp.bmj.com/content/76/suppl_5/v53 Journal of Neurology, Neurosurgery and Psychiatry Sociology explores the issue through a social constructionist framework and qualitative evidence, investigating the cultural, social and demographic factors that impact the prevalence and perception of the syndrome.Alzhiemer's Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society Johnstone Megan-Jane 9781409451921 Ashgate 2013 https://books.google.co.uk/books?hl=en&lr=&id=byEGDAAAQBAJ&oi=fnd&pg=PP1&dq=personhood+dementia+euthanasia+medicalization+sociology+fate+worse+than+death&ots=JiFSW-91qI&sig=weCme471RQ-vpSn01k2IVVHUZMA&redir_esc=y#v=onepage&q&f=false 2020-12-10Plassman B.L. · Langa K.M. · Fisher G.G. · Heeringa S.G. · Weir D.R. · Ofstedal M.B. · Burke J.R. · Hurd M.D. · Potter G.G. · Rodgers W.L. · Steffens D.C. · Willis R.J. · Wallace R.B. Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study https://doi.org/10.1159/000109998 29 1-2 Neuroepidemiology 2007 Dec 10, 2020 This approach leads to a view of dementia that is based on its experience being an intersection of social position, symptoms, and the construction of dementia.Resende EDPF Llibre Guerra JJ Miller BL 2019 Health and Socioeconomic Inequities as Contributors to Brain Health https://doi.org/10.1001/jamaneurol.2019.0362 Jama Neurology 76 6Sutin Stephan Robinson Daly Terracciano Angelina R. Yannick Eric Micheal Antonio 2019 Perceived weight discrimination and risk of incident dementia https://doi.org/10.1038/s41366-018-0211-1 International Journal of Obesity 43 Due to this evidence base and understanding of dementia as being socially constructed by medical classifications and media presentation, Johnstone and others argue that unnecessary stigma and fear have been generated around ageing by the medicalisation of dementia, leading to the depersonalisation of patients.Beard Renée L 2017 Dementia and the privilege of growing old https://doi.org/10.1177%2F1471301217709661 Dementia 16 6 Dec 10, 2020shakespeare Zeilig Mittler Tom Hannah Peter 2019 Rights in Mind: Thinking Differently About Dementia and Disability https://doi.org/10.1177/1471301217701506 Dementia 18 3 Dec 10, 2020 This, and literature, showing how dementia prevalence and experience vary by demographics, has raised concerns that allowing euthanasia could become discriminatory.Gale Barak Chris Yoram 2019 Euthanasia, medically assisted dying or assisted suicide: time for psychiatrists to say no https://doi.org/10.1177%2F1039856219878645 Australasian Psychiatry 28 2 Dec 10, 2020Zhang M. 1990 Prevalence study on dementia and Alzheimer disease https://europepmc.org/article/med/2174278 Zhonghua yi xue za zhi 70 8 Dec 10, 2020 This 'depersonalisation' is justified in medicine by the elements of competence to consent: communication of a choice, factual understanding, appreciation of consequences, and rationality.Linda Ganzini, Gregory B. Leong, Darien S. Fenn, J. Arturo Silva, Robert Weinstock Evaluation of Competence to Consent to Assisted Suicide:Views of Forensic Psychiatrists The American Journal of Psychiatry 157 4 https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.157.4.595 2000 Dec 12, 2020Assessing Competence to Consent to Treatment: a Guide for Physicians and Other Health Proffessionals 0195103726 Oxford University Press 1998 https://books.google.co.uk/books?hl=en&lr=&id=krckyCidSugC&oi=fnd&pg=PA1&dq=competence+to+consent+in+medicine&ots=132sy_fvVr&sig=mKO7dLMCMugAXnVJUSJH1xRYfPk&redir_esc=y#v=onepage&q&f=false Dec 12, 2020 Grisso Thomas Appelbaum Paul S. Thus, dementia patients are often not considered competent in their decisions, especially those who refuse food or treatment, or opt for euthanasia. The concern about the euthanasia of dementia patients is shared by sections of sociological literature and medical practice, but for very different reasons.Living to the Bitter End? A Personalist Approach to Euthanasia In Persons With Severe Dementia Chris Gastmans 2009-12-23 https://doi.org/10.1111/j.1467-8519.2008.00708.x Bioethics Volume 24, Issue 2 Tension arises from the sociological view that, in medicines neglect of patient autonomy, pessimism and 'pejorative interpretations of forgetfulness', they perpetuate a view of a 'black hole of ageing' which magnifies the patients desire for death while disrespecting requests or attempts to achieve it. The consensus in ethics is generally that the wishes of the patient should be respected, and that advance directives are problematic in this regard.A review of ethical issues in dementia Johnson Karlawish Rebecca A. Jason International Psychogeriatrics 2015 http://dx.doi.org/10.1017/S1041610215000848 10 27 Dresser criticises the medical practice for neglecting the present patient when decisions are made based on their advance directives or another individuals assessment.Dresser, R. Life, death, and incompetent patients: Conceptual infirmities and hidden values in the law Arizona Law Review 28 3 373-406. https://heinonline.org/HOL/P?h=hein.journals/arz28&i=389 1986 Her argument is based on Parfit's 'Complex view' of personal identity, which is a view based on the subjective, qualitative observation that people feel disconnected from their previous selves and their values change over time. The evidential conflict with medicine is clear. As it concerns the physical changes in a body over time, viewing an individual as multiple persons over the course of their life seems incompatible with medical methods.Advance directives in dementia: issues of validity and effectiveness 2009 Marike E. de Boer, Cees M. P. M. Hertogh, Rose-Marie Droes, Cees Jonker, Jan A. Eefsting1 https://www.moderne-dementiezorg.nl/upl/levenseinde_en_zingeving/Advance%20directives%20in%20dementia%20-%20De%20Boer%20-%20final%20version.pdf International Psychogeriatrics 22 2 Conclusion There is little consensus between Medicine, Ethics and Sociology in regards to euthanasia and dementia. Each discipline draws from evidence that prioritises different areas of the issue of living with dementia. Medicine continues to do valuable work for those suffering from dementia, however, medical practice would benefit from sociological and ethical insights. Sociology is concerned with intersectional affects on the experience of dementia, criticising policies and representations that favour one group over another or create unnecessary suffering. It brings insights into how cultural and medical views can be improved to support people with dementia, as well as important social considerations in the euthanasia debate. Ethics, concerned with morality and individual rights, also raises valuable questions. It integrates these with sociological studies of how the treatment and rights of dementia patients could be improved in medical practice, especially concerning their right to die. There is encouraging research bridging this gap in medical sociology and medical ethics, however, significant difficulty exists in changing medical practice due to its highly practical focus.From best evidence to best practice: effective implementation of change in patients' care Grol Richard Grimshaw Jeremy The Lancet 2003 362 9391 https://doi.org/10.1016/S0140-6736(03)14546-1 References