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

peppermintdragon
- initial research and brainstorming 

- wrote sections in regards to medicine:


 *  Individual and Collective Benefits 
 * - QALY
 * - what it is and what it's used for
 * - how it's ageist, tensions with sociology and ethics
 * - depersonalisation of dementia patients
 * Personhood
 * - diagnosis and research of dementia
 * - biomedicalisation of dementia

- contributed to restructuring of chapter: was originally organised by discipline, now by tensions

- contributed to introduction

- contributed to conclusion

'''- added images

- did individual citations

- grammar + spell check

- simplifying and clarifying language, reducing word count

oliveoilandgarlic
- initial research and brainstorming

- wrote sections in regards to ethics
 * Individual and Collective Benefits
 * - value should be placed on individual autonomy
 * Personhood
 * - wishes of patients (at present) should be respected, problematic when dealing with advanced directives

- wrote sections in regards to sociology
 *  Individual and Collective Benefits
 * - how demographic group plays a role
 * - the importance of family in the decision to euthanise
 * Personhood
 * - social constructionism of dementia
 * - contrast with the way medicine perpetuates "black hole of ageing"

- contributed to and initiated restructuring of chapter: was originally organised by discipline, now by tensions

'''- contributed to introduction

'''- contributed to conclusion

'''- did individual citations

'''- checked citations

'''- simplifying and clarifying language, reducing word count

thialiaz
- initial research and brainstorming

- initial writing and research on ethics in general

- contributed how ethics applies to QALY

- simplifying and clarifying language, reducing word count

- added in text hyperlinks 

general
- spelling and grammar check - to be done by pepermintdragon (4) - done

- hyperlinks - to be done by Thialiaz (6)

- pictures? - to be done by Oliveoilandgarlic (6) done by peppermintdragon

- FIX THE TALK PAGE (5)

Referencing
- find citations where [citation needed] appears in the text - Oliveoilandgarlic (3) done

- put citations into wikicode where it has not yet been done - whoever wrote them (3) all - done

- make sure they're all in perfect vancouver - to be done Oliveoilandgarlic (5)

individual vs collective debate
- Find specific ethical perspectives - to be done by Thialiaz Done (by oliveoilandgarlic)
 * https://heinonline.org/HOL/Page?collection=journals&handle=hein.journals/arz28&id=389&men_tab=srchresults this is a good example of an ethical criticism of prioritising the family and society over the individual, see page 378 and 379 --Oliveoilandgarlic (discuss • contribs) 22:06, 12 December 2020 (UTC)

- look at ethical methods (do they look at the axioms behind a policy, how does this affect thier views, etc) - to be done by Thialiaz - Done by Oliveoilandgarlic

- an ethical perspective on the qaly - to be done by Thialiaz - done

- make the qaly section fit better is it depersonalization or collectivist or both - to be done by peppermintdragon - done

- simplifying and clarifying language and sentences - all (4)

personhood
- an ethical view on personhood, patient autonomy and mental health, when do they have the right to make a decision, when is it justified give them less freedom etc etc - to be done Oliveoilandgarlic (1) done

- simplifying and clarifying language and sentences - ALL (4)

conclusion
- summarise individual vs collective debate - to be done by peppermintdragon (2) done

- summarise personhood debate - to be done by peppermintdragon (2) done

- what's being done/ could be done to overcome these tensions - to be done Oliveoilandgarlic (2)
 * i don't think we need this anymore. It would be nice to have it but we're already finding the word count difficult- what do you guys think? --Peppermintdragon (discuss • contribs) 09:45, 14 December 2020 (UTC)

=Talk=

Timeline
Brainstorming

Shortlisting and preliminary research now? DONE

Picking a topic (thursday - or sooner ?) DONE

Initial research -(just enough to decide on chapters and points and plan them out?) DONE

Decide on 2-3 sections - next monday(24th) or thursday(27th) DONE

Researching and forming a detailed plan - Monday the 30th DONE

Researching in detail for sections and start writing first week of December

Start writing - ASAP

Finish writing - 7th December

Proofread and clarify

Finish - 14th December

Paragraph structure and what to research for each section:
 * Topic sentence (summary of the view of current discipline)
 * Methods and evidence of discipline
 * How these result in Tensions
 * How these tensions play out in the real world (examples and quotes if possible)

Chat
Hi guys! Did we set a date for when we wanted to finish the introduction and conclusion?
 * I would be happy to meet on friday or saturday to finalise this --Oliveoilandgarlic (discuss • contribs) 12:08, 10 December 2020 (UTC)
 * sounds good. I'll try and get some initial ideas down so that when we meet we can just focus on fluency and conciseness --Peppermintdragon (discuss • contribs) 16:57, 10 December 2020 (UTC)

Also, could you read my section titled interdisciplinary tensions? I'm thinking of just cutting the whole thing but I'm not sure if there's anything I should keep. --Peppermintdragon (discuss • contribs) 00:23, 10 December 2020 (UTC)
 * It is very clearly written and concise, and lines up very well with the perspectives I am exploring in sociology. It should help guide our writing. --Oliveoilandgarlic (discuss • contribs) 12:08, 10 December 2020 (UTC)
 * Oh okay! I'll leave it in then. --Peppermintdragon (discuss • contribs) 16:57, 10 December 2020 (UTC)

Discussion from whatsapp group on chapter structure
I'd like to quickly discuss an alternative structure for the chatper: I was thinking there seems to be a perspective from each discipline on the main clashes:

Biomedicalization/Depersonalisation
medical studies support this through correlation of symptoms

Sociological studies dispute this through social constructionism and discrimination arguements

Ethics has a lot to say about this. When is someone so sick they shouldn't be able to make choices? What are the criteria for justified euthanasia and does dementia fit it?

Individualist Vs collectivist clash
Medicine focusses on patient life as it's primary goal

Sociology looks at the affects on communities and the benefits and costs to society as a whole - again fearing discrimination but seeing the benefits of euthanasia to families

There are both individualist ethicists (who will value autonomy and think it wrong for the society to have a hand in death) and collectivist ethicists -most benefit to the most people - who will agree more with the sociological perspective --
 * I think organising it this way, three paragraphs under each tension would help us avoid repeating ourselves and, I think, make the article flow better
 * We could even have subheadings for the disciplines under the tensions
 * what do you think? --Oliveoilandgarlic (discuss • contribs) 16:24, 10 December 2020 (UTC)


 * I think most people are organising it by discipline, so organising it this way might be a bit risky? I know it doesn't say anything specifically about it in the assignment but I'd really err on the side of what's worked in the previous years

We can make the clashes very clear when we're editing tomorrow. -t


 * I think that could work. Do we have enough overlaps though? - Peppermintdragon
 * I'm not sure that we have enough overlaps, but it could work, if you both agree. -t
 * We could also use the tensions to make the sections flow together eg. if I mentioned the biomedicalisation of dementia and it led into yours where you mention it - but the section introducing the discipline may get in the way of this - Peppermintdragon
 * We could make it work, maybe if we just write the sections clearly on those tensions then when we meet friday or saturday we can decide to reorganise it or not, itll take a few hours to get the flow right anyway, we may as well keep it as an option. - Oliveoilandgarlic
 * t, oliveoilandgarlic and I are restructuring the page by tensions. We've copied the other version into his sandbox incase it doesn't work. We'll talk to you about the changes later and you can see if you agree --Peppermintdragon (discuss • contribs) 16:12, 11 December 2020 (UTC)

Introduction
Do you guys think we should sort of summarise the chapter in the intro,, or just use it to introduce and define euthanasia and dementia? maybe we could also define the disciplines?

Defining euthanasia

The importance of the issue
 * https://www.sciencedirect.com/science/article/pii/S0140673605678890 global prevalence of dementia - 24.3 million as of jan 2005, 4.6 million new cases per year, was projected to hit 42 million in 2020 and 81 million by 2040 --Oliveoilandgarlic (discuss • contribs) 17:20, 5 December 2020 (UTC)
 * https://www.alzint.org/u/WorldAlzheimerReport2016.pdf

total worldwide cost of dementia estimated at 818 billion as of 2016 - estimated to increase to a trillion by 2018.--Oliveoilandgarlic (discuss • contribs) 17:20, 5 December 2020 (UTC)

https://www.abdn.ac.uk/sdhp/documents/forgettingwhoseweare.pdf

Why the issue is difficult

By difficult, do you mean that it's difficult to come to a consensus on the issue? Maybe here we could also talk about why it's such an interdisciplinary topic. --Peppermintdragon (discuss • contribs) 00:27, 10 December 2020 (UTC)
 * Yes exactly, we can talk about how the issue encapsulates issues from the eternal debate of individual vs collective values and causes some of the core principles of western morality to be questioned, leading to the issue being highly charged and complex to form any concensus on. It questions: the sanctity of life and what a 'life' is, as well as the existence individual autonomy and how far it should be respected. --Oliveoilandgarlic (discuss • contribs) 12:12, 10 December 2020 (UTC)

Medical Perspective
(peppermintdragon- unless otherwise labelled)

I think the DALY and QALY will be important here as measures used to determine the use and effectiveness of medicines --Oliveoilandgarlic (discuss • contribs) 15:48, 5 December 2020 (UTC)


 * reply: yeah, I tried looking into them but they seem to assess the effectiveness of drugs on an economic level and not so much biological, so I'm not sure how applicable that is in this section- what did you find on them? peppermintdragon (discuss • contribs)


 * update: okay I've looked into it more and found a lot of stuff about medical economics and how it's ageist so I'll write about that peppermintdragon (discuss • contribs)
 * https://rgs-ibg.onlinelibrary.wiley.com/doi/full/10.1111/tran.12055 this is what I found on the DALY that inspired me to put that note here. --Oliveoilandgarlic (discuss • contribs) 12:17, 10 December 2020 (UTC)
 * I think I've read this! It's interesting that within medicine, there are many tensions within sub-disciplines eg. doctors tend to lean towards preserving life whereas pharmaceutical companies employ evidence like DALYs which lead to the "[pursuit of] the protection of profits over the preservation of lives" - maybe I should mention this intra-disciplinary tension in section? --Peppermintdragon (discuss • contribs) 17:03, 10 December 2020 (UTC)

https://books.google.co.uk/books?hl=en&lr=&id=WSAAEAAAQBAJ&oi=fnd&pg=PA31&dq=does+dementia+disproportionality+affect+the+poor&ots=Y5h_m_xfWf&sig=i7zyBHiAPmNGB_P_TZs__XBiJ9c&redir_esc=y#v=onepage&q&f=false diagnosis and treatement guide for dementia, validity needs to be assessed --Oliveoilandgarlic (discuss • contribs) 18:10, 5 December 2020 (UTC)

What is medicine, evidence
“Medicine is the science or practice of the diagnosis, treatment, and prevention of disease” (1). It primarily draws upon quantitative evidence, such as randomised controlled trials (RCTs) and systematic review, which are mostly designed to remove any forms of bias (2). This objective focus on saving and prolonging life (3) makes its empirical approach to euthanasia and dementia one that often meets tension with other disciplines that are grounded in axiology. (4)

- DALY and QALY: numerical measurement of quality of life- can you do that?

https://www-jstor-org.libproxy.ucl.ac.uk/stable/44014169?seq=1#metadata_info_tab_contents https://academic.oup.com/bmb/article/96/1/5/300011

- Hippocratic oath: ‘I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect’.
 * not going to use this quote because it's from the original oath that also talks about never allowing abortion etc.
 * Yes, I did a bit of research into the hypocratic oath issue and it seems that many versions and different oaths are used today to better fit modern values, meaning there is no consensus on the values it presents in the medical community. --Oliveoilandgarlic (discuss • contribs) 12:14, 10 December 2020 (UTC)

The diagnosis and treatment of dementia
(honestly not sure how to link this??)

The medical diagnosis of dementia involves cognitive and neuropsychological tests, lab tests, brain scans, psychiatric evaluation, and genetic tests (5), procedures that mainly yield quantitative evidence. This is reflected in its medical treatment.

It takes a practical stance on dementia with less regard for psychological and existential suffering than other disciplines.

Palliative Care (link?) End of Life care inadequate → affects decision to end life, link to quality of life (find source for inadequate palliative care if i choose to include but probably won't)
 * I have one: "Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff" https://journals.sagepub.com/doi/10.1177/0269216311423443 I've already cited it in the chapter.--Oliveoilandgarlic (discuss • contribs) 12:21, 10 December 2020 (UTC)

Conflicting views within medicine
(this might be a good area to explore, but there's not much in relation to dementia)

- Euthanasia not medicine: https://academic.oup.com/bmb/article/106/1/45/321635
 * reminder to self to take another look at this article tomorrow maybe use in section introduction

- Many french doctors want to legalise euthanasia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC194087/ - It is also noteworthy that physicians involved in palliative care, including in Britain, appear to be particularly concerned about legalising euthanasia.31

- Regulation of euthanasia

- With respect to the active ending of life for patients with dementia, the level of acceptance was 63% for the public and 6% for physicians.28

Interdisciplinary Tensions
Where medicine is a discipline largely centred on objective evidence, ethics draws from qualitative, subjective evidence. This creates inevitable interdisciplinary tension when it comes to the euthanasia of dementia patients. This tension stems from the fundamental basis of modern medicine. Margaret Mead observed that the Hippocratic Oath was what separated sorcery and modern medicine: “For the first time [...] there was a complete separation between killing and curing [...] One profession [...] [was] to be dedicated completely to life under all circumstances.”(6) For example, a study conducted by Rurup et al found that physicians were far less likely to demonstrate tolerant behaviour towards life terminating attitudes (16%) in comparison to nurses (57%) and relatives (90%). (6) This tension plays out in the quality of life debate.

Someone who holds a quality-of-life approach to euthanasia believes that a person with dementia should be granted euthanasia when they feel their life is not worth living. The evidence for quality of life in this case is purely subjective, and will vary from person to person, leaving vulnerable dementia patients at risk of having different values projected onto them by the people around them. In line with this perspective, and in contrast to that of medicine, our palliative care should focus not so much on the protection of life, but of the autonomy of the patient.(7)

things to cite
1. Oxford dictionary 2. Lachin 1998 3. https://link.springer.com/article/10.1023/A:1011385310274 4. https://academic.oup.com/bmb/article/106/1/45/321635 5. https://academic.oup.com/bmb/article/96/1/5/300011 6. https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis 7. Levine M. Psychiatry & Ethics. Braziller, 1972:324–325. (Quoted by Levine as a personal communication from Mead) 8. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1467-8519.2008.00708.x?casa_token=DgHo64Zu9PcAAAAA%3ANvCG7QamDpBdG0DzKpy_UJzZWm4qxlyTQm9Ispb2w8S3yArw9PQb3G-OFItue94lKoOmh-yAiqpR 9. https://pubmed.ncbi.nlm.nih.gov/18757612/ (Dutch euthanasia act list)

Ethics Perspective
hey guys,,, i just thought id put in my first draft for the ethics section,,, before we decided to restructure the chapter.

Given the declining role of religion as a supplier and upholder of moral values in western society, medicine and law have been given increasingly more responsibilities in building society-wide value systems {ref from mcgill study} and upholding the strong enough societal consensus on which healthcare and a trustworthy medical law can be built. The case of euthanasia or physician assisted suicide, medical ethicists have had to increasingly approach the issue secularly and provide arguments that reconcile the continually conflicting values of the right to life, self-determination, dignity, and the power of the state. As it is practiced wholly theoretically, and is not bounded by overarching codes or goals, an ethical exploration is able to subsume the biases that could impair an approach by medics or legal scholars. As such, the ethical arguments for and against euthanasia reach only for the four axioms of formal Ethics [gensler] and for the basic values of the ethicist and those who share them. While lending the discipline apparent [ref] impartiality, Ethics’ lack of a uniform approach has done little to attack the underlying dilemma since the 19th century, though our understanding of the practical and moral consequences of each of the values, once agreed upon, has been well developed [ref]. As many ethical arguments (and popular movements advocating) for euthanasia in general stipulate terminal illness as a necessary condition, many progressive debilitating conditions, like dementia are excluded. Thus, dementia patients, who are very often unable to make legally competent decisions, also excluding them from the necessary condition of informed, competent consent, are left out by ethicists ‘strong’ arguments. Legally, even in countries most permissive of physician assisted suicide in particular The Netherlands, many dementia patients would have no recourse but clauses such as the proposed, but not legalised, “Over 70 and Tired of Life” petition [ref].

Practically, the ethical approach to dementia patients who are believed to want to die, whether or not such a desire is recognised legally, has been reduced to

In Ethics, patients of dementia who are believed to want to die, whether or not such a desire is recognised legally, have been excluded from arguments based on long prognoses, infirm mental capacities, and in proposed laws, by not being old enough. Practically it can be argued that medicine has been more effective in


 * good idea to put this in here --Oliveoilandgarlic (discuss • contribs) 15:58, 14 December 2020 (UTC)

https://heinonline.org/HOL/Page?collection=journals&handle=hein.journals/mlv26&id=401&men_tab=srchresults p389 the difficulty of distinguishing active and passive euthanasia- might be useful? It also explores several of the difficult ethical situation that are allowed or not allowed in different legal systems, especially p391 --Oliveoilandgarlic (discuss • contribs) 14:18, 5 December 2020 (UTC)

https://jme.bmj.com/content/medethics/14/4/184.full.pdf "Demented patients gradually lose their ability to make their own decisions as their cognitive impairment increases." --Oliveoilandgarlic (discuss • contribs) 17:20, 5 December 2020 (UTC)

I have mentioned individualist ethics and philosophy a couple of times in the sociology section, do you have a source/sources I can cite for this individual autonomy approach and the idea that the choice for euthanasia should be souly made based on the individuals needs and wants? --Oliveoilandgarlic (discuss • contribs) 14:48, 10 December 2020 (UTC)

Sociological Perspective
(oliveoilandgarlic)

What is Sociology?
Google definition:
 * -the study of the development, structure, and functioning of human society.
 * -the study of social problems.

Encyclopedia Britannica https://www.britannica.com/topic/sociology
 * -studies the dynamics of society by looking at its organisations and drawing division within it, looking at the interactions between these parts.
 * -studies the "collective aspects of human behaviour" especially looking at the way an individual's group influences their behaviour

https://www.jstor.org/stable/2096141?seq=1 an analysis of the uncertainties around this issue and the confusion interaction between theory and evidence in the evidence's interpretation, mentions as a side point the importance of statistical methods and computing in sociology.

Methods and evidence
Encyclopedia Britannica https://www.britannica.com/topic/sociology :
 * -ecological patterning - the way groups, behaviour, wealth, industry and land value change over time and relate to one another
 * Experimental methods - observing social interactions in controlled enviroments,

https://www.jstor.org/stable/2096141?seq=1 an analysis of the uncertainties around this issue and the confusion interaction between theory and evidence in the evidence's interpretation, mentions as a side point the importance of statistical methods and computing in sociology.

What has sociology got to say about dementia and euthanasia?
https://academic.oup.com/gerontologist/article/59/5/e597/5033595 meta analysis of 26 studies on the experience of carers of people with dementia, found that up to 80% of carer's experience depression. but that the literature is unclear as to a causal relationship. this highlights the sociological focus on human experience and relations etc

https://jamanetwork.com/journals/jamaneurology/article-abstract/2729093 economic status as well of health are greater predictors of dementia than race or culture. This is thought to be due to access to education and nutrition as well as healthcare.

(not that sociological, more medical) https://journals.sagepub.com/doi/full/10.1177/0269216311423443 meta analysis of qualitive research conducted in the uk into the transition into paliative care (the closest thing to euthanasia that exists in the uk) for dementia patients, highlights the lack of the 'long view' in the medical community, also a failure to except that dementia might be a cause of death in it's own right was noted, as patients usually die from complications or accidents caused by the disease rather than the disease itself.

https://journals.sagepub.com/doi/pdf/10.1191/0969733002ne554oa this study interviewing carers at one hospital found that carer's understoon dementia patients decision to starve but thier moral and ethical beliefs hampered them in respecting patients autonomy.

https://journals.sagepub.com/doi/full/10.1177/1039856219878645 in oregon over 50% of people requesting euthanaisa claim 'being a burden to their families' as the main reason for the decision, this article argues that poverty and old age contribute largely to these decisions, creating a class discrepancy.

Biomedicalisation and social construction (medicine)
https://onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.12152 more sociological literature on the dehumanisation of dementia patients by the media, and how this leads to increased use of euthanasia

https://journals.sagepub.com/doi/full/10.1177/1471301217709661 critisizing the 'hegemony of american allopathic medicine' due to is depersonalization of people with dementia using fairly strong language. It argues that the combination of medical attitudes and media presentation conflate dementia with it's final stages (loss of agency, contact with reality and finally life). It critisises the dichotomy between positive and negative aging, and claims that this medical view eclipses the diversity between aging processes and the effects of race, culture and sex on these processes. It argues that is 'a social construct created by people and within social institutions'. 'it says 'If forgetfulness in seniors continues to be medicalised, then we might well find that we have destroyed the precious little space within which we as modern humans can age meaningfully'. criticises the medical perspective as 'oversimplifying the lived experience'- this is a clear example of the clash between empirical scientific evidence and sociology's qualitive more experience focussed aproach

individual patient focus rather than society (medicine)
https://www.researchgate.net/profile/Bernadette_Roest/publication/332237833_The_involvement_of_family_in_the_Dutch_practice_of_euthanasia_and_physician_assisted_suicide_a_systematic_mixed_studies_review/links/5caaebc5299bf118c4ba88be/The-involvement-of-family-in-the-Dutch-practice-of-euthanasia-and-physician-assisted-suicide-a-systematic-mixed-studies-review.pdf doctors struggled to empathise with patients citing existential reasons for thier request for euthanasia, and psychological suffering was given less consideration than physical symptoms. the more sociological aspects of the paper reveal the importance of family relations and 'being a burden' in decision making, doctors are resistant to consider the suffering of the family as a whole due to the medical focus on the experience, especially the physical experience, of thier single patient over wider more sociological considerations of the suffering of the family unit as a whole and the impacts of the implimentation or non implementation of euthanasia at these different levels.

Collective discrimination and lack of individual agency (ethics)
https://rgs-ibg.onlinelibrary.wiley.com/doi/full/10.1111/tran.12055 a critique of the DALY (disability adjusted life year) a common measure used in medicine to evaluate treatment efficiency and make decisions on it's distribution due to it's assumption that the life of someone with a disibility is less valuable than the life of someone without it, it argues this is due to the blurring of the line between the human biological being, and the economy and political sphere. It also speaks of how the DALY measurement leaves out the poorest classes due to thier lack of access to medical care leading to a lack of generation of data. this is a direct tension between the medical and economic perspectives and the ethical and sociological perspectives. although it does not mention dementia specifically it is highly revavent due to the increasing importance of the DALY and QALY in medical decisions.

Conclusion
Should we go with the classic conclusion structure that relates back to the introduction? We can talk about the importance of interdisciplinarity in light of what we've mentioned, and mention the tensions again? --Peppermintdragon (discuss • contribs) 00:32, 10 December 2020 (UTC)

Brainstorm for Euthanasia and Dementia
For the introduction?
 * https://www.sciencedirect.com/science/article/pii/S0140673605678890 global prevalence of dementia - 24.3 million as of jan 2005, 4.6 million new cases per year, was projected to hit 42 million in 2020 and 81 million by 2040 --Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)
 * https://www.alzint.org/what-we-do/research/world-alzheimer-report/ charity collecting large amounts of data and researching dementia releases reports each year many of which may be useful.--Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)
 * https://www.alzint.org/u/WorldAlzheimerReport2016.pdf
 * total worldwide cost of dementia estimated at 818 billion as of 2016 - estimated to increase to a trillion by 2018.
 * People with dementia are likely to also have other mental and health conditions.
 * (from above link)“It is also possible that people with dementia may be being denied the right to receive hospital-based medical interventions that might improve their overall functioning and quality of life (through a variety of mechanisms including diagnostic overshadowing, misperceived contraindications, and failure to address lack of capacity to consent)”
 * --Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)

For the conclusion?

https://www.alzint.org/u/WorldAlzheimerReport2016.pdf parafrased from section 1.7: A well designed phase orientated care pathway designed with multidisciplinary understanding of patient, family and community needs at all systemic levels could present a possible solution to the currently inadequate management of dementia care. --Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)

Medicine vs social care?

https://www.alzint.org/u/WorldAlzheimerReport2016.pdf section 1.5 and 1.6 talk a lot about the issues caused by lack of communication between the healthcare sector (medicine) and the social care sector--Oliveoilandgarlic (discuss • contribs) 16:39, 1 December 2020 (UTC)

Medicine - with some neuroscience and philosophy

Philosophy / ethics - would include some psychology and economic/sociological theory


 * Towards a Theory of Dementia Care: Personhood and Well-being https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S0144686X0000502X
 * Asks the question what does it mean to be a person
 * Argues that a long stay in residential care and the dementing illness gradually takes personhood away.
 * (pg 2) Claims that there is no clear theory of dementia care, but rather ‘crude pragmatism’ and a body of ‘advice’ based on anecdotal evidence but non constitute a proper theory.
 * It argues that the lack of a coherent theory is due to psychiatry’s tendency to focus on the brain rather than the personhood of the sufferer. Making technical rather than personal enquiries.
 * It argues that psychiatry and clinical psychology are ‘extremely reluctant to articulate and implement a concept of the human subject’ due to "great fault-line through work on mental distress"
 * This is a clear disciplinary tension
 * “The first is neurological impairment, which does indeed set upper limits to how a person can perform. The second is the personal psychology an individual has accrued, together with the social psychology with which he or she is surrounded”
 * --Oliveoilandgarlic (discuss • contribs) 16:39, 1 December 2020 (UTC)

Law - with some economics and sociology?


 * Law and medicine- conflict between doctors judgement and knowledge, patient situation and legislation - does a law allowing euthanasia contradicts the hippocratic oath? --whos idea was this?
 * https://www.sciencedirect.com/science/article/abs/pii/S0168851010001934?casa_token=m0RMkcnfuHwAAAAA:qzeopjNWPzCfg0ResElYjlAG6AfEAl2qx-1mQWmvvl8bgmYB3nxN_hvdBDLNpqaRtEeHNXs Compliance with ADEs and do the particularities of the law increase euthanaisa? --Oliveoilandgarlic (discuss • contribs) 16:43, 1 December 2020 (UTC)


 * https://jme.bmj.com/content/medethics/40/2/110.full.pdf argument that the right to refuse food and the right to medical care for the eleviation of suffering amounts to the right to die.
 * In the UK the first two are accepted however the third is rejected constituting a contradiction?
 * https://journals.sagepub.com/doi/pdf/10.1191/0969733002ne554oa specific discussion of the ethics/legality of feeding patients with dementia
 * --Oliveoilandgarlic (discuss • contribs) 16:43, 1 December 2020 (UTC)

Section Ideas:

medical vs ethical vs sociological individual case vs a class viewed holistically;
 * Where the discipline of practiced medicine, often in the form of individual doctors, focuses exclusively on a specific patient and the treatments and therapies that would work best in their interest, other disciplines such as political philosophy or sociology could approach the same issues in a more general sense of discussion and would take into account factors that doctors would be irresponsible to consider such as the wider political implications of a certain therapy’s disproportionate effect on a marginalised segment of the population. -- who wrote this?


 * https://www.bmj.com/content/329/7464/491.short case study of a hospital looking at the care of dementia patients and the use of feeding tubes. They were used ‘Sometimes contrary to the patient's advance directives’ and where quality of life lost and dangers did not outweigh the benefits, they were even used on patients where they were capable but simply experiencing difficulty eating. This highlights the lack of ethical and philosophical consideration in medical practice where decisions are largely made only considering extending life.--Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)


 * Medicine vs palliative care? When does the valiant attempt to cure the disease stop being in the patient’s best interests? Is there a point where palliative care should supplant medicine? -- who wrote this?
 * https://journals.sagepub.com/doi/full/10.1177/0269216311423443
 * “people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life”
 * --Oliveoilandgarlic (discuss • contribs) 16:26, 1 December 2020 (UTC)

Medicine:
https://onlinelibrary-wiley-com.libproxy.ucl.ac.uk/doi/full/10.1111/1467-9566.12152 - how “media framing of Alzheimer's disease has allowed people with dementia to be positioned as non‐persons and therefore susceptible to the ‘temptation of beneficent euthanasia” Alzheimerisation of dementia: how dementia used to be considered a natural part of ageing but is now seen as a biomedical concern - peppermintdragon (discuss • contribs)

http://oro.open.ac.uk/10829/1/jcnur_2006-0670_r4_FINAL.pdf summery of clinical studies on palliative care - conclusion that the palliative care is inadequate
 * Tension with law and the doctors medical knowledge and ethics vs danger of legal action and (in the case of the Netherlands at least) having a duty to kill?


 * Palliative care


 * http://oro.open.ac.uk/10829/1/jcnur_2006-0670_r4_FINAL.pdf summery of clinical studies on palliative care - conclusion that the palialiative care is inadequate


 * https://journals.sagepub.com/doi/full/10.1177/0269216311423443 "It has been argued that failure to recognize timely transitions to palliative care can result in prolonged exposure to aggressive forms of treatment."


 * http://ojs.library.einstein.yu.edu/index.php/EJBM/article/view/42/42 history of the hypocratic oath. It is no longer universally the same; the original prohibited surgery, euthanasia and abortion, but largely it has been updated or new oaths have replaced it to better fit modern values- according to this hypocrates is respected and regarded as the ‘farther of western medicine’ due to his rejection of practicing medicine based on any philosophical or religious framework but rather regarding it as a craft that should be based on observation. --Oliveoilandgarlic (discuss • contribs) 16:54, 1 December 2020 (UTC)

https://books.google.co.uk/books?hl=en&lr=&id=1KcVOUhGDkoC&oi=fnd&pg=PR11&dq=euthanasia+debate+law&ots=XtAXV08osu&sig=4eSmZ6ArwWL2tOf_FoJnLL6-GwQ&redir_esc=y#v=onepage&q=euthanasia%20debate%20law&f=false book with sections written by different experts: medical ethics, law and legal philosophy, ethics and moral theology, private and comparative law --Oliveoilandgarlic (discuss • contribs) 16:54, 1 December 2020 (UTC)

Due care criteria- Dutch Euthanasia Act: 1. There is a voluntary and well-considered request from the patient 2. The patient is suffering unbearably without prospect of improvement 3. The patient is informed about his situation and prospects 4. There are no reasonable alternatives to relieve suffering 5. An independent physician must be consulted 6. Euthanasia or PAS is performed with due medical care and attention - how does inadequate palliative care affect this criteria? - peppermintdragon (discuss • contribs)

Psychology
https://search.proquest.com/docview/222378102?pq-origsite=gscholar&fromopenview=true criticism of a philosophical argument for advance directives from a psychological perspective? --Oliveoilandgarlic (discuss • contribs) 16:59, 1 December 2020 (UTC)

https://jhu.pure.elsevier.com/en/publications/quality-of-life-considerations-in-geriatrics-5 how to measure quality of life and how it’s meaning changes over time. --Oliveoilandgarlic (discuss • contribs) 16:59, 1 December 2020 (UTC)

https://carepartnersor.org/wp-content/uploads/2019/08/State-of-the-Art-Review_-Assessment-and-management-of-behavioral-and-psychological-symptoms-of-dementia.pdf

https://www.cambridge.org/core/journals/international-psychogeriatrics/article/behavioral-and-psychological-signs-and-symptoms-of-dementia-a-consensus-statement-on-current-knowledge-and-implications-for-research-and-treatment/C058C8D74769AE21AB4C71D1940867B9 Consensus Statement Behavioral and Psychological Signs and Symptoms of Dementia: A Consensus Statement on Current Knowledge and Implications for Research and Treatment - basically making a distinction between the cognitive affects and the behavioural effects. The latter incurs most of the societal cost - which may have some influence on the interaction with economics as to decisions for treatement/euthanasia. --Oliveoilandgarlic (discuss • contribs) 16:59, 1 December 2020 (UTC)

https://www.bmj.com/content/312/7024/153.short 47% of 15 females caring for people with dementia were found to be depressed. - stratified study of 700 carers - this is far too small of a sample to give much weight to.--Oliveoilandgarlic (discuss • contribs) 16:59, 1 December 2020 (UTC)

Philosophy/ethics
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1467-8519.2008.00708.x?casa_token=DgHo64Zu9PcAAAAA%3ANvCG7QamDpBdG0DzKpy_UJzZWm4qxlyTQm9Ispb2w8S3yArw9PQb3G-OFItue94lKoOmh-yAiqpR philosophy - (clinical-ethical arguments) (personalism - the individual is the locus of free activity?) this one is good, summarises all the main disciplinary perspectives, however we may struggle make our chapter 'original' as many of the the tensions involved here are well documented. --Oliveoilandgarlic (discuss • contribs) 17:07, 1 December 2020 (UTC)

https://link.springer.com/article/10.1007/s00415-016-8095-2 - summary and some politics and ethics

https://www-jstor-org.libproxy.ucl.ac.uk/stable/24439802?seq=1#metadata_info_tab_contentsSpeciesism and Moral Status - Peter Singer


 * Lots of interesting concepts about the value of human life, dignity, how this relates with cognitive disabilities (some parts a bit irrelevant though because he relates to other animals) - peppermintdragon (discuss • contribs)

https://journals-sagepub-com.libproxy.ucl.ac.uk/doi/full/10.1177/1039856219878645 - how euthanasia can become discriminatory - Peppermintdragon (discuss • contribs) https://jme.bmj.com/content/14/4/184.short autonomy of dementia patients (interview based n=21) Tension with law - although the individual decision to want to end one's life might be taken autonomously - it’s not clear that they would have made this decision if they were provided with better care so their life was more bearable.
 * Is the responsibility for these deaths with the state or individual, should the law facilitate individual’s suicide due to the states neglegance? EVIDENCE - doctor/ individual looks at their case and their life and how the disease is likely to progress to make the decision, philosopher uses methods like extrapolation and evidence such as axioms or ethical intuitions to come to conclusions- often jumping to the extreme.

--Oliveoilandgarlic (discuss • contribs) 17:05, 1 December 2020 (UTC)

Economics/politics
https://rgs-ibg.onlinelibrary.wiley.com/doi/full/10.1111/tran.12055 - “the paper demonstrates a perpetual devaluation of lives within a prevailing economic system that searches out, and targets, ‘profitable’ populations, as exemplified by the current pharmaceutical industry and supporting apparatus that pursues the protection of profits over the preservation of lives.”, “this paper argues that DALYs are symptomatic of a wider shift within global health governance and constitutive of a new biopolitical regime – where the body is incorporated within political and economic systems – by judging an individual’s ‘worth’ through their economic productivity.” - Peppermintdragon (discuss • contribs)

Law
Even in areas where euthanasia is legal, it is still considered an excusable homicide, like self defense (maybe not the case medically/ethically) https://www.sciencedirect.com/science/article/pii/S0168851010001934?casa_token=m0RMkcnfuHwAAAAA:qzeopjNWPzCfg0ResElYjlAG6AfEAl2qx-1mQWmvvl8bgmYB3nxN_hvdBDLNpqaRtEeHNXs - law, advance directives for euthanasia (qualitive study n=434)

Sources https://www.sciencedirect.com/science/article/pii/S0168851010001934?casa_token=m0RMkcn

https://www.sciencedirect.com/science/article/pii/S0168851010001934?casa_token=m0RMkcn

https://link.springer.com/article/10.1007/s00415-016-8095-2 - not that academic but a good overview of different arguments - Peppermintdragon (discuss • contribs)

oliveoilandgarlic

 * In discussion decided too general and although power dynamics and different disciplinary views are prevalent actual disciplinary tensions are too limited.

I think this may be the best of the projects we have so far - as we can look at the relationships between these ethno-national groups through the lense of different disciplines and find out how they were related and what factors increased divisions from many perspectives: here’s the start of a brainstorm for this project:
 * If we choose this one we should focus on a couple of these which clearly clash in their analysis of the power dynamics in this situation and maybe link a few more or at least some of the methods from them to back up the point.
 * For example if we took anthropological perspective, economic and biological perspective:
 * Anthropological perspective could include psychoanalytic theory, history, and social psychology
 * Economic perspective could include geography, polotics/ir, and possibly greivience studies perspectives
 * Biological perspective could include psychology, anthropology, game theory, race studies, etc etc

psychology and social psychology (psychology of killing for your group, how we define our groups, dehumanisation etc - there must be a lot of literature here)

Economic (can racial and ethnic conflicts be explained by resource competition, how does wealth affect tolerance of 'others' and likelihood of forming ingroups and outgroups) national, racial and ethnic economic competition etc.


 * National Tolerance in the Former Yugoslavia (Randy Hodson, Dusko Sekulic, and Garth Massey)

https://www.journals.uchicago.edu/doi/abs/10.1086/230453 "The association of unemployment with intolerance and outbreaks of violence in areas with greater national diversity support theories of ethnic competition."

IR/politics(ideologies and national political structures), anthropological(cultures of groups), biological(how do biological differences play into racism - do 'racist genes' protect themselves from a game theory perspective)

Psychoanalytical (how do national myths and stories and the cultural productions of a group tell us how that group ‘thinks’ and behaves) to what extent can the myths of these cultures be seen as the reasons for their conflicts

Historical (how do the histories of ethnic groups or races affect their narratives (link to psychoanalytic theory) and how do nations form usually, was the formation of the ex-yugoslavian states different from normal- if so why, was yugoslavia a failed unification all along or a dissolution(link to political and anthropological theory) etc

Geographical perspective (resources, geographic features forming national boundaries)

t's:
Quote from: https://pubmed.ncbi.nlm.nih.gov/15514224/ : “The creation of nation-states in Europe has generally been assumed to be intrinsic to modernization and to be irreversible. The disintegration of Czechoslovakia, the Soviet Union, and Yugoslavia demonstrates that the process is not irreversible. I argue that in the case of Yugoslavia, (1) disintegration was caused by the interaction between domestic policies with regard to nationalities and integration into the global economy and (2) the impact of the disintegration of the federation on health care and public health systems has been profound. Improving and converging measures of mortality before the collapse gave way to increasing disparities afterward. The lesson is that processes of individual and social modernization do not result in improvements in health and well-being that are necessarily irreversible or shared equall"

Peppermintdragon's Ideas
Truth in Literary Theory (think of a specific book/play/text- can explore how it’s viewed from different theories eg. feminist, marxist, ecocritical)

Truth in the emergence of race (how it’s a social construct, can include biology)
 * I explained less well yesterday oops but please read “Race and the construction of Human Identity” https://anthrosource.onlinelibrary.wiley.com/doi/epdf/10.1525/aa.1998.100.3.690
 * oliveoilandgarlic response to race idea:
 * This is fascinating, it also links very clearly with the death of yugoslavia idea - and the idea of race as a social construct and ethnicity as the biological element that is poorly correlated with race is a brilliant observation.
 * We could combine this project with the yugoslavia project and do something like power and ethnic groups in the yugoslavia (1900 - present if both dissolutions are covered or in the balkan war if not) or Power in the death of Yugoslavia: a case study in the formation of radical racial groups or something along those lines
 * Lots of work on the politics and anthropology:
 * https://books.google.co.uk/books?hl=en&lr=&id=v-VWhYkECOMC&oi=fnd&pg=PP11&dq=yugoslavia&ots=SNfLjnxNLg&sig=bgpDAg_cCJcR43zDYS-RLt8pN8o&redir_esc=y#v=onepage&q=yugoslavia&f=false
 * Historical perspective : Yugoslavia died twice. This should give us more to work with although maybe we should just focus on one instance https://books.google.co.uk/books?hl=en&lr=&id=AZ1x7gvwx_8C&oi=fnd&pg=PR10&dq=yugoslavia&ots=19h5DM-irU&sig=aAqs7Z4OKjMHrX08n-kGARNyE7I&redir_esc=y#v=onepage&q=yugoslavia&f=false
 * Historical perspective with reference to mythology, focussed on the serbs
 * https://books.google.co.uk/books?hl=en&lr=&id=4b4JCAAAQBAJ&oi=fnd&pg=PR8&dq=yugoslavia&ots=_BeeZMv6KP&sig=L5G12v4kDFxEC2USVvW4M2iru7o&redir_esc=y#v=onepage&q=yugoslavia&f=false
 * A historical and detailed political perspective on yugoslavia published before the war in the 90’s https://books.google.co.uk/books?hl=en&lr=&id=Zf6tDwAAQBAJ&oi=fnd&pg=PP1&dq=yugoslavia&ots=q1b7KJGIYs&sig=1s25JgILFArK2YoJu9FlzYQ1nv0&redir_esc=y#v=onepage&q=yugoslavia&f=false

Truth in emotionally abusive relationships (psychological, emotional, philosophical)

oliveoilandgarlic Ideas
Power in the death of yugoslavia (economics, anthropology, politics/IR, national narratives) IDENTITY
 * I like this one because it focuses on a specific event and I think it'll be easier to explore a singular event from many different perspectives than a timeline --s

Truth in the interpretation of nietzsche
 * In discussion it was decided that reading nietzche and trying to encompass multiple perspectives clearly within the word limit was beyond the scope of this project.

The rift between psychology and psychoanalysis (history or truth or evidence, as the divide is mostly caused by different definitions of truth/evidence)
 * Give this a read in reference to this project https://psycnet.apa.org/record/1987-29376-001?doi=1
 * In discussion decided it was more complex and general than can be easily encapsulated in 1200 words, as the psychoanalytic and psychology disciplines are not any of our specialisms and the psychoanalytic discipline is very nebulous.

t's Ideas
End of life care - Euthanasia, the question of extending life against it's quality.
 * In reference to dementia? - psychology, philosophy, neuroscience, political
 * Innitial sources sweep:
 * oliveoilandgarlic:
 * https://link.springer.com/article/10.1007/s00415-016-8095-2 - summery and some politics and ethics
 * https://www.sciencedirect.com/science/article/pii/S0168851010001934?casa_token=m0RMkcnfuHwAAAAA:qzeopjNWPzCfg0ResElYjlAG6AfEAl2qx-1mQWmvvl8bgmYB3nxN_hvdBDLNpqaRtEeHNXs - law, advance directives for euthanasia (qualitive study n=434)
 * https://onlinelibrary.wiley.com/doi/full/10.1111/j.1467-8519.2008.00708.x?casa_token=DgHo64Zu9PcAAAAA%3ANvCG7QamDpBdG0DzKpy_UJzZWm4qxlyTQm9Ispb2w8S3yArw9PQb3G-OFItue94lKoOmh-yAiqpR philosophy - (clinical-ethical arguments ) (personalism - the individual is the locus of free activity?) this one is good, summarises all the main disciplinary perspectives, however we may struggle to get the originality points as the tensions involved here are very well documented.
 * https://jhu.pure.elsevier.com/en/publications/quality-of-life-considerations-in-geriatrics-5 how to measure quality of life and how it’s meaning changes over time.
 * https://search.proquest.com/docview/222378102?pq-origsite=gscholar&fromopenview=true criticism of a philosophical argument for advance directives from a psychological perspective?
 * t's
 * https://onlinelibrary-wiley-com.libproxy.ucl.ac.uk/doi/full/10.1111/1467-9566.12152 - how “media framing of Alzheimer's disease has allowed people with dementia to be positioned as non‐persons and therefore susceptible to the ‘temptation of beneficent euthanasia”
 * Alzheimerisation of dementia: how dementia used to be considered a natural part of ageing but is now seen as a biomedical concern
 * https://link.springer.com/article/10.1007/s00415-016-8095-2 - not that academic but a good overview of different arguments