Ethics of Resource Allocation and Human Rights

Professionalism and Patient Safety 2017

Please look through the slides prior to the session and come prepared to ask questions or clarifications 2

Ethics

Is the right course of action always obvious? Action or decision should withstand criticism; i.e., the reasoning process

Aristotle – Character and Reasoning

10-Feb-17 © The University of Sheffield Decisions that 3 withstand criticism • Valid arguments – premises lead logically to the conclusion so if the premises are true, then the conclusion must be true. • Avoiding logical fallacy – a mistake in the logical relation between an argument’s conclusion and its premises; e.g., bifurcation – claiming that only two alternatives exist (Richard Cooper’s phase 1 Lecture on Philosophical bases….)

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• Is Principlism alone adequate? • Consequentialism • Casuistry? – extracting theoretical rules from specific instances, interpretation of ethical principles or cases…. • Deontology • Virtue • Care Ethics

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Breast cancer mum back in High Court for Herceptin battle

Free IVF care 'denied to many'

Secret NHS plan to ration patient care

Cancer victim denied life-prolonging drugs on NHS is given hope with £10,000 anonymous donation

10-Feb-17 © The University of Sheffield Learning outcomes 6 • An understanding of • the key ethical theories of resource allocation • the challenges of ‘individual responsibility’ in distributive justice; and relevance of human rights to resource allocation • the factors that may form a part in the decision making models in distributive justice • And develop awareness of topical issues around resource allocation

10-Feb-17 © The University of Sheffield 7 Rationing needs have increased because..

• Shift from acute illness to chronic long- term • Normal physiological events medicalised • Increase in choice and increase in expensive drugs (This is not an exhaustive list)

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• 2011/12 -2014/15, NHS spending will increase by only 0.4 per cent in real terms (House of Commons Health Committee, 2010). • On average, 1950 -2000 : 3.48 % per cent per year, rising to 6.56 % 1999/2000 -2010/11 (Appleby et al., 2009). http://www.kingsfund.org.uk/audio-video/john- appleby-nhs-productivity-challenge

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What is Just(ice) healthcare?

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Allocation theories based on

• Egalitarian principles • Maximising principles • Libertarian principles

10-Feb-17 © The University of Sheffield 11 Egalitarian principles

• NHS was founded on a requirement to provide all care that is necessary and appropriate to everyone (equal access)-Aristotelian equality/justice

• Challenge: How to resolve the tensions between egalitarian aspirations and finite resources? (Rawlins and Dillon)

10-Feb-17 © The University of Sheffield 12 Maximizing principle

• Criteria that maximize public utility

• Who is best to decide this? Should doctors be involved in rationing decisions?

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Libertarian approach

• – each is responsible for their own health, well being and fulfilment of life plan.

An Example èèèèè

10-Feb-17 © The University of Sheffield The German Health incentive 14 Schemes? (BMJ, v339,p725,2009)

• Contributions are a percentage of income earned; so well off shoulder more burden

• Incentives to change individual health behaviour. E.g., bonuses (cash, sports or kitchen eqpt, or reduction for insurance contributions) for participation in routine screening, health promotion and check-up programmes.

• The pay out must come from the savings made by

better10-Feb-17 © The health University of Sheffield behaviour. 15

• Incentives for early detection and treatment of chronic disease. • Compliance in prevention and treatment reduces co-payment by patient. • No claim benefits for reduction/responsible use of resources. • Carrot or stick? E.g., max co-payment for some cancers was increased from 1 to 2% non compliance.

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• The question of equity: Private programmes attract or retain higher income groups because they contribute more and cost less.

• To what extent bonuses result in Change of behaviour?

• Socio-Economic Status differences in incentive use?

• Should doctors police health behaviour?

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leading risk factors contributing to disease burden in high income countries (WHO, 2002)

• Tobacco • 12.2 • Blood pressure • 10.9 • Alcohol • 9.2 • Cholesterol • 7.6 • Overweight • 7.4 • Low fruit and vegetable • 3.9 intake • 3.3 • Physical inactivity • 1.8 • Illicit Drugs • 0.8 • Unsafe sex • 0.7

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WHO 2002 20 In the UK in 2010 • 26% of both men and women aged 16 or over were classified as obese (BMI> 30kg/ m2). • 41% of respondents (aged 2+) said they made walks of >20 minutes at least 3 times a week • 20% of respondents reported that they took walks of at least 20 minutes “less than once a year or never” in GB.

10-Feb-17 © The University of Sheffield 21 In the UK in 2010

• Significant upward trend in household expenditure on eggs, butter, beverages, sugar and preserves.

• Downward trend with fruit and vegetables

10-Feb-17 © The University of Sheffield What are the 22 arguments for and against?

• Can individuals be held accountable (how and to what extent is debatable) for their current or future health?

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• Obligation to help others in need regardless of why they are there in the first place provided that helping would not impose unacceptable sacrifices on others.

A person who is unwell/poor health cannot exercise political and civil rights.

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• Establishing causality between behaviour and the need for treatment is often uncertain/ impossible.

• Justified inequalities (smokers) moralistic judgements (eating or exercise habits)

• A person’s productivity is influenced by many factors over which the person has little control

• Measuring the value of contribution

10-Feb-17 © The University of Sheffield Motivation for unhealthy 25 behaviour? • The costs of most unhealthy activities impact in the future, but the benefits from them occur in the present

• The challenge of affluence to self control

• Social networks – obesity (Christakis and Fowler, 2007).

• Backward looking vs. forward looking

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• The intrinsic value of every person’s life; and concern to this AND • Personal responsibility for the governance of our own life.

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Sustainability in Resource Allocation The Hippocratic Canon offers the twin injunctions to do good and not to do harm. These ethics apply not only to individual patients, but to those systems that sustain human health, and not just to the current but to future generations. Sustainability also highlights prevailing tensions between freedom of action (autonomy) and the ethic of justice, as those most affected by harms to the global environment are those least responsible for causing them. The doctor will be able to recognise and articulate his or her own values and principles in relation to sustainability and, by upholding these values, to act with integrity.(13)

…..From the Centre for Sustainable Healthcare

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What is sustainable medical practice?

Can you think of examples and challenges?

The Brundtland Commission’s definition of a sustainable process is one that “meets the needs of the present without compromising the ability of future generations to meet their own needs.”

Haines A, Dora C. How the low carbon economy can improve health. BMJ. 2012;344(mar19 1):e1018-e1018. doi:10.1136/bmj.e1018.

Costello A, Abbas M, Allen A, et al. Managing the health effects of climate change. The Lancet. 2009;373(9676):1693-1733. doi:10.1016/ S0140-6736(09)60935-1. 10-Feb-17 © The University of Sheffield 29

The rule of rescue (Jonsen)

• Can we fund expensive treatment to prolong life short term?

• How does this marry with equal concern and self determination; does this maximise good with fairness?

10-Feb-17 © The University of Sheffield Eliminate choice 30 Restrict choice: regulate to restrict the options available to people

Guide through disincentives: use disincentives to influence people to not pursue certain activities

Guide choice through incentives: use financial and other incentives to guide people to pursue certain activities

Guide choice through changing the default: make ‘healthier’ choices the default

Enable choice: to change behaviours

Inform and educate

Do nothing /monitor 10-Feb-17 © The University of Sheffield 31 What are the current key resource allocation challenge in our healthcare system?

Organ transplantation, expensive treatments to few leaving others without, lifestyle inflicted conditions….What else?

10-Feb-17 © The University of Sheffield 32 Cases you should know about and implications to practice

• R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014]

• Montgomery v Lanarkshire Health Board (2015)

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Human Rights in Medical Ethics

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• Are Rights only about legality?

• How about the value of moral rights?

• Can a rights discourse help secure the best interests of dementia patients?

10-Feb-17 © The University of Sheffield Rights that are frequently 35 engaged in healthcare

• Art 2 – the right to life (limited)

• Art 3 – the right to be free from inhuman and degrading treatment (absolute)

• Art 8 – the right to respect for privacy and family life. (qualified)

• Article 12 – right to marry and found a family

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R v Havering London Borough Council: R v Coventry City Council, 2008

• Medical evidence indicates that mortality rates amongst care home residents who were moved were higher than in those who were left in place.

• Therefore is the council in breach of the resident’s article 2 rights in deciding to close the home?

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• Risk to the resident was found to be no more than speculative and could be minimised by careful management.

• Also individual needs assessment for each resident.

10-Feb-17 © The University of Sheffield 38 Mencap inquiry finds institutional discrimination against people with learning disabilities

• Ignoring family concerns • Failing to diagnose serious illnesses • Denying basic nursing care or pain relief • Staff attitude that some LD patients quality of life is too poor to be worth saving • The Guardian, 2 January 2012

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ARTICLE 14 The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.

10-Feb-17 © The University of Sheffield 40 Rights

Underlying assumptions

• The irreducible moral status of individuals demands that people are treated in ways that are compatible with that moral status

• These claims can be made against a duty bearer such as the state and are universal

10-Feb-17 © The University of Sheffield Human Rights Act 41

• Forms part of the decision making processes when making decisions about people’s rights

• Is part of all policy making

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The NHS Constitution

10-Feb-17 © The University of Sheffield Problems with human 43 rights • Are they universal? Female genital mutilation, judicial executions

• Which interests are significant enough to justify ennobling a human right?

• All basic rights are claim rights

• Can absolute claims conflict? All rights are interdependent and inter-related

10-Feb-17 © The University of Sheffield 44 Human Rights Act 1998 (in force since 2000)

Gives further effect to the rights in

• European Convention on Human Rights (1950, 1953)

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Health is the state of complete physical, mental and social wellbeing and not merely the absence of disease or informity...the highest attainable level of health is the fundamental right of every human being. (Preface to the WHO constitution) The Lancet, 2007)

• Art 2 – the right to life (limited)

• Art 3 – the right to be free from inhuman and degrading treatment (absolute)

• Art 8 – the right to respect for privacy and family life. (qualified)

• Article 12 – right to marry and found a family

• Art 2 – the right to life (limited)

• Art 3 – the right to be free from inhuman and degrading treatment (absolute)

• Art 8 – the right to respect for privacy and family life. (qualified)

• Article 12 – right to marry and found a family

• right to protection from torture, inhuman and degrading treat ment and punishment (Article 3),

• the prohibition on slavery and enforced labour (Article 4)

• protection from retrospective criminal penalties (Article 7)

• These rights are limited under explicit and finite circumstances,

• e.g., right to liberty (Article 5)

• Article 8(2) - state can restrict the right to respect for private and family life; • To protect health or morals, or the protection of the rights and freedoms of others; social needs 10-Feb-17 © The University of Sheffield Viewing dementia as a 50 disability with scope for a human rights discourse What is Dementia?

How might a rights discourse be applied in the best interests of people with dementia?

Individual Rights vs. Collective Good?

• Human rights but what value do you place on an individual’s autonomy? (Liberalism)

• Should vaccinations become compulsory? • What about blood/organ donations? • Minority group representation in policy? • Is screening a form of collectivism?

10-Feb-17 © The University of Sheffield 54 Is there a right to medical treatment? • Article 2 - There is a positive obligation upon the State; to take appropriate steps to safeguard life

• But cannot impose an impossible or disproportionate burden on the authorities.

No absolute duty No positive obligation on the Secretary of State to provide funds

Duty to provide services to such extent as he considers necessary to meet all reasonable requirements

Judicial Review

• Opportunity for an individual to challenge the exercise of power by a public body.

Exceptionality criteria

It is proper for an authority to adopt a general policy for the exercise of such an administrative discretion, to allow for exceptions from it in ‘exceptional circumstances’ and to leave those circumstances undefined’.

• Refusing treatment because of advanced age alone - Article 2 and Article 14 (prohibition on discrimination).

• Deny resources because of gender or sexuality - Article 14

Clinical Effectiveness Cost Effectiveness

• The intrinsic value of every person’s life; and concern to this

• Personal responsibility for the governance of our own life.

Questions

• Why is some awareness of human rights in policy is relevant to you?

• Please give examples where human right arguments or acts can be applied to clinical practice?

• Judgement of disease burden (judges: physicians, patients and society) - High, moderate, low • Effectiveness (utilitarianism) - High, moderate, small, unknown • Cost effectiveness (egalitarian) - High, moderate, low, negative • Other factors such as total costs at society level, or individual payment

• Involvement and oversight by a legitimate institution, meaningful public engagement • transparent decision making, • reasoning according to information and principles that all can accept as relevant, and • Procedures for appealing and revising individual decisions.

Worth a few minutes….

• http://www.theguardian.com/society/2016/jan/18/10- truths-about-britains-health-service

• http://www.gmc-uk.org/guidance/20706.asp

• http://www.theguardian.com/commentisfree/2015/oct/24/ growing-old-silicon-valley-prescription-for-misery? CMP=Share_iOSApp_Other