Human Rights, Treatment Inequalities and the Lottery for Treatment Debate David AndersonFord AREC Co

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Human Rights, Treatment Inequalities and the
Lottery for Treatment DebateDavid
Anderson-Ford(AREC Conference 14th March 2008)
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Research Funding

• Culyer Funds
• Best Research for Best Health (DH 2006)
• Implications for staff and students
• Jane Tomlinson (2006) drug trials

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Restricted Funding

• Reawakens a number of debates-
• Rights and obligations
• The right to treatment
• The right to the best
• The right to life?

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Universal Declaration of Human Rights 1948
Article 25

• Everyone has the right to a standard of living
  adequate for the health and well-being of himself
  and of his family, including food, clothing,
  housing and medical care and necessary social
  services.

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Article 2 European Convention on Human Rights 1950

• 1 Everyones right to life shall be protected by
  law. No one shall be deprived of his life
  intentionally save in the execution of a sentence
  of a court following his conviction of a crime
  for which this penalty is provided by law.
• 2 Deprivation of life shall not be regarded as
  inflicted in contravention of this Article when
  it results from the use of force which is no more
  than absolutely necessary
• (a) In defence of any person from unlawful
  violence
• (b) In order to effect a lawful arrest or to
  prevent the escape of a person lawfully detained
• (c) In action lawfully taken for the purpose of
  quelling a riot or insurrection.

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Where demand demonstrably exceeds supply

• Right to life for all?
• Impossible?
• Compromised?
• Prioritisation

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Weale (1998)

• A comprehensive service?
• Perhaps we can have only a comprehensive
  service of high quality, but not one available to
  all. Or a high quality service freely available
  to all, but not comprehensive. Each of these
  three possibilities defines a characteristic
  position in the modern debate about health care
  costs and organisation.

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NHS Reality

• Rationing by restrictive access
• Cosmetic
• Infertility
• Sterilisation reversal
• Or
• Dilution of Quality
• Delays
• Waiting Lists

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Does not the right to life at least imply the
right to be alive?

• Treatment
• Rigorously researched
• Evidence based
• i.e. research ? effective treatment ? no returns

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A Legal Perspective

• The courts reluctance to interfere
• Slim chance of judicial review success
• No apparent enforceable legal right to general
  health care
• European Convention-
• Comparatively limited range of rights
• Many are qualified on a utilitarian basis

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Article 8RIGHT TO RESPECT FOR PRIVATE AND FAMILY
LIFE

• Everyone has the right to respect for his private
  and family life, his home and his correspondence.
• There shall be no interference by a public
  authority with the exercise of this right except
  such as is in accordance with the law and is
  necessary in a democratic society in the
  interests of national security, public safety or
  the economic well-being of the country, for the
  prevention of disorder or crime, for the
  protection of health and morals, or the
  protection of the rights and freedoms of others.

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The Case Law

• R v Central Birmingham HA Ex p. Walker (1987)
• (The court can) only intervene where it was
  satisfied that there was a prima facie case, not
  only of failing to allocated resources in a way
  in which others would think that resources should
  be allocated, but of a failure to allocate
  resources to an extent which was Wednesbury
  unreasonable.

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But Contrast

• R v North West Lancashire HA Ex p A, D and G
  (2000) - gender re-assignment surgery considered
  a low priority

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National Health Service Act 1977 (As Amended By
National Health Service And Community Care Act
1990 And Health Act 1999)

• Section 3
• It is the Secretary of States duty to provide
  throughout England and Wales, to such extent as
  he considers necessary to meet all reasonable
  requirements.............
• R v Secretary of State for Social Services, W
  Midlands RHA and Birmingham AHA (Teaching), ex
  parte Hinks (1980)
• R v Secretary of State for Social Services, ex
  parte Walker (1987)
• R v Gloucester County Council, ex parte Barry
  (1997)

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R v Cambridge HA, ex parte B (1995)

• refusal to fund further experimental treatment
  for 10-year old girl with acute myeloid
  leukaemia.
• DH guidance re the funding of unproven treatment.
  Substantial expenditure on treatment with such a
  small prospect of success would not be an
  effective use of resources.
• Laws J (Article 2) Of all human rights, most
  people would accord the most precious place to
  the right to life itself.

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On appeal-

• Bingham MR
• Laws contention overturned - noting the complex
  policy nature of allocating a limited budget to
  the maximum advantage of the maximum number of
  patients.
• Not the role of the courts to determine the
  merits of the dispute
• The fact that life-saving treatment was at issue
  did not change this.

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A conflict is thus revealed between a utilitarian
and a rights-based positionBut see Simms v Sims
(2002) - possibility of unquantifiable benefit
and the fact that there was no alternative
treatment
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Sanctity of Human Life

• Most ethical positions hold human life to have
  intrinsic value
• But
• What value?

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Keown (1997)

• vitalism human life had absolute moral value, so
  that it is wrong either to shorten it or fail to
  lengthen it.
• Sanctity of life the view that it is always
  wrong to intentionally kill a human being, but
  there is no moral obligation to preserve life at
  all costs. Further, there is no obligation to
  administer or undergo a treatment which is not
  worthwhile. Since the worth of treatment involves
  an evaluation of whether the treatments benefits
  are proportionate to its burdens, there is some
  scope for different judgements.
• Quality of life what matters is the worth of
  the patients life, and it is permissible to end
  the life of a person when it is not worth living.

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Bland (1993)

• Sanctity of life is not an absolute
• Concept of futility - carries with it the real
  danger that it can be used as a means to the
  disguised and arbitrary rationing of resources
  (Mason MacCall Smith (2002))

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Right to Treatment and the Right to Determine
Treatment

• Human Rights Act 1998
• NHS Trust A v M (2001)
• Pretty (2001)
• The right to life does not create a right to
  self-determination in the sense of conferring on
  an individual the entitlement to choose death
  rather than life.
• R (Burke) v GMC (2005)

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European Convention on Human Rights and
Biomedicine 1997

• Article 2 Primacy of the human being The
  interests and welfare of the human being shall
  prevail over the sole interest of society or
  science
• Article 3 Parties, taking into account health
  needs and available resources, shall take
  appropriate measures with a view to providing
  equitable access to health care of appropriate
  quality.

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• Article 14 non discrimination provisions.
• Disability Discrimination Act 1995

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Special Considerations

• Re A (children) (conjoined twins surgical
  separation) best interests
• Mental Capacity Act 2005 S. 35 affords evidence
  of the implementation of Nuremberg Helsinki and
  Article 14 - justice, fairness and equality It
  is important that research involving people who
  lack capacity can be carried out, and that it is
  carried out properly. Without it, we would not
  improve our knowledge of what causes a person to
  lack or lose capacity, and the diagnosis,
  treatment, care and needs of people who lack
  capacity. (MCA Code 2007)

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MCA Conditions

• An appropriate body (REC) can only approve a
  research project if the research is linked to
• An impairing condition that affects the person
  who lacks capacity, or
• The treatment of that condition.
• Must be some chance of benefit to provide
  knowledge about cause or treatment, but then risk
  must be negligible and not unduly invasive or
  intrusive.

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Conclusions

• The ethics of priority setting tension between
  utilitarian and deontological approaches where
  individuals faced with the prospect of death
  costs and benefits. Is there an obligation to
  intervene?
• The law imposes no such obligation
• Is a court an appropriate forum for resolution
• A more public debate for resourcing research and
  treatment?