Journal of Medical Ethics 2001;27:388–392
Equality and disability symposium
Disability matters in medical law
Kate Diesfeld Auckland University of Technology, Auckland, New Zealand
Abstract
The British Parliament stated that health services
would be covered by the Disability Discrimination Act
1995 (the act). However, when people with disabilities
are at their most vulnerable, for example when in
hospital or subject to medical procedures, the
antidiscrimination law fails them. A review of cases
indicates that when people with disabilities are subject
to medical treatment, the legislative protections are
allowed to vanish. Instead, medical decisions are
justified on obscure notions such as “best interests”,
often with irreversible or even terminal results. This
article examines the relevant provisions and limitations
of the act, the features of notable non-treatment
decisions, and the act’s potential to guide future
decision making. It argues that antidiscrimination
legislation should be assertively applied to protect
vulnerable people.
(Journal of Medical Ethics 2001;27:388–392)
Keywords: Disability; learning disability; persistent vegetative state; discrimination; human rights
Introduction
Generally speaking, it is both immoral and unlawful to discriminate between people on the ground of
disability. The gravity and variety of recent cases
that involve people who cannot advocate for themselves demands close legal scrutiny. People with
disabilities may be medically, socially, and politically vulnerable. Likewise, patients who historically
have not been conceptualised as disabled may be
protected under the Disability Discrimination Act
1995. The legislation may oVer one legal tool for
advocates and scholars who have expressed concern regarding controversial medical decisions
involving vulnerable people. For purposes of this
article, vulnerable people are defined as those who
have conditions that have been relevant to the cited
cases such as learning disability, cerebral palsy, epilepsy, microcephalia, and persistent vegetative
state. On this basis, the implications of the act will
be explored.
What is disability?
The act provides protection for an individual who
has a disability (s 1(2)) or has had such a disability
(s 2). Four elements must be satisfied for a person
to be protected under s.1(1):
a) there must be a physical or mental impairment
b) the impairment must adversely aVect the
individual’s ability to carry out normal day-today activities
c) the adverse eVect must be substantial
d) the adverse eVect must be “long term”.
An impairment qualifies if it aVects one or more of
the following: mobility; manual dexterity; physical
coordination; continence; ability to lift, carry or
otherwise move everyday objects; speech, hearing
or eyesight; memory or ability to concentrate, learn
or understand, and perception of the risk of
danger.1 The legislative intent is to aVord protection to people with disabilities in the areas of
employment, housing, goods, and services. Inclusion of health services was aYrmed during
parliamentary debates.2
Many people who have been the subject of medical law cases should qualify as disabled under the
act, which was intended to protect a wide range of
people with disabilities, including those with mental impairments. For example, a person in a persistent vegetative state (PVS) has profound mental and
physical impairments that eVect her ability to conduct ordinary life activities. Likewise, a person with
learning disabilities who is incapable of consenting
to or refusing medical procedures should qualify for
protection on the ground of mental impairment.
People with disabilities who cannot participate in
medical decisions are particularly at risk in the
medical domain and require the greatest advocacy.3 4 Accordingly, the act’s potential should be
zealously explored for this most vulnerable group.
It is widely accepted that human beings have
worth just because they are human beings and not
by virtue of their capacities.5 6 Bodily integrity,
sanctity of life, and freedom from coercion are
cherished values that apply to all of us, regardless of
the type or degree of disability we might have. One
would expect the act to include consideration of
these core principles, not least since it provides
protection where less fundamental matters, such as
employment, are concerned. Nevertheless, a
number of controversial medical decisions—including tissue extraction, sterilisation, non-treatment,
and psychiatric detention—have been made without reference to the act.7 However, medical
decisions should not be outside the act’s remit; they
are deserving of scrutiny precisely because they
relate to the most fundamental aspects of existence,
including its cessation.
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Diesfeld
What is discrimination?
The definition of discrimination under the act is
problematic because it allows justifications for
otherwise discriminatory practices. The act incorporates exceptions into the definition, diluting the
protections. It allows direct discrimination, ie the
treating of a person less favourably on the basis of
disability, if it can be legally justified.
Part III of the act provides a two-prong definition
of discrimination. A service provider discriminates
if he or she treats a disabled person less favourably
for a reason related to the person’s disability and
which cannot be justified under the act (s20 (1)).
Also, a provider discriminates by not providing a
disabled person with a reasonable adjustment
where required to do so under s 18 and this cannot
be justified under the act (s 20(2)). Discrimination
is prohibited by:
a) refusing service;
b) treating a person less favourably in the standard
of service, or in the manner in which it is
provided; or
c) providing the service on less favourable terms.
If the provider fails to make reasonable adjustments
under s 21, and the eVect makes it impossible or
unreasonably diYcult for a disabled person to make
use of a service, this is also unlawful (s 19(1)(b).8
Five circumstances allow a service provider to justify treatment that would otherwise be discriminatory under s 20(3) and (4); two of the exceptions
are particularly relevant for this analysis.
What is the impact of the act’s exceptions?
A service provider does not discriminate if the
treatment is necessary in order to not endanger the
health or safety of any person (including the
disabled person) under s 20 (4)(a). This exception
is problematic because it allows less favourable
treatment for the benefit of a third party and its
impact is apparent through examination of the case
of Y, a 25-year-old woman with a learning disability.9 Y was incapable of consenting to, or refusing, a
test and a bone marrow transplant for the benefit of
her sister. Clearly, Y received no physical benefit as
donor and there was no reported evidence of a close
sisterly relationship. The court reasoned, however,
that if the ill sister were to die, their mother would be
hindered from visiting Y’s residential facility due to
her bereavement. The court considered the procedures low risk and concluded that it would be in Y’s
best interests if her sister survived.
One might expect that disability legislation
would be relevant to such determinations and yet
the court did not cite the act. Would the act have
prevented the procedure? Perhaps not. Disability
was central to this case; the issue would not have
reached the court if Y had had the legal capacity to
consent to, or refuse, the procedures. Yet the s
20(4) (a) exception allows treatment that is “necessary in order to not endanger the health or safety of
any person” [emphasis added]. The act is flawed
because it allows interventions for the welfare of
any other person to take precedence over the disabled person’s interests.
389
The second exception under s 20 (4)(b) also
limits the act’s potency. Treatment that is otherwise
discriminatory may be justified if the service
provider reasonably believes that the disabled
person is incapable “of giving an informed consent
and for that reason the treatment is reasonable in
that case” (emphasis added). This exception is
fatuous because it fails to address the complexity of
consent issues relating to treatment of people who
lack capacity. This approach conflates the issue of
consent and discrimination. One’s ability to consent should not be the cornerstone for determining
whether a procedure is discriminatory. The s
20(4)(b) exception can be criticised because it does
not assess whether the proposed procedures are
unjustifiably invasive and irreversible, have a
discriminatory impact, or fail to uphold equal protection principles. Furthermore, the exception distinguishes between people who are capable and
incapable of giving consent; the latter are more
disabled and arguably should have the greatest protections, precisely on the basis of that vulnerability.10
The dangers of this exception are apparent when
applied to sterilisation of a woman with a learning
disability who lacks the capacity to consent. If she
asserts that she is being treated less favourably than
non-disabled women in the health service, the service provider may argue that the woman is incapable
of providing consent. On this basis, the procedure
could be deemed to be reasonable. Again, one
would expect that the act would be cited in cases
involving highly controversial medical procedures
that are administered to people with disabilities. To
date, however, the act has not been invoked in this
manner and the common law principle of best
interests governs sterilisation.11
What promise does the act hold in the realm of
non-treatment decisions? Perhaps a decision to
withhold or withdraw treatment could be challenged on the basis that the health service is unjustifiably refusing service under s 19(2)(a). Although
this approach has not been tested, it suggests that
the reasoning and impact of recent non-treatment
decisions deserve scrutiny.
Is disability relevant to non-treatment
decisions?
The act is intended to eradicate unlawful discrimination against people with disabilities and yet its
influence is conspicuously absent in medical
jurisprudence. A survey of significant nontreatment decisions demonstrates that disability is
fundamental to such decisions but cases that have
been decided postenactment have not cited the act.
Apparently the stream of non-treatment decisions
have flowed unabated by the act or the human
rights legislation. Although the act was drafted as
the specific vehicle to protect people with disabilities, even in matters less compelling than end-of-life
medical decisions, its protections have not been
zealously applied.
The following two cases indicate the emergence
of the best interest principle for end-of-life
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Equality and disability symposium: Disability matters in medical law
decisions involving infants with multiple disabilities. J was a five-month-old who had brain damage,
profound mental and physical disabilities and was
expected to be blind, deaf, and quadriplegic.12
Although J was unlikely to develop “even the most
basic functions”, he was not on the point of death
or in the process of dying. J had required artificial
ventilation and doctors asserted that it would be
inappropriate to administer it in the event of future
collapse. The court weighed the chance of preserving J’s life, his quality of life, and the poor prognosis. The best interest principle was central to the
court’s decision that withholding artificial ventilation would not be unlawful.
This approach was employed in a second case
involving an infant named J.13 The Court of Appeal
considered the withdrawal of artificial ventilation
for a 16-month-old with microcephalia, cerebral
palsy, epilepsy, and blindness. J required nasogastric feeding and was unlikely to achieve a higher
level of functioning. J’s life expectancy was
uncertain but short. The court was unwilling to
require a doctor to treat a patient if, in the clinical
judgment of the doctor, such treatment was not in
the patient’s best interests. To order a doctor to
treat against his or her clinical judgment would be
an abuse of judicial power. This decision was made
over the objection of J’s mother.
These cases demonstrate the courts’ willingness,
for over a decade, to make decisions that shorten
the lives of infants with disabilities, based on
obscure and conflicting notions of best interests.
Surely the mother of J in 1992 believed that she was
acting in her child’s interest when she opposed the
withdrawal decision. The best interests principle
gained prominence in PVS cases, beginning with
Anthony Bland.
Was Tony Bland disabled?
A provocative approach to non-treatment decisions
is to view the patients through the lens of disability.
The following cases involve PVS patients who
would now qualify as disabled under section 1 of
the act on the basis that they have profound mental
and physical impairments which have permanently
adverse eVects on the patients’ ability to carry out
any normal activities. The permanent vegetative
state was defined in April 1999 by the Royal
College of Physicians as a state when “the diagnosis of irreversibility can be established with a high
degree of legal certainty. It is a diagnosis which is
not absolute but based on probabilities.
Nevertheless, it may be reasonably made when a
patient has been in a continuing vegetative state
following head injury for more than twelve months
or following other causes of brain damage for more
than six months”.14
Anthony Bland was in a persistent vegetative
state following the tragedy at the Hillsborough stadium in 1989.15 His brain functions involving communication, consciousness, and voluntary movement were severely impaired. Three years after the
incident, the NHS trust applied for a declaration
that withdrawal of artificial hydration and nutrition
would not be unlawful. Ultimately, the House of
Lords accepted that hydration and nutrition, which
it defined as a form of treatment, could be
withdrawn on the basis of the patient’s best
interests. The House of Lords reported that the
decision was to be restricted to patients in a
persistent vegetative state and not to be a precedent
for decisions to withhold or withdraw treatment for
patients who had a very low or poor quality of life.
A logical concern is whether the Bland case may
lead to the legality of such outcomes for severely
disabled people. “The courts have tried to insist
that they do not wish to extend sanctioning ‘negative treatment’ in PVS patients to doing so in other
conditions and that they do not engage in
assessment of the quality of patients’ lives. Yet it
would seem that slippage from this moral principle
has already begun.”16
Recently the Family Division reported that the
criteria for the diagnosis of PVS produced by the
Royal College of Physicians were not fulfilled in two
cases.17 18 Also, by the end of 1998, eighteen PVS
cases had been heard and approved by English
courts.19 The basis of the decisions was the best
interests principle. Surely the act was designed to
establish and protect the interests of people with
disabilities yet it has not featured in these decisions.
Professor Finnis explained that people in a
persistent vegetative state are “gravely damaged yet
their inability to participate in any other basic
human good does not nullify their participation in
the good, the benefit, of human life—not even when
participation is wounded and as deficient as hopelessly as Bland”.20 He argued that acknowledging
the humanity of people in a persistent vegetative
state does not require that all patients be given all
treatment. Rather, he asserted that as citizens of an
aZuent society, we must strenuously weigh the
provision of basic care to people whose death is not
imminent when this involves no significant burden;
the cessation of care denied “the personhood of
these invalids by breaking oV human solidarity with
them at its roots”.21
These concerns are equally relevant for people
with other debilitating conditions who are at risk of
withdrawal of life-sustaining measures. The Bland
holding was relevant to later decisions whether to
initiate therapeutic measures for people with physical and mental disabilities. R was born with a brain
malformation and cerebral palsy and was described
as being in a low awareness state.22 At 23 years of
age, R was deteriorating physically and neurologically. A doctor signed a “do not resuscitate order”
which the staV of R’s day centre challenged through
judicial review, asserting it was an irrational and
unlawful decision based on the assessment of R’s
quality of life. The NHS obtained authorisation to
withhold cardiopulmonary resuscitation and antibiotics, based on the best interests principle. This
case demonstrates the extension of the principle to
medical conditions beyond the intent reported by
the House of Lords. Future research may demonstrate procedural decay whereby non-treatment
decisions are justified for an increasing number of
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Diesfeld
conditions, or for less severe, non-chronic, or nonterminal conditions.
Is human rights legislation the answer?
Recent cases have tested the human rights legislation in end of life decisions involving people with
disabilities. D was 19 months old and had multiple
disabilities, a lung disease, and short life expectancy.23 After his release from hospital, the NHS
trust applicants maintained that D’s poor state of
health and poor prognosis meant it was not in his
best interests to undergo artificial and manual ventilation in the future. D’s parents argued the application was premature. The court held that the parents’ views could not be held to override the court’s
view of best interests, which was based upon the
clinician’s assessment. The court examined the
cases with regard to the implementation of the
European Convention for the Protection of Human
Rights and Fundamental Freedoms into domestic
law by virtue of the Human Rights Act 1998. It held
that there was no breach of articles 2, (right to life)
and 3, (the right to not be subjected to inhuman or
degrading treatment, including the right to die with
dignity). (See schedule 1 to the Human Rights Act
1998.)
A similar human rights analysis in 2000 influenced the fates of Mrs M and Mrs H, two women
in persistent vegetative states.24 The respective
trusts succeeded in obtaining authorisation for
withdrawal of nutrition and hydration in the first
case to test the right to life protections under article
2 (1) of the Human Rights Act 1998. Dame ButlerSloss reported:
“Although the intention of withdrawing artificial
nutrition and hydration in PVS cases is to hasten
death, in my judgment the phrase ‘deprivation of
life’ must import a deliberate act, as opposed to an
omission, by someone acting on behalf of the state,
which results in death . . . The death of a patient is
the result of the illness or injury from which he suffered and cannot be described as a deprivation.”25
The High Court held that the analysis of these
issues by the House of Lords in Bland was entirely
in accordance with the convention case law in article 2 and that it “imposes a positive obligation to
give life-sustaining treatment in circumstances
where, according to responsible medical opinion,
such treatment is in the best interests of the patient
but does not impose an absolute obligation to treat
if such treatment would be futile”.
The definition and implications of futility are
themselves notoriously controversial.26 27 Laurie
and Mason assert that the doctor’s role has been
transformed in relationship to determinations of
medical futility. Historically, the doctor made
assessments of futility in the face of death, but now
must make such assessments of futility in the “face
of an unacceptable quality of life”.28 This marks a
significant shift and may in part explain, but not
justify, the disturbing events surrounding David
Glass’s medical treatment.
391
Disability revisited
David was 12 years old and had multiple disabilities, including cerebral palsy and epilepsy. His
mother wished him to live out his natural life span.29
In October 1998, David was in hospital suVering
from infections following a tonsillectomy. Clinical
staV believed that David was dying and wished to
administer diamorphine to alleviate his distress.
Over his mother’s objection, the diamorphine infusion was administered. Violent incidents between
David’s family and two doctors led to initiation of
civil and criminal proceedings against members of
David’s family. This medical decision led to
violence and demonstrates the controversy that
accompanied conflicting perceptions of a disabled
boy’s best interests.
It is unlikely that the medical staV would have
contemplated injecting diamorphine into a child
without disabilities, and over the parent’s objection.
If David had no physical or mental impairment, or
it was insubstantial, short term, or didn’t hinder his
daily activities, he would not have been placed in
this precarious position. In short, if David were a
non-disabled boy recovering from a tonsillectomy,
the medical staV would not have contemplated
these measures.
David’s medical condition cannot be disentangled from his disability; the act was designed to
guard the interests of people with disabilities and
the medical procedures involved would qualify as
health services. Perhaps David could have asserted
that he was discriminated against by the medical
staV because there was a failure to provide health
service under (s 19(1)(a), or that he was treated less
favourably in the standard or manner (s 19(1)(c), or
terms (s 19(1)(d) on which the health service was
provided. Whether the act in fact would provide
protection from the administration of diamorphine
is questionable, particularly given the absence of
the act’s employment in other medical law cases.
Conclusion
One of the distinct dangers of continued reliance
on the Bland best interest principle is the unfettered
power it has aVorded doctors, who are the
gatekeepers to all manner of treatment, including
life-sustaining treatment. Professor Finnis exhorts
us to consider the “true implications of principles
and notions being put into practice by a group of
citizens whose medical qualifications, experience,
and ethos confer no standing to settle for the whole
community such issues of meaning, consistency,
humanity, and justice”.30 The antidiscrimination
and human rights legislation oVered two potential
checks on the medical control over vulnernable
individuals.
One might conclude that reliance on the Disability Discrimination Act 1995 or the Human Rights
Act 1998 in non-treatment decisions is an inadequate, and ultimately futile, endeavour. Arguably,
the shared characteristics of the above patients are
also shared by a broad population of legally vulnerable and non-disabled fetuses, neonates, minors,
and adults thereby justifying an alternative legal
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Equality and disability symposium: Disability matters in medical law
approach. For example, the best interest approach
has been avoided through enactment of the Adults
with Incapacity (Scotland) Act 2000 which allows
the appointment of proxy decision makers who are
authorised to make medical treatment decisions.31
This approach may be a more meaningful strategy
than employing legislation that was not explicitly
designed for medical decision making. However,
any legislation that governs medical decisions for
vulnerable patients should incorporate the laudable
intent of the antidiscrimination and human rights
legislation and include principles of equality,
autonomy, justice, and least restrictive alternatives.32
What does this state of aVairs mean? We are at a
juncture where benevolent paternalistic medical
decision making intersects with rights-based legislation. Consistently, best interests have been cited
as justification for a spectrum of controversial
medical decisions. One might legitimately question
whether courts have thoroughly assessed alternatives for people who have had their fertility
compromised, bodily integrity invaded, liberty
restricted, and deaths hastened based on the best
interests principle. These controversial procedures
are administered to people who qualify as disabled
under the act and yet it has not been cited. How are
we to negotiate this interface?
Acknowledgments
I am grateful to Professor David Seedhouse of the
National Centre for Health and Social Ethics, Nigel
Bryant and Liz Smythe of Auckland University of
Technology, and the anonymous assessors for their
helpful comments. The views expressed are the
author’s own.
Kate Diesfeld, BA, Juris Doctorate, is Senior Lecturer
and Assistant Director, National Centre for Health and
Social Ethics, Faculty of Health Studies, Auckland
University of Technology, Auckland, New Zealand.
References and notes
1 Disability Discrimination Act 1995, schedule 1, para. 4. London:
HMSO, 1995.
2 Gooding C. Blackstone’s guide to the Disability Discrimination Act
1995. London: Blackstones Press Limited, 1996: 34.
3 Wolfensberger W. The growing threat to the lives of
handicapped people in the context of modernistic values.
Disability and Society 1994;9:395-413 at 402.
4 Keywood K. Best practice? Health care decision-making by, with
and for adults with learning disabilities. Liverpool: University of
Liverpool and the Institute of Medicine, Law & Bioethics,
1999.
5 The Declaration on the Rights of Disabled Persons was
proclaimed by the General Assembly of the United Nations on
9 December 1975.
6 Cherry C. Health care, human worth and the limits of the particular. Journal of Medical Ethics 1997;23:310-14.
7 For analysis of the Disability Discrimination Act 1995 to psychiatric hospitalisation of people with learning disabilities, see
Diesfeld K. Neither consenting nor protesting: an ethical
analysis of a man with autism. Journal of Medical Ethics
2000;26;277-81.
8 See reference 2: 35.
9 Re Y [1996] 2 FLR 791, (1996) 35 BMLR 111, (1996) 4 Med
LR 204.
10 See reference 7: 280.
11 Re F (Mental Patient: Sterilisation) [1990] 2 AC 1.
12 Re J [1990] 3 All ER 930, CA.
13 Re J [1992] 4 All ER 614.
14 Royal College of Physicians. The permanent vegetative state.
Journal of the Royal College of Physicians 1996;30:119-21.
15 Airedale NHS Trust v Bland [1993] AC 789 1 All ER 821.
16 Laurie GT, Mason JK. Negative treatment of vulnerable
patients: euthanasia by any other name? Juridical Review 2000;
13:159-78 at 167.
17 Re H (1997) 38 BMLR 11.
18 Re D (1997) 38 BMLR 1.
19 See reference 16: 167 citing British Medical Association. Withholding and withdrawing life-prolonging medical treatment: guidance for decision making. London: BMJ Books, 1999: 54.
20 Finnis JM. Bland: Crossing the Rubicon? The Law Quarterly
Review, 1993;109:329-37 at 334.
21 See reference 20: 335.
22 Re R [1996] 2 FLR 99, HC.
23 A National Health Services Trust v D The Times 2000 Jul 19.
24 NHS Trust A v Mrs M and NHS Trust B v Mrs H [2000]
EWHC 29.
25 NHS Trust A v Mrs M and NHS Trust B v Mrs H [2001] All
ER 801, 807.
26 Rubin S. When doctors say no: the battleground of medical futility.
Bloomington: Indiana University Press, 1998: 25.
27 Mason JK, McCall Smith RA. Law and medical ethics [5th ed].
London: Butterworths, 1999: 26.
28 See reference 16: 166.
29 Glass R v Portsmouth Hospitals NHS Trust ex parte Carol
[1999] EWCA 1707.
30 See reference 20: 334.
31 See reference 16: 172.
32 Bingley W. Achieving human rights for people who lack capacity. Journal of Mental Health Law 2000;Feb:83-90.
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