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Legal Studies, Vol. 27 No. 1, March 2007, pp. 51–73DOI: 10.1111/j.1748-121X.2006.00037.x Where are the carers in healthcare law and ethics?* Jonathan HerringFellow in Law, Exeter College, Oxford The work of carers is too often unvalued and unrecognised. This paper seeks to demon-strate some of the ways in which law and traditional medical ethics overlook the interestsof carers and the importance of their work. It argues that this is, in part, due to theindividualistic ethic that has come to dominate legal and ethical discourse about medicine.
It recommends an approach based on an ethic of care that seeks to promote and protectjust relationships of care, rather than an individualised model of rights. No one would dare set the following question in an examination paper for medicallaw and ethics: ‘Michael is 65 and needs a hip replacement. Without it he will have very limited movement. His doctor explains the options and recommends a hip replacement.
Michael decides not to go through with the operation. Is the doctor entitled legallyor ethically to force the operation upon Michael?’ The answer is far too easy. The law is clear: it is unlawful to impose medical treatmenton a competent person without their consent. The ethics are clear too: the principleof autonomy gives the patient an absolute right to refuse treatment.1 My argument will be that the case should not necessarily be regarded as that straightforward. Important issues are hidden. Where are the interests of his partnerand his family? Where are the carers? They have become ‘ignored and invisible’.2This paper will seek to demonstrate how easy it is and how common it is for legaland ethical issues in healthcare to consider just the isolated patient and the medicalprofessionals. It is extraordinary that despite the central role that unpaid carers playin the healthcare of the nation, they are rarely, if ever, mentioned in textbooks orarticles on medical law or ethics.3 The first part of this paper will show that the interests of carers are often overlooked and, as a result, carers receive a poor deal. This is hardly controversial. Just a few A version of this paper was given at a seminar arranged by the Royal Institute of Philosophy at the Centre for Professional Ethics, University of Keele. I am grateful to the
participants for their comments and those of two anonymous referees and Sally Sheldon.
1.
E Jackson Medical Law (Oxford: Oxford University Press, 2006) ch 4. For work on carers from sociological perspectives, see J Read Disability, the Family and Society: Listening to
Mothers (Buckingham: Open University Press, 2000); J Read and L Clements Disabled Chil-
dren and the Law: Research and Good Practice (London: Jessica Kingsley, 2001); and K
Stalker (ed) Reconceptualising Work with ‘Carers’ (London, Jessica Kingsley, 2002).
2.
M Henwood Ignored and Invisible (London: Carers’ National Association, 1998).
Not even, unfortunately, in J Herring Medical Law and Ethics (Oxford: Oxford University 2006 The Author. Journal Compilation 2006 The Society of Legal Scholars. Published by Blackwell Publishing,9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA months ago the Commission for Social Care Inspection stated that ‘Carers needsupport. Councils need to rethink their approach to the development of services tosupport carers. Currently little support is available, and what is available is extremelylimited, both in quantity and quality’.4 The second part of the paper will consider why it is that carers appear to be so easily ignored. Is it not blatantly obvious that carers’ interests are important? Indeed,the government had announced a National Strategy of Carers, with the Prime Ministerdeclaring: ‘What carers do should be properly recognised, and properly supported – and the Government should play its part. Carers should be able to take pride in whatthey do. And in turn, we should take pride in carers. I am determined to see thatthey do – and that we all do.’5 This paper will argue that the fact that the interests of carers are so easily lost is notsimply the story of another disadvantaged group within a society whose politicalmuscle is not sufficiently strong to bend the government’s ear. It may be that in part,but it is also due to the way that medical law and ethics tends to view patients andmedical professionals as isolated individuals.
Before moving on we need to consider the meaning of the word ‘carer’. The government has suggested the following: ‘By carers we mean people who look aftera relative or friend who needs support because of age, physical or learning disabilityor illness, including mental illness’.6 This definition would include parents, althoughthat was probably not the government’s intention.7 Generally, the term carer is takento exclude parents caring for able-bodied children and paid carers.8 Whether the termcarer should include parents or paid carers raises a number of interesting issues. Forthe purposes of this paper carer will be to taken to exclude those groups.
Let us start with some facts about carers. The 2001 census indicated that there areabout 6 million carers in the UK.9 The General Household Survey estimates there areover 7 million.10 Carers UK state that three in every five people will become a carerat some point in their lives.11 The 2001 census revealed that 58% of carers are women.
Commission for Social Care Inspection The State of Social Care in England 2004–5 (London: Commission for Social Care Inspection, 2005).
5.
Department of Health Caring About Carers (London: Department of Health, 2005) p 1.
Ibid, p 1. C Ungerson ‘Cash in care’ in M Harrington Meyer Care Work: Gender Class and the Welfare State (London: Routledge, 2000) p 68 states that the government has paid only
‘lip service’ to promoting the interests of carers.
7.
Immediately following this definition, the government gives the number of carers at 5.2 million; they cannot, therefore, have intended their definition to extend to parents.
8.
See, for example, the definition of carers in Carers UK Facts About Carers (London: Carers UK, 2005) p 1. Indeed most legislation dealing with carers excludes paid carers: L
Clements Carers and the Law (London: Carers UK, 2005) para 2.3.
9.
J Maher and H Green Carers 2000 (London: Office for National Statistics, The Stationery Office, 2001).
11.
Carers UK Without Us . . .? Calculating the Value of Carers’ Support (London: Carers 2006 The Author. Journal Compilation 2006 The Society of Legal Scholars Indeed, one in four women aged 50–59 are involved in caring.12 There are 174,995young people under the age of 18 involved in caring.13 Despite the joys that caring can bring, it also brings with it significant • Carers often suffer poverty. Carers UK claim that 77% of carers are financially worse off since becoming a carer, and many end up in poverty during retirement as a result ofnot being able to work.15 It has been claimed that seven out of ten older carers are unableto afford adequate heating or clothing.16 Although there is some benefit provision, itoften goes unclaimed, with carers not claiming nearly £750 million per year.17 • The health of carers suffers. A survey by Carers UK found that those caring for 50 hours a week or more were twice as likely to be ‘not in good health’ as those not caring.18Four out of ten carers suffer physical effects from caring such as back pain or otherinjury.19 Almost nine out of ten carers in a survey reported that they felt stress, anxiety,depression or loss of sleep, due to being a carer.20 Carers who provide substantialamounts of care are said to be twice as likely to have mental health problems than thosewho are not providing such care.21 • In a wider sense, carers experience social isolation and exclusion, from a failure to recognise their role in society. A recent survey of carers for an ITV News investigationfound 21% of carers saying life was a constant struggle.22 • There are particular issues surrounding children and young people who undertake caring responsibilities.23 It is not surprising that young carers are disadvantaged in educationaland social terms. A recent report found that 27% of young carers of secondary schoolaged had missed school or experienced educational difficulties.24 All of this, yet carers provide an essential role to society.25 It has been claimed that the value of the care provided is a staggering £57.4 billion per year, the equivalent P Bywaters and A Harris ‘Supporting carers: is practice still sexist?’ (1998) 6 Health and Social Care in the Community 458.
13.
M Hirst ‘Carer distress: a prospective, population-based study’ (2005) 61 Social Science & Medicine 697.
15.
Carers UK Carers UK Welcomes White Paper (London: Carers UK, 2006).
‘Carers missing £750m benefits’ BBC Newsonline 2 December 2005.
M Hirst Hearts and Minds: The Health Effects of Caring (London: Carers UK, 2004).
B Keeley and M Clarke Carers Speak Out Project (London: Princess Royal Trust for Carers, 2002). See also G Deimling et al ‘Care-related stress. A comparison of spouse and
adult-child caregivers in shared and separate households’ (1989) 1 Journal of Aging and Health
67.
21.
A Marriott et al ‘Effectiveness of cognitive-behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer’s disease’ (2000) 176 British Journal
of Psychiatry 557.
22.
ITV News Special Who Cares? broadcast 5 February 2006.
A Walker Young Carers and their Families (London: HMSO, 1996); C Dearden and S Becker Young Carers in the UK (London: Carers UK, 2004).
24.
The Princess Royal Trust for Carers Eight Hours a Day and Taken for Granted (London: PRTC, 1998); P Smith ‘Elder care, gender, and work: the work–family issue of the 21st century’(2004) 25 Berkeley Journal of Employment and Labour Law 351.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars to the spending on the National Health Service (NHS).26 Of course the value of carelies not just in its economic worth. It has almost become a cliché to say that a societyshould be judged by how it treats its most vulnerable members, but, if this is so, thencarers play a central role in one of society’s most important tasks.
Examples will now be given of areas in healthcare law and ethics in which theinterests of carers have been overlooked.
Quality Adjusted Life Years
Quality Adjusted Life Years (QALY) is probably the most popular way of analysingthe cost-effectiveness of treatments and is widely used in decision making in rationinghealthcare. It is used by the National Institute for Health and Clinical Excellence(NICE).27 QALY, as used in rationing decisions, requires an assessment of three factors: • How many extra years of life will the treatment provide this patient?• What will the quality of those extra years be?• How expensive is the treatment? A treatment that provides a year of perfect health scores as one; however, a year ofless than perfect health will score less than one. Death is equivalent to 0. Under QALY,therefore, a treatment that provides a patient with an extra year of perfect health wouldbe preferred to a treatment that provides a patient with an extra year, but a year ofpain and low quality of life. A treatment which offered a large number of QALYs fora small amount of money would be highly cost-effective, while one that produced alow number of QALYs for a large amount of money would not be. Someone requiredto ration health services can therefore examine a range of different services andconsider how many QALYs for how much money is possible.
Despite its popularity, QALY is individualistic in focusing just on the impact of the treatment on the individual patient. When considering a patient, the improvementin the patient’s quality of life alone is considered and the impact on their carers countsfor nothing. It may be that, for example, a drug that prevents incontinence might nothugely improve the quality of life for the patient, but have a dramatic impact on thequality of life for their carer. Yet the impact on the carer would count for nothing ina traditional analysis of QALY.
A particular example of the ‘misuse’ of QALY is NICE’s response to drugs for the treatment of dementia.28 In 2005, NICE proposed that certain drugs should notbe authorised for NHS patients because their cost was too high and ‘outside the rangeof cost effectiveness that might be considered appropriate for the NHS’.29 Professor J Fox-Rushby Disability Adjusted Life Years (DALYs) for Decision-Making? (London: Office of Health Economics, 2002).
28.
J Harris ‘It’s not NICE to discriminate’ (2005) 31 Journal of Medical Ethics 373.
National Institute for Health and Clinical Excellence Appraisal Consultation Document: Donepezil, Rivastigmine, Galantamine and Memantine for the Treatment of Alzheimer’s Dis-ease (London: NICE, 2005) para 4.3.5.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars John Harris, never one to mince his words, comments that ‘It is difficult to think ofthis as anything but wickedness or folly or more likely both’.30 NICE’s decision wasbased on a QALY assessment: the improvement in quality of life for Alzheimer’spatients per year was insufficient to justify the expenditure. There are a number ofways NICE’s decision could be challenged. Here the focus will be in the absence ofany consideration of the burden on those caring for people suffering dementia. Thedistress of seeing an individual you have loved and is central to your sense of selflose their personality, memory and become, in a sense, a different person is hard tobear. This is particularly so where the disease manifests itself in aggression. Medica-tion that may inhibit the progress of this condition is of huge benefit, not just to theindividual patient, but for those caring for him or her.
In January 2006 NICE, acknowledging the controversy that had arisen, revised its decision and issued further guidance. However, NICE rejected the use of Ebixa forlate stages of Alzheimer’s disease and recommended that anti-cholinesterasetreatments31 not be available for people with a mild version of the disease. NICEfound the clinical benefits of Ebixa for advance Alzheimer’s not demonstrated. How-ever, it did support the use of anti-cholinesterase treatment if the condition was notmild. This time, in reaching its conclusions, the Committee did consider the benefitof the treatment to carers. It held: ‘The Committee considered that although at any point in time a carer may have a higher utility if they were caring for a person responding to drug treatment thanif the person were not on the drug or not responding to the drug, the effect of thedrug would be to delay progression of the condition, in which case the carer wouldstill be faced at some time in the future with the same difficulties caused by diseaseprogression. Exceptions could be if the person did not progress to later and moredifficult stages of the disease within 5 years or because of death.’32 The argument is, in effect, that if the carer is going to have the disadvantage of caringfor the person suffering from Alzheimer’s at some point in time it is of no differenceto the carer whether they suffer it now or at some future date. This is, however, toplace insufficient weight on the obvious benefit to the carer of delaying the onset ofthe progression of the illness: the fact that the carer will have more time with theirloved one, before the condition takes its toll. The loss of that time, to the carer, is adeep loss – in particular, because the carer in the early months would have the anguishof knowing that the person they are caring for would not be as ill as they are if thedrug had been provided.
The NICE report went on to say that the QALY assessment should be conducted from the perspective of the NHS: ‘The Committee therefore concluded that it wouldnot be appropriate to include carer costs in the augmented base case or sensitivityanalyses on the augmented base case’.33 So costs to the NHS count, costs to carersdo not. Yet the costs to the individual carer are costs to real people whose lives bearthe blight of caring. By contrast, any cost to the NHS and society is spread acrosseveryone. To count for nothing the sacrifices of carers and to consider only themonetary loss to the NHS in allocating healthcare resources is unjustifiable. Politi-cally, of course, the approach is understandable. Costs to the NHS are in the public Donepezil, rivastigmine and gelantamine.
NICE Donepezil, Galantamine, Rivastigmine (Review) and Memantine for the Treatment of Alzheimer’s Disease (Appraisal Consultation) (London: NICE, 2006) para 4.3.10.2.
33.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars eye and impact on the sensitive issue of levels of taxation. Costs to carers go unnoticedin the public area, although real enough to those who suffer them, and real enoughin their effect on society as a whole.
There is, it must be admitted, a danger in considering the impact of treatments on carers in considering rationing decisions. For example, a person who is cared for bya number of family members will be able to claim a ‘larger’ loss if s/he is not providedwith treatment than a person who lives alone with no one caring for them. Should aperson’s access to treatment depend on how many people love them? But this concernis, in fact, more to do with a system based on QALYs rather than being about therole of carers. The QALYs approach leads to different treatment based on what mightappear to be based on criteria that might be thought to cause unfairness: a person’spain threshold; their life expectancy; their present state of health. Indeed, a popularcomplaint about QALYs is that it can cause unfair discrimination in treatment basedon age. It faces complaints that often face consequentialist approaches to complexissues. My point is that if we are using a consequentialist approach based on QALYs,despite the apparent unfairness that can result, we should include carers in theassessment of the extent to which a treatment improves the quality of lives.
Carers under the law of tort
If A is injured by X’s negligence and, as a result, A’s partner has to give up work tocare for him, it might be expected that the law would say that X has, as a result ofher negligence, caused A’s partner a loss and is liable to pay him damages. But no.
X is liable to pay damages for A’s partner’s loss, but these are payable to A,34 althoughA will then hold them on trust for him.
The use of the trust might be thought just a technical issue. After all, at the end of the day, the carer receives the damages and should it matter exactly how the lawformulates this? It is suggested that it should matter for two reasons. First, the careris at the mercy of the claimant suing for damages.35 If the claimant does not wish tosue, for example she cannot face the effort of litigation, the carer has no remedy.36Secondly, there is the symbolic effect that the carer’s identity is subsumed within theidentity of the claimant. The loss to the carer is not explicitly acknowledged: the lossis seen as the loss to the claimant who will have to pay for care.
Even where damages are paid, the carer will not necessarily get the actual loss of earnings she has suffered.37 The Law Commission reports that the general approachis to award the amount it would cost to pay for the care on the open market, less one-third. The one-third reduction is to reflect the fact that national insurance and taxcosts are not incurred.38 Colin McEachran QC referring to these cases states thatgratuitous care is ‘grossly undervalued by the courts’.39 It does not necessarily reflect Hunt v Severs [1994] 2 All ER 385. A useful summary and discussion of the law is found in the Law Commission Damages for Personal Injury: Medical, Nursing and Other Expenses;
Collateral Benefits (Report No 262, 1999).
35.
S Degeling Restitutionary Rights to Share in Damages (Cambridge: Cambridge Univer- sity Press, 2003).
37.
B Braithwaite ‘The significance of family care for injured people’ [2005] Personal Injury Compensation 10.
38.
Law Commission, above n 34, para 3.83.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars the actual loss of income suffered by the carer. It might be said that where the would-be carer is currently earning more than a paid carer would be, the claimant shouldmitigate the loss and rely on paid care, rather than their high-earning relative or friendproviding the care. However, surely it is reasonable to prefer care to be provided bya person close to you.
Supporters of the current tort law approach to carers might argue that it is appro- priate because the carer has no ‘right to provide care’ and so should not be able toseek damages in respect of it.40 A carer should not be able to receive damages forcare which the injured person may decide they would rather receive from someoneelse. This argument may have carried weight in the past. But, in these days ofstructured settlements where damages can be paid in variable instalments over time,41the argument is weaker. The instalments can be paid to the person who has beenproviding care (or is likely to provide care) for the relevant period of time andpayments can cease if they stop providing the care.
Removal of incapable people from their carers
When a local authority wishes to take a child into care, a protective order can onlybe made if the ‘threshold criteria’ in s 31 of the Children Act 1989 are met, whichinclude a requirement that the child is suffering or likely to suffer significant harmand that is attributable to the care of their parents.42 Where a local authority seeks toremove an individual from their home under its powers under the National AssistanceAct 1948, s 4743 there are similar provisions. It is necessary to show that the personis suffering from grave chronic disease, or is infirm or ‘physically incapacitated’, andis living in unsanitary conditions. Further, it is necessary to show that the person isunable to care for herself and is not receiving proper care and attention from others,and that her removal is necessary in her own interests or to prevent injury or seriousnuisance to others. However, it is open to a local authority to rely on the inherentjurisdiction to remove an incompetent individual from their carer. In these cases, thereare no such hurdles to overcome.
In A Local Authority v Mr BS,44 Ms S, aged 33, suffered from a moderate/severe learning disability and atypical autism and epilepsy. She lacked capacity to decidewhere she should live and who should provide care for her. Since S’s mother’s death,Mr S, her father, had been her sole carer, assisted by some privately arranged supportworkers. In November 2002, there was an allegation that Mr S struck S and this ledthe local authority to institute proceedings to protect S. Under the inherentjurisdiction45 S was placed in a residential placement and contact between S and MrS was limited to supervised contact.
What is most notable is that, in deciding whether such orders should continue, Wall J distinguished cases such as BS with a child being removed into care. Remark-ably, Wall J did not even think there was a presumption that an incapable person wasbest cared for by the person who had been caring for them (in this case) for the past I am grateful to an anonymous reviewer for this point.
As amended by the National Assistance Act 1951.
[2003] EWHC 1909 (Admin), [2003] 2 FLR 1235.
Re F (Adult: Court’s Jurisdiction) [2000] 2 FLR 512.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars 33 years.46 Of particular concern are the following reasons which it might be thoughtcould be used against many carers of vulnerable people: ‘On the debit side is the fact that he is now rising 66. He had diabetes and arthritis. He will undoubtedly find it increasingly difficult to care for S as he growsolder, and he does not really have any practical contingency plan were he to fallill . . . Also into the equation inevitably falls a comparison with what the twoproposed homes offer to meet S’s needs. The proposed local authority accommo-dation offers what is, in effect, purpose built accommodation and staffing to meetS’s needs. Furthermore, it offers for her not only the prospect of more social livingamongst people of her own age, but facilities which will enable her father andsiblings to visit.’47 These comments are likely to be true for nearly all parents caring for their disabledadult children. These carers are likely to be older and with some health problems andthe contrast between the ‘social living’ and a private home will always be there. Thecontrast between the protection offered parents whose minor children cannot beremoved without the strongest justification and parents whose adult children can beremoved if it is assessed to be in their best interests is striking. This is not to say thatthere should be a direct analogy between the position of a parent and a carer.
However, what these decisions do indicate is a lack of proper respect for carers andtheir role. Luke Clements argues (writing about A Local Authority v Mr BS andSheffield CC v S48): ‘These two judgements accord, therefore, no formal worth to a family or caring relationship – in the sense that they are deemed to have any inherent value. Theview that emerges is that the courts will not credit such relationships with anyvalue – unless it is made out by evidence, and it is then to be recorded as a positiveor a negative on the ledge sheet.’49 Human Tissue Act 2004
The Human Tissue Act 2004 provides for ‘appropriate consent’ to be required inrelation to certain activities undertaken on to the body or material from a corpse. TheAct is complex, but broadly speaking the deceased person could have given consent,or someone who is appointed by that person can.50 If neither of these provisionsapplies then it is the person who is highest up the following list of ‘qualifyingrelationships’: 1. spouse or partner;2. parent or child;3. brother or sister;4. grandparent or grandchild;5. child of a person falling within paragraph (c);6. stepfather or stepmother; [2002] EWHC 2278 (Admin), [2003] 1 FLR 292.
L Clements ‘Carers – the sympathy and services stereotype’ (2004) 32 British Journal of Learning Difficulties 6 at 7.
50.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars 7. half-brother or half-sister;8. friend of longstanding.51 Notably absent from this list is any reference to an individual who has played a role in informal caring for the deceased. The carer’s relationship will have beenindispensable to the deceased. The carer, who will have washed and cared for thebody of the deceased for possibly years previously, will have no say in how it istreated after death. The bodies of the carer and cared for will have been inter-dependent during the care and this should be respected and reflected in giving thecarer a voice in what happens to the deceased’s body. True the carer may also be aspouse or partner or child and enter the list in that way, but this will not be by virtueof their caring role, but by virtue of the status of the relationship. Here again we seea failure to recognise or value the role of the carer.
Mental Capacity Act 2005
The Mental Capacity Act 2005 governs the treatment of people who lack mentalcapacity. An overriding principle of the Act is that when making decisions about aperson who lacks capacity these decisions should be made on the basis of what is inthe incompetent person’s best interests. Section 4 provides some requirements for aperson or court seeking to ascertain what is in a person’s best interests. Of particularnote, for the present purposes, is s 4(7): ‘He must take into account, if it is practical and appropriate to consult them, (b) anyone engaged in caring for the person or interested in his welfare . . .
as to what would be in the person’s best interests . . .’ At first sight this may appear a welcome statutory acceptance of the importance ofcarers’ views about what should happen to those they care for. However, it is impor-tant to note the restrictions on this. Most significantly, the carer may speak as to whatwould be in the incapacitated person’s welfare. Their views as to what would assistthem as carers is not a relevant consideration, unless it can be ‘dressed’ up as in thebenefit of the individual. So, if the carer can say ‘if my views on this issue are notlistened to I will cease to care for the individual and hence it is in their interests thatmy views are accorded weight’, then her views can be taken into account. But itwould not be permissible to take into account the carer’s views if she is saying thatsomething would make her caring role much easier, if that could not be said to benefitthe individual directly.
There are, of course, concerns that if weight is attached to a carer’s views this could too easily lead to a position where decisions are taken that are harmful to theindividual but are to the convenience of the carer. But, imagine a case where theprimary carer must undertake a long and arduous journey to undertake her caringresponsibilities each day. The possibility of moving the incompetent person muchcloser to the carer arises. Even though it might be possible to say (in a narrow sense)that the individual will not be benefited or harmed by the move, is it not justifiableto move the patient? 2006 The Author. Journal Compilation 2006 The Society of Legal Scholars The case of Re Y (Mental Patient: Bone Marrow Donation)52 is instructive in how, in fact, the best interests test can be manipulated into taking account the interests ofthe incompetent person’s family member. An application was made to remove bonemarrow from Y, an incompetent women, to give to her sister. Connell J authorisedthe operation stating that it could be said to be in Y’s best interest. This was becausethe bone marrow was needed to save the life of the sister. If the sister were to die thiswould impact on the health of Y’s mother and that would harm Y. The fact that Y’ssister’s life was in danger was therefore irrelevant except to the extent that her deathmight affect Y’s welfare. Some have criticised the result in the case in that it involvedusing Y for another’s benefit. However, I would suggest that the problem with thecase is not the result but the reasoning. Surely it was of crucial importance that thebone marrow might save the sister’s life. It would have been quite different if, say,the sister had required some skin for cosmetic surgery, even if such a ‘donation’ wouldhave improved Y’s relationship with her mother.53 It seems the key question shouldhave been whether in the family in which Y was part this donation was a reasonableaspect of the sacrifices made and benefits gained within the relationships. This is acontroversial issue and one to which I will return later.
Mental Health Act 1983
The ‘nearest relative’ of a person detained under the Mental Health Act 1983 has aspecial place in the legislation to ensure the rights of detained people are respected.
It is not appropriate to list here all the roles of the nearest relative under the legislativeregime, but they include, for example, that the nearest relative must be consultedbefore an application is made to admit a patient under s 3. The definition of ‘nearestrelative’ in s 26 is as follows: 1. husband or wife or civil partner;2. son or daughter;3. father or mother;4. brother or sister;5. grandparent;6. grandchild;7. uncle or aunt;8. nephew or niece.
And if none of these are available under s 26(7), a person who has been residing with the patient for at least 5 years prior to the admission to hospital may be consulted.
Carers, as carers, are not included at all. It is true that a person not included in thedefinition in s 26 could be appointed by the county court to act as the patient’s nearestrelative,54 or be authorised to act as the nearest relative.55 Notably, however, the legislation does take account of caring. Normally the nearest relative is the person highest up the list above. However under s 26(5) if the ‘patientordinarily resides with or is cared for by one or more his relatives’ then that relative I have discussed this case further in J Herring ‘The welfare principle and parent’s rights’ in A Bainham, S Day Sclater and M Richards What is a Parent? (Oxford: Hart, 1999).
54.
Mental Health (Hospital, Guardianship and Consent to Treatment) Regulations 1983, SI 2006 The Author. Journal Compilation 2006 The Society of Legal Scholars will be the nearest relative unless there are others higher up the list who haveundertaken a caring role or reside with the patient. It should be noted that this offersno status to a carer who is not also a relative. Further, it has no preference for a caringrelative over a relative who resides with the patient, but does not provide care.
Significantly, in the (now abandoned) Mental Health Bill 2004, specific obligationswere imposed to consult with carers about the patient’s wishes and feelings and toconsider the impact of decisions on carers themselves.56 The government has announced that it takes the claims of carers seriously. The firstsignificant milestone was the National Carers Strategy, published in 199957 Carersare assisted through the Carers (Recognition and Services) Act 1995, Carers andDisabled Children Act 2000 (the 2000 Act) and Carers (Equal Opportunities) Act2004 (the 2004 Act).58 These pieces of legislation are designed specifically to addressthe needs of carers. Most significantly, they give the carer who provides or intendsto provide a substantial amount of care on a regular basis a right to receive anassessment for services for themselves as carers. This is separate from the assessmentfor the person cared for and therefore can be carried out even if the person cared foris not assessed.59 The services to be provided can be anything that could ‘help thecarer care for the person cared for’. An assessment should include not just an assess-ment of the carer’s physical needs, but also of their mental health and their attitudetowards care. Department of Health guidance reminds local authorities that ‘somepeople, for example, could provide care but may feel subject to a moral obligation todo so, or may feel defeated, trapped or depressed’.60 The 2004 Act requires specific attention in such an assessment to be paid to a carer’s wish for employment, learning or training opportunities and leisure.61 The2000 Act extended rights of carers to include the right to support services, directpayments and vouchers. The 2004 Act also contains the practically important provi-sion that social service departments have a duty to inform carers of their right to anassessment.62 Luke Clements has written of the 2004 Act: ‘The new Act marks a major cultural shift in the way carers are viewed: a shift in seeing carers not so much as unpaid providers of care services for disabledpeople, but as people in their own right: people with the right to work, likeeveryone else; people who have too often been socially excluded and (like thedisabled people for whom they care) often denied the life chances that are availableto other people.’63 Department of Health Caring about Carers (London: Department of Health, 1999).
Carers have limited rights to take (unpaid) time off work to care for a dependant. This right is found in Employment Rights Act 1996, s 57A(1).
59.
Carers (Equal Opportunities) Act 2004, s 1.
Department of Health Carers and Disabled Children Act 2000 and Carers (Equal Oppor- tunities) Act 2004. Combined Policy Guidance (London: Department of Health, 2005) para 43.
61.
Carers (Equal Opportunities) Act 2004, s 2.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars Although there is much to welcome in this legislation, there are a number of issuesof concern surrounding it.
First, and most importantly, these provisions are largely permissive, authorising local authorities to provide these services if they wish, rather than dictating that theymust. It is true that the existence of the statutory power may be of use in exertingpressure on local authorities to provide services, but are not likely to be an effectivetool in pursuing legal remedies. That said, a blanket ban on providing services, orarbitrariness in the exercise of the power could be challenged in the courts.64 Certainly,the Department of Health Practice Guidance encourages a radical shift in localauthority practice in the provision of services to carers.65 Further, £185 million hasbeen given by the government for carers’ grants, although the money is not ‘ring-fenced’ in 2005/06 (unlike previous years) and therefore there is no guarantee that itwill be spent for that purpose.66 It is difficult fully to assess the impact of the 2004 Act until more research has been carried out. In one survey, following an assessment only 37% of carers ques-tioned saw an improvement in the services they were receiving.67 No doubt thecomments reported of one carer (Bernard) are far from atypical:68 ‘You get all thesestatements of intent to help, have these meetings, fill in dozens of multi-page forms,and then nothing happens. Except more talk, more forms, and endless waiting’.69 As well as the issue about the provision of services for carers being mandatory, it is important to note that services offered to the carer can be charged for, subject tomeans testing.70 This is in line with the controversial distinction between healthcareand social care for patients, the former being free, but the latter being liable to becharged for, subject to means testing. Carers UK opposed this move, arguing thatmany carers live in poverty and suffer financial hardship due to their caring role andto permit charging will only worsen their financial position.71 Their research hasshown that the extra charges were causing serious financial hardship.72 Carers UKhave also objected to inconsistency among the amounts charged by local authorities.73The fact that services for carers are means tested puts carers in a category similar tobenefit claimants who are in need and must be provided for by the state; rather thanrecognising that they provide an invaluable service to society whose work requiresrecognition and reward, regardless of income.
A more significant challenge to the carers’ legislation is an argument that carers and the cared for cannot be assessed separately. Inevitably, their interests are inter-mingled. An injury to the cared-for person will affect the carer; an injury to the carerwill affect the cared-for person. The emotional well being of the carer will affect that R (on the application of Stephenson) v Stockton-on-Tees Borough Council [2005] EWCA Civ 960, [2005] 3 FCR 248.
65.
Department of Health Carers and Disabled Children Act 2000. Practice Guidance (London: The Stationery Office, 2001).
66.
Carers UK Policy Briefing: Carers Grant Guidance Year 7 (London: Carers UK, 2006).
Carers UK Missed Opportunities: The Impact of New Rights For Carers (London: Carers UK, 2005).
68.
E Nicholas ‘An outcomes focus in carers assessment and reviews: value challenge’ (2003) 33 British Journal of Social Work 31.
69.
H Marriott The Selfish Pig’s Guide to Caring (Clifton-upon-Teme: Polperro, 2003) p 115.
Health and Social Services and Social Security Adjudications Act 1983, s 17.
Carers UK Caring on the Breadline (London: Carers UK, 2000).
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars of the cared-for person and vice versa. Therefore, to have independent assessmentsof the carer and the cared-for person is problematic.
Further, it is often difficult to know who is the carer and who is the cared for. This is most obvious in the very common case of elderly couples, where it may be thatboth their states of health are fluctuating and at different times each will be takingcare of the other. But in another way the line between the carer and cared for isblurred. It is often only the gratitude and willingness of the ‘cared for’ to receive thecare that enables the ‘carer’ to continue. The relationship is rarely all one way. Evenin cases where the cared-for person is incapable of expressing anything in responseto the care, care is still regarded as an aspect of the on-going relationship betweenthe two people.
A natural response to the issues surrounding carers, especially in the current climate,is to focus on claims for legal rights.74 In the context of carers, a number of humanrights claims could be made: 1. The right to protection from discrimination. An argument could be made that carers should not be discriminated against because of their carer status. Hence it hasbeen argued that just as disabled workers have rights requiring their employers tomake reasonable provision for their disability, a similar obligation should be imposedon employers in respect of carers. Luke Clements writes: ‘Carers should have the same life chances as anyone else. The mere fact they are providing care should not disentitle them to opportunities available to peoplewho do not have caring responsibilities. To argue otherwise would be to suggestthat it is legitimate to discriminate against carers in a way that would not beacceptable for any other group. If it is unacceptable to assert that disabled peopleshould not expect to work or participate in education or expect to have meaningfulpersonal relationships, then how could one possibly suggest that this is not alsothe case for carers?’75 Putting the argument in terms of the European Convention for the Protection ofHuman Rights and Fundamental Freedoms 1950 (ECHR) reference could be madeto Art 14, which states that the rights protected by the ECHR ‘shall be secured withoutdiscrimination on any ground such as sex, race, colour, language, religion, politicalor other opinion, national or social origin, association with a national minority,property, birth or other status’. Of course carers as a group do not fall directly intoone of the categories mentioned in Art 14. Nevertheless, as the European Court ofHuman Rights has pointed out, the words ‘such as’ indicates that this is not a closedlist.76 However, it may be argued that being a carer is unlike race or sex, for example,because it is a role one chooses to adopt and is not an ‘immutable’ characteristic.77 I am grateful to Rachel Taylor for some helpful advice on this section.
Da Silva Mouta v Portugal [2001] 1 FCR 653.
In R (on the application of Hooper) v Secretary of State for Work and Pensions [2005] UKHL 29, [2005] 1 WLR 1618, Lord Hoffmann (at para [65]) suggested that to fall withinArt 14 the characteristic had to be at least analogous to those mentioned in Art 14. See SFredman Discrimination Law (Oxford: Oxford University Press, 2002) p 79 for a powerfulargument against requiring immutability for a ground of discrimination.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars Further, it might be argued that carers as a category of people lack a group identity,of the kind required for recognition for protection. However, it is doubtful whether‘immutability’ or ‘group identity’ are required for a ground of discrimination. Ille-gitimacy and marital status do not fall into both of these headings and yet are acceptedas grounds of discrimination. As Sandra Fredman, rejecting the view that immutabil-ity is a requirement for a ground of discrimination, argues that ‘a person or group hasbeen discriminated against when a legislative distinction makes them feel that theyare less worthy of recognition or value as human beings, as members of society’.78As has been argued above, this description appears apt for informal carers in oursociety.79 Article 14 is not, of course, a free-standing Article. In other words, a carer would not be able to claim in the abstract that she was suffering discrimination. Rather, itwould be necessary for her to demonstrate that one of the rights protected by theECHR was interfered with in a way which was discriminatory, contrary to Art 14.
The most obvious claim would be that a carer’s right to respect for her private orfamily life was interfered with in a way which was discriminatory on the grounds ofher caring status. We shall discuss this right next.
2. The right to respect for private and family life. A carer can claim that their relationship with the cared-for person is protected by Art 8 of the ECHR. If the cared-for person and carer are relatives then there will be no difficulty in arguing that theirrelationship falls within the category of family. But if they are not blood relatives,there is an argument that they can still be regarded as having family life. The EuropeanCourt of Human Rights has accepted that foster carers and the children they lookafter can have family life.80 Even if a claim to family life fails, a strong case can bemade for their relationship to be protected by the right to respect private life underArt 8.81 This part of Art 8 has been said to include the right to ‘establish and developpersonal relationships’.82 Article 8 contains both positive and negative aspects. In negative terms, the state must not interfere in an individual’s private and family life unless to do so is necessaryunder the terms of Art 8(2) – for example it is necessary to protect the interests ofothers. This would provide some protection in the case of incapacitated adults beingremoved from their carers without clear proof of significant harm.
More significant is the positive obligation under Art 8.83 This requires that the state, on occasion, provide services or otherwise act in a way to enable a person to maintaina family relationship. This is, of course, limited. A state is only required to takereasonable steps. A strong case can be made for there being a right to assistance wherethe alternative is the separation of the carer and the cared-for person.
Although in R (on the application of Hooper) v Secretary of State for Work and Pensions [2005] UKHL 29, above n 77 and R (on the application of Carson) v Secretary of State for
Work and Pensions [2005] UKHL 3337, [2005] 2 WLR 1369 the House of Lords has been
strict in its interpretation of Art 14.
80.
Rieme v Sweden (1992) 16 EHRR 155; Cyprus v Turkey (1976) 4 EHRR 282.
Znamenskaya v Russia [2005] 2 FCR 406: ‘it has also been the Convention organs’ traditional approach to accept that close relationships short of “family life” would generally
fall within the scope of “private life” ’ (para [27]).
82.
Pretty v UK (2002) 35 EHRR 1 para 61.
A Mowbray The Development of Positive Obligations under the European Convention on Human Rights by the European Court of Human Rights (Oxford: Hart, 2003).
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars 3. The right to protection from torture or inhuman or degrading treatment is protected by Art 3 of the ECHR. This Article also imposes positive and negativeobligations on the state. Not only must the state not torture or inflict inhuman ordegrading treatment on its citizens, it must protect citizens from torture or inhumanor degrading treatment at the hands of other people, insofar as it is reasonable.84Hence, if the state is aware that children are suffering abuse and fails to offer themprotection, the state is said to thereby infringe the children’s rights under Art 3.85 Ofcourse, not all carers will be able to describe their position as amounting to tortureor inhuman treatment, but certainly quite a few carers may be able to claim that theirstandard of life has reached such a level. Further, although the obligation to protectchildren and other vulnerable people from inhuman or degrading treatment is estab-lished, it is not clear that the courts would be as willing to find an obligation on thestate where the individual is competent.
From a broader perspective, in Martha Fineman’s The Autonomy Myth86 the claim is made that as carers provide much benefit to society there is a debt owed to themby society. She explains: ‘The theory of dependency I set forth develops a claim of “right” or entitlement to support and accommodation from the state and its institutions on the part ofcaretakers – those who care for dependents. Their labor should be treated asequally productive even if unwaged, and should be measured by its societal value,not by economic or market indicators. The fact that dependency work has beenun- or undervalued in the market is an argument for governmental interventionand restructuring to mandate adjustment and market accommodation, as well asmore direct reparations.’87 ‘Caretaking thus creates a “social debt”, a debt that must be paid according to principles of equality that demand that those receiving social benefits also sharethe costs when they are able. Far from exemplifying equal responsibility fordependency, however, our market institutions are “free-riders”, appropriating thelabor of the caretaker for their purposes.’88 It is not possible here to analyse in depth the sophisticated argument which shedevelops. There are, however, some dangers with it. One might argue that if societyis liable to ‘pay’ for care, it might feel a greater entitlement to police the standard ofcare and to consider whether there are economically more efficient ways of providingcare.89 As we have seen in all too many areas, carers are barely acknowledged. Medical lawand ethics have been obsessed with an individualised notion of rights for too long.
M Fineman The Autonomy Myth (New York: New Press, 2004).
M Eichner ‘Dependency and the liberal polity: on Martha Fineman’s The Autonomy Myth’ (2005) 93 California Law Review 1285.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars Perhaps understandably, the impetus behind medical law has been to empower patientsagainst the authority of medicine and its professionals. There was nowhere for medicallaw or ethics to go until there was a serious challenge to medical paternalism. Thefocus on the rights of autonomy and bodily integrity was essential if there was to bea challenge to the supremacy of the professional medical opinion. But the focus onthese rights too readily created a legal image of an isolated individual patient.
The invisibility of carers in the law has more to it than that. Caring is a gendered activity. It is seen as ‘women’s work’ and as such is ignored in the ‘male gaze’. Imentioned earlier the enormous economic value of care and yet it is not given therespect or recognition that other higher profile ‘economically productive’ activitieshave. By describing care work as ‘voluntary’ and ‘informal’ it is marginalised asunimportant. Hence, the professional doctor–patient relationship is subject to carefuland extensive legal regulation and is dealt with at length in the court reports and thewider media. The carer–patient relationship, of greater significance to many patients,is ignored.90 This all has the impact of care work being unvalued and unnoticed. Allof this is convenient to a society in which ‘men’s’ work goes rewarded and valorised,while ‘women’s’ work is invisible and unrecognised. The lack of respect owed tocaring has played a significant role in the unequal economic position of women.91 The legal image of the isolated patient whose rights need protection is a fiction.
Here, as often in legal writing, the law presumes an autonomous competent man whocan enforce his rights. The reality is that we are ignorant, vulnerable, interdependentindividuals, whose strength and reality is not in our autonomy, but our relationshipswith others.92 Many of those rejecting the individualised vision of rights have turned to ethics of care as an alternative.93 The ethic of care has been particularly developed and foundsupport among feminist thinkers. It promotes a vision of us with mutually interde-pendent relationships as the norm around which legal and ethical responses shouldbe built. Carol Gilligan explains, ‘The ideal of care is thus an activity of relationships,of seeing and responding to need, taking care of the world by sustaining the web ofconnection so that no one is left alone’.94 Our visions of ourselves must be fluid: we cannot easily break down into ‘me’ and ‘you’ when in a relationship. To harm a child is to harm her carer; to harm the careris to harm the child. To claim, as some judges shockingly have done, that a fathercan be violent towards his child’s mother, but be committed to the child, is to separateindividuals inappropriately.95 The values that are promoted within an ethic of care are J Finch and D Groves ‘Community care and the family’ (1980) 9 Journal of Social Policy C Ungerson ‘Thinking about the production and consumption of long-term care in Britain: does gender still matter?’ (2000) 29 Journal of Social Policy 623.
92.
C Meyer ‘Cruel choices: autonomy and critical care decision-making’ (2004) 18 Bioet- hics 104.
93.
Eg C Gilligan ‘Moral orientation and moral development’ in E Kittay and D Meyers (eds) Women and Moral Theory (Totowa: Rowman and Littlefield, 1987); M Friedman, Liberating
Care (Ithaca: Cornell University Press, 1993); S Sevenhuijsen Citizenship and the Ethics of
Care (London: Routledge, 1998); R Groenhout Connected Lives: Human Nature and an Ethics
of Care (Totowa: Rowman and Littlefield, 2004); V Held The Ethics of Care (Oxford: Oxford
University Press, 2006).
94.
C Gilligan In a Different Voice: Psychological Theory and Women’s Development (Cambridge MA: Harvard University Press, 1984) p 73.
95.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars not isolated autonomy or the pursuance of individualised rights, but rather those ofpromoting caring, mutuality and interdependence.
Here are the key aspects of the ethic of care as they relate specifically to carers: 1. The inevitability of interdependence, not self-sufficiency
Care is an inevitable part of life.96 At the very start of life, we are in a relationshipof dependency, and often we are just as dependent at the end of life. Care is a dailyreality for most people. It is true that during the course of life the balance betweencaring and being cared for may shift. But, caring is the very essence of life.97 It ispart of being human. Without it, society would soon collapse. The law must regardrelationships as key to its thinking and not ignore them.
2. The value of care
Care ethicists would argue that not only is care an inevitable part of life, but that itis a good part of life. As Robin West puts it: ‘Caregiving labor (and its fruits) is the central adventure of a lifetime; it is what gives life its point, provides it with meaning, and returns to those who give it somemeasure of security and emotional sustenance. For even more of us, whether ornot we like it and regardless of how we regard it, caregiving labor, for childrenand the aged, is the work we will do that creates the relationships, families, andcommunities within which our lives are made pleasurable and connected to some-thing larger than ourselves.’98 Caring, then, is a ‘major life activity’99 that benefits not just the person receiving thecare, but also the person giving the care, and society more widely.100 From a feminist perspective there is a danger in seeking to have care valued. The danger is that they might be seen as justifying or encouraging women to undertakeunpaid care work. However, care ethics seek to ensure that value is attached to careso that those who undertake ‘love labour’101 are not disadvantaged. If society were toattach importance and value to care it might become an activity in which both menand women would seek to partake equally.102 F Williams ‘The presence of feminism in the future of welfare’(2002) 31 Economy and Society 502.
98.
R West ‘The right to care’ in E Kittay and E Feder (eds) The Subject of Care: Feminist Perspectives on Dependency (Lanham: Rowman and Littlefield, 2002) p 89.
99.
A Hubbard ‘The myth of independence and the major life activity of caring’ [2004] 8 Journal of Gender, Race and Justice 327.
100. L. McClain ‘Care as a public value: linking responsibility, resources, and republicanism’
[2001] 76 Chicago-Kent Law Review 1673; M Daly ‘Care as a good for social policy’ [2002]
31 Journal of Social Policy 251.
101. See K Silbaugh ‘Turning labor into love: housework and the law’ [1996] 91 Northwestern
University Law Review 1.
102. J Williams ‘From difference to dominance to domesticity; care as work, gender as
tradition’ [2001] 76 Chicago-Kent Law Review 1441. There would also need to be changes in
the employment market to ensure that employed work was a realistic and attractive option for
women: T Knijn and C Ungerson ‘Introduction: care work and gender in welfare regimes’
[1997] 32 Social Politics 323.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars 3. The relational approach of ethics of care
One of the most attractive aspects of an ethic of care approach is that it seeks to moveaway from an atomistic picture of individuals, with rights that compete against eachother, to a model that emphasises the responsibilities of people towards each other inmutually supporting relations.103 So rather than the focus of the inquiry being whetherit is my right to do X, the question is what is my proper obligation within the contextof this relationship.104 Virginia Held makes the point by contrasting ethics of care andan ethic of justice: ‘An ethic of justice focuses on questions of fairness, equality, individual rights, abstract principles, and the consistent application of them. An ethic of care focuseson attentiveness, trust, responsiveness to need, narrative nuance, and cultivatingcaring relations. Whereas an ethic of justice seeks a fair solution between compet-ing individual interests and rights, an ethic of care sees the interest of carers andcared-for as importantly intertwined rather than as simply competing.’105 It should be added that Held makes it clear that an ethic of care includes justice: ‘There can be care without justice. There has historically been little justice in the family, but care and life have gone on without it. There can be no justicewithout care, however, for without care no child would survive and there wouldbe no persons to respect.’106 There is another important aspect of this issue. That is that emphasising interdepen-dence and mutuality means that the division between carer and cared for dissolves.
As Michael Fine and Caroline Glendinning argue: ‘Recent studies of care suggest that qualities of reciprocal dependence underlie much of what is termed “care”. Rather than being a unidirectional activity in whichan active care-giver does something to a passive and dependent recipient, theseaccounts suggest that care is best understood as the product or outcome of therelationship between two or more people.’107 In truth there is often give and take in the ‘carer’ and ‘cared-for’ relationship. Theirrelationship is marked by interdependency.108 The ‘cared for’ provides the ‘carer’ withgratitude, love, acknowledgement and emotional support. Indeed, often a ‘carer’ willbe ‘cared for’ in another relationship. As Diane Gibson has argued, our society isincreasingly made up of overlapping networks of dependency.109 Clare Ungerson has convincingly argued that it is wrong to see the relationship between ‘carer’ and ‘cared for’ as one where the ‘carer’ has power over the ‘cared 103. G Clement Care, Autonomy and Justice: Feminism and the Ethic of Care (New York:
Westview, 1996) p 11.
104. Held, above n 94, p 1.
105. Ibid, p 15.
106. Ibid, p 17.
107. M Fine and C Glendinning ‘Dependence, independence or inter-dependence? Revisiting
the concepts of care and dependency’ (2005) 25 Ageing and Society 601 at 619.
108. T Shakespeare Help (Birmingham: Venture, 2000) and T Shakespeare ‘The social rela-
tions of care’ in G Lewis, S Gewirtz and J Clarke (eds) Rethinking Social Policy (London:
Sage, 2001).
109. D Gibson Aged Care: Old Policies, New Solutions (Melbourne: Cambridge University
Press, 2005).
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars for’.110 The ‘cared for’ might have a range of powers they can exercise. The emotionalwell being of the carer can depend on the attitude and response of the ‘cared-for’person to the carer. The ‘cared for’ has the power to make the life of the carerunbearable.
Of course, the concept of an ethic of care is not without its critics. Emily Jacksonhas recently described the ethic of care as ‘an inherently vague concept, which couldbe used to justify almost any plausible moral argument’.111 She points out that inrelation to euthanasia, ethics of care could be used to support or oppose euthanasia.
This is, with respect, a rather unfair criticism. Exactly the same thing could be saidabout the concept of human rights. Indeed, one should be highly sceptical of anybroad ethical approach that provides a single answer to a complex issue such aseuthanasia. An ethic of care, like the concept of rights, provides ethical tools withwhich to analyse a situation, but it does not provide the answer. The fact that it canbe used to support and oppose euthanasia should be seen as a strength, not a weakness,of the concept.
Jackson’s argument that the notion of care itself, which is at the heart of the approach, is vague has more merit. This, however, is to overlook the extensive workthat ethics of care theorists have done to give greater clarity to the concept of care.112Even if it does still lack precision, this is equally true of concepts such as the rightto dignity, justice or privacy, which are widely respected and used by lawyers andethicists.
Another common criticism of an ethic of care relates to a rather unfortunate aspect of its history.113 Ethic of care rose to prominence with the writing of Carol Gilligan114who sought to distinguish between a ‘male’ approach to ethical issues, which focusedon concepts of justice; and a ‘female’ approach to ethical issues, which focused onconcepts of care. While undoubtedly the ‘grandmother’ of care ethics (and who wouldwant to speak ill of their grandmother), the ‘second generation’115 of care ethicistshas tended to downplay the argument that the ethic of care is a female way ofthought.116 Further, the sharp divide between justice and care is not normally reliedupon nowadays. An ethic of care wishes to promote relationships, but only thoserelationships which are just. As Robin West puts it: 110. C Ungerson ‘Social politics and the commodification of care’ [1997] 4 Social Policy 362.
111. Jackson, above n 1, p 22.
112. Eg Held, above n 93; D Koehn An Ethic of Care (London: Routledge, 1998).
113. Jackson, above n 1, p 22 suggests that ethics of care has nothing to say about social
policy. This is simply untrue: see, eg, O Hankivsky Social Policy and the Ethic of Care
(Vancouver: University of British Columbia Press, 2005).
114. C Gilligan In a Different Voice: Psychological Theory and Women’s Development
(Cambridge MA: Harvard University Press, 1982) pp 1–4 and 24–63.
115. Hankivsky, above n 113, p 2.
116. Repeats of the experiments used by Carol Gilligan in European countries have not found
the differing responses to ethical issues tied to sex in the way she did: A Vikan, C Camino and
A Biaggio ‘Note on a cross-cultural test of Gilligan’s ethic of care’ (2005) 34 Journal of Moral
Education 107.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars ‘Relationships of care, untempered by the demands of justice, resulting in the creation of injured, harmed, exhausted, compromised, and self-loathing “givingselves”, rather than in genuinely compassionate and giving individuals, are ubiq-uitous in this society.’117 So arguments that an ethic of care perpetuates assumptions that women are naturallydrawn to caring roles,118 or that it overlooks the potential for abuse within relation-ships, are usually based on a rather old-fashioned (mis)understanding of what theethic of care is about.
Under an ethic of care the practice of caring would be hugely valued within society.
Carers would, far from being hidden, come to represent a norm. Social structures andattitudes would need to be set up to encourage and enable caring. This would requireadequate remuneration of carers: not the payment of benefits of the kind paid to those‘unable to work’, but payment acknowledging the key role they play.119 Work wouldneed to be done to ensure that the burden of caring did not fall on the few but wasshared across the community.
When assessing the rights of any individual or the medical needs of an individual, such a person would have to be considered in a situational context. Never should itbe a matter of assessing person X in isolation. Rather each person’s needs and rightswould have to be considered in the context of their relationships. For example, in thesocial work literature on carers, there is much debate over whether respite care shouldbe regarded as a service for the carer or cared-for person.120 Of course the reality isit is a service for both people. The carers’ legislation in promoting the separateassessments of both carer and cared for creates an artificial and inappropriate divide.
The better approach is to assess and provide those services which will promote thecaring relationship.
Earlier reference was made to the Mental Capacity Act 2005 and the fact that although carers’ views about what would be in the best interests of the patient canbe taken into account, the decision can only be made based on what is in the bestinterests of the patient, and the interests of the carers are not mentioned. It is arguedthat this is misguided. It is not possible to consider the incompetent person withoutconsidering the well being of the incompetent person’s carer. The interests of the twoare intertwined. No carer could possibly undertake the task of caring if every decisionwhich has to be made was solely on the basis of what is in the interests of the cared-for person. No one would want to be cared for in a relationship in which the carer’sinterests counted for nothing. The relationship of caring does, and should, involvegive and take. It would not be in the interests of a cared-for person to be in arelationship which was utterly oppressive of their carer. What is in their interests isto be in a relationship with their carer which promotes the interests and well being 117. R West Caring for Justice (New York: New York University Press, 1997) p 81.
118. Jackson, above n 1, at 22.
119. The payment of carers has been said to carry dangers of causing the ‘marketisation of
intimacy and the commodification of care’; C Ungerson ‘Cash in care’ in M Harrington Meyer
(ed) Care Work: Gender Class and the Welfare State (London: Routledge, 2000) p 69.
120. B Gillies ‘Acting up: ambiguity and the legal recognition of carers’ (2000) 20 Ageing
and Society 429.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars of both of them.121 It is, therefore, argued that when considering the best interests ofan incompetent person, such an assessment must consider their well being in thecontext of their relationships. This might involve making decisions which in a narrowway do not explicitly promote the incompetent person’s welfare or even slightlyharms it, if that is a fair aspect of a caring relationship which is a necessary part ofthe incompetent person’s well being.
An important aspect of the ethic of care, but one that is often overlooked by care ethicists, is that part of valuing and promoting caring relationships is the protectionof people who are rendered vulnerable in caring relationships. We need to promote‘just care’.122 There is a danger that an ethic of care can valorise care.123 We knowthat under the label of care disturbing levels of abuse of vulnerable adults hasoccurred. It is essential that the ethic of care promotes only those relationships thatdo not lead to the mistreatment of either party. There is a tension in ethics of carethinking which, while focussing on the relationship, must not lose all sight of theimpact of that relationship on the individuals within it.
So, what about Michael, the man refusing to consent to a hip replacement, I posited at the start of this paper? Could it ever be appropriate to claim that the interests ofhis carer would justify forcing the operation upon him? Because if not, and if the‘right of autonomy of the patient’ always trumps the interests of carers, it might beasked whether, in reality, there is much point is seeking to emphasise the interests ofcarers.
In an extreme case, I think it would be appropriate for Michael to be required to undergo the operation. If the burden of caring for Michael without the replacementhip would place on the carer an enormous burden (eg it would pose serious risks tothe carer’s health) and where Michael wishes that caring relationship to continue,then it may be part of his responsibility to undergo the operation.124 Indeed, it maybe far from straightforward what Michael wants in this scenario. He has said that hedoes not want the operation, but presumably he wants the caring relationship tocontinue. No doubt he does not want to place oppressive burdens on his carer. Thedifficulty for him is that the law cannot meet these conflicting wishes. If this is arelationship of long standing which is one that the law should respect (eg there hasbeen no abuse) then the law must reach the decision that encourages and enables thatrelationship to continue. If that requires the operation, so be it. And, in any event, asindicated, it is not obvious that it would be infringing rights to autonomy if, whenconsidering what Michael wants in this situation, we consider the full range of hisconflicting wishes.
A few months ago the Commission for Social Care Inspection had this to say aboutthe position of carers: 121. For a development of this approach in relation to parents and children, see J Herring ‘The
Human Rights Act and the welfare principle in family law – conflicting or complementary?’
[1999] CFLQ 223.
122. C Koggel ‘Care and justice; re-examined and revised’ [1999] Paideia 24 December.
123. B Hughes et al ‘Love labour’s lost?’ (2005) 39 Sociology 259.
124. For an excellent discussion on the importance of responsibilities in medical law and
ethics, see M Brazier ‘Do no harm – do patients have responsibilities too?’ [2006] Cambridge
Law Journal 397.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars ‘Over time, the day in, day out pressures on family carers were seen to wear people down. Coping with a mix of physical and mental problems was said bycarers to be particularly burdensome. Despite the higher profile of carers’ needs,and improvements in the number of separate assessments being done, this studyfound an excessive strain on some family members, especially partners who werethemselves elderly and frail. In practical terms, there appeared to be still too fewservices available in some places specifically to respond with speed and flexibilityto carers’ assessed needs and professionals still tended to be relying excessivelyon the commitment of carers.’125 The activities of carers are undervalued in our society and the caring is done by someof the most powerless people within our society.126 Notably, women are dispropor-tionately involved in caring.127 There is a serious lack of resources for those caringfor others.128 As Clements points out, ‘the solution and social exclusion many carersexperience are not inevitable or necessary consequences of caring, but social mani-festations of a disabling environment’.129 Few would disagree. What is less straightforward is the way to proceed. As already discussed, the ‘natural’ response for lawyers is to call for a rights-based approachseeking a variety of ways of promoting the human rights of carers and to emphasisethe economic benefits provided by carers. However this, it is suggested, is inimicalto the notion of caring itself. To see cases of caring as involving the rights of thecarer, the person cared for and the others with relevant interests clashing against eachother and having to be weighed against the wider social good is to overlook the truenature of caring, which involves relationship, mutuality and interconnection.
The government policy towards older and disabled people can appear confused.
We have already seen the government’s claims to take the role of carers seriously.
Yet, at the same time, the government has emphasised the importance of older peoplebeing independent. For example, the government in March 2006 introduced a raft ofmeasures to enable older people to be given the choice of living at home.130 The AuditCommission produced an important paper entitled Older People: Independence andWell-being,131 which accepted that care is essential to enable independence.
This paper has advocated an approach based on an ethic of care. Such an approach recognises that relationships of dependency within ‘caring relationships’,far from being problematic, are in fact the ‘norm’. The approach to such casesshould not isolate the individual interests of the parties and seek to analyse themseparately, as the Carers (Equal Opportunities) Act 2004 does with its individualassessments for carers and the cared for. Instead, we should promote ways of sup-porting and upholding the caring relationships. Further, there should not be a sharp 125. Commission for Social Care Inspection Leaving Hospital Revisited (London: Commis-
sion for Social Care Inspection, 2005).
126. J Toronto Moral Boundaries (London: Routledge, 1993) p 113.
127. D Bubeck Care, Gender and Justice (Oxford: Clarendon Press, 1995).
128. J Read ‘Will the Carers and Disabled Children Act 2000 make a difference to the lives
of disabled children and their carers?’ (2002) 28 Child Care, Health and Development 273.
129. Clements, above n 49.
130. Department of Health More Older People to be given Choice to Live at Home (London:
Department of Health, 2006).
131. The Audit Commission Older People: Independence and Wellbeing (London: The Audit
Commission, 2004) para 94.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars divide between the person who is being cared for and who the carer is.132 Rarely isit that simple.
This is not to idealise caring. In his book, The Selfish Pig’s Guide to Caring, Hugh Marriott, clearly a devoted carer himself, has this to say: ‘We didn’t apply for the job. Most of us don’t have a vocation for it. We’ve had no training. We’re certain we aren’t much good at it. Plus, and this is the nub ofthe matter, we’ve got our own life to lead. Are we expected to throw that awaybecause of somebody else’s disability? We’ve got things to do, places to go. Andnow it looks as if we might not be able to.
But aren’t we just as important as they are? Why are we expected to sacrifice ourselves for somebody else? And yes, I mean sacrifice. We’re not talking aboutgiving up five minutes of time once or twice a week. Or putting off a holiday fromthis year to next. We’re talking about changing our entire way of life. The old onewasn’t perfect, but it was the best we could do. This new one isn’t even ours. It’ssomebody else’s life. And it’s one that doesn’t suit us at all.’133 This is no glamorised self-less caring, but the mucky, nasty, frustrating caring of reallife.134 Care is hard work; extremely hard work.135 Carers can often feel trapped: theirlife goals come to an end and they must adopt the role of carer while the rest of theirlife is put on hold.136 But it is caring that is the heart of life.
We are not self-sufficient but interdependent; not isolated individuals but people in relationship; not people with rights clashing with those who care for us and forwhom we care, but people who live with entwined obligations and interests with thosewe love. We are not easily divided up into carers and cared for. We are in mutuallysupportive relationships. We need then a legal and ethical approach that promotes justcaring: respects it; rewards it; and protects those rendered vulnerable by the caringrole – an approach which has relationship at its heart. After all care is about love.
And love is not about ‘you’ and ‘I’; it is about ‘us’.
132. E Nicholas ‘An outcomes focus in carers assessment and review’ (2003) 33 British
Journal of Social Work 31.
133. Marriott, above n 69, p 9.
134. K Abrams ‘The second coming of care’ (2001) 76 Chicago-Kent Law Review 1605; J
Oliver and A Briggs Caring Experiences of Looking after Disabled Relatives (London:
Routledge, 1985).
135. Hubbard, above n 99; Ungerson, above n 110.
136. Department of Health, above n 57, para 69.
2006 The Author. Journal Compilation 2006 The Society of Legal Scholars

Source: http://www.aacy.org/publications/whereare.pdf