CPD done, dusted and accepted!

Jan 19, 2012 13:30

So now you lot have to read it. Actually, no you don't. Brb making toast.

“It’s the law: but is it right?” Legal and ethical aspects of autonomy, duty of care and the unwise choice: a case study in community care.

The above remark, made by a community nurse as we left the home of a man who had declined any further nursing and social care intervention despite apparently being in need of both, highlights a fundamental conflict that can often arise in community social work. Such conflict may be particularly acute when working jointly with health colleagues. All are bound by the same laws but health professionals may be more likely to emphasise care and the duty to intervene whereas social work values and practice with adults tends to prioritise rights, independence and choice (Banks, 2006; Ife, 2008; Yeung, Ho, Ho & Chan, 2010). However, achieving a good outcome and acting in the best interest of the service user are not simply decided by which of these two principles ultimately triumphs.

In the following case study, individuals have been anonymised to protect their confidentiality.

R was an 84-year-old man who lived with his son P, his primary carer. He had had no involvement from social care since coming to ******** in 2009. Community nurses visited every six weeks to change a catheter that he had managed himself with minimal help for ten years.

In late October 2011 S, a community nurse, discovered a stage IV (European Pressure Ulcer Advisory Panel and National Pressure Ulcer Advisory Panel, 2009) pressure ulcer on his foot and further ulcers elsewhere and contacted the social work Emergency Duty Team requesting immediate admission to residential care. REDACTED Services policy is that stage IV ulcers trigger Safeguarding of Adults from Abuse (SAFA) protocols (REDACTED County Council, 2011). My manager considered instigating a SAFA investigation and asked me to visit to gather more information, and to assess R’s need for care.

At assessment, P reported that following a hospital stay in November 2010 to repair a broken hip, R’s confidence had gradually deteriorated to the point that he had been entirely confined to bed for the past two weeks. He had repeatedly rejected suggestions by P that he have home care for some months. R was very hard of hearing; communication between us had to take place by writing questions and statements in large print, giving them to him to read and hearing his answer.

R rejected the idea of “going into a home” and of being “pulled about” by having regular help with personal care. He confirmed he had never wanted this. He indicated he might consider a short respite stay to give his son a break, and possibly thereafter home care to make drinks during the day. He was admitted next day to a nursing home funded by social care. Managers decided not to treat this as a case of abuse through neglect (Action on Elder Abuse, 2006), as P had tried to get help but R had refused it.

At review after a week in the nursing home, R demanded he go home immediately, whether or not care or equipment (profiling bed, air mattress) was yet available, threatening to “sue” if I did not arrange this at once. S, P and R’s GP indicated that there were concerns about his mental state. He had exhibited symptoms of confusion and paranoia in the past and in the present appeared confused as to time of day and made statements with no apparent basis in reality. There was therefore reason to consider the Mental Capacity Act (UK Department of Health, 2005). A decision had to be made about his social care (to stay or return home) but there were grounds for suspecting R might lack capacity to make it. I carried out a mental capacity assessment (UK Ministry of Justice, 2009) and concluded that he was able to understand the risks of returning home and weigh them sufficiently and therefore had the capacity to make this specific decision. He returned home. Once there, he refused home care and would not allow nurses to dress his pressure ulcers, saying: “I’m too old to get any better “; “I can take responsibility for my own health: it’s the law”.

The community nurse and GP disagreed with R’s decision and with me for supporting it. S stated that “no-one in their right mind” would ask to return home and refuse care, and that I should have sought a medical assessment under the Mental Health Act (UK Department of Health, 1983, s. 2)with a view to R being forcibly detained in the nursing home for treatment. His GP voiced concerns that we would be found negligent if R died as we had a “duty of care” towards him.

The legal position with regard to refusal of care and the necessity that a person gives (or withholds) ‘informed consent’ to treatment (Johnson, 2010) appears to be clear. The Mental Capacity Act (UK Department of Health, 2005) and its Code of Practice (UK Ministry of Justice, 2009) apply to both medical and social care staff. They require that a person’s capacity to make autonomous decisions is assumed in the absence of clear indications to the contrary, and that it is incumbent on professionals to support service users in making specific decisions through a clear exploration of benefits and risks, but never to appropriate decision making to themselves if they disagree with the person’s decision or even if they believe that decision is unwise. Case law has established that respect for autonomy overrides the principle of duty of care towards another - which arises if harm may reasonably be foreseen consequent upon acting or failing to act (established in Donoghue v. Stevenson (1932)) - on the basis that “foresight of harm alone [is] not sufficient to create a duty to guard... against [someone’s] own folly.” (Jebson v. Ministry of Defence, 2000).

Autonomy as a principle sits within a rights-based formulation of law, the predominant discourse in UK law since the passing of the Human Rights Act 1998 (UK Home Office, 1998). This made it mandatory for all public authorities to act in accordance with the European Convention on Human Rights (ECHR) (Council of Europe, 2010), and is the driving force behind the provisions of the Mental Capacity Act 2005 (Dimond, 2008; Johnson, 2010). The relevant article is Article 8, the right to privacy and respect for family life; legal challenge has determined that this explicitly includes bodily autonomy (X and Y v. The Netherlands, 1985).

In ethical terms, the concepts of both duty of care and respect for autonomy arise from the principlist tradition usually associated with Kant (1797/1996). They are absolute obligations, dependent neither upon the relations between the parties nor the consequences arising. Codes of practice of professional organisations are commonly expressed in terms of principle (e.g. General Social Care Council, 2010; Nursing and Midwifery Council, 2008). It has been argued that doctors and nurses tend to prioritise care over autonomy, whilst social workers do the opposite (Yeung et al., 2010). Nevertheless, biomedical ethics contains a strong tradition of respect for autonomy (Beauchamp & Childress, 2008; Molyneux, 2007, 2009).

Molyneux argues (2007) that patient autonomy not only potentially contributes to welfare (which is not always the same as improved physical health, though health professionals such as, perhaps, S in the case study, commonly conflate the two) but can be regarded as a form of welfare in itself. He further develops his argument (2009) in favour of doctors respecting patient autonomy quite apart from the duty to promote welfare (included in the ethical principle of 'benevolence': Beauchamp & Childress, 2008).

Ife (2008) is critical of an approach which puts ‘human rights’ as currently defined in Europe above other human needs, such that: “the construction of human rights...in documents such as codes of ethics and introductory texts often treats human rights as it they are self-evident and non-problematic” (p. 9) and: “by defining something as a human right we are claiming that it has priority over other claims of right” (p. 12). Ife sees the law, in claiming the foremost position in defining and defending rights as potentially disempowering to social workers and the background to a growing tendency toward defensive practice.

In R’s case, putting autonomy as a first order right above rights to good care and the need (in the context of the challenge from health colleagues and advice from management to follow protocols very closely explicitly framed in terms of defensibility) to act within the law, might be seen to result in insufficient attention to his total welfare. Capitalist western society can thus claim to prioritise ‘human rights’ (and legally define what they are and which ones have legal protection, e.g. autonomy in the Mental Capacity Act, 2005) whilst reducing expenditure on welfare (Ife, 2008). It was certainly cheaper for the local authority, of which a social worker is an employee as much as he or she is a professional acting on behalf of the client, to support R’s right to refuse care.

What of alternatives to principlist and rights-based ethics? Banks (2006) contrasts ethics based on universal principles with those arising from the moral character of the agent (virtue ethics, see e.g. Gardiner, 2003) or the relationship between the agent and one or more others (the ‘ethic[s] of care’, see e.g. Featherstone, 2010; Lloyd, 2006). Virtue ethics may have been behind nurse S's idea that we should not have withdrawn care on the grounds that a truly caring individual determined to act to promote R's welfare would have found a way around his objections, even to the point of denying or bending his legal rights. There is also an argument that in practice ethics are most often informed by feelings about a situation - so-called 'emotivist' ethics (Meacham, 2007). S's objection in the case of R was explicitly couched in terms of her feelings as to what ‘should’ happen and what 'wasn't right', supported by the moral claims of a professional trained to make people well.

Difficulties with a virtue ethic include the risk of paternalism (Yeung et al., 2010), the idea that a professional knows best, and to potentially oppressive practice towards people seen as less knowledgeable or who are less powerful than the ‘virtuous’ agent . Moreover, the very concept contains a tautology- virtuous conduct is what a virtuous person does - and is of little use when considering which of two opposing courses of action, both of which could be seen to be virtuous (in this case, prioritising R's choice or putting his physical health first), is preferable. Gardiner says: “two people might both behave well when resolving the situation in different ways.” (Gardiner, 2003, p. 301) He regards this as a strength of virtue ethics, in that it avoids the 'only one right answer' rigidity of principlist approaches and acknowledges that “emotions are an integral and important part of our moral perception” (ibid). In the case of R, however, one answer had to found, at least in the short term, and it was possible to have an emotional response both to his suffering and to the prospect of him being coerced into having care.

The intervention with R altogether lasted less than four weeks and the actual contact time was perhaps eight hours in total. It would almost certainly have been better to have had significantly more time in which to build a relationship with R and P, to become familiar with R's personal history, the impact of his hearing impairment and modes of communication and therefore perhaps to allow him incrementally to learn to trust outside help and find an emotional space to consider the benefits of home care, not least as far as supporting P in his caring role. P did in fact say something to the effect that he felt his father might be more willing to accept care if he was there to mediate it, but it proved difficult to arrange calls to start at home to mesh with P's working hours.

The ethic[s] of care (Featherstone, 2010; Lloyd, 2006) stresses the social and political context within which caring as an activity takes place. It questions assumptions about the value modern society puts on paid work over caring work - a major cause of tension for P in responding to his father's needs - and the fact that structures of professional care are organised much more to 'take over' from family carers than to support them. R's reluctance quite possibly stemmed in part from a perception of his home as a private family space into which he did not want the 'state' intruding. From an ethic of care position, confident assumptions about autonomy and the freedom of the individual appear simplistic. Lloyd (2006) remarks that:

“ often, social workers’ decisions about how best to assess and respond to need are taken at a time when an older person’s capacity to engage in decision making is compromised by shattering events such as... serious illness and loss of mobility. At such times, it is difficult to see how the rational exercise of choice and control is viable or desirable.” (p. 1180)

- although, equally well, to assume that it is always impossible in such situations risks infantilising those who are, after all, adults. Teasing out a genuine, autonomous decision from a web of expectations, relationships, assumptions and fears is not a simple or quick process.

The law, codes of practice and policies can act as a brake on the power of the medical profession and the social worker as representative of the state. They can reduce the impact of purely personal opinion and emotion (including the fear of taking a risk) and offer a framework within which to act, to promote the voice and decision-making of the service user and, in case of challenge, to show that due consideration was given to preserve his/her legal rights. Ethical frameworks based on concepts of what ought to be done and universal application can, to an extent, shield against favouritism, arbitrary decisions and some of the inequalities that arise from uneven access to resources, adverse life histories and disability. However, relying on these alone may be insufficient in the face of the real lives of service users and the organisational and social context of statutory social work and National Health Service care, to result in a good outcome for the individual and the family. If at all possible, it is better to take time to assess needs and wishes as fully as possible than to have to make quick decisions based on short acquaintance. The outcome in the case of R may have been exactly the same had the former been the case, but without the opportunity at least to try, one could never be entirely sure.

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