Patient Involvement in Decision-making: The Right to Self-determination

Chapter 2
Patient Involvement in
Decision-making: The Right to

In modern law medical paternalism no longer rules.1

The dye is now cast: the rhetoric, if not the reality, of the relationship between physician and patient has been irrevocably changed by contemporary recognition of the importance of patient self-determination.2

To set the context for an analysis of the consent and property models, the concept of patient self-determination is discussed in this chapter. Firstly, the conception of self-determination adopted in this book is clarified; then the basis for protecting self-determination (that patients want it, that it is associated with better clinical and health outcomes, and that it is a fundamental right) is outlined. As conceived in this book, patient self-determination comprises (a) the right to bodily integrity and (b) the right to make decisions regarding treatment.

The ways in which patient self-determination may be suppressed or expressed are described. Patient self-determination may be suppressed by medical paternalism or by instrumentalisation (the use of persons as instruments to achieve the doctor’s goals, as happened in the Tuskegee and Willowbrook scandals3). The latter could be regarded as a crime, and so it has been excluded from further discussion, and attention is focused on paternalism.

Self-determination is expressed when the patient, rather than the doctor, is the ultimate arbiter of what treatment may or may not be given, and when. It is shown in this chapter that this decisional authority is moving from the hands of the doctor to those of the patient, but a lot more needs to be done. The progression from paternalism to ‘patient-centred care’ is described and current initiatives to promote patient self-determination in the UK National Health Service are outlined.

The protection of patient self-determination entails the following elements: (a) recognition of, and respect for, the patient’s right to decide what treatment to have or not to have; (b) provision of an enabling climate for the patient to make self-determined choices (ensuring effective communication and building trust); and (c) having regard for the context (social, cultural, emotional, etc.) in which the patient has to make his or her decision. In keeping with the ecology paradigm adopted in Chapter 1, self-determination is viewed not in isolation but in the context of the doctor–patient relationship. This relationship is critical to the fulfilment of the three elements listed above. The literature on various models of the relationship is briefly reviewed and it is concluded that the ‘collaborative’ approach to doctor–patient consultation offers the best protection for patient self-determination as defined in this book.

Patient Sovereignty

The underlying principle of this book is that every person has a right to self-determination in respect of the medical treatment that they receive. This right was famously affirmed by Cardozo J in the landmark US case of Schloendoff v. Society of New York Hospital:

… every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent, commits an assault.4

It was reaffirmed by Lord Donaldson MR in the UK case Re T:

An adult patient who … suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment, to refuse it or to choose one rather than another of the treatments being offered … This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.5

In the same vein, Butler-Sloss said in Re MB that:

A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death.6

This right is commonly referred to in legal and other texts as ‘autonomy’ but the term is somewhat amorphous, each school of thought moulding it to suit their purpose. For example, philosophers view autonomy as an attribute of personhood, while psychologists regard it as a behaviour.7 Even among philosophers, concepts of autonomy vary. Autonomy could refer to freedom from control by others. It could also mean freedom from any factor which prevents one from making a choice consistent with one’s values. In health care, the word autonomy is used with various interpretations.8 As Switankowsky put it, autonomy is ‘a philosophical concept that is riddled with psychological complexities and individual peculiarities’.9

When a judge uses the term he/she probably takes it as no more than a shorthand for the right of the patient to decide what may or may not be done to his/her body. It is unlikely that the judge has considered any philosophical analyses of the term or anticipates that his/her use of the term will be subjected to such analysis. Coggon, for example, has noted that ‘[i]t is rare for a judge to provide an explicit, philosophical investigation of autonomy’.10

In order to avoid (to the extent that this is possible) some of the confusion associated with the diverse interpretations of the word ‘autonomy’, the term self-determination is used as an alternative to autonomy in this book. The essence of self-determination is the notion of a person who is able to decide, choose or act on the basis of his/her own volition rather than the dictates of another person or group of persons. Self-determination in health care is the antithesis of paternalism. As Lord Scarman put it, patient self-determination is ‘no more and no less than the right of a patient to determine for himself whether he will or will not accept the doctor’s advice’.11

At this juncture, it is worth clarifying the relationship between self-determination and the principle of bodily integrity, the latter being a common starting point for defining consent to treatment. The principle of bodily integrity holds the human body to be inviolate; a person’s body cannot be interfered with by another without that person’s willing agreement. It is protected by Article 3 of the Universal Declaration of Human Rights which states that ‘[e]veryone has the right to life, liberty and security of person’, and by constitutional provisions in some countries.12 This principle is one of the two components of self-determination (as defined in this book), the other component being decisional control. As Petersen puts it:

Self-determination is broader than bodily integrity in the sense that it concerns not only an individual’s body but also his or her actions and choices – including whether to engage in sexual relations, to marry or to bear children.13

The distinction between bodily integrity and self-determination was made in passing by Robert Walker LJ in an English case:

Every human being’s right to life carries with it, as an intrinsic part of it, rights of bodily integrity and autonomy – the right to have one’s own body whole and intact and (upon reaching an age of understanding) to take decisions about one’s body.14

This distinction is important in the context of this book because self-determination could be expressed (or suppressed) in clinical situations that do not necessarily entail touching the body. In such situations, there may be no physical violation of the patient’s bodily integrity, but decisional control is taken away from the patient, thus breaching his/her right to self-determination.

All accounts of self-determination have one thing in common: the individual should have a right to make his/her own decision/choice and should be allowed to exercise that right. Where they differ is in relation to two other elements: firstly whether a decision has to be rational for it to be a true expression of self-determination; secondly, whether, in expressing self-determination, the individual is obliged to consider third party interests.

Accounts that make rational decision-making a prerequisite for self-determination are excluded from further consideration in this book because the law, as it currently stands (see quotes above), does not require a patient’s decision to be rational in order for it to be accepted as legitimate, and any argument for this aspect of common law to be changed is outside the scope of this work.

Taking account of third party interests is presented in the literature as a key difference between the individualistic model of autonomy and the relational model.15 One could, however, argue that, in practice, the difference between the two accounts is not as substantial as is sometimes portrayed. In Chapter 6 the point is made that the notion of property in a coconut anywhere on an island is, at least in practical terms, meaningless to the man who is the sole inhabitant of that island – property is a function of the relationship we have with persons around us. In a similar way, self-determination is a function of our social interactions and experiences. The very idea of having individuals make their own decisions stems from the fact that each individual has different life experiences, interests, priorities, values and so on, all the result of interactions with other members of the community. There would be no basis for recognising individualism if we were all just individual anatomical and physiological entities (in other words, biological clones), devoid of any social identity. The idea of self-determination being a function of the patient’s social interactions and experiences fits with the ecology paradigm adopted in Chapter 1. It goes without saying, therefore, that any absolutely and purely individualistic notion of self-determination is rejected by this author.

The pragmatic question is to what extent should individuals be allowed to make their own decisions, unfettered by what the rest of the community thinks or wants? In other words, where should the balance between individual rights and communal interests lie? Lord Mustill referred to this balance in R v. Brown, albeit without specifying where the line is drawn:

… the state should interfere with the right of an individual to live his or her life as he or she may choose no more than is necessary to ensure a proper balance between the specific interests of the individual and the general interests of the individuals who together comprise the populace at large.16

Few in the western world would contest the right of the individual to self-governance.17 What is controversial, however, is where the line is drawn between this right and the interests of the community. In other words, to use a term that I return to in my adopted model of property (Chapter 6), what should be the stringency of protection of this right?

The extremist views on this question are moral individualism at one end and communitarianism at the other. Moral individualism18 holds that persons are egoistic and each person should determine what counts as moral good on his/her own, without reference to objective standards.19 To some minds (but not to this author) moral individualism could be taken as homologous with self-determination. As stated above, this notion of self-determination is rejected.

At the other end is communitarianism (as a philosophical concept rather than a political ideology) which emphasises the need to balance individual rights and interests with those of the community as a whole, and argues that individual people (or citizens) are shaped by the cultures and values of their communities. Unlike classical liberalism, which construes communities as aggregates of atomistic and egoistic individuals, it emphasises the role of the community in defining and shaping individuals.20

McLean regards the gap between these extremes as narrower than portrayed in the literature.21 Further she points out (and this is consonant with the ecology paradigm adopted in this book) that:

The lessons that the individualistic account can learn from the relational one are that the moral worth of decisions is predicted not only by the mere exercise of choice but potentially also by the impact of that choice on others.22

Studies have shown that patients make treatment decisions based on their social experiences, emotions, relationships and values.23 The question is not whether decision-making should be influenced by other-regarding considerations; we expect the individual’s decision to be influenced by experiences and relationships. Rather the question is whether the individual having made their decision, the decision should be followed to the letter or be modified by the doctor in the light of communitarian considerations. The issue becomes less contentious if contextualised against the predominant political tradition. In the western world this tradition is democracy, which gives each individual the same right to elect the political leadership and encourages equal participation of all citizens in governance. In democracies, the individual is the unit of society, but individuals are also subject to the laws and customs of society.

The conception of self-determination adopted in this book can therefore be encapsulated as follows. The patient has a right to determine what shall be done with his/her own body. Recognition of this right should manifest as proactive involvement of the patient in decision-making regarding his/her treatment. Acknowledging and acting in accordance with the extent to which a patient wishes to participate (or not participate) in making decisions is part of regard for that patient’s self-determination. In making their decisions, patients will be guided to varying degrees (from zero to maximum, as self-determined) by the opinion of their doctor and their personal experiences, values and relationships, but ultimately the decision should be theirs except where they have specifically and voluntarily opted to have the decision made for them by the doctor (excluding cases of incapacity, which are outside the scope of this book).

Involving Patients in Decision-making: What Does it Mean?

While it is widely acknowledged that patients should be involved in decisions about their treatment, there is no uniform articulation of what this means in practice.24 A patient may be ‘involved’ in the process but not be the one making the final decision. I submit that in such cases, the right to self-determination has not been upheld, except where the patient has specifically and voluntarily delegated to the doctor the responsibility for making the final decision.

What is important is the exercise of self-determination, as distinct from the question of who has made the final decision. Respecting the extent to which a patient wishes to participate (or not participate) in making decisions is part of respect for that patient’s self-determination. So long as the patient has been fully involved in the process of reaching a decision and is in control of how the choice of treatment is finally made, self-determination has been upheld. So long as this process has been applied and the chosen treatment is acceptable to the patient, the issue of who actually made the choice (patient or doctor) is a secondary matter. In other words, the patient’s right to self-determination is also expressed when he/she voluntarily delegates decision-making responsibilities to the doctor.

Patient involvement in treatment decision-making is commonly construed in terms of doctor–patient communication and the patient’s use of information to select a preferred treatment option. This construal has been criticised for being too narrow,25 but any exploration of patient involvement beyond this construal is outwith the scope of this work. The concepts underlying the property model proposed in this book are, however, congruent with the ‘stages and competences of involving patients in healthcare decisions’ enunciated by Elwyn et al., reproduced in Figure 2.1.

1. Implicit or explicit involvement of patients in decision-making process.

2. Explore ideas, fears and expectations of the problem and possible treatments.

3. Portrayal of equipoise and options.

4. Identify preferred format and provide tailor-made information.

5. Checking process: understanding of information and reactions (e.g. ideas, fears and expectations of possible options).

6. Checking process: acceptance of process and decision-making role preference, involving the patient to the extent they desire to be involved.

7. Make, discuss or defer decisions.

8. Arrange follow-up.

Figure 2.1 Stages and competences of involving patients in health-care decisions

Source: Elwyn et al.26

The Basis for Protecting Self-determination

If judicial or legislative intervention to enhance patient involvement in decision-making is to be advocated, there must be further justification for this, other than saying that paternalism is bad. Patients should be involved in making decisions about their treatment because they have a right to bodily integrity, because it is usually their wish to be involved27 and this increases their satisfaction with care provided,28 and because it is in their health interests to be involved.29 Also, if trust in health professionals and in the health system has been eroded, as observed by O’Neill,30 enhanced patient involvement in decision-making is one way of regaining confidence and trust. Above all, it is argued in Chapter 9 that the right to self-determination is so fundamental that it deserves protection as a distinct right.

Patients Want to Be Involved

Studies show that the majority of patients want to be involved in decision-making regarding their treatment.31 National patient surveys involving a total of more than one million patients in England showed that ‘involvement in decisions and respect for preferences’ is one of the aspects of health care that patients consider to be most important.32

The surveys showed, however, that many patients were not involved as much as they would like to be in decisions about their care and treatment, that ‘[a]lthough most patients are treated with dignity and respect by NHS staff, there are signs that care is still too often delivered in a paternalistic manner, with many patients given little opportunity to express their preferences or influence decisions about their care’.33 For example, one-third of outpatients said they had not received a clear explanation of treatment risks and just over half of stroke patients said they had not been involved as much as they wanted in decisions about their care and treatment in hospital, including 19 per cent who said they were not involved at all.34

The authors of one study concluded that ‘people vary substantially in their preferences for participation in decision making’35 but their study actually showed that ‘[n]early all respondents (96%) preferred to be offered choices and to be asked their opinions’.36 Clearly, the vast majority of patients (close to 100 per cent) want to participate in decision-making, so what can be concluded from this study is not that there is substantial variability in preferences for participation but that there is near unanimity in expression of a wish to be involved in decision-making. There are studies that report that many patients do not wish to be make decisions about their care.37 A closer look, however, indicates that what the patients are actually rejecting is mere, sheer choice. The same patients also say they would like to be informed about their treatment. The correct interpretation of these findings is that the patients do not want the doctor to just present options and leave them to choose one. Rather, they want the doctor to provide information and to explain why one option is recommended over the other, given the patient’s own circumstances. In this transaction, the patient develops trust in the doctor and may express his/her self-determination by opting to go with the choice recommended by the doctor.

Medical Paternalism: The Antithesis to Patient Self-determination

Although neither the Hippocratic Oath nor its modern incarnation, the Declaration of Geneva,38 makes reference to the patient’s preferences or views, it would be unfair and incorrect to say that doctors never took any cognisance of a patient’s views. They did. The point is that the patient’s views were not formally recognised as paramount, were not always specifically elicited, and were always trumped by what the doctor considered to be best for the patient. Even when the patient was engaged in decision-making, it was not because the doctor perceived an ethical or legal obligation to uphold the patient’s right to self-determination; rather it was because such patient involvement produced better health outcomes.39

No doubt, there is an inequality between patient and doctor regarding knowledge of, and insight into, the patient’s medical condition. This difference places the doctor in a position of power over the patient; thus, it is sometimes said that there is a fiduciary relationship.40 Most doctors would argue that this power has historically been exercised in a benign and benevolent manner, and that the doctor sought to do what was best for the patient. It could be argued that patients too accepted this; after all, doctors have always topped the polls of professionals most trusted by the public.41 Patients trusted the doctor to do what was best for them, and did not need to be coerced by the doctor into accepting the clinical recommendation. From time to time there was legal or ethical challenge42 to this state of affairs but by and large this ‘beneficent authoritarianism’ (as Pellegrino and Thomasma43 termed it) held sway.

With time, however, commentators and ultimately the public began to oppose what was described as medical paternalism.44 Paternalism is the philosophy of acting in the perceived best interests of the patient irrespective of whether this line of action contradicts the patient’s own wishes. It assumes that the patient is not able to decide for him/herself how best to pursue his/her own good, and could take the form of interference with the patient’s freedom of action, withholding of information or deliberate misinformation. It is argued that paternalism erodes the patient’s self-determination, violates the humanity of the patient and compromises healing.45 Vocal critics of paternalism asserted as follows:

… every act of paternalism will involve violating the principle of autonomy with regard to an individual without his/her consent and for the individual’s benefit … it is not automatically right to produce benefit for another without consent.46

A focus on cure rather than care was decried. Medical paternalism, it is argued, assumes that the medical good is the highest good, overriding all other values; it ‘subsumes all the patient’s good under only one good – the medical good’.47 Patients have values beyond the medical good, and these values could be just as important as, or indeed more important than, the medical good, and respect for the full range of values is an essential element of healing or caring. Furthermore, even the medical good is not constant, and doctors may have variable opinions and preferences among treatment options.

The patient should be free to decide what is best for him/herself based on adequate knowledge of the available treatment options. The doctor’s responsibility is to provide this information as clearly and as truthfully as possible, and to respect the choice of the patient whether or not this appears rational. Indeed, it has been argued that to violate a person’s self-determination ‘is not to heal, but to wound, his or her humanity’.48

Defence of Paternalism

While some reject the suggestion that there are any potential benefits of paternalism,49 others assert that:

The sick still generally come to their physicians for expertise and reassurance, not knowledge and power. They want to be fixed and reassured, not educated and forced to make decisions about matters with which they are quite unfamiliar.50

Defenders of paternalism also say that:

Failure to be paternalistic, in the proper sense of the word, deprives the patient and the family of real care in the time of their greatest need. Doctors have no need apologetically to defend paternalism.51

The qualifier (‘in the proper sense of the word’) is worth noting. To Shinebourne and Bush, the proper sense of the word is derived from the literal meaning: medical paternalism is simply the doctor acting like a father would to his children; but they also say that ‘medical condescension … is not implicit in the word paternalism’52 and that ‘[p]aternalism does not have to imply disrespect for autonomy’.53 Their definition of paternalism is different from the one adopted in this book (see above), which requires the doctor to act in the patient’s perceived best interests irrespective of whether this action contradicts the patient’s own wishes. Definitional problems account for incorrect statements such as saying that ‘the reaction of sick doctors can ironically be to prefer paternalism to personal autonomy’54 (meaning that when doctors are themselves ill, they want the doctors treating them to act paternalistically). Reading the original research work on which this statement is based,55 it becomes clear that what the sick doctors prefer to autonomy is beneficence, not paternalism; they want the treating doctors to make any decisions considered to be in their best interests but this is different from saying that they want this action irrespective of whether it contradicts their own wishes.

The position of the paternalist has been stated as follows:

Patients come to physicians to be healed (or at least, restored to function and relieved of suffering as much as possible). Given this over-riding agenda, the primacy of which both parties agree upon, anything that enhances healing is appropriate, anything that diminishes or undermines it is to be avoided. What enhances it seems quite clear: the trust that brings that patient in and generates acceptance, compliance, and cooperation with the physician’s recommendations. As to decision making, effective and appropriate management of illness dictates that this is the physician’s function, often there is a clear and primary treatment of choice and the patient comes to the physician to have this identified and provided.

There were other ways to enhance this process as well. Patients also came seeking reassurance, and the physician was loath not to provide it, even if he diverged from or stopped short of the truth. It was, and still is, a common belief among health care professionals that the more hopeful or optimistic patient does better therapeutically – responds better physiologically – than the more pessimistic, less hopeful patient. If strong reassurance enhances therapeutic response or, more specifically, if accentuating the positive and downplaying the negative is therapeutically efficacious, then it would be an abuse of the patient’s trust and best interests not to do it.

On this view, truth telling can be counter-therapeutic and the whole new ethos quite misguided. Even now, physicians who are consciously committed to patient autonomy routinely err on the side of emphasizing the benefits of treatment and the likelihood of success.56

One reason commonly cited for paternalistically withholding information from patients or misleading them is the fear that this information could induce anxiety in the patient. Higgs dismisses this attempt to justify paternalism:

… the argument that lies are justified to prevent anxiety carries its own rebuttal. The antidote to fear is not silence but open discussion … Were trust to decline so that patients did not believe what was being said to them, not only reassurance but also genuine support during an illness would become impossible … The presumption remains that competent people must be allowed to choose for themselves. If they do not have the information on which to base a choice, or even a realization that a choice is necessary at all, it seems hard not to see this in itself as a major harm.57

In a robust analysis, Allen Buchanan identifies and debunks three arguments advanced in support of doctors paternalistically withholding information from patients.58 The first of these arguments is the ‘Prevention of Harm Argument’. This argument posits that if giving the patient information X will do great harm to him/her, the doctor is obliged by the duty of care not to give the patient this information. Buchanan states that for this argument to be valid, the doctor must show that, on balance, giving information X will do greater harm to the patient than withholding the information will.59 Also the argument assumes that the patient will be successfully deceived and does not take account of the possible consequences (distress, distrust) of the patient suspecting or finding out that information has been withheld. A second argument is the ‘Contract Version of the Prevention of Harm Argument’. The argument here is that the terms of the contractual physician–patient relationship are such that the patient authorises the physician to minimise harm to the patient by whatever means the physician deems necessary. Leaving aside the contentious issue of whether the doctor–patient relationship can rightly be described as contractual, one counterpoint to this argument is that every contract has its boundaries or limits and if the patient does not have full information, how can he/she know that the limits of the contract are being respected by the doctor? The third argument is the ‘Argument from the Inability to Understand’ which is based on the premise that the physician is justified in withholding information when the patient is unable to understand the information. The question arises: what harm would the patient suffer if given information that he/she cannot understand? This question takes us back to the first argument dismissed above.

Strong and Weak Paternalism

In medical paternalism the doctor acts in line with what he/she considers to be the best interests of the patient, irrespective of whether this line of action contradicts the patient’s own wishes. Sometimes this paternalistic act arises when the patient is too young or has limited intelligence or education, or for other reasons is not in a position to appreciate the consequences of their choice. When these conditions prevail and the clinician intervenes to act in the best interests of the patient, this is referred to as limited or weak paternalism.60 Treatment delivered in an emergency situation is sometimes classified as weak paternalism, but I would argue that such treatment is not paternalism but beneficence.61 In such situations the doctor is not acting without regard for the patient’s preference.

In other situations the patient may suffer harm in the absence of the proposed medical intervention, and a clinician acting to protect the patient against their wish is manifesting ‘strong paternalism’.62 This form of paternalism has also been termed ‘best-interest paternalism’.63 In weak paternalism, the physician is disregarding a patient’s preference or action that is substantially non-autonomous. The subject of this book is the patient who is in a position to make decisions about his or her own treatment, so the focus is on strong rather than weak paternalism.

Beauchamp and Childress list the following conditions that justify strong paternalism:

1. A patient is at risk of a significant, preventable harm.

2. The paternalistic action will probably prevent the harm.

3. The projected benefits to the patient of the paternalistic action outweigh its risks to the patient.

The least autonomy-restrictive alternative that will secure the benefits and reduce the risks is adopted.64 These conditions point to the balance which the doctor has to make between his/her obligation to help and the requirement to respect the patient’s self-determination, but the authors appear to be suggesting that it is okay to assert or to respect the patient’s self-determination so long as the doctor does not foresee that this would result in significant harm to the patient – in other words, protect self-determination, but be paternalistic when you see that respecting the patient’s preference could harm the patient. This view is not different from the ‘Prevention of Harm Argument’ rebutted above. In addition to the counter-arguments made in respect of this argument, there is the issue of what actually constitutes harm to the patient. In Re C the doctors’ view was that the patient would be harmed if he did not agree to have his foot amputated.65 The patient’s own view was that he would be harmed (psychologically as well as physically) by having to live with one foot; he would rather die with two. Another (and less contentious) example is that of a patient who declines chemotherapy, preferring to die rather than suffer the side effects of the treatment.

Paternalism Distinguished from Beneficence

Paternalism is often described in terms that suggest it soothes the ego of power-hungry doctors and is intrinsically bad for the patient.66 On the other hand, doctors and their advocates sometimes justify paternalism on the basis of non-maleficence and beneficence,67 two of the four ethical principles enunciated by Beauchamp and Childress (the other two being autonomy and justice).68 The principle of beneficence requires that we take positive steps to help others. In some situations it becomes an obligation rather than a moral ideal. In medicine, it has always been taken that the obligation to help others is the core tenet of the profession – after all, the reason why people go to a doctor is to obtain help.

Here, it must be emphasised that beneficence is not synonymous with paternalism. Beneficence is the ethical requirement to act in the best interests of the patient whereas paternalism, as defined in this book, is acting in the perceived best interests of the patient irrespective of whether this line of action contradicts the patient’s own wishes. In other words, what distinguishes beneficence from paternalism is that the latter could entail acting in the absence of, or without reference to, the patient’s consent, or even against the patient’s wishes. Paternalism, by definition, entails infraction of self-determination; beneficence, on the contrary, includes respect for self-determination.

It must be stressed also that paternalism transcends the mere actions or practices of the health professional: Buchanan recognises this when he states that ‘what is at issue is a paradigm, a way of conceiving the physician-patient relationship’.69 This means that paternalism is a manifestation of the values and attitudes of the doctor, and therefore lies at the core of the doctor’s concept of professionalism.70

The same could be said of beneficence. Downie and Macnaughton assert that when doctors are ‘beneficent’ (seeking the best interests of their patients) it does not necessarily follow that they are upholding a moral good; rather, it is the values and attitudes (i.e. professionalism) that they bring into play that count:

Our argument can be put simply. What is the basic professional duty of the doctor? It is to treat patients according to their best medical interests. This is not the moral duty of beneficence; it is simply a job description. Or if you want to insist that it is the moral duty of beneficence then it is one to be found in most jobs. The ‘lollipop’ or road crossings lady helps the children to cross the road to school. That is her job description. Call it the moral duty of beneficence if you like. The garage mechanic mends your puncture. Call it beneficence if you like, but it is just part of what he does for a living. Aristotle maintains that all actions aim at some good, but he doesn’t mean a moral good. The ‘good’ at which all actions aim is just the point of the action. In the case of medicine that point is the best medical interests of the patient. To pursue that aim does not put you in the ranks of the saints and martyrs, or even of the moderately morally good; it is just what you do for a living. Moral assessment applies to how doctors do their jobs, not to the bare fact that that is the job they do.

The significance of this argument, if it is accepted, is considerable. It has been a rarely questioned assumption that doctors, in pursuing the best interests of their patients or in acting towards them in a beneficent manner are showing morally good or indeed altruistic or supererogatory moral qualities. Yet every working person from the waitress to the bus driver might with as much justification claim that they aim at the best interests of whatever or whoever is the object of their activity. Why then should doctors make such a fuss about it, and claim a halo? The answer to this is complex … at least part of the answer is the belief that medicine is a profession and professions have ethical characteristics which are lacking in trades, industries and business.71

Professionalism, the framework of values and behaviour that defines the relationship between doctors and patients, will be a key factor in the implementation of any new model which aims to enhance patients’ involvement in health-care decision-making. Referring to the model of clinical practice in which treatment is given only with the consent of patients and they are not treated paternalistically, O’Neill said:

This revised model of doctor–patient interaction demands more than a simple change of attitude on the part of doctors, or of patients. It also requires huge changes in the terms and conditions of medical practice and ways of ensuring that treatment is given only where patients have consented.72

The issue of professionalism is revisited in Chapter 8, as it is an important element in the proposed property model for protection of patient self-determination.

Socio-political Currents that have Induced or Accelerated the Kick against Medical Paternalism

In the last two decades there has been a progressive retreat from medical paternalism. The socio-political currents that induced or augmented this retreat include the ascendency of rights thinking, higher levels of public awareness and education, advances in science and technology, and public knowledge of the fallibility of doctors.

The Ascendancy of Rights Thinking; Consumerism

Perhaps the most powerful factor in the progressive subjugation of paternalism is the ascendancy of rights thinking in today’s world. The doctrine of human rights has its origins in the philosophy that individuals hold certain rights simply because they are individual human beings.73 Self-determination is closely linked with natural rights; indeed, self-determination can be regarded as a foundational natural right. As Madhok recounts:

… it is often held that the object of human rights is to enhance the autonomy of the individual through safeguarding the security, liberty and political rights of persons.74

The concept of natural rights, entitlements possessed by individuals that others are constrained to acknowledge and respect, has been in existence for centuries but gained formal recognition when the Universal Declaration of Human Rights was adopted by the United Nations in 1948.75 Human rights, descendants of natural rights, have increasingly become key elements of legal and political systems. Issues such as access to health care, distribution of health resources and protection of reproductive health rights are commonly framed in human rights terms. In the United Kingdom, this development reached its apotheosis with the enactment of the Human Rights Act in 1998.76

The raison d’être of human rights is the prevention of abuse of power.77 It is, therefore, not surprising that claims relating to self-determination and related issues are commonly couched in the language of rights. As observed by Jones:

Claiming or asserting rights has become the common mode by which people seek to promote an interest or advance a cause. That is to be explained, in part, by the special force possessed by the language of rights. If we are concerned that people should be able to speak freely, or to choose their own careers, or to vote, or to marry the person of their choice, or to have an abortion, or to hunt animals, or to determine their own lifestyle, or to work, or to strike, or not to suffer discrimination, or to receive medical treatment, or not to receive medical treatment, or to live, or to die, it is much more forceful to say that people have rights to do all of those things than to say merely that it is desirable or good that they should be able to do them. In coming to think of these things as rights, we shift them out of the realm of the merely desirable and into the domain of the morally essential.78

Arguably, property analysis also shifts its subject matter from the realms of the desirable to the domain of the legally essential – society tends to ascribe property to that which is highly prized and which is central to one’s life as an independent person.

Rights thinking in the health-care sector is manifested in the American Hospital Association’s 1972 publication A Patient’s Bill of Rights,79 which (among other rights) affirmed the patient’s right to be given information and to give meaningful consent before treatment, and the UK government publication The Patient’s Charter,80 which set standards of care for National Health Service (NHS) hospitals.

The ascendancy of rights thinking has had an impact on judicial thinking. In the past it was assumed that under the English common law, a man could not be guilty of raping his wife, but in R v. R the House of Lords held that a woman had the right to give or withhold consent to sexual intercourse with her husband.81 In R v. D, the House of Lords ruled that the position of paramountcy in the family accorded the father, which previously afforded him a lawful excuse for forcibly taking away his unmarried child, had been overtaken by social currents which exalted the child’s consent.82 Similarly, a mother’s traditional role in determining what treatment her child would have was over-ridden in Gillick v. West Norfolk and Wisbech Area Health Authority

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