asset or burden? informed consent and the role of the family: law and practice

Asset or burden? Informed consent andthe role of the family: law and practicelest_223 525..550

Roy Gilbar*Senior Lecturer, School of Law, University of Leicester

The paper discusses the issue of family involvement in the process of obtaining consent totreatment. Legally, doctors have a duty to inform the patient, and the patient has a right tobe informed before making a decision. In this context, however, there is no requirementto involve relatives or to take into account their interests or requests. Yet, findings fromin-depth interviews with NHS general practitioners presented in the paper indicate that inreality relatives have a substantial impact on the process of informed consent. Theirpresence may lead the doctor to provide more information to the patient and help thepatient better understand the information conveyed by the doctor. Ultimately, the relatives’involvement enhances the patient’s ability to make an informed decision, even though insome cases – when the relative is dominant – this may have a negative impact on thechannel of communication between doctor and patient. These findings reflect a relationalapproach to patient autonomy. They lead the author to suggest that the current doctor-patient partnership model in English medical law would benefit by the addition of relativesas an integral component of the decision making team. Such a significant shift in the legalapproach requires changes in the type of information conveyed by the doctor to thepatient; in the means to increase the patient’s understanding; and lastly at the point whendecisions are actually made.

INTRODUCTION

It is accepted that an adult patient who makes an autonomous decision about medicaltreatment must have the mental capacity to do so, must be free from undue influenceby others, and must receive relevant information before making the decision.1

However, individual patients generally do not make decisions about treatment inisolation; they have a social network of relatives and close friends who have an inputwhen decisions are made. Therefore, there is a familial aspect to each of the abovethree components of competence, independence and information.2 Regarding compe-tence, relatives are approached by clinicians who need to determine the mental

* This study could not have been conducted without a grant received from the NuffieldFoundation, reference NCF/32362; the academic supervision of Prof Andy Alaszewski and MsKirstie Coxon of the University of Kent; and the input of all the clinicians who agreed to let mehear their accounts.1. T Beauchamp and J Childress Principles of Medical Ethics (New York: OUP, 6th edn,2009).2. ‘Family’ in this paper is not limited to blood relations or legal ties such as marriage oradoption. A relative may be the person with whom the patient feels emotionally close. For adetailed discussion, see R Gilbar The Status of the Family in Law and Bioethics: The GeneticContext (Aldershot: Ashgate, 2005) ch 2.

Legal Studies, Vol. 32 No. 4, December 2012, pp. 525–550DOI: 10.1111/j.1748-121X.2011.00223.x

© 2012 The Author. Legal Studies © 2012 The Society of Legal Scholars. Published by Blackwell Publishing, 9600Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

capacity of the patient when it is in doubt.3 Regarding independence, relatives oftenhave their own views about the proposed treatment and these views can be influentialwhen decisions are made.4

In a previous paper I examined the relationship between patients’ independenceand family involvement.5 Relying on interviews with patients who suffer from long-term illness, as well as interviews with their relatives, I argued that whereas the lawtreats family influence on patients’ decisions with hostility, patients themselves valuetheir relatives’ input highly. It was found that patients discuss treatment decisions withtheir relatives and take the relatives’ views into consideration. It was also found thatalthough most patients are aware that they have the final word when making decisions,they find it difficult to make decisions without their relatives’ support and involve-ment. The conclusion reached in the previous paper was that a relational approach toautonomy reflects the experience of patients and relatives. It was thus suggested thatEnglish law and the relevant GMC guidelines ought not express resentment regardingfamily influence but rather encourage clinicians to involve the relatives when patientsmake decisions. The conclusion was that family influence does not, in most cases,undermine the patient’s independence but rather enhances it.

The present paper examines the other component of patient autonomy, namely thatof the provision of information and the impact that family involvement has in thiscontext. This examination will provide a different perspective to the one in theprevious paper on the issue of family involvement in the medical decision makingprocess, and will lead to an expanded account regarding the required changes in lawand professional ethics guidelines.

1. COMMUNICATION AND THE DUTY TO INFORM THE PATIENT

The communication of information is the essence of the doctor-patient relationship.6

It is a process, and not a one-off event. In any medical consultation, the doctor and thepatient exchange information, conduct discussions over it and ultimately make adecision.7 Moreover, when patients are diagnosed with a long-term disease, they faceseveral decisions, such as where to be treated and what type of procedure to have.Each of these decisions involves a process of communication, yet its scope anddynamics vary. In principle, the doctor provides the relevant medical information andadvice and the patient is encouraged to express his/her preferences and concerns.8

However, this may not be the case in all consultations. In some cases, patients mayexpress a wish not to know everything, or may delegate the authority to make adecision to someone else, either the treating doctor or a close relative.

3. I will analyse family involvement when patients lose their mental capacity in a subsequentpaper.4. Re T (adult: refusal of medical treatment) [1992] 4 All ER 649.5. R Gilbar ‘Family involvement, independence and patient autonomy in practice’ (2011) 19(2) Med L Rev 192.6. D Roter and J Hall Doctors Talking with Patients/Patients Talking with Doctors(Westport, CT: Praeger, 2nd edn, 2006).7. C Charles et al ‘Shared decision-making in the medical encounter: what does it mean(or it takes at least two to Tango)’ (1997) 44 (5) Social Science & Medicine 681.8. T Rapely ‘Distributed decision making: the anatomy of decisions in-action’ (2008) 30 (3)Sociology of Health & Illness 429.

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© 2012 The AuthorLegal Studies © 2012 The Society of Legal Scholars

This process of the exchange of information between doctors and patients istranslated in law into a doctor’s duty to obtain consent to treatment. The clinician islegally required to inform the patient about his/her diagnosis and prognosis, and todiscuss the available treatment options, risks, success rates, benefits and side effectswith him/her.9 The aim is to enable patients to make informed decisions.10

The process of obtaining consent to treatment is the focus of this paper and will beexamined from the perspective of family involvement. The legal position will beanalysed in light of findings from interviews conducted with a group of generalpractitioners in England between 2009 and 2010.11 The GPs highlighted the commu-nication process with patients and relatives. Their accounts provide a valuable con-tribution to the scholarly debate about informed consent. Based on the findingspresented below, I will argue that (1) in practice, relatives influence patients’ ability toprovide consent and to make decisions about treatment; (2) the law does not fullyrecognise this influence; and (3) the law should certainly recognise it.

Based on these arguments, the structure of the paper is as follows: a theoreticaldiscussion about family involvement in the process of obtaining consent for treatmentwill be conducted. This will enable a critical examination of the current legal positionon the subject. The legal discussion will then be followed by a review of previousempirical studies conducted in this area. Next, the methods used in the study, thefindings, and an analysis of the findings will be presented. The paper will end with anappeal to reconsider the current legal position.

2. THE CURRENT DEBATE ABOUT INFORMED CONSENT

The theoretical discussion about family involvement in the decision making process isconducted as part of the individual-relational debate over patient autonomy.12

Recently, there has been a shift in the scholarly discussion about autonomy from anindividual to a relational approach.13 Notably, the discussion about family involvementfocuses more on the element of the patient’s independence and less on the provisionof information.14 As we shall see below, relational accounts about the provision of

9. Clinicians are hospital doctors, GPs, nurses, psychiatrists, psychologists and occupationaltherapists.10. E Jackson Medical Law: Text, Cases and Materials (Oxford: OUP, 2nd edn, 2010) ch 4.11. The focus in this paper is on general practitioners, due to the familial approach underlyingtheir medical speciality. However, whether their attitude to family involvement is significantlydifferent from the attitude of clinicians in other specialties is not examined. This must awaitempirical research.12. Individual autonomy means that patients act autonomously when they have the mentalcapacity to make decisions without the controlling influences of others. See Beauchamp andChildress, above n 1, p 132.13. At the heart of relational autonomy is the notion that significant others have an influenceon, and are influenced by, the decisions made by the individual, since the individual is first andforemost a social being with an important network of people with whom s/he has a closerelationship, forming part of his/her identity. For a comprehensive account, see Gilbar, aboven 5, pt 3(b).14. In the context of patients’ independence, Hardwig believes that relatives should have anequal say when important decisions about treatment are made. See J Hardwig ‘What about thefamily?’ (1990) 20 Hastings Center Report 5. Others, such as Hilde and James Lindemann-Nelson, believe that ultimately patients’ interests should be preferred when they conflict with

Asset or burden? Informed consent and the role of the family 527


information generally focus on the dyadic doctor-patient relationship and do notaddress the family.

As stated above, the process of communicating with the patient is viewed in law asthe process of informed consent. Since the discussion about informed consent in lawand bioethics is voluminous, and cannot be covered in its entirety, I will refer in thissection mainly to the recent and influential accounts on the subject in English law, andwill examine their approach to family involvement.

Beauchamp and Childress define the process of providing informed consent totreatment as including three main components: disclosure of information, understand-ing the information, and consent to – or authorisation of – the proposed treatment.15

In this section I will address the first two components, which ultimately leads to adiscussion of the third component in subsequent sections.

(a) Disclosure

A large part of the scholarly discourse over informed consent focuses on disclosure ofinformation.16 The literature is influenced by the ongoing debate in the English courts(discussed in the next section) about the scope of disclosure to patients. One of thecentral issues is the level or rate of the risk the doctor should communicate to thepatient so that the patient’s consent will be informed and lawful. Thus, the focus ofthe scholarly discourse is the content of the information which should be conveyed tothe patient.

In this context, there is agreement that the level of disclosure should not be basedon professional medical judgment only (also known as the reasonable doctor test), oron a reasonable patient test which requires the clinicians to communicate informationwhich any reasonable patient would want to receive, but to require as well that theclinician be attentive to the requests and needs of the particular patient.17

Manson and O’Neill argue that the focus on the content of the information isproblematic. They stress that the information communicated to the patient ‘willdepend upon the context’. They state that the particular act of informing depends upon‘what people want to do, and upon what they are capable of doing’.18 In this respectthey add that simply absorbing the information is not enough. Positive acts which willstrengthen the level of understanding are also required. Information, they conclude, ‘isnot context-independent “stuff” that flows from person to person’.19 They thusacknowledge that social circumstances determine the process of informed consent.

those of the relatives. See H Lindemann-Nelson and J Lindemann-Nelson The Patient in theFamily (New York: Routledge, 1995). See also A Ho ‘Relational autonomy or undue pressure?Family’s role in medical decision making’ (2008) 22 Scandinavian Journal of Caring Sciences128; A Donchin ‘Autonomy and interdependence: quandaries in genetic decision making’ inC Mackenzie and N Stoljar Relational Autonomy: Feminist Perspectives on Autonomy, Agencyand the Social Self (Oxford: OUP, 2000) p 236.15. See Beauchamp and Childress, above n 1, pp 118–121.16. D Lock ‘Consent to treatment: the competent patient’ in A Grubb, J Laing and J McHale(eds) Principles of Medical Law (Oxford: OUP, 3rd edn, 2010) pp 439–472; J Herring MedicalLaw and Ethics (Oxford: OUP, 3rd edn, 2010) pp 164–167.17. S McLean Autonomy, Consent and the Law (Oxon: Routledge-Cavendish, 2010).18. N Manson and O O’Neill Rethinking Informed Consent in Bioethics (Cambridge: CUP,2007) p 41.19. Ibid, and also at pp 47–48.



(b) Understanding

Drawing on this critique, merely providing information to the patient is not sufficient.Part of the doctor’s duty is to ensure at least a certain degree of understanding.Otherwise, as Mason and Laurie argue, the ethical basis of informed consent isundermined.20 Beauchamp and Childress agree. They admit that due to the emotionalimpact of the diagnosis, patients might never be fully informed. Yet, they argue thatlegally patients are ‘adequately’ informed if they understand the central facts.21

Adopting a relational approach to autonomy, Maclean highlights the positiveobligation imposed on clinicians to support and facilitate the patient’s autonomy.22 Tocarry this out, Maclean argues, the clinician and the patient must embark upon aprocess of negotiation and deliberation. In this process the patient will state his/herinformational needs and understanding of the information. The clinician will then beable to respond to the questions the patient has and to ‘assess how well the patient hasunderstood the information’ conveyed.23

(c) Informed consent as a shared decision making process

Maclean thus promotes a model of partnership between the patient and the clinician toattain informed consent. His view is shared by other leading scholars.24 It reflects themodel of shared decision making developed by sociologists in healthcare.25

Yet, in contrast to the socio-medical model of shared decision making whichrecognises the role of the relatives,26 relational accounts of informed consent inEnglish law barely mention the family. Although there is agreement among bioethi-cists who promote relational approaches to informed consent that the decision makingprocess should take into account not only the patient’s personal goals and values butalso his/her obligations to close relatives,27 the relatives do not have an independentrole. They are not viewed as part of the decision making team. For example, whenMaclean discusses the means to promote the patient’s understanding, he does notaddress the relatives who, in many cases, are present in the consultation and help thepatient absorb and process the information communicated by the clinician.28 Yet, thefindings presented below show that the relatives are actively involved in the process ofcommunication between the clinician and the patient and that this involvement has animpact on the patient’s consent and decisions.

(d) Intentional non-disclosure

Another aspect of family involvement in the process of informed consent is in thecontext of intentional non-disclosure. In some cases patients may express an interest

20. JK Mason and JT Laurie Law and Medical Ethics (Oxford: OUP, 8th edn, 2011) p 110.21. See Beauchamp and Childress, above n 1, p 127.22. A Maclean Autonomy, Informed Consent and Medical Law: A Relational Challenge(Cambridge: CUP, 2009) p 232.23. Ibid, p 244.24. Mason and Laurie, above n 20, p 111.25. A Edwards and G Elwyn (eds) Shared Decision Making in Health Care (Oxford: OUP,2nd edn, 2009).26. See Charles, above n 7.27. See Maclean, above n 22, p 247; McLean, above n 17, pp 63–64.28. See Maclean, above n 22, p 243.



not to know. However, it seems that the interest in non-disclosure is not fully recog-nised. Maclean emphasises that the patient should have the authority to control theflow of information communicated to him/her,29 but he also argues that the patientmust be given sufficient information to know that there is a decision to be made. Thismay require the clinician to notify the patient that he/she has a serious disease whichrequires treatment and major decisions. Hence, it seems that the patient cannotentirely waive his/her right to be informed. Basic information about the condition willbe communicated to the patient whether she/he wants it or not. This position derivesfrom the view that the patient is vulnerable and should be protected when she/heenters the healthcare system.30

The family has an impact in this context as well. As the accounts given by thestudy’s respondents show, some relatives express their concern that informing thepatient will have a devastating effect on him/her. Hence, in some cases relatives askthe clinician not to tell the patient the truth about his/her condition.31 Notably, thisissue of familial impact on the patient’s ability to control the flow of informationcommunicated to him/her by the clinician is barely addressed in the theoreticalaccounts of informed consent, while those who do address this issue reject therelatives’ request and warn that it is dangerous.32 In practice, however, this issue is notstraightforward, as we shall see below.

Intentional non-disclosure is also related to the clinicians’ discretion to determinethe scope of disclosure to the patient. The term therapeutic privilege is employed inthis context. It suggests that clinicians may decide not to inform the patient when theybelieve, based on their professional view, that disclosure will cause the patient moreharm than good.33 Thus, when relatives suggest that the patient may be distressed bybad news, the clinician may adopt their view and form a professional opinion that thepatient should not be informed.

However, there is agreement that therapeutic privilege should be applied nar-rowly, in a way which does not compromise the patient’s autonomy. Beauchampand Childress argue that a clinician can apply this privilege only if she/he believesprofessionally that ‘disclosure would render the patient incompetent to consent toor refuse treatment’.34 Maclean argues that therapeutic privilege is an unjustifiedexception because ‘it is hypocritical’ to declare that patients can make any deci-sion they want and then deny them the very information necessary to make thedecision.35

Ultimately, the conclusion following the discussion about intentional non-disclosure (whether it is initiated by the patient, the clinician or the family) points toevident agreement that consent to treatment can be autonomous only if basic infor-mation about the illness is conveyed to the patient. It is therefore understandable that

29. Ibid.30. See Beauchamp and Childress, above n 1, p 132.31. For an inclusive discussion about truth-telling, see ibid, pp 288–294.32. Ibid, p 293, and also M Kuczewski and P McCruden ‘Informed consent: Does it take avillage? The problem of culture and truth telling’ (2001) 10 Cambridge Quarterly of HealthcareEthics 34.33. Harm to the patient may include making irrational decisions which endanger his/her life,and experiencing depression, anxiety or distress.34. See Beauchamp and Childress, above n 1, p 124; also McLean, above n 17, pp 84–86.35. See Maclean, above n 22, p 206.



health sociologists express the view that patients have a duty to know,36 and that therelatives’ requests not to inform the patient are rejected.

To sum up the discussion in this section, the current discourse on informed consenthas moved from a detached, context-free, content-based approach to an interpersonal,context-dependent, relational approach. We have arrived at a point where legal schol-ars and bioethicists adopt and advocate a shared decision making model which wasoriginally developed in the fields of social science and healthcare.37 Yet, what seemsto be absent from these recent legal and bioethical accounts on informed consent is acomprehensive investigation of family involvement. In this respect, the scholarlydebate about informed consent focuses on the interpersonal relationship between theindividual patient and the clinician. There is hardly any recognition that the patient’sgoals and values derive from, and are positively influenced by, the family.38 Thediscussion, when it addresses relatives, positions their interests essentially againstthose of the patient and ultimately grants the patient an overriding preference.39 Doesthis reflect the legal position? This question will be discussed next.

3. THE RIGHT TO MAKE INFORMED DECISIONS

(a) Case-law

(i) disclosure

Legally, clinicians have a duty to inform the patient about the available treatmentoptions, and the patient has a right to choose from them.40 The courts focus on thecontent of the information rather than on the patient’s ability to understand it. Theessence of the leading cases in this area is whether a particular piece of information(usually concerning the inherent risks in the proposed treatment) should have beendisclosed to the patient, and whether the clinician is legally negligent as a result.41

Following a series of significant decisions in the House of Lords over the last 25 years,the scope of information disclosed to the patient at present is not determined by theprofessional standard of doctors, nor is it determined by the personal needs andrequests of the particular patient. Rather, the clinician must convey information whicha reasonable patient would want to receive.42 As McLean argues, this cannot satisfy

36. M Murtagh ‘Decision-making, power, and the doctor-patient relationship’ in Edwards andElwyn, above n 25, pp 79–84.37. M Clayman and G Makoul ‘Conceptual variation and iteration in shared decision-making:the need for clarity’ in Edwards and Elwyn, above n 25, pp 109–116.38. One exception is the recent account provided by S Mclean, above n 17, who attempts toreconcile the individual and relational approach to autonomy and consent.39. M Kuczewski ‘Reconceiving the family: the process of consent in medical decisionmak-ing’ (1996) 26 (2) Hastings Center Report 30.40. J Coggon ‘Varied and principled understandings of autonomy in English law: justifiableinconsistency or blinkered moralism’ (2007) 15 Health Care Analysis 235.41. Sidaway v Board of Governors of the Bethlem Royal Hospital [1985] AC 871; Pearce vUnited Bristol Healthcare NHS Trust [1999] PIQR 53; and to a certain degree Chester v Afshar[2004] UKHL 41.42. See Pearce, ibid.



either proponents of a liberal-individualistic approach or supporters of a relationalapproach.43

(ii) understanding

The issue of the patient’s understanding is not discussed extensively by the courts.It was dealt with in Smith v Tunbridge Wells Health Authority, where Morland Jstated that a doctor ‘should use language, simple but not misleading, which . . . willbe understood by the patient’.44 Notably, giving patients leaflets, which provideclear information about the proposed treatment, may well be sufficient.45 In short,the clinician must take steps to help the patient understand to what she/he is con-senting. The clinician does not need to make sure that the information has beenunderstood.46

(iii) the family in the courts

Nowhere in this process of communicating information and ensuring understandingis the family mentioned. The focus is on medical information and not on socialor familial factors. An exception is found in Lord Scarman’s speech in Sidaway,where he stated that:

‘the doctor’s duty can be seen . . . to be one which requires him not only toadvise as to medical treatment but also to provide his patient with the informationneeded to enable the patient to consider and balance the medical advantages andrisks alongside other relevant matters, such as, for example, his family . . . or socialresponsibilities of which the doctor may be only partially, if at all, informed’.47

Lord Scarman is aware of the relational aspect of the doctor-patient relationship.48

He enables each party to bring its own expertise to the consultation room. However,although Lord Scarman’s approach reflects progress in the judicial attitude to theprocess of informed consent, it is still not sufficiently comprehensive from a familialperspective. The doctor’s duty to provide information is still directed to the patientalone, and consideration of the relatives’ interests is dependent on him/her. In addi-tion, the courts do not explicitly recognise the independent role of the relatives whenthe patient receives medical information from the clinician. The assistance providedby the relatives to the patient in processing the information, understanding it, andultimately making decisions is not addressed. The relatives are not an integral part ofthe process of informed consent.

43. See McLean, above n 17, pp 96–97.44. [1994] 5 Medical Law Report 334. It was held that patients must understand ‘in broadterms the nature of the procedure which is intended’.45. Al Hamwi v Johnston [2005] EWHC 206.46. Ibid. For a critique, see J Miola Medical Ethics and Medical Law: A Symbiotic Relation-ship (Oxford: Hart, 2007) pp 70–72.47. See Sidaway, above n 41, pp 885–886.48. A similar view was expressed by Lord Hope in Chester v Afshar [2004] UKHL 41, para86.



(b) Professional guidelines

An examination of the influential professional guidelines on consent published by theGeneral Medical Council (GMC) reveals that the family is hardly addressed. Theguidelines explicitly advocate a partnership model, which is similar to the shareddecision making model discussed above, and is based on the individual patient and theclinician.49 Although the guidelines aim to protect the interests of the particular patient(and not the reasonable patient, as currently suggested by the courts), they still ignorethe important role of the relatives in the process of communication of information inthe consultation room.

The attitude to relatives is evident in para 22, located in a different section of theguidelines – a placement which a priori suggests that relatives are not inherentlyinvolved in the process. Moreover, the section states: ‘You should accommodate apatient’s wishes if they want another person, such as a relative . . . to be involved indiscussions or to help them make decisions’. The inherent assumption here is thatinvolving relatives requires clinicians to change their routine one-on-one method ofinteracting with the individual patient.

A more negative attitude to the patient’s relatives in the process of obtainingconsent appears in the guidelines in the discussion of the option of intentionalnon-disclosure. Since the provision of information is essential to fulfil the doctor’sduty to obtain consent to treatment, the option of not communicating information tothe patient is virtually nonexistent.50 Moreover, a relative’s request not to convey badnews to the patient is explicitly rejected.51 Thus, the possibility that the patient and thefamily share a different approach to disclosure of information from that of the medicalprofession, and the fact that in many cases the family knows the patient better than theclinician, is not explicitly recognised. The guidelines thus reflect an exclusionaryperception of autonomy: the patient must be informed to make decisions and therelatives cannot interfere with this.52

Ultimately, therefore, family involvement is limited when the patient faces adecision. The guidelines indicate that the individual patient is the ultimate decisionmaker, and they call on clinicians to monitor whether family involvement amounts toundue influence.53 Patients who wish to delegate decision making authority to rela-tives are viewed as exceptional, and the clinician must explain to the patients that it isstill important that they understand the options available to them.54

In the context of this study, which presents GPs’ views, the question is whethertheir particular professional guidelines reflect a more relational approach. Notably,

49. General Medical Council Consent: Doctors and Patients Making Decisions Together(London: General Medical Council, 2008).50. Ibid. Para 14 reads: ‘If, after discussion, a patient still does not want to know indetail about their condition or the treatment, you should respect their wishes, as far as possible.But you must still give them the information they need in order to give their consent to aproposed investigation or treatment’. See also para 15: ‘If a patient insists that they do not wanteven this basic information, you must explain the potential consequences of them not having it,particularly if it might mean that their consent is not valid’.51. See GMC on consent, above n 49, para 16.52. However, doctors can apply their professional discretion and not inform the patient if theybelieve it will cause the patient harm. See Sidaway, above n 41, pp 889–890.53. See GMC, above n 49, paras 41–42.54. Ibid, para 13.



GPs are trained to work within a system-based approach where the family is aninherent part of their practice.55 Yet, the guidance published by the Royal College ofGeneral Practitioners (RCGP) does not recognise this. The approach is patient-centred: the professional duties of the GP are directed to the individual patient and thefamily is barely mentioned. GPs are guided to ‘be considerate to relatives, carers,partners and others close to the patient’,56 but they are also directed to preserve patientconfidentiality, which suggests that the clinician’s relationship with the relativesdepends on the patient.

Furthermore, when the patient does not speak English, a sense of hostility isconveyed to relatives. The RCGP guidelines direct the GP to arrange for a professionalinterpreter for such a patient so that the GP will not have to rely on relatives for thispurpose. The guidelines state that relying on the patient’s relatives in this context‘pays insufficient regard to the patient’s dignity and his or her right to confidentiality’.The message is thus clear: clinicians are cautioned against relying on relatives whoassist the patient by attending consultations for interpretive purposes.57

To conclude, English law and professional guidelines do not generally include thefamily in the decision making process. A Department of Health guide to relativesstates that relatives’ disagreement with medical decisions is irrelevant so long as thepatient is legally competent to make decisions.58 Thus, the position expressed byHardwig that relatives should have a say in the decision making process equal to thatof patients is not accepted.59 Similarly, the position advocated by the Lindemann-Nelsons, who perceive relatives as a source of support in decision making, is also notfully recognised.60 In light of this, the issue that follows is whether this positionreflects the views held by clinicians in practice, and especially by GPs who treatpatients in a familial context.61 To investigate this, we must first review the existingempirical data on family involvement in medical decision making.

4. EMPIRICAL EVIDENCE ON FAMILY INVOLVEMENT INDECISION MAKING

Researchers acknowledge that family involvement in the medical decision makingprocess has hardly been studied.62 The limited research on this subject concentrates onpatients’ and relatives’ views but not on clinicians’ attitudes.

55. W Doherty and M Baird ‘Developmental levels in family-centred medical care’ (1983) 18(3) Family Medicine 153; I McWhinney A Textbook of Family Medicine (Oxford: OUP, 2ndedn, 1997).56. Royal College of General Practioners Good Medical Practice (London: Royal College ofGeneral Practitioners, 2008) para 29.57. Arguably, the RCGP merely directs the GPs to consider other alternatives and not rely tooheavily on family members. However, the RCGP’s assumption is that reliance on familymembers may challenge the patient’s right to dignity and privacy, an assumption which mightnot be shared by the patients themselves, who may welcome the relatives’ assistance.58. Department of Health Consent – What You Have a Right to Expect: A Guide for Relativesand Carers (London: DoH, 2001); Department of Health, Consent – What You Have a Right toExpect: A Guide for Adults (London: DoH, 2001).59. See Hardwig, above n 14.60. See the Lindemann-Nelsons, above n 14.61. See McWhinney, above n 55, p 235.62. See Clayman and Makoul, above n 37.



In the context of long-term illnesses,63 relatives were found to undertake thefollowing roles in the decision making process: gathering and reviewing information;encouraging the patient to ask questions; being an active listener; actively askingquestions; advising the patient when s/he has to make a decision; deciding with thepatient; advocating on the patient’s behalf when talking to clinicians; and supportingthe patient’s decision.64 In addition, four types of family involvement were identified:creating a safe place for the patient to make a decision; forming a team with the patientand making decisions collaboratively; prompting the patient towards a decision; andmaking the decision for the patient.65 This indicates that relatives play an importantrole in the decision making process and that their input is varied.

(a) Clinicians’ views66

Only a limited number of studies have examined clinicians’ views and experiencesabout family involvement in decision making. GPs’ attitudes to family involvementwere found in one study only.67 The 17 GPs who participated in that study perceivedthe relatives’ role primarily as a means to help the patient, though also as a problemif they threatened the patient’s autonomy when the GP was anxious to preserve it.

In a study of cancer care, clinicians acknowledged the significant influence rela-tives have on the patient’s choice of treatment, and expressed a preference that therelatives be involved in the decision making process from the beginning so that allinformation is heard by those who have an influence on the decision.68 The cliniciansin that study also pointed out that family involvement has some disadvantages,especially when patients want to conceal information from relatives, or vice versa.Ultimately, the clinicians felt that they should respect the patient’s wish over that ofthe relatives. They suggested asking the patient in advance how much information s/hewants the family to know. These findings led the researchers to recommend thatclinicians talk openly with their patients about how to include relatives in theirtreatment decisions – recommendations that reflect a modified model of autonomy inwhich both individual and relational conceptions are recognised. The patient remainsthe ultimate decision maker, the relatives are involved and can voice their views, anddisagreements are in most cases resolved openly.

In another study, 12 oncologists reported that relatives were often present inconsultations and that their conduct varied: some dominated the consultations, whileothers acted more passively and only took notes.69 The clinicians also reported thatcoalitions were visible and that sometimes patients and relatives had different

63. Almost all the empirical studies presented in this part deal with long-term illnesses(mainly cancer).64. See Charles, above n 7, p 685.65. J Ohlen ‘The influence of significant others in complementary and alternative medicinedecisions by cancer patients’ (2006) 63 Social Science & Medicine 1625.66. The findings in this paper derive from interviews with clinicians. Therefore, I will presentprevious studies which examined clinicians’ views.67. PD Toon and LJ Southgate ‘The doctor, the patient and the relative: an exploratory surveyof doctor-relative relationship’ (1987) 4 (3) Family Practice 207.68. J Speice et al ‘Involving family members in cancer care: focus group considerations ofpatients and oncological providers’ (2000) 9 Psycho-Oncology 101.69. A Beisecker and P Moore ‘Oncologists’ perceptions of the effects of cancer patients’companions on physician-patient interactions’ (1994) 12 Journal of Psychosocial Oncology 23.



agendas. In the context of elderly patients,70 an analysis of 40 recorded medicalencounters with a doctor, a patient and a relative indicated that elderly patientsstruggle to voice their views and wishes, partly due to the clinicians’ tendency tocommunicate directly with the relatives when they are present. However, in someconsultations the attending relative tried to help the patient voice their views andpreferences when making decisions. The data also showed that patients relied on therelatives to communicate their wishes to the clinician and make decisions. The studydemonstrates that patients feel less autonomous and in control when coalitions areformed between the clinician and the relatives, supporting the view of writers whoargue that the individual perception of patient autonomy should not be rejected.71

(b) Truth-telling

The debate over relatives’ requests not to tell patients the truth about their illness isdominated largely by the cultural and ethnic background of the patient. Based on theirknowledge of the doctor-patient-family relationship and the empirical work of others,Aslam and his colleagues argue that relatives of Pakistani patients try to protect themfrom stress by withholding information from them. They explain that the ‘concept ofindividual autonomy that is so elementary in the West is challenged in the East’.72

Candib adds that ‘in cultures where the family is the unit of identity and responsibility,interdependence is the higher value, not individualism’.73

Indeed, medical educators are aware that cultural differences might lead to tensionin the doctor-patient-family relationship over telling the patient the truth about theircondition. McCabe and her colleagues suggest that clinicians should take an incre-mental approach to dealing with requests by relatives for non-disclosure and refrainfrom applying the Western approach to patient autonomy automatically. Yet, McCabeet al remain committed to a patient-centred approach in stating that ‘it is the patientand not the physician or the family who ultimately owns the right to decide how he orshe wants to exercise autonomy with respect to his or her own illness’.74

Baider and Surbone, too, doubt whether concealing information from terminally illpatients is purely wrong:

‘By honoring a family’s request not to tell the medical truth, do oncologistsdeviate from the ethical and professional standards of cancer care? Do they becomeaccomplices in keeping secrets, or is it, perhaps, part of their professional respon-sibility to establish a sense of empathic solidarity with patients and their families?’

The two oncologists observe that a family’s request not to inform the patient:

70. B Hasselkus ‘Three-track care: older patient, family member, and physician in the medicalvisit’ (1994) 8(3) Journal of Aging Studies 292.71. See McLean, above n 17, p 34.72. F Aslam, O Aftab and N Janjua ‘Medical decision making: the family-doctor-patient triad’(2005) 2 (6) PLoS Medicine e129.73. L Candib ‘Truth telling and advance planning at the end of life: problems with autonomyin a multicultural world’ (2002) 20 Families, Systems & Health 213. See also J Launer‘Breaking bad news’ (2005) 98 (5) QJM: An International Journal of Medicine 385, for a viewexpressing doubt as to whether telling the patients the truth is always the right thing to do.74. M McCabe, W Wood and R Goldberg ‘When the family requests withholding the diag-nosis: who owns the truth?’ (2010) 6 (2) Journal of Oncology Practice 94.



‘has awakened awareness and questions . . . about understanding culturaldifferences and family dynamics. This task requires reaching a deeper balance ofreciprocal responsibility, integrity, commitment, and unquestionable trust in thepatient-doctor-family relationship’.75

Culture and ethnicity are not the only factors which influence the approach totruth-telling particularly and patient autonomy generally. Surbone emphasises thattensions between clinicians, patients and relatives regarding the range of informationdisclosed to the patient are common in cancer care regardless of the cultural origins ofthe patient and the family.76

In any case, professional doubts about truth-telling as evidenced in the literaturestand in sharp contrast to the legal framework. As shown above, the law and profes-sional ethical guidelines stress the importance of sharing information with the patient.The legal position in this context is clear: doctors owe a legal duty to inform theirpatients.77 Failing to inform them exposes the clinician to the risk of a legal claim.78

Ultimately, a decision not to inform the patient rests with the clinician, and therelatives have no say in it.79

Therefore, the current legal position does not allow the clinician to respect theethical approach of patients and relatives from different ethnic backgrounds. In somecommunities individual autonomy has little relevance. Mutual responsibility in thefamily and the moral duty to protect its vulnerable members are more important.However, neither the law nor professional ethical guidelines in England and Walesfully accept such an approach. The question of whether they should will be discussedin a separate paper. It is a difficult issue, with significant social, political and publicpolicy implications. Notably, the fact that there is no room for a different moralapproach when truth-telling is considered raises serious concerns about the purpose ofthe law, which aims to resolve tensions and not create them.

The discussion about truth-telling highlights the moral dilemmas clinicians faceregarding their role in the decision making process. Clinicians in the UK provide theirservices within a liberal framework where individual autonomy is the overridingprinciple and the provision of information is a legal duty. Yet, in practice they treatpatients whose moral perception may be different. For many patients and families, arelative’s request not to tell patients the truth about their illness is by no meansconsidered abuse, undue influence, or unjustified controlling intervention. In theirview, the request reflects compassion and fulfils the mutual moral responsibilityfamily members owe each other when one of them becomes seriously ill. To sum up,the socio-medical literature shows that clinicians see the family as a source of infor-mational and emotional support to the patient. They acknowledge the relatives’ influ-ence on the patient’s decision but believe that his/her interests should prevail. Theymay form a coalition with the relatives to persuade the patient to accept their advice,but they struggle when relatives have their own agendas or moral principles which donot accord with their or the patients’ preferences. In light of this background, the aimsof the present study are to examine whether there is a difference between the views

75. L Baider and A Surbone ‘Cancer and the family: the silent word of truth’ (2010) 28 (7)Journal of Clinical Oncology 1269.76. A Surbone ‘Telling the truth to patients with cancer: what is the truth?’ (2006) 7 LancetOncology 944.77. See Jackson, above n 10, ch 4.78. M Jones Medical Negligence (London: Sweet and Maxwell, 4th edn, 2008) ch 7.79. See the discussion about therapeutic privilege in Sidaway, above n 41, pp 889–890.



and experiences of clinicians regarding family involvement in the medical decisionmaking process, and the attitude of English law and professional guidelines. Addi-tionally, the study examines the influence of the legal position and professionalguidelines on the doctor-patient-relatives relationship. The focus in the paper is ongeneral practice, an area which reflects a family-based approach.80

5. METHODOLOGY

The study is based on qualitative research methods drawing on an interpretivegrounded theory approach. Findings from interviews with ten GPs are presentedbelow. They are part of a wider study which examines family involvement in themedical decision making process in practice and law in England. It consists ofsemi-structured interviews with clinicians, patients with long-term illnesses, and theirrelatives. Clinicians from different specialties were recruited in six NHS trusts, whilethe GPs were recruited independently.

The study provides a unique opportunity to observe the relationship between lawand practice and the differences in their approach to patient autonomy in decisionmaking. Yet, it has several limitations. First, it is based on a small number of inter-viewees who are all connected with a particular medical specialty. Further research isrequired to examine whether clinicians in other specialties share similar views. Sec-ondly, the GPs’ accounts could not be compared with the experiences of their patientsand their patients’ relatives because the patients and relatives were not interviewed.Last, all the GPs were of white ethnicity and faced certain difficulties when treatingpatients from ethnic minority backgrounds.81 Further research is required to examinethis cultural factor.

(a) Recruitment and inclusion criteria

Recruitment began following receipt of the required NHS ethics and institutionalapprovals.82 The recruitment of GPs was not conducted through the NHS; rather, theauthor requested colleagues to approach potential participants and ask if they wouldagree to take part in the study. Those who expressed interest emailed the authordirectly, who then sent them information sheets. The inclusion criterion for theclinicians was active involvement in decisions about treatment of a long-term illness.All the GPs in the study treated patients with chronic or terminal illnesses.

(b) Data collection and analysis

The interviews followed a topic guide. The GPs were asked about their attitude to thepresence of relatives in consultations. They were asked about the involvement ofrelatives in the process of diagnosis, delivery of bad news, and making decisions aboutand during the provision of treatment. For example, the GPs were asked to describeconsultations during which they had to convey bad news. They were asked about thepatients’ and relatives’ reactions, and the dynamics in those consultations.

80. See McWhinney, above n 55.81. See the findings presented below.82. The recruitment process in the NHS is described in Gilbar, above n 5.



All the interviews were recorded and transcribed, subject to written consent by theinterviewees. The transcripts were then analysed using a thematic approach.83 Eachtranscript was coded nearly line-by-line, creating a code book based on deductivecoding (recording pre-determined codes) and inductive coding (recording new inde-pendent codes). The codes were then grouped into categories, and common categorieswere identified and grouped into themes. The author’s two academic supervisors wereinvolved in the analysis process. They read parts of the data and analysed themindependently. Their analyses were compared with the one conducted by the author,and the level of agreement was found to be 60–70%. Divergences between author andsupervisors were discussed and resolved.

(c) The interviewees

The GPs’ main characteristics are shown in the table below. Five GPs are currentlyinvolved in educating medical students or doctors. Four participants have recentlyretired as full-time GPs but still work as locums. Several of the GPs provided theirservices in underprivileged areas and others worked in areas with a high proportion ofpatients from ethnic minority backgrounds. The sample consists of five males and fivefemales. To protect anonymity, the GPs’ names were changed.

Demographic attributes of participating GPs

Name Role Gender Age Ethnicity Additional background

Morin Full-time Female Early 60s White Retired. Works as a locum and amedical educator.

Andrew Full-time Male 30s WhiteBen Full-time Male 60s White Retired. Works as a locum.Carrie Full-time Female 40s WhiteJoshua Full-time Male Early 60s White Retired. Works as a locum and a

medical educator.James Full-time Male Late 50s White Works as a medical educator.Irene Full-time Female 60s White Retired. Works as a locum.Pamela Freelance Female Late 50s White Works as a medical educator.Peggy Part-time Female 30s WhiteWayne Full-time Male 30s White Worked as a medical educator.

6. THE FINDINGS84

The following common themes, which relate to the issues of communication betweenclinicians, patients and relatives, will be discussed in this section: relatives’ presencein medical consultations; relatives’ direct contact with the GP without the patient; andrelatives’ influence on decisions. The GPs’ attitudes to language barriers and cultural

83. A Strauss and J Corbin Basics of Qualitative Research (London: Sage, 2nd edn, 1998); KCharmaz Constructing Grounded Theory (London: Sage, 2006).84. The impact of gender on the perception of autonomy was not examined, partly in light ofthe small size of the sample. By and large, though, a difference in the respondents’ views basedon gender was not detected. There were male GPs who adopted a relational approach andfemale GPs who adopted an individualistic approach.Yet, this aspect merits a separate empiricalinvestigation.



differences in the consultation room will also be touched on. These themes will shedlight on the involvement of relatives in the process of informed consent.

(a) Relatives’ presence and role in consultations

The GPs’ general attitude to the presence of relatives in consultations was positive.Some preferred a family consultation to a one-to-one meeting. Joshua said: ‘I loveworking with lots of people in the room because you can get so much conversation, andso much energy’. Others did not mind having a relative present and left it to the patientto decide. They assumed that if a relative was present the patient had consented to it.

There was agreement among the GPs that the presence of the relatives was by andlarge ‘helpful’, mainly because they provided informational support to the patient.Andrew explained: ‘Sometimes having an extra person there is quite useful, becauseI think it’s just a second pair of ears to corroborate the story’. Andrew also recognisedthat relatives can enhance the level of communication between doctor and patient:‘Sometimes [relatives] ask questions, or are actually quite useful for the other person’.Moreover, some GPs stated that the relatives help the patient understand the informa-tion conveyed by the doctor to the patient.

Another purpose of the relatives’ presence was to provide emotional support to thepatient, especially when bad news was delivered. Morin aptly summarised the dualrole relatives have in consultations:

‘If there is something serious or complicated to explain to somebody it’s veryhelpful to them to have somebody else there, because apart from helping to cushionthe emotional blow, it’s . . . understanding the information and writing things downand remembering the questions’.

Lastly, the GPs appreciated that one of the relatives’ roles when present was to takepart in discussions about treatment.

Despite their awareness of the positive aspects of the relatives’ presence, the GPsemphasised that their presence was difficult in the following circumstances:

(1) When patients and relatives had different agendas. Carrie said: ‘Two people [in theroom] have got two lots of questions and two lots of . . . agendas sometimes’.

(2) When the relative – usually a male partner – took control of the meeting, thusexcluding the patient from the discussion. Pamela said: ‘I can think of situations wherethe woman has come ostensibly for advice regarding termination of pregnancy and thepartner is there and you are not sure how much the partner is a coercive factor’.

(3) When there was a language barrier. A patient who did not speak English and a relativewho acted as the interpreter posed a real difficulty for the participating doctors. Therewas a consensus that such a situation should be discouraged and that having aprofessional interpreter is a better option. The essence of the problem was that the GPsdid not know whether the information communicated by the patient was delivered tothem accurately, and vice versa. They felt that having a relative as the interpreteradversely affected their ability to communicate properly with the patient and informhim/her about his/her condition. Ben said: ‘I have to go through the husband, and oftenthe husband answers without asking the wife, so, you know, that’s obviously wrong,so that’s a difficult situation’.85

85. This view accords with both the GMC guidelines, above n 49, and the RCGP guidelines,above n 56.



(4) When patients and relatives had a different ethical approach to the doctor. Thisoccurred when the patient and the relatives came from an ethnic minority background.For example, some GPs who strongly believed in the patient’s active involvement inthe decision making process noticed that the patient was passive and allowed the(male) relative to control the discussions. The GPs felt uncomfortable about that. Bensaid: ‘That’s complicated, because my guess is the woman doesn’t see that as aproblem necessarily . . . in their culture, it’s perfectly acceptable for the husband tospeak on behalf of the wife, but it causes me a problem’.

(5) When the GP and the relatives had different views about the proposed decision. Carriesaid: ‘I mean it happens very frequently that you’ll have a relative saying “butshouldn’t they have a scan” . . . when you’ve already explained and the patient seemsto have accepted your management plan’.

The GPs’ comments suggest that decisions are made in a social context when thefamily is closely involved in the process. The experiences of the GPs accord with thoseexpressed by patients and relatives.86 They stated that relatives who attended theconsultations listened to the information the clinician communicated and asked ques-tions which the patient had not asked. This was advantageous, as some patientsadmitted that they were too upset to absorb all the relevant information the clinicianshad communicated to them, and asked the relatives to repeat what the clinician hadsaid when the consultation ended.

There is thus a consensus among the three groups – clinicians, patients andrelatives – that the provision of informal and emotional support by the relatives helpsthe patient make an informed decision. This reflects a relational perception of patientautonomy which stresses the contribution of significant others when patients facedifficult decisions. However, the five areas of difficulties discussed above demonstratethat an individual perception of autonomy is required to protect the personal interestsand preferences of patients. Passive patients might want to remain inactive and lettheir relative lead the discussion with the clinician, but other patients might not.Finding out the patient’s preference regarding the level of family involvement duringthe decision making process is a delicate but essential task.

(b) Direct relative-clinician contact without the patient

One of the most difficult situations encountered by the GPs was that of relatives whocontacted them directly, asking them to conceal information from the patient. Thereason for this difficulty is rooted in the different approaches clinicians and relativeshave regarding patient autonomy generally and truth-telling particularly. The GPsbelieved that patients should be told the truth about their illness in order to enablethem to make informed decisions. This was the case particularly when the patient wasterminally ill.

Several GPs expressed the view that truth-telling is morally right. Carrie made adistinction between her professional duties to the patient and to the relatives. She said:‘Actually you don’t have to respect that relative. My duty of care is to the patient, notthe relative’. Pamela relied on empirical evidence which suggests that most patientswant to know the truth, and Wayne relied on his experience that in most cases patientsknow they are seriously ill.

86. See Gilbar, above n 5.



Notably, despite the strong cultural aspect that is highlighted in the literatureregarding truth-telling,87 only Morin emphasised this point,88 whereas the other GPshighlighted the type of illness (cancer) and the patient’s psychological resources as themost relevant factors when considering whether or not to tell the patient the truth.

In any event, tensions between GPs and relatives over the scope of informationcommunicated to the patient demonstrate the difficulties that family involvement cancreate for clinicians. These difficulties relate to theoretical questions about individu-alism on the one hand, and collectivism on the other, both of which comprise theindividual’s identity.89 While the patient’s sense of individualism is promoted orprotected by the clinician who follows the law and respects the patient’s right toself-determination, a sense of collectivism is represented by relatives who perceive thepatient fundamentally as a member of an intimate community that protects itsmembers. The result is that the relatives’ request not to tell the patient the truth causesa serious dilemma for the clinician, deriving from the clinician’s understanding thatindividuality is important but that the close attachment of relatives is also valuable.

However, despite the GPs’ recognition that the relatives’ input was valuable, theydid not ignore their duty to inform the patient. Their accounts suggest that in thiscontext their personal moral view is similar to that of the legal and professionalframeworks.

How do the GPs resolve these tensions? There was agreement that good commu-nication skills can help resolve them. Some GPs said they tried to meet the patientalone to find out what he/she knows about the illness. Others said they tried to meetthe patient together with the relatives to find out what the patient knows. The messagewas clear: deliberation and reconciliation were the tools, not confrontation.

To sum up so far, the GPs who took part in the study assign an important role to therelatives in regard to two of the three components of informed consent: provision ofinformation (including intentional non-disclosure) and understanding. What does thissay about the clinicians’ attitude to the relatives at the point of decision making? Arerelatives perceived as a hindrance or an asset? This is discussed next.

(c) Attitudes to family involvement when making a decision

(i) asset or burden?

The last stage of the process of informed consent is consenting to – or authorising –treatment. The GPs’ views about the involvement of relatives when a treatmentdecision was made varied. Despite a family-based approach in general practice,90

several GPs expressed a preference for a two-way rather than three-way communica-tion process. Andrew stated: ‘My dialogue still always focuses on the patient. I don’treally bring in the other person’. Ben, too, said: ‘I see myself as the agent of thepatient, that’s my prime concern . . . I definitely do not think of the family as the primeunit of care’.

87. K Mystakidou et al ‘Cancer information disclosure in different cultural contexts’ (2004)12 Supportive Care in Cancer 147.88. Morin was one of the GPs in the group who treated patients from a South Asian back-ground.89. S Minuchin Families and Family Therapy (Cambridge, MA: Harvard University Press,1974) pp 47–48.90. H Curry ‘The family as our patient’ (1974) 1(1) Journal of Family Practice 70.



Ben and Andrew follow the legal position discussed above by focusing on theindividual patient as their prime concern.91 Ben, more than Andrew, conveyed aninhospitable attitude to the family, viewing the involvement of relatives essentially asa hindrance. Both expressed a primary concern for the independence and fundamentalrights of the individual patient.

Yet, other GPs showed a consistently familial approach and a positive attitude tofamily involvement when the patient faced a treatment decision. Pamela stated: ‘I thinkthat . . . the person who is going through the procedure has to be the one that decides,but . . . you’ve got to take into account the relatives, you can’t just pretend they don’texist, it’s unhelpful’. Morin was more explicit. She said that when a decision hasimplications for the relatives’ lives, then ‘you could make a case for it having to be ajoint decision really, and really should not be just the doctor and the patient’.

These comments are situated on the relational side of the debate about autonomy,although there are differences between these two GPs. While Pamela sees the patientas the sole decision maker, albeit making the decision in a familial context, Morinprovides the relatives with an independent status when a decision is made.92 Inprinciple, they both agree that the relatives’ interests are part of the equation; thedifference between them relates to the influence the family has in practice.

Situated in the middle, several GPs expressed a dual approach: reservations aboutthe involvement of relatives, but recognition of its importance when the patient madea decision. Wayne, for example, conveyed a positive view but also cited the negativeaspects of family involvement:

‘I don’t think it’s a hindrance. It can be annoying or frustrating if there aremore parties involved because things take longer and you try to please everyoneand so it can be challenging, but it rarely causes a problem. It probably helps theissue more. You have to accept that . . . these people are often very close to thepatient and they have talked it through with the patient often, and I think it aidsgood care’.

Irene also projected a dual approach. On the one hand she said:

‘I think in most relationships the relation will be involved in terms of at leastdiscussing with [the patient] – not with you necessarily. So if the patient comes [tothe consultation] on their own, I am often going to say, “What does so and so thinkabout this and what are their feelings about it?” ’

On the other hand, in replying to my question of why it was important to ask thepatient what the relative thought about the proposed treatment, she said: ‘Because thenyou know what pressures [the patients] are under’. When I suggested that her answerimplied that relatives have a negative influence on patients, she rejected that notion,saying: ‘Well, not necessarily. I mean, not necessarily at all. I mean many relatives willsay “It’s your decision and I will support you whatever you say”, and that’s againimportant to know’.

To sum up, the clinicians’ attitudes to family involvement when making treatmentdecisions were a matter of degree. Some expressed a more individualistic approach.They focused on the individual patient and were reluctant to involve relatives indecision making. Others, however, believed that family involvement is inherently part

91. Ben actually reiterated the GMC’s opening recommendations word for word. See GMC,above n 49.92. Morin’s view is similar to that of Hardwig, above n 14.



of decision making. No matter what their general approach was, all the GPs recogn-ised that while patients have the final say, relatives are an inseparable part of thedecision making process. This, in my view, should be reflected in the scholarlydiscourse about informed consent. However, the discussion cannot be concludedwithout a close examination of the GPs’ attitude to family pressure.

(ii) family pressure

Notably, the GPs were reasonably tolerant towards pressure exerted by relatives on thepatient. Several GPs said they explicitly told relatives that the decision regardingtreatment is the patient’s, and not theirs, but almost all the GPs preferred a non-confrontational approach when observing a relative trying to influence the patient tomake a particular decision. They believed that the right way to reduce family pressurewas to conduct discussions with the relatives indicating to them that there are otheraspects to the decision. Morin said: ‘I would encourage the relative to understand thatit was their own stuff they were bringing into it, and not the patient’s stuff. But, it’squite difficult’.

Carrie described a case in which she managed to help a patient implement hisdecision despite his relatives’ opposition. This led her to express a view similar toMorin’s: ‘Most people are not aggressive . . . if they say “he doesn’t want any treat-ments” . . . and you say “I’m sure that’s fine but I just need to confirm that’s what hewants as well” . . . There are ways of doing it’.

These views accord with the position of writers such as the Lindemann-Nelsonswho believe that open discussions about the different agendas and preferences of therelevant parties will in most cases help resolve the issue without a serious confronta-tion.93 The participating GPs viewed themselves as mediators when there were dis-agreements in the consultation room. Their practical experience taught them that inmost cases disagreements derive from the relatives’ intention to promote the patient’sbest interest while the patients themselves express different preferences.

Ultimately, most of the GPs stated that their intervention in family discussionsabout treatment options was limited. Whether their approach was patient-centred,family-based or a combination of the two, the GPs acknowledged that the influence ofthe relatives on the patient’s decision was equal to if not often greater than theirs. Yet,in contrast to the legal position and the professional guidelines discussed above,94 theydid not perceive familial influence as exceptional or essentially problematic. Theyaccepted it and learned to live with it as part of their daily professional life.

(iii) coalitions

Coalitions were part of the doctor-patient-family relationship. The GPs felt they hadto form a coalition with their patients in order to help them make a decision, especiallywhen they sensed that a relative was dominant. Ben said: ‘I have an allegiance to thepatient, and I know that in most situations the patient would not necessarily feel thesame as the husband’. Notably, a similar view was expressed by Pamela, who held anexplicitly familial approach. Pamela felt obliged to support the patient in the consul-tation when she felt that the male partner became too dominant. Other respondents in

93. See above n 14.94. See Re T, above n 4; GMC guidelines, above n 49, paras 41–42.



the research group chose the option of asking the relative to leave the consultationroom when they felt that the presence of the relative compromised the patient’s abilityto express his/her preferences and concerns.

The GPs also formed coalitions with relatives. Wayne cooperated with a patient’shusband to help him overcome the patient’s denial of the seriousness of her condition.Wayne felt that he did so more for the husband than for the patient. He explained thathe tried to help the husband, who was the main carer. Andrew described a similar casein which he acceded to a relative’s request to tell a patient that she is dying. Generally,the GPs admitted that in these instances patient autonomy was compromised as aresult of their collaboration with the relative, but they nevertheless cooperated in thisbecause they believed that morally it was the right thing to do. Overall, however, thesecases reinforce the importance of individual autonomy as advocated by the courts andthe GMC guidelines.

Lastly, several GPs talked about an alliance between patients and their relatives.They perceived the relatives’ role as representing the patient’s interests when thepatient needed their help and moral support. Peggy said: ‘I think elderly patients oftenlike to have someone with them, an advocate, a family member’.

Carrie summed up this point well:

‘Sometimes the patient needs your support to actually explain why theirdecision is reasonable or should be respected. Sometimes you do have to side withthe relative, and sometimes you just end up saying to a patient: “Your husband isconcerned about you, and other members of your family are concerned [too]” ’.

The findings in this sub-section reveal that the decision making process in practiceis based on a three-way communication process and on a triadic relationship. Discus-sions and negotiations which lead to coalitions in the consultation room are not rare,and in many cases they enhance the patient’s ability to make independent decisions.However, these coalitions, as the GPs themselves acknowledge, also mitigate patientautonomy even when the intention is to promote the patient’s best interests. Overall,the GPs’ comments in this context clearly reflect a more integrative approach than thatindicated by the English courts or by professional ethical guidelines. Whether the lawshould adopt the views of clinicians, patients and relatives will be discussed below.

(iv) family support as family involvement

The GPs in this study pointed to the strong link between family support and familyinvolvement in decision making.

Andrew, for example, linked family support and family involvement in decisionmaking. Andrew described his personal experience as a patient when he consultedwith a surgeon together with his partner before an operation he needed. His partnerprovided him with informational support, helping him absorb and process the infor-mation they received from the surgeon. Thereafter, when Andrew had to make his finaldecision, he turned to his partner and asked her what she thought about the treatmentoptions. Thus, although Andrew made the decision, he took his partner’s view intoaccount. His partner had an impact on his decision. In discussing his patients and theirrelatives, Andrew highlighted this shared process of receiving information, processingit and contributing to the decision about treatment. It was apparent that in his view, therelatives’ support leads to their active involvement in decisions about treatment.

To conclude, the fact that relatives are present in consultations and help the patientabsorb and process the information leads them to discuss its ramifications with the



patient. Thus, although formally relatives might not have an equal standing when atreatment decision is made, and the patient alone has the ultimate authority to decide,they still have an influence on the decision by voicing their views in discussions withthe patient. Legally, however, this aspect is not fully recognised.

7. ANALYSIS OF FINDINGS

By and large, the GPs’ accounts reflect a perception of relational autonomy. Theydescribed an ongoing process of communication and decision making from the initialstage of diagnosis to the final stage of recovery or end of life. This process was basedon deliberation, negotiation and mutual persuasion, a process, the GPs acknowledged,that could not be handled by the patient alone. The relatives were there when thepatient had to go through the various stages of diagnosis and treatment and makeinformed decisions.

The GPs’ accounts, it appears, accord with Kuczewski’s view that in most casespatients test their understanding of the ongoing information they receive with theirrelatives.95 This is especially true when, in light of a development in their medicalcondition, patients face the need to make new decisions, which they discuss with theirrelatives. Thus, it appears that whether relatives provide informational and emotionalsupport only, or whether they are also active participants in decision making, they areoften involved in the process, although their level of involvement varies according tothe patient’s ability and willingness to play an active role in decision making. Theaccounts provided by the GPs reveal that they, like the patients’ relatives, see them-selves as the patient’s advocate. When they feel that the relatives are too dominant, orexert substantial influence, they try to protect the patient and promote his/her right tohave the final say.

How do these findings and the analysis of them affect the legal position andprofessional guidelines? This will be discussed next.

8. LEGAL DISCUSSION

Our investigation so far has led to several conclusions, as follows. The recent scholarlydiscourse about informed consent promotes a relational approach. However, currentlythis discourse does not address the role of the family but focuses on a partnershipbetween the individual patient and the clinician. Essentially, it presents a model whichis centred on the characteristics of the particular patient. The clinician is urged to takeinto account the patient’s personal wishes, needs and goals.

Similarly, English law and professional guidelines espouse a shared decisionmaking model, but they too do not perceive the family as an integral member of thedecision making team. However, the findings presented in this paper reveal a differentreality. Although the individual patient remains the focus of clinical attention and hasthe ultimate say in consenting to or refusing treatment, relatives are inherentlyinvolved in the process either by supporting the patient when needed or by activelyparticipating in discussions when decisions must be made. The relatives’ involvementcan be challenging in some cases, but undeniably it is part of the clinicians’ reality.

95. See Kuczewski, above n 39.



How does this fit the legal position and professional guidelines? There are somesimilarities between the GPs’ experiences and the legal position. The GPs’ belief thatpatients have a right to be informed (even when it is not clear that they want to know)is in accord with the legal position and professional guidelines. In addition, their beliefthat the patient is the ultimate decision maker also accords with the legal position.

However, there are also differences between the law and the GPs’ views. Onedifference relates to the communication of information to patients. The findingspresented here and elsewhere show that there is a consensus among patients, relativesand GPs that the presence of a relative is beneficial, especially when GPs delivercomplex information or bad news to a patient. However, the law does not address thisaspect of family involvement. It does not address a common situation, described bymany participants in the study, of competent adult patients relying on their relatives toabsorb and understand the information they receive from the clinician. A commonexperience described by GPs, patients and relatives suggests that without the relatives’presence, and their informational support, the consent of the patient may well be indoubt. The GMC guidelines do not address the advantage of having a relative in theroom when information is provided to the patient.

Another, related difference between English law and the experience of GPs per-tains to the disclosure of information. As stated above, doctors owe a legal duty toinform their patients, and the patients’ right not to receive information is limited.96

However, some GPs in this study doubted whether imposing information on patientswho preferred to be in denial served their personal interests and preferences. Somepatients showed a reluctance to ask questions and to be fully updated about theirillness. In addition, other clinicians and medical educators have raised doubts inpublished work as to whether delivering all the relevant information about diagnosisand treatment to the patient is beneficial.97 In light of this evidence, the law and theGMC guidelines are not sensitive enough, in my view, to other views and ethicalvalues relating to the scope of disclosure to patients.

Other differences between the law and the GPs’ views relate to the patient’sindependence. The GPs’ accounts reported above reinforce the conclusion that thecourts and the GMC guidelines do not reflect the positive influence relatives have on thepatient when s/he faces an important decision. They do not consider the GPs’ experi-ence that generally relatives help patients feel more confident when they approach thehealthcare system and must make decisions about their illness. The guidelines reflectsuspicion and hostility towards relatives’ conversations with the patient.Yet, the GPs inthis study accepted that the relatives’ contribution is positive overall and seldomoverbearing. They admit that the involvement of relatives can be complicated, butgenerally they view family involvement as helpful. The GPs were aware that not allrelatives support the patient unreservedly, and that there are relatives who disagree withthe patient, but they also believed that clinicians should not interfere in the patient-relative relationship even when the relatives are dominant. In their view, a non-confrontational approach, with all the parties voicing their concerns openly, is the rightway to resolve tensions over a decision. This approach is not evident in English law,which directs clinicians to protect patients from their relatives’ influence.

Arguably, these differences are not substantial, in that ultimately the law, theguidelines and the clinicians perceive the patient as the decision maker and provide

96. See Sidaway, above n 41, pp 889–890.97. R Epstein, D Korones and T Quil ‘Withholding information from patients – when less ismore’ (2010) 362(5) New England Journal of Medicine 380.



some room for relatives to participate in the process, depending on the patient’spreferences. However, the underlying approach does differ in a significant way. Whilethe accounts of clinicians, patients and relatives reflect a triadic relationship, the lawstill relies on the traditional dyadic doctor-patient relationship.

Does it matter? Indisputably, the legal exclusion of relatives from the decisionmaking process adds difficulties to the complex tasks of clinicians. Tensions betweenclinicians and relatives over disclosure of information to the patient demonstrate this.The strict rule of confidentiality, which is discussed elsewhere, is another problematicaspect.98 To avoid these tensions, and to adequately reflect the inherent involvement ofrelatives, a perceptual change in law and professional guidelines should be made.

The change I propose is to constitute the legal and professional model of thedecision making process on a doctor-patient-family relationship. The change requiredis to perceive the relatives as an integral part of the decision making team.99 This doesnot necessarily mean that the relatives will have an equal say when decisions aremade,100 but it will reflect the inherent part they play in the decision making process.101

What does this change mean? Regarding the component of independence, or thepatient’s ability to make voluntary decisions in light of the influence of his/her family,the current hostile approach taken by the courts and the GMC guidelines should bereplaced by a positive approach which reflects the reality for many patients that familyinvolvement helps them make independent and voluntary decisions.102

Regarding the information component of patient autonomy and informed consent,in my view information about the implications of the patient’s diagnosis and proposedtreatment for the close relatives and their lives should be one of the topics conveyedto and discussed by the clinician with the patient.103 This will enable the patient tomake a better judgment about the impact which any treatment option will have onhis/her physical health, on the emotional and functional support he/she would needduring treatment, on the interests, goals and capacities of the relatives, and on thefamily’s life generally. Indirectly, such information may also have another positiveimpact on the patient: the clinician, in familiarising him/herself with the patient’ssocial and familial circumstances, may decide to discuss risks which he/she might nothave intended to disclose originally.

Regarding the patient’s understanding, legally the clinician is required to takereasonable steps to ensure a certain degree of understanding. This might be achievedmore effectively by guiding the clinician to communicate complex information to thepatient when a close relative is present.104 Although the patient cannot be forced to

98. R Gilbar ‘Medical confidentiality and communication with the patient’s relatives: legaland practical perspectives’ (forthcoming).99. This assumes that confidentiality is not an issue and that the relatives do not try to promotetheir personal interests at the patient’s expense.100. Notably, although doctors currently have a substantial influence on the patient’s decision,they too do not have the final say. The development of this model generally, and the exact legalrole of the relatives particularly, will be discussed elsewhere.101. Such a change of perception can begin by redrafting para 3 of the GMC guidelines whichcurrently states that decision making in healthcare is based on a partnership between theclinician and the patient. The relatives should be added to this formulation of the partnershipmodel.102. See Gilbar, above n 5.103. See GMC, above n 49, para 9.104. An addition can be made to para 11 of the GMC guidelines, which currently states that‘the clinician should check whether patients have understood the information they have been



bring his/her relatives to a meeting that will convey bad news, or to a pre-operativeconsultation, clinicians should encourage patients to do so. This should be set as astandard practice.105

Furthermore, the clinician should ask the patient whether the relatives are aware ofthe medical consultation and, if the patient has already been diagnosed, whether theyare aware of the patient’s diagnosis. If the patient did not involve the relatives, theclinician should find out why, and if the relatives are informed but not present, theclinician should ask the patient what the relatives think about the diagnosis andproposed treatment. This will enable the clinician to tailor his/her approach to theparticular patient.

Another change should relate to intentional non-disclosure, or truth-telling. Asshown above, the leading commentators, courts and GMC guidelines virtually rejectthe possibility that the patient not be told of the basic information about his/hercondition. They also reject relatives’ requests to conceal information from the patient.Law and professional guidelines had a significant impact on the GPs in this study whobelieved that the relatives’ request should be rejected. However, as the literatureshows, and as the GPs themselves appreciated, requests by relatives not to fully informthe patient may derive from the social and familial context in which the patient lives.Age, cultural background, ethnic origin, religious belief and family life story areamong the factors that may lead relatives to ask clinicians not to inform the patient, orto inform him/her gradually.

The law and professional guidelines currently do not take social and familialfactors into account when addressing the issue of intentional non-disclosure. Theylimit the option of non-disclosure only to cases when disclosure will cause the patientserious harm (not merely upset or refusal of treatment). If the aim of the law andprofessional guidelines is to be sensitive to patients and relatives with different values,then the law and professional guidelines should be more flexible and provide room forthese cases.

These suggested changes are not exhaustive, but they indicate that family involve-ment should not be addressed separately but rather as an integral part of the commu-nication and decision making processes. The beneficial involvement of relatives inreceiving medical information and discussing it with the patient before he/she makesa decision should be part of the main thrust of medical decision making policy. It willthus reflect the reality experienced by many clinicians, patients and relatives, and theviews expressed by bioethicists and social scientists.

What, then, is the contribution of the participants’ accounts to the legal andbioethical discourse about informed consent? In my view, their accounts reflect arelational approach to patient autonomy, calling for respecting the needs, wishes anddecisions of the particular patient but suggesting a further step: the legal and profes-sional approach should depart from the dyadic doctor-patient relationship and adopt a

given, and whether or not they would like more information before making a decision’. Thefollowing can be added: You can try to ensure the patient’s understanding by involving therelatives, if present in the consultation. Similarly, para 12 should state: You must answerpatients’ and relatives’ questions honestly and, as far as is practical, answer as fully as theywish.105. The suggested change can be made in para 7 of the GMC guidelines, which currentlystates that ‘the exchange of information between doctor and patient is central to good decision-making’. Instead, the paragraph should state that the exchange of information between doctor,patient and relatives is central to good decision making.



doctor-patient-relatives relationship, with the precise role of the relatives still to bedebated.

CONCLUSION

In this paper I explored the issue of family involvement in the medical decisionmaking process. Relying on a relational approach, and empirical evidence, I arguedthat a fundamental change is required in law and professional guidelines, acknowl-edging that the medical decision making process is based on a doctor-patient-relativesrelationship. More specifically, changes are required in the legal attitude to informedconsent, which relates to the scope of disclosure, level of understanding, and ulti-mately to the patient’s ability to make informed decisions. Introducing these changeswill position English medical law on a par with other disciplines, such as healthsociology and communication, which have already recognised the involvement ofrelatives in the medical decision making process. It will also require the law andprofessional guidelines to put greater trust in the family.



asset or burden? informed consent and the role of the family: law and practice

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