Chapter 3 Communication: confidentiality, breaking bad news, and obtaining consent

Communication: confidentiality, breaking bad news and obtaining consent Communication

Communication is a core clinical skill that constitutes a main ingredient in the complex physician–patient relationship.

• Rapport-building: the shaking of hands and a general introduction which transmits dynamism and expressiveness often establishes the social tone of the consultation, helping to dissipate worries.

• Partnership-building: setting the main reason for the visit and asking if the patient has any other issues or concerns paves the way for the physician to help the patient understand the course of the treatment and to legitimate the role of the woman in the process, thereby contributing to the development of an active partnership.

• Information transfer: this occurs on multiple levels:

• the content level of communication is usually transmitted linguistically,

• the relationship level may be transmitted either linguistically, paralinguistically (tone of voice, gestures, etc.) or may be derived from the context.

Patient–gynaecologist communication

This is characterized by several specific features placing great demand on the communication behaviour of the physician.

• The health problems presented are frequently of intimate nature and have a high emotional impact. Gynaecologists have to respond to these emotions and personal beliefs and values of their patients.

• Diagnostic and therapeutic interventions influence body image, sexuality and self-esteem.

• Reproduction and sexuality are issues that encompass the patient’s whole life, involving specific life cycles and psychosocial issues.

• Many healthy women consult with concerns regarding health maintenance, promotion and health behaviour. They are not patients in a traditional sense but partners with an interest in informed decision-making, autonomy and enhancement of their health-related interests and objectives.

Although formerly thought that patients were more satisfied with female gynaecologists regarding the relationship and consultation process, regression analyses has demonstrated that it is not gender by gender-related specific communication skills, mainly patient-centred communication, that seemed to be the crucial factor influencing patient satisfaction. Gynaecologists and obstetricians therefore need a specific competence in patient education, information exchange, behavioural change and negotiation. A recent survey on hospital care showed that, in Obstetrics and Gynaecology, women rate early postnatal care in hospital far less favourably largely based on the interaction with care-givers. It has been well documented that malpractice claims are often associated with poor communication and that effective communication could reduce these claims (Tsai et al. 2004).

The General Medical Council (GMC) emphasizes that for a relationship between a doctor and patient to be effective, it should be a partnership based on openness, trust and good communication. Good communication skills in general and knowing how to impart bad news in particular are considered central to being a good doctor (GMC 2004). Equally, good interprofessional communication is essential for effective and coordinated care.

Standards have been set by the Royal College of Obstetricians and Gynaecologists (RCOG) with regard to communication both in Obstetrics and in Gynaecology (RCOG 2008a,b). These include an emphasis on effective communication between team members and each discipline, as well as with women and their families and imparting training to all healthcare professionals on how to communicate in an effective and sensitive manner.

1. Offering information to each patient in an accessible form, on the full range of options available, including locally available services and allowing enough time to reflect upon the information, consider options and seek additional information and advice prior to making ‘informed choices’.

2. Providing interpreting services to women whose first language isn’t English and making funding available for these services in the community, especially in emergency situations.

3. Making a summary of the woman’s care available to her GP within 10 working days and ensuring that a local mechanism is in place to communicate urgent results to the woman and her GP.

4. Ensuring that routine appointment letters are worded appropriately and that pre-appointment letters for one-stop clinics provide clear information regarding the procedure and the investigations that might be performed.

Effective communication between doctors and children/young people

This is essential to the provision of good care.

• You should be available to see children and young people on their own if that is what they want. The presence of a parent or chaperone can sometimes deter young people from being frank and from asking for help.

• You should talk directly and listen to children and young people who are able to take part in discussions about their care. It is preferable to ‘speak to’ rather than ‘speak about’, because the latter is often resented. The views of young people should be taken seriously and not dismissed.

• When they want or need to know about their illness or treatment, information should be provided in a manner that is easy to understand and appropriate to their age and maturity. Information should only be kept from them if they ask you to, or if it would cause them serious harm. Confidentiality

Confidentiality is central to trust between doctors and patients (GMC 2004). Patients have a right to expect that information about them will be held in confidence by their doctors.

The following standards have been outlined by the GMC in its current guidance on confidentiality (GMC 2004):

1. One should take reasonable steps to ensure that all consultations with patients are private.

2. Patients should not be discussed where one may be overheard; nor should records be left either on paper or on screen where they may be seen by other patients, unauthorized healthcare staff or the public.

3. One must ensure that anyone to whom personal information is disclosed understands that it is given to them in confidence, which they must respect. All staff members receiving personal information in order to provide or support care are bound by a legal duty of confidence, whether or not they have contractual or professional obligations to protect confidentiality.

4. Disclosures should be kept to the minimum necessary and patients should be informed.

5. Data should be anonymized prior to disclosure when possible, and when not patients’ express consent to disclosure of information must be sought, save in the exceptional circumstances described later.

6. Doctors must keep up to date with and observe the requirements of statute and common law including data protection legislation.

Disclosure of information requires a patient’s consent. Implied consent to disclosure may be sufficient in the following circumstances.

1. Within members of the healthcare team: Most people understand and accept that information must be shared within the healthcare team in order to provide their care. The wishes of any patient who objects to particular information being shared with others providing care, except where this would put others at risk of death or serious harm, must be respected. In emergency situations, where a patient cannot be informed about the sharing of information, relevant information must be passed promptly to those providing the patient’s care.

2. For purposes of clinical audit: Clinical audit is essential to the provision of good care and all doctors in clinical practice have a duty to participate in clinical audit. Identifiable information may be disclosed for purposes of clinical audit provided the patients have been informed, are aware of their right to object to the disclosure and have not objected. When audits are to be undertaken by another organization, information should be anonymized wherever that is practicable. If not, express consent must be obtained prior to the disclosure of identifiable data.

Express consent must be obtained in the following circumstances:

1. Before the disclosure of identifiable information of purposes such as research, epidemiology, financial audit or administration.

2. Where doctors have contractual obligations to third parties, such as companies or organizations, they must obtain patients’ consent before undertaking any examination or writing a report for that organization and should offer to show patients the report, whether or not this is required by law.

Disclosure in connection with judicial or other statutory proceedings: information must be disclosed to satisfy a specific statutory requirement, such as notification of a known or suspected communicable disease or if ordered to do so by a judge or presiding officer of a court. Patients should be informed about such disclosures, wherever practicable, but their consent is not required.

Disclosure in public interest: personal information may be disclosed in the public interest where the benefits to an individual or to society of the disclosure outweigh the public and the patient’s interest in keeping the information confidential. This ‘public interest’ can be determined only by the courts. Similarly, disclosure to an appropriate person or authority is also justified if disclosure is deemed necessary to protect a third party from death or serious harm, such as child abuse. Such disclosures are permissible without the patient’s consent and in exceptional cases also where patients have withheld consent.

Disclosure in specific circumstances

1. Children and those lacking the capacity to give consent: disclosure of information to relevant authorities is permissible if deemed essential and consent cannot be obtained despite persuasion and involvement of appropriate persons in the consultation. The discussions with the patient, views of an advocate or carer and reasons for deciding to disclose information should be documented in the patient’s notes.

2. Victims of neglect or abuse: if a patient is believed to be a victim of neglect or physical, sexual or emotional abuse and the person withholds consent to disclosure, information must be given promptly to an appropriate responsible person or statutory agency in the patient’s best interest. A decision not to disclose information must be discussed with an experienced colleague and would warrant justification.

3. After a patient’s death: a doctor still has an obligation to keep personal information confidential after a patient dies, especially if the patient had asked for information to remain confidential. Where unaware of any directions from the patients, requests for information should be considered taking into account whether the disclosure may cause distress to or be of benefit to the patient’s partner or family; whether disclosure will in effect disclose information about the patient’s family or others and the purpose of the disclosure. A decision to disclose confidential information could be challenged and may warrant explanation and justification. Breaking bad news

Any information that produces a negative alteration to a person’s expectations about their present and future could be deemed ‘bad news.’ Bad news does of course, have gradations, which to a certain extent are subjective (Fallowfield and Jenkins 2004). In Obstetrics and Gynaecology this could involve a pregnancy loss, the diagnosis of a structural or chromosomal fetal anomaly, the diagnosis of a malignancy or that of an uncorrectable cause of infertility. Breaking sad, bad and difficult news will always be an unpleasant but necessary part of medicine. Bad news communicated badly can cause confusion, long-lasting distress and resentment. If done well, it can assist understanding, acceptance and adjustment.

Breaking bad news in obstetrics

A planned conception is generally associated with months of excitement and anticipation, in the hope of an uneventful pregnancy, a safe delivery and a normal, healthy baby. When things do not follow the anticipated pattern, it becomes distressing to all concerned. Bereavement is extremely traumatic and the providers of maternity care need to ensure support and information for women and their families both during the acute time of the event and continuing throughout the weeks or months afterwards. The standards set by the RCOG (2008b) have been summarized below

1. Care providers should ensure there are comprehensive, culturally sensitive, multidisciplinary policies, services and facilities for the management and support of families (and staff) who have experienced a maternal loss, early or mid-pregnancy loss, stillbirth or neonatal death.

2. Information about the grieving process, support offered by local groups and other agencies as well as details about investigations (including post-mortem), birth and death registration and options for disposal of the body should be available in different languages, with particular cultural beliefs or sensitivities appropriately reflected.

3. Local guidelines must include clear communication pathways between secondary care and the primary care team with both the woman’s GP and community midwife informed of any death within 1 working day

4. There must be a clear and consistent local policy about the sensitive disposal of fetal tissues after early pregnancy loss.

5. Following the death of a baby, results of all investigations, including placental and post-mortem histology should be available within 6 weeks. The woman and her partner should be given the opportunity to meet with the lead obstetrician and/or paediatrician to discuss these results.

Breaking bad news concerning fertility (Lalos 1999)

In society, the ability to conceive is closely related to self-esteem, identity, sexuality and body image. Breaking bad news to infertile couples therefore often means interference in an already vulnerable process. Involuntary childlessness is not a question of once receiving bad news but repeatedly receiving bad news during investigation and treatment. Feelings of shock, surprise, disbelief and denial generally give way to feelings of frustration, anger, loss of control and anxiety and sometimes even to guilt, embarrassment, disappointment, isolation, depression, grief and mourning. Success, in an infertility setting, stands not only for a healthy baby, but also about helping couples to cope with bad news.

Unlike in a general traumatic crisis, in which the duration of the reactive phase is usually approximately 6 weeks, in these cases, new events, new hopes and new forms of bad news result in a state of a prolonged, chronic crisis. Although there are rituals in society to handle loss through death, there are no rituals to deal with lost dreams and future possibilities, such as the dream of a child. One way of coping during the crisis of infertility is to try to hang on to the medical system to get support and comfort. The doctor and the couple in this setting have a common goal and complementary roles and form a relational triangle—a sensitive social system, which in itself is complex and potentially unstable. Nurses and counsellors, in different capacities form new and separate relational triangles with the couple, which in turn could influence the primary doctor–couple triangle. Good teamwork is essential for effective communication with the couple. The following standards have been suggested.

1. Both partners should be involved and addressed during investigations and treatment and the man should not be allowed to feel excluded from the relationship between the doctor and the female partner.

2. Bad news should be brought to both members of the couple, rather than allowing one member to communicate results to another.

3. Specific communication skills on the part of the whole medical staff are desirable especially as the medical language itself can sometimes act as a hindrance to intellectual understanding and a relationship barrier. Doctors should attempt to listen more attentively and to stay quiet after the couple have been given a short and informative summary of the problem. The behaviour of healthcare professionals must vary and adapt according to the responses they get. It is of no use to give more information than the couple ask for or are able to handle.

4. Most couples claim that the most stressful information, the worst bad news, is that of not having a diagnosis. However, doctors must accept that arriving at a diagnosis is not always possible. Also, when medical treatment of infertility fails, it is important to terminate treatment, to avoid protracted suffering by allowing the couple to swing between hope and despair. Reducing stress by effective communication not only increases psychological, social and sexual wellbeing, but also increases fertility.

Breaking bad news in oncology (Fallowfield and Jenkins 2004)

Communication of bad news in Oncology is by far one of the most complex tasks but is frequently thwarted by the pressures of time constraints, together with political imperatives to meet targets and contain costs. Bad news in Oncology could take the form of communicating the diagnosis or recurrence, or discussion of transition from curative treatment to palliative care. It could also involve explaining the need for often complex therapeutic options and their debilitating side-effects and the eventual uncertainty about optimum treatments and dismal prognosis. Patients with cancer expect to be given the diagnosis and prognosis honestly and in simple language, by a doctor who is at the same time, encouraging, hopeful and supportive. The difficulty for most doctors is getting this balance right. Patients’ perceptions of the way in which doctors deliver bad news alter understanding, decisions about treatment and later adjustment. Cancer care is frequently delivered by multidisciplinary teams and therefore demands excellent continuity of communication and awareness about what has been said within the team and between individual team members, patients and families. The importance of clear documentation cannot be overemphasized. A number of guidelines to this effect have been designed, one of which has been described later in this chapter. Obtaining consent

The law relating to consent is evolving and becoming increasingly complex. Guidance on Consent has been recently issued by the GMC (2004, 2008, 2007).

Valid consent: consent is only valid if

1. it is given by a legally competent person

2. it is real (i.e. the patient has been adequately informed)

3. it is given freely.

Expressions of consent

Consent can be either ‘implied’ or ‘express’.

Implied consent: this is generally considered acceptable for minor or routine investigations or treatments, if the doctor is satisfied that the patient understands what one proposes to do and why. An example of this would be a patient rolling up her sleeve to have her blood pressure taken.

Express consent: this could either be oral or written.

Oral consent is generally considered acceptable prior to a routine or gynaecological history taking or examination, and also prior to performing minor procedures like the suturing of an episiotomy or performing a smear test. Oral consent can also be relied on in emergency situations where it may not be possible to obtain a written consent. In these situations, a record of the fact that consent has been given must be made in the medical notes.

Written consent: this is required in cases that involve higher risk, in order that everyone involved understands what was explained and agreed. By law, written consent is required for certain treatments such as fertility treatment, and also if the primary purpose of the investigation or treatment is not to provide clinical care, but rather for research, or if there may be significant consequences for the patient’s employment or social or personal life.

The basic model for obtaining consent

This applies to patients who have capacity to make decisions. It includes the following steps.

• The patient’s condition is assessed taking into account the medical history, views, experience and knowledge

• The doctor uses specialist knowledge, experience, clinical judgement and the patient’s views and understanding of the condition to identify the appropriate investigations and/or treatment that are likely to result in overall benefit for the patient. The doctor explains the options, setting out the potential benefits, risks, burdens and side-effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.

• The doctor provides all relevant information that a patient wants or needs in a balanced way using up-to-date written material, or visual and other aids, if required. Other sources of information and support, including patient information leaflets, advocacy services, expert patient programmes or support groups for people with special needs are sought. Patients with additional needs, such as those with disabilities, are allowed the time and support they need to make a decision. An opportunity is given to ask questions, which are then answered honestly and fully. Patients are made aware that they can change their mind about a decision at any time.

• The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them and decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option. Although no one else can make a decision on behalf of an adult who has capacity, one should accommodate a patient’s wishes if they want another person such as a relative, partner, friend, carer or advocate to be involved in discussion or to help them make decisions. It is important to ensure that all decisions made are voluntary and not under coercion from family, employers, insurers or others.

• Once made, the patient’s decisions must be respected, even if it involves refusal of an investigation or treatment or if the decision seems wrong or irrational.

• If the patient asks for a treatment that a doctor considers inappropriate, the reasons for their request should be sought and explored. If, after discussion, the doctor still considers that the treatment would not benefit the patient, he/she does not have to provide the treatment, but should explain the reasons to the patient, and explain any other available options, including the option to seek a second opinion.

Reviewing decisions

Before beginning treatment, it is important to check that the patient still wants to go ahead. Any new or repeated concerns or questions must be responded to especially if

1. significant time has passed since the initial decision was made

2. there have been material changes in the patient’s condition or in any aspect of the proposed investigation or treatment

3. new information has become available, for example about the risks of treatment or about other treatment options.

Patients must be kept informed about the progress of their treatment and should be able to make decisions at all stages, not just in the initial stage.

The issue of ‘capacity’

Presumption of capacity

One must work on the presumption that every adult patient has the capacity to make decisions about their care and to decide whether to agree to or refuse an examination, investigation or treatment. A patient must only be regarded as lacking capacity once it is clear that, having been given all appropriate help and support, they cannot understand, retain, use or weigh up the information needed to make that decision, or communicate their wishes. One mustn’t assume that a patient lacks capacity to make a decision solely because of age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, apparent inability to communicate, or they make a decision that one disagrees with.

Assessing capacity

A patient’s capacity to make a particular decision must be assessed each time a decision needs to be made. Advice in this regard can be found in the ‘Codes of Practice’ that accompany the Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 2000. If the assessment leaves the patient’s capacity to make a decision in doubt, advice must be sought from others involved in the patient’s care, those close to the patient and colleagues with relevant specialist experience, such as psychiatrists, neurologists or speech and language therapists. If still in doubt, legal advice must be sought with a view to asking a court to determine capacity.

Obtaining consent when an adult lacks capacity

Making decisions about the treatment and care for patients who lack capacity is governed in England and Wales by the Mental Capacity Act 2005 and in Scotland by the Adults with Incapacity (Scotland) Act 2000, which set out the criteria and procedures to be followed in making decisions when patients lack capacity to make decisions. It also grants legal authority to certain people to make decisions on behalf of patients who lack capacity. In Northern Ireland, there is currently no relevant primary legislation and decision-making for patients without capacity is governed by the common law, which requires that decisions must be made in a patient’s best interest. It is important for healthcare professionals to keep up to date and comply with the laws and codes of practice that apply where one works. If unsure about how the law applies in a particular situation, one should consult defence bodies or professional associations, or seek independent legal advice.

While obtaining consent from patients who lack capacity, a doctor must first establish whether this lack of capacity is temporary or permanent. It must be ensured that the care of the patient is his/her first concern, that their dignity is respected and they are not discriminated against. They should be encouraged to be involved as far as they want to and are able to. Consideration must be given to any previously expressed preferences, such as an advance statement or decision and to the views of those appointed to represent them.

Children and young people

The right to human papillomavirus (HPV) vaccination recently attracted much media attention. In the UK the principle of adolescent autonomy is recognized and logically should include the right to choose to be vaccinated (Brabin et al. 2007). However, while some parents disapproved of HPV vaccination without parental consent, some others desired to overrule their children’s decision not to be vaccinated. The GMC, in its recent guidance on 0–18 year olds states the following.

• Those under the age of 18 years should be involved as much as possible in discussions about their care, even if they are not able to make their own decisions.

• A young person’s ability to make decisions depends more on their ability to understand and weigh up options than on their age. At 16, a young person can be presumed to have capacity to make most decisions about their treatment and care. A young person under 16 may have capacity to make decisions, depending on their maturity and ability to understand what is involved.

• Parents cannot override the competent consent of a young person to treatment that is in their best interests. But parental consent can be relied upon when a child lacks the capacity to consent. In Scotland parents cannot authorize treatment a competent young person has refused. In England, Wales and Northern Ireland, the law is complex. Legal advice is best sought when a young person refuses treatment that is clearly in his/her best interest. Improving communication skills

Education and training for doctors (Alder 2007; Harlak et al. 2008)

Communication is a non-predictable activity and although communication skills can be developed, they have not been shown to improve from mere experience. The recognition that these skills can be developed and/or improved through training and through continuing medical education has resulted in the development of numerous courses and programmes. The Lipkin Model used in Oncology has been shown to significantly alter and improve oncologists’ communication skills while also significantly altering attitudes and beliefs about the importance of psychosocial issues and communicating well. The improvement in skills was still evident 12 months later, despite no further intervention. However, there is little evidence to suggest that most of the other available courses lead to any improvement that successfully transfer into practice, or that any measurable improvements are sustained over time. In fact, the specific communicative demands in women’s healthcare have yet to be clearly defined and operationalized. The need to teach medical students to communicate clearly, sensitively and effectively through well-designed courses that are resource intensive and expensive is probably necessary and even urgent.

Patient involvement (Leite et al. 2005; Alder et al. 2007 Harlak et al. 2008)

• Patients could be previously prepared for visits so that they would come armed with information and questions.

• Clearly written educational material, illustrated aids, or even a video, all matching the patient’s literacy level, could be tentative strategies to encourage the individual to have a more active role in the consultation and not to leave the office with unanswered questions.

• New technologies for education and communication could be used in the waiting room, before the visit, to provide guidance and to teach patients how to explain their problem clearly, to ask questions, seek clarification and make sure they understood what had been communicated.

Such initiatives could serve as starting points for improving physician–patient interaction. Further reading

Alder J, Christen R, Zemp E, Bitzer J. Communication skills training in obstetrics and gynaecology: whom should we train? A randomized controlled trial. Arch Gynecol Obstet 2007;276:605–12.

Brabin L, Roberts SA, Kitchener HC. A semi-qualitative study of attitudes to vaccinating adolescents against human papillomavirus without parental consent. BMC Public Health 2007;7:20.

Brown SJ, Davey MA, Bruinsma FJ. Women’s views and experiences of postnatal hospital care in the Victorian Survey of Recent Mothers 2000. Midwifery 2005;21:109–26.

Christen RN, Alder J, Bitzer J. Gender differences in physicians’ communicative skills and their influence on patient satisfaction in gynaecological outpatient consultations. Soc Sci Med 2008;66:1474–83.

Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004;363:312–9.

General Medical Council (GMC). Confidentiality: protecting and providing information—Frequently asked questions. London: GMC 2004.

GMC. 0–18 years: Guidance for all doctors. London: GMC 2007.

GMC. Consent: patients and doctors making decisions together. London: GMC 2008.

GMC Confidentiality guidance. GMC Today. 2008;21 (Sept/Oct 2008).

Harlak H, Gemalmaz A, Gurel FS, et al. communication skills training: effects on attitudes toward communication skills and empathic tendency. Educ Health 2008;21:62.

Lalos A. Breaking bad news concerning fertility. Hum Reprod 1999;14:581–5.

Leite RC, Makuch MY, Petta CA, Morais SS. Women’s satisfaction with physicians’ communication skills during an infertility consultation. Patient Educ Couns 2005;59:38–45.

Royal College of Obstetricians and Gynaecologists (RCOG). Standards for gynaecology: report of a working party. London: RCOG 2008a.

RCOG. Standards for maternity care: report of a working party. London: RCOG 2008b.

Tsai WC, Kung PT, Chiang YJ. Relationship between malpractice claims and medical care quality. Int J Health Care Qual Assur Inc Leadersh Health Serv 2004;17:394–400.