Concealing serious diagnoses

Across a range of countries, concealing serious diagnoses is common. In Greece, 90% of doctors would not reveal a new cancer diagnosis to a patient7 and in China, 62.1% of patients do not know their cancer diagnosis before starting chemotherapy.8 Diagnostic non-disclosure usually occurs after a request from the patient’s family.9 A commonly stated reason is the need to reduce psychological distress.10 There is a belief that if a patient is able to maintain hope, they are more likely to recover.10

Fears about the negative impact of diagnostic disclosure have, however, been discredited. Surveys repeatedly show that patients do want to know their diagnoses, ranging from 69.3% in China11 to 95% in Nigeria.12 Patients who know their diagnoses have fewer physical symptoms13 with no change in mortality.14 There is a reduction in psychological stress,15 symptoms of anxiety and symptoms of depression.8 Diagnostic disclosure shapes the patient’s trajectory. Patients who are able to make informed decisions about their treatment often opt for a less invasive approach with an emphasis on symptom control.16 Moreover, diagnostic non-disclosure is rarely successful; the majority of patients eventually find out their diagnosis, often in a less supportive context.17 The suffering created by concealing diagnoses is not limited to the patients: Beng highlights the psychological distress experienced by patients’ relatives1 and Ong et al raise the impact of moral distress and emotional exhaustion on the medical team.18

The approach to breaking bad news cannot be rigid. Not all patients want to be informed. Many patient groups, such as the very young and those with cognitive impairment, would be unable to understand the information given to them. Also, context matters: few clinicians would tell a peri-arrest patient they are probably about to die. Interestingly, the UK legal framework does support diagnostic non-disclosure in extraordinary circumstances, where revealing specific information would cause ‘serious detriment to the patient’s health’; this is termed the ‘therapeutic exception’.6 However, this tenet ‘must not be abused’ and is rarely employed.6 In the USA, it would breach the HIPAA privacy rule.19 The decision to disclose a diagnosis is not binary, but can be staged, offering varying levels of disclosure.20 We all sit somewhere on a spectrum: we adapt our approach to the context and the patient.21

Why does diagnostic non-disclosure persist?

In spite of evidence to support diagnostic disclosure, in many settings serious diagnoses are routinely concealed. Misperceptions regarding the impact of diagnostic disclosure are widespread. Even when doctors believe that telling patients is the right things to do, they are not always able to act on that conviction. In Italy, 45% of doctors thought that patients should always be informed of their diagnosis, but only 25% did this in practice.22 Workload, lack of privacy, lack of access to investigations, lower staffing levels, lack of training in communication skills and the absence of formal guidelines or legal frameworks all act as barriers.23 24 In reality, healthcare professionals find breaking bad news stressful,25 so it is not surprising that many doctors prefer to disclose bad news to close relatives as opposed to the patient. A further challenge is that the phenomenon of diagnostic non-disclosure, although well recognised, has no unifying terminology. It is often not overtly discussed, resulting in the development of ‘unwritten rules’.4 A key step forward is to articulate when non-disclosure has been requested and acknowledge its implications.26

Western ethics unequivocally tells us that disclosing serious diagnoses is the right thing to do, a view underpinned by the principles of autonomy, beneficence and non-maleficence.27 The act of perpetuating a lie can create a crisis of conscience and lead to healthcare workers’ psychological exhaustion.18 However, it should be recognised that the West is unique in its emphasis on autonomy and truth over harmony.27 28 In other cultures, different actions are considered ethical. For example, ‘care ethics’ resonates with non-disclosure in the Indian state of Tamil Nadu, where patients knew that their diagnoses had been concealed and felt that this act demonstrated familial love and medical professionalism.29 An ethics of duty, based on filial piety, can be found in eastern cultures influenced by Confucianism.30 Exposing sick relatives to distressing information fails to meet such ethics of duty and can lead to a ‘loss of face’. By contrast, those in the Western world may inform the dying of their prognosis, but fail to facilitate personal or community care.

In cultures where non-disclosure occurs, there is a disconnect between people’s wishes for themselves and for others. As patients, people want to know their diagnosis; as caregivers, they want to protect their relatives from distress. In China, 85% of patients but only 18% of caregivers felt that a cancer diagnosis should be disclosed to a patient.31 The source of this disconnect is not clear. Cultural values and understanding are evolving and our preference for disclosure in the West became mainstream only recently.18 32 It is possible that part of the cultural dilemma is a delay between a change in individual attitudes, which are increasingly westernised, and long established cultural expectations.

Internationally, patients’ predominant desire to know their diagnoses has been established, but patients in the West are unique in the extent of their fear of dependence and loss of self-determination.33 In the context of closer familial relationships outside the cultural West, patients’ values and fears are understandably different and receiving care from and being dependent on others is more accepted. Diagnostic non-disclosure occurs more often in societies which prioritise collectivism over individualism, and which employ a more paternalistic approach to healthcare decision-making.34 On a practical note, where decision-making is made with the family as a whole and the patient’s family delivers the bulk of their support, dismissing the family’s requests for non-disclosure may create familial disharmony which jeopardises the patient’s care.35

Gradual progression towards individualism and patient empowerment, with decreasing practice of diagnostic non-disclosure, may be inevitable.18 We need to be careful that, in supporting this evolution, what is of value in other cultures is not lost. Recommending change as an outsider is always hazardous and is the antithesis of cultural humility. We need to recognise that we cannot achieve full contextual understanding. Claiming cultural superiority in the West and imposing our values on other cultures has an ignoble past. A first step towards cultural humility is to recognise that our stance in the West has its own biases, so that we can begin to release ourselves from our own cultural encapsulation,36 Our culture is far from perfect. On community, care and compassion, we have much to learn.37

How can we make progress?

Several strategies have been suggested to support clinicians facing the specific cultural dilemma of diagnostic non-disclosure.1 18 26 Beng recommends avoiding the situation entirely by consulting the patient first. If this cannot be achieved, a multi-step approach to deescalating any potential conflict is recommended.1 Low et al have developed a flowchart, which enlists empathy, exploration, grief counselling, reassurance and information pamphlets to the end goal of overcoming the family’s reservations.26 Ong et al suggest a strategy for all ethical dilemmas: identify the issue, clarify values, clarify barriers and act.18

Our approach builds on these strategies and takes them further, in providing a mnemonic communication tool, permitting more than one outcome, and focusing on the need for mutual understanding and cooperation. The primary intention of the mnemonic ‘ARCHES’ is to facilitate communication when a family requests diagnostic non-disclosure. However, in settings where diagnostic non-disclosure is a norm, the family may automatically assume the clinician will conceal the diagnosis from the patient. Clinicians in these settings may choose to use our ARCHES model as a pre-emptive conversation. If the family tries to stop the physician while he or she is breaking bad news to the patient and family, even though the patient has given their consent, the ARCHES model could be used for conflict resolution.

The gold standard in the cultural West is to approach breaking bad news by speaking to the patient and their family together using a breaking bad news tool such as the mnemonic ‘SPIKES’.38 Our mnemonic tool, ‘ARCHES’, is intended to take place prior to ‘SPIKES’, in situations where the family has requested diagnostic non-disclosure. It provides a strategy for appreciating the family’s standpoint, affirming their benevolent intentions and correcting misperceptions. During this conversation, it is essential we maintain the patient’s confidentiality and uphold their right to knowledge. Table 1 shows an example case scenario and suggested discussion applying the ARCHES framework.

ARCHES mnemonic

A—Acknowledge the request for non-disclosure.

A significant barrier to tackling diagnostic non-disclosure is that the dilemma is often left unvoiced. Non-disclosure can occur as a default, without conscious reflection. Strategies in the existing literature highlight the need to address the issue head-on.26

R—Build the Relationship between the clinician and the family, clarifying values.

Mutual understanding is key to cooperation. We as clinicians need to understand the family’s fears so that we can reassure them. We need to appreciate the patient’s values and individual characteristics so that these can be taken into consideration.18 Furthermore, the process of active listening and of seeking deeper understanding creates trust.

C—Find Common ground.

After understanding each other’s perspective, we need to identify shared goals and values. When facing cultural dilemmas in obstetrics, searching for common ground has proved an effective strategy.39 Typical shared goals would include optimising the patient’s mental and physical health and maintaining positive family relationships.

H—Honour the patient’s information preferences; outline Harm of non-disclosure

Having gained understanding of the family’s position, the clinician can move on to making them aware of the benefits of informing the patient and the need to honour the patient’s information preferences, alongside the harm to the patient and the burden to the family of non-disclosure.1

E—Provide Emotional support and respond to concerns.

We need to reassure the family that delivery of the news will be sensitive. The patient will not be forced to hear the news, only offered the information. Patients can always choose not to know their diagnosis and their permission is sought.38 We need to acknowledge and support the family’s emotions.

S—Devise a supportive Solution

We can then reach a consensus on the best way forward. Whether this communication is carried out by the clinician or by the family with a physician’s support can be flexible.26 We need to establish in advance what we will do if the family insists, against our professional judgement, that the patient not be told. In this scenario, our approach will depend on our cultural and legal setting. In the UK, in all but exceptional circumstances the patient’s preference for knowledge overrides the family’s request. Following ARCHES, it is hoped the clinician will be able to break the bad news to the patient and their family using SPIKES.