(ADAPTED FROM VINCENT, 2001)

Mrs Long suffered a series of avoidable surgical complications over a period of several months which left her in considerable pain. Traumatic experiences, chronic pain and physical weakness combined to produce a serious depression which lasted several years. The depression was marked by classical symptoms of low mood, tiredness, fatigue, low self esteem and sleep disturbance – but nevertheless unnoticed by any of the health professionals involved in her care. There were many problems with her surgical treatment and care on the wards. However, her problems were compounded by the lack of explanation or apology, a lack of interest or response from the hospital where all the problems occurred and a complete failure of anyone involved in her care to realize how deeply she had been affected (Vincent, 2001). This is the ‘second trauma’ following the original injury.

Many of the symptoms and experiences reported by Mr Carter are common in any bereavement. Depression, distressing memories, feelings of anger and dreams of the person who has died are not unusual. However, the intensity, character and duration of Mr Carter’s reaction indicate that this was far from an ordinary bereavement. Anger of that intensity and violent daydreams are not usual and suggested, together with his other symptoms, that he was suffering from post-traumatic stress disorder. The staff of the paediatric unit clearly tried to help Mr and Mrs Carter, although they did not seem to understand the extent of his suffering and did not ask about traumatic reactions. Given the strength of Mr Carter’s emotional reaction, it would probably still have been very difficult for him to accept an explanation early on, even if the death had been unavoidable. The necessary explanation would have to have been given gradually, over several meetings, and combined with some attempts to support him and ease the intensity of his reaction (Vincent, 2001).

What do injured patients need?

Imagine that you or your husband, mother orchild has, inexplicably, suffered a medical injury. What would you want? Well, I imagine you would want to know what happened, you would want an apology, you would want to be looked after and, later on, you might want steps to be taken to prevent such things happening again to anyone else. If the injury led to you being off work or unable to care for your children, you would certainly appreciate some financial support to help you during the recovery period. If the person concerned was not going to recover, then long-term support would be needed. In an early study of the reasons for litigation, my colleagues and I found exactly this; people wanted an explanation, an apology, preventative action and, in some but not all cases, compensation. Most wanted the clinicians concerned to realize what they were experiencing; feeling ignored or not heard was a particularly painful and intensely frustrating experience, which potentially delayed recovery and adjustment (Vincent, Young and Phillips, 1994). As one patient said to me, ‘If only I had been told honestly I could have faced it so much better.’

All this seems pretty obvious when one reflects for a moment on what one might want oneself. Yet most healthcare organizations have proved, in the past at least, extraordinarily bad at dealing with injured patients, resorting at times, particularly during litigation, to deeply unpleasant tactics of delay and manipulation which seriously compounded the initial problems. My phrase ‘second trauma’ is not just a linguistic device, but an accurate description of what some patients experience.

Every injured patient has their own particular problems and needs. Some will require a great deal of professional help, while others will prefer to rely on family and friends. Some will primarily require remedial medical treatment, while in others the psychological effects will be to the fore. In the short term, the two most important principles are to believe the patient and to be as honest and open as possible, which means that the error or harm must be disclosed to the patient and their family.

Being open: patients’ and physicians’ attitudes to disclosing error

Acknowledging that an adverse event has occurred can be hard and facing up to an injured patient or bereaved family can be even harder. But the alternative scenario of silence and abandonment is worse: for patients, their families and their health professionals. (BISMARK AND PATERSON, 2005)

A patient harmed by treatment poses acute and painful dilemmas for the staff involved, as Bismark and Paterson describe (2005). It is natural to avoid that pain by avoiding the patient, yet the staff’s response is crucial to the patient’s recovery. When patients think that information is being concealed from them, or that they are being dismissed as troublemakers, it is much more difficult for them to cope with the injury. A poor explanation fuels their anger, may affect the course of their recovery and may lead patients to distrust the staff caring for them. They may then avoid having further treatment – which in most cases they very much need. In contrast, an honest explanation and a promise to continue treatment may enhance the patient’s trust and strengthen the relationship.

The ethics of open disclosure of errors are crystal clear and expressed in many clinical codes of ethics. Here is an example from the American Medical Association:

Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions. Situations occasionally occur in which a patient suffers significant medical complications that may have resulted from the physician’s mistake or judgement. In these situations the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred.
(REPRINTED WITH PERMISSION FROM AMERICAN MEDICAL ASSOCIATION)

While the principle of being honest and open is hard to disagree with, in practice a host of questions immediately arise. Should everything be disclosed, even minor errors with no consequences? Should all serious injuries be disclosed, even when knowing about the damage will make no material difference to the patient or family? Will patients become unduly anxious once they know how frequently errors occur? These are all reasonable questions which are beginning to be systematically explored.

Both focus groups and surveys of patients, whether or not they have experienced errors, have found that the great majority would like to be informed of any error; most would like to know immediately, though about a quarter preferredtowait until the full picture is known (Hobgood et al., 2002). Most patients are strongly of the view that they wanted to be told about all harmful errors, and to know what happened, how it happened, how it would be mitigated and what will be done to prevent recurrence (Gallagher et al., 2003). A number of studies have presented patients with hypothetical scenarios, depicting errors with different degrees of associated harm and with varying reactions from the clinicians concerned. The manner and speed of disclosure of the error is a powerful determinant of patients’ response, with slow or inadequate disclosure leading to more negative ratings of the care provided, their attitudes to the clinicians concerned and the reputation of the hospital (Cleopas et al., 2006). Failing to disclose also makes it more likely that the patient would seek to change doctors and, in some cases, increases the likelihood of complaint or litigation. Studies of obstetricians with high levels of litigation, compared with colleagues, suggests that those with litigation histories are distinguished not by the quality of their care, but by different attitudes, insensitivity and poorer communication skills (Entman et al., 1994; Hickson et al., 1994). Conversely, a positive, empathic response, in which responsibility is accepted, maintains trust and respect and reduces the wish for disciplinary action (Schwappach and Koeck, 2004; Mazor et al., 2006).

Doctors as a group tend to underestimate the information that patients would like about errors and adverse outcomes. This might be a genuine difference of view, but is possibly also due to the clinicians’ appreciation of the nuances and practical aspects of disclosure. Inone focus group study, the physicians who took part agreed that harmful errors should be disclosed, but were generally more circumspect in the language they used. Often this simply meant speaking truthfully and very factually about what had occurred, without using the word error. ‘You were given too much insulin. Your blood sugar was lowered and that’s how you arrived in the intensive care unit…’ (Gallagher et al., 2003 p. 1004). If the patient wanted to know more, they would go on to explain how the problem had arisen. Opinions in both groups were more varied when near misses were considered, some patients and many physicians thinking it would make patients unduly fearful and lead to unnecessary loss of trust.

Open disclosure: policy and practice

Hospitals and other healthcare organizations are beginning to take their disclosure responsibilities seriously and risk managers and clinicians are beginning to follow up injured patients and consider their longer-term needs. Although the task of dealing with adverse outcomes falls mainly on individual clinicians, they need to be backed by those senior to them and by the organization as a whole. Successful handling of adverse outcomes relies on the sensitivity and courage of individual clinicians and risk managers, but also requires a commitment to certain basic principles at the highest level of the organization. All healthcare organizations need a strong proactive policy of active intervention and monitoring of those patients whose treatment has caused harm. It is quite unrealistic, indeed unfair, to expect openness and honesty from individuals without the backing of a policy of honesty and openness approved by the governing body of the organization concerned.

Open disclosure policies have been increasingly adopted in a number of countries. In the United States, JCAHO mandated open disclosure as part of its accreditation policiesin 2001 but, one year later, only a third of its hospitals had a policy in place and there was still considerable reluctance to disclose preventable, as opposed to unpreventable, harm (Lamb et al., 2003); however, by 2005 this figure had increased to 69% (Gallagher, Studdert and Levin-son, 2007). The British National Patient Safety Agency has a comprehensive ‘Being Open’ policy which, while not mandatory, is a strong stimulus for healthcare organizations to proactively promote such policies. The Canadian Patient Safety Institute has produced guidelines and several Canadian states have enacted apology legislation (Silversides, 2009). Open disclosure is moving slowly from a rarely practiced ideal towards being standard organizational policy.

One of the most impressive approaches has been that of the Australian Safety and Quality Council, which has produced a standard information sheet for patients (Box 9.3) and now educational and training materials for staff. The open disclosure standard set out by the Safety and Quality council is thoughtful and wide ranging. Many key themes have been built in: a commitment to openness, support over time, letting patients know the results of investigations, telling them what will be done to prevent future incidents and so on. Notice especially that open disclosure is spoken of as a process, not a one-off event. From the case histories at the beginning of the chapter, we can see that serious incidents may have a long time course to resolution. Even less serious incidents may require more than one meeting and some ongoing contact; in the first meeting, patients may be too shocked to take much in, coming back later, having thought things over, to ask more questions.

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