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Clinical Practice Guidelines on Breaking Bad News

2023; Medknow; Volume: 65; Issue: 2 Linguagem: Inglês

10.4103/indianjpsychiatry.indianjpsychiatry_498_22

1998-3794

Sujit Sarkhel, Vinay Kumar,

Patient Dignity and Privacy

INTRODUCTION The most commonly used definition of bad news pertaining to medical settings is, “any information, which adversely and seriously affects an individual’s view of his or her future.”[1] Some of the common examples of bad news in medical settings include—A person is informed that he has tested positive for HIV, the wife is informed that her husband has been diagnosed with Alzheimer’s dementia, a patient is told that his lump has been diagnosed as cancer. Thus, bad news is a message which has a negative connotation and has the capability to alter the recipient’s hope, mental well-being, and upset his lifestyle. EPIDEMIOLOGY Gautam and Nijhawan[2] carried out a prospective study on 100 cancer points in India to find out if the diagnosis of cancer needs to be communicated to patients and their caregivers. They found out that most of the patients who knew about their condition (71%) wanted to be told the truth. The picture was similar in case of relatives who wanted that they should be told the diagnosis (81%) but their patients should not be disclosed the same (77%). In a study conducted among faculty and residents of Guilan University of Medical Sciences in Iran, only 13.6% of the participants were found to be trained in delivering bad news.[3] In another study carried out on 226 patients with cancer in Poland, it was found that the diagnosis was told to most of them as per steps laid down in the SPIKES protocol of breaking bad news.[4] IMPLICATIONS OF BREAKING BAD NEWS Breaking bad news is an art wherein the physician has to strike a fine balance between truth and hope and handle the emotional outcomes of the news on the recipients as well. There are ethical and medicolegal implications of breaking bad news which means that withholding vital information in terms of diagnosis and prognosis from the patient on the presumption that he will not be able to “handle” it may not always be justified in terms of the patient’s autonomy and “right to know.” Similarly, insensible pouring out of bad news with disregard for its emotional consequences on the patient may not be good for the mental health of the patient and the therapeutic relationship between the patient and the doctor. The technique employed in breaking bad news can influence to what extent they understand the information, to what extent they are satisfied with the care, and over and above all, to what extent they can adjust psychologically to the bad news.[5] WHAT ARE THE BARRIERS TO BREAKING BAD NEWS? Breaking bad news can take a heavy emotional toll on the doctor, he often feels burdened by negative news and anticipates negative reactions. The common barriers to breaking bad news are presented in Table 1:[6]Table 1: Common barriers to breaking bad news[ 6 ]WHAT ARE THE GOALS OF BREAKING BAD NEWS?[7,8] The basic goals of breaking bad news are summarized in Table 2.Table 2: Goals of breaking bad newsWHO SHOULD BREAK BAD NEWS? The head of the unit or a senior consultant who is known to the patient and family members should deliver the bad news. A senior member of the nursing staff may need to be called to break the bad news in certain emergencies where the treating consultants may be absent. Dos and Don’ts for breaking bad news are summarized in Table 3.[9]Table 3: Dos and don’ts for breaking bad newsVARIOUS PROTOCOLS FOR BREAKING BAD NEWS Over the years, various clinicians have developed separate protocols for delivering bad news. The SPIKES protocol[8] is the oldest and most commonly used worldwide [Table 4]. Subsequently, clinicians have modified this protocol to add certain steps which they felt were essential. For example, in 2005, a modified version, P-SPIKES was published,[10] where “P” stands for “Preparation” which includes reviewing all information about the patient that needs to be communicated and rehearsing them if necessary. Another criticism of this protocol is that it does not have a step on patient questions and clarifications. Another recent modification, SPwICES[11] includes “w” which deals specifically with “warning shot” and “ICE” which involves juggling with providing information, clarifying, and dealing with emotions. Other popular protocols include the ABCDE protocol [Table 5],[7] Kaye’s 10-step model[12] [Table 6], and BREAKS protocol [Table 7].[13] All these protocols have traditionally been devised by oncologists. Hence, in subsequent years, other specialists, including surgeons and emergency physicians, have come up with their own modified protocols. The PEWTER protocol [Table 8][14] has been devised for emergency physicians. Similarly, the SUNBURN protocol [Table 9][15] has been developed to suit the purpose of trauma and acute care surgeons. A simple step-by-step method is outlined in Table 10 which incorporates the essential elements of breaking bad news and has been incorporated more or less in every established protocol on breaking bad news. This method is simple and can be easily adopted by all clinicians. Otherwise, any of SPIKES, ABCDE, Kaye’s model, or BRAKES protocol may be used.Table 4: The SPIKES protocol[ 8 ]Table 5: The ABCDE protocol[ 7 ]Table 6: Kaye’s 10 step model[ 12 ]Table 7: BREAKS protocol[ 13 ]Table 8: PEWTER model[ 14 ]Table 9: SUNBURN protocol[ 15 ]Table 10: Simple step-by-step protocol for communicating bad news[ 16 ]DOCUMENTATION Documentation is very essential in breaking bad news—the detailed conversation, what was the information that was exchanged between the two parties, all these may be noted down properly. Detailed notes may be maintained in the patient’s files. The most important points to be kept in mind during documentation include the diagnosis, various options that were discussed regarding future management, and the exact words and expressions that were used while breaking the bad news. Maintaining accurate records will help in communicating with the treating team and facilitate proper follow-up care of the patient. BREAKING BAD NEWS OVER TELEPHONE[17] While it is generally advised to break bad news through face-to-face interactions, the exceptional challenge posed by the pandemic forced all nations to make newer adjustments, including breaking bad news over the telephone. Things to be kept in mind during a phone call: TONE & PITCH Ensure your tone captures the seriousness of what you are telling the patient Note the patient’s tone and pitch as that may indicate how the patient is feeling. LANGUAGE Use “we” or “the team” as opposed to “I,” to help them to feel like the family member is managed by a team. Keep it simple and use clear, direct language. If the patient is emotionally overwhelmed, he will not be able to process complex information. UNDERSTANDING One must find out to what extent the patient and his/her caregiver have understood the information conveyed by the team The patient/carers must get adequate opportunities to ask questions and clarify doubts Before delivering the news over the phone, the doctor must find out where is the person at the time of receiving the call. He must find out whether the person is in a position to take up an uninterrupted conversation. It is also important to find out whether there is anyone around for emotional support. One must have an empathetic tone of voice during conversation. Pauses and silence in the conversation has to be used effectively Socio-demographic background of the patient/caregivers must be kept in mind while delivering bad news. ROLE OF PSYCHIATRISTS IN BREAKING BAD NEWS Many physicians consider that psychiatrists are best suited for breaking bad news since they are better at handling emotions as well as more effective in communication skills. The role of a psychiatrist becomes much more important in a consultation-liaison setup in this respect. Breaking bad news can be encountered by psychiatrists themselves while disclosing the diagnosis and prognosis of disorders like dementia, intellectual disability, and an autistic spectrum disorder. There are many similarities between medical and psychiatric settings in terms of breaking bad news [Table 11]. However, certain issues may create roadblocks like the patient’s understanding of the information being conveyed which may be affected by existing psychopathology or cognitive deficits and the long-term consequences of the stigma associated with mental illness. Psychiatrists should play a leading role in teaching communication skills and skills in breaking bad news to their fellow colleagues in other disciplines.Table 11: Similarities in breaking bad news in medical and psychiatric settings[ 18 ]BREAKING BAD NEWS IN PSYCHIATRIC CONDITIONS Diagnostic disclosure has been a problem area in various psychiatric disorders, especially psychoses. Studies conducted toward the end of the last century reported low rates of disclosure of diagnosis for both schizophrenia and other psychiatric conditions (30–65%). In contrast, studies conducted in the last two decades reported higher rates of disclosure of psychiatric diagnoses for various psychiatric disorders (77–88%). In western studies, however, the diagnosis was discussed to a much lesser extent if the patient belonged to the immigrant community (22%). The most important factor determining diagnostic disclosure is the nature of the diagnosis—schizophrenia was disclosed much less often (7–59%) in comparison to other diagnoses like depression (71–98%), bipolar disorder (61–96%), or anxiety-related disorders (58–96%).[19] Schizophrenia was frequently replaced by alternative terminology like “psychosis,” “severe mental illness,” and “chemical imbalance.” Findings from most of the studies have revealed that discussing the mental health condition led to better outcomes in terms of satisfaction among patients and caregivers; the negative effect of stigma has been reported in some studies. Overall, the evidence has been overwhelmingly in favor of disclosure. BREAKING BAD NEWS TO PATIENTS WITH PSYCHIATRIC CONDITIONS: A PROPOSED MODEL Certain psychiatric diagnoses, particularly schizophrenia, involve many complex issues while conveying the diagnosis to the patient and significant others. The patients lack insight and cognitive capacity, especially during the initial phase of the illness, which may interfere with their ability to understand the diagnosis and long-term treatment implications. The stigma associated with psychiatric diagnoses, especially schizophrenia, is another issue that often deters clinicians from discussing the diagnosis with the patients and caregivers. Keeping in mind all these complexities, psychiatrists have a tendency to withhold information related to diagnosis. One study examining the implementation of the SPIKES protocol in breaking bad news to patients with schizophrenia[20] found that rates of implementation of this protocol were very low among psychiatrists despite studies, showing that psychiatric patients want to know and should be informed about the diagnosis. The authors concluded that the SPIKES protocol is applicable for breaking bad news to patients with schizophrenia though the role of the family while breaking the news and during shared decision making was emphasized.[20] Researchers have reviewed the available literature and concluded that the SPIKES protocol may be applied for delivering the diagnosis of schizophrenia although certain modifications were necessary, especially regarding the inclusion of family members, demystifying the diagnosis and treatment process through proper psychoeducation and instilling hope, and most importantly, addressing stigma.[21] Another model has been proposed by Levin et al.[22] for delivering the diagnosis of schizophrenia to patients and caregivers [Table 12]. We propose a protocol suitable for breaking bad news to patients and their significant others regarding psychiatric diagnoses of all types, including severe mental illnesses like schizophrenia, bipolar disorder, severe depression with psychotic symptoms, catatonic syndrome as well as neurodevelopmental disorders like attention-deficit hyperactivity disorder, intellectual developmental disorder, and autistic spectrum disorder [Table 13]. The model is derived from all essential elements that are common to various protocols for breaking bad news. Since families are an essential part of breaking bad news in the context of psychiatric diagnoses, the involvement and role of family members and significant others have been specifically emphasized in a separate step. Our model has also incorporated patient and caregiver perspectives that have emerged from the available research on delivering information related to psychiatric diagnosis. This includes open sharing of information, instilling realistic hope of future recovery, stigma reduction, recognizing the changing nature of the diagnosis, and providing adequate psychoeducation. The steps can be easily remembered by the acronym—ASKS WIVES.Table 12: A practitioner’s model for communicating a diagnosis of schizophrenia[ 22 ]Table 13: The proposed model for breaking bad news to patients with psychiatric diagnoses (ASKS WIVES)HOW TO APPLY THE MODEL IN VARIOUS SITUATIONS In our proposed model, involving significant others has been mentioned in Step 4. However, in certain situations like acute schizophrenia, mania, severe psychotic depression, catatonia, or advanced stages of dementia, it may not be possible to convey the information to the patient. In such cases, the involvement of significant others should begin from step 1 and proceed accordingly. The choice of significant others would also not depend on the patient’s consent but on the judgment of the treating team. These conditions apply to situations where the judgment of the patient is severely impaired as laid down in the Madrid Declaration.[23] The timing of disclosure of diagnosis is an important consideration. In the acute stage of a severe mental illness, the patient may not be in a position to understand or discuss the diagnosis or treatment issues. In the preliminary stages, the diagnosis is often provisional in nature and may change over time. Both these factors should be kept in mind when planning to communicate with patients or caregivers at the initial stages. The caregivers may be involved in the initial stages and discussion may include the provisional nature of the diagnosis with a mention that it may change over a period of time. As the team reaches a confirmed diagnosis over a period of time, the team may sit down with the caregivers as well as the patient who may have settled down by that time.[24] In the case of Alzheimer’s disease, there is general consensus about disclosure. However, one has to determine when and how to disclose. The general consensus is on disclosing to the patient in the presence of family members/caregivers. This disclosure should be done as early as possible after a diagnosis has been established. Apart from diagnosis, the disclosure should involve available support, care, and long-term planning. The physician should give accurate and reliable information, using simple language. It should also be clearly explained that a properly planned and organized family network can reduce the burden on the primary caregiver and maintain quality of life as far as possible.[25] There are certain situations where the diagnosis may not be disclosed (may be temporarily) to the patient: (1) severe dementia where the patient is not likely to be able to understand the diagnosis, (2) when there is a phobia about the condition, or (3) when the patient is severely depressed.[23] There is no specific recommendation regarding how or whether to convey a diagnosis of mild cognitive impairment or probable dementia. On the one hand, there is a concern for patient autonomy, and his right to know and take necessary interventions. On the other hand, a full disclosure of such a state where there is a lack of certainty regarding progression to dementia may lead to serious psychiatric issues including suicidality. In such cases, the psychiatrist may use his own judgment keeping “therapeutic privilege” in mind. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.