Understanding “breaking bad news” Clare Warnock Practice development sister WPH

What is breaking bad news How would you describe breaking bad news Who does it What is bad news

What is breaking bad news Traditional view the moment when a doctor provides significant information about diagnosis, prognosis or treatment to patients and their families in a one to one consultation the role of the HCP is to be present as a witness to what has been said and providing support once the consultation is over “Modern view” A wide range of HCPs are involved in BBN Other information can be classified as bad news BBN is a process There may be multiple episodes of information provision often “ad hoc” and not part of a pre-planned consultation It also includes activities that take place before, during and after bad news is given

Popular definition any bad, sad or significant information that negatively alters a person’s expectation or perception of their present or future (Fallowfield and Jenkins 2004) Key items ANY information Individual expectation Individual perception

What do you think could classify as bad news Examples informing relatives of a patient’s deterioration or death, advising a patient that they need to move into a residential home, explaining the details of arduous treatment such as renal dialysis or chemotherapy, providing daily updates to family members when a patient’s condition is not improving explaining transitions in care for example from curative to palliative to end of life failed discharge plans Telling someone they can’t drive any more

What is bad news – it depends! the same information could be interpreted as good, bad or neutral by different people influenced by subjective factors patient’s expectations, values, life experiences and social situation the events leading up to and surrounding the moment that the information is given How might different people react to being told they need to have surgery?

Breaking bad news as a process BBN is not about a single consultation Dewar’s early work in spinal injury unit Initial moment Followed by multiple episodes of potential bad news Realising the implications of spinal injury over time It also involves the activities that take place before, during and after bad news is given

What activities are carried out around bad news? Assessing the needs of patients and relatives for further information; recognising their cues and prompts Working with the patient and family to achieve consensus when there are issues about who should be informed Identifying and prioritising the patient’s preferences for information Liaising with the appropriate members of the healthcare team to initiate discussions where the need is identified or requested Coaching and supporting patients and relatives who find it difficult to ask questions or talk to the doctors

Other activities around BBN Helping patients ask questions when they appear to be confused or reluctant to do so Supporting others who are providing the information to find alternative words or explanations if the patient appears not to understand or needs clarification Communicating what has been said in the consultation to the rest of the healthcare team Eliciting patient and relatives’ feelings about the information they have received Listening to and acknowledging the emotional reactions of patients and relatives to bad news Explaining and discussing the information received and its implications

Other activities around BBN? Answering questions as they arise, identifying and clarifying misunderstanding and explaining complex medical terminology Providing information about the next steps in the care pathway Helping the patient and relatives make decisions about care Helping patients and relatives address complex issues e.g. what is meant by DNAR, informed consent, advanced care directives Supporting patients and relatives when they realise the implications of their situation or the information they have been given Helping the family reach a consensus when there is disagreement between them about the plan of care Acting as an intermediary between patients, relatives and the healthcare team

Why is BBN important? Patient preference – research consistently shows Most patients want to be informed variations in the depth and level of knowledge desired  Other potential positive outcomes building a sense of trust between patients and the healthcare team enabling patients and relatives to make appropriate decisions and plans based on a realistic insight into their situation

What are the negative consequences of not providing patients with bad news?

Consequences of not BBN Impact on treatment and decision making Patients receiving burdensome, inappropriate and unnecessary treatment False optimism and being unable to marry what is happening with the information received Misunderstanding and confusion over the intention and aim of treatment Denying patients the opportunity to participate in decision making Unnecessary anxiety in worrying about the unknown

Impact on end of life care Depriving patients and families of essential time before the patient’s condition deteriorates Preventing the discussion of end of life preferences Denying patients the opportunity to get their affairs in order Impact if relatives informed and the patient isn’t Feeling isolated and unable to communicate with each other Unnecessary strain on family relationships Families carrying the burden of deception

Poor job and role satisfaction Impact on the healthcare team Job stress and burnout Poor job and role satisfaction Disagreement and fractured relationships if not all agree with the information provided

Word of caution Some patients prefer not to receive some or all of the facts as this is how they cope with their illness Cultural differences preferences and behaviours around information relating to particular diagnoses, such as cancer, prognosis and end of life decisions in some cultures it can be common for the family to be given the information while the patient is shielded from the full facts. Individual patient’s preferences for information should guide the content, timing and delivery of information

Does being honest destroy hope? research reveals that providing honest information does not remove hope honest information can support patients in their efforts to maintain hope reduces fear of the unknown enables patients to match their hopes with the reality of their experience Is this a contradiction?

Reframing hopes and goals (Campbell 2010) “When we worry about destroying hope we are generally referring to a very specific hope of getting better or living longer. But hope is a complex, multi-dimensional and above all flexible construct... One can shift from hoping for a cure...to hoping to go home from the hospital. Such a shift in the things one hopes for requires a reframing of goals to meet the realities at hand...(a reality) that none of us would wish for”

Reframing hopes - examples Hopes described by patients with a life-limiting illness include: living longer than expected good symptom management getting the most out of the time that is left making it to certain events or achieving certain goals mending damaged relationships spending special time with family and friends This doesn’t mean people want to be in that situation (or that they won’t be sad/angry/upset) It is a way of coping that can be used over time

Summary – what have we learnt about BBN? Bad news includes many different types of information Information is defined as “bad news” by individuals and cannot always be determined in advance BBN is a process with multiple episodes of information provision as people experience the implications of their situation and raise questions and concerns It also includes the activities before, during and after the news is given HCPs carry out a wide range of diverse roles in relation to BBN

Final notes The way that bad, sad and significant information is given is important The consequences are long-lasting How it is done can influence experiences and satisfaction with treatment relationships with the healthcare team. adherence and compliance with treatment coping with the consequences of illness Providing information in a way that helps the patient understand and cope with what they are told requires skills and knowledge Guidelines and good practice advice have been developed to support staff These will be explored in the next section of the study day