One of the most widely known authors of breaking-bad-news-guidelines is Buckman, who described his model in his seminal book ‘How to break bad news: a guide for health care professionals’ (1992).

There have been numerous other guidelines, but they mostly follow the same linear, step-by-step approach:

 

  • Get the right setting, involve/invite significant others, sit down, look calm and attentive, convey that you are listening, switch off the phone
  • Find out how much the patient knows
  • Find out how much the patient wants to know
  • Give the patient a ‘warning shot’ by letting them know that bad news is coming
  • Clarify understanding
  • Give information step-by-step, in small chunks
  • Respond to emotions
  • Answer questions
  • Make a plan for follow-up meetings and support

Why don’t the existing guidelines work for people with intellectual disabilities?

These guidelines for breaking bad news were mostly developed for medical staff, particularly doctors, to be used in a clinical setting such as a doctor’s office or hospital ward. People with intellectual disabilities often rely on others (such as their families) to help them understand changes in their circumstances, including changes in their health. The right time for people with intellectual disabilities to learn about bad news may not be in the office of a highly trained doctor, but at home with their family or with unqualified care staff.

Assumption 1:

The news is bad

    • Bad news is anything that makes your future look less bright than you thought. If someone doesn’t understand the news, it will probably not be experienced as ‘bad’.
    • If someone has a poor concept of time, ‘bad news’ about the future (such as ‘mum is going into hospital next week’) may either not be seen as bad news (because it doesn’t relate to the here and now), or it may be seen as imminent bad news for the entire week (because the person doesn’t grasp that there is a time gap between now and next week). Some people have great difficulty in understanding abstract concepts and experience life mostly through what can be seen, heard and felt. They are less likely to experience the news that ‘your friend has dementia and will gradually lose her skills’ as bad news.
    • The opposite is also true. Information that you think is quite innocent or insignificant may be experienced as very bad news indeed.

Assumption 2:

Breaking bad news involves one bearer and one recipient of bad news (usually a doctor and a patient)

In reality, there are many people involved in bad news situations. A clinical setting, such as the doctor’s office, may be where a patient first hears about the bad news, but it is not necessarily where he begins to understand it.

Assumption 3:

Breaking bad news is focused on one central piece of information

Often, the information is complex and involves a lot of different chunks of information. For example, the information ‘You have end-stage kidney failure’ includes not only information about a complex diagnosis, but also information about increasing tiredness, breathlessness, pain, not being able to go to work anymore, needing to move your bed downstairs, the concept of not getting better and, eventually, of dying – and much more.

Assumption 4:

Breaking bad news is a one-off event

In reality, ‘breaking bad news’ can be a misnomer. Bad news does not get ‘broken’ from one moment to the next. Telling someone that he has end-stage kidney failure is one small event in a whole series of events aimed at helping him to understand. Breaking bad news is best seen as a process, not an event. It involves repetition and gradual building of understanding.

Assumption 5:

Breaking bad news can be planned

In fact, any new bit of information or any change, at any time, can be experienced as bad news by someone with intellectual disabilities. All those around the person need to be constantly aware of this, always giving new information with the knowledge that it may become a ‘bad news’ situation.

In summary, the problems with the existing guidelines are:

  • They make assumptions about what constitutes bad news
  • They do not accommodate the many people involved in explaining bad news to someone with intellectual disabilities
  • They do not give sufficient direction around the complexities of bad news situations, including ways in which complex information can be broken down and explained
  • They do not recognise sufficiently the gradual and unpredictable process of making sense of bad news

These problems might also be true for the general population, but they become especially obvious when someone has intellectual disabilities.

A team approach is clearly needed, with the team including family, paid care staff and clinicians. This team needs to share information well, understand that the person is facing a major change in his life, and try to understand how this person can make sense of such change.