- Assess the person’s mental capacity. Capacity depends on understanding, taking on board and retaining relevant information for long enough to make the particular decision.
- Local/national legislation must be followed. Practitioners must understand how this applies to the person’s situation. (For example, the Mental Capacity Act in England and Wales)
- There is an assumption of capacity.
- How much someone is able to understand at a particular point influences decisions around when and how to impart what aspects of the bad news.
- People with capacity will still need to be given information in chunks, suited to their way of processing information.
It is essential to consider someone’s capacity to understand, and the way different people understand and make sense of the same information.
With each new chunk of information, you must decide whether the person will be able to understand it. Some people may not be able to understand certain aspects of the information at this specific point in time. If this is the case, it does not make sense to give it; rather, you should stick to the information he can understand. Of course, this is sometimes hard to assess – people may be able to understand more than we think.
In order to give people the best chance of understanding, we must consider what and who they need to help ensure the best possible communication, and how information can be given.
Establish the support needs, and the person(s) best placed to provide that support, of:
- The person with intellectual disabilities
- Everyone else involved, including family, friends, carers and professionals.
Many people will be affected personally by the bad news, particularly family and carers. They are needed to help someone with intellectual disabilities to understand and cope with the news, but in order to do so, they themselves may need help and support. This could be information, emotional support, social support, practical support and/or spiritual support. Very often, paid care staff and professionals also have specific support needs.
The people involved
- Establish who is involved in, or affected by, the bad news situation (‘stakeholders’). This can include family, partners, friends, paid care staff, health and social care professionals.
- Establish what each stakeholder knows about the person’s current knowledge framework.
- Establish what knowledge chunks each stakeholder holds. This may include knowledge about the illness and prognosis, or the person’s life history, understanding and communication. For example, a doctor may know how someone’s illness is likely to progress; a family carer may know how the person has coped with bad news in the past; an intellectual disability nurse may know how to break complex information down to suit an individual person’s needs.
- Establish who is best placed to impart and help the person process new chunks of knowledge.
Everyone with a significant involvement in the life of the person with intellectual disabilities should be included in the bad news situation: families, partners, friends, circles of support, paid care staff, health and social care professionals. They may all have a different but important role to play in helping someone understand and cope with the news that is going to affect and change her life.