In recent years, there has been a shift in clinical practice in relation to breaking bad news in favour of openness and the provision of information to patients. However, there is a small body of evidence that suggests that this shift in attitude has not impacted on people with learning disabilities, who appear still mainly protected from such knowledge
There have been some attempts to adapt guidelines on sharing information, but one major issue that often, people with learning disabilities are given bad news about their health by untrained carers rather than health professionals who are themselves struggling to cope with the bad news themselves.
The authors of this study set out to develop a model for breaking bad news around life-limiting illness and death to people with learning disabilities. The first step in this was to develop guidelines for decisions about disclosure or non-disclosure of bad news. The researchers wanted to know:
- What are stakeholders’ preferences around disclosure or non-disclosure?
- What are the reasons of family carers, professionals and medical healthcare staff for disclosure or non-disclosure of bad news?
- Are there people with learning disabilities or particular sets of circumstances where disclosure of bad news could be harmful?
What they did was work with 109 participants from stakeholder groups: 21 people with mild/moderate learning disabilities, 28 family carers, 26 specialist learning disabilities professionals and 34 general health professionals
They held focus group meetings with groups of stakeholders (e.g. with participants with learning disabilities, family carers etc.) and carried out semi-structured interviews with family carers and general health professionals.
They triangulated data between different stakeholder groups and with the literature and carried out content analysis using grounded theory, a systematic methodology which involved developing theory through the analysis of data rather than using data to test an already formulated hypothesis.
They found that people with learning disabilities, when asked about a fictional character, appeared to base their responses on their own personal preferences, but gave good reasons for these.
Family carers mainly felt that it was better to protect their son or daughter but wanted to be told themselves and to be instrumental in deciding how much was disclosed.
Learning disabilities professionals were overwhelmingly in favour of disclosing bad news couching their responses in a framework of rights, that the person had a right to know and that they had no right to withhold such information from the person.
Medical healthcare professionals felt the person with learning disabilities should be told, but only if it was right for the particular individual.
One issue that emerged from the study was the fact that the bearer of news to a person with a learning disability may be a carer, who lacks knowledge of the condition and would be unable to answer questions about prognosis.
Medical healthcare professionals were clear about needing to assess the person’s ability to understand the information as a precursor to disclosure, which was linked to an assessment of the person’s sense of time. All stakeholder groups were clear that if a person had no sense of timescales involved, it was not helpful to talk about something that may happen in weeks, months etc.
Medical and learning disabilities professionals described many occasions where there were conflicting views about disclosure, from families who did not want disclosure and professionals who did.
The main reasons for disclosures were:
- people’s right to know
- understanding events and changes can help people cope
- being involved in planning and decision-making, – how to use the time that is left and opportunities to say goodbye.
There were also situations where participants agreed that the full truth could be overwhelming and therefore potentially harmful as concepts of illness, treatments and death might be too abstract to understand.
The main reasons for non-disclosure were
- Person will get upset
- Bearer of news will get upset
- Person can’t understand
- Person has no concept of time
- Others don’t want him told
The authors conclude that the key question is not: ‘Should the truth be disclosed?’ – but– ‘What parts of the truth should the person be helped to understand and when?’ which means that those supporting the person need to:
- carry out an assessment of the person’s capacity to understand abstract concepts;
- consider their concept of time
- consider their need to understand changes in their life;
- consider their wish for involvement and planning
- work with and listen to the views and concerns of (family) carers
They set out a flow diagram to describe the process for deciding on disclosure or non disclosure. This begins with a question around mental capacity. If the person has capacity, then obviously their wishes are to be followed. If not, then there is need for a best interests decision process.
Following this, the key question to address is could the disclosure be harmful to the person, based on some of the reasons discussed above (e.g. if the person is overly anxious, unable to put the news in a timeframe). If yes, then the news is not disclosed at that point in time, but the approach needs to be regularly re-assessed.
If the disclosure is not assessed as harmful, the next key question, is does the person want to know? If not, the question ‘could non-disclosure be harmful’ needs to be addressed. If yes, then the news needs to be disclosed with care, but if not, then this again, needs to be regularly re-assessed. If the person does want to know, then the news should be disclosed with care.
The authors conclude that whilst there may be valid reasons why people with learning disabilities have been protected from the truth in bad news situations, it is important to assess whether non-disclosure is in the best interest of the person.
They suggest that non-disclosure is not a static one off decision and that there must be constant re-assessment of the person’s coping ability and their need to understand aspects of the truth over time.
Developing Guidelines for Disclosure or Non-Disclosure of Bad News Around Life-Limiting Illness and Death to People With Intellectual Disabilities, Tuffrey-Wijne, I et al., in Journal of Applied Research in Intellectual Disabilities, 26: 231–242.