• To recognise the challenges in breaking bad news to people with learning disabilities
• To consider various tools that you could use in your practice to break bad news
• To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers)
• To contribute towards your professional development and local registration renewal requirements (non-UK readers)
Breaking bad news is a challenging aspect of healthcare professionals’ roles in any setting. In learning disability settings, specific challenges compound the difficulty of this task. For example, a person who has cognitive difficulties may not understand an abstract concept such as death; the person’s family may be concerned that hearing bad news will be too distressing for them; or the healthcare professional may be reluctant to talk about death because of their own beliefs and values.
This article discusses the barriers related to breaking bad news to people with learning disabilities. It also describes several tools – generic and specific to the learning disability field – which healthcare professionals can use to inform and improve their practice in this area.
Learning Disability Practice. doi: 10.7748/ldp.2023.e2208
Peer reviewThis article has been subject to external double-blind peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Green J, Wilcox J (2023) Breaking bad news to people with learning disabilities: barriers and tools. Learning Disability Practice. doi: 10.7748/ldp.2023.e2208
AcknowledgementThe authors would like to thank Fiona Fisher Bullivant, learning disability nurse and lecturer in learning disability nursing, University of Central Lancashire, for her support with developing the initial ideas for this article
Published online: 27 February 2023
The aim of this article is to support healthcare professionals to develop their knowledge, confidence and skills in breaking bad news to people with learning disabilities. The article is targeted at nurses, nursing associates, healthcare assistants and support workers – referred to throughout as ‘practitioners’ – who care for people with learning disabilities. After reading this article and completing the time out activities you should be able to:
• Identify the main challenges for practitioners when breaking bad news to a person with a learning disability.
• Discuss why different people have different perceptions of what ‘bad news’ is.
• Describe various tools designed to support healthcare professionals to talk to people about death and dying.
• Explain the importance of working collaboratively with families and carers when breaking bad news to people with learning disabilities.
What do you think the expression ‘breaking bad news’ means? What do you consider to be ‘bad news’? In your practice, have you come across people whose perception of bad news was different from yours?
• Breaking bad news in the healthcare context may involve explaining to someone that they have a life-limiting condition or informing them of another person’s illness or death, for example
• In learning disability settings, breaking bad news is often complicated by legal and ethical issues about mental capacity and by a desire to protect the person from distress
• Potential barriers with breaking bad news to people with learning disabilities include: cognitive and communication issues; attitudes of practitioners, families and carers; and environmental factors
• Tuffrey-Wijne’s (2012, 2013) model for breaking bad news to people with learning disabilities has four main elements: building a foundation of knowledge; considering understanding and mental capacity; considering the people involved; and identifying the support people need
Bad news has been defined as ‘any information which adversely and seriously affects an individual’s view of his or her future’ (Buckman 1992). This article focuses on breaking bad news in the healthcare context – for example, communicating to someone that they have a life-limiting condition or informing them of another person’s illness or death. Breaking bad news is challenging for healthcare professionals in any setting (Bousquet et al 2015) and they cannot always predict the effect the news will have on the recipient, since this will partly depend on the person’s understanding and expectations (Baile et al 2000). However, despite these challenges, breaking bad news is a professional duty of nurses. The Nursing and Midwifery Council (2018) makes it clear that being able to have difficult conversations, which includes breaking bad news, is a required proficiency of nurses.
In learning disability settings, practitioners who break bad news to people may have known the person for many years and developed a strong bond with them (Tuffrey-Wijne and Rose 2017). It is important to bear in mind that people with learning disabilities may perceive bad news differently from others. For example, hearing that their day centre is closing may be more difficult for a person with a learning disability than hearing that they have a serious condition, since it may have a more immediate and concrete effect on their life. Each person will have their own perception of what bad news is for them.
Breaking bad news to a person with a learning disability is often complicated by legal and ethical issues with mental capacity and by a desire to protect the individual from distress (Tuffrey-Wijne et al 2013). However, not being given information may be equally distressing for the person. Salander (2002) found that some patients newly diagnosed with cancer experienced anxiety due to a lack of straightforward information and preferred to know the facts. Similarly, Tuffrey-Wijne et al (2010) found that people with learning disabilities were often upset when they were not given any information at all when receiving a cancer diagnosis.
In end of life and palliative care, phrases such as ‘having difficult conversations’ or ‘having challenging conversations’ are often used (Costelloe et al 2018, Johnston and Beckman 2019, Macmillan Cancer Support 2022). However, these phrases are ambiguous and people with learning disabilities may not understand them, so the authors of this article recommend using an unambiguous phrase such as ‘breaking bad news’.
McEvoy et al (2012) found that, among 34 adults with learning disabilities, most of them only had a partial understanding of the concept of death. In their systematic review, Lord et al (2017) found that the subjects of death, dying and bereavement are often surrounded by a culture of silence in learning disability settings. People with learning disabilities who are diagnosed with a life-limiting condition may not be aware that they are going to die; they will probably be told that they are ill, but they might not be given comprehensive information about their condition and prognosis (Tuffrey-Wijne et al 2020). Furthermore, people with learning disabilities are not always given the opportunity to make choices about important decisions regarding their health and care (Tuffrey-Wijne et al 2018, Noorlandt et al 2020) and are less likely to be asked about their preferences for end of life care compared with the general population (Hunt et al 2020).
As with the general population, people with learning disabilities are more likely to be told that they may die if they have cancer than if they have another life-limiting condition (Tuffrey-Wijne et al 2020). Some people may find the practical consequences of a life-limiting diagnosis, such as frequent hospital visits or being too ill to enjoy their usual activities, more challenging rather than the diagnosis itself (Tuffrey-Wijne and Watchman 2015). Unexpected death is more common among people with learning disabilities than in the general population (Hunt et al 2020, Todd et al 2020), so there is often less time for the person and their family, friends and carers to plan for the end of life and it is less likely that the person will be able to die in their place of residence – whether that is in the family home or in a residential care setting (Todd et al 2020).
Brownrigg (2018) noted a tendency not to disclose bad news to people with learning disabilities in relation to their own health and prognosis and those of people important to them. Furthermore, people with learning disabilities are less likely to be informed of the death of a family member or friend (Tuffrey-Wijne et al 2020), or to be involved in funerals or other rituals with death and dying (McRitchie et al 2014).
The challenges in breaking bad news to people with learning disabilities can be compounded by cognitive and communication issues, notably if the person has a severe learning disability. The National Institute for Health and Care Excellence (2021) recommends that everyone should be involved in decisions about their care, but the extent to which people with learning disabilities are included in the decision-making process at the end of life depends on their ability (capacity) to make an informed choice (Noorlandt et al 2020).
Prognostic uncertainty often makes conversations about death and dying challenging (Anderson et al 2020) and this difficulty is compounded if the person with a learning disability struggles to understand the difference between past, present and future. Tuffrey-Wijne and Watchman (2015) suggested that, if the person does not understand the concepts of past and future, it may be best to focus on providing information about the present.
Some people with learning disabilities will have issues processing and retaining information, including about their health (Oosterveld-Vlug et al 2021). It is important to understand the person’s existing knowledge base, since they may have limited life experience and knowledge gaps. Breaking bad news can be particularly challenging if the person also has dementia, since their knowledge base will decline over time as a result of the cognitive effects of their condition (Tuffrey-Wijne and Watchman 2015).
There are often several people involved in the care of a person with a learning disability and these people may have differing views about breaking bad news, potentially leading to disagreements. Families may be concerned that the person will find the bad news too distressing, be unable to cope or lack resilience. They may want to hear the news first to decide what to tell the person. Conversely, practitioners are more likely to want the person to be informed as part of routine practice (Tuffrey-Wijne et al 2013). Not giving the person comprehensive information about their health could affect their treatment decisions, with potentially serious consequences (Tuffrey-Wijne et al 2010, 2020). For example, the person may decide not to proceed with life-saving or life-prolonging treatment because they have not understood the severity of their condition.
Practitioners, families and carers who decide not to disclose potentially distressing information to a person with a learning disability may think they are making that decision on compassionate grounds, or use this argument to justify their decision (Tuffrey-Wijne et al 2013). However, people’s willingness to talk about death and dying is potentially affected by their attitudes, experiences, culture, beliefs and values (Tuffrey-Wijne and Rose 2017). Families and carers may be reluctant to break bad news to a person with a learning disability because it is emotionally challenging for them and/or because they lack medical knowledge (Tuffrey-Wijne et al 2013), while practitioners may lack knowledge about how to communicate with people with learning disabilities. This lack of knowledge may partly explain why, in contrast with the general population, people with learning disabilities tend to hear bad news from their family or carers, rather than from healthcare professionals (McEnhill 2008).
If the person with a learning disability struggles to understand what death means, practitioners, families and carers may feel less confident in talking to them about it (Gallagher et al 2018). If they are unsure how to best communicate with the person and/or how to manage consent and mental capacity issues, they might avoid the topic altogether (Kirkendall et al 2017).
The use of medical terms or complicated language is another barrier to people with learning disabilities understanding the information they are given, so practitioners need to use plain, simple language. Furthermore, it is important that practitioners ensure they make decisions based on what the person wants – as far as this can be determined – rather than what they think is right for the person (Gallagher et al 2018).
Barriers to breaking bad news to people with learning disabilities include environmental factors that compound the person’s difficulties in processing information, such as unfamiliarity with the surroundings, issues with the physical environment (for example suboptimal lighting, noise or a lack of privacy) and a lack of reasonable adjustments (Northway and Hopes 2022). Breaking bad news over the phone has increasingly occurred due to the coronavirus disease 2019 (COVID-19) pandemic (Collini et al 2021), but that mode of delivery may hinder the person’s ability to process the news and increase their feelings of helplessness (Krieger et al 2022). It may also be inaccessible for people who rely on visual, technology-assisted or augmentative communication methods.
Read about the SPIKES and BREAKS protocols at: www.osmosis.org/blog/2021/03/15/breaking-bad-news-using-the-spikes-protocol-vs-the-breaks-protocol What aspects of these tools would be useful in your practice?
A growing number of tools, protocols and models are available that practitioners can draw on to break bad news to people, some of which are specific to the learning disability field. Generic tools can provide a useful general knowledge base but will often need to be supplemented with a specific tool.
Table 1 provides an overview of three generic tools for breaking bad news: the REDMAP framework (Boyd 2020), the SPIKES protocol (Baile et al 2000) and the BREAKS protocol (Narayanan et al 2010).
| REDMAP framework (Boyd 2020) | SPIKES protocol (Baile et al 2000) | BREAKS protocol (Narayanan et al 2010) | |
|---|---|---|---|
| Description | A six-step guide to conversations on future care planning with people whose health is deteriorating and their families | Six-step mnemonics for conducting conversations about death and dying, originally developed for people diagnosed with cancer and now used more widely | |
| Steps |
|
| |
The ADVANCE toolkit (Gallagher et al 2018) has been specifically designed to support young people with learning disabilities and their families to plan end of life care. It is a values-based toolkit covering the following areas:
• Assumptions – avoiding making assumptions about the wishes of individuals and their families.
• Dignity – respecting diversity and maintaining dignity.
• Vulnerability – being sensitive to the person’s vulnerability towards the end of life.
• Autonomy – maximising autonomy in decision-making and advocating on behalf of the person where needed.
• Non-discriminatory practice – respecting the person’s rights and being open to different perspectives.
• Commitment – committing to provide ongoing, high-quality care and support.
• Environment of care – providing a safe, peaceful and private environment, as well as adequate time.
Irene Tuffrey-Wijne, a prominent researcher and advocate in the learning disability field, proposed an evidence-based model for breaking bad news designed specifically for people with learning disabilities (Tuffrey-Wijne 2012, 2013). Practitioners can adapt this model to different situations and break bad news in a way that is systematic and tailored to the individual. Tuffrey-Wijne’s (2012, 2013) model involves four main elements:
• Building a foundation of knowledge.
• Considering understanding and mental capacity.
• Considering the people involved.
• Identifying the support people need.
When working with a person with a learning disability, practitioners need to use every opportunity to develop their knowledge of that person and support them to develop their own knowledge about their health. This involves identifying how the person communicates, giving them opportunities to make choices and ensuring they have a range of experiences – for example arranging a visit to the hospital ward before an admission (Tuffrey-Wijne 2012, 2013).
Developing a therapeutic relationship with the person and their family is fundamental, since it gives people the language and opportunity to have an ongoing conversation with practitioners about what is important to them. Building a foundation of knowledge can be a slow process, so bad news cannot always be shared in a single conversation and breaking bad news should be seen as a process, rather than a single event. The therapeutic relationship is sustained by making time for people, being approachable, being reliable and giving consistent information (Wright 2021).
It is important to use concrete language and avoid the use of medical terms or euphemisms. Practitioners also need to be mindful of their tone of voice (Barber 2016, Ali 2017) and demonstrate sensitivity and compassion. Repeating information, breaking it down and relating it to the person’s experience can support them to develop knowledge and understanding over time. Tuffrey Wijne (2012, 2013) described the process of identifying ‘chunks’ of knowledge that the person needs and delivering them over time and in a planned way, so that the person’s knowledge base can be developed gradually. Chunks of information on ‘what is happening right now’ may be the easiest to understand at first and can later be complemented with chunks of information about ‘what will happen in the future’, if the person wants to know and is able to understand this (Tuffrey-Wijne 2012, 2013, Tuffrey-Wijne and Watchman 2015). Explaining to the person what is likely to remain the same between ‘right now’ and ‘the future’ can reassure them.
People with learning disabilities may find it easier to communicate through means other than verbally and it may be necessary to use images, photos, objects or places of reference of which the person has concrete experience and that mean something to them. Information can also be conveyed using a visual tool such as Talking Mats (Cameron and Matthews 2017). In some cases, practitioners may need to recognise that the person will not gain a full understanding of what the bad news may mean for them, but that should not stop them from broaching the subject with the person as best they can (McEnhill 2008).
Each person will have their own preferences about how and to what extent they want to receive bad news (Tuffrey-Wijne et al 2013) and these preferences may change, so they need to be determined at every encounter. When given bad news, people with learning disabilities need to receive concrete and unambiguous information that is easy to understand (Tuffrey-Wijne et al 2013). The person’s understanding of the information given to them will be crucial for how they cope and how they can be supported to plan for their future care, if they choose to do so.
Not disclosing bad news may be appropriate at one point in time, but this needs to be reassessed regularly and the person needs to be supported to express their preferences whenever their circumstances change (Tuffrey-Wijne et al 2013). Practitioners must follow the principles of the Mental Capacity Act 2005, including evaluating the person’s mental capacity to make decisions about their care at every encounter.
It is often families, carers or residential care staff who break bad news to people with learning disabilities. However, these groups are often inadequately prepared for this task and insufficient consideration is given to how the bad news may affect them and what support needs they might have (McEnhill 2008, Tuffrey-Wijne et al 2013).
Death and dying are relatively uncommon in learning disability settings, so staff may lack experience of such situations, possibly leading to more complex bereavement for them (Todd et al 2020). Tuffrey-Wijne and Rose (2017) highlighted challenges for staff who have known a person for many years when that person dies. It is important that practitioners who do not regularly work with a person with a learning disability enlist the assistance of people who know the person well (Lewis et al 2017, Gallagher et al 2018). Family carers often know the person best and are likely to be able to assist by sharing information about how the person communicates and how to communicate with the person (Gallagher et al 2018).
Tuffrey-Wijne (2012, 2013) explained the importance of considering who should break bad news to a person with a learning disability. If it is a medical matter, a nurse or doctor may be optimally placed to do so, with assistance from a family member or carer to ensure the news is shared in a person-centred way. However, even if it is a nurse or doctor who breaks the bad news, families and carers will support the person to understand and cope with it, so may need support with this and their own feelings about the situation (Tuffrey-Wijne et al 2013). Rauf and Bashir (2021) emphasised the importance of involving palliative care specialists and other members of the multidisciplinary team as well as families and carers when providing palliative care to a person with a learning disability.
Irish Hospice Foundation – Toolkit for compassionate end-of-life care
hospicefoundation.ie/wp-content/uploads/2021/01/IHF-Toolkit-for-compassionate-end-of-life-care.pdf
Macmillan Cancer Care – Courageous conversations
www.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/2187-10061
The Gold Standards Framework – Advance care planning
Whatever the extent to which a person with a learning disability understands what is happening to them, they will need support to cope with their changing circumstances. Finding out how the person has coped with challenges in the past is important. People with learning disabilities may use a range of coping strategies when experiencing stress (Burns and Lampraki 2016). Active coping – which involves problem-solving, finding information and seeking support – can reduce their psychological distress (Hartley and MacLean 2005, Goswami and Mohapatra 2016), while some people may be able to access treatments such as cognitive behavioural therapy (Giannaki and Hewitt 2021). Emotional support will be important and the person’s spiritual needs may also need to be considered (Tuffrey-Wijne 2012).
Family and carers will also need support. Perera and Standen (2014) found that the coping strategies of families and carers looking after people with learning disabilities and dementia included solution-focused strategies, practical resources and obtaining support from others. Getting respite – ranging from a five-minute break to a weekend away – and creating a positive narrative about the person and their life also appear to be valuable strategies (Perera and Standen 2014). Practitioners can assist with developing a life story or photo album about the person and can encourage the family to take regular breaks and seek respite care.
The multidisciplinary team, family, carers and residential care staff need to work collaboratively to identify what each person’s role will be. If a family member is the person who is going to break the bad news, healthcare professionals will need to support them in doing so. A named contact person responsible for communication between the family and services will be essential (Michael 2008, Bishop et al 2015, Gallagher et al 2018).
Practitioners themselves will also have support needs. Continuous reflection on practice will increase their self-awareness, knowledge and insights (Anderson 2019). Clinical supervision and support from colleagues and managers are crucial in encouraging practitioners to undertake self-care and be self-compassionate (Andrews et al 2020).
Breaking bad news is an important but challenging aspect of care provision. In learning disability settings, the task of breaking bad news can be compounded by several barriers. Various tools, protocols and models are available that can support practitioners to enhance their skills and confidence in breaking bad news. Each person is unique, so flexibility is required when applying any model in practice to ensure care is person-centred. It is also important that practitioners reflect on their practice and take time for self-care.
Identify how breaking bad news to people with learning disabilities applies to your practice and the requirements of your regulatory body
Now that you have completed the article, reflect on your practice in this area and consider writing a reflective account: rcni.com/reflective-account
06 April 2023 / Vol 26 issue 2
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