Research by Sexton (2013), in plain language
What’s this study about?
This study looks at how occupational therapists have bad news conversations with patients affected by brain conditions.
Why did they do this study?
Having bad news conversations with patients is one of the hardest things clinicians need to do. Most attention on this task is in settings like cancer, where bad news is about something life-threatening. But, in settings that deal with brain conditions (neurology), bad news tends to be about something life-changing, like having to live with a long-term disability. Occupational therapists work in these settings. They often get asked by patients what their disability will be like in the long-term. These questions are hard to answer and need to be answered carefully, because bad news delivered badly can hurt the relationship with the patient. On the other hand, when it’s delivered well it can help patients accept and adjust to having a disability.
Research has found that clinicians have different ways of having bad news conversations. Sometimes they stall, other times they are very blunt with patients. They might also gently clue them in, so that patients gradually come to their own realisation about what their disability will be like in the long-term. Studies show that patients with cancer are generally quite happy with how bad news is delivered to them, but we don’t know how patients with brain conditions feel. It’s especially tricky to answer patients’ questions when there’s uncertainty about how their disability will be like in the long-term. Being optimistic at the same time as telling the truth is another difficult part of having bad news conversations. You need to give hope, but you can’t give false hope because it sets up unrealistic expectations.
Even though government and professional bodies say that clinicians need to be careful in having bad news conversations with patients, clinicians don’t actually get much training in this area. Many clinicians, from occupational therapists to doctors, feel quite troubled by this task. There’s hardly any research looking at bad news conversations in settings that deal with disability related to brain conditions. This study looked at occupational therapists’ experiences of having bad news conversations about long-term disability with patients affected by brain conditions.
How did they do this study?
The researcher interviewed 10 occupational therapists, one male and nine females, in the British Association of Occupational Therapists Neurological Specialist Section. They all worked in a hospital or a rehab clinic with people with disabilities after a brain condition. The researcher herself was an occupational therapist, but she didn’t know any of the clinicians she interviewed. The interviews were done in person, except one which was done over the phone. The researcher followed the same list of planned topics for all the interviews. The researcher analysed what the occupational therapists said in their interviews by drawing mind maps and looking for patterns of meaning in their responses. This was checked by an occupational therapist colleague to make sure they agreed on the patterns.
What did they find in this study?
The researcher found four main patterns in what the occupational therapists said in their interviews.
First, the occupational therapists said that bad news conversations were just a part of their job. They said that patients often ask about their disability on a technical, medical level (impairment), but an occupational therapist’s job is instead to look at disability in terms of what people have trouble with in their everyday life (function). So that’s how they try to frame the conversations. They said that the biggest reason for having bad news conversations was to make plans for when patients leave hospital or finish their rehab treatment. They said these conversations can be especially hard for patients who think they can stay in rehab until they’re back to normal. It’s also a hard conversation when the patient hasn’t gotten much better with treatment and they have to talk about going to a nursing home instead of going home. They said another reason for having bad news conversations is to help patients make realistic plans.
Second, the occupational therapists seem to have bad news conversations the ‘collaborative’ way. This means there’s a back-and-forth with the patient and it’s not just a one-sided thing. But, they said that sometimes it needs to be more direct, usually in cases where they’re worried about whether the patient will be safe going home. They also might stall or avoid bad news conversations. They said they might stall if they don’t have the time or space to have a proper private conversation with the patient. Or, they might avoid the conversation if they think the patient isn’t ready to talk about it, or that the bad news will affect their motivation in rehab. They said that they have bad news conversations in a way that’s personally suited to each patient. It’s based on what each patient needs, rather than a specific set of steps on how to have a bad news conversation.
Third, the occupational therapists had five main strategies for having bad news conversations with patients. One strategy was to have the patient ‘find out for themselves’. Usually before patients leave hospital, occupational therapists do home visits to see how well patients can manage in their own home. They said it’s more eye-opening for patients to see whether or not they can manage in their own home, instead of just doing practice activities in hospital. Another strategy was to set goals for rehab. Even if the patient’s goal is unrealistic, they can still work towards it and have a conversation halfway through based on how well they’re tracking. Another strategy was to use others. Using other doctors and different clinicians on their team, to get their opinion and figure out what the patient’s disability will be like in the long-term. Also, using family members, to repeat information to the patient and to have them see the patient doing rehab activities. Another strategy was to maintain hope. They mostly agreed that having a positive outlook is important, while being careful not to give false hope. But, they also felt that hope makes patients more engaged and motivated in rehab. The last strategy was to use the right style of communication. This means showing active listening, acknowledging the patient’s emotions, and having the right body language.
Fourth, the occupational therapists all agreed that bad news conversations weigh them down emotionally. They said it’s because as a clinician you get close with patients and feel like you’ve failed them by not being able to make them better. They said they hardly get any training on having bad news conversations and that confidence comes through experience. Some of their ideas for getting training were to do role play, get support from supervisors, think back on their own practice, and be in a staff support group.
What do these findings mean?
This was the first study to specifically look at occupational therapists’ experiences of having bad news conversations with patients affected by brain conditions. The findings show that bad news conversations are an important part of an occupational therapist’s job. Occupational therapists tend to make these conversations about disability in terms of what people have trouble with in their everyday life, as opposed to on a technical, medical level. The researcher felt that this showed that occupational therapists have a confident understanding of the unique type of healthcare that they give – helping people manage in their day-to-day life – and that they keep to this in different parts of their job. The researcher also felt that the phrase ‘bad news conversation’ has a negative tone and might not be the best fit to describe the task of having these types of conversations with patients. The researcher felt that a different phrase could be used, one that captures the difficulty and uncertainty of these conversations but doesn’t necessarily make them out as negative, even if they’re life-changing.
The findings show that experienced occupational therapists probably have different ways of having bad news conversations, some of which have been shown in other research on this topic. These include being collaborative, being avoidant, and being direct. They also make conversations personally suited to each patient, which follows one of the guiding principles of how occupational therapists give healthcare. The findings also give us an idea about the strategies occupational therapists use for having bad news conversations, the main one being doing home visits so that patients can find out for themselves. The researcher felt that knowing the strategies that experienced occupational therapists use can widen the options for inexperienced occupational therapists and those who have trouble with the task. The findings also show that bad news conversations are emotionally taxing on clinicians, as we know from previous research. Another thing is that even though occupational therapists try to give hope without giving false hope, it’s hard to know how patients feel without asking their point of view. This could be a topic for future studies.
The researcher acknowledged that this was not a very scientific study and the findings might not be true. She admitted she had very little experience doing research and made some mistakes during this study. This included being leading in the interviews, and not being in-depth with the questioning. She was motivated to do this study because of her own experience as an occupational therapist of having bad news conversations with patients. Also, her colleague who checked the findings didn’t have a good understanding of the research topic and background. Because of these problems, these findings need to be taken with a grain of salt.
Where can I learn more?
This blog post is based on the following study:
Sexton, D. (2013). ‘As Good as it's Going to Get’. Bad News Conversations in Neurology: Challenges for Occupational Therapists. The British Journal of Occupational Therapy, 76(6), 270-279. doi:10.4276/030802213X13706169932860
You can read the original research paper here:
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