Breaking bad or difficult news in healthcare settings is challenging. What is the best way to tell someone they have cancer? How do you find words to say their treatment hasn’t worked? When I first became interested in this topic, I found a large body of literature had explored these questions. Studies suggested that the way difficult news is delivered has a lasting impact on patients’ subsequent symptoms of depression (Mager & Andrykowski, 2002), and that these events can have a negative impact on healthcare professionals themselves, increasing their stress levels (Shaw et al., 2013).

Despite this, one thing was still unclear: can this situation be improved? Can we train healthcare professionals to be better at delivering difficult news? This question seemed so big, so obvious, that my co-author Dr Maria Panagioti and I were sure it would have been answered before. We were surprised; while several individual studies had tested an intervention to break bad news, no one had yet systematically reviewed these studies and analysed the data together using meta-analysis. Meta-analysis combines results from multiple studies, providing better evidence about whether an intervention works and how effective it is than individual studies can provide. At first I was frustrated, why had no one done this yet? My frustration was quickly replaced with a sense of anticipation: if no one else had done it, there was an opening to do this ourselves! We got to work.

The search process
We decided to focus our review on doctors. We searched databases for potentially relevant studies and identified 2,270 records altogether. We filtered these by reading their abstracts, leaving 71 studies for more careful inspection. After reading the full texts of these, we excluded a further 53, leaving 17 studies for inclusion. The studies we included were from a range of countries, including the United States, Hong Kong and Israel. They were also from a range of healthcare settings, including palliative care, obstetrics and primary care.

Does training improve doctors’ skills in breaking bad or difficult news?
Altogether, the studies provided data from 1322 participants to answer our main question. The results of the meta-analyses were clear: interventions improved doctors’ abilities in breaking bad news with a large effect size. This effect wasn’t explained by sources that can bias results (such as the included studies being low in quality). Interestingly, interventions were most effective when they used an established framework for news delivery, known as ‘SPIKES’ (Baile et al., 2000). SPIKES outlines clear steps that doctors should follow when delivering bad or difficult news, such as delivering a ‘warning shot’ before breaking the news itself.

Could training help doctors too?
We asked a second question of the data, which was whether interventions can improve doctors’ confidence in delivering difficult news. Again, the results were clear: interventions improved doctors’ confidence in news delivery with a medium effect size. This suggests that difficult news delivery training may be one way to help reduce the stress levels of healthcare professionals who are regularly involved in these events, which is important considering current high rates of burnout in the healthcare workforce (see my previous blog on healthcare staff burnout here).

What now?
It is now clear that physicians can indeed be trained to deliver difficult news, and this training both improves their skills in difficult news delivery and also their confidence. What is less clear is whether such interventions can improve the experience of patients receiving this news. We only identified one study which looked at this. This study was based in Japanese cancer services (Fujimori et al., 2014). It found that when physicians were trained in breaking bad news, their patients reported significantly lower depression and anxiety symptoms later on, although the effect size was small. Further research into patient experience is warranted.

A need for further research in obstetric settings
One area future research on news delivery should focus on is obstetrics. The challenges in this setting are particularly complicated, as expectant parents may have no reason to think there is anything out of the ordinary with their pregnancy. Furthermore, if a healthcare professional has identified that a baby has a disability, it can be hard to know the extent of this before birth or how it will affect their lives. Our own research suggests that some parents still have a terrible experience at this time, which leaves a strong emotional imprint (Johnson et al., 2018; for my blog on this see here). Future research is needed to understand how healthcare practitioners working in obstetrics can be better trained and supported to deliver difficult news.

To read the review discussed in this blog, see here.

Put yourselves for a moment in the shoes of a sonographer, conducting an ultrasound scan on a pregnant woman. Perhaps her partner is there, and they are excited, smiling, and asking you the gender of their baby. Suddenly you notice an unexpected finding on the baby’s left arm; you can’t see his hand on this side. Perhaps it’s tucked just out of sight, but you can’t be certain.  He may be missing his hand. What would you do next? What should you say?

Make no assumptions

In the past this question has been answered too quickly. It has been assumed that the answer can be drawn from either 1) the sonographer’s personal experiences at work or 2) from research into how to ‘break bad news’ in other areas of healthcare, like cancer services. Both these assumptions are seriously flawed.

Parents’ reactions may be misleading

The first assumption is flawed because parents do not initially react based on how well the sonographer communicates this information. Instead, after hearing this news parents go into shock (Mckechnie et al., 2016). This means that the healthcare professional may do a great job of communicating the news and find the parents are extremely upset. On the other hand, they may do a terrible job and find the parents seem quiet and calm. The bottom line is that parents’ reactions at the time of the event are not a good indicator of a healthcare professional’s communication skills.

This experience is unique

The second assumption is flawed because delivering this news is different to delivering news in any other area of healthcare. In other areas of healthcare, the focus has been on ‘bad news’ (Baile et al., 2000), and this is not bad news, it is simply unexpected news. It also comes without warning; the parents are watching the sonographer’s face as they do the scan, and know as soon as something is out of the ordinary. Guidelines for delivering news in other areas of healthcare are not appropriate to apply in this situation.

Our research

It won’t come as a surprise then that in a survey we conducted in 2014, parents reported very low satisfaction with their experience of being told their baby had a limb difference (Johnson et al., 2016). To explore this area some more, we recently interviewed 20 parents (nine fathers, 11 mothers) who had had a baby with a limb difference in the UK in the last five years (for the full paper see HERE). Eight of these parents were told the news at an ultrasound scan, but 12 didn’t know about their baby’s limb difference until they were born. We asked these parents about their experiences of being told the news of their baby’s limb difference and how they thought this could have been improved.

What we found

Parents were keen to take part in the study. They had a range of experiences and while some wanted to participate because they felt things needed to improve, others were grateful for the excellent healthcare they had received at this time. However, all parents felt this was a defining moment in their lives: whether things had been done well or not well mattered. Receiving this news was the start of a journey into the unknown, and good experiences at the start had a lasting influence on how this unfolded.

Shock

In line with previous studies, all parents were shocked to learn their baby had a limb difference, but parents were less shocked when the limb difference was found on an ultrasound scan and they had time to process this news before their baby was born. They were also less shocked and less anxious when they had a friend or family member with a disability.

What parents want

Information about support organisations: Organisations such as Reach helped parents to find the right information and provided a support network. However, most parents only discovered these organisations through extensive online research and would have preferred to be told about these right away by the healthcare professional who told them the news.

Information about limb differences: While most parents wanted as much information as soon as possible about the limb difference, some said they felt overwhelmed and preferred to process the news at a slower pace. All of these parents said that being given written information would have been helpful.

Good communication skills: Parents wanted clear but sensitive communication from their care providers. In contrast to research in other healthcare settings, parents preferred it when healthcare professionals described the limb difference in a no-frills way, for example, “I cannot see your baby’s arm below their elbow on the left side”. Parents didn’t like it when healthcare professionals led into this with a warning sentence, like “I have found something wrong” or “there is a problem”. When this was said, it needlessly increased parents’ anxiety.

A care plan: Most parents felt frustrated about delays in their child’s health care; they described accessing appropriate care as a ‘battle’ and said they would have liked to know what their plan of care was going to be immediately. Only a few parents felt the plan of care they received had been good enough.

Some final pointers for healthcare professionals

If you are a healthcare professional, some final recommendations came out of our research:

Parents don’t like strangers appearing in the scan room: Some parents described being asked to go for a walk and returning to find a second sonographer in the scan room. For one parent, this was enough to trigger floods of tears, as she knew it meant something was wrong. Parents preferred it when they were warned in advance that a second sonographer was going to be invited in, and were given an honest rationale for this (e.g., “I cannot see your baby’s arm, so I need to find someone who is more experienced”).

Show that you care: Several parents said that they know delivering difficult news is hard for healthcare professionals and it is challenging to get this ‘right’. However, if they thought the healthcare professional cared, they tended to view them positively and be forgiving in any missteps in wording or communication.

Don’t panic: Parents appreciated it when healthcare professionals were confident and professional; when instead healthcare professionals communicated their personal shock at the dysmelia diagnosis (e.g., “this has never happened before”), parents felt more anxious and alone in their situation.

Insensitive questions are as bad as insensitive statements: When parents discovered the limb difference at birth, some reported being quickly asked insensitive questions. For example, one parent was being stitched up from her caesarean section when her doctor asked her what drugs/medication she had taken during pregnancy. The implication of questions such as these is that the parent has caused the limb difference by something they have done. Parents who received these types of questions too quickly found they had a strong and lasting negative impact on them.

 

References

Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A. P. (2000). SPIKES—A six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist, 5, 302-311. doi:10.1634/theoncologist.5-4-302

Johnson, J., Adams-Spink, G., Arndt, T., Wijeratne, D., Heyhoe, J., Taylor, P. J. (2016). Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identifiedWomen and Birth29, e99-e104.

McKechnie, A. C., Pridham, K., & Tluczek, A. (2016). Walking the “emotional tightrope” from pregnancy to parenthood: Understanding parental motivation to manage health care and distress after a fetal diagnosis of complex congenital heart disease. Journal of Family Nursing, 22, 74-107. doi:10.1177/1074840715616603

 

The reference for the paper described in this blog is: Johnson J., Johnson, O., Heyhoe, J., Fielder, C., & Dunning, A. (2018). Parent experiences and preferences when dysemlia is identified during the prenatal and perinatal periods: A qualitative study into family nursing care for rare diseases. Journal of Family Nursing. In press. It can be viewed on the journal website HERE.

What is dysmelia?

Dysmelia is a group of rare diseases involving  limb differences. Rare diseases are those which affect less than 1 in 2000 people, but around 8000 rare diseases exist altogether and over 50 million people in the USA and Europe are affected.

Several rare diseases including dysmelia are diagnosed during pregnancy or shortly after birth. If  diagnosed during pregnancy, parents may need to make important decisions around whether to undergo invasive testing or to receive a termination. In dysmelia, termination rates vary between 20% and 50%. If identified after birth, parents will need rapid access to information and support, to help them care for a baby with a disability. However, little is known about the experiences of parents and how they could be better supported at this time.

Our research

We undertook research into the experiences of parents when their baby was diagnosed with dysmelia (for the full paper, see here). We distributed two surveys online, which were responded to by parents from across the globe. The first survey was completed by 417 parents, and the second survey was completed by 130 parents.

What we found

Results from the surveys indicated that a third of parents received a diagnosis of dysmelia before birth, and two thirds received the diagnosis after their baby was born. On average, parents were less than satisfied with the care that they received (average score of 2.6 on a scale from 1 to 5, where 1 was ‘very dissatisfied’ and 5 was ‘very satisfied’; see Figure 1).

Figure 1

Figure 1. How satisfied parents were with the care they received when their baby was diagnosed with a limb difference.

Only a quarter of parents were given information about organisations they could contact for support (Figure 2), and parents based in Europe were twice as likely to be given this information as parents living elsewhere. This was particularly striking when compared to our finding that over 90% of parents said they would have wanted this information.

Figure-21.jpg

Figure 2. The percentage of parents who received information about organisations they could contact for information and support regarding limb differences.

What parents want

When asked about the information and support they would have liked to receive, 46% of parents said they would have liked information about raising a child with a limb difference and 51% would have liked information about specialist treatment. In terms of support from professionals, 41% would have liked to be referred to a psychologist, and 39% would have liked to speak to a hand/foot surgeon.

One simple improvement healthcare professionals can make

These findings suggest there is a strong need to improve the healthcare provided to parents when their baby is diagnosed with a limb difference. One clear and simple improvement could be to provide information about organisations that parents can contact for support. These findings may also be relevant for other rare diseases which are often identified during pregnancy or shortly after birth.