Research by Wu et al. (2020), in plain language
What’s this study about?
This study looks at how patients should be told about having cancer.
Why did they do this study?
Many people will have cancer at some point. Even though treatments are getting better, cancer is still life-threatening. Telling patients they have cancer (i.e. giving a diagnosis) and telling patients how it’ll progress (i.e. giving a prognosis) is a hard thing for medical staff to do. The truth might be crushing for patients, but they also have a right to know. There are some guidelines on how to deliver bad news to patients, but there are still questions about exactly how much patients should be told, and whether telling too much might do more harm than good.
In developed countries, patients tend to be quite involved in their own healthcare and are usually told their diagnosis and prognosis frankly. But, in other parts of the world, like the Middle East, Eastern Europe, and Asia, patients often aren’t told the truth. In these cultures, family members usually have the say in what patients are told. Some patients want to know but aren’t told, which goes against their rights. Other patients don’t want to know the truth, which needs to be respected too.
The researchers wanted to know, firstly, whether patients know their diagnosis and prognosis, secondly, what family members think about telling patients the truth, and thirdly, how medical staff go about telling patients the truth.
How did they do this study?
The researchers conducted a survey with patients, family members, and medical staff from two hospitals in Shanghai and Hainan in China. Patients had to be over the age of 18, have cancer, and mentally well to take part in the study. Family members could be parents, partners, children, siblings, or other members of the patient’s family who were most involved in taking care of the patient. Medical staff had to be involved in the care of cancer patients. The survey was conducted between May and July 2019. 137 patients (70 male, 67 female), 134 family members (63 male, 71 female), and 54 medical staff (20 doctors, 34 nurses) took part in the study. On average, the patients were 52 years old, family members were 47 years old, and medical staff were 27 years old.
The survey questions differed slightly for the patients, family members, and medical staff but covered the same topics. For example, some questions asked how much patients should be told, other questions asked whether patients should be told right from when they’re first diagnosed.
What did they find in this study?
Based on the patients’ responses, 81% knew they had cancer and 23% knew how serious it was. About 50% were told by their doctors and about 40% were told at the time when they first got diagnosed. 77% wanted to know the whole truth right from when they were first diagnosed.
Based on the medical staff’s responses, 89% felt it was better to tell patients their diagnosis right when they’re first diagnosed. 65% didn’t agree with family members’ requests to not tell patients the truth.
Based on the family members’ responses, 35% didn’t want patients to know their diagnosis. 63% said it was because it would make the patient worry and lose hope, 17% said it was because it would make the patient not do what the doctor says, and 20% had a range of other reasons. If it was terminal cancer, 29% said they would tell the patient.
The percentage of patients who knew they had cancer was a lot higher than what family members thought. The percentage of patients who wanted to know the truth was a lot higher than what medical staff thought.
What do the findings mean?
Patients, family members, and medical staff have different views on how patients should be told about having cancer. Patients want to know the truth a lot more than what their family members and medical staff think. This shows that medical staff should give information based on what each individual patient wants to know.
It’s not uncommon for patients to not be told they have cancer. Studies show that patients sometimes guess their diagnosis based on their symptoms and what they read on the internet. When they’re trying to figure out their diagnosis, patients can go through a hard time as well as lose trust in their family and medical staff. So, patients who want to know the truth should be told the truth.
Medical staff tend to think it’s more important to tell family members the truth rather than patients. And, family members tend to want to be the ones to tell the patient. This might be because of Confucianism philosophies, where decisions are made as a family not on your own. In China, telling the truth to family members is legal. Patients normally choose a family member to deal with the doctor on their behalf and they’ll all sign a document saying they’re aware of their rights and duties. Doctors and families don’t want to tell patients the truth because they’re worried about the patient losing hope and not do what the doctor says. Also, telling the family first gives them time to process it, mentally prepare the patient, and emotionally support the patient when telling them the truth.
Most patients want to know their diagnosis and prognosis directly from their doctor, who they view as the only reliable source of information. It might be a good idea for medical staff to work together as a team to tell patients their diagnosis and prognosis. For example, nurses can first figure out whether a patient wants to know and how much they want to know, then tell the doctor so that the doctor can adjust what and how they tell the patient.
The big difference between what patients want to know and what medical staff tell shows that there needs to be a better understanding of patients’ needs and wishes. There can be more research on exactly how much and when to tell patients their diagnosis and prognosis, and strategies for telling patients in a way that respects their rights without causing harm.
The researchers point out that their findings are only based on a relatively small survey conducted in two hospitals. So, there might be different opinions from other patients, families, and medical staff that aren’t shown in the findings. Also, patients who don’t want to know about having cancer might not have volunteered to take part in this study, so the findings might be biased. Finally, the survey questions and findings didn’t have enough detail to show the potential factors influencing the different opinions about telling the truth about having cancer.
Where can I learn more?
This blog post is based on the following paper:
Wu, J., Wang, Y., Jiao, X., Wang, J., Ye, X., & Wang, B. (2020). Differences in practice and preferences associated with truth-telling to cancer patients. Nursing Ethics, 0(0), 0969733020945754. doi:10.1177/0969733020945754
You can read the original paper here:
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