Blog: Receiving bad or difficult news – patients and their support networks

At some point in time, we have all had to receive difficult news in one life domain or another.  Depending on personal psychological and physical composition, the experience may hit us first physically, with a sensation such as a sinking of the stomach, a hit in the face, or a clouding or ringing in the ears. This may be followed perhaps by a flood of emotions in various constellations – anger, fear, sadness, anxiety, panic…, and various thoughts – what will happen now? What to do next?

In the health field, giving and receiving bad or difficult news is a particularly poignant topic. Illness, – chronic, terminal, debilitating, life altering – is a life occurrence that rocks peoples’ respective worlds. Particularly when working with older patients with low health literacy, various factors may put them at a disadvantage for coping with such information. It is therefore essential to deliver bad news empathetically, in clear, understandable language, in order to ensure the burden of being overwhelmed with complicated information is not added an already difficult situation.

Researchers are therefore interested in how such news can be delivered in the best possible way to older patients with low health literacy, from the point of view of both givers and receivers.

When considering the best way to deliver bad news in health care, many of the main needs expressed by patients are straightforward and achievable – private and comfortable space, clear explanations, help with making treatment decisions.  Based on information extracted from one-to-one interviews, questionnaires, and literature reviews, the voiced opinions of relevant individuals (doctors and nurses, and patients and their support networks) on this topic can been seen in the first table below.

Interestingly, the viewpoints of all people involved seem to have a large degree of overlap.

So why is the topic still so hard?

One of the main essential findings was touched upon by a patient during an interview, in response to being asked about the role of the doctor in delivering bad news:

“Doctors must assess the patient’s condition and then give them the news. The doctor should check if the patient can tolerate the news because people are different: everybody is not the same.” (Abazari et al., 2016).

This requirement, this skill, is not something that can be trained in the traditional sense of the word. It requires awareness, empathy, and a holistic, sensitive perception of the patient. In addition, it is needed alongside health professionals’ many other duties to work with complex information, treatments, decisions, and deliver this information to patients in an understandable way.

 What is needed to deliver difficult news in health care in the best possible way?
– Opinions of the people involved

Doctors/Nurses

Essential aspects to include in the interaction:
– Address emotions
– Address external factors that influence the effect of the news beyond the patient-professional relationship: family, systemic and institutional factors, cultural factors
– Health professionals thus must consider their individual relationships with the patient, and the patient’s family, the institutional and systemic environment, and any relevant cultural aspects

Patients/Support Networks

What patients want from health professionals:
– Clear explanation, including status of illness, symptoms, and what to expect in the future
– Empathetic way of delivering the message
– Emotional support during the interaction
– Understanding what is important to the individual patient
– Having their concerns listened to
– Assurance that pain can be controlled

Patient and family experiences:
– Patients are more satisfied when health professionals spend time delivering bad news
– Families of critically ill patients seek information and want to be clearly informed
– Patients and families have experienced both supportive and unsupportive interactions, depending on health professional communication skills
– Clear communication and information from health professionals can help reduce stress and anxiety

But how then can this be improved?

There are many suggestions from individuals involved in this process, but perhaps a key message for health professionals is to be acutely aware of the need to take time, listen, and be empathetic.  One nurse, during an interview summed it up from her own experience:

‘ … if you do listen, you do try to understand, then very often you can work as a partnership and that’s when best care takes place, because you can, you can work at their pace. You can make plans for how they would like things to be and that empowers them, you know, rather than taking the power away and telling them what’s going to happen.’ (Mishelmovich et al., 2016).

Taking more general tips, while being sensitive to individual differences, may be the most flexible and useful guide. Below are some further examples of such tips from both health professionals and patients.

Doctors/Nurses

Suggestions for what is necessary:
– Effective communication with patients and their families
– Prepare and set the stage for delivering bad news
– Minimize as much negativity associated with the illness as possible
– Help patients and families make appropriate treatment decisions

Patients/Support Networks

Some acts that can help fulfill patient desires:
– Tell patients to prepare mentally
– Tell patients of their expected life expectancy (if applicable)
– Help patients sustain hope
– Respond empathically to patients’/families’ feelings
– Inform clearly and suggest realistic goals
– Listen to what patients and families expect/want/hope
– Help make and  carry out a plan

Giving and receiving bad news will always be a difficult topic, particularly when working with older patients with low health literacy, but when health professionals listen to what patients and their families need and want, and are as sensitive and empathetic as possible, they can at least better assist patients to effectively traverse this challenging path.

References

Abazari, P., Taleghani, F., Hematti, S., & Ehsani, M. (2016). Exploring perceptions and preferences of patients, families, physicians, and nurses regarding cancer disclosure: a descriptive qualitative study. Supportive Care in Cancer, 24(11), 4651-4659.

Abbaszadeh, A., & Ehsani, S. R. (2014). Nurses’ perspectives on breaking bad news to patients and their families: a qualitative content analysis. Journal of medical ethics and history of medicine, 7.

Aoun, S. M., Breen, L. J., Howting, D., Edis, R., Oliver, D., Henderson, R., O’Conner, M., Harris, R., & Birks, C. (2016). Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(3-4), 168-178.

Bousquet, G., Orri, M., Winterman, S., Brugière, C., Verneuil, L., &Revah-Levy, A. (2015). Breaking bad news in oncology: a metasynthesis. Journal of Clinical Oncology, 33(22), 2437-2443.

Mishelmovich, N., Arber, A., & Odelius, A. (2016). Breaking significant news: The experience of clinical nurse specialists in cancer and palliative care. European Journal of Oncology Nursing, 21, 153-159.

Parker, P. A., Baile, W. F., de Moor, C., Lenzi, R., Kudelka, A. P., & Cohen, L. (2001). Breaking bad news about cancer: patients’ preferences for communication. Journal of clinical oncology, 19(7), 2049-2056.

Sparks, L., & Nussbaum, J. F. (2008). Health literacy and cancer communication with older adults. Patient education and counseling, 71(3), 345-350.

Umezawa, S., Fujimori, M., Matsushima, E., Kinoshita, H., & Uchitomi, Y. (2015). Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care. Cancer, 121(23), 4240-4249.

Wong, P., Liamputtong, P., Koch, S., & Rawson, H. (2015). Families’ experiences of their and Critical Care Nursing, 31(1), 51-63.