How to share information with patients

Author: Pippa Simpson

While studying Music Production at Leeds Conservatoire, I was diagnosed with a rare Anaplastic Pleomorphic Xanthoastrocytoma (APXA) brain tumour. After two craniotomies, radiotherapy, and targeted chemotherapy, I reached remission in 2019. I am now an NCRI Consumer Forum Member for the Health Services Research subgroup of the Teenage and Young Adult and Germ Cell Tumour group and a core member of ‘Stars’, a flagship Youth Advisory Group advising researchers on the effects cancer has on a young person's education, employment, social life, and wellbeing.

There is no doubt that healthcare professionals are experts within their professional fields. The best healthcare professionals demonstrate knowledge, compassion, empathy, and an understanding of how best to communicate with patients. However, there is a divide between some clinicians and their patients. This is often caused by the terminology that healthcare professionals use.

Healthcare professionals will use medical knowledge resources to ensure that they make decisions based on the best available evidence. However all decisions should be shared with patients and patients can only take part in shared decision making when they are fully informed about the options that are open to them. This short blog outlines useful tips for healthcare professionals so that they can better share information with patients. It is based on the experiences of patients that I have been in contact with.

The understanding of medical language varies greatly across patients. But for most patients, simplifying the terminology and inviting questions helps them absorb the information, and feel fully informed and in control.

Many patients appreciate healthcare professionals who are self-aware when communicating with patients and who adapt their communication styles to suit each individual. Patients appreciate having time and space to process information regarding their diagnosis and treatment plan. Many also highly rate the balancing of factual information with positivity and optimism. They find that this demonstrates warmth and understanding during consultations which are often distressing.

Patients also need assurance that they’re able to voice any concerns or preferences that they have. This may relate to clinical treatments – but also to how clinical care is delivered. For example, some patients may feel that they would prefer a different support network to the one that has been made available to them. Patients need to know they might have a choice in this regard.

The core aim of healthcare services is to deliver high quality care and also a good patient experience. Yet patients are sometimes left feeling silenced and disconcerted following discussions regarding their diagnosis or treatment plans. Patients need to know that they can ask questions and also need to feel positive and hopeful to some degree when they leave a consultation.
“It really makes a difference to have someone positive even if the news is bad”. Patient with cancer

Healthcare professionals can sometimes unknowingly create an overwhelming environment for patients. This can be related to having too many clinicians in the room - causing a sense of fear and worry. This can be prevented by ensuring all patients are asked what they are or are not comfortable with prior to consultations. Then adjustments must be made to suit the patient’s needs. In this way preventable distress can be avoided.

Communication skills are all important when caring for patients. Patients can report receiving insensitive comments from medical staff such as “You’re too young to have cancer” - leaving them feeling silenced, irritated, and isolated. Understanding the sensitivity of a subject is vitally important. It is also important to be continuously mindful of the language being used. Just one example of this is referring to a patient by their name and not their diagnosis. Referring to people by their diagnosis is simply dehumanising.

Lastly patients should be part of all conversations that relate to their care. Healthcare professionals should not have conversations at the bedside about their care without actively involving them in these conversations.

Competing interests