Delivering bad news

Introduction

Pediatric ophthalmologists are frequently faced with the challenge of discussing varying degrees of vision loss. While sometimes decreased vision in children or diplopia in adults may be reversible, at other times it is permanent. Growing evidence indicates that quality verbal communication between physicians and patients influences patients’ future therapy and contributes significantly to achieving better health outcomes. Therefore, knowing how to deliver bad news effectively and constructively is essential, particularly given the time constraints of the modern medical encounter in an increasingly multicultural world. Medical care providers should be aware that a patient's overall perception of their care is often based on the conversation surrounding the delivery of bad news.

Historically in Western cultures, medical information deemed potentially injurious to a patient was withheld. In some cultures, news about terminal diagnoses may still be shared with family members but withheld from the patient due to traditional cultural beliefs, the role of family, and ambiguous laws or regulations. These days in North America, physicians are responsible for disclosing all information a patient wants to learn about their diagnosis and treatment. Conveying such “bad news” has been defined as delivering any information that adversely affects a person's outlook about his or her present or future. The negative impact of such news arises from the discord between a patient's expectations of the future and the actual medical situation. In the field of pediatric ophthalmology, this definition can be extended to include any information that unfavorably impacts parental expectations for their child.

Varying levels of bad news exist. Universally bad news, such as informing parents that their child is blind, can be contrasted with news of a more equivocal nature in which the information conveyed leads to undesirable consequences. For example, trabeculotomies might be recommended for a child with primary congenital glaucoma but the treatment and follow-up will require significant family resources while also necessitating a parent's absence from work. Although more diagnostic and treatment options are available than ever before, there are now different and more complex types of bad news to convey, such as positive genetic test results. Positive genetic testing for some diseases such as neuronal ceroid lipofuscinosis can, for pediatric ophthalmologists, greatly compound the difficulty of delivering bad news as the diagnosis not only leads to a poor visual outcome but also neurodegeneration and early death.

How a patient or family receives any information, however, depends upon the life context of that individual patient/family and the unique set of experiences and beliefs they bring to the discussion. The parents of a child with inherited retinal disease who is surrounded by other affected, supportive family members who are familiar with the eye clinic infrastructure and available community resources may be approached differently than an economically disadvantaged single mother whose newborn was just diagnosed with cerebral visual impairment.

Changing the phrase “breaking bad news” to “sharing life-altering information,” however, was recently proposed to address the subjective nature of how such information is received. The newer terminology reflects the idea that the patient and/or patient's family are best suited to determine the import of the news delivered in the context of their lives. For example, a pediatric ophthalmologist might consider news that a child needs eyeglasses to be trivial, while the patient’s family might take this as bad news. By the same token, a pediatric ophthalmologist might find it hard to deliver the “bad news” that a blind, painful eye must be enucleated while the patient’s family might find this to be a relief. Providers should not make assumptions about the way the information provided will be received.

Much of the literature on delivering bad news originated from oncology and palliative care settings and centered on defining bad news, emphasizing the importance of knowing how to deliver bad news, and establishing guidelines for how to break bad news. Later studies have examined barriers to delivering bad news and outcomes of different strategies for training professional caregivers to share life-altering information in a variety of settings and cultural contexts. Current evidence supports the need for physicians to move beyond simply supplying biomedical information into a more patient-centered approach, exploring and addressing the psychosocial needs of patients and their families in order to better care for the whole patient.

Importance of knowing how to deliver bad news