What are the implications of a patient in denial about their terminal illness diagnosis?

From the Guidelines

Denial is a common psychological response to a terminal illness diagnosis, and healthcare providers should approach the situation with compassion, providing clear but gentle information, and offering psychological support through counseling or support groups. A person in denial may refuse to acknowledge their condition, dismiss medical advice, or maintain unrealistic expectations about recovery despite evidence to the contrary 1. This coping mechanism serves as a temporary emotional buffer, protecting them from overwhelming feelings of fear, grief, and loss. Family members might notice the person avoiding discussions about their illness, continuing to make long-term plans without consideration of their prognosis, or seeking multiple medical opinions hoping for a different diagnosis.

While denial can initially provide emotional protection, prolonged denial may prevent necessary end-of-life planning, limit quality time with loved ones, and delay important medical decisions. It is essential to introduce palliative care in a way that avoids implying it is only for patients who are dying, as this can lead to patients declining consultation or services 1. Instead, healthcare providers should focus on the benefits of palliative care in improving quality of life, managing symptoms, and supporting patients and their families throughout the illness trajectory.

Some key points to consider when dealing with someone in denial about a terminal illness include:

• Maintaining open communication and respecting the person's emotional journey
• Encouraging professional support through counseling or support groups
• Providing clear and gentle information about the illness and prognosis
• Avoiding language that implies palliative care is only for patients who are dying
• Focusing on the benefits of palliative care in improving quality of life and supporting patients and their families. As noted in a study published in the Journal Chest, palliative care can contribute to improved mood and quality of life, and even lead to a longer median survival 1. Therefore, healthcare providers should prioritize early involvement of palliative care in the treatment plan, and communicate effectively with patients and their families to address their physical, emotional, and social needs.

From the Research

Understanding Denial in Terminal Illness

• Denial is a common coping strategy used by patients with terminal illnesses, as they try to find ways to cope with their prognosis 2.
• It is often seen as a problem that healthcare professionals need to fix, but rather than seeing denial as a part of acceptance, it is seen as a way to establish control in an uncontrollable situation 3.

The Role of Denial in Coping with Terminal Illness

• Denial surfaces to establish control in an uncontrollable situation such as terminal illness, and as the patient and family regain some control over their lives, denial is often replaced with other, more functional coping mechanisms 3.
• The five stages of grief, including denial, anger, bargaining, depression, and acceptance, are a normal reaction to a terminal illness, and primary care physicians can help patients and their families by talking with them about these stages and providing grief counseling and appropriate pharmacotherapy 4.

Supporting Patients in Denial

• Healthcare professionals, particularly social workers, need to help the patient and family see their own strengths and make their own decisions, rather than trying to fix the denial 3.
• Case managers play an instrumental role in supporting the desires and preferences of terminally ill patients, and should be involved in all patient-centered decision making, following the ethical principles of autonomy, beneficence, nonmaleficence, justice, and fidelity 5.

Managing Terminal Illness

• Adequate pain management is crucial in maintaining the best possible quality of life for terminally ill patients, and accurate pain evaluation, preferably by the patient, is essential for guiding treatment decisions 6.
• The World Health Organization's "three-step analgesic ladder" provides a framework for managing pain in terminally ill patients, and healthcare professionals should prioritize quality of life when making treatment decisions 6.