What Brain Tumor Patients and Their Families Have Taught Me

Abstract

The purpose of this article is to identify the experience of the patient with a World Health Organization grade III/IV and IV/IV brain tumor, and that of their family, to best understand how to treat them. It is the cumulative input of hundreds of patients and family members seen over a 20-year career of specialization at two teaching hospitals. No patient who has been diagnosed with a brain tumor, whether low grade, high grade, or benign, escapes totally unharmed because tumor existence, surgical removal, and/or toxicity of treatment combine to cause varying degrees of brain injury. Additional considerations are the variables of tumor location within the brain, the age of the patient, their premorbid intellectual capacity, and their fear and anxiety, for full understanding of the impact and the complexity of the tumor and treatment on the individual patient. The mental health provider's mandate in caring for this population is threefold: first, provide hope in what patients feel is a hopeless situation; second, serve as witness to their experience and acknowledge and validate the changes and loses that occur; and third, create empowerment in what seems a helpless situation. For the purposes of this article, further reference to brain tumors will be World Health Organization grade III/IV and IV/IV.

Hope: A further dimension for engaging family members of people with ABI

“…Beyond the area of brain injury, hope has been recognised as fundamental to the coping and adjustment of family members during critical and acute care (Keenan & Joseph, 2010), and in cases of brain tumours (Lucas, 2013). It has been documented as an essential factor enabling people with spinal cord injury to cope (Dorsett, 2010).…”

Through the patient’s eyes: the value of a comprehensive brain tumor center

“…The need for hope is a prevalent theme in nearly all of the studies conducted on patients' experience of illness [6,7,9,11,12,20,21,26,[28][29][30]. It has been suggested that the initial and ongoing interaction between the patient and physician might provide patients with the greatest opportunity for retaining hope [10,20].…”

“…A powerful example of the needs of patients during this crucial time has been provided via patient and patientfamily interviews, which suggest patients fear an inevitable process of loss that is linked to the feeling of hope being taken away [11,13,17,26]. The most pervasive theme described by patients and family members at the time of diagnosis is the need to receive a hopeful message counterbalanced by reality, support and individualized information [7,10,[17][18][19][20][21]25].…”