Study conducted at Segal Cancer Centre reveals greater stress for caregiver, potential dangers for patients
Denial is a common coping strategy for patients with advanced cancer, who are unable to come terms with their progressive decline. In a unique study published in Palliative and Supportive Care, Naomi Kogan, an oncology social worker at the Segal Cancer Centre at the Jewish General Hospital, and colleagues examined how denial increases the burden on the family caregivers of those patients.
Her findings reveal that denial creates a communication barrier, preventing patient and caregiver from discussing issues relating to the illness, blocking the latter from providing adequate care. For example, caregivers reported difficulties broaching medical issues with patients, including changes in symptoms and pain management. The denial made it more difficult for the caregivers to ensure that the patients took their medications. In some cases they were helpless to do anything even when the patient’s refusal to follow treatments placed them in life-threatening situations.
“On the one hand, the caregivers felt obliged to support the denial because it can help patients deal with an intolerable situation that they can’t change and to preserve a sense of normalcy,” Kogan said. “However, it excluded family members from any dialogue about the nature of the patient’s condition leaving them feeling very isolated and powerless.”
As a result, the caregivers experienced high levels of anger, frustration, or anxiety. Unable to even acknowledge their own needs, many caregivers also felt guilt, believing they failed to provide adequate support, and this places them at higher risk for physical and emotional problems later on.
“Caregiving is a difficult job, for which the caregiver has received no training or preparation,” said Kogan. “Patients are living longer with cancer and spending less time in a hospital setting, meaning that family members are playing a bigger role in caring for loved ones. As a result, they require support from health care professionals, both in dealing with the patient and with their own needs.”
It is for professionals to navigate a narrow course between supporting the patient while letting the caregivers know that the problems they are dealing with are common, and helping them to understand that there are often very real limitations to the help they can provide for their patients.
“In my role, I want to maintain a neutral, supportive relationship so that the patient feels comfortable turning to me at any time”, Kogan explains. “For the caregiver, I validate their experience and, where possible, I raise their concerns with medical staff when issues of compliance arise.”
Kogan co-authored the study, titled “The extra burdens patients in denial impose on their family caregivers,” with Dr. Robin S. Cohen of the Lady Davis Institute at the Jewish General Hospital and Michelle Dumas of the Ottawa General Hospital.
For further information, and to arrange interviews, contact:
Research Communications Officer
Lady Davis Institute
Tel.: 514-340-8222 x 8661