While working at Henry Ford Hospital many years ago, I completed a clinical rotation in the division of Psychiatric Consultation & Liaison. Our job at C&L was to answer the psychiatric questions and consults originating from the general medical floors of this large urban hospital. Some of these questions involved the assessment of patients in the oncology unit. It was intensively emotional to witness the struggles and existential crises that confronted these patients. Their situations often led to meaningful questions about life’s meaning, mortality, legacy, religion, and justice/fairness. Often these issues were affecting equally the patients and their close family members (parents, children, siblings, and spouses).
We didn’t have a pediatric oncology unit, but while interacting with parents attending to their adult children with cancer, I often thought about the experience of losing a child to cancer, and the additional existential issues that must accompany the sadness of losing a son or daughter to cancer so early. This area of research is very distant from my own work, so I seldom come across studies addressing these issues. But this week I read an article on the journal Archives of Pediatric and Adolescent Medicine that explored the core existential issues confronted by parents of children with cancer.
The authors were especially interested in examining the issues experienced by parents of children with cancer and in particular factors associated with “sense of meaning”. The authors studied 194 parents whose kids were receiving cancer treatment at the Dana-Farber Cancer Institute and Children’s Hospital in Boston. The parents completed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale, which addresses a number of existential issues experience by parents including sense of meaning. The authors wanted to explore what are the core issues involved in sense of meaning, and the doctor, child, and illness attributes that contribute to parents successfully dealing with these existential battles.
The kids in the study were 49% girls, diagnosed at an average age of 6.6, but ranged in age from infants to adolescents. Over 50% of the kids had a relatively good prognosis (>75% chance of surviving).
The authors identified two core existential issues confronted by the parents: Sense of Purpose and Peace of Mind. High scores in sense of purpose reflect endorsement of specific beliefs about one’s purpose in life, such as “I feel a sense of purpose in my life”, “My life has been productive”, or “I have a reason for living”. High scores in peace of mind reflect endorsement of items such as “I feel peaceful”, “I feel a sense of harmony within myself”, or “I know that whatever happens with my child’s illness, things will be okay”.
Since parents scored lower in the peace of mind domain, the authors decided to examine the factors that predicted having high rate of peace of mind.
Race, education, or gender were NOT associated with parental peace of mind.
Surprisingly, none of the disease characteristics were associated with peace of mind, including time since diagnosis and likelihood of survival.
There were three doctor factors that greatly affected peace of mind. Specifically, 1) receiving more extensive prognosis disclosures, 2) obtaining medical information that is perceived by the parent as ‘high quality’, and 3) trust between the parent and the doctor, significantly increased the odds of achieving peace of mind.
What was most surprising about these findings is how they highlight the undeniable importance of the patient-doctor relationship. Parents’ ability to reach high levels of peace of mind, which will likely greatly contribute to ‘acceptance’ during the grieving process (there is a grieving process even when the prognosis is good and the patient survives), not from characteristics of the cancer, or from other personal characteristics, but from the quality of the relationship with their health care providers. Doctors who took the time to provide extensive explanations of the prognosis and detailed medical information about the condition, and who were able to develop a relationship of trust with the parents of their patients, significantly facilitated, likely without even knowing it, the spiritual/emotional well-being of these parents.
Mack, J., Wolfe, J., Cook, E., Grier, H., Cleary, P., & Weeks, J. (2009). Peace of Mind and Sense of Purpose as Core Existential Issues Among Parents of Children With Cancer Archives of Pediatrics and Adolescent Medicine, 163 (6), 519-524 DOI: 10.1001/archpediatrics.2009.57