Patients with terminal cancer experience considerable emotional distress at the end of their lives. When these patients are parents with young children at home, the anguish can feel unbearable. Worries about the impact that their death will have on their children, spouses and other family members can be profound and shape decision-making about how aggressively to pursue treatment options. Despite these important considerations, health care providers do not routinely discuss these concerns with parents who have cancer.
Depending on an individual’s prognosis and course of treatments, people with terminal cancer are often treated for months or years. For patients still raising children at home, this time frame offers an opportunity to discuss parenting-related concerns with their oncology providers. Ideally, these discussions would inform treatment decisions and prompt parents to take steps to prepare themselves and their families for their deaths. We suspect, however, that this rarely takes place.
There are multiple obstacles to open communication about preparing for death. For providers, it can be difficult to initiate conversations about the future when it does not include the words “cure”, “remission”, or “no evidence of disease.” There has been a wealth of research examining the tension between acknowledging prognostic reality and fear of extinguishing hope. The truth is, achieving that balance is difficult. It is the kind of conversation that is easy to put off until “later.” Yet, the risks of avoiding it hold unique consequences for parents: a mother never says goodbye to her children; a father misses the opportunity to write letters to his children; spouses fail to craft a shared message about the impending death; the surviving spouse feels unmoored in the sole parental role because parenting conversations never took place. The heartbreak of losing a parent or spouse at an early age can be assuaged by honest dialogue. Often, this only takes place when health care providers initiate difficult conversations about prognosis.
Our research with families affected by parental cancer is informed by our roles as mental health clinicians in the University of North Carolina Comprehensive Cancer Support Program. After the death of several young mothers due to cancer, my colleagues, Drs. Donald Rosenstein and Justin Yopp, created a program tailored for widowed parents. The Single Fathers Due to Cancer support program includes clinical, research, and educational efforts including a support group for the fathers. Subsequently, we developed a research agenda to learn more about the pressing issues facing widowed parents both prior to – and following – the deaths of their spouses.
One aspect of our study was to ask widowed fathers about the end-of-life experiences of their wives. The fathers reported several important concerns: that dying mothers were very distressed about their families at the end of life; the fathers themselves experienced very high levels of depression and grief symptoms; and that greater worries in the dying mother was related to more depression and grief symptoms in the bereaved father. Since the data obtained in this survey was cross-sectional, we cannot assume causation from association. Whether measures to address the concerns of these mothers before their death would lead to less pain in their surviving loved ones remains to be seen. However, we are hopeful that despite the tragedy of early parental loss, more can be done for these families.
Our goal is to improve the care of parents with advanced cancer and their families– both during the period of illness and after. To learn more about our group: www.singlefathersduetocancer.org.
Dr. Eliza “Leeza” Park is an Assistant Professor of Psychiatry at the University of North Carolina at Chapel Hill. Her clinical care and research focuses on the intersection of psychiatry, palliative medicine and oncology and specifically, how advanced cancer in patients with dependent children influences parental outcomes and bereavement in their families. She has conducted research examining psychological distress in parents with advanced cancer, depression in bereaved caregivers, and pharmacologic treatment of depression in patients with cancer. She is currently supported by a career development award to study the treatment decision-making and psychological distress of parents with advanced cancer.