End-of-life care for parents of young children may need to include additional support services that help the entire family cope with terminal illness, a recent study suggests.
While all families may struggle when a loved one is dying, parenting duties can create an added layer of emotional stress and complicate efforts to comfort patients at the end of life, researchers note in the journal BMJ Supportive and Palliative Care.
"What is unique about patients with young children is the extraordinary psychological suffering related to parenting," said lead study author Dr. Eliza Park, a psychiatry researcher at the University of North Carolina at Chapel Hill.
These parents may worry about how their illness negatively impacts their children's lives, how their death will impact their kids, and how to explain their prognosis to their children in an age-appropriate way. They may also experience anticipatory grief about their inability to raise their children into adulthood, Park added by email.
"The patient in these situations truly is the entire family unit," Park said.
To understand the unique issues faced by terminally ill parents, Park and colleagues surveyed 344 widowed fathers who had lost a spouse to cancer and were raising young children.
Their late wives had been about 44 years old on average. The families typically had two kids under 18 years old, with the youngest child around 8 years old.
About 43 percent of the women had cancer that had spread to other parts of the body at the time tumors were diagnosed.
Roughly two thirds of the women received hospice services, and 41 percent of them died at home. Almost half of them died at the location of their choice.
According to the fathers, 38 percent of mothers had not said goodbye to their children before death, and 26 percent were not at peace with the prospect of dying.
Nine in 10 widowed fathers reported that their spouse was worried about the strain on their children at the end of life, the survey found.
Fathers who reported clearer communication between doctors and their spouse about the prognosis also reported fewer indications of depression or grief in their survey responses.
One shortcoming of the study, the authors note, is that it was done online and men were recruited through an open-access educational website, so researchers couldn't verify that the men were indeed widowed fathers who lost spouses to cancer. The participants also tended to be white and married, with more income and education than a typical widow might have, which could limit how much the results apply to a broader population of parents and families.
Still, the findings suggest a need to better understand how parenting influences choices in treatment at the end of life, and what support families and children may need to cope with terminal illness, the authors conclude.
This may be particularly true for mothers who haven't experienced the death of a loved one before, said Denice Sheehan, a researcher at Kent State University College of Nursing and director of clinical research at Hospice of the Western Reserve in Cleveland, Ohio.
These women may be uncertain about what to do for themselves, their children and their spouse, Sheehan, who wasn't involved in the study, said by email.
"Having more time with their children without being a burden to their family is often their primary goal," Sheehan added. "Mothers tend to worry about how their children will live without them, who will take care of them and nurture them throughout their lives."