Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today

To profile the national prevalence of more medically complex children with special health care needs (CSHCN) and the diversity of caregiver challenges that their families confront.

Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful. Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005). Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.

Concerns about the harms of prognostic information, including distress and loss of hope, cause some physicians to avoid frank disclosure. We aimed to determine parent preferences for prognostic information about their children with cancer and the results of receiving such information. We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. Our main outcome measure was parent rating of prognostic information as extremely or very upsetting. The majority of parents desired as much information about prognosis as possible (87%) and wanted it expressed numerically (85%). Although 36% of parents found information about prognosis to be extremely or very upsetting, those parents were more likely to want additional information about prognosis than those who were less upset (P = .01). Parents who found information upsetting were no less likely to say that knowing prognosis was important (P = .39), that knowing prognosis helped in decision making (P = .40), or that hope for a cure kept them going (P = .72). Although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents' desire for such information, its importance to decision making, or parents' sense of hope.