At the study hospital, pediatric palliative care (PPC) involvement for children with VADs has sharply increased in recent years, according to the new research by Christopher Knoll, MD, and colleagues of Lucile Packard Children's Hospital Stanford, Palo Alto, Calif. "Early PPC involvement occurred in the majority of patients and appears to lead to more frequent discussion of goals of care and advance directives," the researchers write. The paper is the final publication of a study presented at the Paediatric Cardiac Intensive Care Society meeting in London.
PPC opens discussions about 'tailoring care' for critically ill children with VADs
Ventricular assist devices are mechanical devices that can help pump blood in people with weakened hearts. In recent years, VADs have been increasingly used as a bridge to transplantation in children with various causes of advanced heart failure.
While outcomes are improving for children with VADs, the risk of serious complications and death remains high. Dr. Knoll and colleagues examined the "evolving integration" of palliative care for children with VADs at their hospital, including how PPC services inform care for these critically ill children.
From 2014 through 2017, 55 children underwent VAD placement at the authors' hospital. Median age at VAD placement was 9.5 years. Dilated cardiomyopathy (enlarged heart) was the most the most common cause of heart failure, 55 percent of children; followed by congenital heart disease, 25 percent.
The rate of PPC involvement increased steadily: from 9 percent (one patient) in 2014 to 65 percent in 2017. The trend reflected an effort to standardize referral to PPC for any patient being considered for VAD placement. Most children had their first palliative care evaluation before VAD placement. Only three families (five percent) refused PPC evaluation when offered.
Palliative care involvement led to discussion and proactive decisions about care – including steps to take if the condition deteriorated. "Patients and families receiving PPC services were significantly more likely to limit resuscitation efforts in the event of clinical decompensation and experience compassionate withdrawal of mechanical support at time of death," Dr. Knoll and coauthors write. The use of advance directives also increased, although this trend was not statistically significant.
Overall, 24 percent of the children died while hospitalized for VAD placement or after being sent home with a VAD. Those who did not receive palliative care were more likely to have invasive interventions or further life support or resuscitation efforts before death. "Patients receiving PPC services were thus more likely to die with goals of care being palliative rather than curative," the researchers write.
We sought to focus on quality of life for VAD patients, even if a life-saving outcome is no longer deemed possible. The focus is not to limit care when things aren't looking good for the patient but to tailor care to the patient's and family's wishes – pediatric palliative care services are extremely important in that aspect."
Dr. Christopher Knoll, MD, and colleagues of Lucile Packard Children's Hospital Stanford, Palo Alto, California
Previous studies have shown the benefits of palliative care in other groups of critically ill children and in adults with advanced heart failure, but the new study is the first to focus on children with VADs. "These findings underscore the benefits of early and sustained PPC involvement in pediatric VAD patients," Dr. Knoll and coauthors conclude. Noting the recognized need for a "holistic approach" to VAD implant decision-making, the researchers call for further studies of the impact of palliative care involvement in children with VADs.