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Pediatric palliative care: A year in review for oncologists
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At the American Academy of Pediatrics National Conference and Exhibition in October, researchers presented preliminary results showing that patients and their parents are open to discussions about palliative care at the time of cancer diagnosis.
Investigators surveyed patients (age range, 10 to 17 years) and their parents 1 month to 1 year after a cancer diagnosis. Topics included treatment priorities, expectations for a cure and willingness to incorporate palliative care consultations at various times.
Participant knowledge about palliative care was very poor before the study, but after education, more than half reported they would be receptive to integrating palliative care at diagnosis. To date, 84 patient–parent pairs have participated, with a goal enrollment of 100.
Christine A. Zawistowski
With every passing year, the volume of literature related to pediatric palliative care continues to grow. This past year, several studies were especially pertinent for pediatric oncology patients.
The articles listed below demonstrate the current state of knowledge in the field. They can be used to aid pediatric oncologists’ incorporation of palliative care into routine cancer care.
General review
This is an excellent review of palliative care for pediatric oncologists, written in part by a pediatric oncologist and palliative care physician.
The data are specific to pediatric oncology and the reference section cites much of the important literature in this patient population. The researchers emphasize that “the uncertainty about prognosis inherent in each and every diagnosis of cancer” should be the “trigger” for introduction of palliative care into the care of children with cancer.
Availability of care
This study, conducted in Germany, compared two cohorts of bereaved parents who had lost a child due to cancer 5 years prior. One group consisted of parents whose child died in 2000. The second group consisted of parents whose child died in 2005.
The interview tool used was the Survey About Caring for Children with Cancer. Both study groups had similar disease characteristics and sociodemographic variables. Both cohorts reported similar core symptoms and suffering. Significant findings included an increase in symptom treatment, more patients receiving palliative home care and fewer children dying in the ICU.
Between the two study periods, there were some significant changes in health care in Germany, whereby palliative care resources were increased. Although there are always limitations for studies such as this due to the small sample size, retrospective nature and limitation of generalization, this study demonstrated increased use of palliative care services for children with cancer when availability was increased.
Provider perceptions
This study reports the findings of four focus groups with pediatric oncology providers at a single academic children’s hospital. The participants were divided into three groups: physicians and fellows, nurse practitioners and social workers, and inpatient and outpatient nurses.
A 10-minute presentation given at the beginning of each focus group outlined a proposed model for early integration of palliative care, including indications for a referral.
The groups identified several barriers to early integration of palliative care. Concern was voiced regarding the provider role, that being the overlap in the roles between the primary oncology team and palliative care team.
Most physicians viewed discussions of diagnosis, prognosis and treatment options — as well as treatment-related symptom management — to be the sole responsibility of treating physicians. The participating physicians made a distinction between treatment-related symptoms and disease-related symptoms. They felt the former were best treated by the oncology team, whereas the latter may or may not be best managed by the palliative care team.
Social workers, nurses and nurse practitioners felt patients’ needs were not adequately met when palliative care is offered only when cure is no longer the goal, and that there was a lack of attention to symptoms.
A second barrier identified by physicians was the belief that the purpose of palliative care is inconsistent with cure and only appropriate when cure is no longer the goal. The nonphysician groups did not share this belief.
A third barrier was patient readiness. Half of the physicians felt palliative care is not consistent with curative intent, and patients and families may not be ready for integration during the diagnostic period. Nonphysicians felt the anxiety caused by early integration would be less than that experienced during disease progression or relapse.
The final barrier was the concern that the primary oncologists’ emotions influenced patient care.
The focus groups also produced major facilitator themes to early integration of palliative care. Physicians felt that patients with OS of less than 40% to 50% would likely benefit from early integration. The initial consultation would be to educate families, then further consultation would occur at transition points in care. Consultation was thought to be more appropriate on an as-needed basis as determined by the primary oncologist. Nonphysician participants believed early integration would lead to improved patient care, as it would address quality of life during the entire course of the illness.
All groups agreed patients and families do not know what palliative care is and must be educated about this service. Early integration would provide that education. The lack of evidence-based literature regarding early intervention of palliative care was looked upon as an opportunity to conduct a pilot of this care model.
This study demonstrates the widely divergent views among different types of health care providers on the same team and suggests that team functioning could be improved.
Gaps in care
The National Consensus Project published standards for quality palliative care that covered eight domains. The study researchers sought to evaluate the value of these standards according to families and providers, as well as their accessibility. The instrument used was derived from the Survey About Caring for Children with Cancer (70%) and a literature review (30%).
The survey was administered to bereaved parents whose child died of cancer between 2005 and 2011, as well as all pediatric oncology clinicians who practiced at The Hospital for Sick Children in Toronto.
The parent response rate was 48% and the clinician response rate was 91%. Both clinicians and parents identified 15 of 20 core elements as highly valued (defined as >60% of both groups reporting the item as important). Parents rated receipt of cancer-directed therapy during the last month of life and involvement of a spiritual mentor more highly than clinicians rated them.
Of the valued elements, only three were accessible a majority of the time. Valued elements that were least likely to be accessible included a direct admission policy to the hospital, sibling support and parent preparation for the medical aspects surrounding death.
Limitations of this study include the retrospective nature and response bias.
The results showed that this group of parents and clinicians valued a majority of elements in the National Consensus Project framework, yet very few of the valued elements were routinely received. More work needs to be done to examine the nature of these deficits to determine solutions to better align access to these valued services.
The National Consensus Project first published the guidelines in 2004, with revisions in 2009 and 2013. The most recent version is available at www.nationalconsensusproject.org/Guidelines_Download2.aspx.
Symptom management
Researchers conducted a retrospective chart review of children who had died of cancer. The review occurred within 4 weeks of death.
The study group consisted of children whose parents had previously participated in a study in which preferences for aggressive chemotherapy vs. supportive care alone were elicited for children with a poor prognosis.
Severe pain and severe dyspnea 4 weeks before death, as well as location of death, served as the primary outcomes.
Findings showed aggressive chemotherapy predicted significantly more severe pain. IV chemotherapy 4 weeks before death predicted severe dyspnea and death outside of the home.
Limitations of the study include possible lack of generalization, the retrospective nature and reliance on medical records.
These findings may have implications for parents and health care providers who make decisions for children. The findings also suggest that more attention to symptom management near the time of death is needed.
Conclusion
These five articles represent just a few of the studies from the past year that added new information about palliative care for pediatric patients.
I selected them because they are specific for pediatric oncology patients and offer new insights into that population.
Also of note, the American Academy of Pediatrics reaffirmed and updated the 2000 guidelines on pediatric palliative and hospice care, and they are worth a look.
References:
Levine D. Abstract #13. Presented at: American Academy of Pediatrics National Conference and Exhibition; Oct. 25-28, 2013; Orlando, Fla.
Section on hospice and palliative medicine and committee on hospital care. Pediatrics. 2013;132:966-972.
For more information:
Christine A. Zawistowski, MD, is a pediatric palliative care and intensive care doctor at NYU Langone Medical Center in New York. She can be reached at NYU Langone Medical Center, Department of Pediatrics, 462 First Ave., New York, NY 10016.
Disclosure: Zawistowski reports no relevant financial disclosures.