Pediatric Palliative Care: Considerations for Pediatric Nurses

Culturally, it is widely believed that children should not die. Yet each year in the United States of America, 55,000 children under the age of twenty die, many experiencing long-term illnesses. Previous research has highlighted the myriad of concerns pediatric nurses face in palliative care. Pediatric nurses are confronted with complex issues involving physical, psychological, legal, ethical, social and spiritual dilemmas (Malloy, Ferrell, Virani, Wilson & Uman, 2006). While great strides have been made recently by the End-of-Life Nursing Education Consortium of Pediatric Palliative Care (ELNEC-PPC) in training, research indicates nurses are not fully equipped to deal with many of these difficult issues. Given the connection between training and quality of care in nursing more emphasis should be placed on ethics, communication, documentation, and continuity of care of the palliative pediatric patient.
Palliative care in pediatric patients is not solely focused on dying but also on helping children and family live to their fullest while facing complex medical conditions (Himmelstein, 2006). Unfortunately, the philosophy of palliative care is often in direct conflict with physicians, parents, and families who extend the child’s life at any cost. Identifying patients for palliative care often goes overlooked. On any given day, 15,000 infants, children, adolescents and young adults do not receive supportive care services while they die from conditions (Himmelstein, 2006). Even after identification of patients for palliative care supportive services such as pastoral care, social work, behavioral health or child life services were used in a minimal number of cases in a study of the circumstances surrounding the death of children (Carter, Howenstein, Gilmer, Throop, France & Whitlock, 2004). The Medicare Hospice Benefit was created by Congress in 1982 to meet the needs of patients nearing end of life. Children under 17 years of age make up only 0.4% of all hospice admissions and many hospices are ill equipped to meet their needs (Himmelstein, 2006).
While accessing palliative care is difficult, there are also ethical concerns facing providers and nurses. A recent study of 456 nurses and 781 physicians, from all parts of the United States, measured concerns of conscience, knowledge and beliefs, awareness of published palliative care guidelines and agreement or disagreement with those guidelines. Fifty-four percent of nurses and physicians reported, “At times, I have acted against my conscience in providing treatment to children in my care.” In order to alter the culture of pediatric palliative care, attention to the beliefs and values of pediatric health care professionals, who care for children with end of life issues, is the first step in creating meaningful change (Rushton & Catlin, 2002).
Beyond the culture of palliative care, the quality of care provided is often inconsistent. Carter et al. assessed the treatment of symptoms during end-of-life care (EOL). Results indicated inconsistencies in the quality and application of care. Although 90% of the patients studied received pain medication in the last 72 hours of life, only 34% of the medical staff, including nurses, documented the pain assessment and management.
Treatment for symptoms has been inconsistently documented for the pediatric population. Specific symptoms such as fatigue, shortness of breath, dyspnea and prolonged crying often went completely undocumented. Prolonged crying occurred at a rate of 10% in pediatric patients (Carter et al., 2004). Documentation of specific interventions focused on the child’s spiritual and emotional needs was uncommon. Whether the distinction for improvement lies in documentation or actual care, necessary revisions and improvement of standards is needed.
In order to respond to the child’s emotional needs, proper communication with the child receiving palliative care and the family unit must also be addressed. Children communicate in verbal and non-verbal ways. To attend to communication child life specialists, psychologists and art therapist may be required (Himmelstein, 2006).Wolfe et al. performed a study surveying parents whose child died of cancer. The goal of the study was to identify the timing for parental understanding that the child had no for cure compared to the timing of the physicians understanding of no cure as represented in documentation. The results showed that the physician recognized no cure 100 days earlier than the parents (106 versus 206 days). The inability to communicate with children and the family can drastically impair their emotional and spiritual growth, which is essential in the face of a terminal illness.
A study in Sweden by Kreicbergs et al. focused on whether parents should discuss death with a terminally ill child. The retrospective study of parents showed that of the 147 parents who talked to their kids about death, none regretted it. Of the 258 parents who didn’t talk to their children about death 27% regretted it. Research indicates that nurses can take a more active role, not only in communicating with the interdisciplinary team providing care, but also encouraging the family unit to openly communicate and discuss the child’s terminal condition.
For change to occur in the palliative care of pediatric patients focus on educating nurses is paramount. Only 2% of the content found in 50 reviewed nursing textbooks that were commonly used was directed at palliative care. Three out of the 50 nursing textbooks were pediatric nursing textbooks. Only 1.3% of the content in pediatric nursing textbooks was related to end of life care (Ferrell et al., 2006). When surveyed nursing faculty stated they felt inadequate in teaching end-of-life material (Ferrell et al., 2006). If communication, continuity of care, documentation and ethical considerations are to be improved future research and advancements in education are needed.
However, the basic principles of palliative care must remain constant. The function of palliative care is not directed at shortening life, but rather directed by the beliefs and values of the child and their family unit. The ability to be flexible when defining a family unit is very important when making difficult decisions regarding the child. The necessity to diagnose early and help families with do-not-resuscitate orders aids the palliative care process. Respite care with an interdisciplinary team ready to facilitate, provide and document goal directed care should be available. Most importantly any child who is diagnosed with a chronic terminal disease should receive access to palliative care.

a. Intervention 1 (Promote access to pediatric palliative care)
i. Disadvantage 1 (Access to proper pediatric palliative care is limited due to lack of insurance)
In 1998 10.6 million children were uninsured. Fourteen percent of the population, some 38.9 million Americans of all ages, were without health insurance coverage in 2001 (Wallman, 2007). In order for pediatric palliative care to be an option, the pediatric client must have the opportunity for health care. Carter et. al. suggests that most pediatric palliative care occurs in the critical care unit (56%) followed by the neonatal intensive care unit (31%). With 55,000 children under the age of twenty children receiving end this critical end of life care, no research has been done to unearth the number of children who are turned away without insurance.
Unfortunately in today’s political climate, powers are at work to limit the opportunity for children to receive care. Recently President Bush vetoed a multi-billion dollar bill that would extend the State Children's Health Insurance Program (Walsh and Yellin, 2007). About two-thirds of the 10 million or so children who would be covered by the bill will have no insurance whatsoever without the program. Funding must be allocated to allow for uninsured pediatric patients to receive palliative care.
ii. Disadvantage 2 (Access to pediatric palliative care is limited due to socioeconomic status and ethnicity)
Health care for subgroups of American children is limited based on the ability to maintain health insurance coverage, access to a usual place to go for healthcare, and experiencing unmet needs due to cost. In a study by the Center for Disease Control (CDC) an estimated 3 million hispanic/latino children are without health insurance (Gulnur & Hanyu, 2004). There is a clear distinction between white and non-white access to proper pediatric health care. Hispanic children are less likely than non-Hispanic white children to have health insurance (Wallman, 2007). In 2005 a survey by the Center for Disease Control found that while 93% of non-Hispanic white children were covered by health insurance, only 88% of African American children and 79% of Hispanic children were covered. With a health care system that doesn’t serve subgroups of American society, how can pediatric palliative care be successful?

b. Intervention 2 (Promote nursing education and resources for palliative care)
i. Disadvantage 1 (Access to proper nursing education creates a knowledge deficit in the application of proper pediatric palliative care)
Given the connection between training and quality of patient care, more time and money needs to be invested in nursing education. Wolfe et al. performed a study surveying parents of children who had died of cancer. The major response was that there was a discrepancy between when the parents understood there was no cure and when the health care team understood there was no cure. Earlier recognition of terminal prognosis led to many benefits including higher ratings of patient care, earlier DNR orders, less long-term cancer therapies and an earlier focus on comfort measures. In order to create the possibility for earlier understanding, educating nurses about pediatric palliative care is paramount.
Unfortunately only 1.3% of the content of pediatric textbooks was related to end of life care (Ferrell et al, 2006). In a review of the top 50 pediatric textbooks, 2% of the content four in the texbooks was focused on end of life care (Ferrell et al, 2006). How are nurses able to appropriately educate patients that are knowledge deficient without the proper knowledge to pass on to the client? Professional education addressing end of life care should be a major priority in bridging the knowledge gap.
ii. Disadvantage 2 (Access to proper supportive care services are not received due to deficient knowledge and cost)
On any given day 15,000 infants, children, adolescents and young adults do not receive
supportive care services while they die from conditions (Himmelstein, 2006). Pediatric palliative care involves a multi-disciplinary health care team. With this fragmentation of services, knowledge about all of the resources available to patients is necessary. Any program needs to provide continuity of care with hospice, interventions to support the family, siblings dealing with bereavement, and support for the staff. With these services comes a price tag that is very expensive. Palliative care medications can cost thousands of dollars a day. Without access to proper resources and government funded programs children will continue to go without care.

References
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