Palliative Care for Pediatric Patients

Running Head: PALLIATIVE CARE FOR PEDIATRIC PATIENTS 1






Palliative Care for Pediatric Patients
Desiree Marian
University of South Florida
College of Nursing

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Palliative Care for Pediatric Patients
End of life issues for pediatric patients is an unfortunate, yet significant matter that nurses
face. Learning how to handle these situations for the sake of the patient and family is an on-
going process that has yet to be perfected. The studies reviewed in this paper are all important
pieces of literature that are contributing to the research that is invaluable to this subject matter.
The main focus of these articles is the parents’ perceptions, reactions, and feelings
towards the healthcare that their child received and many of these articles indicate how it can be
improved. In order to find the preceding articles, I used the online database Cumulative Index to
Nursing and Allied Health Literature (CINAHL) from the USF Hinks and Elaine Shimberg
Health Sciences Library. The key terms that were used to obtain the articles included: pediatric
palliative care, end of life, and parental perceptions. What will not be reviewed in this paper are
the medical aspects of improvement in this field of study, but rather the psychosocial aspect of
caring for patients and families going through this difficult time.
The first study that I reviewed gave me insight into the world of palliative care for
children. In the study by Morell et al. (2012), the deaths of 111 children in the inpatient setting
were analyzed in a retrospective cohort review. The majority of the children whose medical
records were used in the study were under one year of age, with the median age being 4.8 months
in a range of 1 day old to 20.5 years of age. Almost half of the children were male and the other
half female. Three-quarters of the children were diagnosed with congenital heart disease, while
other diagnoses included cardiomyopathy, pulmonary hypertension, and 8 of the 111 had
undergone a heart transplant. The study compiled an analysis of “end of life care indicators”
which included: location of death, length of hospital stay, and presence of family at bedside at
time of death. The mode of death for the patients was also recorded and analyzed. It was found
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that modes of death for patients were as follows: 68.5% life-support withdrawal, 25.5% active
resuscitation, 6.3% died while receiving palliative care after birth. One of the most valuable
pieces of data that the research collected was that 83% of the patients’ parents were present at the
time of death. In addition, 75% of parents received end of life care education with hospital staff.
This article suggests that highly technical care is needed and used on pediatric patients who are
in critical condition. Furthermore, this study indicates the need for more research on palliative
care needs for children and families in order to improve end of life care (Morell, 2012). I found
that this study was helpful in explaining the circumstances in which children receive palliative
care when diagnosed with a terminal cardiac disease. One weakness that I found in this article,
however, was its insufficient analysis on the parental aspects of this issue. The researchers were
able to ask parents if they received end of life counseling before the death of their child, however
the article failed to go in-depth into this issue. Even though this article was meant to record
patterns in care for children with cardiac disease, it would have been beneficial to further
document patterns in the quality of care that patients received.
Another study that was reviewed pertaining to this topic was conducted by Gilmer,
Foster, Bell, Mudler, and Carter (2012). The purpose of this study was to gain perspective on
parental perceptions on their terminally ill children on the following areas: clinical management,
interdisciplinary support, and pain and symptom management. This was done using a mixed
methods design broken into two separate phases. The first phase used a retrospective cohort
study on medical records of children who died at Monroe Carell Jr. Children’s Hospital. The
second phase used telephone interviews of parents of these children to gather data about their
satisfaction with care. The patients studied were children who were admitted and passed away on
a NICU, PCCU, or general pediatric inpatient unit who stayed more than 24 hours and were
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between the ages of 0-14 years old. Initial response cards were sent to families that fit these
parameters, and 21 parents replied to the initial response card, meaning they were willing and
able to participate in the phone interview. Of these, 15 actually participated and completed the
phone interview for the study. The measures of investigation included a survey for parents
composed of a 10-item Likert scale with 5 options: very satisfied, satisfied, undecided,
dissatisfied, and very dissatisfied regarding health care provider behaviors towards their child’s
care. In addition, three questions pertaining to their child’s end of life care were asked of parents:
were you or your child told of the imminent death, were parental wishes and desires for your
child’s care discussed with you and by whom, and were you provided with spiritual, emotional,
and expressive therapy support? It was found that 100% of parents were satisfied or very
satisfied with availability of health care providers during child’s care. On the other hand, 20% of
parents stated they were not included in decisions regarding their child’s end of life care while
33% of parents reported that they were not even informed that their child was dying. This study’s
future implications for care were that communication among parents and health care providers
could be improved when dealing with a child who is terminally ill, especially in the areas of
decision making for the child and information pertaining the child’s condition. Unlike the
previous study, this study focused on a more parental aspect where their opinions regarding end
of life care for their children were analyzed. I found this to be very helpful for this topic because
in order to improve palliative care for children, their surviving parents need to be interviewed.
This will help gain perspective on what they were going through and how the health care team
can facilitate this difficult time the best way possible. It is important to take note that the parents
in this particular study had issues in the area of decision-making for their terminally ill child
(Gilmer, 2012).
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The issue addressed in the above article led me to search for more information about
decision-making in the case of a terminally ill child receiving palliative care. In the study by
Madrigal et al. (2012), I was able to look more in-depth into this matter. The purpose of this
study was to analyze the decision-making preferences among parents who have children in the
intensive care unit. This study takes into account the enormous amount of stress that parents
undergo while their child is sick and how it impacts their ability for decision-making. A
prospective cohort review approved by the Institutional Review Board was used in order to
obtain the information for this study. Parents were interviewed in person about subjective
experience about their child’s stay in the intensive care unit and their end of life decision-making
preferences. Parents also completed a Positive and Negative Affect Scale (PANAS) regarding
their mood while their child was in the Pediatric intensive care unit. The results showed that 40%
of parents preferred shared decision making with the doctors caring for their children, while
41.1% preferred making final decision on their own. The remaining percentage of parents
reported that they would prefer their child’s doctors to make end of life decisions on their behalf.
The implications for practice for this study is that health care providers can use this information
to determine whether parents want to be the sole decision makers in their child’s care or if they
would like to delegate the decision making process to staff. The statistical analysis of this study
clearly show that 81.1% of parents whose child is dying would prefer to have at least some say in
the decision making process (Madrigal, 2012). It is unfortunate for the 33% of parents from the
previous study who had little or no say in their child’s end of life decision-making (Gilmer,
2012). By combining the results of these two studies, it can be concluded that members of the
health care team can improve in the area of communication with parents of terminally ill children
and have them involved in the end of life care.
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After exploring parental decision-making views, I found it necessary to look into the
emotional aspect of having a child receiving palliative care. In a study by Hexem et al. (2012),
researchers documented the positive and negative emotions parents of children receiving
palliative care experience during their child’s care. This particular study used a prospective
cohort review of parents whose children were treated at The Children’s Hospital of Philadelphia.
The main instrument used was Linguistic Inquiry and Word Count (LIWC) software that
assessed positive and negative emotions by evaluating the number and frequency of positive
emotion words and negative emotions words used. This was then compared to the parents’ affect
in the hospital setting using the Positive and Negative Affect Scale (PANAS). Fifty families of
children with a total of 73 parents completed the study. It was found that there was an inverse
relationship between results from the PANAS and the LIWC. Parents who reported positive
emotional expression during the LIWC interview were more likely to report more negative levels
of effect on the PANAS. What this indicated was that parents who appeared to have positive or
happy affect in the clinical setting had a more negative affect in the self-report. Members of the
health care team can use this data by not taking parents’ affect at face value for possibility of
emotional miscues, leading to improper care and education for parents (Hexem, 2012). Although
this data may not be as urgent as that of the two previous articles discussed, it is still pertinent
and important to the issue at hand.
The final study reviewed was by Hubble et al. (2009). The purpose of this study was to
implement a palliative care team at Children’s Mercy Hospital (Pediatrics Advanced Comfort
Care Team) in order to improve the quality of care given to terminally ill children. The palliative
care team was used for patients exclusively with life-threatening or life-limiting conditions at
CMH. This was a prospective study that analyzed the outcome of the implementation of the
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PACCT over five years and is still ongoing. The outcome of this study was measured by
documentation in the electronic medical record system that provided information about the
communication between patients and the PACCT. The PACCT had three focus areas: clinical,
education, and research. The clinical aspect was creating the team that facilitates comfort for the
children undergoing treatment for terminal illnesses. The results of this study encompassed the
growing acceptance and further research of implementation of a palliative care team for
pediatrics. The team was able to provide adequate education to the patients and families as well
as comfort and individualized care for their illnesses and needs. The program was able to
empower patients and families in making health care decisions and provide respectful care. In
terms of future implications, other organizations should look into implementing this type of
system for their pediatric units in order to provide patient-centered care that is adequate for
patients in their time of need (Hubble, 2009). I found that this particular research study tied
together all the concepts covered by the previous articles discussed. A pediatric palliative care
team can focus on making sure that the patients and their parents are properly taken care of and
their emotional and psychosocial needs are met by providing individualized care.
Experiencing the loss of a child because of an illness is something that cannot be mended
simply by altering the way health care providers initiate care. However, as exhibited by these
studies, there are steps that can be taken in order to make the experience less painful and
individualized to the child and parent. Taking into account the preferences of the parent in terms
of decision making for the child is one of the most important aspects of this. Parents have little to
no control over what is going on with their child, so for health care providers to include them in
the plan of care is essential for parents. Also, as exhibited by the article by Hexem et al. (2012),
the parents’ affect may not be representative of what is truly going on inside their heads.
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Providing a service for parents and children like in the article by Hubble et al. (2009) can be
greatly beneficial in the field of pediatrics. A program like PACCT at other organizations could
potentially bridge the gap between disparities in palliative care for children and provide a more
wholesome experience for both patients and their families.

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References
Gilmer, M., Foster, T., Bell, C., Mudler, J., & Carter, B. (2012). Parental perceptions of care of
children at end of life. American Journal of Hospital, 30(1), 53-58.
Hexem, K., Miller, V., Carroll, K., Faerber, J., & Feudtner, C. (2012). Putting on a happy face:
Emotional expression in parents of children with serious illness. Journal of Pain and
Symptom Management, 45(3), 542-551.
Hubble, R., Ward-Smith, P., Christenson, K., Hutto, C., Korphage, R., & Hubble, C. (2009).
Implementation of a palliative care team in a pediatric hospital. Journal of Pediatric
Health Care, 23(2), 126-131.
Madrigal, V., Carroll, K., Hexem, K., & Faerber, J. (2012). Parental decision making preferences
in the pediatric intensive care unit. Pediatric Critical Care, 40(10), 2876-2882.
Morell, E., Wolfe, J., Scheurer, M., Thiagarajan, R., Morin, C., Beke, D., Smoot, L., & Cheng,
H. (2012). Patterns of care at end of life in children with advanced heart disease. Archives
of Pediatrics and Adolescent Medicine, 166(8), 745-748.