Pain in Pediatric Palliative Care

Evidence-Based Practice Summary Brief

Pain in Pediatric Palliative Care

Paige Abrams, Shauna Fassino, Megan Hofer, Carly Smith

Sonoma State University

PaininPediatricPalliativeCare 2

EVIDENCE-BASED PRACTICE BRIEF

Authors: Paige Abrams, Shauna Fassino, Megan Hofer, Carly Smith

Purpose: The purpose of this evidence-based practice brief is to investigate how pediatric

palliative care influences pain management in children with terminal illnesses.

1. PICOT: In children with terminal illnesses, how does the implementation of pediatric

palliative care affect pain management from the perspective of the patient and the family

compared to a non-palliative approach?

2. Background:

Pediatric palliative care (PPC) is a collaborative approach to care that aims to improve the

quality of life of children with terminal conditions, as well as provide comprehensive care to the

family members involved. The focus is on “prevention and relief of suffering, regardless of the

stage of disease, and comprehensively addresses the physical, psychosocial, or spiritual needs of

the child and family” (WHO, 2008). Cancer, one of the most prevalent life-threatening illnesses,

is the leading cause of death by disease among children in the United States (Ward et al., 2014).

The most distressing symptom of many end-of-life illnesses in children is the experience of pain

and suffering. Not only does this affect the patient a great deal, but it is often the most difficult

aspect of the illness for parents and family members to witness.Timely and appropriate pain

management should be a cornerstone of pediatric palliative care. However, such care is often

lacking and pain is undermanaged. The implementation of pediatric palliative care should be

used more frequently in various care settings, in order to effectively treat the pain associated with

these diseases.

3. Objective:

Our objective is to show that the implementation of pediatric palliative care (PPC) is an effective

intervention to appropriately manage the pain experienced by children with life threatening

illnesses. We also wish to address the benefits of PPC experienced by family and the children’s

primary caregivers.


4. Search for Evidence:

In order to acquire our research articles we searched the CINAHL and PubMed databases. We

gathered articles from peer reviewed medical journals such as The New England Journal of

Medicine, the Journal of Pain and Symptom Management, and the American Journal of Hospice

& Palliative Medicine. Our articles span from year 2000 to 2014 and encompass the various

aspects of pediatric palliative care over the last 15 years. 5. Summary of Research Evidence:

• Chronic Pain Management as a Barrier to Pediatric Palliative Care by Lindsay A.

Thompson, MD, MS, Kimberly Baker, MLIS, Elizabeth Meinert, MD, and Caprice

Knapp, PhD from the American Journal of Hospice & Palliative Medicine:

• This article focused on two children who presented to the hospital with pain from a

chronic illness and gave a summary of what happened during their stay. Then, they

discussed issues with pain management which included: closing the gap between

palliative care and curative care, educating the parents on the use of medications and

increasing the use of palliative care in children with life threatening illnesses.

Level 5

• Symptoms and Suffering at the End of Life in Children with Cancer by Joanne Wolfe,

M.D., M.P.H., Holcombe. Grier, M.D., Neil Klar, PhD., Sarah B. Levin, BA., Jeffrey M.

Ellenbogen, BA., Susanne Salem-Schatz, SC.D., Ezekiel J. Emanuel, M.D., PhD., and

Jane C. Weeks, M.D. from the The New England Journal of Medicine:

• In this study, 103 parents of children who had died from cancer were interviewed about

the end of life experience; data was also taken from patients charts about the types of care

they received and symptoms they experienced in the last month of life. 89% of these

parents felt that their children suffered from at least one symptom in the last month of

life, most commonly fatigue, pain, or dypsnea. Symptom control needs to be more

aggressively addressed in order to ease suffering in the end of life.

Level 3


• Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care by

Nancy A. Contro, LCSW., Judith Larson, PhD., Sarah Scofield, LCSW., Barbara

Sourkes, PhD., and Harvey J. Cohen, MD, PhD from the journal titled Pediatrics:

• A pediatric palliative care program was created after this study was conducted at the

Lucile Salter Packard Children’s Hospital at Stanford. The study focused on interviewing

all hospital staff regarding comfort and expertise in implementation of end of

life/palliative care. Half of the doctors and nurses felt incompetent with performing

palliative care and recommended a program to be implemented.

Level 5

• Pediatric Palliative Care by Bruce P. Himelstein, MD., Joanne M. Hilden, MD., Ann

Morstad Boldt, MS., and David Weissman, MD from the New England Journal of

Medicine:

• This article is an overview of research in palliative care geared towards providing current

information about the current practices. It contains descriptions of palliative care, new

programs that have been implemented and barriers to palliative care. The goal for the

Palliative Care Leadership Center and the Center to Advance Palliative Care is to

increase pediatric palliative care services.

Level 2

• Application of the Integrative Harmony Paradigm and Model by Janice Haley, PhD,

APRN, CPNP, FNP and Clark Ratliffe, PhD, RN from the Issues in Comprehensive

Pediatric Nursing journal:

• In this article, Haley presents here Integrative Harmony Model for the first time and

applies it to a mother and child. The model integrates the stressors parents face and the

strengths they have or need to face these stressors, in order to bring a sense of harmony to

parents who face these challenging experiences.

Level 5


• Discovering the Strength of Parents Whose Children Are at End of Life by Janice Marie

Haley, PhD, CPNP, FNP. and Gay A. Walker, RN, CHPN, CHPPN from Journal of

Hospice & Palliative Nursing:

• In this study, the Integrative Harmony Model was used to create the Pre-Personal/Post-

Personal Strength Rating Scale and the Haley’s Transcultural Strengths Assessment

Interview Guide. These were then used with parents of children with terminal illness to

determine their strengths and stressors.

Level 3

• Availability and Gaps of Pediatric Palliative Care in Low- and Middle-Income Countries:

A Systematic Review of Published Data by Caruso Brown, A. E., Howard, S. C., Baker,

J. N., Ribeiro, R. C., & Lam, C. G. from the Journal Of Palliative Medicine:

• A systematic review of already published data about children in low and middle income

countries was conducted in this article to determine availability, gaps, and under-reported

aspects of pediatric palliative care. They found that this type of care is possible in

impoverished countries but more focus needs to be put on a national health care system,

opioid access, specialized training in the field, and a checklist methodology.

Level 2

• Palliative Care for Children by Committee on Bioethics and Committee on Hospital Care

from the American Academy of Pediatrics:

• This article gives already researched information regarding pediatric palliative care such

as how to work with parents as well as the children and giving recommendations that

should be implemented in pediatric palliative care to improve pain management and

family coping. It also presents the use of an integrative model: using both palliative and

curative care.

Level 4


6. Summary of Expert Evidence from Organizations, Experience and/or Experts in the

Specialty:

The Get Palliative Care website states pediatric palliative care as, “specialized medical care for

children with serious illnesses. It focuses on providing relief from the symptoms, pain, and stress

of a serious illness—whatever the diagnosis” (getpalliativecare.org, 2012). PPC is family-

centered and designed to improve quality of life for the child and the family and help them gain

the strength to carry on with their daily lives. In conjunction with a team of medical

professionals, PPC allows for coordination in care that is in line with the family's values,

traditions and culture while addressing, genetic disorders, cancer, prematurity, neurologic

disorders, heart and lung conditions and many others while alleviating symptoms, such as pain,

dyspnea, fatigue, nausea, loss of appetite, depression, anxiety, seizures, and difficulty sleeping

(getpalliativecare.org, 2012). Starting palliative care as early as possible benefits “both the child

and the family by relieving the symptoms, pain and emotional wear-and-tear that can make

facing a serious illness so difficult” (getpalliativecare.org, 2012). A personal testament to the

benefits of palliative care is evidenced through the story of Jane. Seventeen year old Jane has

cystic fibrosis, and “sometimes has problems with feeling short of breath and anxiety and comes

into the hospital a couple of times a year for treatment. The last time she was in the hospital she

met the pediatric palliative care team. The palliative care team worked with her to teach her

some relaxation techniques and exercises that helped her relax and feel better. ‘Now I look for

them whenever I come to the hospital,’ Jane says, ‘or I call them when I’m not feeling great at

home. I like that they treat me like a real person, not just a kid’” (getpalliativecare.org, 2012).

Jane’s pain and symptoms from cystic fibrosis were relieved from palliative care and is one of

many cases that benefited from the implementation of pediatric palliative care.

Pediatric palliative care also affects family’s lives and reduces stress from taking care of a child

in pain and distress. Another vignette from getaplliativecare.org describes another experience,

“Marley is a four-month-old girl with a twin sister. She was slowly growing and thriving until

about a month ago, when she began to have seizures and trouble breathing. She was hospitalized

and diagnosed with a serious condition related to how her body processes fats and protein. The

intensive care unit (ICU) called in the palliative care team. Marley’s parents wanted to bring

their daughter home as soon as it was safe to discharge her. Along with the neurologists and the

ICU team, the palliative care team helped arrange for Marley to have care at home that focused


on increasing her comfort. The palliative care doctors worked closely with her home-care nurses

and primary neurologist to treat Marley’s symptoms” (getpalliativecare.org, 2012).

Haley’s Integrative Harmony Model suggests seeking harmony between balancing and

identifying personal strengths with experiencing stressful events such as, caring for children with

serious illnesses, in one’s life (Haley & Ratliffe, 2006). Janice Haley believes, “persons are

assumed to be a totality who are constantly interchanging matter and energy with the whole

universe” thus reaching a state of harmony. Haley’s Integrative Harmony Model, suggests an

inclusive, non-dualistic ontological, and epistemological basis to address individuals with a wide

array of disabilities “ (Haley & Ratliffe, 2006). This theory is designed to bring harmony to

caregivers’ lives. It describes the importance of matching one’s strengths with life’s stressors.

The philosophy of this paradigm can potentially “be universally applied to human beings in

infinite situations to promote well-being” (Haley & Ratliffe, 2006). Applying this theory to

pediatric palliative care allows caregivers to assess strengths and areas to improve strengths

when faced with extreme life stressors. These stressors are felt “when a child needing this type of

[life sustaining measures] enters into the everyday lifestyle of a family, [and] the impact is felt

by the entire family” (Haley & Ratliffe, 2006). Staff members recognized a significant lack of

support when nursing and caring for children with life-threatening illnesses, “62% of the

attending physicians, 85% of the residents, 73% of the nurses, and 80% of the other staff

members” were in support for a palliative care team (Contro, et al., 2004). Haley’s Integrative

Harmony Model supports the need for palliative care to help balance the stress of being a

caretaker of a child having a life threatening illness with the caretaker’s strengths, ability to care,

and resilience. “By tapping into one’s strengths, one’s energy is replenished, bringing forth a

sense of connectedness to the present situation and moving the person toward a more balanced

state” which is essential for caretakers of children suffering from life-threatening illnesses (Haley

& Walker, 2016). This validates the need for palliative care to manage pain in pediatric children

facing life-threatening illness. Using Haley’s Transcultural Strength Assessment Interview Guide

for Parent Caregivers, providers can assess areas needing strength to allow for balance as they

experience high stress (Haley & Walker, 2016). The model of “integrated care” combines

curative and palliative care and optimally should combine, the child’s physical needs and and the

family’s needs “such as support, counseling, respite, expensive therapies, and bereavement

counseling” (Thompson et al., 2013). Haley’s Strengths Assessment Interview Guide allows


caretakers to identify areas needing more strength, as a result, palliative care can then be

personalized resulting in personal harmony.

7. Critical Analysis:

Summary:

Pediatric palliative care focuses on providing relief from the symptoms, pain, and stress of a

serious illness. Combined with Haley’s Integrative Harmony Model, palliative care is the link

between balancing extreme stress and personal strengths. By using the integrated model of

palliative care and curative care, pediatric patients will receive better overall treatment, as well as

improved pain management when dealing with symptoms of chronic or terminal illnesses. An

overall theme presented in these articles is to increase the use of pediatric palliative care in order

to improve the lives of pediatric patients’ their families.

Limitations:

Haley’s Transcultural Strengths Assessment Guide was only tested with small inpatient sample

and did not address interventions for how to build strengths. Rising numbers of terminally ill

children being cared for in home, which shows to be beneficial, however our research findings

focus on terminally ill children in inpatient settings.

Strengths:

Generally, palliative care was proven to reduce suffering in patients and patient’s family or

caregivers. Integrative care focuses on balancing stress and strengths to create harmony in a

person, increasing health in caretakers as they continue with life after child passes. Caregivers

and patients are seen as a whole family unit and treated equally in regards to care outside of

medical diagnosis of child. Palliative care programs were implemented to help patients and staff,

continue their education.

Article Summary Hierarchy

of Evidence

Chronic Pain Management as

a Barrier to Pediatric

Palliative Care

This article focused on two children with a chronic illness

and discussed issues with pain management which included

the use of palliative care.

Level 5

Symptoms and Suffering at the

End of Life in Children with

In this study, parents of children who had died from cancer

were interviewed about the end of life experience. Parents

Level 3


Cancer felt that their children suffered from fatigue, pain, or

dyspnea.

Hospital Staff and Family

Perspectives Regarding

Quality of Pediatric Palliative

Care

A pediatric palliative care program was created after this

study was conducted and focused on interviewing all

hospital staff regarding comfort and expertise in

implementation of end of life/palliative care.

Level 5

Pediatric Palliative Care This article is an overview of research in palliative care,

new programs that have been implemented and barriers to

palliative care.

Level 2

Application of the Integrative

Harmony Paradigm and

Model

In this article, Haley presents here Integrative Harmony

Model, which integrates the stressors parents face and the

strengths they have in order to bring a sense of harmony to

parents who face challenging experiences.

Level 5

Discovering the Strength of

Parents Whose Children Are

at End of Life

In this study, the Integrative Harmony Model was used to

create the Pre-Personal/Post-Personal Strength Rating

Scale and the Haley’s Transcultural Strengths Assessment

Interview Guide to be used with parents of children with

terminal illness to determine their strengths and stressors.

Level 3

Availability and Gaps of

Pediatric Palliative Care in

Low- and Middle-Income

Countries: A Systematic

Review of Published Data

A systematic review was conducted in this article to

determine availability, gaps, and under-reported aspects of

pediatric palliative care.

Level 2

Palliative Care for Children This article gives recommendations that should be

implemented in pediatric palliative care to improve pain

management and family coping.

Level 4

8. Apply the Evidence (Recommendations):

1. Better education of parents about medications and end-of-life processes by physicians

and nurses. (Thompson et al., 2013)

o “While acknowledging uncertainty, a pediatrician needs to provide a realistic

appraisal of prognosis and the range of time in which death is likely to occur.

Pediatricians should support parental expression of the disappointment, anger,

grief, and suffering associated with the child's illness.” (American Academy of

Pediatrics, 2000).

PaininPediatricPalliativeCare10

2. Haley’s Transcultural Assessment Guide for Parent Caregivers will serve as an

intervention to better serve family members of children with life-threatening illnesses.

o Haley’s Transcultural Assessment Guide for Parent Caregivers allows caretakers

to identify areas needing more strengths in the face of extreme stress thus as a

result palliative care can then be personalized resulting in personal harmony.

(Haley & Walker, 2016).

3. Health care providers will seek consultations with pediatric palliative care and pain

specialists (Himelstein et al., 2004).

o “Primary care pediatricians may be unfamiliar or uncomfortable with counseling

or managing a child and family in palliative care, given the infrequency of death

in most practices. Thus, early consultation with pediatric hospice or palliative care

professionals may be useful.” (American Academy of Pediatrics, 2000)

o A research study conducted by Wolfe and colleagues found that symptoms were

reported more frequently by parents than by physicians. They concluded that the

majority of children suffered from a great deal of pain and that the treatment of

these symptoms was most often ineffective (Wolfe et al., 2000).

4. Palliative care and respite programs need to be developed and widely available to provide

intensive symptom management and promote the welfare of children living with life-

threatening or terminal conditions. (American Academy of Pediatrics, 2000)

o The majority of children in dire need of palliative care live in low- and middle-

income countries, where curative treatment is less available.

Comprehensive pediatric palliative care provision is possible even in

markedly impoverished settings. Improved national health system support,

specialized training and opioid access are key targets for research and advocacy.

(Caruso et al., 2014).

5. At diagnosis of a life-threatening or terminal condition, it is important to offer an

integrated model that includes palliative and curative care that continues throughout the

course of illness, regardless of the outcome. (American Academy of Pediatrics, 2000).

o “ Following the model of ‘integrated care,’ meaning that curative and palliative

care are integrated together, palliative care encompasses pain and symptom


management while also striving to meet the child’s emotional, spiritual, and

practical need.” (Thompson et al., 2013).

6. Research and development of assessment scales to improve symptom control in children

with critical illnesses.

o “The assessment and management of symptoms and suffering in children are

difficult. Few reliable, valid, and developmentally appropriate methods are

available for measuring the suffering and quality of life of children with life-

threatening illness, and few researchers and research dollars are devoted to

improving the state of symptom control in children (Himelstein et al., 2004).

7. The use of a checklist methodology in order to assess for gaps in pediatric palliative care

which will help guide the programs’ evaluation, reporting, and strengthening (Caruso,

2014).

o “The development of standardized programmatic and regional scorecards

incorporating qualitative and quantitative measures, similar to our checklist, could

facilitate reporting and program development” (Caruso, p. 1376, 2014).

9. Stakeholders/Change Agents:

Pediatric patients that are at the end-stages of life will obviously be the main population to

benefit from our proposal. If there is a greater effort to provide palliative care to these children,

then the they will reap the benefits—as evidenced by lower levels of reported pain. The parent

caregivers of these children will also be affected by this proposal, because the care provided to

their children will ultimately make the end-of-life stages a smoother and less stressful experience

for the patient and the family.

The American Association of Critical-Care Nurses (AACN) is an organization that could be

affected by our proposal. The nurses that are certified in palliative care through this association

would benefit because pediatric care units would require more of these specialized nurses to help

care for terminally ill pediatric patients. Job opportunities and demands for these types of nurses

would increase. The National Hospice and Palliative Care Organization (NHPCO) may be an

another organization that would benefit from our proposal. Their website states that they are,

“committed to improving access to hospice and palliative care for children and their families -

both nationally and internationally”(nhpco.org). Therefore, the NHPCO could be involved in the


effort to ensure the delivery of this type of care to the pediatric patient population. ChiPPS

(Children’s Project on Palliative/Hospice Services) is NHPCO’s pediatric advisory council, and

they could be recruited to help instill improved palliative care services in hospitals and other care

settings.

Palliative care is often provided outside of hospitals, so an increase in use of PPC would create

more available beds in hospital pediatric care units. “Hospice care refers to a package of

palliative care services (including, for example, durable medical equipment, and both diagnostic

and therapeutic interventions), generally provided at a limited per diem rate by a

multidisciplinary group of physicians, nurses, and other personnel, such as chaplains, health

aides, and bereavement counselors.” Although more of these palliative care services will be

required, the cost of implementing these services is cheaper than the cost of implementing life-

sustaining treatments that would otherwise be used for pediatric patients in the hospital

(American Academy of Pediatrics, 2000).

Private organizations that provide end-of-life palliative care in alternative settings outside

of hospitals would benefit from our proposal. There will be an increased demand for these types

of nurses and services, and these organizations will be used to ensure comfort for these terminal

patients in the setting of their own homes.

10. Feasibility:

We believe that parents will not be opposed to improving the education about

medications and end-of-life processes by physicians and nurses. Evidence supports that

“increased knowledge of pain medications and increased provider and family education could

help alleviate children’s pain”, and therefore, strengthening communication among parents and

physicians will be beneficial for the patient and the family (Thompson et al., 2013). In addition,

we feel that parent caregivers will find the Haley’s Strengths Guide for Parent Caregivers to be a

useful tool to help them assess their strengths and increase their confidence in their abilities to

care for their children.

Regarding consultations among physicians and palliative care specialists, issues could

potentially arise from physicians not willing to collaborate with other health professionals in

order to follow an integrated model of care. Physicians could argue that they don’t have time to

work with an additional care team member, and they might just advise the family to consult a


palliative care specialist on their own. However, evidence supports that “pain management is

increasingly effective with comanagement of patients between primary care pediatricians and

specialists” (Thompson et al., 2013). Early interdisciplinary discussion and planning will allow

the care team to improve the quality of care provided for these pediatric patients (American

Academy of Pediatrics, 2000). Ensuring that physicians adhere to the integrated model of

palliative care will improve pain and symptom management, and will also attend to the child’s

emotional, spiritual, and practical needs throughout the course of their illness.

Addressing the gaps in PCC as well as making improvements to the development of

assessment scales regarding symptom control should be something that palliative care

organizations support. The AACN and NHPCO would likely be interested in researching and

creating strategies about how to improve palliative care for these pediatric patients. The

American Academy of Pediatrics states, “The goal is to add life to the child’s years, not

simply years to the child’s life.” Therefore, we believe that the organizations that provide end-of-

life palliative care will support the effort to improve the assessment tools and interventions used

to care for these children and their families.

11. References:

Caruso Brown, A. E., Howard, S. C., Baker, J. N., Ribeiro, R. C., & Lam, C. G. (2014). Reported

Availability and Gaps of Pediatric Palliative Care in Low- and Middle-Income Countries:

A Systematic Review of Published Data. Journal Of Palliative Medicine, 17(12), 1369-

1383 15p. doi:10.1089/jpm.2014.0095

Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2004). Hospital staff and family

perspectives regarding quality of pediatric palliative care. Pediatrics, 114(5), 1248-1252

5p.

Haley, J., & Ratliffe, C. (2006). Application of the integrative harmony paradigm and model.

Issues In Comprehensive Pediatric Nursing, 29(1), 53-68 16p.


Haley, J. , & Walker, G. (2016). Discovering the strength of parents whose children are at end of

life.Journal of Hospice & Palliative Nursing, 18(2), 139-148.

Heath, J., Clarke, N., Donath, S., McCarthy, M., Anderson, V., & Wolfe, J. (2010). Symptoms

and suffering at the end of life in children with cancer: an Australian perspective.

Medical Journal Of Australia, 192(2), 71-75 5p.

Himelstein, B. P., M.D., Hilden, J. M., M.D., Boldt, A. M., M.S., & Weissman, D., M.D. (2004).

Pediatric Palliative Care. Pediatric Palliative Care, 350(17), 1752-1760.

Palliative Care for Children. (2000) American Academy of Pediatrics, Committee on Bioethics

and Committee on Hospital Care. 106 (2) 351-357.

Pediatric Hospice and Palliative Care. Retrieved from

<http://www.nhpco.org/pediatric>

Thompson, L. A., Meinert, E., Baker, K., & Knapp, C. (2013). Chronic Pain Management as a

Barrier to Pediatric Palliative Care. American Journal Of Hospice & Palliative Medicine,

30(8), 764-767 4p. doi:10.1177/1049909112473632

Ward, E., Desantis, C., Robbins, A., Kohler, B., & Jemal, A. (2014). Childhood and adolescent

cancer statistics, 2014. CA: A Cancer Journal For Clinicians, 64(2), 83-103 21p.

doi:10.3322/caac.21219

What Is Pediatric Palliative Care? (2012). Retrieved from

<https://getpalliativecare.org/whatis/pediatric/>

WHO Definition of Palliative Care. (2008) Retrieved from

<http://www.who.int/cancer/palliative/definition/en/>

Pain in Pediatric Palliative Care

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