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The Need for Increased Access to Pediatric Hospice and Palliative Care

Jones, Brian W. MS, CHPCA

doi: 10.1097/DCC.0b013e3182276ded

Pediatric hospice and palliative care continue to be an underutilized model of care. There is much confusion over the differences between hospice and palliative care. Nurses and physicians continue to need specialized training regarding end-of-life care and the pediatric population. Children and their families may needlessly be suffering during the dying process. Many barriers exist that prevent its use among medical professionals. This article discusses some of these barriers and strategies to reduce them. Recent changes in health care law will allow both curative and hospice care to be provided at the same time.

Pediatric hospice and palliative care continue to be underutilized. This article discusses recent changes in health care law that will allow both curative and hospice care to be provided at the same time.

Brian W. Jones, MS, CHPCA,serves as the director of hospice at Mountain States Health Alliance Hospice in Johnson City, Tennessee. He holds a bachelor of science degree from Freed-Hardeman University, a master of science degree from Lubbock Christian University, and a graduate certificate in healthcare administration from Des Moines University.

He is a certified hospice and palliative care administrator and is currently a doctoral student at A. T. Still University's Arizona College of Health Sciences. He has worked for hospices in a variety of leadership roles. He has also taught adjunct courses in medical bioethics, business ethics, values, organizational management, and healthcare management at several different colleges.

The author has disclosed that he has no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

Address correspondence and reprint requests to: Brian W. Jones, MS, CHPCA, Mountain States Health Alliance Hospice, 101 Med Tech Parkway, Suite 100, Johnson City, TN 37604 (

Children represent a medically underserved population. The purpose of this article is to briefly describe pediatric hospital and pediatric palliative care through a review of the literature. Also, this article discusses the barriers to the use of pediatric hospice and pediatric palliative care as well as suggests strategies to reduce these barriers. Focus to educate nurses and doctors will also be presented. Approximately 74 000 children and adolescents die each year in the United States.1 Forty-seven percent of the deaths involve 15- to 24-year-olds. Nine percent come from the 5- to 14-year-old range. Only 6% are aged 1 to 4 years, whereas 38% involve infants younger than 1 year.1 The primary terminal diagnosis in infants involves congenital anomalies, short gestation periods, sudden infant death syndrome, and complications from pregnancy.1 Cancer is the fourth leading cause of death for all children from age 1 to 19 years, and it is the primary cause of disease-related death in children.2 Some of the deaths are preventable, around 27%, whereas 73% are not preventable.3

Thus, approximately at least 70% of childhood deaths could be eligible for specialized end-of-life care. However, some hospice and palliative care programs provide services to those deaths that are deemed preventable.3 In addition, around half a million children suffer from some sort of life-threatening condition every year.4

In 2009, only 14% of hospice programs in America had formally identified pediatric palliative care programs.5,6 However, many may serve pediatric patients without having specialized programs. Last year, only 0.4% of patients in hospice were in the 0- to 24-year age range of the more than 1.5 million patients served overall.5,6 The highest percentage of patients served in that 0-to 24-year age range was composed of 15- to 24-year-olds, representing 35.4% of pediatric patients. Nearly 22% of pediatric patients were younger than 1 year.5,6

Australia has a growing number of palliative services. A committee was formed by nurses to discuss this issue. Nurses (N = 455) were given a quiz to determine their knowledge of palliative care for children. Nurses who worked in oncology or palliative services scored higher than did nurses in other units. The experience of the nurse also was a factor, and these nurses also scored higher on the quiz. However, the authors still emphasize the lack of knowledge about these programs and recommended more education for nurses.6

There are some subtle and not so subtle differences in pediatric hospice care and pediatric palliative care. Traditionally, hospice services have been aimed at individuals who had 6 months left to live (even though other states have different policies) and are usually homebound or in an extended nursing facility, or they may be in a hospital setting. These usually are adults. Palliative care services do not have the same restrictions regarding life expectancy and rejection of aggressive treatment for one's illness. In fact, palliative care patients (both adult and children) who have cancer can continue lifesaving therapies until death.7 It is also true that palliative care has been typically administered in the acute care setting as opposed to one's private residence. Although hospice is certainly palliative in nature, palliative care is not necessarily hospice care.8 Both models emphasize holistic, patient-centered care. They also jointly focus on appropriate pain and symptom management. See the Table for differences of these 2 models of care.



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In a recent survey, medical residents and fellows acknowledged receiving little or no training relative to the spiritual support for dying children and their families. Sadly, those same practitioners in training ranked the lack of spiritual knowledge as being unimportant.4 Such lack of understanding regarding the importance of spiritual care to children at the end of life is disappointing. Both models focus specifically on relieving the physical, psychological, social, emotional, and spiritual suffering of the patient and family. This becomes all the more critical when 60% to 80% of parents of hospitalized children indicated they had unmet spiritual needs.9 Spiritual, emotional, and psychological needs simply go unsatisfied with dying pediatric patients and families.10

This becomes all the more critical when 60% to 80% of parents of hospitalized children indicated they have had unmet spiritual needs.9

Spiritual, emotional, and psychological needs simply go unsatisfied with many dying pediatric patients and their families.8

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Most children who died as a result of a malignancy experienced considerable suffering and pain during the last month of their life.11 One in 8 parents said the pain their children experienced was so intense, they later indicated a desire to hasten their child's death.12 These same parents tend to rate their overall satisfaction rates as high regarding the care their children received. However, in some cases, their children may be experiencing excruciating pain. These parents often believe medical professionals are doing all that they can possibly do and that the pain is just part of the dying process.13 However, many of these parents may be uninformed about pain management. Some parents are not knowledgeable enough to demand increased pain and symptom management for their dying children. The impact of witnessing such a painful death goes beyond the death itself because the death of a child is one of the worst things a parent has to endure. Fifty-seven percent of parents were still moderately affected by their child's pain 4 to 9 yearsafter the child's death.13 In contrast, children who are getting palliative care are suffering less than those who do not receive it.7

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Where Should Death Occur

Although one would equate a peaceful passing with comfort measures at the end of life, many children in the hospital setting typically undergo laboratory tests and diagnostic imaging during the final 48 hours of their lives, hardly a combination that would allow for tranquil death.10 Currently, symptom management for pediatric patients is simply insufficient at the end of life.8 Some studies continue to show that there is simply too much unrelieved pain for pediatric patients who are dying.13,14 Both hospice and palliative care present a shift in focus for children with terminal illness. One important shift involves the option to die at home. Families desire to experience their child's death at home.10 Home is often deemed the best place for many for the death of a child.8 Parent and sibling adjustments to death are better handled when the child dies at home.15 There have been some studies that have presented differing thoughts. One indicated that although the families of children with cancer preferred the death of the child to occur at home, those without a cancer diagnosis preferred a hospital setting for death.16 In either case, hospice and palliative care can be provided wherever the patient desires to die, at home or in the hospital.

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If most families prefer for their children to die at home, then why is it not happening? If children and families continue to have unmet spiritual needs at the end of life, then why is this still occurring? If children and infants are experiencing substantial pain when they die, why are not medical professionals calling for the intervention of hospice and palliative care more often? Unfortunately, there are several barriers that exist that prevent a fuller utilization of specialized10 end-of-life care for the pediatric population. The World Health Organization has weighed in on pediatric palliative care, indicating that children must receive appropriate care of physical, psychological, and social distress.17

First, there is a need for improved nurse-physician education.18 We see that pediatric oncologists in particular are uncomfortable with end-of-life issues.11 Not surprising to that discomfort is that 75% of pediatric oncologists indicate that they lack formal training in end-of-life care.11 Pediatric physician trainees indicate at most that they have moderate levels of competence in palliative care.4 Many physicians simply are uneducated regarding the distinctions between hospice and palliative care for children.19 There is a lack of awareness regarding the availability of palliative care to patients who do not have a terminal illness but are still experiencing pain. Still some doctors and nurses are still uncomfortable having the talk regarding the need for end-of-life interventions such as hospice and palliative care.10

Second, hospice programs utilize Medicare local coverage determinations as guidelines to indicate who is appropriate for hospice care. These local coverage determinations were developed in the 1970s and were based on adult cancer properties (N = 20).20 They are fairly hard and fast regarding a fixed 6-month life expectancy and were designed with the intent that the patient forgoes curative treatment. Children and adults with terminal illness do not progress identically in their disease types.21 The Medicare hospice benefit, upon which most Medicaid and private insurances have modeled their services, alienates the pediatric population.7

Third, as alluded to earlier, most doctors and some nurses cannot differentiate between palliative and hospice care.14 Understanding that palliative care can continue along with aggressive treatment options is key and understanding that both can occur at the same time. However, the reimbursement for palliative care is more fragmentary than hospice care, which is more comprehensive in scope.14 Also, closely related are the preconceived negative notions between the 2 terms. Hospice care is often viewed as an option only for imminently dying senior citizens. The misconceptions in utilization among that population are already problematic, not to mention its use among children. Palliative care carries its own problems. It is often unidentifiable by laypeople and misunderstood by providers. A softer term such as supportive care may help increase referrals.14

In regard to actual referrals to end-of-life care, 50% of pediatricians have never made a referral to hospice care.14 When referrals are made, early referrals are the exception to the rule. Rarely is a patient referred to hospice upon the initial terminal diagnosis.14 Palliative care is often not discussed until there is a relapse or when a relapse fails, again not upon initial diagnosis. Yet, a recent study at Vanderbilt indicated that a majority of children in the intensive care unit could have actually benefited from palliative care services.2

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Hospice and palliative care present so many opportunities to help pediatric patients, families, and providers. Although obstacles continue to hamper their full utilization, there are some things that can be done to increase usage and their programs. Not only will increased utilization positively impact both patient and provider, but it will also achieve a full continuum of care, even though with pediatric patients the continuum may be much shorter than desired.

First, the hospice benefit needs to be adjusted to allow for curative treatments for the pediatric population. Currently, there are Medicaid waiver programs that exist in a few states, allowing aggressive treatments to continue alongside hospice care.7 Daniel's Care in Lexington, Kentucky, is an example of such a program (Hospice of the Bluegrass).21 Daniel's Care is a program started by a young boy who died of cancer. Before his death, he collected toys for other children in the hospital. This has served as a model for other programs. In 2010, the Patient Protection and Affordable Care Act allows children to continue seeking curative treatment options for their terminal illness while receiving hospice care. Currently, states are trying to determine how to implement this section of the health care act. However, once fully implemented across the United States, it has the potential to dramatically affect hospice care for the pediatric population.

It is abundantly clear that more nurse-physician education is needed. There needs to be a drastic change in relation to pain management and children.7 There needs to be formal provider education for pediatric oncologists.11 This could be part of their residency program or part of their formal medical education. Several high-profile groups have developed specific curriculum to assist providers to have an enhanced knowledge base related to suffering and dying children.13 Finally, it has been recommended that to be most successful in advocating for end-of-life care, residents and fellows need training in real time, and nurses need to work together with the child and the parents.6,22 Perhaps, the critical care nurse could lead the role in this and establish guidelines for health care professionals to follow. They must include a discussion of pediatric hospice, pediatric palliative care, the need for further education, and how to talk with families of children with terminal illness.6,22

Again, a change in terms may help alter perceptions and utilization of hospice and palliative care, in particular for pediatric populations. Although hospice may carry certain negative connotations of a dying elderly person to parents of a 2-year-old, certainly the term supportive care has a less negative connotation. Truly palliative care places emphasis on holistic care that is supportive in nature. Terminology does matter, and it especially matters when it confronts already frightened children and their parents.

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Although not the main emphasis of hospice and palliative care, there is an element of cost savings involved when we shift the emphasis to comfort and quality care.23 Studies continue to show that families prefer the services of hospice and palliative care.21 In fact, in retrospect, parents indicated being upset when not offered the choice.20 This cost savings may be the impetus for an increased push for such services at hospitals and in acute care settings. Although saving health care dollars is always desirable, it is most critical that parents and children are receiving medical, spiritual, comfort, and psychological care when they need it the most.

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This was only a brief summary of both pediatric hospice and pediatric palliative care. Both nurses and physicians need to receive more education on these topics.22,24 This care simply must be provided by nurses and physicians to assist children with terminal illness and their families and to help ease their pain.

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Death of children; Pediatric hospice; Pediatric palliative care

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