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PEDIATRICS Vol. 106 No. 2 August 2000, pp. 351-357
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ABSTRACT |
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Top
Abstract
Recommendation
References
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This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.
In modern society, we expect children to outlive their
parents. However, 53 000 children in the United States die every year from trauma, lethal congenital conditions, extreme prematurity, heritable disorders, or acquired illness.1 The causes of
death in children are substantially different from the causes of death
in adults; thus, palliative care guidelines that are appropriate for
adults are often inappropriate for children. For children living with
life-threatening or terminal conditions, medical professionals are
obligated to ensure that medical technology is used only when the
benefits for the child outweigh the burdens. An infant or child will
benefit from palliative care when no treatment has been shown to alter
substantially the expected progression toward death.
Palliative care seeks to enhance quality of life in the face of an
ultimately terminal condition. Palliative treatments focus on the
relief of symptoms (eg, pain, dyspnea) and conditions (eg, loneliness)
that cause distress and detract from the child's enjoyment of life. It
also seeks to ensure that bereaved families are able to remain
functional and intact. 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.
Palliative care includes the control of pain and other symptoms and
addresses the psychological, social, or spiritual problems of children
(and their families) living with life-threatening or terminal
conditions.2,3 The goal of palliative care is the
achievement of the best quality of life for patients and their
families, consistent with their values, regardless of the location of
the patient.4 The American Academy of Pediatrics (AAP) has
previously addressed the limitation or withdrawal of life-sustaining
medical treatment.5-7 Specific strategies for palliative
management of pain, dyspnea, agitation, nausea, vomiting, seizures,
depression, anxiety, grief, and other symptoms can be found in other
sources.8-11
The AAP calls for the development of clinical policies and minimum
standards that promote the welfare of infants and children living with
life-threatening or terminal conditions and their families, with the
goal of providing equitable and effective support for curative,
life-prolonging, and palliative care.12 The following
principles serve as the foundation for an integrated model of
palliative care.
Respect for the Dignity of Patients and Families
The provision of palliative care for children includes sensitivity
to and respect for the child's and family's wishes. In consultation
with the child's parent or guardian, the plan of care incorporates
respect for the terminally ill child's preferences concerning testing,
monitoring, and treatment. Consistent with this principle of respect,
information about palliative care should be readily available and
parents may choose to initiate a referral to a pediatric palliative
care program. The needs of families must be attended to both during the
illness and after the child's death to improve their ability to
survive the ordeal intact.
Access to Competent and Compassionate Palliative Care
In addition to alleviating pain and other physical symptoms,
physicians must provide access to therapies that are likely to improve
the child's quality of life.13 Such therapies may include
education, grief and family counseling, peer support, music therapy,
child life intervention or spiritual support for both the patient and
siblings, and appropriate respite care. Respite care, the provision of
care to an ill child (in his or her usual state of health) by qualified
caregivers other than family members, allows the family time to
rest and renew, whether for hours or days, on a schedule, or
intermittently as needed. Families may benefit from the provision of
respite care throughout a child's illness, not only near the end.
Appropriate pediatric respite care is often lacking, but is considered
by many families to be essential for their continued integrity and ability to care for the ill child, siblings, and themselves. Ideally, the patient's pediatrician, family physician, pediatric subspecialist, or surgeon will offer to continue to care for the child, while making a
timely referral to palliative and hospice care. Palliative care
programs should assist the child's usual medical caregivers in
maintaining an ongoing role in the child's care.
Support for the Caregivers
Health care professionals must be supported by the palliative care
team, their colleagues, and institutions in dealing with the child's
dying process and death. Institutional support may include paid funeral
leave, routine counseling with a trained peer or psychologist, and
regularly scheduled remembrance ceremonies or other interventions such
as inviting bereaved families to return and celebrate with staff the
deceased child's life.
Improved Professional and Social Support for Pediatric Palliative
Care
Regulatory, financial, and educational barriers often bar families
from access to pediatric palliative care services. Professional and
public education may foster awareness of the need for, and value of,
pediatric palliative care and lead to efforts to remove bureaucratic
and economic obstacles to its availability.
Continued Improvement of Pediatric Palliative Care Through Research
and Education
Clinical research concerning the effectiveness and benefits of
pediatric palliative care interventions and models of service provision
should be promoted. In addition, information about pediatric palliative
care that is already available must be effectively disseminated and
incorporated into education and practice.
The AAP supports an integrated model of palliative care "in
which the components of palliative care are offered at diagnosis and
continued throughout the course of illness, whether the outcome ends in
cure or death."8 It is difficult to determine which
children may benefit from palliative care. If palliative care is
reserved for children who are dying or have a terminal condition, other
patients who may benefit from these services may not receive them. Time
of death is often difficult to predict. If the nearness of death is
used to determine if children receive palliative care, some children may die without the benefits of individualized family-centered palliative care. With a broader definition that includes children living with a life-threatening condition, all children who need palliative care may benefit. In addition, aspects of an integrated palliative care approach, including symptom management and counseling, may prove beneficial when provided early in the course of a
child's illness.11
Curative treatments seek to reverse the disease process, whereas
palliative treatments focus on relieving symptoms, regardless of their
impact on the underlying disease process. Rigid distinctions between
curative, life-prolonging, and palliative interventions may hinder the
appropriate provision of palliative care to children living with a
terminal condition. Physicians and family members may exhaust all
curative options before they consider palliative care, which delays the
timely introduction of palliative care or referral to palliative care
specialists. Finally, it may be difficult to define individual
therapies as either curative or palliative. For example, mechanical
ventilation often is viewed as a life-prolonging or curative therapy
that should be forgone with palliative care. However, such support,
especially noninvasive forms of positive pressure ventilation, may
provide symptomatic relief from dyspnea and significantly improve a
child's quality of life.
Moreover, the assumption that there is no place for palliative care
until all curative options have been exhausted may interfere with an
early discussion of palliative issues, including limitations of unduly
burdensome interventions at the end of life. Parents and children may
infer that a discussion of issues such as do not resuscitate orders or
comfort care is equivalent to "giving up." Such inferences may
inhibit family members from voicing fears and concerns about the
burdens of life-prolonging interventions and the dying process.
Communication with patients and families about these concerns must be
done with respect and empathy. An explanation of the usefulness of
specific therapies, such as cardiopulmonary resuscitation, and a
discussion of the value of advance directives to ensure that treatments
that have become burdensome are not used, can be comforting to
families. The ability of health care professionals to communicate
difficult messages well can be learned through directed education and
practice.
As no one person can provide all the necessary support for the
child and family, palliative care is best provided using an integrated
interdisciplinary approach. The provision of palliative care for
children involves a partnership between the child, family, parents'
employer(s), teachers, school staff, and health care professionals,
including nurses, chaplains, bereavement counselors, social workers,
primary care physicians, subspecialty physicians, and consultants.
Physical, emotional, psychosocial, and spiritual/existential domains of
distress must be addressed. The child should participate to the fullest
extent possible, given his or her illness experience, developmental
capacities, and level of consciousness. Regardless of the prognosis,
respect for the child requires that he or she be given a
developmentally appropriate description of the condition along with
the expected burdens and benefits of available management options,
while soliciting and listening to the child's
preferences.14 For example, burdens may include time away
from home and friends; benefits may include participation in
research studies based on an altruistic motive.15 The
discussion should focus on what interventions, from the child's and
family's perspective, will be of the most benefit.
Each available diagnostic or therapeutic intervention needs to be
considered within the context of the goals and expectations of the
child and family. The decision to forgo certain treatments means that
only those selected interventions are withheld or withdrawn. As the
goals of therapy change with the progression of the child's condition
or disease, the desirability of some interventions may change. Early
interdisciplinary discussion and planning facilitates the smooth
integration of these changes. The relief of pain and anxiety is an
essential aspect of palliative care, and should be addressed throughout
the course of illness. In some instances, pain relief may free a child
to participate more fully in his or her final days, weeks, or months of
life. Openness to the day-to-day experience of the child and
flexibility in considering all options that may palliate distressing
symptoms and conditions are essential when developing a treatment plan.
The goal is to add life to the child's years, not simply years
to the child's life.
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. Acknowledging grief is often the first step toward
facing the reality of the child's illness. Such acceptance may help
parents focus on the quality of the child's remaining
life.16 Most importantly, the pediatrician needs to
reassure the parents and child of the continued involvement and support
of caring, skilled clinicians throughout the child's life, as well as
after death. Fear of abandonment and isolation, especially during a child's long illness, is a major concern to chronically ill or dying
children and their families.17
The place where death occurs, whether in an intensive care unit,
another area of the hospital, another institution, or at home, may
depend on such factors as the wishes of the child and family, the
physical layout and visitation policies of the alternative sites, the
desire and ability of staff to remain involved, and the availability of
other caregivers such as bereavement counselors and clinicians with
palliative care expertise. Whether death is anticipated or unexpected,
pediatricians are expected to help support parental grief and guilt as
parents struggle to cope with their fundamentally incomprehensible
loss. The family must have the opportunity to carry out important
family, religious, and/or cultural rituals and to hold the child before
and after death.18 Members of the extended family,
friends, primary care physicians, and religious advisors are to be
included, if the family chooses. These individuals can support the
family and each other during this time of crisis and in
bereavement. A handwritten note of sympathy from the pediatrician
or attendance at the funeral can be healing for the family and the
physician. In addition, an opportunity for either organ and/or tissue
donation when feasible, and an explanatory meeting with the
pediatrician to share the results of a limited or full autopsy, may
provide some comfort for a grieving family.
The death of a child who has been chronically ill presents added
challenges. Parents grieve the loss of the expected normal child from
the time of diagnosis of a condition likely to result in disability and
childhood death. Often, these parents may find it difficult to accept
the reality of impending death, perhaps because previous predictions
proved inaccurate. For some parents, continued hope for cure, no matter
how unlikely, may be an important coping mechanism or may conform with
deeply held religious or cultural beliefs.
As many children with chronic, life-shortening illnesses are now
living into adolescence and young adulthood, the pediatrician needs to
acknowledge the child's own recognition of the likelihood of premature
death, to help the child communicate his or her wishes, and to plan for
the child's death.19
The pediatrician should assist parents in understanding and supporting
the siblings of the ill child, all of whom are affected by the child's
condition and eventual death. Parents are to be supported in attending
to the needs of the ill child and siblings while acknowledging the
sadness that results from life-threatening illness. The child should be
reassured that he or she has done nothing wrong and is not responsible
for his or her own illness or that of a sibling. Children should be
encouraged to talk about feelings of anger, sadness, fear, isolation,
and guilt, or to express themselves through art or music
therapy.13,20,21 Pediatricians should provide families
with developmentally appropriate guidance about these difficult
communications, encourage parents of older children and adolescents to
talk together as a family about their feelings, and encourage the
sharing of memories to facilitate bereavement and
healing.22,23 Families may benefit from the pediatrician
or another member of the palliative care team participating in such
family discussions. In these tragic situations, it is also helpful for
the primary care pediatrician to work with the schools and other youth
organizations to assist other children affected by the death of the
child.
The pediatrician and the child's parents may consider the following
factors when discussing death with a child: the disease experience and
developmental level of the child; the child's understanding of and
prior experience with death; the family's religious and cultural
beliefs about death; the child's usual patterns of coping with pain
and sadness; and the expected circumstances of death. The appropriate
time to start a conversation about a child's impending death is
difficult to determine, as cultural beliefs must be respected and
denial by family members may provide some relief from the overwhelming
sense of loss and pain. However, avoiding this conversation ignores the
fact that ill children and their siblings are usually aware of
their condition. Children may maintain silence out of a desire to
protect their parents, while feeling painfully isolated from those they
need most.20,24 Hints that a child wants to talk about
death may be subtle. Open and honest communication is usually most
effective in relieving the child's distress, allowing for mutual
support and personal growth during the final phases of the child's
life.
The decision to forgo life-sustaining medical treatment does not
necessarily imply an intent or choice to hasten the death of a
child.25 Although a child's life may be shortened by
forgoing burdensome interventions or providing adequate sedation in the
face of otherwise unrelieved symptoms, the goal of palliative care is
to optimize the quality of the child's experience rather than hasten
death. On occasion, the relief of severe, progressive symptoms such as pain or dyspnea may require a rapid escalation in the doses of administered analgesics and sedatives. If the child becomes obtunded and less responsive, parents and staff may feel that the medication is
to blame, rather than the disease process If a child or adolescent requests euthanasia, the health care team is
to respond compassionately, with a renewed focus on determining and
alleviating the sources of distress, including perceptions of
abandonment, depression, loneliness, physical symptoms, and
communication problems. Patients and families are never to be prevented
from forgoing burdensome life-sustaining medical treatment under
appropriate circumstances The AAP is concerned about reports of involuntary euthanasia of infants
and young children and of physician-assisted suicide of
adolescents.30-32 The AAP does not support the
practice of physician-assisted suicide or euthanasia for
children.
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.33 Thus, early
consultation with pediatric hospice or palliative care professionals
may be useful. Nevertheless, pediatricians who have established
relationships with a child and family may assist in evaluating proposed
interventions, help monitor the health and well-being of the siblings
and family, and attend to the sometimes subtle and prolonged effects of
grief on the family after the palliative care or hospice program is no
longer involved.
Unfortunately, the majority of children who die have not had the
benefit of palliative care services.34,35 A major factor
impeding pediatric palliative care is that the federal Medicare model
was used to create most state Medicaid hospice benefits.36
The Medicare model of hospice care was designed for adult patients with
cancer, restricting admission to patients with a life expectancy of 6 months or less. This stipulation restricts the availability of hospice
services to children, given the difficulty in predicting length of
survival for many of the childhood diseases that result in premature
death. Some hospice programs may require that patients and families
agree to forgo life-prolonging or curative treatments and perhaps
authorize a do not resuscitate order as a requirement for admission.
Such requirements ignore the fact that many families accept the concept
of hospice care only after a counseling process that is available
within a hospice or palliative care program.34 In
addition, children living with a life-threatening or terminal condition
may be receiving therapies that improve their quality of life, but are
not adequately reimbursed through Medicaid hospice benefits. Treatment
that generally is not reimbursed, for example, includes the use of
newer, more expensive antibiotics for children with cystic fibrosis,
long-term ventilator therapy for children with neuromuscular disorders,
or surgical interventions that may palliate the child's symptoms.
Reimbursement and regulatory policies may also preclude appropriate
hospitalizations for children with life-threatening conditions.
Moreover, families qualifying for Medicaid hospice benefits may lose
other state-provided benefits, including dietary supplements and, more
importantly, skilled home nursing care. Finally, health benefits from
private insurance companies often mimic those from Medicare, and most
do not have specific provisions in place for children.
Although hospice personnel are better equipped than most health care
professionals to address issues surrounding terminal conditions, many
hospice programs lack pediatric expertise and thus deprive children
and their families of the benefits of palliative care. Limited access
to pediatric-specific palliative care and hospice services deprives
children of knowledgeable health care personnel for home-based pain and
symptom management. Many families may have to choose between
life-prolonging or palliative care, and between pediatric or
nonpediatric health care professionals, rather than have the
opportunity to develop an individualized treatment plan that accounts
for the specific needs of the child and family. As a result, the
child living with a life-threatening or terminal condition may suffer
an unnecessarily poor quality of life, leaving surviving family members
with an excessively difficult bereavement.
Excellence in pediatric palliative care is essential for hospitals
and other facilities caring for children. Program development in
pediatric palliative care, along with community outreach and public
education, must be a priority of tertiary care centers serving
children.
Minimum standards of pediatric palliative care must include a mechanism
to ensure a seamless transition between settings, including at least 1 consistent caregiver, the availability of expert pediatric palliative
care assistance 24 hours a day, 365 days a year, and the availability
of an interdisciplinary care team with sufficient expertise to address
the physical, psychosocial, emotional, and spiritual needs of the child
and family. At the minimum, this team will include a physician, nurse,
social worker, spiritual advisor, and child life therapist.
Although palliative care services may not be necessary for all
families, the full range of clinical and educational resources must be
made available. In addition, comprehensive palliative care cannot be
accomplished without a designated care coordinator who can maintain
continuity and ensure the care provided is consistent with the child's
and family's goals despite the intermittent care and high staff
turnover associated with tertiary care centers. The coordinator can
ensure that the plan of care is coordinated with community care
professionals to ensure a realistically achievable plan. Tertiary
centers must provide community caregivers with explicit instruction in
the care of the child, and appropriate pediatric palliative care
consultation must be available 24 hours a day. Creative ways of
coordinating care between the tertiary center and the community may
involve individualized video conferencing or other forms of electronic
communication. Respite for family caregivers and home nursing care are
essential to maintain the integrity of families and the safety and
well-being of the ill child. Finally, bereavement support must be
available to the family, caregivers, and others affected by the death
of a child, for as long as necessary. These essential services must be
reimbursed equitably. The early inclusion of insurance case
managers on the palliative care team may assist in accomplishing some
of these goals.
Nursing, medical, pastoral care, and social work curricula must include
the interdisciplinary management of childhood life-threatening conditions. Practical exercises involving interdisciplinary education, including hospice visits, may best achieve this goal. In addition, attending to the needs of children who experience the death of a
significant adult must be addressed. The requirement to achieve competency in these areas must be reinforced by adding questions on
palliative care to professional certification examinations. The needs
of the medical caregivers who provide pediatric palliative care must be
recognized and actively addressed to allow them to continue to provide
this rewarding but emotionally draining care.
PRINCIPLES FOR PALLIATIVE CARE
AN INTEGRATED MODEL OF PALLIATIVE AND CURATIVE TREATMENT
DEVELOPING A PALLIATIVE CARE PLAN
WORKING WITH PARENTS OF DYING CHILDREN
WORKING WITH CHILDREN
HASTENING DEATH
a misunderstanding that is
reinforced by referring to the procedure as "terminal sedation."26-28 The child's progressive deterioration
and death may be attributable to the disease process, and not the
medication.7,29 Rarely, the relief of progressive symptoms
may require deep sedation. Dying with dignity and without pain or
distress is the primary goal.
regardless of worry that others may view
such a decision as euthanasia or suicide. With the provision of
competent and compassionate palliative care, including the use of
adequate analgesia and sedation for the treatment of rapidly
progressive symptoms, requests to hasten death are generally abandoned.
The informed decision of an adolescent or young adult patient nearing
death to refuse further life-sustaining medical treatment ought to be
respected; such respect does not imply the right of a patient to obtain
assistance to commit suicide.30
BARRIERS TO THE PROVISION OF PEDIATRIC PALLIATIVE CARE
MINIMUM STANDARDS FOR PEDIATRIC PALLIATIVE CARE
RECOMMENDATIONS
Top
Abstract
Recommendation
References
COMMITTEE ON BIOETHICS, 1999-2000
Robert M. Nelson, MD, PhD, Chairperson
Jeffrey R. Botkin, MD, MPH
Eric D. Kodish, MD
Marcia Levetown, MD
John T. Truman, MD
Benjamin S. Wilfond, MD
LIAISONS
Alessandra (Sandi) Kazura, MD
American Academy of Child and Adolescent Psychiatry
Ernest Krug III, MD
American Board of Pediatrics
Peter A. Schwartz, MD
American College of Obstetricians and Gynecologists
SECTION LIAISONS
Donna A. Caniano, MD
Section on Surgery
G. Kevin Donovan, MD, MLA
Section on Bioethics
LEGAL CONSULTANT
Dena S. Davis, JD, PhD
STAFF
Sue Tellez
COMMITTEE ON HOSPITAL CARE, 1999-2000
John M. Neff, MD, Chairperson
David R. Hardy, MD
Paul H. Jewett, MD
John M. Packard, Jr, MD
Joseph A. Snitzer III, MD
Curt M. Steinhart, MD
LIAISONS
Susan Dull, RN, MSN, MBA
National Association of Children's Hospitals and Related
Institutions
Mary O'Connor, MD, MPH
Hospital Accreditation Professional and Technical Advisory
Committee
Elizabeth J. Ostric
American Hospital Association
Sheila Quinn Rucki, RN, PhD
Society of Pediatric Nurses
Eugene Weiner
National Association of Children's Hospitals and Related
Institutions
Jerriann M. Wilson, CCLS, MEd
Association for the Care of Children's Health
Robert Wise, MD
Joint Commission on Accreditation of Healthcare
Organizations
SECTION LIAISONS
Michael D. Klein, MD
Section on Surgery
Theodore Striker, MD
Section on Anesthesiology
STAFF
Stephanie Mucha
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FOOTNOTES |
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The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
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ABBREVIATIONS |
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AAP, American Academy of Pediatrics.
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REFERENCES |
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Top
Abstract
Recommendation
References
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1998.
Pediatrics.
1999;
104:1229-1246 Statement of reaffirmation:
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Child Life Council and Committee on Hospital Care Child Life Services Pediatrics, October 1, 2006; 118(4): 1757 - 1763. [Abstract] [Full Text] [PDF]
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M. R. Robinson, M. M. Thiel, M. M. Backus, and E. C. Meyer Matters of Spirituality at the End of Life in the Pediatric Intensive Care Unit Pediatrics, September 1, 2006; 118(3): e719 - e729. [Abstract] [Full Text] [PDF]
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R. C. Kolarik, G. Walker, and R. M. Arnold Pediatric resident education in palliative care: a needs assessment. Pediatrics, June 1, 2006; 117(6): 1949 - 1954. [Abstract] [Full Text] [PDF]
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K. Fowler, K. Poehling, D. Billheimer, R. Hamilton, H. Wu, J. Mulder, and H. Frangoul Hospice Referral Practices for Children With Cancer: A Survey of Pediatric Oncologists J. Clin. Oncol., March 1, 2006; 24(7): 1099 - 1104. [Abstract] [Full Text] [PDF]
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E. C. Meyer, M. D. Ritholz, J. P. Burns, and R. D. Truog Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents' Priorities and Recommendations Pediatrics, March 1, 2006; 117(3): 649 - 657. [Abstract] [Full Text] [PDF]
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J. W. Mack, J. M. Hilden, J. Watterson, C. Moore, B. Turner, H. E. Grier, J. C. Weeks, and J. Wolfe Parent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer J. Clin. Oncol., December 20, 2005; 23(36): 9155 - 9161. [Abstract] [Full Text] [PDF]
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 I. Fauriel, G. Moutel, N. Duchange, L. Montuclard, M.-L. Moutard, P. Cochat, and C. Herve Decision making concerning life-sustaining treatment in paediatric nephrology: professionals' experiences and values Nephrol. Dial. Transplant., December 1, 2005; 20(12): 2746 - 2750. [Abstract] [Full Text] [PDF]
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 P. Ward-Smith, S. Kirk, M. Hetherington, and C. L. Hubble Having a Child Diagnosed With Cancer: An Assessment of Values From the Mother's Viewpoint Journal of Pediatric Oncology Nursing, November 1, 2005; 22(6): 320 - 327. [Abstract] [PDF]
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 H. B. Siden The Emerging Issue of Euthanasia Arch Pediatr Adolesc Med, September 1, 2005; 159(9): 887 - 889. [Full Text] [PDF]
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M. H. Cohen and K. J. Kemper Complementary Therapies in Pediatrics: A Legal Perspective Pediatrics, March 1, 2005; 115(3): 774 - 780. [Abstract] [Full Text] [PDF]
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M. E. Fallat, J. K. Deshpande, and Section on Surgery, Section on Anesthesia and Pain Do-Not-Resuscitate Orders for Pediatric Patients Who Require Anesthesia and Surgery Pediatrics, December 1, 2004; 114(6): 1686 - 1692. [Abstract] [Full Text] [PDF]
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 C. A. Hurwitz, J. Duncan, and J. Wolfe Caring for the Child With Cancer at the Close of Life: "There Are People Who Make It, and I'm Hoping I'm One of Them" JAMA, November 3, 2004; 292(17): 2141 - 2149. [Abstract] [Full Text] [PDF]
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N. A. Contro, J. Larson, S. Scofield, B. Sourkes, and H. J. Cohen Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care Pediatrics, November 1, 2004; 114(5): 1248 - 1252. [Abstract] [Full Text] [PDF]
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R. B. Noll and S. Fischer Commentary. Health and Behavior CPT Codes: An Opportunity to Revolutionize Reimbursement in Pediatric Psychology J. Pediatr. Psychol., October 1, 2004; 29(7): 571 - 578. [Abstract] [Full Text] [PDF]
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B. S. Carter, M. Howenstein, M. J. Gilmer, P. Throop, D. France, and J. A. Whitlock Circumstances Surrounding the Deaths of Hospitalized Children: Opportunities for Pediatric Palliative Care Pediatrics, September 1, 2004; 114(3): e361 - e366. [Abstract] [Full Text] [PDF]
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C. M. Ulrich, C. Grady, and D. Wendler Palliative Care: A Supportive Adjunct to Pediatric Phase I Clinical Trials for Anticancer Agents? Pediatrics, September 1, 2004; 114(3): 852 - 855. [Full Text] [PDF]
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