The American Society of Pediatric Hematology/Oncology
Statement to
the Institute of Medicine Committee on Care of Children
Who Die and Their Families
Beverly Lange, MD, Vice President, ASPH/O
Division of Oncology, Children's Hospital of Philadelphia, Philadelphia,
PA
The American Society of Pediatric Hematology/Oncology (ASPH/O) commends
the Institute of Medicine’s recognition of need for research, education,
and support for end-of-life care for children and their families. ASPH/O
endorses the analysis and recommendations in 'End-of Life-Care: Special
Issues in Pediatric Oncology' by Hilden et al, which is included in
Improving Palliative Care for Cancer: Summary and Recommendations from
the Institute of Medicine and the National Research Council, (in
press, National Academy Press, www.nap.edu,
2001). ASPH/O also endorses the position of the Committee on
Bioethics and Committee on Hospital Care of the American Academy of
Pediatrics in 'Palliative Care for Children', Pediatrics 106:
351-357, 2000.
End-of-life care and palliative care are of particular concern to the
ASPH/O membership as cancer is the major medical cause of death in
children after the first year of life and many chronic hematologic
diseases are life-shortening conditions associated with acute and chronic
pain. There is great need for further research on symptom control in
children with these disorders.
ASPH/O’s responses to IOM’s specific queries follow.
What are the five most important medical and other needs of gravely ill
or injured children and their families?
Access to a comprehensive, interdisciplinary palliative care program
offering skills and resources to treat all forms of suffering in children
facing death or life-threatening illnesses and their families.
◊ Education about the dying
process, children's perceptions of death, palliative care as an
acceptable therapeutic option either alone or in conjunction with
therapy directed at the underlying illness.
◊ Reimbursement for end-of-life
care including costs associated with administration of Phase I agents,
antibiotics, blood products and delivery of hospital-level care at home
provided by a consistent set of skilled professionals as well as
reimbursement for non-prescription items.
◊ Community-based support
programs for families including respite care and financial, emotional
and physical support near the end of life of a child and for parents,
siblings and involved family members after death.
◊ An expanded pediatric
pharmacopoeia consisting of agents labeled and formulated for children
and directed at controlling symptoms of pain, nausea, vomiting and
reduced appetite, and disordered sleep, movement, breathing, psyche and
stamina.
These needs are unmet for most children dying from cancer. The
shortfalls include the following: lack of end-of-life programs in academic
institutions and local hospitals; lack
of pediatric expertise in established palliative and hospice care programs
for adults; ignorance about the dying process and palliative care among
health care professionals and in the community at large; lack of community
service groups to help families of dying children; hospice reimbursement
guidelines encouraging delayed referrals so that full service benefits are
not achieved; and a pervasive lack of age-specific labeling and pediatric
formulations for most medicines.
In what respects do health care organizations and professionals perform
well or poorly in serving children who die and their families?
In the United States health care providers do not include symptom
control as a priority at the onset of illness. Few facilities and programs
have developed protocols or algorithms for transitioning from a
predominantly curative mode to a palliative mode or for incorporating
palliative interventions at all phases of illness. Hence the transitions
tend to be abrupt rather than gradual and natural and palliative care is
given ad hoc. Few institutions have developed formal palliative
care programs for children. Palliative care is not included in the
curricula for pediatric physicians, nurses, social workers and
psychologists. There is a lack of infrastructure and societal and economic
support for such programs. The dying child is a hostage to fortune.
What steps can providers take to offer more reliable, effective and
compassionate care and how can providers and others provide care that is
consistent, but also flexible?
Formally trained members of a palliative care team can provide
expeditious, sensitive, continuous, and consistent end-of-life care using
established systems, services, protocols and community-based resources.
The team assumes responsibility for communicating to a host of other
providers, ideally including the primary and principal specialist
physicians and other members of the community who have been important to
the child and family. The team can provide 24-hour availability at a
single phone number. The palliative care team needs to meet regularly to
assess patient and family needs as the condition evolves and goals change,
and to assure consistency within the team. Members of the team need a
broad experience and a flexible, non-judgmental perspective. Areas with
low population density may lack the resources to sustain a
multidisciplinary palliative care team. Community-based nurses partnered
with a palliative care team at a tertiary center offer a practical
solution successfully piloted in rural Minnesota.
What financial, cultural and other barriers do families face in
obtaining help that they need for a child and themselves?
The financial barriers include a lack of reimbursement not only for
physician services, but also for the services of members of the
interdisciplinary team who provide care. Current reimbursement is
primarily for direct hands-on care of the child, and even this
reimbursement is inadequate. The social service support essential for
families of children with acute, chronic and fatal illness has been
systematically reduced in hospitals over the last decade. There is also no
means of reimbursing families for essential but non-medical expenses and
time lost from work. The Medicare model of reimbursement for hospice care
of adults with cancer has restricted the scope of hospice services: many
hospices will not continue with care that may improve the quality of life
without extending it. Options that may provide symptom control include;
blood products in a child with bleeding, erythrocytes in a child whose
dominant symptom is fatigue, continuation of chemotherapy in a patient
and/or family who feel emotionally and morally obligated to do all they
can.
A major impediment to the development of regional palliative care teams
is a health care system in which each third party payer uses its own
resources. This is clearly impractical because death in children is too
rare to sustain multiple programs in a community. A plan for pooling
resources with contributions from each provider would resolve this
problem. There are several cultural barriers. Perhaps most potent is the
view that death is an aberrant experience at any age, but especially in
children, which makes acceptance of a fatal outcome particularly difficult
for families. The view that medical science should be able to accomplish
miracles, and that death represents a betrayal of the contract between
health care providers and their patients further creates unachievable
expectations in families. The cultural identification of 'hospice' as
'giving up' creates a cultural barrier to referral to resources when they
are available.
Research and cure constitute the major commitment of charitable
organizations such as the American Cancer Society, the Leukemia and
Lymphoma Society of America, the Sickle Cell Foundation, Hemophilia
Foundation and Falcon Anemia and MDS. Where palliative care ranks among
their priorities is not clear. These organizations, as well as the federal
government, need to consider symptom control as part of their mission.
What are legal or ethical concerns that need attention as part of
efforts to improve end-of-life care and decision making for infants,
children and adolescents?
The rights and wishes of minors need to be respected. Children and
adolescents with serious illnesses have acquired a good understanding of
their diseases, therapies and the implications of treatment and lack of
response. Caregivers and parents need better support to learn to involve
them, in making key therapeutic decisions. The making of a will is rarely
discussed with children and adolescents, the opportunity for making
advanced directives is frequently not offered. Approaches to resolving
divergent goals of patients and family members would facilitate resolution
of conflicts within families. In a society driven primarily by economic
values, there are many providers who question the value of one more day of
life in a child who has no future. Care is compartmentalized into
life-saving activities and palliation. 'Comfort always' has become
'Comfort when all else fails.' A continuous model that delivers treatment
and symptom control simultaneously would seem more appropriate.
How adequate is the current education of health care professionals
and skills for caring for children who die and their families?
There is little education in the end-of-life care or symptom control
in medical schools, in general pediatric training or in pediatric
hematology/oncology fellowships. As concern for how we die is not
restricted to the health care professions, the concepts and values could
be introduced at the undergraduate level in courses in philosophy,
literature, sociology, ethics, law, and religion. Curricula in medical,
nursing, social work schools or any other schools training professionals
who will deal with dying children should include formal training in care
for the dying and the bereaved. Mentored management of a child dying in
the hospital and at home should be part of the curriculum of post-doctoral
fellows in pediatric hematology/oncology.
ASPH/O would add the following to the long list of educational
experiences put forth by Hilden et al:
◊ House calls as part of medical school and pediatric residency
training
◊ Consistent implementation of a formal 'Final Stage Conference'
◊ Online pediatric CME courses such as 'Optimize Cancer Care - The
Importance of Symptom Management Today' which is
sponsored by ASCO
◊ A 1-800 palliative care hotline
◊ Online palliative care technical help for patients, families and
providers
