Statement to the Institute of Medicine Committee on Children Who Die and their Families

From:  The Pediatric Special Interest Group, representing the American Academy of Hospice and Palliative Medicine (AAHPM)

Authors: Bruce P. Himelstein, M.D., Sarah Friebert, M.D., Jeanne Lewandowski, M.D., Suzanne Toce, M.D., Kate Eastman, Psy.D, LCSW; Dennis Johnson, M.D., Javier Kane, M.D.

Date: September, 2001

Introduction

The American Academy of Hospice and Palliative Medicine (AAHPM) is dedicated to the advancement of palliative care. Palliative medicine is the art and science of child-focused, family-oriented, relationship-centered medical care aimed at enhancing quality of life and minimizing suffering.  Palliative care is a model of caring for patients and their families who suffer from life-threatening illnesses.  Palliative care focuses on alleviating pain and other symptoms of suffering but also attends to the spiritual, emotional, psychosocial and physical needs of both the patient and the family. Palliative care aims to improve the quality of life of seriously ill children and their families throughout the disease experience and recognizes that helping patients achieve a peaceful death is one of the most important and rewarding services that a healthcare professional can provide. Palliative care completes the developmental circle of competent, compassionate care from birth to death, neither hastening nor prolonging death. Inherent in this definition is the possibility of delivering palliative care in partnership with curative care for children with life-limiting illness, or for children who may not die. The Academy promotes the advancement of palliative care through research and through public and professional education.

AAHPM recognizes that children are whole persons worthy of valuable palliative care services, that the death of a child is more difficult to comprehend than that of an adult, and that the principles, practice, health care delivery systems and venues of care created for dying adults may not be applicable to children.  Palliative care services will improve the experience of the dying child, enhance the family’s well being through grieving, and will help both the medical and lay communities learn the value of dying well.

To address the exceptional needs of dying children, a pediatric special interest group has been formed within AAHPM, consisting of members who have expertise in pediatric palliative care.  This group can provide unique insight to the Institute of Medicine in studying the care provided to children who die and their families.  We are pleased to have the opportunity to present our input in this important effort put forth by the Institute of Medicine.  What follows is our groups’ response to the questions posed by the Institute.

RESPONSE TO THE IOM COMMITTEE

1.         In view of your organization’s specific interests and concerns, what are the five most important medical and other needs of gravely ill or injured children and their families?  To what extent are these needs met?  What are the most important shortfalls?

·        Management of pain and suffering by professionals trained in the care of the dying child

We currently depend upon providers with minimal or no training in pediatric palliative medicine to care for dying children. In the community hospice model, children may be cared for by adult providers with limited pediatric experience; in tertiary pediatric institutions, children are being cared for by experts in pediatric care with limited skills in palliative medicine, hospice philosophy and end-of-life care. These professionals often experience a sense of isolation. Lack of educational resources and opportunities for specialized training in pediatric palliative care contribute to the professional’s inability to provide optimal care. Furthermore, caregivers fail to recognize effective management of physical symptomatology as only part of a broader perspective of palliative care.  Great opportunities for better pain and symptom management and for emotional and spiritual support are being overlooked; patients and families are suffering and quality of life is suboptimal.  Hospice and palliative care providers from all disciplines, not just physicians, must be trained in the care of life-threatened children.

At a minimum, new pain and symptom assessment and management algorithms, pediatric pain scales, and treatment modalities that are acceptable to the child and family for pain and symptom management must be universal in their utilization in palliative care and hospice settings, as well as in the pediatric health care community. In addition, health care professionals must be familiar with ethical medical decision making, particularly regarding the use of opiates to alleviate suffering and issues related to withholding and withdrawing medical treatments including the use of artificial life-prolonging measures, medically provided hydration and nutrition and other invasive medical procedures.

There is no standard curriculum for pediatric palliative care, and consistent high quality training standards regarding end-of-life care do not exist. In addition to changes in practice, research in palliative care must be expanded so that children receive state-of-the-art care beyond simple extrapolation from adult therapy. Evidence-based research in palliative care is needed, in particular to begin to generate pediatric-specific data regarding symptom control, family coping and health care systems delivery and outcomes.

·        Preparation of child, family, and community in facing life-limiting illness and death by personnel trained in the care of children

The hope for cure must be balanced with hope for the best possible outcome.  Comprehensive services aimed at providing best possible outcomes need to be provided by personnel fluent in the normal child’s developmental understanding of death and dying, serious illness, and threat to the personal integrity of the child.  Further, these personnel must be fluent in means of both verbal and non-verbal communication with children in order to be able to introduce palliative care at the beginning of an illness trajectory.  Interdisciplinary contributions from pediatric specialists such as child life, social services, art therapy, music therapy, child psychology, child psychiatry, behavioral pediatrics, and spiritual care providers, for example, are central to giving families, children, and hospice/palliative care providers the tools necessary to cope with serious illness and to prepare for death.

Support should be available for the patient, family, school and community.  These services are typically not covered under current reimbursement systems, and most hospices do not have access to this level of expertise. Particular attention must be given to the need of support for the child and family at the time of death and during bereavement.

·        Continuity of care, decreased fragmentation and optimized communication across sites of care delivery in developmentally-appropriate ways that preserve control and efficacy for parents and children The course of serious illness from the time of diagnosis to death is marked by uncertainty, decision points are ambiguous and the process is difficult for all involved.  In addition, the lack of a “medical home” for many patients and families interferes with their ability to navigate the health care system successfully and effectively through the course of a life-limiting illness and to maintain control in the midst of chaos.  Children and their families need continuous and seamless medical and psychospiritual care in a coordinated effort among members of multiple medical specialties and disciplines.  The current health care and reimbursement system fragments continuity that in turn limits effective communication with families and among caregivers, interferes with the formation of supportive relationships with care providers, and builds distrust in the system.  The loss of continuity is detrimental to the process of gradual transition in the goals of care, from treatment with curative intent, to life-prolongation, to comfort care, to bereavement counseling that patients and families must endure.

In regard to hospice in particular, the hospice benefit often provides families with choice limitations. For example, admission to hospice often means discontinuation of inpatient care in a familiar pediatric setting by current health care providers. Moreover, life-prolonging measures in the face of incurable illness such as palliative radiotherapy or chemotherapy, transfusion therapy, artificial hydration and nutrition, in-home nursing services, and technology-dependent needs, to name a few, may not be covered under the hospice benefit, or may not be reimbursable.

Children and adults die differently – many children have long-term progressive conditions that require many of these services to maintain quality of life. Families are given an either/or choice: continue these services, or receive expert hospice and palliative care.  Legislative efforts, not just demonstration programs (such as the Program for All-Inclusive Care for Children, the HCFA-funded PACC program), are required to change hospice and home care regulations to permit the co-existence of and reimbursement for multiple essential services for the life-threatened child without the requirement of a 6 months or less diagnosis.  For those children who reach hospice, there is currently no standard of care or standard mechanism for continued communication between the primary care team and hospice. This disconnection robs families of a critical element in pediatric palliative care: the continued presence of the primary care team. Additional avenues of communication must be maintained and promoted with hospital, primary medical teams, hospice, homecare, emergency services, emergency room, coroners and funeral homes and the community at large. This continuity care team facilitates development of a plan of care that meets the sometimes-changing goals of treatment as the child moves through the course of illness.

·        Respite care for families, utilization of community resources and normalization of life

Caring for the dying child is an enormous burden to families; the stress and the physical, emotional, and spiritual demands on the caregivers may be extreme. Family relationships are often disrupted. Time at work is lost and the family may experience financial strain.  The child’s illness affects the entire family dynamic and its relationship with the community at large. Respite care provides the opportunity for caregivers to take a break from this distress.  However, respite care, a central element of the hospice benefit, is virtually unobtainable for children.  Providing 24-hour continuous in-home nursing, often the best option from a quality of life perspective, may not be feasible due to staffing, medical equipment and service needs, or reimbursement issues.  Inpatient facilities appropriate for the child need to be developed and expanded; sending children to nursing homes is rarely appropriate.  Hospitalization at the child’s “medical home,” with staff who are usually familiar with and bonded to the chronically ill child, may be optimal but is reimbursed so poorly that most facilities will not provide this care.

Seriously ill children need a stimulating environment.  If this is not attainable at home, children may need exposure to a variety of experiences provided by school, health care facilities or other care providers.  It is helpful that school age children attend school for as long as possible; this can be achieved by the provision of treatment and nursing care at school.  Continuing efforts in education at home is important for those children unable to attend school and should be supported.  For older children who have left school, maintaining a stimulating environment may be achieved through social and recreational activities according to each child’s developmental level.

Community members are often an untapped resource for supporting these families. In addition to respite care, families of critically ill children have a great number of concrete needs that may go unmet. Housing, transportation, childcare and other daily needs contribute greatly to the level of stress for these families. Organizing community service organizations, spiritual care communities and neighborhood groups to provide for these concrete needs can be an important aspect of providing essential support for these families.

·        Education of parents and families regarding practical and financial concerns, expectations for end-of-life care, available services, how to advocate for their needs and how to navigate difficult decisions

Families and children are not educated about their choices in healthcare services, location of care, assent for therapy, alternatives and choices in aggressive curative therapy, funeral arrangements, complex decision making and advanced care planning. Providers often lack the information or the courage to discuss these difficult topics with families.  Providers need to be given the tools to provide anticipatory guidance for these challenging patients.  Parents are not provided with the necessary communication tools to advocate for the best quality of life for their child. Hospice and palliative care professionals may have an enormous role to play in this regard, but often do not have access to patients and families until it is too late to make a difference.

Parents of seriously ill and dying children often experience financial and employment problems, and lack of social support.  Their children have special needs not only in hospitals but also in their schools, homes and communities at large.  Access to health care system, government and community entitlements is essential in these circumstances and must be facilitated.

2.                  In what respects do health care organizations (e.g., hospitals, home care agencies, emergency medical services) and professionals (e.g., physicians, nurses, social workers, chaplains) perform well or poorly in serving children who die and their families?  How well are transitions in the goals, providers, settings, or types of care handled or coordinated?

Depending upon the information source, between 1-10% of children who die enter hospice care. There is no consistent data regarding upstream access to palliative care, although some children’s hospitals are developing palliative care consultation teams. As a result of access problems to hospice and palliative care, pain and suffering increases and quality of life is adversely affected. 

For many reasons hospice care may not currently be the ideal model of health care delivery for children.  However, there are no readily available alternatives.  Some of the reasons for this barrier to universal access include but are not limited to:

·        Lack of child, family and provider education about choices regarding treatment alternatives that include a variety of reasonable palliative care goals, leading to a tendency for providers to say the family is “not ready.” Identification of the child’s illness as incurable is often delayed and communication with patients and families about death and dying issues often falters. Many families and health care providers perceive “hospice” to be “giving up.” The option of hospice care is frequently presented to families by staff not familiar with hospice and palliative care services. Primary teams inexperienced in hospice and palliative care often must provide less-than-ideal care or transfer their dying patients to providers unfamiliar to the patient and their family at the time in the illness trajectory when they need the most support.

·        Patients suffering from incurable illness who are willing to continue interventions with the goal to prolong a life of good quality are likely to be ineligible for hospice services and often do not receive care from those who presumably have the most expertise in the provision of comfort and psychosocial-spiritual support of the dying. Also, regulatory guidelines such as a 6-month prognostic rule that is often impossible to define or the inability to coordinate hospice benefits with in-home nursing or other types of ancillary care provokes care fragmentation.  Providers may be reluctant to enroll children of uncertain prognosis in hospice for fear of using up the benefit, as many payers do have lifetime limits of coverage for end-of-life services.

·        Poor reimbursement, in particular the hospice per-diem rates, makes hospice care impossible for children with any kind of higher-cost care. Poor reimbursement of pre-hospice palliative care services offered by physicians, nurses, counselors, chaplains and other allied health care professionals is also an important constraint in the delivery of these services to those in need.

·        Unavailability of hospice personnel with pediatric experience and expertise.

·        Lack of properly trained faculty to teach pediatric palliative care in academic institutions. 

·        Many children die from acute causes such as trauma or accidents. Children dying a sudden, unanticipated death are ineligible for hospice services, yet their families are most in need of expert ongoing psychospiritual support and care. In addition acute trajectories of dying, for example septic shock, can still be identified and palliative care principles can be applied during what time is available prior to death.

3.                  What steps can care providers take to offer more reliable, effective, and compassionate care?  How can health care providers and others provide care that is consistent but also flexible in helping children and families with different medical and other needs?

·        Palliative care curriculum content needs to be integrated into the training, board examinations and licensing requirements of all disciplines involved in the care of children. Minimum competencies in care of life-threatened children must be established for all pediatric providers, as well as for all hospice directors and other adult-trained hospice and palliative care professionals.  The pediatric content in the certifying examination of the American Board of Hospice and Palliative Medicine must be increased.  Efforts to certify fellowship training in hospice and palliative medicine with a pediatric track through ACGME must be supported. Development of a unified pediatric curriculum including a pediatric version of the EPEC (Education for Physicians on End-of-Life Care) curriculum must be supported. Non-medical personnel must also be educated in pediatric end-of-life care.  As supported by reports from bereaved parents, community providers including spiritual care personnel often lack appropriate specialized pediatric training, which limits both their usefulness and their acceptance by families.

·        Pediatric centers of excellence for palliative care training must be created.  We recognize that palliative care competencies are acquired by both cognitive and experiential learning. Clinical palliative care services where students, residents and health care professionals can learn compassion and palliative care competencies at the bedside must be developed.

·        Create flexible end-of-life benefits for children that allow coordination of care between hospitals, palliative care services, home care agencies, nursing agencies and hospices.  For example, wider availability of concurrent care waivers, supporting in-home nursing hours along with the comprehensive services provided under the hospice benefit, are needed.

·        Earlier integration of hospice and palliative care principles and teams into acute care settings will enable smoother transitions in the goals of care. Professionals trained in pediatric palliative care principles, including appropriately-trained hospice and palliative care professionals, are the experts best suited to help families and primary care teams make decisions regarding transitions in goals and site of care.

·        Expand funding for new models of care delivery, including significantly increased appropriations for the HCFA Program for All-Inclusive Care for Children (PACC). Funding for rigorous outcomes research must be partnered with clinical program development.

·        Reimburse time and expense for team communication for providers and for hospice and palliative care professionals, including child life, art therapy, music therapy, social services, child psychology and spiritual care providers. Time for family and sibling support must be reimbursed as well.

·        Promote a focus on advanced illness care coordination and facilitation of advance care planning for children with life-threatening illness, regardless of the site of care delivery.

4.                  What financial, cultural, or other barriers do families face in obtaining the help they need for their child and themselves?  What specific steps can public or private organizations (including service providers and payers) take to reduce these barriers?

·        Society does not recognize or admit that children die

·        Society struggles to understand the mysteries of suffering and death

·        Deficit in education of health care professionals in all disciplines regarding aspects of pediatric palliative medicine and end-of-life care.

·        Health professionals may deny that children die, or wait until it is too late to refer for comprehensive hospice and palliative care

·        Perception that hospice=death, not that hospice=quality of life, a philosophy of care

·        Hospice may not be accepted by some cultural and/or religious communities

·        Financial, regulatory and educational barriers as discussed above, in particular inadequate funding for multidisciplinary palliative care across the care continuum

·        Appropriate resources may not be available in their communities

The solutions will require changing the culture in the United States from one of cure at all cost to one of best possible outcome. Such a radical frameshift will require the cooperative and organized efforts of multiple agencies, legislators, providers, payers and patient/family advocates to improve the care of dying children and their families.  Given the relative rarity of death in childhood, a unifying oversight body should be created, endorsed and funded to direct such an effort.

5.                  What legal or ethical concerns need attention as part of efforts to improve end-of-life care and decision-making for infants, children, and adolescents?

·        It is important to move palliative care with attention to the physical, psychosocial and spiritual needs of the child and family upstream in health care delivery, soon after the diagnosis of a potentially life-limiting condition. This will often be concurrent with life-prolonging treatment. As goals of treatment change, the health care team, child and family can develop a plan of care consistent with the goals.

·        A major stumbling block for appropriate hospice and palliative care for children is the establishment of “Do Not Resuscitate” or “DNR” orders.  Many families are ready for hospice and palliative care before an effort is made to establish the DNR status; one of the areas in which hospice professionals can assist children and families is in advanced care planning including DNR orders.  The requirement for DNR orders for entry into hospice, therefore, is an important barrier.  The response to and interpretation of DNR orders also varies widely across clinical settings, including hospital, home and school.  Non-recognition of DNR orders and the lack of standardized pathways of response from emergency medical services is another barrier to palliative care for children. 

·        Terminally ill children as well as children living with chronic, life-limiting diseases, need to have a stronger voice in medical decision-making.  The child should participate as appropriate to his or her developmental level. Further efforts are necessary to determine the individual child’s competency and capacity to participate in decisions.  The “legal” age of consent of 18 years may not be appropriate for all children; bioethicists have stressed that the children as young as 14 years or younger in some cases may be appropriately involved in consent.  The legal system needs to further recognize and validate the participation of children as young as 8 years of age in appropriate circumstances in medical decision making (the concept of “assent’).

·        The “Baby Doe” regulations and other regulations concerning issues of withdrawal of support, including artificial hydration and nutrition, appropriate management of pain including palliative sedation are often misinterpreted.  Providers may not act according to best medical, ethical, spiritual and moral judgment for fear of litigation resulting from these regulations.  Hospice and palliative care providers must seek revision, redefinition and clarification of these regulations with regards to dying children and must be supported in providing the most clinically appropriate care for the child regardless of controversy.

·        We need to advocate for humane and compassionate symptom control in populations of vulnerable children, particularly those whose caregivers resist or obstruct appropriate care

·        As many children die in the hospital, education of caregivers and regulatory quality assurance programs (e.g. JCAHO) should mandate hospitals to develop pain and palliative care programs. [JK1] 

6.                  How adequate is the current education of health care professionals in skills for caring for children who die and their families?  What aspects of training need to be improved?  Please propose any innovative or successful strategies or curricula for improved medical and related education.

Please see commentary above.

7.                  Are there other issues or recommendations (e.g., role of faith communities, directions for health research) that you believe need attention?

·        There is an urgent need for unification and a single voice that can speak for the dying child.  Many organizations such as NHPCO, AAP, AAHPM and ASCO, to name a few, are involved in the effort, but funding and resources are sorely needed to facilitate collaborative efforts between and amongst organizations to bring about systems change.

·        Evidence-based quantitative and qualitative research will insure that clinical, educational and health systems efforts in pediatric palliative care are rigorously connected with quality outcomes.