Palliative Care Toolkit: Background

An infant dies in nearly 19,000 families annually in the United States[1]. Although the Texas infant death rate of 6.2% in 2008 is currently less than the national average of 6.6%[2], there are still a large number of infant deaths in the state. More children die immediately prior to birth or in the neonatal period than at any other time in childhood[3, 4]. In fact, 34% of all childhood deaths occur in the neonatal period[5].

Advances in prenatal care and diagnostic testing have changed the nature of decisions families make when they have an unborn or newly born infant with a life-limiting or life-threatening condition[5]. Pediatric palliative care has progressed in recent years with the development of new programs and models of care[6]. In the last 20 years there has been growing recognition of the importance of palliative and end-of-life care for the unborn[7-13] or newborns with life-limiting or life-threatening conditions[14-18]. Perinatal palliative care presents a new paradigm that emphasizes living fully in the time that families have with their baby[19-21], and is an ongoing process which supports the family from diagnosis throughout bereavement[7, 11, 13, 19, 20].

Pediatric palliative care public health initiatives are gaining momentum[22, 23]. Numerous governing bodies including the American Academy of Pediatrics (AAP), the Institute of Medicine, and the World Health Organization have recognized the importance of this type of care[5, 24-28]. In its 2000 statement on Pediatric Palliative Care which was reaffirmed in 2007, the AAP identified that community outreach and public education must be a priority of tertiary care centers serving children. In addition, the Academy states that all general and subspecialty pediatricians, family physicians, pain specialists, and pediatric surgeons should become familiar and comfortable with the provision of palliative care to children[24].

Growing evidence suggests that families of children with life-threatening conditions benefit from palliative care[29-31], and that earlier discussions and initiation can improve symptom management and quality of life[31, 32], as well as benefiting later bereavement[30]. In contrast, poorly-prepared families tend to choose more costly aggressive care at the end of life[31, 33].

The AAP describes the principles of palliative care for children, which include pain control, as well as the management of psychological, emotional, social, and spiritual concerns of children and families living with life-threatening or terminal conditions. 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. Palliative care should utilize an integrated interdisciplinary approach, based on:

  1. Respect for the dignity of patients and families,
  2. Access to competent and compassionate palliative care,
  3. Support for caregivers,
  4. Improved professional and social support for families in need of palliative care, and
  5. Continued improvement of pediatric palliative care through research and education. [24]

Qualifying Patients
Patients who should receive palliative care include:

  1. newborns at the threshold of viability (<24 weeks or <500 grams),
  2. newborns with complex or multiple congenital anomalies incompatible with life,
  3. newborns not responding to Neonatal Intensive Care Unit (NICU) care interventions (either a slow deterioration or an acute life-threatening event), and
  4. newborns with a severe chronic illness which may become life-threatening[12, 15, 34, 35]

Domains of Palliative Care
In 2004, the National Consensus Project (NCP) published clinical practice guidelines for quality palliative care by outlining 8 domains of care. These guidelines were reaffirmed in 2009. The NCP is a QI project comprised of 9 total, but 4 coalition organizations, including the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, Hospice and Palliative Nurses Organization, and the National Hospice and Palliative Care Organization. The domains of care proposed include: 1) Structure and Processes of Care, 2) Physical Aspects of Care, 3) Psychological and Psychiatric Aspects of Care, 4) Social Aspects of Care, 5) Spiritual, Religious and Existential Aspects of Care, 6) Cultural Aspects of Care, 7) Care of the Imminently Dying Patient, and 8) Ethical and Legal Aspects of Care[36]. Further information may be found at and

Need for Education of the Texas Community Neonatal Healthcare Provider
Outreach into the surrounding community is paramount to the provision of palliative care[37]. In many cases, the diagnosis of a fetus or neonate with an ultimately terminal condition can be made antenatally, or immediately after birth. Some examples of such conditions include infants born at the limits of viability, or chromosomal anomalies and anatomic defects associated with poor outcomes despite intervention[3]. Irrespective of immediate high-risk obstetrical referral at a tertiary care center, adequate diagnosis, counseling, and family acceptance, health care providers in the community often remain uncomfortable caring for these affected families. Thus, many infants are transferred to a tertiary care center (away from their still hospitalized mother and family) to either receive palliative care and hospice referral, or to die. However, the familiar surroundings of the local community, accessibility, pleasant environment, and free parking often provide comfort to bereaved families[38]. Parents usually have better support systems, rapport with healthcare providers, spiritual/religious community, and funeral availability in their local area[15]. Thus, a death closer to home is often a more compassionate option.

The necessity of an interdisciplinary team to provide care at the end of life is well documented[9, 11, 12, 19, 20, 39]. The development of a successful statewide network of hospital-based palliative care teams has begun in Texas through the Texas Pediatric Palliative Care Consortium (TPPCC), and has already been implemented in California[19, 20, 40], Hawaii[41], Florida[42], Massachusetts[43],Minnesota[44] Montana[45], Wisconsin[46, 47], West Virginia[48], and the District of Columbia[49]. Besides aiding in the provision of end-of-life care, these statewide networks have reduced healthcare costs, and comply with JCAHO standard RI.1.2.8, “The hospital addresses care at the end of life”[48]. Although the TPPCC has raised awareness in the state, according to a 2008 study Texas still ranks among the lowest in the provision of palliative care programs in local community provider hospitals[50].

Barriers to Provision of Community Pediatric Palliative Care
Barriers to palliative care and weak links between tertiary care centers and the community still exist[51]. These barriers include limited education in palliative and end-of-life (EOL) care that child health professionals receive, which can negatively influence communication practices between the doctor and family, as well as among health professionals[52-54]. Traditionally, education concerning EOL care for children in the community has been abysmal[55]. In fact, a preponderance of evidence indicates that physicians are poorly prepared to care for dying infants and their families[56-59]. Although consensus guidelines for delivering bad news exist[60-62],many physicians report having no formal training in how to communicate effectively and compassionately in difficult circumstances/crisis situations[62-68], and do not feel prepared for these important tasks[52, 57, 63, 65, 67, 69]. Most recently, graduating neonatology fellows identified inadequacies in end-of-life training[70]. As a result, families have reported poor communication and sub-optimal pain management during the final months of patients’ lives[31, 52, 71-74].

Rationale for Toolkit Development
Although pediatric palliative care initiatives are quickly gaining momentum, there is currently no model for the “best practice” of neonatal palliative care in the literature[54].The establishment of such a model is vital to effective delivery of care to this vulnerable population[75-79]. Presented here is a possible project to develop a statewide EOL web-based “toolkit” containing educational models for the provision of palliative care to newborns in the following 8 domains as outlined as guidelines by the National Consensus Project (NCP) in 2004/2009. This toolkit may adapted for use in multiple settings, including both tertiary care centers and community hospitals, and may be used to appropriately identify and support qualifying neonates and their families through the dying process. The toolkit includes web-based didactics and guidance algorithms which have been proven effective in the medical literature, and in the future will support interactive video clips and self-assessment questions. In this manner, a formal structure to disseminate perinatal end-of-life care will be effectively initiated, and community physicians will benefit from easier access to hospice care and additional resources for their dying patients.

We expect the following concrete results with the implementation of this web-based toolkit: an increase in the delivery of infants with terminal conditions at Texas community hospitals, an increase in the comfort level of neonatologists and pediatricians with neonatal EOL care, an increase of available resources in community hospitals for palliative care and perinatal hospice, increased family satisfaction, and more efficient use of health care dollars by decreasing the length of stay and acuity of care in the NICU[17]. To this end, this project fits the mission of the TPS, as it will assist in the provision of education, access, innovation, and collaboration to physicians, families, and babies at the end of life. This web-based toolkit will hopefully eventually serve as an effective model for other community hospitals throughout the United States of America.

Toolkit Modules
The proposed modules are based on previously established principles and curricular guidelines on end-of-life care in the pediatric setting[6, 24, 80, 81]