Pediatric Palliative Care

The life of a child, requiring pediatric palliative care or living with chronic illness, deserves continuous holistic quality care. No child should endure suffering from lack of care or ineffective management of pain and symptoms. The advanced practice nurse can provide optimal care and meet those needs. It is time for change. This paper addresses pediatric palliative care and the advanced practice nurse role. Included is the significance, complexity, barriers, drivers for change, and solutions to solving the unmet needs in pediatric palliative care.

“The main goal of pediatric end-of-life care is to enhance a child's quality of life during his or her final journey” (Carroll et al, p. 819). Advanced practice nurses’ are the fundamental

answer to providing pediatric palliative primary care and meeting the unmet needs of this vulnerable population. “Palliative care is an emerging nursing specialty and is developing a dedicated spot in the field of pediatrics” (Crozier, p. 198). Pediatric palliative care is a journey of compassion, understanding, communication, trust, with respect to a family’s beliefs and values. Advanced practice nurses have the capability and empathy to meet the needs of a pediatric palliative care patient. Providing comprehensive, compassionate, ethical, and developmentally appropriate care with proper management critical to ensure holistic quality care. Improving pediatric palliative care and the advance practice nurses role is critical for the care pediatric palliative patients deserve.
The WHO defines pediatric palliative care as; “Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family” (2014). Integrating pediatric palliative care from time of diagnosis provides consistent quality care and enables a child to remain at home. According to Carroll et al, the “practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life” (p. 813).
The lack of knowledge, complexity of care and the need for education is evident in reviewed literature.

“Confusion about the meaning of palliative care and the ways it differs persists” (O’Shea, p. 35). Research and education is an essential contribution to the evidence base of pediatric palliative care, the advanced practice nurse role, and supports optimal care. “While palliative care for children has been the subject of increasing interest and research, much work still needs to be done to improve care of children with advanced illness and their families” (Mack, p.14).

It is vital for the advanced practice nurses to develop, document, educate, and implement quality care for the pediatric palliative patient and family, as “many parents need education and support in what is best, a role that is usually filled by health care professionals” (Whitty-Rogers, p. 744). Pediatric palliative patients and parents are active participants in care deserving of respect. “Respecting beliefs, customs, and traditions with a focus on preserving the integrity and sanctity of the parent-child relationship is of utmost importance in pediatric palliative care” (Weiner, p.

67).
Despite unmet needs in pediatric palliative care and the undeniable significance of the advanced practice nurse role, barriers persist in care. Significant changes are necessary to promote transparency as well as quality of pediatric palliative care and the advanced practice nurses role. “The care associated with terminal illness demands, more than ever, the qualities and skills that arise from compassion, reciprocity, professional commitment and the ability to communicate with patients and their families” (Barnard et al, p.6). Communication is a vital component in caring for the pediatric palliative care patient and supporting the advanced practice nurses role.
“Palliative care was first introduced in 1990 by the World Health Organization” (Morgan, p.86). Lack of knowledge, communication, restrictions, policies, and regulations are ongoing today. Concerns and barriers prevent the fundamental positive changes necessary for optimal care of the pediatric palliative care patient and family. ”The goals of care should always focus on the family’s needs and desires, removing the barriers that hinder the journey, and optimizing quality of life and relief of suffering along the way.” (Carroll et al, p.825).
Barriers from outdated regulations, laws, and restrictions prevent advanced practice nurses from practicing to the full scope of practice, providing primary care, and responding to the unmet needs of the pediatric palliative care patients. According to Naylor, “substantial barriers prevent nurse practitioners from practicing to their fullest capabilities” (p. 898). The advanced practice nurse and pediatric palliative care lack funding for evidence based research, knowledge, education and support. Reimbursement issue barriers continue despite the noted significance of the advanced practice nurse role. In the home care setting receiving early integration of pediatric palliative care is critical for optimal care. However, barriers delay care.
Advanced practice nurses are prevented from certifying and ordering home palliative care, an unnecessary barrier that delays continuity of skilled quality care. According to a policy brief by AACN, a vast range of stakeholders supports the Home Health Care Planning Improvement Act of 2013. This legislation would allow APRN’s (Advanced Practice Registered Nurse) to “order home health services under Medicare in accordance with state law” (2014). Although recognition of the advance practice nurse in healthcare is enduring, a glitch in Medicare law has prevented advanced practice nurses from certifying and ordering home health care. This barrier creates unnecessary stress on pediatric palliative care patients, leads to delays in care and increases health care costs. According to O’Shea, “families should not feel burdened by fragmented care, inconsistent plans of care, or ineffective communications from their health care team” (2013, p. 42). Addressing and removing these barriers is crucial for positive change.
Stakeholders are influential and significant for change in pediatric palliative care and the advanced practice nurses’ role. The pediatric patient, family, advanced practice nurses, community, health care professionals, insurers, policymakers at local, state and federal levels, organizations, researchers and educators; each have a unique perspective on pediatric palliative care, as well as the advanced practice nurses role. Involving each stakeholder from the beginning of proposed change is necessary to understand and promote pediatric palliative care with the critical need of the advanced practice nurse. Collaboration and communication is essential with those that share the same goal and message to promote change. Advanced practice nurses have a fundamental role in changing the health care system by documenting care and working together with stakeholders for solutions.
There are numerous drivers for change. The unmet needs of the pediatric palliative care patients and the advanced practice nurse role are significant reasons for change. Pediatric palliative care patients with end-of-life care, chronic illness, and special health care needs are living longer. As medical technology advances, increasing access to quality of care while controlling health care costs continues. Changes in health care have relocated increased pediatric palliative care towards the home setting. Technology and the ability to care efficiently in the home care setting will lower health care costs due to decreased hospital required care. Advance practice nurses are active in home care setting with expert clinical knowledge and the ability to manage care transitions effectively.
The current primary care provider shortage and projected increase in need presents a driver for change. Barriers to the advanced practice nurse meeting the needs in the primary care role persist. Even with an advanced practice nurse solution to this unmet need, a physician’s supervision remains a requirement in the advanced practice nurse role. Advanced practice nurse reimbursement fees based on state Medicaid regulations are notably different from other health care providers and in need of change. The Affordable Care Act of 2010, a driver for change, by decreasing health care cost while improving access to quality care providing children curative and hospice care. The Consensus Model for APRN Regulation presents changes that when implemented completely promotes and recognizes the advanced practice nurse role.
The lack of pediatric palliative care knowledge, the advanced practice nurses’ role and cost concerns are evident. Funding for research and education needs to be promoted and increased. Education on pediatric palliative care and the advanced practice nurses role is of the utmost importance for change. Change to existing legislation focused on quality pediatric palliative care and the advanced practice nurse role are critical for change.
The concerns of pediatric palliative care and the advanced practice nurse are not confined to the United States. “Standards for pediatric palliative care are now becoming a worldwide priority” (Rushton, p.59). Advanced practice nurses provide the most predominant health care and have the ability to affect global change. Globally there are efforts to improve pediatric palliative care through education of nurses and members of interdisciplinary teams. “The need for palliative care is growing, however nurses cannot provide care if they have not been educated” (Malloy, p. 412). An article by Malloy et al, addresses the efforts of the End-of-Life Nursing Education Consortium Project of education globally, “with the goal of providing excellent, compassionate palliative care, irrespective of location, financial status, political views, religion, race, and/or ethnicity” (2014, p. 417).
Inter-professional collaboration in pediatric palliative care is necessary as patients have a wide range of complex medical issues. However, restrictions prevent the advanced practice nurse from efficiently meeting unmet needs. Advanced practice nurses understanding of the drivers for change, concerns and barriers, will improve the delivery of care by promoting research, education, leadership and evidence-based quality of care. According to Stanley, “when fully implemented the Consensus Model will allow APRNs to practice to the full scope of their education and more easily move from one state to another, increasing access to quality health care services for all populations. Uniform titling and credentialing will enhance APRN recognition by the public, policy makers, and other health professionals” (p. 244)
Active involvement and increasing awareness by advanced practice nurses at the state and national levels to promote issues can make a difference pediatric palliative care and the advanced practice nurses role.

The advanced practice nurse is well positioned to be a leader and catalyst for change. “There is a huge opportunity for nurses to step up, provide leadership and make clear nursing’s unique set of contributions to people who need palliative care” (RWJF, 2010). Working with state boards of nursing and nursing organizations to develop plans and advocate for legislative change. The advanced practice nurse ability to practice to the full scope of practice and training requires the removal of restrictions and barriers.

Advanced practice nurses deliver knowledgeable, competent holistic quality care that is cost efficient. Through increased funding, research studies, and analyzing data, the advanced practice nurses can provide relevant information to promote policy changes. Advanced practice nurses can transform the healthcare system, blending their strength in collaboration with interdisciplinary teams. Providing compassionate, quality holistic care with expert management through all stages of illness, for a child with chronic illness or receiving end of life palliative

care.
Change is constant and adapting is essential. One must take the steps to begin the process of positive change. It is a critical time for role definition and recognition of the advanced practice nurse capabilities. The advanced practice nurse can make a significant difference in the life of a child and family. Meeting the unmet needs with respect and consistent holistic quality care. Incorporating cultural values, beliefs, peace and dignity to patients requiring palliative or chronic illness care.
The significance and necessity of the advanced practice nurse providing quality care for the pediatric palliative patient and family is undeniably evident. Despite noted barriers, becoming an advanced practice nurse with an independent practice remains unwavering. “PNP’s have, and will continue to have, an important role in pediatric primary and subspecialty care” (Freed, p. 849). Advanced practice nurses lead by positive example, communicating, listening, building relationships and trust with empathy for the pediatric palliative care patient. A child will not lack care or effective management of pain and symptoms during stages of illness. Advanced practice nurses are the answer to unmet needs and to achieve successful change.