Pediatric Palliative Care Analysis Paper

Pediatric Palliative Care

Melissa A. Mahoney-Roche

Wilmington University

Abstract

Palliative care is presented at diagnosis of a chronic illness to assist in the relief of symptoms the patient will experience.  This does not always occur when it is a pediatric patient facing a chronic or life-limiting illness.  It is important that pediatric palliative care be introduced at diagnosis and continues throughout the course of the illness.  Education and policies need to be provided for all pediatric providers to ensure that palliative care is available to those who would like to take advantage of this opportunity.  The health care team should provide advocacy for the parents and patients during this difficult path.  Communication is key in a situation where palliative care is in place.  The goal when palliative care is in place is to improve the quality of life while dealing with the future path the illness may take.  Palliative care is in place to offer hope and control of symptoms of an illness whether a cure is possible or not.  Ensuring this is possible even for pediatric patients is vital for all involved.  

Pediatric Palliative Care

This paper will look at pediatric palliative care which may then evolve end of life care and look at the need for increased education among health care worker so that they are able to be an advocate for their young patients.  “Pediatric palliative care aims to improve quality of life and reduce suffering of children and their families in the physical, psychological, social and spiritual domains.” (Chong, 2015, p. 33). According to the World Health Organization health policy “refers to decisions, plans and actions that are undertaken to achieve specific health care goals within a society.  An explicit health care policy can achieve several things: it defines a vision for the future which in turn helps to establish targets and points of reference for the short and medium term.  It outlines priorities and the expected roles of different groups; and it builds consensus and informs people.” (WHO.int)  This paper will attempt to define the issue of pediatric palliative care and its importance in medicine today.  It will provide background and information related to the social, economical, ethical, political and legal factors surrounding pediatric palliative care, end of life care and the need for advocacy.  Policy goals and objectives will be addressed as well as cost, quality of care, protection of patient and provider autonomy and political feasibility.  Finally, pediatric palliative care process will take into consideration nursing implications when it is provided.  

Policy Process

According to the WHO, “the development of national health policies, strategies, and plans is a complex and dynamic process” (WHO.int).  The stage-sequential model includes four steps in the process: agenda setting, policy formation, program implementation and policy evaluation.  This process will be utilized in this paper to organize the topic of pediatric palliative care.  Each of these stages contains a set of actions and activities that produce outcomes or products that influence the next stage (Berkowitz, 2010, p. 52).  There are several steps included in the policy process that build on the four primary stages previously mentioned.  These include definition of the problem of pediatric palliative care as well as how to get it on the agenda by getting the attention of the policymakers.  Researching the problem is important so that solutions can be created and recommended.  Policy options need to be developed and this step relies on evidence and opinion.  Stakeholders and interest groups are involved to generate discussion and debate during the policy process to allow all sides to be considered.  Implementation on the selected policy will be dependent on the type of policy, be it federal legislation or an organizational policy.  Evaluation of the impact of the policy is important to determine whether or not the policy worked as intended and resolved the problem.  At this stage there will also be evaluation of whether or not there were unintended circumstances that arose.  Modifying, repealing or leaving the policy alone is important to consider as the policy was put in place to solve a problem and if this is not happening there may be need for modification or repealing of the policy.  The communication of policy options can be done in different ways, through a short policy issue or decision brief or an issue analysis paper (Berkowitz, 2012, p. 54).

Definition of the Problem

        The first step in preparing a policy is defining the issue that needs to be improved upon or corrected.  Pediatric palliative care was first recognized by the American Board of Medical Specialties in 2006 which is not that long ago.  The board defines “hospice and palliative medicine as the field of medical expertise that seeks to improve the quality of life and reduce various forms of distress for patients and their families in the face of serious life-threatening or inevitably life shortening conditions or when end-of-life care or bereavement services are needed” (AAP, 2013).   Pediatrics in palliative care is still a new area and not discussed as often.  “Historically, palliative care has not been associated with pediatrics” (Jankowski, 2014, p. 30).  With the advances in medicine in the past 50 years the need for pediatric palliative care has grown dramatically.  According to the Children’s International Project on Palliative/Hospice services, there are an estimated 8600 U.S. children eligible for palliative care each day (Wu, 2014, p. 80).  It is important that pediatric patients are afforded palliative care at point of diagnosis and throughout the course of illness both inpatient and at home.  Properly trained healthcare individuals can also serve as advocates if the parents are unable or unwilling to be part of the decision-making process.  

        It is important to recognize that children are not young adults and while the main focus of palliative care is similar there are many issues that differentiate care for them (Chong, 2017, p. 33).  The life-limiting illnesses that children have are often nonmalignant and uncommon in adults, and prognosis is often less certain (Chong, 2017, p. 33).  It is important to begin palliative care at the time of diagnosis and it be offered to families both in hospital and at home.  Home-based palliative care has been shown to improve patient’s quality of life and provide psychological and emotional benefits to carers (Chong, 2017, p.33).  

Research

        In the state of Delaware there were 296 children between the age of 1 to 19 who died during the years 2009 to 2013, or 0.8% of the total deaths during that time (www.delaware.gov).  According to the CDC website, there were over 42,000 children who died in the year 2014 in the U.S., with just over 23,000 being under the age of one year (cdc.gov).  Pediatric palliative care has made great strides over the past two decades yet there is still much room for growth and improvement.  One study shows that while 69% of the hospitals participating in the study had a pediatric palliative care program in place it only offered inpatient services and most only during the work week (Feudtner, 2013, p. 1063).