Pediatric Palliative Care Analysis Paper

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With all of the improvements made in pediatric palliative care there are still barriers in place that cause difficulty in providing appropriate care of ill and dying children in the United States. The most common barriers cited for providing pediatric palliative care include uncertain prognosis, families not being ready to acknowledge that a condition may be incurable, language barriers and time constraints (Wu, 2013, p. 80). There also is mention of differences between clinicians and patient/parent understanding of prognosis and lack of parent readiness to have the discussion (Durall, 2012).

The goal of pediatric palliative care is to address the needs of infants, children, adolescents and young adults facing life-threatening or life-limiting illnesses. It aims to relieve suffering, improve quality of life, facilitate informed decision-making and assist in care coordination between clinicians and across sites of care (AAP, 2013). Providing relief from suffering across multiple realms, including the physical, psychological, social, practical and existential or spiritual, improve the child’s quality and enjoyment of life while helping families adapt and function during the illness and through bereavement, facilitate informed decision-making by parents, families and health care professionals, and assists with on-going coordination of care among and across various sites of care (AAP, 2013).

While providing pediatric palliative care it is important to remember the goal is to improve quality of life for both the child and the family (www.getpalliativecare.org, 2017). Pediatric palliative care addresses many different major and serious medical conditions. These can include cancer, genetic disorders, prematurity, neurological disorders, heart and lung conditions as well as others (www.getpalliativecare.org, 2017). Pediatric palliative care does not cure the illness but does provide additional support that is appropriate at any age, stage of the illness and can be provided in addition to treatments meant to cure the illness or diagnosis. The goal is to ease symptoms of the illness which can include: pain and discomfort, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping to name a few (www.getpalliativecare.org, 2017).

The American Academy of Pediatrics continues to advocate for the development, adoption, and adherence to clinical policies and guidelines that promote the welfare of children living with life-threatening conditions and their families, with goals including provision of accessible, equitable, and effective support for cure-directed, life-prolonging, and palliative care (AAP, 2013).

Stakeholders

In order to get a policy in place it is important to involve interest groups and stakeholders. Stakeholders are those parties who have influence over the issue, are directly involved by it, or could be mobilized to care about it (Mason, 2016, p. 82). The child’s care team would be the stakeholders involved in pediatric palliative care. The team would include their doctors, advanced practice nurses, nurse coordinator/caseworker, social worker, chaplain, child life specialists, therapist, nurse, dieticians, the child and their family (www.getpalliativecare.org, 2017). Others that may play a role in the pediatric palliative care team could be pharmacists and volunteers along with psychologists and ancillary therapists such as art and music as well as rehabilitation therapists.

The members of a palliative care team will have the opportunity to get to know both the child and their family members. Specialists in the field of illness or disease will be the primary doctor handling the coordination of care for the patient. The doctor will be the leader of the palliative care team due to their expertise in the disease process and ability to assist members of the team with understanding of the medical aspect of the condition (www.getpalliativecare.org, 2017). The advanced practice nurse’s role is to help manage symptoms and care for the entire family. They will guide the family through the hospitalization and care at home. An important role of the nurse coordinator or caseworker is to navigate the services that may be needed at home. This person usually has experience working with nursing agencies and therapy providers that will offer services in the home of the child. Helping other health care providers work together to provide the best possible care for the child is also a role the nurse coordinator would perform (www.getpalliativecare.org, 2017).

The social worker has the job to help the children and their families cope with the illness and subsequent symptoms. This could include assisting with access to mental health services for the patient and family members as well as assistance with financial difficulties when required (www.getpalliativecare.org, 2017). The chaplain of the team is there to ensure the family’s religious beliefs are honored. Child life specialists use different ways to assist the child with understanding the illness, such as play, art, music or writing. They are also helpful with the child’s siblings coming to an understanding of their brother or sister’s illness and course it may take. At times the child life specialist becomes the closest person and main source of support. The other supporting roles of psychologist and therapist offer outlets for both patient and family members to assist with understanding and dealing with the illness and the potential outcome.

Background

The section of the paper will address the social, economic, ethical, political and legal factors that encompass the education, advocacy and care planning involved in pediatric palliative care.

Social Factors

When dealing with children and families facing life-threatening or life-limiting illnesses there appears to be similar personality characteristics and communication skills. It is important to be respectful, kind and understanding when dealing with the patient and family members that are receiving palliative care. It is important to facilitate clear, compassionate and forthright discussions about medical issues (AAP, 2013). Often the line between life and death is fine and straddling this line can be difficult. It requires strong communication skills by the palliative care team members. Communication needs to meet two of the basic needs of human development when dealing with pediatric palliative care patients and families. These needs are cognitive needs and affective needs. Cognitive needs involve how a person acquires, processes and uses knowledge. It is the patient and family’s need to know and understand their diagnosis along with the treatment

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