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Listen :)

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"The World Health Organization defines palliative care as, 'an approach
that improves the quality of life of patients and their families facing the problems associated
with life-threatening illness, through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual'" (Michelson & Steinhorn, 2007, p. 2).

The current model of palliative care with children, has a focus of curative and supportive care (Michelson & Steinhorn, 2007, p. 2).

Comprehensive care requires input and work from an interdisciplinary team. Members of this team include: nurses, physicians, social workers, child life specialists, chaplains, pharmacists, physical therapists, and occupational therapists (Michelson & Steinhorn, 2007, p. 2).

Communication: Communication is key. This helps determine the patient's and family's needs. As a whole, the team can create goals and update the rest of the team members and family with progress or barriers encountered (Michelson & Steinhorn, 2007, p. 2).

Pain: A major component of palliative care involves relieving physical signs and symptoms of pain. "Achieving an acceptable quality of life cannot occur in the setting
of unrelieved pain, anxiety, nausea, constipation or other burdensome conditions. Thus
palliative care practitioners pay particular attention to identifying and treating aggravating
symptoms" (Michelson & Steinhorn, 2007, p. 3).

Pain: A lot of families are very concerned with giving a child a high dose of an opiate, out of fear of addiction or hastening death. However, multiple studies show that palliative care patients receiving appropriate doses of opiates for symptom relief management, do not have decreased survival (Michelson & Steinhorn, 2007, p. 4).

Psychosocial: For pediatric patients, this depends on their developmental stage as well as their extended relations to family and the community. With developmental stages, one has to remember how they best cope/how they understand death. In the infant stage, they want to be held and protected. In the pre-school years, they believe death is reversible and not permanent. In the school-age group, they understand mortality more and may need more support due to knowing what's coming. In the younger years, to help them feel fulfillment, parents may take them to places such as Disneyland. For older kids, it is about accomplishing something such as getting their driver's license.  Some helpful resources include support groups, counseling, and hospital services (Michelson & Steinhorn, 2007, p. 5).

Spiritual: "Studies show that spirituality and religion impact parents’ end-of-life decision making and help sustain them emotionally as they face the death of their child. But there is no single prescription to address spiritual needs. A patient’s spiritual needs are defined by their stage of development and their environment. A parent’s needs may be unique to their religion, their interpretation of religion, or their overall spiritual views. Conducting a spiritual assessment can help providers identify important spiritual issues and create opportunities to
discuss relevant concerns. Providing a safe environment for patients and families to explore their own sense of meaning or understanding of the situation can have lasting benefits" (Michelson & Steinhorn, 2007, p. 5-6).

Education for families: Families still need education on this topic. A lot do not understand what exactly "palliative care" is. They associate it with death and hospice. It is true palliative care is used during the end-of-life phase, but it also used to help prolong someone's life. Pediatric palliative care is family-oriented, whereas adult palliative care is patient-oriented the majority of the time. With the whole family being involved, the whole family needs to be clear on the definition and practice of palliative care (Michelson & Steinhorn, 2007, p. 7-8).

Education for nurses: Nurses are the biggest advocates for palliative care and have been pushing the topic for years. However, not all are educated about what it is exactly and what they can do to actively participate in it. Some nurses do not feel fully comfortable with all that it entails (Michelson & Steinhorn, 2007, p. 7-8).

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1. Nurses and other members of the healthcare team should receive more education on pediatric palliative care. This is especially true of those who work on units where this specifically applies. Examples of units where pediatric palliative care would be utilized are hematology/oncology, NICU, PICU, and emergency department units. Specifically, these nurses should earn proper credentials for pediatric palliative care. An example of a certification one can receive is, "Certified Hospice and Palliative Pediatric Nurse (CHPPN)". Gaining this certification would give them the proper education and information needed to give the best palliative care possible (Registered Nursing, n.d.).

2. Patients and their families should be educated on palliative care in the beginning stages of the child's chronic disease. Parents can be timid about asking questions or may have a wrong idea about this kind of care. There should be multiple printable resources to provide the family with information on what pediatric palliative care is, what it involves, resources, support groups, etc. The nurse should sit down and clear up any questions the patient/family has within their scope of practice.

3. There should be a general pediatric palliative care checklist that the nurse and other health care teams follow. This ensures that every step possible is taken and there isn't anything accidentally left out that could help the patient. This checklist would include education, the patient's and family's goals, medications, non-pharmacologic methods, what each part of the interdisciplinary team is responsible for, and home health care.

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We need more education on pediatric care, and it needs to be improved. Pediatric palliative care is a topic many are not familiar with nor comfortable with. It differs from adult palliative care. However, healthcare workers that take care of these kids, know that their needs are very different from the needs of adult patients. Unfortunately, pediatric palliative care is not consistently used with patients who need it due to lack of education and encouragement.

First, children have a number of different complex diseases that are not seen in the adult population. If the disease is in both the child and adult population though, it presents differently in children. While a pediatric patient has a disease, they are growing through it. This means their care must be tailored to them and constantly evolving (Center to Advance Palliative Care, 2017).

Second, in most cases, adults get to make their own decisions with their healthcare. Children however, are usually at the will of their parents and what they want to do (Center to Advance Palliative Care, 2017).

Thirdly, adults sometimes have the wrong idea about what pediatric palliative care involves. When they think of this concept, they may think, "death." It is not hospice, it is simply a way to treat the child's symptoms effectively so they can continue to experience an as close to normal life as they possibly can. It also helps to relieve them of some pain. It can be used while in hospice, but hospice does not have to be involved.

Overall, we need to make pediatric palliative care a more well known topic. Families and even healthcare workers need to better understand the process and how important it is to a child with a chronic illness. Some chronic illnesses include: Cancer, Sickle cell anemia, Chronic Kidney Disease, Diabetes, Scoliosis, Asthma, Epilepsy, AIDS, and Cystic fibrosis. The phrase, "pediatric palliative care" should not be avoided nor should it scare anyone. Some nurses just do not know how to fully utilize this form of care.

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Hi! My name is Drew Weitzman and for my Capstone Project I chose the topic, "Pediatric Palliative Care." Below is a photo of my first day of nursing school. It's crazy that was 2.5 years ago! My passion is pediatrics and I will be working at Children's Hospital of the King's Daughters on the Hematology/Oncology Unit (8b.) My choice in unit for after graduation, led me to choose this topic. My hope is to learn a lot from this project and be able to apply it to my job everyday.

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1. Initiating and Managing Change: This is a concept I have learned during my NUR 415 course and throughout the duration of my time at SCOHS. Change is essential for adaptation and growth. Also, it is continually evolving and never really stops. As new EBP is discovered, the medical world needs grows with it. Change is not always easy though. Some people are set in their ways and like the "old way." People could fight against it. However, nurses must be proactive and facilitate change. Creating change is especially important in pediatric palliative care because there will always be new and improved ways to help the patients and their families (Sullivan, 2013).

2. Delegation: From a nursing perspective, this is when the nurse transfers responsibility/authority for performing a task to another individual. When the other qualified employee (UAP for example) accepts the task, they are then responsible for completing that task. However, ultimately, the delegator is still held accountable. The delegator needs to later follow through and make sure the task is done. Delegation provides quality and safe care by a nurse. It allows for patient care to be enhanced, increases job satisfaction for the nurse, and retention is improved. Delegation helps to gain new skills, abilities, trust, support, confidence, and greater self-esteem. Delegation is crucial in pediatric palliative care because it takes a whole team to carry out this kind of care. One person cannot perform all of the necessary tasks. Each component of the interdisciplinary team has its own responsibilities and needs to communicate to others what they need to do to help the patient (Sullivan, 2013).

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The nurse's role in pediatric palliative care is very important. Most importantly, they are the patient's advocate and do their best to alleviate the child's and family's physical, emotional, social, and spiritual suffering. Nurses need to make sure the patient's and family's goals are consistently adhered to across all medical teams involved (Docherty, Thaxton, Allison, Barfield, & Tamburro, 2012). In addition, it is the nurse's role to treat pain and physical symptoms with pharmacological and non-pharmacological treatments. With non-pharmacological methods, nurses can play with the children, put on T.V. shows and movies, give them books to read, etc. A nurse's participation is vital in pediatric palliative care. The nurse is the one who is there assessing the child all day and speaking with the parents the most. They know what the child needs best, second to the parents. Nurses hear concerns and needs, but also see first hand what helps and what doesn't.