Good death term in the aspect of paediatric palliative care nursing
good death; nursing; pediatric palliative care
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life-limiting illness can greatly alter family functioning and overall well-being. The importance of addressing a child and their family members' physical, emotional, cultural, spiritual, and psychosocial needs has been well documented in pediatric palliative care. Discussion(s): Death is one of the main threats for a human being. It is usually seen as an adult or geriatric populations' problem, so the idea of "children and babies may die, too" is mostly avoided or prohibited from talking by societies, families, health-care professionals, etc. And all of these children and families suffer from during end of life or/and bereavement process. To stop these nurses and other health-care professionals are important to deliver care in the aspect of good death. Good death or die with dignity for child and their families contain 'free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural and ethical standards in terminal illnesses'. In other words, freedom from distressing symptoms, dying in a favorite place, good relationships with family members and medical staff, a feeling that the dying person's life is complete, maintained dignity, preparation for death were also other parts of a good death. To ensure good end for pediatric palliative care, nurses should take advanced nursing practices and responsibilities, but this is not simple because this aspect of nursing is not given by education, neither undergraduate nor post-graduate education. Nursing education at the undergraduate level is mainly based on the medical model. Therefore, while students are receiving detailed information about the protection, prevention, treatment, and rehabilitation of diseases, and they have a limited education on the end of life. As a result, the student nurses and nurses do not want to care for the individual who has a terminal illness, do not feel ready for them, feel a sense of inadequacy, and the care of the patient and his/her family is negatively affected. So education should be planned end of life care, a good death, and palliative care to stop possible negative effects.
Ozkan S; Tas Arslan F
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
Discussing end-of-life issues in an adolescent with a terminal illness
adolescent; advance care planning; end-of-life; terminal illness
Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an awareness of self and others, gaining selfconfidence, independence, and establishing one's own identity are halted. The difficulty lies in balancing the desire to gain independence while experiencing greater dependence on others as their disease progress. Purpose(s): This review discusses the multi-faceted barriers in discussion of end-of-life care with the adolescent and strategies to optimize this discussions. Case description: This case is about a wheelchair-bound 14-year-old boy with Duchenne's Muscular Dystrophy (DMD), and challenges faced discussing end-of-life issues. His condition was complicated by restrictive lung disease requiring nocturnal Bilevel Positive Airway Pressure (BiPAP) and dilated cardiomyopathy with severely reduced biventricular systolic function. His parents did not want the patient's deteriorating condition to be divulged to him, and he struggled to make sense of his medical experiences. This resulted in non-compliance to medication, fluid restriction, and nocturnal use of BIPAP, exacerbating a vicious circle of admissions for fluid overload due to symptomatic congestive cardiac failure. He had difficulty coming to terms with his illness, felt like a burden to his parents, struggled with frequent nightmares about death, and would wake up in a state of panic. Advanced Care Planning (ACP) with the family was challenging due to parental resistance. Results/Discussion: We reviewed the literature and identified challenges in discussing end-of-life issues with the adolescent. Perspectives from main stakeholders such as the parents, the adolescent, and the medical professionals were evaluated. Key strategies for taking on the end-of-life discussion with the adolescent are as follows: (1) Employing a multidisciplinary team approach for supporting decision-making by dying adolescent, including the physician, nurse, psychologist, social worker, and child life specialist; (2) overcoming parental barriers through physician truthtelling and effective communication, and breaking-down of parental self-defense mechanisms through psychosocial support and pediatric palliative care teams; (3) engaging the adolescent and determining their functional competence and decision-making ability; and (4) integrating truthtelling with modern bioethical principles. Conclusion(s): Our clinical case exemplifies the importance of involving the adolescent in the end-oflife discussion. Early involvement establishes trust between the medical team and the family, whilst providing control and independence as the adolescent's needs are incorporated into the treatment plan. As physicians, the aim is to engage the above strategies together with the multidisciplinary team, preserve opportunities for the adolescent and family to create meaningful legacies, say goodbye to each other, or find spiritual peace in end-of-life care.
Chia S Y
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>