Palliative Care and Pain Management at the End of Life ___________________________________________
BARRIERS TO EFFECTIVE PALLIATIVE CARE FOR CHILDREN
Rarity of death among children Uncertain prognosis Unrealistic expectations or denial of parents Association of palliative care with “giving up” or hopelessness Immeasurable parental distress at loss of child Lack of pediatricians’ knowledge about distinction between palliative care and hospice Provider sense of failure when a child dies Lack of symptom assessment tools Lack of knowledge regarding pediatric dosing of symptom-relief medications Fragmentation of medical and psychosocial/spiritual services for children Lack of adequately trained pediatric hospice professionals Inadequate education for providers and families about palliative care Lack of adequate reimbursement Source: [14; 90; 476; 477]
Table 26
When parents and clinicians involve the child in discussions, the language used should be developmentally appropriate for the child and the clinician should check often to make sure the child understands. Having the child repeat the informa- tion in his or her own words is one way to assess comprehen- sion. When the child demonstrates an understanding of the illness and the prognosis, the emphasis should be on his or her preferences for care, and the child’s preferences should be given equal weight in the decision making [472; 487; 488]. The physician should be an advocate for the child’s preferences and decision [489]. Symptom management is a key issue in the pediatric setting. One study indicated that 89% of dying children suffered “a lot” or “a great deal” from at least one symptom in their last month of life, and other end-of-life symptoms have often been intractable [481; 490]. These problems are compounded by the fact that many clinicians who provide components of pediatric palliative care do not have confidence in their abil- ity to manage end-of-life symptoms [475]. Inadequate training and the paucity of data on symptoms in children/adolescents contribute to this lack of confidence. Few studies have been done to determine the prevalence of symptoms in children/ adolescents with life-limiting diseases, the studies that do exist are in the cancer setting, and evidence-based recommendations for interventions are not available. According to reports of parents, the most common symptoms during the last month of life are similar to those among adults; fatigue (weakness) and pain have been the most frequently reported ( Table 27 ) [481; 490; 491]. When evaluating fatigue in children, age is a consideration in how fatigue is discussed. Children think about fatigue as a physical sensation, and ado- lescents think about fatigue as either physical and/or mental tiredness [492]. Parents or other caregivers tend to report fatigue in terms of how it interferes with the child’s activities [492].
The American Association of Neuroscience Nurses recommends that nurses evaluate parents’ overall concerns related to their child’s end-of-life trajectory and address those concerns when planning care. Parents should be educated about symptoms that may be observed during their child’s end of life, especially signs of possible impending death. (https://bibliosjd.wordpress.com/wp-content/ uploads/2015/02/aann13_pbt_e.pdf. Last accessed October 14, 2024.) Level of Evidence : Level 3 (Recommendations are supported by qualitative study, case study or series, expert committee reports, and/or expert opinion) The involvement of the young patient in discussions about diagnosis, prognosis, and treatment goals is another important issue in the pediatric population. Members of the healthcare team should collaborate with parents to determine how much information should be shared with the child and how involved the child should be with decision making; these determina- tions should be based on the child’s intellectual and emotional maturity [14; 484]. Many parents wish to protect their child by withholding information, but studies have shown that children often recognize the seriousness of their illness and prefer open communication about their disease and prognosis [485; 486]. Such open exchange of information can help to avoid the fear of the unknown and preserve the child’s trust in his or her parents and/or family and caregivers [486]. Thus, as much as possible and appropriate, the child should be allowed to participate in discussions about the direction of care [484].
62
MDCA1525
Powered by FlippingBook