+ Resolve Article
+ Follow Us
Follow on FacebookFollow on Facebook
Follow on TwitterFollow on Twitter

+ Translate
+ Subscribe to Site Feed
GeoScience Most Shared ContentMost Shared Content

Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents' experiences

, : Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents' experiences. Journal of Child Health Care 14(1): 52-66

Much of the work in children's hospitals is rightly focused on treatments aimed towards cure but this means that death is often seen as a failure and, as such, it may not be discussed or acknowledged as a possibility until very late in a child's stay in hospital. However, this reluctance can deny the child and their family the opportunity to be informed, prepare and make choices. A survey of the care received by parents whose child had died in a children's tertiary treatment centre led to a greater understanding of the parents' experiences and the ways in which care could be enhanced. Parents talked of the way in which the geography of the hospital could be disruptive and dislocating and yet they often had no place to be alone or in private. Communication was identified as a core issue with many parents being positive about the quality and timing of communication. However, other parents expressed a preference for more preparation about the possibility that their child might die. Some parents had positive experiences of follow-up visits after their child's death, whilst others remained frustrated and some felt this visit had made them re-live the experiences. The importance of kind, supportive and consistent care was clearly evidenced by the parents when they spoke about their feelings and emotions. The findings helped to develop and implement an End of Life Care Pathway and a pathway tool which aimed to enhance parents' experiences and to improve care. A further survey was triggered by the concern that the pathway was not being fully utilized and it became apparent that, despite the tool, staff were still reluctant to provide anticipatory guidance, even though many practical aspects of care scored well. The need for good communication that prepares parents for the eventuality that their child might or will die is one of the clearest lessons from the second survey. This is important as anticipatory guidance opens up parents - and children's - choices, and their opportunities to be involved and make decisions. More work needs to be undertaken in relation to continuing education of clinical staff, raising awareness of the resources available and empowering families by providing information.


PMID: 20207658

DOI: 10.1177/1367493509347060

Other references

Heistad, D.D.; Wheeler, R.C., 1970: Effect of acute hypoxia on vascular responsiveness in man part 1 responsiveness to lower body negative pressure and ice on the fore head part 2 responses to norepinephrine and angiotensin part 3 effect of hypoxia and hypocapnia. Journal of Clinical Investigation 49(6): 1252-1265

Kaur, I.Pal.; Singh, H., 2015: Nanostructured drug delivery for better management of tuberculosis. With almost 30% of the world population suffering from tuberculosis (TB) including its resurgence in the developed world, better management of this global threat is highly desired. The emergence of multidrug-resistant TB (MDR-TB) against first-lin...

Daszak, P.; Ball, S.J.; Streicker, D.G.; Snow, K.R., 2011: A new species of Eimeria (Apicomplexa: Eimeriidae) from the western hognose snake, Heterodon nasicus (Serpentes: Xenodontidae), from Texas. A new species of coccidian (Apicomplexa: Eimeriidae) is described from the feces of a western hognose snake Heterodon nasicus (Serpentes: Xenodontidae) collected from Texas, and housed in the collection of the Zoological Society of London. Oocysts...

Arafat, W.O.; Gómez-Navarro, J.; Xiang, J.; Barnes, M.N.; Mahasreshti, P.; Alvarez, R.D.; Siegal, G.P.; Badib, A.O.; Buchsbaum, D.; Curiel, D.T.; Stackhouse, M.A., 2000: An adenovirus encoding proapoptotic Bax induces apoptosis and enhances the radiation effect in human ovarian cancer. Overexpression of proapoptotic Bax favors death in cells resistant to ionizing radiation. We hypothesized that expression of Bax via adenoviral-mediated gene delivery could sensitize radiation-refractory cells to radiotherapy. An inducible Bax rec...

Lau, Y.Y.; Ma, P.; Gibiansky, L.; Komorowski, R.; Wang, J.; Wang, G.; Yan, H.; Véniant, M.M.; Kakkar, T., 2010: Pharmacokinetic and pharmacodynamic modeling of a monoclonal antibody antagonist of glucagon receptor in male ob/ob mice. Elevated basal concentrations of glucagon and reduced postprandial glucagon suppression are partly responsible for the increased hepatic glucose production seen in type 2 diabetic patients. Recently, it was demonstrated that an antagonistic human...

Glen William, 1989: Meteorites, volcanoes and dinosaurs; update on a historical project on the current debates. Newsletter - Center for History of Physics, American Institute of Physics 21(2): 2-3

Heldman, Dr, 2004: Identifying food science & technology research needs. Food technology 58(12): 32-34

Rodriguez, P.H.; Tamayo, M.R.; Castillon, R.; Nasr-Schirf, D., 1999: Variation in acid hydrolase enzyme titers in different developmental stages of Aedes togoi. Genetic mechanisms of filarial nematode susceptibility were studied in Aedes togoi. Acid hydrolases may play an important role in this process, including humoral or cell-mediated defenses. Levels of acid phosphatase, alpha-glucosidase, beta-glucur...

Rosenthal, M.S.; Lannon, C.M.; Stuart, J.M.; Brown, L.; Miller, W.C.; Margolis, P.A., 2005: A randomized trial of practice-based education to improve delivery systems for anticipatory guidance. Background: Communication between physicians and patients is an important component of medical encounters and has been identified by the institute of Medicine as a point of intervention to increase quality of care. In pediatric health maintenance...

Tralau Hans, 1968: Evolutionary trends in the genus Ginkgo. Three main independent phylogenetic groups within Ginkgoales, consisting of different families, are suggested. It is considered impossible to deduce the genus Ginkgo from any other genus by means of fossil evidence known at present. The oldest fin...