Parents’ acceptance and regret about end of life care for children who died due to malignancy

Abstract

Purpose To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. Method This was an observational qualitative study. Parents of incurable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. Result Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of incurability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). Conclusion Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.

Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care

“…Pain is one of the most common symptoms at the end of life, experienced by 56% of patients in our study. This number is also consistent with other literature, where pain was reported from 45 to 80% [ 3 , 7 , 8 , 9 ]. In our sample, 55% of patients suffered from dyspnea in the terminal phase; this number varies between 30–80% in the corresponding literature [ 3 , 7 , 8 ].…”

“…This number is also consistent with other literature, where pain was reported from 45 to 80% [ 3 , 7 , 8 , 9 ]. In our sample, 55% of patients suffered from dyspnea in the terminal phase; this number varies between 30–80% in the corresponding literature [ 3 , 7 , 8 ]. Vomiting is reported at a frequency of 23–63% [ 3 , 7 , 9 ]; in our study, 32.5% suffered from nausea/vomiting at the end of life.…”

“…Outpatient palliative care not only makes it possible for these children to die at home, but families more often perceive death as peaceful [ 20 ]. In addition, it is important to mention that parents whose children died in a hospital seem to regret this decision more frequently [ 8 , 9 ]. It should be noted, however, that these aspects reflect the experience in our palliative outpatient care and may not be generalized in different settings.…”

Câncer infantil e impactos emocionais para a família: Uma revisão da literatura

“…Vivenciar uma doença grave, como o câncer infantil, desperta uma cascata de emoções, especialmente as negativas (Hildenbrand et al, 2011;Fortier et al, 2013;Popp et al, 2015;Cox, 2016;D'urso et al, 2016;Buchbinder et al, 2017;Doumit & Khoury, 2017;Moreira-Dias & Silva, 2018;Kostak et al, 2019;Das et al, 2019;Peterson et al, 2019;Rensen et al, 2019a;Rensen et al, 2019b;Schoors et al, 2019;Hooghe et al, 2020;Lazar & Musek, 2020.). Entre essas se destacaram, principalmente, o medo como o mais relevante (38%; n=14), seguido de irritabilidade (24%; n=9), ansiedade, incerteza e tristeza (esses três últimos apresentaram igual porcentagem, 19%; n=7).…”

Caregiver Distress in Cancer

“…In an Indian study, the researcher asked about the most bothersome symptoms reported by parents of dying children. Pain (85%) and respiratory distress (73%) were the commonest [5]. Much of the fear is due to past experiences of uncontrolled symptoms.…”