Children with cancer, parents, and clinicians, face difficult decisions when cure is no longer possible. Little is known about decision-making processes, how agreement is reached, or perspectives of different actors. Professionals voice concerns about managing parental expectations and beliefs, which can be contrary to their own and may change over time. We conducted the first systematic review to determine what constitutes best medico-legal practice for children under 19 years as context to exploring the perspectives of actors who make judgements and decisions when cancer treatment is no longer curative.

The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice.

Background: Menstruation poses particular challenges for women with intellectual disability (ID). In low-and middle-income countries, where these women do not have access to facilities and resources for adequate menstrual care, hysterectomy could be considered as an ethically acceptable procedure. We conducted the first systematic review to identify what constitutes best practice for menstrual hygiene in women with ID and explored the perspectives of actors involved in the hysterectomy decision. Methods: Theory-informed mixed-method thematic systematic review with theory development. Results: Eleven ethical guidelines and 17 studies were included. Respect for autonomy and the patient's best interest were the criteria to determine what constitutes best practice. The actors' values and attitudes expressed some dimensions of existing inequities. In low-and middle-income countries, the main concern of parents was the difficulty to train their daughters about menstrual hygiene. Parents (mothers in particular) also expressed the feeling of being excessively burdened, and complained about the limitations of their support networks. Doctors perceived hysterectomy as a safe procedure and a solution for women with ID, whose menstrual hygiene is problematic. In general, the more severe or profound the level of ID, the more likely the interested parties advocated for a hysterectomy. The women with ID perceived their menstruation as a negative experience. Hence, the three parties supported hysterectomy for menstrual hygiene. Parents and doctors considered informed consent or assent (from the women with ID) as necessary and achievable. Conclusion: The international ethical guidelines suggest that non-therapeutic hysterectomy in women with ID should not and ought not to be recommended as routine and appropriate method to cope with menstrual hygiene even if it is technically safe. Although hysterectomy to cope with menstrual hygiene is still a live issue in high-, middle-, and low-income countries, in high income countries it is performed with authorization from the Court; whilst in low-and middle-income countries there is not an active involvement of the State, or financial or training support for women with ID and their carers. Hence, in low-and middle-income countries there is an urgent need to develop and enact policies and statutes in this area of public health and clinical practice.

Background: Non-therapeutic hysterectomy has been performed to this day in Mexican women with intellectual disabilities (IDs), but the rationale for performing the procedure has been rarely submitted to clinical ethics committees. The objectives of the present research were to determine the frequency of hysterectomy and the clinical and epidemiologic characteristics that associated to the indication of hysterectomy in girls and young females with IDs and to analyse the emerging ethical issues related to the procedure.Materials and Methods: A medical chart review was conducted to identify female patients aged ≤ 25 years who had IDs based on anatomical pathologies and hospital records and underwent hysterectomy between January 2014 and December 2019 in nine high-concentration hospitals in Mexico City. Data were collected using a questionnaire developed ex professo and validated through a pilot study and analysed using the Statistical Package for the Social Sciences (SPSS) 21.0 software.Results: Information of 234 female patients with or without ID who were ≤ 25 years of age was reported by the departments of anatomical pathology and paediatrics. Of the patients, 184 (79%) were excluded because the information reported was found to be erroneous or incomplete during the medical records review. Most of the 50 emales included in the study had moderate ID (n = 23, 46%) followed by those with severe ID (n = 17, 34%). The mean age at hysterectomy was 15 ± 2.9 years. Prophylactic-total abdominal hysterectomy was the most frequently performed (n = 42, 84%). A concurrence was observed between the parental and medical reasons justifying hysterectomy. The most frequent reasons were fertility control (parents vs. physicians: 46 vs. 42%), management of menstrual hygiene (28 vs. 30%) and risk of sexual abuse (6 vs. 6%).Conclusion: This study showed that performing non-therapeutic hysterectomy is subject to the clinical judgement of physicians according to their perception of the patient's quality of life. Therefore, the ethical quality of the decision to perform the procedure in girls and young females resides in the ethical value of its consequences.