Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study

Abstract

BackgroundThe 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.MethodsPurposive, 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.ResultsThe 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.ConclusionThe 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.Electronic supplementary materialThe online version of this article (10.1186/s12910-017-0231-8) contains supplementary material, which is available to authorized users.

End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

“…8,32,33 Other factors, including a patient's age, family/cultural ethnicity and preferences, discipline of health care provider, and type of treatment center, may also further influence AYA patients' overall experiences of end-of-life care. 8,[34][35][36] One qualitative study of Mexican oncologists highlighted that they preferred to broach end-of-life topics only once they had determined curative treatment options had been unsuccessful. 34 Although little research has explored this, the timing of these conversations may also vary between diagnosis groups; one article reported that end-of-life discussion for North American AYAs with leukemia/lymphoma was more likely to occur in the last seven days of life, compared to patients with either a solid tumor (89 days) or central nervous system/brain tumor diagnoses (37 days).…”

“…8,[34][35][36] One qualitative study of Mexican oncologists highlighted that they preferred to broach end-of-life topics only once they had determined curative treatment options had been unsuccessful. 34 Although little research has explored this, the timing of these conversations may also vary between diagnosis groups; one article reported that end-of-life discussion for North American AYAs with leukemia/lymphoma was more likely to occur in the last seven days of life, compared to patients with either a solid tumor (89 days) or central nervous system/brain tumor diagnoses (37 days). 8 This disparity may have been driven by differences in treatment options and corresponding prognostic uncertainty.…”

“…For example, evidence from multiple countries suggests that the majority of AYAs with cancer die in a hospital setting, 8,[38][39][40] despite suggestions by AYAs' families that they may prefer to die at home. 34,41 In a study of end-oflife preferences of American 15-39 year olds with cancer, Mack and colleagues found that most patients receive intensive life-prolonging measures regardless of their last stated preference. 38 This may stem from a medical team's overemphasis on curative treatment, 8 a lack of open, honest, and effective communication, or a lack of awareness of palliative treatment options (such as hospice care) in AYAs and their families.…”

“…For example, some literature points to familybased decision-making models in different cultures influencing whether the young patient is involved in conversations about their care. 34,47,48 For example, in several non-Western cultures there is less emphasis on individualism and autonomy for the adolescent; rather, family (primarily parents) might prefer to lead conversations and decision making about the young person's care, which may not always involve the young person themselves.…”

“…Finally, how best to approach and support end-of-life conversations with AYAs in the context of cultural and linguistic diversity is also an area where further guidance for clinicians would be helpful. 34,[47][48][49]…”