Quantity of Life or Quality of Life? The Dilemma for Families of Pediatric Oncological Patients in the Terminal Stage

Abstract

The issue of dignified death is still a controversial issue, in particular, the decision to continue or not medical treatment as well as the time when it should be suspended. In addition, the analysis of the legal, emotional, psychological and spiritual implications for both the patient and the family and medical staff involved in this issue.
Pediatric patients’ death confronts many issues. Medical science interprets this death as a failure, because in training institutions, human resources in health are educated to preserve and prolong life. For parents it means an irreparable loss, as they do not expect their child to die before them because it breaks the natural cycle of life.
In some states of Mexico it has been legislated in favor of the directive. However, only patients who meet the requirements of age and judgment in their mental faculties can apply for the exercise of this right through the protocol and documents established. In the case of a minor patient, decision makers are parents or guardians. However, both the family and the medical team that treats reticent regarding cessation of treatment is, they question if they have exhausted all possible treatment options and even denying the obvious physical and emotional deterioration of the patient and their impending death. These reasons favor exerted on the child a set of actions defined as a therapeutic obstinacy, which are intended to prolong his life, but at the expense of a critical deterioration in the quality of it. This causes the child a painful agony that leads him to be himself who requests the cessation of efforts to keep him alive through petitions that may be evident and frank at times and in other almost unnoticed, but obvious to those who listens to them.
To reduce or eliminate practices of therapeutic obstinacy, it is necessary to favor in health institutions and among health staff with a thanatological culture, as they are the ones who accompany the patient and his family in communicating the diagnosis and through the evolution of the disease. This culture should be inculcated from training institutions of human resources for care and health care, as the thanatological education allows the patient, family and health care team, the making of relevant and timely decisions, which enables the acceptance of the diagnosis, the development of coping strategies necessary for the evolution of the disease, as well as the certainty and value for the final decision: letting go.