Decision-Making in the Era of New Medical Technologies in Pediatric Hematology-Oncology: The Death of Palliative Care?

BACKGROUND: Recent advances in immunology, genomics, and cellular therapy have opened numerous therapeutic possibilities in pediatric hematology-oncology, generating new hope in poor prognosis situations. How decisions are made when it comes to treatments and aims needs to be explored in this new technologic context. In particular, their impact on the gold standard of early referral to palliative care must be assessed. MATERIALS AND METHODS: Stemming from an ethnographic study combining semistructured interviews and observations carried out in a hematopoietic stem cell transplant unit in a Montréal Pediatric Hospital, we discuss the decision-making process when a patient faces poor prognosis. RESULTS AND DISCUSSION: Although health care providers individually envisioned that palliative care may be the best course of action for patients receiving emergent therapy, they remained collectively in the curative mode. The intricate relationship between science, hope, caregiver, and care receiver sustains this perspective even when (near) death is the probable outcome. When proven treatment fails, emerging therapeutic possibilities offer new hope that can delay the referral to the palliative care team.

Knowledge and practices of youth awareness on death and dying in school settings: a systematic scoping review protocol.

BACKGROUND: Awareness-raising and education have been identified as strategies to counter the taboo surrounding death and dying. As the favoured venue for youth education, schools have an essential role to play in informing future decision-makers. However, school workers are not comfortable addressing the subjects of death and dying, which, unlike other social issues, have no guidelines to influence awareness of these subjects in youth. OBJECTIVES: To systematically explore the knowledge and practices on raising awareness about death and dying in schools, the viewpoints of the people involved (young people, school workers; parents), and the factors that either promote or hinder awareness practices. METHOD: The scoping review method of Levac and Colquhoun (Implement Sci 5(1):69, 2010) will be used. Using a combination of keywords and descriptors, a body of literature will be identified through 15 databases and through grey literature searches, manual searches, consultation of key collaborators, and the list of relevant literature. Publications since 2009 will be selected if they relate directly to awareness-raising about death and dying in schools. Writings will be selected and extracted by two independent people, and conflicts resolved by consensus. The extracted data will be synthesized using a thematic analysis method. Experts from a variety of disciplines (health sciences, humanities, social sciences, and education) will be consulted to enhance the interpretation of the preliminary results. Results will be presented in narrative form and will include tables and diagrams. CONCLUSION: The results of this scoping review will contribute to the development of educational practices adapted to young people and to the identification of future avenues of research on awareness of death and dying.

Decision-making and Poor Prognosis: When Death is Silenced by Action.

In the hospital milieu, daily questions relate to highly invested areas such as quality of life and death issues, choices to continue or stop active treatment, and the legitimacy of those who take part in such decisions. Stemming from an ethnographic study carried out in a hematology-oncology transplant unit in a Montreal pediatric hospital, we discuss the decision-making process (or lack thereof) when a patient faces poor prognosis and the change of trajectory from a curative/disease directed to a palliative perspective. The intricate relationship between science, caregiver, and care receiver sustains action even when (near) death is the probable outcome.