RESUMO
The arts can aid the exploration of individual and collective illness narratives, with empowering effects on both patients and caregivers. The artist, partly acting as conduit, can translate and re-present illness experiences into artwork. But how are these translated experiences received by the viewer-and specifically, how does an audience respond to an art installation themed around paediatric heart transplantation and congenital heart disease? The installation, created by British artist Sofie Layton and titled Making the Invisible Visible, was presented at an arts-and-health event. The piece comprised three-dimensional printed medical models of hearts with different congenital defects displayed under bell jars on a stainless steel table reminiscent of the surgical theatre, surrounded by hospital screens. The installation included a soundscape, where the voice of a mother recounting the journey of her son going through heart transplantation was interwoven with the voice of the artist reading medical terminology. A two-part survey was administered to capture viewers' expectations and their response to the piece. Participants (n=125) expected to acquire new knowledge around heart disease, get a glimpse of patients' experiences and be surprised by the work, while after viewing the piece they mostly felt empathy, surprise, emotion and, for some, a degree of anxiety. Viewers found the installation more effective in communicating the experience of heart transplantation than in depicting the complexity of cardiovascular anatomy (p<0.001, z=7.56). Finally, analysis of open-ended feedback highlighted the intimacy of the installation and the privilege viewers felt in sharing a story, particularly in relation to the soundscape, where the connection to the narrative in the piece was reportedly strengthened by the use of sound. In conclusion, an immersive installation including accurate medical details and real stories narrated by patients can lead to an empathic response and an appreciation of the value of illness narratives.
Assuntos
Cardiopatias Congênitas , Transplante de Coração/educação , Ilustração Médica , Modelos Anatômicos , HumanosRESUMO
OBJECTIVE: The objective of the current study is to describe correlations between age, gender, and primary cancer site and sustained-release opioid doses prescribed for hospice patients at the end of life. PATIENTS AND SETTING: This study included all 7,201 hospice patients referred to a North American palliative care specialty pharmacy with the primary diagnosis of cancer and who were prescribed transdermal fentanyl, sustained-release oral morphine, or sustained-release oxycodone. DESIGN: This is a retrospective analysis of the final sustained-release morphine, oxycodone, or transdermal fentanyl doses prescribed to cancer patients, according to pharmacy records. Comparisons between sex and age group were performed with chi-square tests. Mann-Whitney U tests were used to compare mean doses between the sexes. Analyses of covariance (ANCOVA) were used to compare opioid doses between genders and among primary cancer sites while controlling for age. RESULTS: The inverse association between age group and dose was highly significant. For example, final opioid doses =120 mg/day oral morphine equivalent were prescribed for only 46.4% of patients between 40 and 49 years of age compared with 86.4% of patients 90 years of age and older. An ANCOVA on the largest non-sex-related diagnoses found primary tumor site and patient age, but not gender, to be associated with sustained-release opioid dose. CONCLUSIONS: Both primary tumor site and patient age were associated with final opioid dose. Further investigation is warranted to determine which primary tumor sites are associated with unusually high opioid doses and may highlight the need to optimize adjuvant medication therapy if neuropathic and/or inflammatory pain mechanisms are involved and to refer to pain specialists when appropriate.