Would they do it again? Final treatment decisions in malignant brain tumour patients—a caregiver’s perspective

Abstract

Purpose Overall survival of malignant brain tumour patients has significantly been increased over the last years. However, therapy remains palliative, and side effects should be balanced. Once terminal phase is entered, both patients and caregivers may find it hard to accept, and further therapies are demanded. But little is known about this highly sensitive period. Therefore, we analysed the last therapy decisions from the family caregiver’s perspective. Would they support their beloved ones in the same way or would they now recommend a different therapy decision? Methods Caregivers of deceased malignant brain tumour patients, treated at our neurooncological centre between 2011 and 2017, were included. We designed a questionnaire to analyse the impact of the last therapy decision (resection, chemotherapy, radiotherapy), focusing on probable repeat of the choice taken and general therapy satisfaction. Independent variables, for example “satisfaction with therapy”, were analysed using linear regression analysis, the coefficient of determination R2 and the standardized regression coefficient β. The binary logistic regression analyses were taken to illustrate relationships with the dichotomously scaled outcome parameter “re-choice of therapy”. Odds ratio analyses were used to determine the strength of a relationship between two characteristics. Results Data from 102 caregivers (life partners (70.6%)) were analysed retrospectively. Each 40% of patients died in a hospice or at home (20% in a hospital). In 67.6% the last therapy was chemotherapy followed by radiotherapy (16.7%) and surgery (15.7%). A positive evaluation of the last therapy was significantly correlated to re-choosing of respective therapy (chemo-/radiotherapy: p = 0.000) and satisfaction with informed consent (p = 0.000). Satisfaction regarding interpersonal contact was significantly correlated to satisfaction with resection (p = 0.000) and chemotherapy (p = 0.000 27 caregivers (28.7%) felt overburdened with this situation). Conclusion This analysis demonstrates a significant correlation between a positive relation of patient/caregiver/physician and the subjective perception of the latest therapy. It underlines the central role of caregivers, who should be involved in therapy discussions. Neurooncologists should be specially trained in communication and psycho-oncology.

Education for the informal caregiver of cancer patients in the dying phase

“…En cuidados de soporte se contempla la posibilidad de la hidratación y alimentación tanto enteral como parenteral, pero en la situación de agonía pueden constituir una futilidad grave, por lo que estas medidas estarían contraindicadas, y las excepciones se deberían justificar tanto científica como moralmente. (22) El cuidador presentar puede expresar sus inquietudes asociadas con los siguientes aspectos: "Tiene sed porque está con la boca seca", "La deshidratación produce agitación, dolor y sufrimiento", "Si se pierde peso es porque el paciente pasa hambre", Si el paciente no come nunca se pondrá mejor, "Si no se le ponen sueros se puede morir de sed", "No administrar sueros ni alimentos es ilegal". (24,25,26) Hemos de considerar que cuando el paciente se adentra en el estado agónico, uno de los signos que presenta es su desinterés por la ingesta, presentándose incluso la pérdida de la vía oral para la medicación.…”

“…En cuanto a la importancia del conocimiento para el manejo farmacológico mediante los estudios de Rapp et al (22) , Green at al., se fundamenta la necesidad de debe evaluar e informar sobre el uso de todos los fármacos que se utilizan para controlar síntomas específicos. El uso de polifarmacia puede reducir o exacerbar la eficacia de algunos medicamentos prescritos.…”

Social relationships and relational pain in brain tumor patients and their partners

“…The quality of communication between healthcare providers and patients and their families may be influential in their adaptation to diagnosis, treatment, and even loss. Given the high mortality associated with many forms of brain tumors, it is notable that after the death of the patient, a positive relationship with healthcare providers prior to death leaves caregivers with a positive perception of the last therapies employed ( 33 ). This suggests that compassionate communication between providers and families can ease the psychosocial pain associated with the diagnosis and treatment of these cancers, even in the face of the loss of their loved one.…”