Decision making in palliative radiation therapy: reframing hope in caregivers and patients with brain metastases

Abstract

Given the importance of caregivers in the care of patients with brain metastases, fulfilling their unique informational needs appears to require more attention. The blurred boundary between hopes and expectations for WBRT creates unique challenges in joint treatment decision making for patients with brain metastases and their caregivers.

Physician Expectations of Treatment Outcomes for Patients With Brain Metastases Referred for Whole Brain Radiotherapy

“…It can be challenging to recommend supportive care alone to patients, especially when they come to the RRRP expecting WBRT. A qualitative study found the major factors influencing patients and caregivers in decision making for WBRT were hope, knowledge, expectations of radiotherapy, and current symptoms (21). Oncologists find it difficult to discuss treatment options at the end of life and have admitted to delivering treatment not likely to help to maintain patient hope (22).…”

Level and direction of hope in cancer patients: an exploratory longitudinal study

“…Patients may also know of family members or friends who have died of cancer after a similar treatment scheme as they are receiving themselves, and now, the patients hope for quality of life goals that they once saw as important for a loved one. Sze et al [24], in their study of brain tumour patients, found that patients' hopes fell into the categories cure, increased life expectancy, improved symptom control, and improved acceptance. As shown in Fig.…”

Informational Stories: A Complementary Strategy for Patients and Caregivers with Brain Metastases

“…Although the facts regarding an advanced cancer are difficult to accept, patients and caregivers still desire information 14,20 . However, the information needs of patients and caregivers vary.…”

“…Patients generally focus on current information needs; caregivers want more information about the future (for example, life expectancy and anticipated symptoms) 14 . The responsibility of health care providers and patient educators is to present the information in a sensitive manner that equips patients and caregivers alike with the necessary knowledge and that realigns hope against realistic expectations to facilitate successful coping with the diagnosis 14 . Traditionally, written patient information has been presented in pamphlets, booklets, and brochures that use a fact-based approach.…”

“…Theme identification using a grounded theory approach was applied to transcribed interviews from two qualitative studies (39 interviews with 20 caregivers and 19 patients) 14 designed to address the information needs of patients with brain metastases and of their caregivers. These key topics were identified: Four of the foregoing topics were selected for use in the present study: radiation therapy, treatment side effects, steroid tapering, and palliative care.…”