Year: 2019
Type: letter
Abstract: We appreciate the letter from Kako et al regarding our examination of the relationship between advanced cancer patient–caregiver agreement regarding perceived prognosis and hospice enrollment within the last 30 days of life.1 In general, we agree with Kako et al and welcome this opportunity to expand our discussion of this important topic. Kako et al raised questions concerning how and when prognostic information should be provided that are critical to the translation of research into clinical care. A highly structured formulaic approach to prognostic discussions is unlikely to be effective when working with individual patients who vary with regard to disease status, emotional readiness for prognostic information, and caregiver support, among other factors. Our study highlighted the importance of an additional factor: caregiver prognostic understanding and agreement with the prognostic understanding of the patient.1 We believe that oncologists should elicit caregivers’ perspectives regarding prognosis, in addition to those of the patient. A simple question to caregivers such as, “what are your thoughts on this information” may be adequate for identifying gaps in caregiver prognostic understanding and discrepancies between patients and caregivers. Kako et al stated that rates of hospice enrollment in our study1 were similar in dyads who disagreed and dyads who agreed on a good prognosis. However, this was not the case. Consistent with our hypotheses, patients in dyads who disagreed on prognosis had significantly higher rates of hospice enrollment compared with patients in dyads who agreed on a good prognosis. Patients in dyads who agreed on a poor prognosis had the highest rates of hospice enrollment. As we stated in our study,1 this finding highlights the importance of assessing caregiver prognostic understanding, particularly when a seriously ill patient endorses a relatively good prognosis. Patients tend to be more optimistic than caregivers,2 but will be more likely to enter hospice if the caregiver has a realistic view of the situation. Although hospice enrollment has increased in recent decades, underuse of hospice (low enrollment rates, enrollment close to the time of death) has been well documented.3 Predictors of hospice enrollment are multifactorial and include patient demographics (eg, sex, race, and age), geography, and physician specialty.4 Our study1 added to this research by identifying caregiver prognostic understanding as a modifiable predictor of hospice enrollment. Oncology care teams could improve rates of timely hospice enrollment by assessing caregiver prognostic understanding and including caregivers in prognostic discussions, thereby improving end-of-life care. Kako et al pointed to a common dilemma in clinical care and research, which is the balance between providing information regarding a poor prognosis and maintaining optimism. We believe that this may be a false dichotomy that fails to recognize the complexity of cancer care and beliefs about the future. The problem is not with optimism, per se. Rather, the problem lies within the timing and the target of the optimism. Optimism regarding a cure may have initial benefits but becomes detrimental if not tragic as the patient’s health declines and decisions about end-of-life care are made. Combining support for hope with recognition that a cure is unlikely offers a person-centered, humanistic strategy that reflects the reality and uncertainty inherent in the treatment of patients with advanced cancer and their families. Viewing patients’ goals as fluid over time and working with them to “hope for the best while preparing for the worst” is one strategy for supporting patients while facilitating the provision of end-of-life care that is consistent with their preferences.5 Furthermore, helping patients and their families recognize that, through their own agency, they have some control over their psychosocial outcomes may support optimism, reduce feelings of helplessness, and improve end-of-life care. We agree wholeheartedly that more research in this area is strongly needed. Our study is a first step toward a better understanding of the role of caregivers in end-of-life care and the development of interventions to improve prognostic understanding and end-of-life outcomes in patients and their caregivers. The Values and Options in Cancer Care (VOICE) studies discussed herein were supported by grants R01CA168387 and R01CA140419. Ronald M. Epstein has received grants from the National Cancer Institute of the National Institutes of Health for work performed as part of the current study. The other authors made no disclosures.
Source: Cancer
DOI: 10.1002/cncr.32441
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W2964394564