Emotional Distress of Patients at End-of-Life and Their Caregivers: Interrelation and Predictors

Abstract

Background: Patients at the end of life and their families experience a strong emotional impact. The well-being of these patients and that of their family caregiver are related.Aim: To study the variables related with the emotional well-being of patients with and without cognitive impairment at the end of life and that of their primary family caregivers.Design: Cross- sectional study.Participants: Data was collected from 202 patients at the end of life with different diagnosis (COPD, cancer, and frail elderly) as well as from their respective 202 primary family caregivers.Results: Structural equation models indicated that the emotional state of the patients was best predicted by their functional independence and the burden of their family caregivers. In addition, the emotional state of the primary family caregiver was predicted by their burden and not by the cognitive state or the functional independence of the patient. Nevertheless, the burden of the family caregiver, which is the only variable predicting both the emotional state of the patient and that of the caregiver, was directly related with the functional independence of the patient and indirectly with the patient’s cognitive state.Conclusion: The family caregiver’s burden is an important factor to take into consideration when aiming to reduce the emotional distress of patients at the end of life with different diagnosis -whether or not they present significant cognitive impairment- and that of their family caregivers.

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

“…Based on the linear regression analysis, both the family caregiver's emotional distress and his/her burden predict the distress of the patient, in conjunction with the patient's functional independence and the time living with the disease. The interrelation between the family caregiver's emotional distress and the emotional distress of the end-of-life patient as a dyad goes in line with previous literature [ 22 , 23 ]. In this study, this interrelation can be observed via the regression analysis as well as with the QCA analysis, and it highlights once more the importance of attending to the emotional needs of patients and their families in the palliative settings, considering the patient and their main family caregiver as a system.…”

“…Several pathways predict the variance observed in the emotional distress of family caregivers of end-of-life patients with COPD. Based on the linear regression analysis and the QCA, the medical variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity and functional dependence play an essential role in the emotional distress of the family, as does the emotional distress of the patient [ 22 , 23 ]. The relevance of family caregiver burden is fundamental in preventing their emotional distress, so future studies focused on designing intervention programs in this regard should consider the importance of including elements to reduce the caregiver burden [ 13 , 17 , 19 , 22 ].…”

“…Based on the linear regression analysis and the QCA, the medical variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity and functional dependence play an essential role in the emotional distress of the family, as does the emotional distress of the patient [22,23]. The relevance of family caregiver burden is fundamental in preventing their emotional distress, so future studies focused on designing intervention programs in this regard should consider the importance of including elements to reduce the caregiver burden [13,17,19,22]. Therefore, central elements in emotional distress in palliative COPD patients and their families are the caregiver's burden and the patient's functional independence, taking into account that time since diagnosis, number of admissions, and comorbidity also play a role.…”

“…The patient’s emotional state is another factor that research has shown to be closely linked to the family caregiver’s emotional state [ 22 , 23 ].…”

Dankschreiben an Palliativteams

“…Erst als weiterer Schwerpunkt werden von den Angehörigen die eigenen emotionalen Bedürfnisse angegeben [25], deren Ausgangspunkte Erschöpfung, Schuldgefühle, Ärger, Traurigkeit, Ängste, Einsamkeit, Hilflosigkeit oder Ungewissheit darstellen [20] und die verstärkt in der Sterbephase und nach dem Tod des Patienten auftreten [21]. Pflegende Angehörige wollen zudem vom Palliativteam in ihrer Rolle als Hilfegebende gesehen und wertgeschätzt [27] und nach ihren Gefühlen und ihrem Befinden gefragt werden [17].…”