Beneficios de un programa de soporte para familiares de pacientes al final de la vida: estudio multicéntrico

EXTENDED RESUME BENEFITS OF A SUPPORT PROGRAM FOR FAMILY CAREGIVERS OF PATIENTS AT THE END OF LIFE: A MULTI-CENTER STUDY 1. INTRODUCTION The end-of-life situation involves a series of challenges that the patient and his family have to face, who must adapt to progressive losses that will culminate with the family member's death (Mitrani, 2006). In the situation of serious illness and end-of-life of one of its members, most families have a person who assumes the central responsibility of care, the "main family caregiver", defined as: "that family member who he takes care of the patient, most of the time, or for longer than other family caregivers "(Pérez-Marín, 2000). Family caregivers usually provide more than half of the care required by patients in advanced stages of illness (Abellán and Esparza, 2012). Numerous studies and interventions in families of the patient at the end of life, including the current strategy in Palliative Care of the National Health System, are focused on the figure of the main family caregiver, giving special importance to the system and family functioning (Aoun et al. al., 2015; Ventura et al., 2014; Spanish Ministry of Health, Social Policy and Equality, 2011). Assuming the main tasks of care can have a strong impact on the physical and psychological well-being of caregiver. This impact can influence negatively both the health of the patient and that of the family caregiver (McCorkle et al., 2007, Given et al., 2004, Harding and Higginson, 2003; Northouse et al., 2000). Most family caregivers are in a position to provide care and, at the same time, to need it; that is why they have been described as "the hidden patient" (Kristjanson and Aoun, 2004, Wilkinson and Lynn, 2005). In addition, improving the emotional state of these family caregivers and reducing their levels of overload is reflected in many cases in a reduction of the costs related to their health (Hall, Moriarty, Mittelman and Foldes, 2014). In the case of interventions to improve the emotional state of the patient's family caregiver at the end of life, the research supports their efficacy (Aoun et al., 2015, Jacobs et al., 2011, Docherty et al., 2008; Lorenz et al., 2008; Rabow, Hauser and Adams, 2004; Emanuel et al., 2000). Despite this evidence, their implementation in the practical hospital context is still, to this day, very limited (Badr et al., 2015; Docherty et al., 2008; Lorenz et al., 2008). The scientific literature emphasizes the need and importance of expanding research in this regard, conducting more studies that address the effectiveness of intervention programs in the patient's family caregiver at the end of life (Badr et al., 2015; Docherty et al. ., 2008; Lorenz et al., 2008). 2. OBJECTIVES AND HYPOTESES Main aim To analyze the impact that the application of a psychological intervention program has on the emotional state of family caregivers of patients at the end of life. In addition, it is also intended to analyze the impact that the participation of the family caregiver in this psychological intervention program may have on the emotional state of the patient. Specific objectives and hypotheses: The specific objectives that guide this study, as well as the specific hypotheses that derive from each of these objectives, are the following: Objective 1. To describe the sociodemographic and clinical characteristics of the participants. Objective 1.1. To describe the profile of the sociodemographic and clinical variables of the patients. Objective 1.2. To describe the profile of the sociodemographic variables of the main family caregivers. Objective 2. To describe the psychological characteristics of the participants. Objective 2.1. To describe the profile of the psychological variables (emotional well-being) of the patients. Objective 2.2. To describe the profile of the psychological variables (emotional well-being and burden) of the main family caregivers. Objective 3. To analyze the existing relationships between the variables studied in patients and family caregivers. Hypothesis 1. In patients, a higher level of cognitive impairment will be related to a lower level of functional independence. Hypothesis 2. In patients, a lower level of functional independence will be related to a higher level of emotional distress. Hypothesis 3. In patients as well as in family caregivers, a higher level of anxiety will be related to a higher level of depression. Hypothesis 4. In family caregivers, a higher level of burden will be related to a higher level of emotional distress. Hypothesis 5. A lower level of functional independence and a greater level of cognitive impairment in the patient will be related to higher levels of emotional distress and burden of the family caregiver. Hypothesis 6. A higher level of emotional distress of the patient will be related to a higher level of emotional distress in the family caregiver. Objective 4. To analyze the best predictors of the emotional state of the patient and the family caregiver. Hypothesis 7. The psychological variables of the patients will be predictors of the psychological variables of the family caregivers, and vice versa (emotional contagion). In this sense, the emotional state of the patient and the family caregiver will be related, and both emotional states (patient’s and family caregiver’s) will be predicted by the cognitive impairment and the functional independence of the patient and the burden of the family caregiver. Objective 5. To study the impact that the application of a psychological intervention program has on the emotional state of family caregivers, analyzing the role that the variables of age, gender and diagnosis may play. Hypothesis 8. There will be no significant differences between the experimental and control groups in any of the variables of study before the intervention (homogeneity of the groups). Hypothesis 9. Between the first moment of assessment and the second, all family caregivers will present a worsening in their emotional state indicators, due to the progress of the disease and the closeness of the patient's death. Hypothesis 10. In the second moment of assessment, the family caregivers of the experimental group (those who have participated in the psychological support program) will present better indicators of the emotional state than the family caregivers of the control group. Objective 6. To study the impact that the application of a psychological intervention program on family caregivers has on the emotional state of the patients, analyzing the role that the variables of age, gender and diagnosis may have. Hypothesis 11. There will be no significant differences between the experimental and the control groups in any of the variables of study before the intervention (homogeneity of the groups). Hypothesis 12. Between the first moment of assessment and the second, patients will present a worsening in their emotional state indicators, due to the progress of the disease and the proximity of their own death. Hypothesis 13. In the second moment of assessment, the patients of the family caregivers of the experimental group will present better indicators of the emotional state than those of the family caregivers of the control group. 3. METHODS 3.1 Participants Longitudinal data were collected from 213 patients at the end of life as well as from their respective 213 main family caregivers; therefore, the study analyzes 213 patient-caregiver dyads. All the patients were being treated in a Hospital Unit of Palliative Care at the time of the assessment. The inclusion criteria for patients were: - To be considered by the medical team as in end-of-life situation, following the criteria established by the Spanish Association of Palliative Care (SECPAL, 2018). - To have as main diagnosis any of the following pathologies: cancer, chronic obstructive pulmonary disease (COPD) or frail elderly, being the latter characterized by: advanced age with multiple chronic diseases and / or geriatric syndromes, with high risk of hospitalization, acute illness or death (Botella, Errando and Martínez, 1998). In cases in which the patient presented a diagnosis of cancer in addition to one of the other two diagnoses, cancer was considered as the main diagnosis. The inclusion criterion for family caregivers was: - To be the main family caregiver of a patient participating in the study. In the present study, the main family caregiver is defined as follows: family member who assumes the main tasks of care and attends to the patient most of the time, or for a longer period of time than other members of the family. The exclusion criteria for family caregivers was to present cognitive impairment. 3.2. Variables and assessment instruments Variables and assessment instruments are shown in Table 1. Table 1 Areas, variables and assessment instruments AREA VARIABLES INSTRUMENTS Sociodemographic variables Patient’s age Family caregiver’s age Patient’s gender Family caregiver’s gender Patient’s marital Family caregiver’s marital status Kinship Patient’s education Family caregiver’s education Family caregiver’s working status Ad-hoc register Main diagnosis Ad-hoc register Clinical variables Patient’s functional independence Functional Independence Scale (Mahoney y Barthel, 1965) Patient’s cognitive impairment Short Portable Mental State Questionnaire, SPMSQ (Pfeiffer, 1975) Psychological variables Patient’s emotional state Hospital Anxiety and Depression Scale, HADS (Zigmond & Snaith, 1983) Discomfort Observation Scale, DOS (Soto-Rubio et al., 2017) Family caregiver’s emotional state Hospital Anxiety and Depression Scale, HADS (Zigmond & Snaith, 1983) Family caregiver’s burden Zarit Burden Inventory (Zarit, 1981) 3.3 Procedure This study presents a quasi-experimental and longitudinal design, in which a descriptive, correlational, regression’s and comparative methodology was used. In the first place, the palliative care teams of reference hospitals in the Valencian Community (La Magdalena Hospital, Castellón; University Hospital of Valencia, and Dr. Moliner Hospital) were contacted to explain the objectives of the research to them, promote their collaboration and request their informed consent. Collaboration agreements were signed between the University of Valencia and the different collaborating centers. The assessment and intervention protocol was approved by the Ethics Committee of the University of Valencia (H1385291905651). The palliative care team of each hospital informed those patients considered by the medical staff in end-of-life stage and their families about the study. Each participant, patients as well as family caregivers, signed an informed consent and a confidentiality agreement, within the framework of the principles of the Declaration of Helsinki (WHO, 1975). In those cases when the patient presented cognitive impairment, the informed consent of their main family caregiver was obtained, so that a member of the health staff could complete the observational scales of the study (functional independence and discomfort) and collect medical data relevant to the study. As a longitudinal study, the research consists of three fundamental phases: 1) Pre-treatment assessment of the variables of study in both: patients and family caregivers; 2) Implementation of the intervention protocol with the family caregivers of the experimental group; and 3) Post-treatment assessment of the variables of study in both: patients and family caregivers. By agreeing to participate in the study, and once the informed consent was signed, each family caregiver was randomly assigned to one of the following two conditions: - Experimental group: the family caregivers of this group participated in the pre-treatment assessment, in the intervention program (attending at least to 5 from 8 treatment sessions), and in the post-treatment assessment. - Waitlist control group: the family caregivers of this group participated in the pre-treatment and post-treatment assessment, and then they were included in a waiting list to participate in the intervention program after both assessments were completed. In the control group as well as in the experimental group, the time between the initial assessment and the final assessment was 3 weeks. A member of the palliative care team completed the Functional Independence Scale and the Short Portable Mental State Questionnaire with the patients on each of the assessment moments. All pre-treatment questionnaires were completed during the second week of patient admission in the hospital. The assessment of the psychological variables and sociodemographic data was carried out by a trained psychologist member of the research team. The psychologist responsible for the assessment of a patient and their respective family caregiver (dyad) was the same who subsequently carried out the psychological intervention program with this family caregiver (if they belonged to the experimental group) as well as the dyad post-treatment assessment. Below, each of the three research phases is described in more detail: Pre-treatment assessment Initial assessment of patients: - Initial interview to collect sociodemographic data through ad-hoc register. - Application of the SPMSQ questionnaire: • If the patient obtained a score of less than 5 errors (less than 6 if he did not have primary studies), the HADS questionnaire was passed. We will refer to these patients, from now on, as patients without cognitive impairment. • If the patient obtained a score higher than 5 errors (6 if he did not have primary studies) the DOS scale was completed with the help of his main family caregiver. We will refer to these patients, from now on, as patients with cognitive impairment. - Completion of the Barthel Functionality Scale by the healthcare team. Initial assessment of the main family caregivers: - Interview to collect sociodemographic data through ad-hoc register. - Application of the HADS questionnaire. - Application of the Zarit questionnaire. Intervention protocol The intervention protocol is a structured program framed in the counselling approach, which addresses various issues that scientific literature has shown to be a key element in the emotional coping with end-of-life situations. The use of counselling approach on this field has been widely supported by previous research (Mittelman et al., 2014; 2007; 2006; 2004; Whitlatch, Judge, Zarit and Femia, 2006; Whitlatch, Feinberg and Tucke, 2005; Hepburn, Tornatore, Center and Ostwald, 2001). The design of the treatment was eight sessions of 90 minutes each, distributed over three weeks, trying to optimize with it the maximum time of intervention that could have therapeutic effects, considering the specific characteristics of the end-of-life situation. In line with this, we also find other intervention programs with a similar temporal design (Aoun et al., 2005, Hudson et al., 2008, Hudson et al., 2008, Barreto and Pérez-Marín, 2000). The intervention sessions were carried out individually with the family caregiver, providing a therapeutic environment for this important member of the family system. Authors such as Badr and colleagues (2015) refer in their studies the expressed need of family caregivers to have the possibility to express their thoughts and emotions without the presence of the patient (Badr et al., 2015). The intervention was made taking into account the particular needs of each family caregiver and the dyad he was a part of, which is in line with previous research in this area (Montgomery and Kwak, 2008, Lorenz and colleagues, 2008). The main therapeutic objectives of the intervention are based on data from previous research on the effectiveness of interventions in this area. These objectives are: - Identification of needs, fears, concerns and particular resources (Montgomery and Kwak, 2008). Training in identification, expression and regulation of emotions (Badr et al, 2015). Facilitation of emotional ventilation (Aoun et al., 2015). - Establishment of good channels of communication and cooperation, both among family members and between the family and health professionals, facilitating access to information about the disease process and its management (Aoun et al., 2015; Ventura, Burney, Brooker, Fletcher and Ricciardelli, 2014; Docherty et al., 2011). - Training and participation (together with the patient and the medical team) in tasks of care and decision making, and recognition of the priorities of the patient and the family caregiver (Aoun et al., 2015; Docherty et al., 2011; Hudson et al., 2008), fostering at the same time the sense of competence and autonomy of the family caregiver (Badr et al., 2015) and validating the importance of their caregiver role (Aoun et al., 2015). - Helping the family member to find meaning in the role of caregiver, within the framework of their own identity, and reducing the discrepancy between roles (Montgomery et al., 2011, Hudson et al., 2008, Savundranayagam and Montgomery, 2010, Gosselin, 1989). - Recognition of need of self-care and training in self-care techniques and care of personal relationships (Badr et al., 2015, Jacobs et al., 2011). - Preparation for the moment of death of the beloved one (Aoun et al., 2015). Throughout the intervention process, different topics are addressed that the scientific literature has shown to be key in the emotional coping of end-of-life situations. The intervention makes special emphasis in strengthening the communication skills of the family caregiver and providing tools to facilitate the communicative process with professionals and with the family system in general (Docherty et al., 2011). This makes special sense if one keeps in mind that in the Circumflex Model of Olson (2000) communication is considered a facilitating dimension of central importance to achieve changes in the other two dimensions of the family system: cohesion and flexibility. In order to achieve these objectives, counselling is the instrument of choice in the communication of the professional with the patient and their relatives, providing the basis for the management of emotional responses: It is the use of the principles of communication in order to develop self-knowledge, acceptance, emotional growth and personal resources, its overall goal is to help people live as fully and as satisfactorily as possible, and it can be involved in the resolution of specific problems, decision making, self-control, the process of dealing with crises, work through feelings or internal conflicts, or improving relationships with other people (Mittelman et al., 2014; 2007; 2006; 2004; Whitlatch, Judge, Zarit and Femia, 2006; Whitlatch, Feinberg and Tucke, 2005; Hepburn, Tornatore, Center and Ostwald, 2001). Within the counselling framework, the role of the professional is to facilitate the client's task, while respecting their values, their personal resources and their capacity for self-determination (Barreto, Arranz and Molero, 1997, Arranz, 1995, Schwaber, Kerson and Michelsen, 1995 and Corney and Jenkins, 1993). In short, it is about making a person reflect, through questions, so that they can make their own decisions. The intervention program presented is designed to be carried out with family caregivers of patients at the end of life with different diagnoses and levels of cognitive impairment, as it includes therapeutic elements that have proven effective in this regard (Aoun et al., 2015, Jacobs et al., 2011, Docherty et al., 2008, Lorenz et al., 2008, Rabow, Hauser and Adams, 2004, Emanuel et al., 2000). As previously mentioned, the intervention program consists in 8 sessions, of approximately 90 minutes each, distributed as follows: 1st session: initial assessment during the second week of the patient's admission. The target variables are those previously mentioned regarding the initial assessment. 2nd session: assessment of needs, fears, concerns and / or difficulties. 3rd session: fostering patient-family-professional communication. Detection and management of possible pacts of silence, perceptions regarding seriousness of illness that are not adjusted to reality, and communication difficulties related to health staff. 4th session: helping the family caregiver to support their beloved one, paying special attention to the emotions of anxiety, sadness, hostility, fear and denial. 5th session: Prevention of grief. Detection and management of risk factors against complicated grief, emphasizing the following areas: - Dependence towards the patient - Anger - Guilt - Psychopathological history - Previous unresolved grief - Delay in diagnosis of the patient - Control of symptoms - Economic problems 6th session: Prevention of grief. Detection and promotion of protective factors against complicated grief, focusing especially on the following areas: - Importance of the role of the caregiver - Self-care - Empowerment and positive emotions - Pleasant activities - Search for meaning 7th session: deepening in those aspects considered most appropriate according to the family's concerns, the needs detected and the patient's situation. 8th session: consolidation of the aspects worked to date and reinforcement of those elements that the family member and the professional consider most useful. Elaboration of a plan of action regarding the new difficulties that might emerge and how-where to request help. The order of the sessions was the same for most family caregivers, although in some cases it was adjusted if the professional considered it appropriate according to the family member's concerns or situation. The structure of each session was adapted to the concerns and needs of each family caregiver. All the contents were approached with each family caregiver. There may be certain variations in the time devoted to each of the aspects treated, as well as the particular strategies used, depending on the needs presented at the individual level. Post-treatment assessment 3 weeks after the initial assessment, a new test pass was made. This final assessment of the patients consisted of: - Application of the SPMSQ questionnaire: • If the patient obtained a score of less than 5 errors (less than 6 if he did not have primary studies), the HADS questionnaire was passed. • If the patient obtained a score higher than 5 errors (6 if he did not have primary studies) the DOS scale was completed with the help of his main family caregiver. - Completion of the Barthel Functionality Scale by the healthcare team. At the same time, the final assessment of the main family caregivers consisted of: - Application of the HADS questionnaire. - Application of the Zarit questionnaire. 3.4 Plan of analysis of data SPSS 24 and Mplus 7.0 programs were used to store and analyse the data. The following statistical procedures were used: Descriptive analysis: means and standard deviations in the quantitative variables, and frequency distributions and percentages in the nominal or categorical variables were calculated. Correlation analysis: the Pearson correlation coefficient was calculated to study the degree of linear relationship between two variables. Analysis of means comparison: T tests were performed for dependent samples (intra-subjects analysis) and independent samples (inter-group analysis). On the other hand, ANCOVA analyzes were carried out to compare means, controlling the effect of some variables. Effect size analysis: coefficients d of Cohen (typified difference) and Eta square (η2) (biserial-point correlation coefficient) were calculated. Structural Equation Model (SEM): This technique combines both multiple regression and factor analysis. It allows to evaluate the dependency interrelations, at the same time that it incorporates the measurement errors on the structural coefficients. In this work, two models of structural equation (with patients with cognitive impairment and with patients without cognitive impairment) are compared. For this, the following data analysis procedure was carried out: Zero-order correlations have been calculated in SPSS 24. Correlation comparisons were also calculated between the two samples. Several structural equation models have also been estimated and tested in Mplus 7.0 (Muthén & Muthén, 1998-2011). The structural model has been tested simultaneously in a multigroup routine in patients with and without significant cognitive impairment. The measurement invariance models are nested and their relative plausibility (fit) must be assessed. The plausibility of the structural models was assessed using: (a) the chi-square statistic (Kline, 2015); (b) the comparative fit index (CFI; Bentler, 1990) of more than .90 (and, ideally, greater than .95; Hu and Bentler 1999); (c) Akaike Information Criterion (AIC) to compare models, with lower values indicating better fit; and (d) the Root Mean Squared Error of Approximation (RMSEA) of .08 or less (and, ideally less, than .05) (Hu and Bentler 1999). Nested models, as the ones in the invariance routine, can be compared with two rationales (Little, 1997): the statistical and the modelling one. The statistical rationale compares the chi-squares of the alternative models, with non-significant values suggesting multi-group equivalence or invariance. However, this statistical approach has been usually combined with the comparison of fit indices (Cheung & Rensvold, 2002). This practical or modelling approach, advocated among others by Little (1997), states that if a parsimonious model (such as the ones that posit invariance) evinces adequate levels of practical fit, then the sets of equivalences are considered a reasonable approximation to the data. Practical fit is usually determined with CFI differences. CFI differences lower than .01 (Cheung & Rensvold, 2002) or 0.05 (Little, 1997) are usually employed as cut-off criteria. 4. DISCUSSION Limitations and future lines of research A possible initial limitation of this study was that the patient's emotional distress was measured with two different instruments, according to the cognitive state of the patients. However, both the comparison analysis of correlations and the comparison of the different models of structural equations provided data supporting the use of these two instruments in this context, since the relationships observed between the variables are the same. In this sense, this initial limitation that is considered convenient to continue exploring in future research, also provided one of the most relevant conclusions of the study. It would also be interesting to consider how the variables of this study are related to different types of caregiver burden. In this sense, a possible limitation of the study is that only the general measure of burden that assesses the Zarit Burden Inventory was used. Thus, it would be interesting to take into account separately the emotional and instrumental aspects of caregiver burden. However, the choice of using the general measure of the Zarit Burden Inventory is justified by the good psychometric properties of the scale and also because it encompasses both emotional and instrumental aspects related to feeling "overwhelmed" by the family care tasks when providing care in the end-of-life context. One of the contributions of this work that would require a more detailed study in future research is the data obtained regarding the depressive symptoms of the family caregiver. In this investigation, no significant differences were observed in the values of depression as an effect of the intervention, which draws attention and raises the question of whether this program would be mainly effective in the anxious and burden symptoms, requiring at the same time some adjustment in its design in order to optimize the therapeutic benefits regarding the depressive symptoms. Some studies emphasize the importance of taking into account not only the patient-family caregiver dyad, but the triad patient-family caregiver-health professional in the field of palliative care in order to better detect and meet the needs of patients and their family caregivers (Docherty at al., 2008). Thus, the incorporation into the intervention design of some specific work sessions with the reference systems (patient-family caregiver-health professional) is a future challenge for this type of therapeutic work. Finally, in developed countries, such as Spain, the social context in which health interventions are incorporated is increasingly multicultural. It would be interesting for future research to take into account the culture of origin of the specific dyad in which the intervention will occur. It is important to bear in mind that intervention programs aimed at reducing emotional distress and burden of the family caregivers in this context are more effective if they adapt to the specific needs of the patient-caregiver dyad. In the case of this research the participants did not differ greatly in terms of their culture of origin. However, it is a factor that should be considered, especially in contexts where cultural diversity is more accentuated than the one in which this research was carried out. 5. CONCLUSIONS The present study provides relevant information regarding the efficacy of an intervention program in family caregivers of the patient at the end of life with different diagnoses and different levels of cognitive impairment. The content and structure of this intervention program are based on scientific evidence collected through previous research, and the data supports its effectiveness in reducing the emotional discomfort of these family caregivers, specifically their level of anxiety, global emotional distress and burden. The size of the sample is considerable (213 dyads of the general group, 154 final sample), especially when taking into account that the final samples in this type of studies are usually reduced for various significant reasons characteristic of end-of-life context: the difficulties to access to this type of population (patients and their caregivers) in this type of context (separately and even more so together as a dyad), and the great experimental mortality of this type of research. The present study is not only longitudinal, it also includes the application of the intervention program (a minimum of 5 out of a total of 8 sessions) and measures the patient-caregiver family dyads, at two time points, before and after treatment. For all this reasons, it is considered that the sample size of the present study is large in comparison with other studies of this nature. Regarding the general objective of this research: "to analyze the impact that the application of a psychological intervention program has on the emotional state of family caregivers of patients at the end of life", the results indicate that family caregivers who participated in this program showed benefits that are reflected in lower levels of overall emotional distress, anxiety and overburdening of the caregiver, compared to those family caregivers who did not participate in the intervention program. The intervention program has shown, therefore, its effectiveness in reducing anxious symptoms, emotional distress and burden of main family caregivers of patients at the end of life. At the same time, in regard to the impact that the participation of the family caregiver in the afore mentioned psychological program may have had on the emotional state of the patient, data of the present study indicate a benefit in the patients of the family caregivers who participated in the intervention, reflected in lower levels of anxiety and overall emotional distress (including indicators of discomfort). However, the data on this benefit in patients are not as powerful as those observed in the benefits of family caregivers. Thus, it would be necessary to study in more detail how the benefits of this intervention program might be reflected not only in the emotional indicators of the caregiver but also in those of the patient. It has also been observed that the patient's situation at the end of life is an emotional challenge for them and their family, especially for their main family caregiver. In addition, elements such as loss of functional independence or cognitive deterioration in these patients are also related to the anxious-depressive symptoms that many of these patients and their relatives present. It is important to highlight the implications of the family caregiver’s burden in their emotional well-being and that of the patients. As mentioned above, caregiver’s burden stands out as a key element to be taken into account in interventions designed to reduce the emotional distress of family caregivers of patients at the end of life. In the case of the intervention that the present study proposes, there is a reduction observed in the burden level of the family caregivers that participated in it, which supports its effectiveness in reducing caregiver’s burden. The therapeutic elements contemplated in the intervention of this study are supported by previous research in this field and, once again, data supports their effectiveness in reducing the emotional discomfort of family caregivers of the patient at the end of life. An element that contributes to the usefulness of this study is the observation that some of the aspects that contribute the most to the emotional distress of patients as well as of family caregivers, are factors that can be reduced through psychological interventions, as it is the case of burden of the family caregiver. While it is true that the patient's clinical situation has a significant influence on their emotional well-being and that of their family caregiver, it is also true that the level of burden of the family caregiver is more related to their own emotional well-being and that of the patient, than other factors such as the level of functional independence of the patient. Aiming to reduce the burden of the family caregiver is always an option, whereas aiming to improve the functional independence of the patient might be more difficult in some cases. Having all these elements in mind will be useful when designing possible intervention plans aimed at increasing the well-being of patients at the end of life and their family caregivers.