Background
Family caregivers (FC), e.g. partners, relatives and friends who care for the patient, are a key resource for the well-being of terminally ill patients, but also by their assistance and active involvement in treatment decisions and care planning [
1]. In the trajectory of an incurable, progressive disease, patients and their FC are confronted with many difficult decisions influencing further care planning and quality of life, such as decisions about life-prolonging treatment, medically assisted nutrition and hydration, transitions in care (e.g. seeking emergency care), or the place of care and death [
2‐
6]. In palliative and end-of-life care, many of these decisions necessitate difficult conversations, need to be taken ad hoc, are irreversible, and are of existential meaning for the patient and his or her family. Since FC are usually most acquainted with the patient’s values and cater most about his or her best interests [
2], they often participate in medical decision-making processes [
2,
7,
8]. Prior studies demonstrat that many patients prefer family involvement in decisions [
9] and that FC voice their wish to be involved, too [
10]. Between 49 and 84% of cancer patients and 54 and 59% of FC prefer to involve FC in the decision-making process [
8]. While recognizing potential problems such as FCs’ dominant behavior, oncologists also appreciate family involvement in decision-making [
11,
12].
However, studies suggest that at least one-third of FC face emotional pressure and decisional burden associated with doubt and regret months or even years afterwards, which could lead to depression and stronger grief [
8,
13]. High caregiver burden has been reported specifically in case of substitute decision-making responsibilities, uncertainty about the patient’s wishes and values, and conflicting wishes regarding the place of death [
13‐
15]. In the context of palliative and end-of-life care, FC may encounter manifold morally distressing problems or ethical dilemmas. These, among others, include withholding/withdrawing of treatment, nutrition and hydration, resuscitation orders, palliative sedation, and truthful communication [
16,
17].
Stress due to ethical dilemmas has often been referred to as “moral distress”, which was first described by Jameton [
18] and has become an increasingly prevalent topic of discussion in healthcare [
19]. It describes the burden of a person when dealing with ethical dilemmas because he or she could not act according to their own values due to internal or external constraints [
18,
20]. Moral distress has been found to lead to feelings of depression, helplessness, exhaustion, frustration, guilt, and self-accusation [
21,
22]. Moral distress can either linger after the causal event, or can even grow with time, which has been called moral residue [
22]. Despite its original use for experiences of healthcare providers [
18], lately, some authors have argued that the concept of moral distress should be broadened [
23]. It can be assumed that morally troubling situations and dilemmas may lead to moral distress among FC of terminally ill patients. However, specific prerequisites of the caregiver role, such as direct personal involvement (vs. professional near-distance structure in healthcare providers) and a lower background of knowledge and experience (vs. professional routine in healthcare providers) may influence the nature of moral distress.
Knowledge about how ethical challenges occuring from morally troubling situations among FC could help to identify strategies on how to prevent and reduce related burden and eventually moral distress. However, research has mainly examined the perspective of patients themselves, healthcare providers and ethicists on ethical conflicts and dilemmas in the care of cancer patients [
24]. Ethical challenges that FC of advanced cancer patients may experience across the patient’s disease trajectory have been rarely investigated. Thus, this study aimed to gain insights into paths connected to ethical challenges by exploring morally troubling situations as well as related burden, strategies to handle the situation, and the experience of moral distress from the grieving FC’s perspective.
Discussion
This qualitative study delves into paths connected to ethical challenges among FC during the advanced cancer trajectory and how FC could be supported to prevent or reduce the related emotional burden or moral distress. We found two paths arising from different morally troubling situations and manifesting themselves differently depending on various factors. Yet, paths appear to coincide when it comes to their impact on FC moral distress and moral residue.
We found distinct types of morally troubling situations that either triggered a difficult decision-making process (
Path 1) or lacking decision-making options (
Path 2) from the FC perspective. Regarding
Path 1, FC described situations characterized by uncertainty regarding the patient’s preferences or diverging patients’ and FCs’ needs. The impact of such challenges is consistent with studies demonstrating decisional burden of FC in cases of uncertainty about patient’s wishes and conflicting needs, e.g. regarding the place of care and death [
13,
15]. For example, a study on FC who made a surrogate decision about the place of end-of-life care showed that FC reported significantly more burden when the decision was not concordant with the patient’s wishes [
15]. Another type of morally troubling situations was dilemmas arsing from conflicts between caregiving and other commitments like family or work. Consistent with our finding, challenges related to competing roles of FC have been eludicated in the discussion about ethical dimensions of filial caregiving [
39]. With respect to
Path 2, FC described situations which confronted them harshly with the finality of the patient’s life or sudden deterioration of his or her health status. FC felt powerless and overrun, since no decisions or options regarding cancer treatment or life-prolonging treatment were left. Additionally, FC experienced that patients chose to not involve FC in decision-making, e.g. treatment choices. Altogether, morally troubling situations as described by FC often included aspects concerning relational autonomy [
40], e.g. in terms of inter-relatedness of decisions that have to be taken, and concerns for others, e.g. in terms of achieving consensus.
In the course of both paths connected to ethical challenges, FC described detrimental external factors that, under the given circumstances, added emotional burden. Our findings showed that sufficient time, information and support from the social environment and from the physicians early on could prevent elevated burden. The necessity of providing FC with enough time and emotional support during decision-making processes has been highlighted in previous studies [
15]. Relatedly, FC could be better prepared for the upcoming events through adequate form and content of caregiver-physician communication, and eventually deal with or even avoid moral distress. Prior works have described the importance of good communication skills of healthcare providers to sufficiently prepare FC for substitute decision-making [
15] and discussions around end-of-life care decisions [
41]. Strategies to improve FCs’ preparedness include the use of online tools for advance care planning [
42] or palliative care-led family meetings [
43]. Ethical guidance for healthcare providers to optimize relationships with FC that also address communication in palliative care and end-of-life scenarios are available [
7]. Healthcare providers can offer ethical support, e.g. by assisting FC to recognize and discuss the ethical dimension of their experiences. FC should be prepared that probably difficult decisions will come up in the disease trajectory, which may be perceived as morally troubling. Professionals may take the therapeutic opportunity to communicate that many FC share such experiences under these circumstances, reminding them that people are “moral agents” [
19]. FC can be informed about available sources of support in dealing with morally troubling situations and emotional discomfort.
FC described being in high distress when they could not act according to their moral expectations and values due to perceived external or internal constraints. They felt disappointed in themselves or in the physicians, and doubted about their decisions or actions. This distress as a consequence of the violation of FCs' moral expectations and values is referred to as moral distress [
18], which involves a crisis of conscience [
20]. It differs from emotional distress [
18,
22] and has been described as a highly burdensome and negative experience in FC [
44]. Yet, moral distress seems to be an under-recognized phenomenon in the vulnerable situation of family caregiving [
45]. While emotional burden may be addressed by counselling and access to psychological support for FC, presumed moral distress or ethical issues might request the inclusion of clinical ethicists. Research shows that different forms of clinical ethics support exist, which give advice and recommendation to healthcare providers, patients and their families [
46,
47]. One way to support FC in dealing with ethical challenges has been through ethical consultations. A study suggested that consultations helped FC in various ways including increased clarity on the ethical problem, facilitation of the decision-making process, and consolation [
47]. In order to optimize supportive care for FC in potentially ethically challenging situations, offers of support should stay flexible and adaptable to meet FCs' needs, allowing for the integration of ethical counselling. Further, it has to be considered that FC involved in decision-making or acting as substitute decision-makers operate in interpersonal relationship networks with social and moral obligations. Complex agendas, needs and interpersonal dynamics in the family system may shape the experiences and decision-making of FC in palliative and end-of-life care [
48,
49]. To better understand such a complex phenomenon as ethical challenges in FC of terminally ill patients, a systemic approach that accounts for the interactions, mutual influences, hierarchies and boundaries of family systems may be helpful in psychological and ethical counselling.
Moreover, FC that experienced moral distress noted that physicians’ empathetic approach and acknowledgment of the caregiver role in addition to the validation of their emotions helped them find closure. Physicians’ ownership and acknowledgment of presumed mistakes that may have happened during the patient’s disease trajectory, could potentially reduce the FCs’ feelings of disappointment and frustration and prevent moral residue, which is congruent with the results of a previous study [
7]. FC also described that self-acceptance and having no regrets about the loved one’s death as pivotal regarding the prevention of moral residue. Empirical evidence confirms the considerable role of regret among FC during palliative and end-of-life care or bereavement. Types of regret reported in the literature include something FC were not able to do for the deceased, the decision to admit a patient to a palliative care ward, not insisting for better care, and not having talked about death [
50‐
53]. The role of healthcare providers as well as clinical ethicists could be to facilitate awareness and communication about end-of-life decisions, and to support FCs' reflections on ethical issues to reduce ambiguity and regret.
Strengths and limitations
Our study has some strengths and limitations. By interviewing grieving FC of terminally ill patients, we investigated the unique experiences from the subjective perspective of this person subgroup itself, which is a major strength. Our endeavor of validating our findings included analysis and discussion of data by a multi-professional research team. Using the grounded theory approach and abductive reasoning, we were able to generate an in-depth understanding and explanations for paths connected to ethical challenges in FC. Regarding the limitations of our study, caution is required regarding the generalizablility. Our results cannot be generalized to FC of patients with other chronic diseases than cancer (e.g. dementia, organ failure), since disease trajectories differ significantly [
54]. Nevertheless, we are positive, that our study provides important clinical implications that are transferable to non-cancer settings. Furthermore, the missing perspectives of the grieving FCs' who declined interview participation due to own serious health issues or grief-related emotional burden may have biased our findings, and we may not have reached theoretical saturation for the group of FC struggling with negative physical or psychological health conditions. The retrospective reinterpretation of morally troubling situations possibly affects the description of the experienced. However, after-death interviews are an important tool to study the situation of FC in the context of advanced cancer [
55,
56].
Conclusion
Ethical challenges add complexity to the caregiving experience of FC in palliative and end-of-life care. Findings can be used as guidance for healthcare providers to early detect morally troubling situations, as they are a potential source of ethical challenges in family caregiving for a terminally ill patient. Although healthcare providers cannot prevent FC from experiencing morally troubling situations, they should be aware of ethical issues that may arise. Providers can, for example, assist FC by helping to identify ethical issues, by enabling FC to reflect and verbalize burdening aspects and emotionality, and by clarifying FCs’ (lacking) resources and coping skills. We identified specific detrimental factors, which caused additional emotional burden and moral distress after a morally situation had occured. Knowledge on these factors may increase healthcare providers’ sensitivity related to communication styles, information giving and emotional support of FC who experience morally troubling situation. Our findings might assist in developing practice guidelines and interventions for the target group of FC caring for terminally ill cancer patients as well as training for healthcare providers. Training may strengthen providers’ skills to proactively deal with affected FC, e.g. how to detect and manage ethical challenges in FC, and how to maintain an effective collaboration with FC under these circumstances. Future research is needed to specifically explore factors that result in moral residue among FC in palliative and end-of-life care, and ways to prevent it.
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