Communication of patients’ and family members’ ethical concerns to their healthcare providers | BMC Medical Ethics

This study examines patients’ and family members’ reports of communication with healthcare providers regarding ethical concerns that arise during their own or their family members’ illness and healthcare. The majority of survey respondents reported an ethical concern and most reported speaking to a healthcare provider, often in addition to speaking with family and friends.

Our findings demonstrate that patients and family members find having discussions with a wide variety of individuals, especially healthcare providers, helpful when faced with ethical questions and concerns during illness and medical care. However, a substantial minority, about one out of four individuals, did not speak to a healthcare provider, and approximately another quarter did not find the discussion with healthcare providers to be helpful. Notably, sociodemographic variables, like race and ethnicity, were not associated with the likelihood that the respondent spoke to a healthcare provider.

In thinking about the ethically challenging situation they remembered best, the majority of survey respondents were not embarrassed, felt like they had enough privacy, understood the situation was important, did not feel powerless to voice their opinion, and wanted advice from the healthcare provider. The only association found between the individual attitudinal factors and respondent sociodemographic variables was respondent race which was significantly associated with whether they were unsure if the situation was important. In a setting where they are often underrepresented, minority patients and families may feel less assertive and more passive in their healthcare encounters [13, 14]. Power imbalances may make minority patients feel intimidated or unqualified and lead them to doubt the importance of their ethical concerns. The finding lends support to the recommendation that healthcare organizations should create an environment where patients and families from all backgrounds feel comfortable and confident speaking up about their concerns and moral distress. One way to promote comfort for minority patients and family members is to diversify the healthcare workforce [15]. Aside from more listening, providers should also be more attuned to actively eliciting patient and family concerns and helping them understand that their concerns are legitimate and appropriate topics for discussion.

The majority of respondents said their healthcare provider seemed trustworthy and kind, spoke in a way that was easy to understand, was a good listener, seemed to fully understand the situation, and was not a part of the problem. Respondents varied more widely with whether they felt the healthcare provider seemed very busy. Although this variable was not associated with the likelihood that respondents spoke up, busy clinician schedules could, and likely do, affect communication since trust-building and in-depth conversations, particularly those required for ethically challenging situations, require time. Many respondents, in fact, thought more time with the healthcare provider would have made discussing their concern more comfortable. These results build on existing evidence on the importance of unrushed visits and more time in promoting patient satisfaction and trust [16, 17].

Patients and families reported that they were more likely than healthcare providers to initiate this discussion. These findings are consistent with the cultural shift in medical practice in which patients play an increasingly active role in their care [5]. Our findings highlight that though it may be hard to anticipate what will be concerning to patients, it is important for healthcare providers to give patients and families the opportunity to bring these issues up.

When conversations about ethically challenging situations were considered comfortable and helpful, respondents primarily pointed to the content and quality of communication as facilitating factors (Table 6). Wanting more information was the most frequent response in each of the open-ended questions. For patients and family members facing ethically challenging situations where they are not sure what is the “right” thing to do, clear information regarding the disease process, prognosis, treatment options, and risks and benefits is paramount in helping decision-making [18, 19]. Surveys, including our own, show that most patients and families wish to receive as much information as possible, perhaps to cope with uncertainty [20,21,22].

Notably, a subset of respondents did not find the discussion regarding their ethical concerns helpful and/or comfortable. Respondents’ suggestions for improving the comfort and helpfulness of discussions (Tables 5 and 7) correspond well to recommendations in the literature for clinicians when they are called upon to have difficult conversations, such as giving bad news and initiating discussions about palliative or end-of-life care [23, 24]. The evidence from our survey suggests that clinicians ought to be prepared to have discussions about ethically challenging concerns that arise throughout the life cycle of patients, not just at the end-of-life. Some skills that are essential to navigating difficult conversations include asking open-ended questions (exploration) to gauge a patient’s or family member’s knowledge before giving information (asking before telling), listening without interrupting, and addressing emotions with empathy (feelings before facts) [23,24,25].

Empathy was one prominent healthcare provider quality that respondents mentioned time and time again to make discussions regarding ethical concerns more comfortable and helpful (Tables 5 and 7). Patients and their families often enter clinical environments at extraordinarily stressful and traumatic moments in their lives, facing medical uncertainty and difficult decision-making. Empathy is considered one of the most powerful ways of providing support to patients and families by reducing their feelings of isolation and validating their thoughts and feelings [24].

When accounting for what would have made conversations about ethical concerns more comfortable and helpful, a large number of respondents mentioned contextual factors apart from communication quality and healthcare provider characteristics (Tables 5 and 7). Many pointed to providing sufficient resources or referrals—these findings recognize and affirm the importance of the larger healthcare team. Some respondents felt emotionally unprepared or did not feel like they had the health literacy to navigate these difficult conversations. Others felt like having a previously established relationship would have been made these discussions more comfortable and helpful. There was also a significant number of respondents who wanted the involvement of their family in these ethically challenging discussions, because they rely on familial relationships to help them feel supported or make decisions. This finding supports a growing recognition that appropriately engaging the family, if a patient so desires, can augment respect for a patient’s autonomy [26].

Our study has several limitations, as described in Cho et al. 2020, including variable response rates; one geographic region; selected inpatient areas; exclusion of patients who did not speak English or were in distress, eating, sleeping, in isolation or with a provider; a cross sectional survey; and the possibility of recall bias [4]. In addition, since we asked participants about the most memorable ethical concern they faced, it may be unsurprising that such a high percentage of them spoke to a healthcare provider about these concerns. In instances patients and families recall less well, which may have been less emotionally challenging or impactful, the percentage who spoke to a healthcare provider might be lower.