Ethical Concerns of Patients and Family Members Arising During Illness or Medical Care

Abstract

Patients and family members (N=671) were surveyed in five Mid-Atlantic US hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically rather than exclusively on a case-by-case basis.

Introduction

The experience of significant illness can profoundly affect the lives of individuals. It can rupture a sense of wholeness and invincibility. The experience inevitably involves modification of expectations and goals, change in anticipated opportunities and plans, rebalancing of priorities, and alteration of behavior and activities. Family members, who accompany patients through the experience of illness, face their own adjustments. Both patients and family members are required to balance competing needs. As they engage with the healthcare system, they hear new information about their prognosis and treatments and weigh treatment options. In light of these events, the perspectives of patients and their family members regarding the ethical questions and concerns that arise during illness are fundamental to understanding their experiences and subsequent preferences for treatments.

The published literature regarding the ethical concerns experienced by patients and family members is perhaps most richly displayed in the medical humanities (Jones 1996; Charon 1995) and more specifically in the narrative ethics literature (Charon and Montello 2002). This literature provides vivid descriptions of the particular concerns of specific individuals in their own words or those of a narrator but is not necessarily well-suited to provide a comprehensive overview of patients’ and families’ concerns. Systematic surveys of ethical concerns have largely studied the concerns of healthcare providers (DuVal et al 2004; Hurst et al 2007; Ulrich 2010).

To systematically explore and understand the ethical questions and concerns that patients and families experience, we conducted a multi-hospital survey of patients and their families. The overall aims of the study are to address three primary research questions: 1) What ethical questions do individuals face in the course of their own or their loved one’s illness and clinical care? 2) Do they discuss these ethical questions with member(s) of their healthcare team and, if so, how comfortable and helpful are these discussions? 3) Are they aware of the availability of clinical ethics consultants and would they be interested in using ethics consultation services? We previously reported an initial qualitative analysis based on the first wave of study participants regarding the types of ethical questions and concerns that patients and family members have (Cho et al 2020). We now report the quantitative findings of the full study sample. This report addresses the first and third research questions and thus focuses on a quantitative analysis of the general prevalence and types of ethical questions reported by patients and family members, the association between respondent socio-demographic characteristics and the types of ethical questions they experienced, and the awareness and interest of patients and families in clinical ethics consultation. An extensive analysis of the second question regarding communication between patients or family members and their healthcare providers regarding ethical concerns will be reported separately.

Methods

Study Design

This study is a cross-sectional, mixed-methods survey examining patients’ and family members’ ethical questions and concerns.

Participants

We surveyed English-speaking adult (18 years or older) patients receiving inpatient care or their family members (i.e., relatives and significant others). We recruited participants from five hospitals in the D.C.-Baltimore metropolitan area: a public university hospital, a private university hospital, a non-profit academically-affiliated medical center, a military hospital, and a religiously-affiliated hospital. Trained research assistants enrolled patients and family members from the general medicine and surgical inpatient units and family members from Intensive Care Unit (ICU) waiting rooms of each hospital. Patients located on medical or surgical wards were first invited to participate. If the patient preferred to have a family member respond, the family member was invited. In rare cases, patients in intensive care units were able to be interviewed directly; otherwise, available family members of those patients were invited to participate to report their own experiences without approaching the patient.

Patients completed the survey either on their own or with the assistance of a family member or a research assistant, to reduce the burden of participation for sick individuals. Research assistants did not have access to any information about recruited patients’ medical history. Patients who were in isolation for infection control were not surveyed for safety reasons. As required by one of the hospital IRBs, patients who were in distress, in the midst of receiving clinical care, or who would be inconvenienced in other ways by the study (e.g., disruption of sleeping or eating) were not approached to participate in the survey to avoid disturbing them.

Research assistants, including healthcare trainees (public health, nursing, and medical students) and bioethics fellows, received training that included Collaborative Institutional Training Initiative (CITI) modules, orientation to the study protocol, review of survey research principles, and practice with administering the survey. Research assistants used a survey facilitator script and a Frequently Asked Questions sheet to standardize answers to participant questions about the survey.

All participating hospitals had ethics consultation services that cooperated with this survey. Study participants were notified that research assistants were not able to address ethical concerns and were informed after survey completion about how to contact the hospital’s ethics consultation service if they wished to do so.

Survey Instrument and Measures

The survey included the following description of ethical questions intended to be consistent with the American Society for Bioethics and Humanities Task Force’s description of the boundaries of Healthcare Ethics Consultation (ASBH Task Force, p. 4):

“This survey is about ethical questions. As you answer this survey, please think about questions and concerns that you or your family member have had while being sick and getting medical care. Think about times when you were unsure what to do. Think about times when you had disagreements about what to do. You might think about the medical advice you got from a doctor, your own values, your family values, or practical issues. Sometimes there is not one right answer. What is right for one person is not right for another person.”

The survey had four parts. In part one, participants were asked whether they were currently experiencing and/or had previously experienced any ethical concerns during their or their family member’s illness or medical care. They were provided a list of circumstances that commonly lead to ethical questions or concerns: e.g., limiting treatment at end-of-life, advance care planning, changing goals of care, uncertainty about decision making capacity, information privacy, family disagreements, healthcare access and cost, disagreements with doctor recommendations, research enrollment, genetic testing, dangerous behavior in a family member, communication concerns, and reproductive decisions (see Table 2). We modified this list from a previous survey of U.S. internists’ experiences with ethical dilemmas and supplemented the list with concerns described by nurses and ethicists in survey research (DuVal et al. 2004; Cheon et al. 2015; Kesselheim et al. 2010; Ulrich et al. 2010). Participants were also asked whether they had experienced other ethical concerns not covered in the list provided. Part two of the survey focused on the extent and value of communications regarding participants’ ethical concerns. Part three inquired about respondents’ knowledge and interest in clinical ethics consultation, and part four collected demographic information. The survey instrument is shown in Appendix A.

Table 2.

Ethical questions experienced during one’s own or family member’s illness or medical care

Ethical question	Now (N)	Past (N)	Both (N)	%*
A. You or a family member were terminally ill and there were questions about limiting life sustaining treatment	52	134	6	28.6
B. You or a family member were not sure how to plan ahead or complete an advance directive	72	118	7	29.4
C. You or a family member were getting care for a medical condition and wondered about changing the goals to comfort care	73	94	7	25.9
D. You or your family were not sure whether someone in your family was able to make their own decisions	69	117	10	29.2
E. You or a family member were not sure whether to tell some personal medical information to others in your family	64	105	8	26.4
F. There was disagreement in your family about the best choice of treatment for someone in your family	46	100	10	23.3
G. You or a family member had trouble getting healthcare you thought was needed	57	94	6	23.4
H. You or a family member were not sure about whether to take a treatment because you worried about the cost	61	99	16	26.2
I. You or a family member disagreed with your doctor’s treatment recommendation	41	111	9	24.0
J. You or a family member were not sure about whether or not to enroll in a clinical trial	28	57	8	13.9
K. You or a family member were not sure about receiving genetic testing, and/or what to do with genetic testing results	22	49	4	11.2
L. You or a family member wondered what to do about someone in your family who was doing something dangerous to him/herself or to someone else	27	96	7	19.4
M. You or your family member wondered if the medical team was holding back information from you	39	94	5	20.6
N. You or a family member were not sure what to do about reproductive decisions or care	21	28	3	7.8
O. If you or your family member were unsure what to do about some other ethical question	5	29	0	5.1

^*Combined percentage of all participants who reported experiencing this ethical concern at present, in the past, or both.

Two rounds of cognitive testing interviews were conducted to determine the accessibility and clarity of the instrument. First, ten hospital staff volunteers answered a series of questions after each survey item to evaluate their interpretation of and the level of difficulty experienced with the survey items. The revised survey was then retested with six hospitalized patients and family members, who, after completing the survey, were asked questions to ensure that the survey items were consistently interpreted.

Human Subjects Protection

This survey, which did not involve collection of individually identifiable information, was considered exempt from IRB review by the NIH Office of Human Subjects Research Protection, and by the Institutional Review Boards of each of the participating hospitals. As noted above, the IRB of one participating hospital required exclusion of any individuals who were in distress, actively receiving clinical care, or who would be inconvenienced in other ways by the study. Patients were given information about the study and asked to indicate their willingness to participate by checking a box but were not asked to sign their names. Completed surveys were sent to the National Institutes of Health, and data were entered into a secure database.

Analysis

The analyses presented in this paper focus on responses to the first and third parts of the survey instrument about the types and prevalence of ethical questions that individuals encounter regarding their own or their loved one’s illness and clinical care as well as knowledge, experience with, and interest in clinical ethics consultation. We also examined the data to explore any associations between participant demographic characteristics (i.e., age, gender, marital status, birthplace, race/ethnicity, religious preference, employment, education level, household income, and health insurance) and the outcome variables. To examine these associations, responses to questions A- N (listed in Table 2) were grouped into clusters as shown in Table 3.

Table 3:

Clusters of Concerns

Cluster	N	%
End of life, goals of care1	251	37.4
Planning for or dealing with possible lack of decision-making capacity2	287	42.8
Information privacy or disclosure3	243	36.2
Disagreements4	238	35.5
Access and cost concerns5	233	34.7
Decisional quandaries (research, genetic testing, reproduction)6	150	22.4
Worries about harm to self or others7	130	19.4

^1.Items A and C

^2.Items B and D

^3.Items E and M

^4.Items F and I

^5.Items G and H

^6.Items J, K, and N

^7.Item L

We performed chi-square tests to assess the associations. All reported p-values are two-sided and not adjusted for multiple hypothesis testing. Instead, we used an adjusted p-value threshold of 0.05 divided by the number of associations examined (Bonferroni correction). This adjusted threshold provides a rough estimate of what can be considered as meaningful evidence against the null hypothesis of no associations between demographic characteristics and ethical issues identified. For the association between the 10 participant demographic characteristics and the 14 ethical issues identified, the adjusted p-value threshold of 0.0004 (=0.05/(10×14)) was used as a general guide. For the association between the 10 participant demographic characteristics and the 7 clusters of ethical issues identified, the adjusted p-value threshold of 0.0007 (=0.05/(10×7)) was used as a general guide. Results with p-values near or less than the adjusted threshold are highlighted in the paper. Table 1 of Appendix B provides the unadjusted and false discovery rate (FDR) adjusted p-values.

We also performed multivariable analyses to identify associations between each ethical issue or cluster of issues and an optimal set of participant characteristics. This was accomplished through a variable selection process where the response (dependent) variable is the cluster of issues, and the candidate explanatory (independent) variables are the demographic characteristics. From that process, the “best” set of predictors was selected from the pool of demographic characteristics (see Appendix B, Table 2).

RESULTS

Participant characteristics

Overall, 671 individuals participated in this survey (response rate, 36.8%); 485 were patients, 182 were family members, and 4 did not specify whether they were a patient or family member. Patients and family members were demographically diverse with respect to race, gender, income, and religious preference (Table 1). The vast majority were born in the US and had health insurance. The demographic profile of participants who were family members revealed that they had similar characteristics to patients, but tended to be younger and were more likely to be White, female, and employed and less likely to be Black/African American (Table 1).

Table 1.

Participant (patient or family member) demographics

	Patients (N=485)	Family members (N=182)
Age
18–44	85 (18%)	48 (26%)
45–64	179 (37%)	71 (39%)
65+	171 (35%)	38 (21%)
Gender
Male	238 (49%)	55 (30%)
Female	225 (46%)	115 (63%)
Marital status
Married/living with partner	201 (41%)	111 (61%)
Widowed	50 (10%)	10 (5%)
Divorced/separated	66 (14%)	19 (10%)
Single	139 (29%)	29 (16%)
Birthplace
U.S.	396 (82%)	153 (84%)
Outside the U.S.	63 (13%)	17 (9%)
Race
White	180 (37%)	87 (48%)
Black/African American	222 (46%)	54 (30%)
Hispanic	23 (5%)	11 (6%)
Asian	11 (2%)	8 (4%)
Multiple/other	23 (5%)	11 (6%)
Education
High school or less	137 (28%)	35 (19%)
College	212 (44%)	94 (52%)
Graduate school	109 (22%)	39 (21%)
Household income
<–$25,000	105 (22%)	21 (12%)
$25,000-$49,999	83 (17%)	21 (12%)
$50,000-$99,999	102 (21%)	54 (30%)
>$100,000	93 (19%)	52 (29%)
Religious preference
Protestant/other Christian	237 (49%)	82 (45%)
Catholic	94 (19%)	44 (24%)
No religious preference	87 (18%)	28 (15%)
Other	38 (8%)	17 (9%)
Employed
Yes	177 (36%)	115 (63%)
No	283 (58%)	54 (30%)
Source of insurance
Employer	111 (23%)	74 (41%)
Plan paid for by self or family	29 (6%)	26 (14%)
Medicare	115 (24%)	31 (17%)
Medicaid	72 (15%)	11 (6%)
Military or veteran	29 (6%)	7 (4%)
Multiple/other	81 (17%)	15 (8%)
None	13 (3%)	3 (2%)

^*4 participants did not indicate whether they are a patient or a family member. Percentages do not add up to 100 because missing data were not included in the table.

Ethical concerns

Seventy percent of patients and family members had at least one (range 0–14) type of ethical concern or question either at the time they were responding to the survey or at some time in the past (Figure 1). The frequency of each type of concern is shown in Table 2. The most commonly experienced concerns were: not being sure how to plan ahead or complete an advance directive (29.4%), not being sure whether someone in the family was able to make their own decisions (29.2%), and questions about limiting life sustaining treatments (28.6%). Questions about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%) were also frequent. Other concerns noted included: concern about obtaining an autopsy to ascertain cause of death of a family member, uncertainty about who to contact for important information about a novel procedure, and concern when a family member attempted suicide in a hospital.

Figure 1:

Number of Ethical Questions Experienced

When concerns were clustered into categories, more than one third of all participants reported concerns related to lack of decision-making capacity, decisions about end-of-life care and goals of care, privacy and disclosure, disagreements, and access and cost concerns (Table 3).

Association between personal characteristics and types and number of concerns

None of the associations between participant demographic characteristics and any of the ethical issues reached statistical significance. However, the following trends emerged (Appendix B, Table 1): Participants without health insurance tended to be more likely than publicly insured or privately insured participants to be unsure about reproductive decisions or care (p=0.0006) and more likely to wonder if the medical team was holding back information from them (p=0.0009).

When ethical concerns were clustered into seven categories, participants without health insurance were found to be more likely than participants with public or private health insurance to have concerns about costs of and access to care (81.3%, 33.4% and 33.5, respectively; p=0.0004). Additionally, several trends were noted for the seven clusters of ethical questions and participant characteristics (Appendix B, Table 2). Participants who were over age 65 tended to be less concerned about costs of and access to care than respondents who were 18–44 years old (26.3% versus 40.6%, p=0.015). After adjusting for multiplicity by using the p-value threshold of 0.0007, the evidence of this association should be considered weak. In multivariable analyses, participants who were younger than 65 showed a tendency to have more concerns regarding access and cost (p=0.002), after controlling for employment status (p=0.011) and health insurance (p=0.043). After adjusting for multiple testing, the evidence for even this association should be considered weak.

None of the participant demographic characteristics was found to be significantly associated with the total number of the various types of ethical concerns experienced by each respondent, although there was a tendency for older participants to recall more types of ethical concerns (p=0.093). The number of types of ethical concerns that respondents experienced did not vary by hospital or by hospital ward (medical, surgical or intensive care).

Knowledge and Attitudes Regarding Clinical Ethics Consultation

Overall, 197 participants (29.4%) reported that they had any knowledge about clinical ethics consultants. Overall, 48 participants (7.2%) reported getting help from an ethics consultant in the past. Most were interested in getting help from ethics consultants in the future (Not interested: N=114 (17.0%); a little interested: N=264 (39.3%); very interested: N=250 (37.3%)).

Factors that would make a patient or family member more interested in talking with an ethics consultant were: a doctor’s recommendation (N=49, 7.3%); knowing how much a consultation costs (N= 8,1.2%); knowing how ethics consultants are trained (N=14, 2.1%); knowing more about how they help (N=66, 9.8%); meeting them (N=40, 6.0%); more than one of these factors (N=366, 54.6%); something else (N=18, 3%). In univariable analysis, college graduates and individuals with postgraduate degrees were more likely to know about ethics consultants than participants without a college degree (34.9% vs. 22.2%, chi square p=.010). Participants who had disagreed with a doctor’s treatment recommendation were less likely to know about ethics consultants than participants who had not disagreed with a doctor’s treatment recommendation (23.0% vs. 33.7%, Fisher’s exact test, p =0.015) There were no associations between ethnicity/race and interest in ethics consultation services.

Discussion

This study provides a systematic picture regarding the number and types of ethical concerns that patients and family members have during illness and clinical care derived from a large sample in the Mid-Atlantic US. In doing so, it enables healthcare providers and clinical ethics consultants to be cognizant of situations that are especially ethically challenging for patients and families.

Overall, the vast majority (70%) of patients and family members who participated had experienced at least one type of ethical concern or question. The most prevalent types of concerns were those involving planning for or dealing with possible lack of decision-making capacity, end of life/goals of care, information privacy or disclosure, disagreements with either clinicians or family, and healthcare access and cost concerns. Of note, neither the number nor the type of ethical concerns significantly varied by age, gender, race/ethnicity, education, or other demographic characteristics.

Our results show that patients and families had similar concerns to those that clinicians recognize as ethical issues (Duval et al 2004). Specifically, the prevalence of patient and family member concerns about end-of-life care, limiting life-sustaining treatments, and decision-making capacity, seems to parallel the most common concerns of physicians. In a survey of general internists, oncologists and critical care physicians, the most recent concern they could recall pertained to end-of-life issues for 51%, 55%, and 78% of these specialists, respectively (Duval et al 2004). Concerns about how to respect patient autonomy, justice (such as lack of access to insurance and medical care), and conflicts of any kind followed, in descending order of frequently recalled. This picture of the most common types of ethical concerns that preoccupy both clinicians and those they care for is perhaps not surprising since ethical quandaries have notably proliferated over the last half-century as life-sustaining treatments have become available. Such end-of-life decisions involve a large amount of discretion and naturally provoke ethical uncertainty among patients and families. Concerns about decision-making capacity, which can result from many clinical conditions and age, often create tension in families as they negotiate respecting the autonomy of their sick loved one and deciding what is best for them.

However, it is notable that in this survey which ascertained ethical concerns directly from patients and family members, that many of the concerns are ones that arise outside of the bounds of the traditional clinical encounter. These concerns focus on interpersonal issues in the family, such as whether to disclose medical information to other family members, how to handle family disagreements about medical care, how to handle dangerous behavior of a family member, and how to care for family members who are not able to care for themselves. Our data add an important source of information and insights about the ethically fraught experiences of patients and families. While efforts have been pursued to identify the top ethical concerns of the public, for example through ascertainment of the views of ethics consultants (Breslin et al. 2005), such indirect approaches do not involve solicitation of information directly from patients. In Breslin’s study, which was conducted in Canada, the top challenges ranked by the group were disagreement between patients/families and health care professionals about treatment decisions, waiting lists, and access to needed resources for the aged, chronically ill, and mentally ill. Similarly, a survey conducted in Saudi Arabia included healthcare providers’ and ethics committee members’ impressions about ethical concerns of the public. (Alkabba et al. 2012). This Saudi Arabian survey revealed that predominant concerns, in descending order, pertained to patients’ rights, equity of resource allocations, confidentiality of patients, patient safety, conflict of interests, ethics of privatization, informed consent, dealing with the opposite sex, beginning and end-of-life issues, and healthcare team ethics. The difference in the dominating concerns reported in these countries is noteworthy. However, further studies are needed to determine whether the dominating concerns identified among the public in these two countries would have been more similar had the study methods been the same or whether attention to various ethical concerns are genuinely different across cultures and political regimes such as these. Other published surveys have provided more direct evidence of patients’ perspectives but have focused on attitudes regarding a particular topic of ethical concern, such as family caregiver concerns about patients with dementia, rather than an array of ethical concerns as we have studied here (Pratt 1987).

The survey results also provide important insights regarding patient and family knowledge about and interest in clinical ethics consultation. Knowledge about ethics consultation services exceeded actual use of consultation services in the patients and family members sampled, but interest in using such services in the future was substantial. It is concerning, however, that less educated participants and participants who had had disagreements about treatment recommendations tended to be less knowledgeable about ethics consultation. Without knowledge about such services, some disadvantaged individuals will have less opportunity to make use of ethics consultation. As Blackler and colleagues have recently written, empowering patients and families to request clinical ethics consultations can provide them with a pathway for voicing their concerns, strengthen the patient/family-clinician relationship, enhance shared decision-making and improve patient centered care (Blackler et al 2021).

We acknowledge several limitations in our study. For example, our sample was limited to patients and family members who were hospitalized on medical, surgical, and intensive care units. Thus, although we asked participants to enumerate the ethical concerns they may have had at other times in their lives, they may have not recalled (or mentioned) concerns related to mental health, obstetrics, or pediatric experiences. Furthermore, our study sample excluded individuals who were in distress, actively receiving clinical care, or who would be inconvenienced in other ways by participating in the study. While it is possible that the exclusion of these patients might have altered the reporting of certain types of current ethical concerns, we surmise that it would not reduce the accuracy of reporting of ethical concerns that occurred in the past. We also note that concerns regarding limiting life-sustaining treatment, concerns about disagreements with treatment recommendations, and concerns about a family member’s dangerous behavior were reported relatively less frequently in the present than in the past while other concerns were not reported any less frequently in the present than in the past (as shown in Table 2). Another limitation is that we asked participants to simply provide a binary response to a list of possible ethical concerns, hence we do not know extensive details of these concerns such as time or place. An additional limitation of this study relates to the exclusion of non-English speaking individuals. The study presents an otherwise diverse sample that is varied by age, race/ethnicity, income, and education, and includes many participants who have faced socio-economic disadvantages – particularly a substantial number of minorities, low-income, and less-educated participants. The percentage of our participants who were born outside of the US is similar to the percentage of residents in Washington, DC and Maryland who identify as immigrants (https://www.americanimmigrationcouncil.org/research/immigrants-in-washington-dc). As such, it provides an inclusive picture of ethical concerns of a population.

Although we found almost no evidence of associations between participant characteristics and particular ethical concerns, trends did emerge. Individuals without health insurance tended to have more concerns about cost of and access to care than those with health insurance. In addition to fears about not receiving the care they thought was needed, these participants without health insurance also tended to be unsure about whether to even pursue treatments because they worried about the cost. Lack of health insurance also tended to be associated with being unsure about reproductive decisions or care and wondering whether the medical team was holding back information. Participants over 65, who are often insured through Medicare, tended to be less likely to have concerns about costs and access to care than younger patients. The evidence from these associations was weak after adjusting for multiplicity, but we would suggest that it is nonetheless informative and important to report on these general trends particularly as clinical ethicists consider how to attend to equity concerns in the course of practicing ethics consultation (Danis 2021, McDuffie et al 2021, Myers 2021, Vo 2021).

We suggest several practical take away messages for healthcare ethics consultants from this study’s findings. The ASBH Report regarding core competencies (ASBH 2011, p. 5) lists the scope of questions that arise in healthcare ethics consultation, such as those that arise during shared decision making, end-of-life practices, resource allocation, and others. However, our findings in this study indicate that the scope might be usefully expanded to include the frequent questions that patients and families are concerned about outside the bounds of the clinical encounter, such as the concerns that arise in the course of intrafamilial interactions (Nelson and Nelson 1995).

We suggest several concrete ways that the ethical concerns described in this study might be addressed by healthcare ethics consultants. For example, as several healthcare ethics experts who commented on the initial findings of this study have mentioned, healthcare ethics consultants might consider more avenues for engaging with patients and families, including websites, patient access platforms, social media, and brochures (Mabel et al 2020). In addition, consultants should treat families as moral agents rather than merely elements of the context surrounding the patient (Seidlein and Salloch 2020). Patients and families might also be included more often in ethics consultations (Ho 2020) and be invited to take part in the process of deliberation and problem solving (Widdershoven et al 2020). Consultants might bear in mind that patients and families are likely to experience moral distress just as clinicians do (Ulrich 2020). Further, consultants should be aware that patients and families may have concerns that clinicians may be unlikely to bring to the ethics consultant’s attention, particularly when patients and families feel that they have been mistreated (Feister 2020). Since, at present, it is unusual for patients and families to request ethics consultations personally, consultation requests from clinicians might provide an opportunity for consultants to provide clinicians with insights about the concerns their patients and family members are likely to be experiencing and offer assistance with a range of common patient/family ethical concerns.

Finally, one of the valuable implications that can be derived from this study is that healthcare ethics consultants should explore effective approaches to addressing concerns that are prevalent and troublesome for a substantial percentage of patients and families systematically, rather than exclusively through one-on-one solutions offered by well-meaning clinicians and clinical ethicists. Policy reforms such as more affordable and adequate health insurance coverage for low- and moderate-income patients who remain uninsured or underinsured are needed. In addition, providers should be transparent about what treatments are available to patients and families and how much such treatments cost, regardless of the patients’ ability to pay. Possible solutions to the concerns frequently mentioned by study participants might also include better preparation for end-of-life decision-making and more clarity about how to handle situations when patients may lack decision-making capacity. Other prevalent concerns, such as lack of transparency about treatment options, might warrant both more explicit communication on the part of individual providers as well as systematic improvements in conveying medical information to the public.

The findings in this study about the ethical issues that are most often pressing for patients and families, such as end-of-life decisions, access to care, and cost concerns, should prompt clinical ethics consultants to consider how they might usefully engage in most effectively addressing these concerns in a manner that promotes equity and patient trust. Clinical ethics consultants should also be aware that more socio-economically disadvantaged patients tend to be less aware of ethics consultation services. As such, consultants should go the extra mile to make consultation services familiar and available to them.