The majority of Medicare beneficiaries of all race/ethnic groups say that in the event of a terminal illness with less than a year to live they would want to die at home and would not want to receive life-prolonging drugs with uncomfortable side effects or mechanical ventilation for 1 weeks’ or 1 months’ life extension. However, there were differences in the distribution of preferences for end-of-life medical treatment by race/ethnicity even after controlling for potentially mediating or confounding demographic and sociocultural variables. Specifically, black beneficiaries were more likely than Hispanic and non-Hispanic white beneficiaries to prefer life-prolonging drugs and mechanical ventilation; both blacks and Hispanics were more likely than whites to prefer spending their last days in the hospital and to avoid potentially life-shortening palliative drugs.
Although blacks were more likely than whites to want life-sustaining treatments, they also were more worried about receiving too much medical treatment in their last year of life. We wondered if this was a reflection of concern among the majority of black beneficiaries who don’t prefer aggressive end-of-life treatment that the higher population prevalence of preferences for life-sustaining treatments among blacks would result in “statistical discrimination”26,27
by providers that would lead to more medical treatment than most blacks would prefer. Our data did not support this hypothesis, since there were no group-level differences in treatment preferences (for life-prolonging drugs, for palliative drugs, or for mechanical ventilation) among blacks who were and were not worried about receiving “too much” end-of-life treatment. There was a positive correlation between preferences for more intensive end-of-life treatment (preference for death in the hospital, for life-prolonging drugs, and for mechanical ventilation) and concern about “too much” end-of-life treatment among white respondents, but not among black respondents. The correlation among whites is paradoxical—we imagined those who would want more intensive treatment might be worried about receiving too little treatment and vice versa—but perhaps those who want more intensive treatment anticipate the possibility of “overdoing” it? That the correlation was not found among black respondents may reflect insufficient statistical power in the black cohort or point to systematic differences in the interpretation of the question about “too much” treatment by blacks and whites and a flaw in our survey question design. Without race-specific cognitive testing information about this survey item, we cannot interpret this finding; it deserves further exploration.
The concepts of race and ethnicity in the health services literature are imprecise constructs28
that conflate culture (e.g., beliefs, values, and customs), socioeconomic status, and “racialism” [i.e., “the ways in which we see, value, and behave toward others according to (some notion) of race”]29
. For example, Johnson et al. used a combination of sociocultural variables to completely explain black-white differences in advance directive completion rates and attitudes towards hospice31
. We sought to approach the explanation of differences in responses to our hypothetical treatment preference questions by using the conceptual framework of the behavioral model of health-care utilization and found several interesting relationships. Among variables hypothesized to predispose individuals to use health services, lower education, financial strain, preference for specialists, and an overly optimistic belief in the effectiveness of mechanical ventilation were each associated with one or more preferences for “more intensive” end-of-life treatment. Among these, the most mutable (and powerful) is the belief in mechanical ventilation, which may be a proxy for belief in health care technology more generally. Over 27% of blacks believed that 50% or more of persons receiving this life-sustaining treatment were returned to their normal activities, compared to 17% of non-Hispanic whites. In reality, 56% of patients who require mechanical ventilation for 48 h or more are dead at 1 year, and almost 60% of the survivors require caregiver assistance at 1 year32
. This, of course, is in stark contrast to the popular representations of life-sustaining treatments33
. Even among those with a more clinically realistic estimation of the effectiveness of mechanical ventilation, blacks were twice as likely as Hispanics and non-Hispanic whites to want a ventilator for life extension of 1 month or 1 week.
Among variables hypothesized to enable the use of health-care services, living alone was associated with a preference for dying in the hospital and not wanting mechanical ventilation. Daily church attendance and less than weekly contact with friends and family were associated with a preference against palliative drugs that might be life shortening. In our sample, relative to non-Hispanic whites, Hispanics and those of other race/ethnicity were less likely to live alone, and blacks were more likely. Some studies have implicated low support for in-home care as one factor in the low uptake of the Medicare hospice benefit among blacks34
. Among terminal cancer patients, those with greater religiosness are more likely to prefer life-sustaining treatments35
. The relationships between social networks and preferences for life-sustaining treatments have not been previously explored.
Among variables hypothesized to affect need, those in less than excellent health were more likely to worry about receiving too much medical treatment near the end of life, but self-reported general health did not otherwise affect our measures of preference for end-of-life care. Those reporting a conditon that frequently caused pain or discomfort were more likely to prefer pallative drugs, even if they might be life shortening.
Among provider variables, having a personal doctor was associated with greater concern about receiving “too much” medical treatment. Although blacks and Hispanics were much more likely than non-Hispainic whites to report that their doctor had never or only sometimes spent enough time with them, that there was medical care, tests, or treatment that they did not receive in the last year, and that they believed their community received care of lesser amount and quality, none of these factors was associated with our measures of end-of-life concerns and preferences. Interestingly, we found no differences by race/ethnicity in perceptions of the quality of one’s own health care, but significant differences in perceptions of the amount and quality of health care in one’s community.
Our survey has limitations, including survey and item-non-response, reliance upon a hypothetical scenario, and intentionally over-simplified preference questions3
. Non-response may limit generalizability. The non-contact rate was much higher among minorities, as was ineligibility due to inability to complete the survey (generally cognitive impariment or severe physical debility). Item non-response was much higher for the mail survey than the phone survey, and Hispanics were more likely to complete the survey by mail. This could confound our analyses by race/ethnicity if respondents with a stronger preference for (or against) life-sustaining treatments did not respond to these items. Other potential mode effects include greater pressure for social desirability and greater cognitive demands for phone, compared to mail surveys.
We created simplified survey questions, which may not predict actual treatment choices or receipt. Indeed, in a cross-sectional analysis of these data, higher regional end-of-life expenditures did not predict preferences for more intensive treatment22
. We did not use decision theoretical approaches such as the standard gamble to ensure all respondents considered the same alternative when offered a choice like mechanical ventilation or drugs for life-prolonging or palliation, nor did we quantify the strength of preferences. The alternative to the treatment offered held in the minds of respondents may have varied systematically by race/ethnicity, given different experiences with the health-care system. Additionally, we created artificial dichotomies; for example, we asked about life-prolonging drugs that “make you feel worse all the time” and palliative drugs that “make you feel better, [but] might shorten your life.” Life-prolonging treatments are not necessarily uncomfortable; indeed, many alleviate symptoms, and palliative treatments may extend life36
. Although we used a simplified dichotomy for research purposes, we recognize the danger in perpetuating the myth, held by many acute care providers (and perhaps among minority populations), that palliative care is a means to limit life-sustaining treatment or allow death37
. The implications of this misconception are important for all patients with life-limiting chronic illnesses, but particularly for minorities whose pain is even more undertreated38–41
Another weakness was the lack of a measure of “trust” in the health-care system, a much vaunted31,42–44
mechanism for differences in health-care use by race/ethnicity. We hypothesized that beneficiaries’ perceptions of the amount and quality of the health care received by their community were a measure of perceived equity that would capture a related construct. However, our community measure suffers from lack of specificity; some respondents may have considered those in their neighborhood, others may have considered a broader interpretation of “people like me” (e.g., religious or ethnic community). Finally, we used a hierarchical approach to assigning race/ethnicity; specifically, we did not treat Hispanic ethnicity as distinct from race, as is customary, nor did we allow multi-racial categories. So doing simplified our analytic models, but further oversimplifies the constructs of race and ethnicity.
In summary, most Medicare beneficiaries say they would not want drugs with uncomfortable side effects or mechanical ventilation for life extension in the event of a terminal illness. Preference for life-extension, and mechanical ventilation in particular, is associated with an overly optimistic belief in its effectiveness, a misperception that we as providers should seek to rectify because it may have important implications for decision making47
. From an epidemiologic perspective, our findings reproduce those from smaller regional studies that blacks are more likely than non-Hispanic whites to prefer more intensive treatment near death13–18
. Despite our efforts to control for a broad array of demographic and sociocultural variables, these findings may reflect unmeasured confounding since our survey items are imperfect measures of the concepts that we sought to measure, such as experience and perceptions of providers and the health-care system. And, of course, our findings should not be interpreted as permission to generalize; end-of-life treatment decisions always should be customized to individual preferences and goals of care.