Patient-centeredness aims to satisfy individual patients’ needs and wishes for medical care.1 Key to that effort is honoring patients’ preferences for involvement in treatment decision-making. The traditional decision-making approach, by which the doctor decides treatment for a passive patient, has recently had to make room for new approaches offering the patient active decision-making roles.2–10 One new approach gives the patient the dominant say in decisions11; another, called “shared decision-making,” involves an exchange of ideas between doctor and patient, subsequent negotiation, and an equal say for each in final decisions.1,4,5,8,12–15 Some patients still prefer the passive approach,16,17 and patient-centeredness for them requires honoring that preference. But many other patients prefer one of the new active approaches.4,6,11,17–33 By aspiring to patient-centeredness, then, doctors must now try to identify and accommodate each patient’s current preferences and perceptions about decision-making involvement. We define current preferences as the patient’s “immediate wishes about participation in treatment decisions,” and current perceptions as the patient’s “immediate views about his or her actual participation in those decisions.” Each patient’s satisfaction with care depends in part on matching those preferences and perceptions.32
Ideally, through dialogue, doctors elicit each patient’s views about decision-making involvement and structure it accordingly.2,18 But doctors sometimes do not know their inpatients well beforehand, and a serious illness may make impractical or inconclusive on-the-spot inquiries about such involvement. Doctors may then need indirect indicators of patients’ current preferences and perceptions.7
Patient demographics offer ready candidates for such indicators, but supporting research is sketchy. Almost no research has explored demographic indicators of patients’ perceptions about decision-making involvement. And prior research into demographic indicators of patients’ preferences about such involvement has serious shortcomings. Nearly all of that research involves outpatients exclusively (even though outpatients’ preferences about decision-making involvement may differ dramatically from inpatients’). And much of it is limited to European-descended, English-speaking patients with a single disease (typically prostate or breast cancer) in the United States, Canada, Australia, or Britain. Furthermore, age and education—the patient demographics associated most often with such preferences2,3,12,18,19,21,25,30,34–36—show only sporadic links to the preferences and, when they do, they explain only 2%–25% of the variance.2,3,18,21,29,34,36
Yet a prior study by our group suggested that ethnic group and sex indicate inpatients’ current views about advance care planning.37,38 We thought the same variables might also indicate inpatients’ current preferences and perceptions about decision-making involvement. A strong conceptual framework, grounded in culture, supports this idea. Culture is the values, beliefs, and behaviors a cohesive human group shares and uses to interpret experience. Although any person belongs to many cultural groups simultaneously, only a few cultures meaningfully address the person’s most poignant life experiences, including serious illness and its treatment. Such dominant cultures, which include the cultures of ethnic group and sex, exert a huge influence over the person’s basic worldview.
We, therefore, reanalyzed our data from that study, looking for patients’ current preferences and perceptions about decision-making involvement. This analysis, which we report here, yielded important new hypotheses relating such preferences and perceptions to ethnic group and sex.
The original study involved interviewing ethnically diverse inpatients (but not their doctors) on multiple medical care topics, including current preferences and perceptions about involvement in treatment decision-making. Interviewees included Mexican Americans (MAs), Euro-Americans (EAs), and African Americans (AAs) admitted to either of 2 San Antonio, Texas, general hospitals—1 private, 1 public—over a 9-month period. Interviewees had to be 50 to 79 years old and to have potentially life-threatening admitting diagnoses.37,38 Purposive sampling provided similar numbers of interviewees by ethnic group and sex. A validated algorithm determined ethnic-group classifications based on the concordance of father’s surname and mother’s maiden name (Spanish vs. non-Spanish) and of parents’ birthplaces (Mexico, the United States, or elsewhere); the grandparents’ national origin (if necessary); and the patient’s self-declared ethnic identity.39 We identified MAs by concordant parental Spanish surnames and birthplaces inside Mexico and grandparental origins in Mexico; we identified EAs and AAs by self-declared ethnic identities considering parental non-Spanish surnames and birthplaces outside Mexico. All interviewees gave informed consent.
Two bilingual women—1 MA and 1 EA not specifically matched to patients’ ethnic groups—conducted the interviews. Interviews typically occurred 3 days after hospitalization, took place at the bedside, lasted 90 minutes, and were audiotaped. Patients interviewed in Spanish or English as they preferred.
Set questions, pretested for validity, introduced each interview topic. We cast these open-response topic questions broadly to encourage respondents to answer freely with their own ideas. For the topics covered here, interviewers first asked, “What has happened to you in the hospital?” Respondents answered by mentioning in-hospital treatments often and prehospital treatments occasionally. From these answers, we inferred respondents’ current perceptions about who had made treatment decisions for them. Focused on decision-making involvement, we did not press respondents to describe specific treatments or their outcomes in detail. Interviewers then asked, “If you and your doctor disagree about treatment, who should have the final say and why?” Answers to that question gave us patients’ current preferences about who should make treatment decisions for them. We asked about doctor-patient disagreements, believing they reveal patients’ clearest decision-making preferences from among doctor, patient, or both doctor and patient. Although this question appears hypothetical, it prompted many descriptions of real disagreements patients had had with doctors. Interviewers clarified any answers, using nondirective probes such as “Tell me more.” Bilingual typists then transcribed the audiotapes, translating any Spanish into English. Two bilingual supervisors independently verified the accuracy of the translations.
Trained coders varying by ethnic group, sex, and professional background content-analyzed the transcripts. The analysis followed 4 steps, all involving independent, blinded readings by ≥2 coders. First, irrelevant quotes were deleted. Then the remaining quotes, taken verbatim, were aggregated under the relevant topic question. Next, those quotes were classified under 33 narrow codes derived from patients’ own words. Examples include “Patient should have control because it’s the patient’s body” or “Patient doesn’t have rights in the hospital.” Coders compared their codings one-by-one, resolving nearly all disagreements by consensus. Only 14 codings required third-party adjudication. Three authors (H.S.P., J.D.C., and H.P.H.), only 1 of whom participated in the day-to-day content analysis (H.S.P.), periodically reviewed codings for their fidelity to patients’ original quotes. Finally, the codings and the quotations associated with them were reaggregated under 4 major themes: decision-making by the doctor alone, by the patient alone, by the doctor and the patient jointly, and by the doctor alone and the patient alone on separate occasions. The first 2 major themes are self-explanatory. The third denotes shared decision-making involving negotiation between doctor and patient as equals. And the fourth denotes independent decisions by the doctor alone and the patient alone at different times.
We present our results in 2 ways. Direct quotes illustrate the grounding of the 4 major themes in patients’ original comments. And percentages show the prevalence of those themes within the ethnic-group and sex samples. We do not present statistical comparisons because we felt uncomfortable applying statistics to the nonrandom purposive samples. Nonetheless, readers may directly compare the percentages in the tables and judge the significance of differences for themselves.
Sixty-five patients agreed to interviews. Five did not finish their interviews, and 2 more could not be classified into distinct ethnic groups. The other 58 patients constituted our analysis sample. They included 26 MAs (14 men, 12 women), 18 EAs (7 men, 11 women), and 14 AAs (7 men, 7 women). The ethnic groups were similar in age but differed by education, religion, and marital status (Table 1). Within each ethnic group, the sexes differed only by marital status. Most respondents had admitting diagnoses of congestive heart failure (19 patients); angina (17 patients), pneumonia (5 patients), or chronic obstructive lung disease (another 5 patients). The others had either acute myocardial infarction, arrhythmias, strokes, gastrointestinal bleeding, septicemia, or severe cellulitis. Respondents often cited treatment decisions about medications (21 patients), hospitalization (19 patients), life support (18 patients), or major surgery (11 patients) in describing their decision-making preferences or perceptions. Because preferences logically precede perceptions, we report preferences first.
All 58 respondents voiced current preferences about decision-making involvement. Thirty-one respondents preferred decision-making by both doctor and patient; 12, by the doctor alone; and 15, by the patient alone.
Respondents who preferred “decision-making by both doctor and patient” invoked either of 2 meanings. One was true shared decision-making, involving a free exchange of views and a joint decision negotiated by doctor and patient. Thirteen respondents invoked this meaning. One EA woman said, It “is a discussion of treatment (not) a directive of treatment. You will do such and such. I pick the doctor I feel comfortable with. If you’re comfortable with your doctor, you’re able to discuss things.” The other meaning was decision-making by the doctor alone and the patient alone on separate occasions. Eighteen respondents invoked that meaning. An MA man said, “I’ve refused (heart surgery) for a month because I have a lot of things to do on the outside. I talked with the doctor if he could give me medication, and he was going to think about it. (The doctors are having) a meeting today (about what to do).”
In contrast, respondents preferring either decision-making by the doctor alone or decision-making by the patient alone invoked the straightforward meanings of those preferences. An AA man, preferring decision-making by the doctor alone, said, “The doctors have to tell me what’s wrong and then they determine the treatment. It’s not what I want. It’s what they want. (They) have the final say.” And an MA woman, preferring decision-making by the patient alone, said, “(I)f I sign that (advance directive), it will be what I want (the doctors) to do. I decide for myself. It would be up to me (because I pay) the bills.”
Table 2 shows the prevalence of decision-making preferences by ethnic group and sex. No preferences had a majority by ethnic group, but 2 did so by sex. Most men in all three ethnic groups preferred decision-making by the doctor (either alone or with the patient). (Many EA men specifically preferred joint decision-making.) However, most women in all three ethnic groups preferred decision-making by the patient (either alone or with the doctor). Thus, only sex indicated current decision-making preferences.
We inferred current perceptions about treatment decision-making from 48 of the 58 respondents. No respondents perceived shared decision-making by doctor and patient together. Yet many respondents perceived decision-making by the doctor alone and the patient alone on separate occasions. One AA woman, citing prehospital treatment, said, “I’ve taken a lot of medicines that made me sicker. One gave me a stroke in this leg. I stopped (that medicine) right away. I was walking along and just fell. My whole leg gave away. I went back (to that clinic doctor) and told him I refused his medicine because he gave me a stroke.” The same woman, talking later about her eventual hospital discharge, said, “It’s up to the doctors whether they wants to care for me, (whether) I can stay in the hospital (anymore). It’s up to the doctors (when I go home).”
In contrast, some respondents perceived treatment decision-making only by the doctor alone. One MA man, admitted for a urinary tract obstruction, did so. He said, “I didn’t like the tube (the doctors) put into (my bladder) to drain that water out. It was painful. But the doctors said, ‘We’ve got to do it’ (and they did).” A few other respondents perceived decision-making only by the patient alone. An MA woman admitted for urgent anginal treatment, said, “The doctor explained I have 2 options: to go (into the artery) again and open it (up) with a balloon (or) a screwdriver, or (to do) a bypass. He’s going to leave it up to me (which procedure) to do.”
Table 3 shows the prevalence of decision-making perceptions by ethnic group and sex. Unlike the preferences, the perceptions yielded no simple pattern. Many respondents in all ethnic groups and sex subgroups (except AA men) perceived decision-making by the doctor alone and the patient alone on separate occasions. Yet the sex patterns for this perception differed within ethnic groups. For MAs roughly equal numbers of men and women had it, for EAs more men than women had it, and for AAs more women than men had it. Furthermore, some MA men and women—but no EAs or AAs—perceived decision-making by the patient alone, and for EAs no men but some women perceived decision-making by the doctor alone. Thus, sex and ethnic group together indicated decision-making perceptions.
Forty-eight respondents voiced both preferences and perceptions about treatment decision-making. Table 4 shows the matches and mismatches. Three sevenths of this group had matches, falling on the boldened, upward-sloping diagonal. These respondents included about two thirds of EAs but only about one third of MAs and AAs. Most matches in each ethnic group concerned decision-making by the doctor alone and the patient alone on separate occasions. The other four sevenths of the group had mismatches, falling off the diagonal. Three sevenths fell above the diagonal, indicating more doctor decision-making than respondents wanted. Most were women, including over half of MA and AA women. The other one seventh fell below the diagonal, indicating more patient decision-making than respondents wanted. Most were men, including over a quarter of MA men. Thus, ethnic group alone indicated preference-perception matches, but both ethnic group and sex indicated mismatches.
These results yield 4 basic hypotheses. First, senior inpatients perceive more doctor decision-making involvement than they prefer. Second, sex—not ethnic group—indicates patients’ current decision-making preferences. Men prefer doctor involvement (with or without the patient), whereas women prefer patient involvement (with or without the doctor). Third, ethnic group and sex together indicate patients’ current decision-making perceptions. Each ethnic group as a whole tends to perceive decision-making involvement by both the doctor alone and the patient alone on separate occasions. But within each ethnic group, the sexes differ: among MAs men and women roughly equally perceive such decision-making, among EAs more men than women do, and among AAs more women than men do. Fourth, ethnic group alone indicates preference-perception matches. Most EAs have matches; most MAs and AAs do not.
The reader, of course, must view these hypotheses in light of the study’s limitations and strengths. One possible limitation is the purposive sampling, a nonrandom strategy for recruiting participants efficiently according to preselected characteristics. Although the nonrandomness may limit statistical comparisons, exploratory studies like ours often use this sampling strategy to generate hypotheses for later statistical testing. Another possible limitation is the lack of data here on 2 related points. We did not follow-up with specific treatment decisions or their outcomes. We also did not ask the preferences and perceptions of either the doctors or other health professionals participating in the treatment decisions. Those points require future studies. Still another possible limitation is the potential confounding of ethnic group by religion, marital status, and education. No research exists to address this issue for patients’ decision-making perceptions. And to our knowledge, no research links patients’ decision-making preferences to religion,29 and only rare studies link them to particular marital states (and those states vary by the study).15,21,25,33,40,41 The most likely confounder is education, to which prior studies most often link such preferences. But those studies find the most educated participants prefer patient decision-making whereas our study finds the least educated participants, the MAs, do so. Thus, confounding of ethnic group by education for both decision-making perceptions and preferences remains open. Future studies should explore the possibility. And yet another possible limitation is some respondents’ sketchy, even ambiguous answers. No interview study totally avoids the resulting problem of interpretation. But here diverse coders reached common interpretations, often readily, for all but a few quotes.
Important strengths also characterize this study. One strength is the clinically important topic. As patient-centeredness increasingly governs clinical practice,1,4 doctors must address patients’ decision-making preferences and perceptions. Those preferences and perceptions strongly affect the satisfaction of both patients and doctors with care,13,30,32,42–45 and the reimbursement by insurance companies for it. Another strength is the data that fill noteworthy gaps concerning ethnic group, sex, and noncancerous diseases in decision-making research. Still another strength is the study’s open-response questions. Respondents need not have shoehorned their answers into fixed, preexisting categories but could answer freely with their own words and ideas. Prior research suggests that such open-response questions yield a broader range of answers, especially negative ones, than do fixed-response questions.46 Even more importantly, respondents’ words and ideas provided the groundwork for our analysis. And yet another strength is the rigorous, multistep content analysis that used blinded, independent readings by diverse coders to guard against interpretive bias.
Our study has broad conceptual implications beyond the specific preliminary hypotheses generated, and those implications deserve further comment. First, contrary to our initial expectations the cultures of ethnic group and sex may not form a neat hierarchy. Our prior analyses in this project depicted the culture of an ethnic group as a dominant, overarching culture containing the subordinate cultures of sex. But this new analysis depicts ethnic and sex cultures as equally strong, independent, and interactive. We now believe these cultures require study together for their possible interactions.
Second, the sexes here differ consistently in decision-making preferences regardless of ethnic group: men tend to prefer doctor involvement; women, patient involvement. This difference needs further explanation, and other authors provide some ideas. Men may want little responsibility for their health care, may be resigned (or relieved16,34) to have doctors make health care decisions for them,4,46 or may doubt that the health care system will honor their wishes if expressed.38 In contrast, women may want considerable responsibility for their health care,47 may have the assertiveness and self-confidence necessary to make health care decisions for themselves,19,27 and may trust the health care system to honor their wishes if expressed. These ideas require further exploration.
Third, our results suggest that decision-making involving doctor and patient may require an accommodation to circumstance. Recent literature trumpets true shared decision-making.1,4,5,8,12–15 But medical decisions vary widely in urgency, gravity, and complexity. True shared decision-making may suit only isolated, relatively infrequent, momentous, and nonemergent decisions about grand care strategies or major treatments. Examples include choosing radical resection, limited resection, or medical therapy for breast cancer6,26,35,40,44,48; active treatment or watchful waiting for prostate cancer6,16,33; palliative or aggressive care for advanced cancer;42 medical therapy or joint replacement for osteoarthritis10; and attempted resuscitation or not for cardiac arrest.24 But most everyday care (with its many, varied, commonplace decisions) may require more flexible, less cumbersome decision-making approaches. As respondent comments indicate here, decision-making by both the doctor alone and the patient alone on separate occasions may often fill that bill. The practical challenge for doctors is knowing when each decision-making approach—by the doctor alone, the patient alone, or the 2 together—is best.
Given the preliminary new hypotheses and conceptual implications of this study, we imagine 2 distinct paths for further research. One might use quantitative methods to test the accuracy of ethnic group and sex as indicators of patients’ current decision-making preferences and perceptions. That research should track both demographic variables simultaneously and look carefully for interactions.23,49 It should also recruit inpatients and outpatients alike, use various study sites, and control for age and education. The other path might use additional qualitative methods to explore lingering conceptual questions about decision-making attitudes. Why might men and women differ in their preferences and perceptions? Why might MAs perceive decision-making by patients alone, and EAs and AAs not? Why do preference-perception matches predominate among EAs and not among MAs and AAs, and how much do those matches affect patients’ satisfaction with care? And under what circumstances does true shared decision-making best suit practice?
Although these questions await further research, doctors might try tailoring major treatment decision-making to patient preferences and perceptions. Table 5, a summary of our findings, can help initiate patient-centered dialogues on the matter. For example, the doctor might approach patients by anticipating that men prefer the doctor to make decisions, and women prefer making decisions themselves. But, whenever possible, the dialogue should check the validity of these preference assumptions for each patient. Decision-making should always adapt to suit the particular patient.2,4,7,18,27 The doctor should also remember that all ethnic-sex groups except AA men tend to perceive that both the doctor alone and the patient alone make treatment decisions on separate occasions. Partnership building, then, may benefit from doctors’ explanations that, however the grand treatment decisions are made, both parties retain responsibility for making other, less momentous decisions.
Ethnic group and sex, of course, will never perform perfectly as indicators for patient decision-making preferences and perceptions. Such demographics should not be used to draw hasty, ill-informed, or rigid conclusions.3 Outliers always exist. Thus, demographics may be a useful place to start, but not to end, dialogues about patient-centered decision-making.1,19
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