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Participation in Medical Decision Making: The Patients' Perspective
2007 27: 533 originally published online 14 September 2007 The online version of this article can be found at: can be found at:
Medical Decision Making
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Participation in Medical Decision Making: Liana Fraenkel, MD, MPH, Sarah McGraw, PhD Purpose. Variability in reports of patients’ preferences to participation may change over time, 2) decision making is participate in decision making may be due in part to a performed within an extended social context, 3) the deci- lack of understanding about how patients conceptualize sions patients report being involved in are often distinct their participation. The authors sought to learn more from those traditionally studied (choice of treatment or about how patients view their involvement in decisions screening strategies), 4) patient involvement in decision related to their health care. Methods. The authors con- making occurs in response to physicians’ recommenda- ducted individual interviews to allow patients to frame tions, and 5) patients make choices in the context of their the decision-making process from their own perspective.
specific illness perceptions. Conclusions. Participants in The constant comparative-method approach to analysis this study view their participation in decision making as was employed to ensure that the analysts defined the including ideas distinct from those traditionally discussed codes in a consistent manner. Results. Twenty-six persons by researchers. These findings suggest that the variability were interviewed. The main themes discussed by the par- in patient participation noted in previous studies may be ticipants reflecting how they viewed their involvement in due in part to limitations in study design. Key words: medical decision making are the following: 1) decision medical decision making; qualitative study; patient parti- making is often an ongoing process in which patient cipation. (Med Decis Making 2007;27:533–538) Patient participation in decision making fulfills supported by research with the currently available the ethical principle of patient autonomy and the legal requirement of informed consent. Studies Deber and others4 hypothesized, and subsequently published to date, however, have reported signifi- demonstrated, that variability in patients’ desire cant variability in how much patients want to parti- to participate in decision making is in part due to cipate in this process.1–7 For example, in a recent the failure of survey questions to adequately differ- large population-based survey, Levinson and others2 entiate between problem-solving tasks (i.e., determin- found that 52% of respondents preferred to leave the ing the correct diagnosis and delineating appropriate final decision up to their doctor. Moreover, Kiesler treatment choices) and decision-making tasks (i.e., and Auerbach6 found that the common belief that choosing a treatment or intervention from a rational matching patients’ preferred level of involvement set of options). In point of fact, in Levinson and the will lead to positive outcomes was not consistently study by Levinson and others, the vast majority ofpatients wanted to be offered choices, even thoughmany preferred to leave the final decision up to theirdoctor.2 This discrepancy suggests that the variabil- Received 12 June 2006 from the VA Connecticut Healthcare System ity in patients’ preferences to participate in decision and Yale University School of Medicine, New Haven, Connecticut (LF), making noted in recent studies7 may be in part due and the New England Research Institutes, Watertown, Massachusetts(SM). This study was partially funded by the Arthritis Foundation Clini- to limitations in the survey instruments used to cal Science Grant. Dr Fraenkel is supported by the K23 Award AR048826-01 A1. Revision accepted for publication 9 March 2007.
Patient and physician beliefs differ in many res- Address correspondence to Liana Fraenkel, MD, MPH, Yale University pects, including how they conceptualize illness, how School of Medicine, Section of Rheumatology, 300 Cedar Street, TAC they prioritize long-term outcomes, and how they Building, Room 525, P.O. Box 208031, New Haven, CT 06520-8031; rank available treatment options.8–12 Likewise, it is telephone: 203-932-5711 extension 5914; fax: 293-937-4932; e-mail: also possible that physicians and patients differ in how they conceptualize participation in decsion mak- ing. If this hypothesis is correct, current instruments may not accurately reflect patients’ preferences to par- included 14 open-ended questions on participants’ ticipate in decision making. Given this background, experiences with medical decision making (see the we performed a qualitative study to better understand appendix). Participants were first asked to think how patients view their involvement in decisions back to a time when an important decision had to be made about treatment of an illness or medical condi-tion and then specifically prompted as necessary to discuss their involvement or lack of involvement inthe decision-making process.
Each interview ran for up to 90 min and was conducted by the same PhD-level senior research A qualitative study was chosen as the best appro- scientist (SM), who has extensive experience in qua- ach to elicit patients’ descriptions of their own experi- litative research and interviews. All participants ences and their interpretations of these experiences gave informed consent, and the Yale University related to decision making in their own medical care.
Institutional Review Boards approved the protocol.
We wanted to allow patients to frame the decision- The interviews were audiotaped and transcribed by making process from their own perspective and to a professional transcription service. Demographic avoid imposing any assumptions about how the pro- data (age, race, education, marital and employment cess is defined. Individual face-to-face audiotaped status) were collected at the beginning of each inter- interviews were chosen over focus groups for this view using a self-administered questionnaire. All study because interviews allow for more in-depth questions offered a defined set of responses, except exploration of each respondent’s individual experi- ences and thoughts. By using extensive in-depthprobing, we hoped to uncover a broader and more detailed understanding of the patient perspective.
The constant comparative method of analysis was employed to ensure that the 2 coders defined and applied codes in a consistent manner across all tran-scripts. The analysts (SM and LF) independently Participants were drawn from a larger study read all of the transcripts and developed an initial examining patient treatment preferences for osteo- list of codes.15 We stopped interviewing patients porosis. The sampling frame for the larger parent when we noted that no new ideas were discussed study was men older than 65 years and postmeno- after 3 consecutive interviews. After all the inter- pausal women who had recently (within 2 weeks) views were conducted, codes were refined with sub- undergone bone densitometry from 6 centers in the headings on a 2nd reading of the transcripts and greater New Haven, Connecticut, area. The vast applied to specific sections of each transcript.16 majority of patients referred to these centers are QSRNUDIST (Sage Publications Software, Thou- women. Participants for this qualitative study were sand Oaks, CA) was used to identify and sort the drawn consecutively from the group of patients relevant text across the transcripts for each code.17 whose bone densitometry measures were too high to Sections were reread to identify patients’ concepts make them eligible to participate in the larger, par- related to their participation in decision making.
ent study. Other eligibility criteria included the abil- The demographic data were summarized using ity to speak and understand English.
descriptive statistics (SAS Software, version 8.0;SAS Institute, Cary, NC).
Using a semistructured discussion guide, the interviews followed a funnel structure, progressing from broader open-ended questions to more struc-tured questions with specific probes to clarify issues A total of 25 women and 1 man were interviewed as needed.13 Opening with broader questions helps between April 2004 and July 2005. The mean age of to elicit concepts or topics of greatest salience to the participants was 61 years (range = 49–76). All the participants, an important feature of qualitative were Caucasian, 69% were married, 50% had a as opposed to structured interviews.14 The guide graduate degree, and 23% were retired.
534 • MEDICAL DECISION MAKING/SEP–OCT 2007 part of, a larger social unit. For example, someviewed themselves as supporting family members: The main themes that arose during the interviews, related to how participants conceptualize their parti- My sister and I have been instrumental in helping both cipation in medical decision making, noted that parents make decisions when it was necessary in their decision making 1) is often an ongoing process, 2) involves an extended social context, 3) includes I wasn’t a patient’s annoying spouse. I was a member decisions distinct from those traditionally studied, of the team taking care of him, is what I felt like.
4) occurs in response to physicians’ recommenda- tions, and 5) occurs in the context of patients’ illnessperceptions.
Others highlighted the need for someone to assist An ongoing process. Some patients described their involvement in the decision-making process as onethat occurred over time. For example, one respon- They really need somebody to be there to advocate for them . . . if you don’t really know anything about thesystem or how things go . . . if you’re just like, ‘‘I’m here; Sometimes a patient might say, well, I want to do a lit- take care of me,’’ you could get seriously screwed.
tle bit more research, or maybe I want to consult with Well if I had questions . . . usually I brought my daughter Another respondent described a series of conversa- with me. Because you know when you go in there you tions she had with her doctor about which medicine are a little unnerved. You might not ask all the ques-tions . . . and what I don’t ask she will. (Interview 19) to take to lower her cholesterol. After beginningwith one drug, she reviewed the formulary of herinsurance company to find the cheapest medicine One participant noted that including others in and then requested that her doctor change her medi- high-stake decisions benefits both patients as well cine. She then continued to evaluate the tradeoffs involved in this treatment decision, as illustrated bythe following quote: I think especially if you’re doing it by yourself that theburden is extreme. When you’re in a situation you’re Once I started taking it, I started questioning. You know, going to make a decision totally on your own without reading up on it and finding out. But it can cause liver any influence from anyone else . . . the decision you damage and that frightened me. I asked him to explain . . . what is the risk-benefit ratio here? (Interview 2) Includes decisions distinct from those traditionally studied. Patients interviewed in this study chose to usually related to cancer treatment, as including mul- discuss their participation in decisions related to tiple decisions over time related to diverse domains, choice of physicians and whether to accept physi- including attitudes toward screening or follow-up cians’ recommendations more often than the choice as well as curative and palliative treatment. For some, their preferred role in the decision-making pro-cess changed over time. For example, one woman [He] felt that he would do better switching [medical] described how a friend had participated actively in groups, and there was a lot of anxiety about doing that, many decisions related to her breast cancer until she because he’s not a person who does that easily . . . but in no longer felt strong enough to contribute: the end we did. It was a difficult decision. (Interview 10) I had to make a medical decision. Leave the doctor I But when she got there she was just kind of exhausted had gone to for 5 years and go to somebody new. (Inter- from making decisions and really worried and really just wanted people to tell her what to do. (Interview 10) The main decision I kept making was that I wasn’t get- Involves an extended social context. Some partici- ting anywhere at this particular station. You move on to pants in this study viewed active patient participa- another guy . . . hoping that someone would be of help.
tion in decision making as occurring within, or as Participants also described making decisions to Others felt that their physicians’ recommendation both acquire and reject health services against their stipulated the decision and consequently limited physicians’ advice. Decisions against physicians’ He feels what he says should be done. If you have anyobjections, you can talk about them, but his word is But I made the decision that I wanted to go have a stress test anyway because I just think that’s the right thing to Sometime he doesn’t say a word when you ask things . . . so you know he’s not going to change. You I think I’m going to call and get an ultrasound, just for know he just came out of the Connecticut Magazine as my peace of mind, and when I went there, they weren’t one of the 10 best doctors, so he knows what he’s talk- going to pay for it because my doctor didn’t feel it was necessary so I paid out of pocket. (Interview 11) Occurs in the context of patients’ illness percep- In contrast, decisions to reject physicians’ recom- tions. In this study, participants highlighted the fact mendations centered on prescription drugs: that information and/or recommendations are inter-preted based on each patient’s individual illness I made the decision not to do Lipitor, even though my cholesterol is 230. The diet and the treadmill and bar-bells and that’s as good as it’s going to get. (Interview 15) If somebody comes in and says you have to do this and And I did send away for the pills. I did order them. I got you just nod and say ok, and go home and don’t do any them home, and I looked at them and I go, I’m not tak- of it. But . . . if it makes sense to me, then I’ll do it. (Inter- [I filled the prescription] about 2 weeks ago, and I still The conclusion I came to was that you’re not getting at have it. I don’t forget my other pills. It probably is more the cause of the carpal tunnel if you go for surgery.
When this woman suggested that the problem was com-ing from tightening my shoulder, it made sense to me, In an example of a decision manifested in a non- and that’s what I started working on, and I did not goback to the orthopedist. (Interview 9) action, one woman described that she was told thatshe had osteopenia and should ‘‘take some kind of Others felt that individual patient health beliefs were so important that they should be not onlyacknowledged by the physician but also concordant I never called the doctor back. I mean, I know I should.
with the physician’s personal views. For example, It’s only been about a month, I think, but I don’t want togo on this medication. (Interview 20) I’m not a good medicine taker or pill taker. We think Occurs in response to physicians’ recommendations.
alike and that’s very important. (Interview 1) In this study, participants uniformly responded that I think they have to have a similar belief system or I they highly valued their physicians’ recommenda- don’t think the patient is going to trust the doctor, and tions. Some participants viewed the physicians’ the doctor can’t possibly believe that the patient is going recommendations as an important piece of informa- to follow through with the treatment. (Interview 22) tion. In these instances, the physician was viewedas a consultant: I think the physician’s recommendation is presented toyou, and then you have to decide whether you want it or In this qualitative study, patients described their not and how much you agree with him. (Interview 12) participation in decision making using several con-cepts that differ from those usually included in sur- The doctor lays out the risks and benefits, and you take all of that information and put it together with what is participate in decisions related to their health care.
For example, researchers often query patients on He [the physician] suggests and I make the decision.
their preference to participate in a particular deci- sion at a discrete point in time.6,7,18,19 However, in 536 • MEDICAL DECISION MAKING/SEP–OCT 2007 this study, patients frequently described their parti- attach to each of the factors discussed. There are sev- cipation in decision making as an ongoing process.
eral additional limitations of this study. We did not In fact, the highly educated patients’ description of include personal logbooks, observation methods, how they view their role (i.e., to gather information official reports, or focus groups to corroborate our over time and to weigh the consequences of each results. Participants were enrolled consecutively, alternative) is reflective of what experts advocate to and we did not purposely look for deviant cases. Our promote high-quality decision making.20 Patients in sample was composed primarily of Caucasian, well- this study also raised the important point that pre- educated, postmenopausal women, which limits the ference for participation may change over time. This generalizability of our results. Inclusion of a more issue highlights the limitations of surveying patients diverse sample might yield even more discrepancies on a single occasion but perhaps more importantly between the domains considered by patients to indicates that added support may be required to reflect active participation and those covered in stu- enable patients to participate in difficult decisions dies using currently available instruments.
In summary, patients in this study viewed patient Studies examining patient participation in deci- participation in decision making as including con- sion making have usually focused on choice of treat- cepts distinct from those traditionally evaluated.
ment or screening strategies.6,7 In this study, in These findings suggest that underestimation of which participants were given the opportunity to patients’ desire to participate in medical decision discuss 1 or more decisions of their choice, those making may be due in part to inadequate under- discussed most frequently were related to choice of standing of how patients conceptualize participa- physician and whether to accept physicians’ recom- tion and consequent limitations in survey design.
mendations, 2 situations in which patients clearly Based on the content of the interviews conducted, recognize the importance of their input. This find- future studies examining patients’ preferred role in ing calls attention to the importance of ensuring that decision making should consider the following: patients appreciate the importance of their contribu-tion before querying them on their preferred role 1. allowing for opportunities to reevaluate decisions to participate in a specified decision. In addition, over time in response to acquisition of new investigators have generally queried patients on their preferred level of participation as indivi- 2. ascertaining preferences from the appropriate social duals.6,7 Notably, patients in this study frequently viewed their participation in decision making as 3. ensuring that patients understand the value of their occurring within a larger social unit, thereby empha- input for the decision under consideration, sizing the need to include all relevant stakeholders 4. including a reference to the physician’s recommen- when surveying patients about their desire to partici- 5. ensuring that patients’ understanding of the expected pate in important decisions affecting their health course of their disease is based on accurate informa- tion so they may evaluate treatment alternatives.
The differences in how patients conceptualize their participation in medical decision making com-pared with how health professionals conceptualize and study this process are consistent with differences in how patients and health care professionals under-stand and address medical symptoms.21 Althoughphysicians focus on a disease model that centers on 1. To begin, I am going to ask you to think back to a symptoms, testing, diagnosis, and treatment, patients’ time when an important decision had to be made illness perceptions center on how they interpret and about your treatment for an illness or a medical cope with the effect of their symptoms on their qual- ity of life. The concepts identified in this study are 2. Thinking back about this decision and other deci- grounded in the patients’ descriptions of their own sions related to your health care, to what extent doyou feel that you have shared in the decision mak- experiences and illness perceptions.
Although we feel that a qualitative study was the 3. Thinking back over times when you faced a decision best approach to meet our objective, this approach about medical care, was there ever a time when you does preclude quantitative analyses of the data and wished you had a bigger role in the decision-making assessment of the relative importance that patients process? Why did you wish you had a large role? 4. Now, thinking back about times when you faced a 5. Azoulay E, Pochard F, Chevret S, et al. Half the family mem- decision about medical care, was there ever an bers of intensive care unit patients do not want to share in the instance when you wished you were asked to make decision-making process: a study in 78 French intensive care fewer decisions or have less of a role in the decision- units. Crit Care Med. 2004;32:1832–8.
6. Kiesler DJ, Auerbach SM. Optimal matches of patient prefer- 5. Have you ever disagreed with your doctor about a ences for information, decision-making and interpersonal beha- treatment plan that was suggested to you? How did vior: evidence, models and interventions. Patient Educ Couns 6. Have you ever been told by a doctor to try a treat- 7. Say RE, Murtagh M, Thomson R. Patients’ preference for ment option that was impractical for you? How did involvement in medical decision making: a narrative review.
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7. In a situation where there are choices about treat- 8. Devereaux PJ, Anderson DR, Gardner MJ, et al. Differences ment, how important is the physician’s recommen- between perspectives of physicians and patients on anticoagula- tion in patients with atrial fibrillation: observational study. BMJ.
8. How important is it for the patient and doctor to share a similar outlook, such as values about health 9. Elstein AS, Chapman GB, Knight SJ. Patients’ values and clini- cal substituted judgments: the case of localized prostate cancer.
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