Abstract Objectives Polypharmacy in the older population is increasing—and can be harmful. It can be safe to reduce or carefully cease medicines (deprescribing) but a collaborative approach between patient and doctor is required. This study explores decision-making about polypharmacy with older adults and their companions. Method Semi-structured interviews were conducted with 30 older people (aged 75+ years, taking multiple medicines) and 15 companions. Framework analysis was used to identify qualitative themes. Results Participants varied considerably in attitudes towards medicines, preferences for involvement in decision-making, and openness to deprescribing. Three types were identified. Type 1 held positive attitudes towards medicines, and preferred to leave decisions to their doctor. Type 2 voiced ambivalent attitudes towards medicines, preferred a proactive role, and were open to deprescribing. Type 3 were frail, perceived they lacked knowledge about medicines, and deferred most decisions to their doctor or companion. Discussion This study provides a novel typology to describe differences between older people who are happy to take multiple medicines, and those who are open to deprescribing. To enable shared decision-making, prescribers need to adapt their communication about polypharmacy based on their patients’ attitudes to medicines and preferences for involvement in decisions. Shared decision making, Polypharmacy, Communication Inappropriate polypharmacy increases the risk of adverse drug reactions and other negative outcomes (Fried et al., 2014), particularly for those who are frail and have multiple health conditions (Gnjidic et al., 2012; McLachlan & Pont, 2012; Scott & Le Couteur, 2015). In clinical trial settings, it has been shown that careful and supervised withdrawal (deprescribing) of unneeded or problematic medicines can be done safely and is of benefit (Gnjidic, Le Couteur, Kouladjian, & Hilmer, 2012; Page, Clifford, Potter, Schwartz, & Etherton-Beer, 2016; Potter, Flicker, Page, & Etherton-Beer, 2016). However, deprescribing in clinical practice can be challenging. The importance of involving the older patient in a collaborative approach to making informed decisions about their health is widely acknowledged (Jansen et al., 2016; Reeve, Low, & Hilmer, 2016; Scott et al., 2015). This process is often referred to as shared decision making (Stiggelbout et al., 2012). According to our shared decision making framework for deprescribing (Jansen et al., 2016), ideally this would mean that older people know what medicines they are taking and why; talk with their clinician about preferences, how they feel about medicines, and the potential harms and benefits; and participate in final decisions. However, the extent to which older people want to be involved in this dialogue can vary greatly (Holmes & Todd, 2017; Wrede-Sach et al., 2013). Older people’s involvement in medicine-related decisions depends on their health, knowledge, and information preferences; their relationship with their clinician; and their beliefs and attitudes towards medicines (Bastiaens, Van Royen, Pavlic, Raposo, & Baker, 2007; Belcher, Fried, Agostini, & Tinetti, 2006; Levinson, Kao, Kuby, & Thisted, 2005). Studies looking at older people’s attitudes towards stopping medicines has found that the majority are willing to deprescribe if their doctor deemed it appropriate (Garfinkel & Mangin, 2010; Reeve, Shakib, Hendrix, Roberts, & Wiese, 2013). Attitudes towards medicines, however, are not straightforward. An older person may hold mutually contradicting attitudes: for example, they may feel positive about their medications but also express a willingness to take fewer medicines (Bagge, Tordoff, Norris, & Heydon, 2013; Linsky, Simon, & Bokhour, 2015). Reeve and colleagues (2013) assessed willingness to deprescribe in older adults (n = 100, average 71 years) from a chronic disease clinic. In response to the statement: “If my doctor said it was possible I would be willing to stop one or more of my regular medicines”, 92% of respondents agreed. However, in that same study 78% believed all their medications were necessary, 71% would accept taking more medications for their health condition, and only 16% felt any of their medications were unnecessary. Similar contradictions between willingness to deprescribe and positive attitudes towards medicines were found in other studies (Galazzi et al., 2016; Qi et al., 2015; Reeve, Low, Shakib, & Hilmer, 2016). There is a complex interplay of many factors that lead an individual to accept polypharmacy or resist deprescribing (Jansen et al., 2016; Moen, Norrgård, Antonov, Nilsson, & Ring, 2010; Schuling, Gebben, Veehof, & Haaijer-Ruskamp, 2012). In this study, we explore the reasons behind this variation in patient preferences, attitudes, and experiences—to identify key factors that need to be considered by doctors and patients in the context of decision-making about polypharmacy. Methods Design This qualitative study involved face-to-face interviews with 30 older adults aged 75 years and above, and their 15 companions in New South Wales, Australia. Ethical Approval Ethical approval for the study was obtained through the Human Research Ethics Committee of the Sydney Local Health District (Protocol No. X14-0137). Data Collection A semi-structured interview schedule was developed in conjunction with a multidisciplinary research team, which included experts in geriatrics (V.N.), pharmacy (A.M., A.H., D.R.), epidemiology (L.I.), ethics (S.C.), and health psychology and shared decision making (J.J., K.M., C.B.); and a consumer representative (J.C.). During the interviews, participants were asked how they liked to make decisions about medications with their doctor using the Control Preference Scale (Degner, Sloan, & Venkatesh, 1997). Five statements were read to each participant and they indicated which statement best described their involvement preference. Participants’ reasoning behind their preference was then explored, with questions such as: “In general, how does taking these medications make you feel?” and “Can you think back to a discussion with your GP about your medications. What was that conversation like for you?” Basic demographic data were collected, including comorbidity using the Charlson comorbidity index (Charlson, Pompei, Ales, & MacKenzie, 1987) and activities of daily living (ADLs; Katz, 1983). Participants were asked to rate their general health and quality of life on a 5-point scale: excellent/very good/good/fair/poor. A total of 41 participants were recruited through general practitioners (GPs) and from a Geriatric Medicine Rehabilitation ward at a Sydney hospital, to ensure inclusion of frailer participants. Eleven people were unable to be interviewed because their health deteriorated. The interviews were conducted between September 2014 and November 2015, took place at patients’ homes, and lasted 20 to 84 minutes. Interviews were audio-recorded and transcribed verbatim, with any identifying details removed. Recruitment for the interviews continued until thematic saturation had been reached as indicated by data redundancy (Bowen, 2008). Participants were encouraged to have their companion present during the interview if this reflected their usual situation. The companions were interviewed alongside patients, with relationships being professional carer, partner, son/daughter, or relative. Interview questions were addressed to both the patient and companion. Analysis The study used a phenomenological methodology to understand the experiences and perspectives of older patients, with a Framework Analysis to organize the interview data and identify themes (Ritchie & Lewis, 2003), involving a five-step process. One researcher (K.W.) read through a subset of transcripts to identify salient themes. These themes, along with the interview schedule, formed the basis for the initial coding framework, which was discussed and reviewed by qualitative researchers (K.W., B.N., J.J., C.B., K.M.). Two researchers then independently reviewed another subset of transcripts, developed codes, and compared the data for similarities and differences in the data and coding (K.W., B.N.). Researchers then discussed and together established categories and overarching themes, and developed the database (K.W., B.N., J.J., K.M.). Two researchers split the transcripts and independently summarized the themes and supporting quotes from each transcript into the database with continuous discussion with other researchers (K.W., B.N.). At this point, the team observed three distinct types of participant. To test this typology, a new subset of participants was selected, and two researchers independently categorized these participants into types; this showed that the typology was sound and could be reliably applied to the data (K.W., B.N.). When all data were coded and summarized, the database was examined within and across themes and participants to identify further relationships. Rigor was addressed through detailed documentation of the analysis process; repeat coding of transcripts; constant comparison of data with continuous discussion of themes; and follow-up telephone interviews for respondent validation for participants recruited through GPs (n = 19). Results Characteristics of the 30 participants are shown in Table 1. Their mean age was 83 years. Most participants (93%) were taking five or more different prescribed medicines, with 30% taking 10 or more regular medicines on a daily basis. Participants ranged from Excellent to poor health as shown by the spread of Charlson comorbidity index scores, activities of daily living (0–8), number of medications, self-rated health, and self-rated quality of life. More than 60% of participants lived with a companion, most commonly their partner. The majority reported they had at some point had their medicines reviewed by their doctor, specialist, or pharmacist (21/30). All participants reported taking medications for a long time; and most described having good rapport with their doctor. Table 1. Participant Characteristics Characteristic No. of older adults (n = 30) Age (years) 75–84 21 ≥85 9 Sex Male 11 Female 19 Education High school or below 20 Technical diploma 3 University degree 7 Number of Medicinesa <4 2 5–9 19 >10 9 Medication management Self-managed 20 Dose administration aid 10 Living status Alone 11 Partner 15 Other companion 4 Charlson Comorbidity Indexb,c 0 5 1–2 13 3–4 8 ≥5 3 Activities of daily living (ADLs) No impairments for ADLs 6 1 or more impairments for ADLs 24 Self-assessed general health Excellent 3 Very good 6 Good 11 Fair 5 Poor 5 Self-assessed quality of life Excellent 3 Very good 13 Good 8 Fair 5 Poor 1 Control Preferences Scale Patient involved (a,b,c)d 9 Physician directed (d,e)e 21 Recruited from Hospital 10 GP 20 Characteristic No. of older adults (n = 30) Age (years) 75–84 21 ≥85 9 Sex Male 11 Female 19 Education High school or below 20 Technical diploma 3 University degree 7 Number of Medicinesa <4 2 5–9 19 >10 9 Medication management Self-managed 20 Dose administration aid 10 Living status Alone 11 Partner 15 Other companion 4 Charlson Comorbidity Indexb,c 0 5 1–2 13 3–4 8 ≥5 3 Activities of daily living (ADLs) No impairments for ADLs 6 1 or more impairments for ADLs 24 Self-assessed general health Excellent 3 Very good 6 Good 11 Fair 5 Poor 5 Self-assessed quality of life Excellent 3 Very good 13 Good 8 Fair 5 Poor 1 Control Preferences Scale Patient involved (a,b,c)d 9 Physician directed (d,e)e 21 Recruited from Hospital 10 GP 20 aAs indicated by the patient’s Expression of Interest Form and confirmed during the interview. This may be underestimated due to complementary medicines and supplements/vitamins not listed on all patients’ forms. bComorbidity measure which predicts the 10-year mortality for patients. 0 = none, 1–2 = mild, 3–4 = moderate, and 5 = severe. cMissing one patient’s Charlson Comorbidity Index (n = 29). dPatient involved responses: a) I prefer to make the decision about which medication I will receive, b) I prefer to make the final decision about my medication after seriously considering my doctor’s opinion, and c) I prefer that my doctor and I share responsibility for deciding which medication is best for me. ePhysician-directed responses: d) I prefer that my doctor makes the final decision about which medication will be used, but seriously considers my opinion and e) I prefer to leave all decisions regarding medication to my doctor. View Large Table 1. Participant Characteristics Characteristic No. of older adults (n = 30) Age (years) 75–84 21 ≥85 9 Sex Male 11 Female 19 Education High school or below 20 Technical diploma 3 University degree 7 Number of Medicinesa <4 2 5–9 19 >10 9 Medication management Self-managed 20 Dose administration aid 10 Living status Alone 11 Partner 15 Other companion 4 Charlson Comorbidity Indexb,c 0 5 1–2 13 3–4 8 ≥5 3 Activities of daily living (ADLs) No impairments for ADLs 6 1 or more impairments for ADLs 24 Self-assessed general health Excellent 3 Very good 6 Good 11 Fair 5 Poor 5 Self-assessed quality of life Excellent 3 Very good 13 Good 8 Fair 5 Poor 1 Control Preferences Scale Patient involved (a,b,c)d 9 Physician directed (d,e)e 21 Recruited from Hospital 10 GP 20 Characteristic No. of older adults (n = 30) Age (years) 75–84 21 ≥85 9 Sex Male 11 Female 19 Education High school or below 20 Technical diploma 3 University degree 7 Number of Medicinesa <4 2 5–9 19 >10 9 Medication management Self-managed 20 Dose administration aid 10 Living status Alone 11 Partner 15 Other companion 4 Charlson Comorbidity Indexb,c 0 5 1–2 13 3–4 8 ≥5 3 Activities of daily living (ADLs) No impairments for ADLs 6 1 or more impairments for ADLs 24 Self-assessed general health Excellent 3 Very good 6 Good 11 Fair 5 Poor 5 Self-assessed quality of life Excellent 3 Very good 13 Good 8 Fair 5 Poor 1 Control Preferences Scale Patient involved (a,b,c)d 9 Physician directed (d,e)e 21 Recruited from Hospital 10 GP 20 aAs indicated by the patient’s Expression of Interest Form and confirmed during the interview. This may be underestimated due to complementary medicines and supplements/vitamins not listed on all patients’ forms. bComorbidity measure which predicts the 10-year mortality for patients. 0 = none, 1–2 = mild, 3–4 = moderate, and 5 = severe. cMissing one patient’s Charlson Comorbidity Index (n = 29). dPatient involved responses: a) I prefer to make the decision about which medication I will receive, b) I prefer to make the final decision about my medication after seriously considering my doctor’s opinion, and c) I prefer that my doctor and I share responsibility for deciding which medication is best for me. ePhysician-directed responses: d) I prefer that my doctor makes the final decision about which medication will be used, but seriously considers my opinion and e) I prefer to leave all decisions regarding medication to my doctor. View Large Three key themes emerged: attitudes towards medicines, openness to deprescribing, and decision-making preferences. Participants varied considerably in relation to these themes, which led to the identification of three participant types based on observed patterns of the participant’s most common approach to polypharmacy and medicine decisions (Figure 1). These types were not always mutually exclusive as a few participants displayed traits that crossed over between groups. Within the categories, attitudes varied slightly depending on how concerned a participant was about a specific medication and/or health problem. This distinction seemed to be independent of the health status and function of the participants. Figure 1. View largeDownload slide Typology of participants. Figure 1. View largeDownload slide Typology of participants. Typology of Participants Type 1—Attached to Their Medicines Type 1 participants (n = 10) varied in terms of their living situation, health status, and function, with the majority rating their quality of life as good or above. Attached to and Highly Values Medicines Medicines were perceived as highly important, because they are essential for staying alive and contribute to overall wellbeing. “Anything I’ve got I realise is…good for me, you know. It’s furthering my life or my daily…wellbeing, so I wouldn’t stop anything” (ID6, female, age 89). This group viewed medicines as an inherent part of ageing: “It’s just part of life these days” (ID22, male, age 81); were accepting of polypharmacy; and appeared attached to their medicines. Negative Attitudes to Deprescribing This group had been on medications for many years and voiced concern or fear of their health condition changing or worsening if they stopped any medicines: “So, well, I keep going. I don’t know what will happen if I don’t take them” (ID12, male, age 76). This expectation of possible negative consequences of stopping a medication was more concerning to participants than any apprehension about taking unnecessary or harmful medication. Some participants focused on individual benefits when presented with limited evidence for certain medications for their age group: “There’s probably no need, to be on those medications perhaps, according to the research in my age group. But…there are probably factors that, if you looked at me individually…if I’ve been on cholesterol tablets for so long, then what’s going to happen if I suddenly given them up?” (ID1, female, age 82). This quote also illustrates a preference for maintaining the status quo and fear around the uncertainty of not knowing what will happen when medicines are stopped—a common theme in this group. This may explain why participants expressed some resistance to deprescribing. Participants could not recall an experience of deprescribing that was initiated by their doctor. Occasionally, temporary cessation of medications was noted, instigated by someone other than their doctor: “You’d get to [hospital] and she’d say, oh no, I don’t think you need to take that” (ID 8, male, age 97), but overall participants remarked on their preference for continuing medications. Experiences With Side Effects and Discussion About Medicines Harms Versus Benefits Some Type 1 participants reported major reactions to their medicines (e.g., life-threatening allergic reaction to penicillin); others noted minor side effects (e.g., leg cramps, coughing, “feeling dopey”), and some reported none at all. Only a few Type 1 participants recalled having discussions about the potential harms of medications with their doctor or pharmacist. Some participants felt their doctor was more likely to speak about the benefits; a few said they had asked their doctor or pharmacist for more information. Overall, participants in this group seemed to focus on benefits over harms of medicines, and fear the possible negative consequences of stopping a medicine—which seemed related to decision-making preferences. Reasons included that side effects were minor enough to accept, were isolated incidents, or were an acceptable barometer of appropriate dosage, or an indication to find a replacement medication: “I started coughing. All day. And I went to my GP and he said, oh yes, well we better change that. So he took that away and…gave me a different [one]” (ID12, male, age 76). “I take a lot of stuff, I know, but…I suppose some of it I could drop, but I don’t think any of it’s harmful. I think most of it’s helpful” (ID3, female, age 79). High Trust in Doctor for Decision-Making About Medicines Overall, this group indicated that they completely trusted their doctor to make all decisions or were strongly guided by them. These participants often expressed the sentiment that their doctor is the expert who knows best. The reasons participants gave for this were trust, a long relationship, and a belief that their doctor is aware of their preferences. “Well, um, he knows best. He knows my condition. I’ve been with him for 20 odd years. So he knows me inside and out sort of thing” (ID21, female, age 80). Although there was one participant who noted: “It’s very hard for an 82 year old person to argue with doctors. They um can be very overbearing some GPs you know.” (ID7, female, age 80). Type 2—Would Consider Deprescribing Most Type 2 participants (n = 14) rated their quality of life from fair to excellent and reported higher self-rated health than other groups. Ambivalent Towards Medicines These participants discussed both positive and negative attitudes towards their medicines that could be internally contradictory. Participants valued their medicines because they are a necessary part of life and most people they know are taking them. Medicines also “work” by keeping them alive, reducing symptoms such as pain, and improving quality of life. Participants also noted the negative aspects, including experiencing side effects, the possible drug interactions, the burden, and inconvenience of taking multiple medicines, and that some appear not to be working. They also did not like the idea of medicines or the reliance people have on them: “I don’t like it. I would prefer it if I didn’t have to” (ID14, female, age 78). Some participants preferred to be on fewer medications, but still believed they needed their current medicines. They gave two reasons for this: trusting their doctor: “I have complete faith in her and I would never go against if she said something didn’t suit me” (ID6, female, age 89); and comparison to other people on more medicines who were worse off, so they should not complain: “But I’m not the only one. Other people take more than me.” (ID5, female, age 98). Willing to Consider Deprescribing—Informed and Aware of Options Even though attitudes were generally positive towards medicines, they could also be negative under certain circumstances. In these situations, participants reported being open to deprescribing and discussed personal experiences with stopping a medication: “I wasn’t happy taking them at all … I couldn’t function at all … not properly. So I did. I stopped them” (ID1, female, age 82), “I thought this is, this is ridiculous. How can they do me any good, you know? I thought there’s just so many tablets, they’ve got to surely go against each other” (ID19, female, age 82). This group may be more open to deprescribing because they were more inclined to weigh up the benefits of their medicines against the potential for harm, and reported discussing this with their doctor and pharmacist. Proactive Patient—Preference for Shared Decision Making About Medicines Type 2 participants described discussions with their doctor as an exchange and voiced their wish to be informed about their medicines. Some participants said they preferred to share responsibility and decisions with their doctor; others preferred their doctor to make the final decision after considering the patients’ opinion. Several participants suggested they made decisions autonomously without their doctor’s involvement. Some participants stopped taking medications without telling their doctor: “No, I don’t tell her because she’d say take it” (ID5, female, age 98); or told their doctor afterwards: “So I took myself off it. I’ve told doctor about it. I’m taking myself off it, and she said, we’ll see how you go” (ID15, female, age 76). Participants from this group seemed comfortable initiating discussions with their doctor about their medicines: “But if I have to take something that makes me feel bloody terrible … I haven’t yet, but obviously I’d say something. And we’d come to some decision” (ID13, male, age 82). Several participants mentioned the idea of the doctor as the medical expert, knowing more about prescribing and evidence; however, they also expressed a view that they had the best understanding of themselves and therefore could contribute valuable personal knowledge to discussions: “I think they know better. I know better how I feel with it. But they probably know what better to … to prescribe for me” (ID14, female, age 78). Experiences With Side Effects and Discussions About Medicines Harms Versus Benefits Participants seemed to value information about the benefits and harms of medicines, and some commented they would independently seek information, if not provided by their doctor or pharmacist. A few participants mentioned that their doctor discussed both benefits and harms, but, overall, participants reported receiving patchy information about this: “Oh, they probably mentioned the benefits” (ID13, male, age 82); “They don’t usually tell you the harms” (ID15, female, age 76). Some participants assumed that their doctor would relay information about the possible harms of a medicine if there were any. Unique to this group, several participants mentioned they were proactive in gathering information about their medicines, reading the medicine information leaflet or finding out about side effects of medicines on their own: “He’s a bit lax on that, actually … he doesn’t usually say much about the side effects. It’s on the packet of course…and I just take notice of that” (ID26, male, age 84). About half of Type 2 participants understood the reason for their medicines, including whether they were for illness prevention or symptom relief: “Both I suppose. To help me, well…you can’t feel your cholesterol or your blood pressure really. So … they were pills I suppose in order to keep me healthy … probably stop me having a stroke…or a heart attack” (ID1, female, age 82); “Panadol Osteo,[paracetamol/acetaminophen] well they, I suppose they make me feel better because they suppress any bits of joint pain that I’ve got from my osteoarthritis” (ID25, female, age 85). In contrast, Types 1 and 3 did not appreciate this distinction. Type 2 participants reported experiences with side effects of their medicines, although most were less serious, such as bruising, thinning hair, and muscle cramps. Type 3—Defers to Others Participants (n = 6) from this group were frail: on the basis that the majority had three or more chronic conditions, were taking a large number of medicines, and reported their self-rated health as fair or poor: “Cos I’ve got all frail and shaky and … I’m on the way out [laughs]” (ID17, male, age 85); “I’m gradually falling apart bit by bit [laughs]” (ID24, male, age 90). In contrast to their self-rated health status, they classified their quality of life as good or above. Does Not Give Medicines Much Thought Type 3 participants did not seem to have a strong opinion in terms of the role medicines played in their lives. Participants said they took medicines because they were told to by their doctor; they generally believed medicines to be beneficial. Some participants also said they wanted to be a good patient and saw compliance with prescribed medicines as part of this: “I feel I’m doing the right thing by the doctor” (ID16, male, age 77). Open to Deprescribing if Recommended by Their Doctor Type 3 participants seemed to be open to deprescribing not primarily because they thought it would be beneficial, but if their doctor wanted to stop medicines: “Well, he’s the one that makes the decision that he thinks it’s time that I came off this…he feels that that’s not doing the, the right job” (ID24, male, age 90). Prefers to Defer Decision About Medicines to Doctor or Companion Most of the participants in this third group were not very aware of the decisions being made about their medicines: “Oh, I don’t make any decision. It’s up to the doc … my local GP. I rely on him to do all that for me” (ID17, male, age 85). This reliance seemed to be because of complete trust in their doctor’s judgment; satisfaction with their health management; poor health; and a perceived lack of knowledge or awareness of their medicines. They often relied on their companion for medicine management and/or used Dose Administration Aids. “Gee whizz. They’re not…segregated. They’re all made up in a Webster pack for me. So, I don’t know which one does the most beneficial of the whole lot” (ID24, male, age 90). Several participants in this group mentioned they had limited knowledge about their medicines, which seemed to prevent them from discussing their medications with their doctor or being involved in decisions. Participants indicated they did not feel equipped to participate meaningfully in these discussions: “I have no basis from where to converse about it because I have no knowledge…absolutely no knowledge about them” (ID2, female, age 84). Participants expressed that they were happy with this situation, but there were some instances of a participant raising concern about side effects or refusing to change medication. Experiences With Side Effects and Discussions About Medicines Harms Versus Benefits None of the participants could recall a discussion with their doctor or pharmacist about potential harms or benefits of their medicines. Although participants assumed their medicines did not have potential harms otherwise their doctor would have mentioned it: “It doesn’t have any side effect. I suppose if I had any side effect most probably she would explain … So things obviously are all normal. So you just accept that as it is” (ID4, female, age 91). One participant had experienced a side effect from his statins but his doctor had not mentioned this possibility beforehand: “He never said there’s likely to be a reaction to the statins. Er, we had to raise that with him” (ID16, male, age 77). Views and Characteristics of Companions Across Participant Types Type 1 participants had companions that were engaged in their medical care and daily living to varying degrees. The type of relationship seemed to be either an equal partnership—or that companions were more dominant and spoke on behalf of their patient companion. Companions with Type 2 participants had a collaborative approach and were involved in the sense that they supported their patient companions to be independent, aware of their medicines, and actively involved in their care. In contrast, it was apparent that the Type 3 companion/carer played an important role for these participants by providing assistance with managing their medications and other aspects of everyday life. Companions often had complete management of a participant’s medications, to the point where for some patients, their companion was the only one who knew which medicines they are taking and why. Companions voiced similar views as the participants towards medicines. Companions of Type 1 participants held positive attitudes towards medicines, and some expressed the view that taking medicines is a responsible act of a reasonable older adult: “I mean, if you’re responsible you take medications in order to prevent things going wrong, don’t you?” (ID16, male, age 77, partner). Some Type 2 companions leaned towards a more negative attitude towards medicines if their participant had ambivalent attitudes—and this may have been because they had more realistic expectations of medicines or had perceived negative effects in the participant: “And the higher the dose, the less mobile you are. And you become … in another world just like an ordinary drug addict” (ID11, female, age 76, partner). Overall, Type 3 companions perceived medicines as an important part of everyday life and seemed to prefer lesser involvement in decision-making about medicines. Discussion In this study, we identified three distinct types of participants, who varied considerably in their attitudes towards medicines and thoughts on deprescribing. Type 1 participants highly valued their medicines and did not question their importance even when experiencing side effects. They were resistant to deprescribing, preferring the status quo over the uncertainty around stopping medicines, and expressed a preference for their doctor to make decisions, after providing them with information about their medicines. Type 2 participants showed a mixed attitude towards their medicines and were aware of potential benefits and harms. This group was more knowledgeable, sourcing medicine information, and understanding the difference between preventive and symptomatic medicines. They were open to deprescribing, and preferred an active role in decisions. In their view, the doctor knows the evidence about medicines, while the patient contributes their experience and preferences. Type 3 participants seemed to be disinterested in their medicines and were more detached from medication management. This group was open to deprescribing if suggested by their doctor, because they were generally compliant with recommendations. They felt they lacked knowledge about their medicines and were unable to meaningfully contribute to decision-making. They deferred to their doctor or companion and were generally less engaged in their health care including medicines decisions. Our study goes someway to explain the contradictions between willingness to deprescribe and positive attitudes towards medicines found in earlier studies (Galazzi et al., 2016; Qi et al., 2015; Reeve et al., 2013, 2016), particularly by highlighting the variation in older people’s attitudes, and the factors that may influence this, including their knowledge about medicines. In general, wanting to be involved in decision-making and being knowledgeable about medicines were linked. Type 2 participants were most knowledgeable and most involved; Type 3 participants perceived lack of knowledge and were least involved; Type 1 participants valued their medicines strongly without fully understanding them. Similarly, previous research identified perceived lack of knowledge, low self-efficacy, low health-literacy, and fear as barriers to older people’s involvement in health decision-making (Barton et al., 2014; Belcher et al., 2006). Knowledge about medications is further complicated by limited discussions reported by most patients about the harms of medicines and when there were discussions there was more emphasis on the benefits. This is in line with literature suggesting that both clinicians and patients have inaccurate perceptions of potential benefits (overestimated) and harms (underestimated) which may act as a barrier to deprescribing (Hoffmann & Del Mar, 2015, 2017). Previous experiences with medical care are likely to have shaped older people’s expectations of their role and capabilities in decision-making (Say, Murtagh, & Thomson, 2006; Wrede-Sach et al., 2013). Preferences are not stable and can change over time and should therefore never simply be assumed; Type 1 or Type 3 participants, if provided with appropriate support, may come to value information about their medicines and desire a more active role in decision-making. Theoretical frameworks have been proposed that explore patient/clinician factors related to polypharmacy, medication adherence, and decision-making preferences (Marcum & Gellad, 2012; Wrede-Sach et al., 2013). These frameworks illustrate an array of factors that may come into play when people make decisions about their medicines (e.g., side effects, patient-provider trust, self-determination, and autonomy). We posit some of these factors (e.g., trust, experiences with side effects) are also important in the context of deprescribing medicines in older people. However, our study highlights the nuances of an individual older person’s decision-making preferences, where positive and negative attitudes to medicines can often coincide. Our findings also indicate that the barriers to deprescribe may be different for each individual older patient. Identifying and targeting those barriers is key for successful deprescribing (Michie, van Stralen, & West, 2011). One important component of medication decision-making for older people is being able to differentiate between medicines to control symptoms right now (e.g., asthma drugs), versus medicines that may prevent a future illness (e.g. statins). When asked directly, we found that many participants were unable to differentiate between these types. Making this distinction becomes more difficult—but also more important—with age. Older people are at highest risk of experiencing events such as heart attacks and strokes in the future, but are also less likely to benefit from preventive medicines due to lower life expectancy, multimorbidity, and drug interactions (Byatt, 2014; Hilmer, McLachlan, & Le Couteur, 2007; Kutner et al., 2015; Naganathan, 2013). Clinicians and patients face complex trade-offs and considerable uncertainty (Ailabouni, Nishtala, Mangin, & Tordoff, 2016) which can lead to an emphasis on preference-sensitive decisions (Jansen et al., 2017) that rely on patient involvement. Trust in clinicians was an important factor that influenced medication decisions. Patients often rate their doctors positively (Schoen et al., 2004) and typical elements of a quality patient–doctor relationship are longitudinal care and positive experience of consultations (Ridd, Shaw, Lewis, & Salisbury, 2009). In our study, almost all participants discussed having a long, trusting relationship with their doctor but this theme manifested differently for the participant groups. In Type 1 and Type 3 participants, trust was expressed similarly, as reliance on their clinicians’ expertise to make decisions about medicines and a preference for paternalism (Roter & Hall, 2006). However, Type 1 preferred being informed about their medicines, whereas Type 3 participants were not interested in medicines information, and just followed their doctors’ recommendations. With Type 2 participants, trust was used to foster a collaborative approach to decisions about medicines with a preference for mutuality (Roter & Hall, 2006). Other studies have highlighted trust in the clinician as an important factor for patient involvement in medicines decisions (Linsky et al., 2015; Palagyi, Keay, Harper, Potter, & Lindley, 2016; Wrede-Sach et al., 2013). Our study suggests that mobilizing trust within the patient–clinician-companion triad could maximize the benefits of medicines and minimize the harms. Trust as the basis of decision-making is particularly relevant for older people who may not have the capacity or interest to be involved and may be an alternative to informed decision-making for some (Kongsholm & Kappel, 2017). This study also raises the question of the degree to which we should expect people to conform to the imagined “ideal patient” in shared decision making—fully informed, rational and clear about their values, and willing to spend time discussing their medicines (Stiggelbout et al., 2012). However, patient autonomy is to respect a person’s preference to be less involved in decision-making and/or defer decisions to others if they wish to do so (Bynum, Barre, Reed, & Passow, 2014; Flynn & Smith, 2007). It’s important to recognize the varying roles of companions and how this relates to communication with the clinician and preferences for involvement in decisions (Laidsaar-Powell et al., 2013). Perhaps the minimum requirement for shared decision making in this context is establishing awareness of the option to be involved; discussing preferences over time, as they may change; and, if a person is interested in being involved, creating the circumstances for this. Several interview studies have shown clinicians are hesitant in raising the topic of deprescribing, as it might imply they are “giving up” on their patient or withdrawing care (Ailabouni et al., 2016; Geijteman et al., 2016; Nixon & Kousgaard, 2016). However, our study and others suggest that it is important that clinicians have these discussions as many patients are in principle open to deprescribing, in particular when the benefits are made clear (Geijteman et al., 2016, in the context of end of life care). The participant types identified in this study suggest that deprescribing should be tailored to older adults’ understanding of their medicines, their attitudes towards medicines and deprescribing, and their preferred participation in decision-making. Educating clinicians about the potential benefits and harms of medicines in older people, as well as training/guidance for deprescribing, is also important, as many patients will simply follow their doctors’ advice. For Type 1 participants, the main task is convincing the older person that medicines can do more harm than good: addressing emotions and values are likely to be just as important as providing information to achieve this. For Type 2, the challenge is ensuring access to good quality information and communicating about potential side effects, as well as providing opportunities to review medicines and reconsider decisions. For Type 3, the doctor has an important role in actively managing medicines (e.g., with help from a Dose Administration Aid) and identifying opportunities for deprescribing, as these patients will mostly follow recommendations without understanding the rationale. The strengths of this study include the heterogeneous sample of older adults living in the community varying in age, education and levels of comorbidities, ADLs, and polypharmacy. Participant perspectives may be influenced by the recruiting clinicians’ views on medications and deprescribing and the health care system they engage with. Most participants had long-term, positive relationships with their doctor which may not represent all patients’ experiences. The involvement of companions in some of the interviews may have influenced the patient’s responses and how free they felt to talk about their experience and medicines. However, companions were only involved if deemed appropriate by the patient and it was not an eligibility criterion. In “real world” discussions of medications, it is likely that some companions would have been involved or at least present, so we decided not to actively stop companions from being present during the interviews. Older people and their companions have varied experiences and attitudes related to their medicines that differed in the extent to which they are open to deprescribing and involved in decisions. This group is most likely to be on multiple medicines, to benefit from deprescribing, and to be challenging in terms of prescribing for doctors, because the evidence is so uncertain. The apparent contradictions in older people’s attitudes to deprescribing when measured quantitatively may be explained by variation on important features, including the way they value their medicines, their level of knowledge, and the role of trust in their doctor. Understanding the decision-making preferences of older people in the context of medicines is important. We have suggested a typology of older people with regards to deprescribing which may be helpful in guiding more effective decision-making and management of medicines for this cohort. Funding This work was supported by a National Health and Medical Research Council (NHMRC) grant awarded to the Screening and Test Evaluation Program (grant number 633003). J.J. and K.M. were supported by NHMRC fellowships. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Conflict of Interest None reported. Acknowledgments We are grateful to the participants and companions who participated in this study. We would like to thank the following people for contributing to the concept, study design, and interpretation of data: Aine Heaney, Debbie Rigby, Jim Colvin, and Les Irwig. K.W., B.N., V.N., C.B., K.M., S.C., A.M., and J.J. developed the original concept and design of this study. All authors contributed to discussion and revisions to the study design. K.W., B.N., C.B., and J.J. contributed to the analysis and interpretation of the data. All authors contributed to drafting and revising the paper and have approved the final version to be submitted. References Ailabouni, N. J. , Nishtala, P. S. , Mangin, D. , & Tordoff, J. M . ( 2016). Challenges and enablers of deprescribing: A general practitioner perspective. PLoS ONE , 11, e0151066. doi: 10.1371/journal.pone.0151066 Google Scholar CrossRef Search ADS PubMed Bagge, M. , Tordoff, J. , Norris, P. , & Heydon, S . ( 2013). Older people’s attitudes towards their regular medicines. Journal of Primary Health Care , 5, 234– 242. Google Scholar PubMed Barton, J. L. , Trupin, L. , Tonner, C. , Imboden, J. , Katz, P. , Schillinger, D. , & Yelin, E . ( 2014). 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The Journals of Gerontology Series B: Psychological Sciences and Social Sciences – Oxford University Press
Published: Nov 28, 2017
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