The Journal of Bone & Joint Surgery

The Journal of Bone & Joint Surgery, Volume 86, Issue 7

Scientific Articles | July 01, 2004

The Moving Target: A Qualitative Study of Elderly Patients' Decision-Making Regarding Total Joint Replacement Surgery

Jocalyn P. Clark, MSc, PhD¹; Pamela L. Hudak, BScPT, PhD²; Gillian A. Hawker, MD, MSc, FRCPC³; Peter C. Coyte, PhD⁴; Nizar N. Mahomed, MD, ScD, FRCSC⁵; Hans J. Kreder, MD, MPH, FRCSC⁶; James G. Wright, MD, MPH, FRCSC⁷

¹ BMJ Publishing Group, BMA House, Tavistock Square, London WC1H 9JR, United Kingdom
² Department of Medicine, St. Michael's Hospital, 30 Bond Street, Toronto, ON M5B 1W8, Canada
³ Department of Medicine, Sunnybrook and Women's College Health Sciences Centre, 76 Grenville Street, 10th Floor, East Room 1010, Toronto, ON M5S 1B6, Canada
⁴ Graduate Department of Health Policy, Management and Evaluation, McMurrich Building, University of Toronto, Toronto, ON M5S 1A8, Canada
⁵ Division of Orthopaedics, Toronto Western Hospital, EC 1-002, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada
⁶ Division of Orthopaedic Surgery, Sunnybrook and Women's College Health Sciences Centre, 2075 Bayview Avenue, MG 365, Toronto, ON M4N 3M5, Canada
⁷ Division of Orthopaedic Surgery, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada. E-mail address: jim.wright@sickkids.ca

View Disclosures and Other Information

In support of their research or preparation of this manuscript, one or more of the authors received Grant MT-15469 from the Medical Research Council of Canada and Grant 99/093 (renumbered as 99/0143 in 2001) from the Canadian Arthritis Society. J.P.C. is a doctoral fellow of the Canadian Institutes of Health Research, G.A.H. and J.G.W. are recipients of Canadian Institutes of Health Research (formerly Medical Research Council) Investigator Awards, and J.G.W. is the R.B. Sauter Chair of Surgical Research. Financial support from these sources is acknowledged. None of the authors received payments or other benefits or a commitment or agreement to provide such benefits from a commercial entity. No commercial entity paid or directed, or agreed to pay or direct, any benefits to any research fund, foundation, educational institution, or other charitable or nonprofit organization with which the authors are affiliated or associated.

This work was presented at the Annual Meeting of the Society for Clinical Epidemiology and Health Care Research, San Diego, California, May 11, 2001, and the International Qualitative Health Research Conference, Banff, Alberta, Canada, April 21, 2000.

The Journal of Bone and Joint Surgery, Incorporated

J Bone Joint Surg Am, 2004 Jul 01;86(7):1366-1374

5 Recommendations (Recommend) | 3 Comments | Saved by 3 Users Save Case

Article

Comments (0)

text A A A

Abstract

Background: Total joint replacement is an accepted, cost-effective, and underutilized treatment for moderate-to-severe hip and knee arthritis. Yet, research has suggested that many patients with arthritis are unwilling to consider total joint replacement surgery. We sought to understand these patients' unwillingness by exploring the nature of their decision-making processes.

Methods: In-depth interviews were conducted with seventeen individuals with moderate-to-severe arthritis who were appropriate candidates for, but unwilling to consider, total joint replacement. The interviews were analyzed with use of qualitative methods and content analysis techniques.

Results: Symptoms and information sources were the two main factors influencing patient decision-making. Participants engaged in individualized processes of trading off perceived costs and benefits. Accommodation to pain and disability and minimization of the quality-of-life benefit, in view of decreasing life span, led to a process whereby the threshold at which the benefits compared with the risks would tilt in favor of total joint replacement was constantly shifting, a phenomenon we called "the moving target."

Conclusions and Clinical Relevance: The moving-target characterization sheds light on patients' conceptions of their arthritis and on their unwillingness to consider total joint replacement. This process needs to be considered when developing ways to aid decision-making.

Figures in this Article

Total joint replacement is an accepted, cost-effective, and efficacious treatment for moderate-to-severe hip and knee arthritis^1-3. Our previous research demonstrated that only 10% of patients with arthritis who were deemed to be appropriate candidates for total joint replacement according to clinical criteria were definitely willing to consider the procedure^4,5. Few investigators have used qualitative methodology to ask patients about their decision-making processes regarding treatment for chronic and episodic conditions such as arthritis^6,7. Llewellyn-Thomas et al.⁸ conducted interviews with patients awaiting total joint replacement surgery and found that the burden of symptomatic arthritis was not consistently related to attitudes toward surgery, which suggests that the treatment preferences of patients with arthritis cannot be predicted readily.

Appropriate decision-making by the patient is believed to be important to optimize patient outcomes and to improve health-care delivery^9-11. Decision theorists have directed much effort to the development of models that both explain patient processes and enhance decision-making^12,13. Based largely on econometric analyses, conventional decision-making models conceive of patient preferences and expectations as statistical expressions of the probabilities associated with "trading off" risks and benefits¹². Patient decision-making processes are seen to involve the gathering of information on available choices, needs, risks, and benefits and then the systematic weighing or analyzing of alternatives with the aim of achieving the highest gain at the least cost¹⁴.

Efforts to aid decision-making have largely centered on providing information to patients in an effort to make trade-offs explicit and clear. A process whereby patients receive appropriate and sufficient information has been called shared decision-making¹⁵. Shared decision-making may affect the patients' comfort and satisfaction with the decision-making process and may affect their decisions. For example, when patients with herniated discs were provided an interactive videodisc informing them about treatment choices, fewer patients underwent surgery¹⁶.

Decision-making is a complicated phenomenon. Previous research has shown that patients experience different levels and types of decisional conflict, require different amounts and types of information, perceive risks and effectiveness of treatment options differently, and have variable preferences with regard to the physician-patient relationship^7,17-19. While some patients want complete control and others want physicians to make all treatment decisions, most want to share the decision-making with their physicians²⁰. Decision-making models, however, have focused predominantly on detailed conceptualizations of the standard, so-called rational patient. Rather than explain and account for the individual subjectivity, fear, ambiguity, and emotion that often enter into health-care decisions, typical decision-making models attempt to categorize and operationalize these subjective experiences in statistical or formulaic terms^11,13. Critics of decision-making models see these attempts to fashion a universal rationality and generality as counter to actually understanding patient decision behavior, and they fault decision models for being overly reductionistic of individual experiences and overly prescriptive of how decisions should be made. As Ridderikhoff¹³ asserted, contemporary decision models are no longer interested in how people behave but in how they ought to behave. Although standard decision-making models have provided a great deal of insight, alternative ways of explaining and understanding patient decision-making are crucial.

The purpose of this study was to understand the decision-making processes of appropriate candidates for total joint replacement who did not want to undergo the surgery.

Materials and Methods

Materials and Methods | Results | Discussion | Appendix | References

Setting and Sampling

The study took place in Toronto, Ontario, Canada, a large, urban area. Qualitative methods were employed because they are conducive to the study of processes²¹. Qualitative methodology sacrifices generalizability (such as is obtainable with close-ended questionnaires in random samples of patients) for more in-depth and detailed analyses of small subgroups of patients²². This methodology allowed us to explore the decision-making process as well as the social contexts in which patients make decisions.

A purposive sample of individuals with arthritis was generated from a previous large population-based study⁵. Our sample was drawn from a group of 176 individuals with lower-extremity arthritis who were unwilling to consider total joint replacement. All patients in our sample had severe disabling arthritis confirmed by a score of =39 of 100 points on the Western Ontario and McMaster Universities (WOMAC) Osteoarthritis Index Scores. Radiographs also confirmed the presence of arthritis. The patients had no contraindications to surgery. Trained physical therapists visited participants in their homes and presented them with a standardized description of the consequences of not having surgery, alternative treatments, and the risks and benefits of joint replacement (including the projected life span of the replaced joints). Participants were told: "In people with complaints like yours, total joint replacement (knee or hip) might be a good treatment for you to consider if you haven't already." They were then asked about their willingness to consider having total joint replacement. Participants who reported that they were probably or definitely not willing to consider surgery at the time of the assessment were eligible for inclusion in our study. Of the 176 patients, we excluded thirty who had had prior total joint replacement, eighty with a WOMAC score of <39 points, five who had psychiatric or neurological disorders, and fourteen whose poor health precluded another home visit. Of the remaining forty-seven patients, seventeen could not be contacted and thirteen declined to be included in the study. The study was approved by university and hospital research ethics review committees.

Data Collection and Analysis

All seventeen individuals who participated lived in Toronto, and they ranged in age from fifty-nine to eighty-one years (mean, sixty-nine years) at the time of the interview. We interviewed the patients within twelve months after the previous in-home interview. Nine of the participants were women. Nine participants (seven of whom were women) lived alone. Four participants had hip arthritis, ten had knee arthritis, and three had both hip and knee arthritis. Despite our exclusion criteria, one participant with arthritis of other joints was identified during the interview as having had a previous total joint replacement. Her findings were similar to those for other participants, despite the total joint replacement.

Interviews were conducted with a semi-structured interview guide (see Appendix), revolving around two key issues: (1) the sources and nature of information that the patients had received about total joint replacement and the support that they could expect if they had the procedure, and (2) the preferences, motivations, and needs that were important when the participants considered arthritis management in general and total joint replacement in particular. All interviews took place in the participants' homes, except for one that was conducted in a private office at the hospital's research unit. The interviews, conducted by an individual who was experienced in conducting qualitative interviews, lasted between two and three hours (mean, 2.5 hours), were tape-recorded, and were transcribed verbatim. There was no further data collection after the seventeen interviews because, although the details and examples in the participants' accounts were often unique, there was sufficient information from which to identify the process of decision-making relevant to our objective.

The data were subjected to qualitative content analysis, which involves identifying, coding, and categorizing patterns²³. Following transcription, each interview was initially read for accuracy and was then reviewed to identify emergent themes and potential contradictions. On completion of all interviews, the entire set of transcripts was read to get a sense of the whole and to generate a coding scheme (i.e., abbreviated phrases describing concepts and themes) based on issues identified from the data²⁴. The codes were then applied to the data to refine the coding development and to establish potential categories. Next, categories were developed, and they served to organize codes into meaningful clusters. Codes and categories were collapsed to evaluate emerging patterns and themes until the point was reached where no new information pertaining to our study question was generated. Patient transcripts were then reviewed to determine the proportion of patients whose answers corresponded to the major codes²⁵. The credibility and rigor of the analysis were aided by coanalysis of transcripts by two of the researchers and continual reexamination of the emergent data throughout the research process. Discrepancies in interpretation were discussed and resolved during consensus meetings and consultation. Arbitrary initials were used to distinguish our participants while protecting their confidentiality. These initials are used in this report.

Results

Materials and Methods | Results | Discussion | Appendix | References

We first describe the main factors influencing patients' decisions, we then highlight how the issues described by participants were organized into "costs" and "benefits," and finally we describe patients' unique processes of "trading off" costs and benefits. The codes and coding tree are provided in Figure 1 and the Appendix.

View Large | Download Slide(.ppt)
Add to My JBJS

Fig. 1: Coding tree. Segments of the transcripts were coded according to these categories or codes. Additional definition of terms can be found in the Appendix. TJR = total joint replacement, and HCP = health-care professionals.

Factors Influencing Decisions

Participants differed in terms of the relative importance that they assigned to their symptoms and information sources. We found that these factors could work both as prompts for and barriers to total joint replacement and, as such, they demonstrate highly individualized processes of decision-making.

Symptoms

As expected, pain was the most important and frequent symptom. Pain was an ongoing presence in the lives of all participants. Participants also indicated that they had substantial disability because of their pain. In declining to consider total joint replacement as an option, however, participants described different perceptions of their pain symptoms. Either increased symptoms or a change in symptoms was identified as a possible catalyst for a decision. In general, however, the participants did not describe a clear-cut event that would necessarily cause them to consider total joint replacement. Instead, a gradual increase in pain or decrease in mobility was seen in relation to the decreasing efficacy of their current treatment regimen. All participants had, at one point during their treatment for arthritis, taken pain or anti-inflammatory medications and/or undergone physical therapy, and some were currently taking medication for symptoms.

A change in the nature or frequency of pain motivated participants to consider "doing something" to ease the suffering:

Well, I'm gonna have to [think about total joint replacement]. Again more and more pain, I have to do something... Oh I tell you, the worst trouble is in the morning, when I wake up from the bed. I think the worst thing now is my feet. I can't sit up. I have to help myself [up]. (Ms. B)

In declining to consider total joint replacement as an option for the treatment of severe arthritis, however, participants gave evidence of different perceptions of their pain symptoms. Episodes of pain, even when debilitating and severe, often were not seen to be serious enough to warrant total joint replacement:

I don't think [I'm bad enough]... I think I'd be a way back. Back of the list for anything like that... Unless they run out of patients! I can go down stairs without going one at a time, but I can't come up. (Ms. W)

Other participants perceived their type of pain, especially if it "comes and goes," as not troubling enough for them to consider surgery:

Well I don't really think it's bad enough. You know, it will hurt like hell sometimes... it will hurt for a couple weeks and then it will clear up, and it might clear up for a couple of months... But you know, just because one bit clears up doesn't mean it all clears up, you know. (Ms. J)I can still get around. I mean, it takes a lot of effort and it hurts sometimes a lot, but I don't think at the moment I'm [a good candidate]... Because it comes and goes. (Ms. H)

I can still get around. I mean, it takes a lot of effort and it hurts sometimes a lot, but I don't think at the moment I'm [a good candidate]... Because it comes and goes. (Ms. H)

Although pain sometimes prompted consideration of total joint replacement, perceptions of the efficacy of the procedure for relieving pain did not always follow. Some individuals mentioned pain relief specifically as the key objectives of total joint replacement surgery:

Definitely the pain. And [total joint replacement] would allow me to... to walk a bit... because I heard that... things are just like... normal. (Mr. T)

Other participants, however, were not convinced that surgery would alleviate the arthritis pain. This was evident in comments suggesting that pain is to be expected and natural and thus is not treatable with total joint replacement:

So I don't know about that—about [total joint replacement] taking away the pains. I think pain is something you always have to live with whether you have surgery or not. (Mr. S)

Perceptions of pain, then, were often contradictory in relation to decisions about total joint replacement. Many participants viewed their pain as severe but still not "bad enough" to warrant consideration of the surgery. Others acknowledged the purported aims of total joint replacement surgery but were unconvinced that it really was effective in the relief of symptoms. Each set of concerns seemed to potentially contribute to an unwillingness to consider total joint replacement.

In summary, pain and the associated disability were viewed as severe by many participants but not "bad enough" to warrant consideration of surgery.

Information Sources

In describing their arthritis and how symptoms influenced their decision-making about total joint replacement, participants made it clear that they were not making decisions in isolation. Instead, they drew on a range of information sources, which were both medical and peer-based and were of varied quantity and quality. Information sources were influential by supplying knowledge about the procedure and framing perceptions of its appropriateness as a treatment option; thus, they contributed in a broad way to decision-making. Accounts regarding information sources also highlighted the nature of patients' relationships with their physicians and their satisfaction with those relationships, which also appear to be related to decisions regarding total joint replacement.

With regard to medical sources of information, most of our participants claimed not to have had good or complete information about total joint replacement in general or about its utility in their particular case. For example, Ms. W reported that, despite ongoing and continuous health care for her arthritis, no medical care provider had ever suggested that she have her knee joint replaced to alleviate the pain and immobility. This may have contributed to her perception that she was not a candidate for the procedure and appears to have precluded her considering its usefulness for her:

No. Nobody's really said anything about it. At this stage I don't think it's necessary.

Likewise, Mr. N claimed that he had not had a discussion about total joint replacement with his health-care providers, despite his severe arthritis pain, but he appeared to want more medical information:

If some specialist can explain it to me, but only if [he or she says]: "These are the risks involved, these are the chances you're given, this is the way it works." Then I might. But I'll decide because I want to get rid of this pain. Because I'm sick and tired of it, really tired.

Aside from medical sources of information, the peers of our participants were highly influential sources of information about total joint replacement and ideas about candidacy. Patients drew extensively on lay sources of information about total joint replacement and in particular relied on accounts of the satisfaction of others who had undergone the surgery. Information from these sources was used to form perceptions of the efficacy of total joint replacement:

It can be a very good deal. That's what I heard, yeah. (Mr. N)Oh, I have friends who have had the replacements. It's like "new bones." Well, it's just marvelous. (Ms. H)

It can be a very good deal. That's what I heard, yeah. (Mr. N)

Oh, I have friends who have had the replacements. It's like "new bones." Well, it's just marvelous. (Ms. H)

Equally, patients had obtained information from peers who had had less-than-ideal surgical outcomes, which suggested to them the potential ineffectiveness of total joint replacement. For example, one participant reported that his friend had undergone total joint replacement but had not experienced sustained pain relief:

He was better for a while and then it stopped, the pain returned... (Mr. A)

Many participants appeared to have constructed their own risk assessment of total joint replacement on the basis of the experience of others. Sometimes, these risk perceptions, based on the accounts of their peers, appeared to deter participants from accepting total joint replacement:

I know, they [his friends, generally] say that because there are chances if the surgery is not successful, then you'll be paralyzed for the rest of your life and all that... that's what people are saying, you see. So that's making me a little bit nervous... When I go to the mall... the people I was discussing [this with] said: "Don't go for hip replacement. [It's] dangerous." (Mr. N)

Peer information sources often powerfully shaped participants' perceptions of and attitudes toward joint surgery and clearly contributed to their unwillingness to have the operation. These sources, however, sometimes provided inaccurate or unreliable information, leading to uncertainty, misconceptions, and possibly fear of total joint replacement. The reliance on lay sources of knowledge about total joint replacement seemed especially salient to our participants in the absence of sufficient physician advice. A lack of accurate medical information about the procedure limited the ability of patients to make an informed decision and may explain, in part, why medically appropriate candidates are unwilling to consider total joint replacement. Furthermore, the perceived legitimacy of peer sources of information suggests that peers may be looked to for social approval of the surgical treatment.

In summary, peer-based information sources were trusted and they powerfully shaped the subjects' perceptions of and attitudes toward joint surgery. These sources, however, sometimes provided information that minimized benefits and inflated risks. Poor information obtained from peers, which is heavily weighted and valued, may be responsible for uncertainty, misconceptions, and fear of total joint replacement and may limit the ability of patients to make an informed decision.

Weighing of Costs and Benefits

From the participants' experiences of symptoms and their information sources emerged a set of perceived benefits related to total joint replacement that were weighed against or traded off with perceived costs. Mr. H, for example, did not want to "get rid of one pain and... adopt another one." His consideration and declining of the procedure were influenced both by what he had "heard" from others and by a chief concern with pain:

Well, I've heard that [total joint replacement] isn't always a pain-free thing... You have a certain amount of pain... [so] I thought, "Well, I'm going to fight this for as long as I can."

The fear of postoperative pain and/or dysfunction was important to many participants. It is notable that, while some patients expressed generalized fear or uncertainty about "having surgery," none expressed explicit concerns about the risk of death or complications of the operation itself.

Participants also reported concerns about postoperative recovery that were related to the security of household and/or social support. For example, Ms. W saw the value of the surgical option for relieving symptoms but expressed concerns about the recovery period that contributed to her unwillingness:

A couple people have told me [the recovery] takes three months... And my daughter says, "Who's gonna look after you when you come out [of the hospital]?"Is that a concern of yours?[My kids], they all work, you know. They can't [take care of me].

A couple people have told me [the recovery] takes three months... And my daughter says, "Who's gonna look after you when you come out [of the hospital]?"

Is that a concern of yours?

[My kids], they all work, you know. They can't [take care of me].

Concerns about outcomes, with regard to both the efficacy of the procedure and the perceived risks of the procedure, detracted from the perceived desirability of the surgical option:

It's not just the success, it's how I'm gonna be after. (Mr. K)Like I said, I don't trust them, and I'm scared to go and have something put in and then it probably would... turns out it's not gonna be any better, maybe even worse... I work with guys, they had it young. I mean they're still off work. And let's put it this way. They... had it done two, three years ago and they're still off of work.Why, because the pain came back?Because they can't perform the same job they done before.... One, well he's been off for six years now but he would be retired now anyway. He never came back after a joint replacement. So I mean then... when I look around me, and I see the results that these guys are not gonna come back to work anyway, even after they have it done. There's no bloody way I'm gonna get it done. (Mr. R)

It's not just the success, it's how I'm gonna be after. (Mr. K)

Like I said, I don't trust them, and I'm scared to go and have something put in and then it probably would... turns out it's not gonna be any better, maybe even worse... I work with guys, they had it young. I mean they're still off work. And let's put it this way. They... had it done two, three years ago and they're still off of work.

Why, because the pain came back?

Because they can't perform the same job they done before.... One, well he's been off for six years now but he would be retired now anyway. He never came back after a joint replacement. So I mean then... when I look around me, and I see the results that these guys are not gonna come back to work anyway, even after they have it done. There's no bloody way I'm gonna get it done. (Mr. R)

Perceived benefits of total joint replacement, on the other hand, were expressed as pain relief and improved mobility:

The most important thing is to get better, to get rid of the pain and aches. That's the most important thing. You know, pain you cannot see it. We can only feel it. So whatever it will take to get rid of the pain, that's the best. (Mr. S)[The benefits for me are that] you can walk better. (Mr. M)

[The benefits for me are that] you can walk better. (Mr. M)

Well, the pros are I could at least work. I'd have my bad days and I could work and kind of just start, you know, carry on the way I was. (Mr. K)

Pain relief and improvement in physical function were seen as related to independence (freedom from others' assistance):

Well, I'd have no pain. I could move better. I could get down on the floor for instance. See, now I can't get up without hanging on something. I have to get a chair or a table or anything to push me up. I cannot get up by myself. I cannot take a bath. I can't do that. (Ms. H)

Thus, the participants' processes of decision-making with regard to total joint replacement involved both a recognition of perceived costs and benefits and a weighing of these factors.

Trading-off Process

What makes the trading-off process of these patients different from the trading-off process described by conventional decision-making theories is that this process was embedded in two issues, accommodation and quality of life, which together constituted a unique context for these patients.

Accommodation

The participants' predominant reaction to the effects of arthritis was extensive accommodation. Alongside perceptions of arthritis as being consistent with the experience of old age were striking accounts of how elderly patients managed their severe arthritis pain and immobility through accommodation. The implication for decision-making was that many of our participants weighed the costs and benefits of total joint replacement with reference to a threshold of pain that was constantly changing. Trade-offs became detailed in terms of what is "cope-able," and the limits of the individual's willingness to cope with the pain and dysfunction of arthritis continued to be extended. Patients' accommodation was extensive and frequently ill defined in terms of the threshold at which they might decide to try something new. For many, the effect was to stall proper and meaningful deliberation regarding total joint replacement.

Mr. R, for example, stated that he would accommodate to the worsening disability without future consideration of total joint replacement:[I'll] do what I'm capable of... in a limited fashion. That's it.Do you think you'll have some restored function in terms of....I don't need any. Restored functions, I mean. I'm not gonna get into the heavy duty stuff.OK. What about walking around?Oh... I'm very content with that. I bought myself an ATV [allterrain vehicle]. If I can't walk, I'll drive around with that thing. I'll make the best of it.... That was another thing, there was another activity I used to have to do if I want to keep warm in the winter: I had to chop wood. Well... two years ago, when all this [arthritis] trouble really started I just bought a wood splitter.Then I... hired a couple of kids out there [to] do it. They're actually happy to operate the machine. At the end of the day, I pay them twenty bucks a piece and I have wood for the rest of the winter... I'm all right. I'm not gonna chop no more by hand.

Mr. R, for example, stated that he would accommodate to the worsening disability without future consideration of total joint replacement:

[I'll] do what I'm capable of... in a limited fashion. That's it.

Do you think you'll have some restored function in terms of....

I don't need any. Restored functions, I mean. I'm not gonna get into the heavy duty stuff.

OK. What about walking around?

Oh... I'm very content with that. I bought myself an ATV [allterrain vehicle]. If I can't walk, I'll drive around with that thing. I'll make the best of it.... That was another thing, there was another activity I used to have to do if I want to keep warm in the winter: I had to chop wood. Well... two years ago, when all this [arthritis] trouble really started I just bought a wood splitter.

Then I... hired a couple of kids out there [to] do it. They're actually happy to operate the machine. At the end of the day, I pay them twenty bucks a piece and I have wood for the rest of the winter... I'm all right. I'm not gonna chop no more by hand.

Others, too, deferred to the pain and made vast accommodations, not expecting to ever decide to have the surgery:

So your knees aren't... bad enough in other words.Oh they're bad. They're bad but I just persevere.OK. So they're bad but not bad enough.Well they're not... they're not hanging off in stubs like... you know. I take them as they hurt. You know. They hurt. And they're swelled. They're both swelled up... But you... live and learn... especially here, cuz there's a lot of things you can do you know. Really there is, that... you... don't think you can do but you do. (Mr. K)

So your knees aren't... bad enough in other words.

Oh they're bad. They're bad but I just persevere.

OK. So they're bad but not bad enough.

Well they're not... they're not hanging off in stubs like... you know. I take them as they hurt. You know. They hurt. And they're swelled. They're both swelled up... But you... live and learn... especially here, cuz there's a lot of things you can do you know. Really there is, that... you... don't think you can do but you do. (Mr. K)

In the case of Ms. W, her pain, while severe at times, remained "manageable." She considered the activity restrictions that she had incorporated to be reasonable adjustments to the pain because, she claimed, they did not interfere with the activities that she likes to do:

You know, at times the pain is quite severe but then it will ease off for a while. And, you know, I'm still reasonably mobile. I mean, the things that I cannot do I don't really care that I can't do.

The extent to which she expected to continue accommodating to the illness by making adjustments, though, appeared to have limits. When asked if she might consider total joint replacement in the future, Ms. W responded, "Well, if it becomes necessary, yes."

Other patients described their ability to accommodate to and cope with arthritis in reference to a future threshold that might prompt consideration of total joint replacement. Mr. S reported anticipating a possible, although vaguely conceived, threshold of pain that could prompt him to decide on or reconsider total joint replacement in the future:

When the time comes it gets that bad, and you know, I'll decide for the surgery. But right now I can limp around with it, and let it stay that way. I'll take the pain-killing pills to ease the pain and you live that way.

Some participants discussed the accommodations that they had made with no mention of future consideration of total joint replacement, whereas others acknowledged that a breakdown in the ability to manage or cope might warrant future consideration of total joint replacement. However, it appeared that an ill-defined end point of pain and immobility featured prominently in all of the participants' decision-making processes, complicating our ability to apply generalized health decision theories to understand the unwillingness of elderly patients to undergo total joint replacement.

Accommodations to arthritis by restricting activity or "learning to live with the pain" were the principal strategies of participants. Unwillingness to proceed with total joint replacement often resulted not so much from explicit decisions but from ongoing deliberations and continuing deferrals.

Quality, Not Extension, of Life

Unlike decision-making associated with treatments for health conditions such as cancer^9,17,19,26, patients perceived total joint replacement to be elective and its benefit to involve a potential improvement in quality, rather than extension, of life. Patients' discussions of comorbidities and management strategies highlighted the sharp contrasts in their perceptions of and meanings attributed to arthritis and those attributed to other illnesses. The fact that little relative value was placed on arthritis treatment compared with that of other health-related problems contributed to the participants' unwillingness to undergo total joint replacement:

Let's face it. There's a big difference between your eyesight and your knee. I think after you reach a certain age you say: "What's the point?" I'm not gonna be kicking around [with] all the [knee] operations. I'll be gone in a couple years, you know. Especially with my health.... I'm overweight, I have high blood pressure, [I'm a] borderline diabetic... All these health problems, is it worth [it]? You kind of weigh it. Is it worth going through this? (Mr. K)

We also found that it was a challenge for some patients to consider undergoing total joint replacement to improve quality of life in the context of a shrinking life span. Ms. F, for example, described how her diminishing life expectancy made her unwilling to have surgery:

I'm an old lady. I figure one of these days—poof! I'm gone. So why should I worry about a little thing like having a knee replaced? No. Not at all.

Continued accommodation to symptoms and disability in combination with diminishing life expectancy at each potential decision-making threshold results in a constantly changing risk-benefit ratio. We called this constantly shifting threshold at which the potential benefits traded off against the potential costs might tilt in favor of willingness to undergo total joint replacement the "moving target."

Discussion

Materials and Methods | Results | Discussion | Appendix | References

Shared decision-making is a process by which the patient and physician choose among available treatment options together¹⁵. Patients who participate in decisions are believed to be more confident with those decisions. Aids in shared-decision-making, such as interactive videodiscs, may affect surgical rates¹⁶. Important issues include how shared decision-making should best be done and who should make sure that it happens¹⁵. Our study raises an additional issue: how individuals make health-care decisions.

All participants in the present study provided evidence that they recognized and traded off costs and benefits, a finding that is consistent with conventional decision theories^11,12. The moving target, however, indicated that the processes for deciding about total joint replacement were highly individualized. The moving-target metaphor captures the constantly shifting threshold at which the benefits and costs can tilt in favor of willingness to consider total joint replacement. Because accommodation to symptoms was the chief strategy, trade-offs became detailed in terms of what was "cope-able," and the limit to which the individual could cope continued to be extended²⁷. In addition, because of comorbidities that also required attention and treatment decisions as well the expectation that arthritis is consistent with old age²⁸, elderly patients appeared to undervalue the benefits of total joint replacement. Since total joint replacement is an elective procedure that offers the possibility of improved quality of life only, the costs (pain and need for support during recovery) were perceived as being too high given shrinking life spans. All patients in this study were more than fifty-nine years of age, and younger patients may consider the issues differently. However, for the participants in this study, these issues formed the context of their current unwillingness to accept total joint replacement and, simultaneously, forestalled the future point at which total joint replacement might be seriously considered. In view of the fact that participants had severe disabling arthritis and were clinically appropriate candidates for total joint replacement, their unwillingness is a cause for major concern. If patients are not engaged in discussions with their physicians about their arthritis management, then no shared decision-making can occur.

The patients' decision-making regarding total joint replacement could be supported in several ways. First, many participants did not appear to fully accept or understand medically defined risks and benefits, criteria of candidacy, or what outcomes could realistically be expected for people with the level of dysfunction and pain that they experienced. Thus, efforts to ensure that patients' decisions are adequately and accurately informed are (at the very least) important. These efforts would involve primary care providers taking responsibility for ensuring a basic and sufficient level of information about the total joint replacement procedure that is both comprehensive and sensitive to individual patient's needs. Equally, our subjects' accounts suggest the need for heightened support and validation of arthritis symptoms from health-care providers, particularly primary care physicians^7,29.

Second, our research suggests a real concern on the part of patients about social support. A lack of social support frequently accompanies aging, which then creates the possibility that patients are not merely unwilling to accept the costs of rehabilitation but are in fact unable to secure support during their recovery. Under these circumstances, fear of dependency following total joint replacement may become a crucial part of the decision to not have the procedure, especially since recovery is prolonged and requires active work on the part of the patient. As a result of the need to get to and from medical appointments, the time commitments required during rehabilitation, and difficulties with maintenance of daily activities, recovery is neither easy for arthritic patients nor something that they can do independently. In the absence of social support, unwillingness to consider total joint replacement may be a reasonable decision.

Third, the views of patients' peers are important. Although we believe that health-care providers have a fundamental responsibility to provide clear, accurate information and sufficient decision support, peer sources of information and support were extremely important to many participants. Thus, it would seem advantageous to capitalize on patients' reliance on peers for information on the efficacy of total joint replacement and the nature and acceptability of recovery. For example, decision-support aids should feature peers as potential candidates for replacement. Patients may also substantially benefit from talking to others who have had the surgery.

Finally, unwillingness to undergo total joint replacement resulted from a process that was more complicated than the systematic gathering together of pros and cons and the output of an explicit decision. A range of factors and sources of information and support were at play. The relative contributions of each of these factors cannot reasonably be fashioned into a "one size fits all" decision formula. Thus, quantitative models that attempt to transform and capture diverse patient experiences into normative models are probably insufficient. At least two implications flow from the moving target. First, because unwillingness to consider total joint replacement at one point in time cannot be assumed to hold for all times, decisions about total joint replacement may be provisional at best. Clinicians should be prepared to provide or take responsibility for ongoing decision support related to arthritis in general and total joint replacement in particular. Second, patients were reluctant to envision benefit scenarios that involved future payoffs. Confronted with a choice between the status quo, which entails a trajectory of pain and limits of physical function, and total joint replacement surgery, which is associated with immediate surgical and rehabilitation costs and risks and an uncertain future stream of benefits, it may not be surprising that patients resist the surgical option. The moving-target trade-off is particularly salient for understanding this unwillingness because decisions take place within the context of a shortening life span. While the particular issue of life expectancy may not be as easily modifiable, clinicians should be aware of it as one possible influence on patient decision-making.

Our study had several limitations. First, our small sample size of seventeen participants, although consistent with qualitative research methods^{17,19,21,26,30}, limits the generalizability of our findings. However, because the moving-target phenomenon was observed in sixteen of our seventeen patients, we believe that the results are applicable to other, similar patients. Given that only 10% of appropriate candidates in our prior population-based study were definitely willing to consider total joint replacement, we believe that the results of the present study are important^4,5. Second, concerns about social support following surgery and their impact on patients' decisions were evident but not well explicated. Also, our small sample size precluded fuller articulation of gender differences. In light of sex-related differences in the rate of use of surgery⁵ and previous focus group research indicating that female patients with arthritis face practical barriers when considering total joint replacement⁶, the issue of social support demands more focused research attention. Likewise, differences across racial or ethnic groups³¹ were not examined in this study but also warrant additional research.

In conclusion, the complexity of decision-making, in particular the concept of a moving target, challenges our attempts to model and help patients make decisions about arthritis treatment such as total joint replacement. This insight into the decision-making process enhances our understanding of patients' unwillingness to consider surgery and highlights ways to improve arthritis care and treatment.

Appendix

Materials and Methods | Results | Discussion | Appendix | References

The interview guide and the total joint replacement codes used in this study are available with the electronic versions of this article, on our web site at (go to the article citation and click on "Supplementary Material") and on our quarterly CD-ROM (call our subscription department, at 781-449-9780, to order the CD-ROM).

References

Materials and Methods | Results | Discussion | Appendix | References

Chang RW, Pellisier JM, Hazen GB. A cost-effectiveness analysis of total hip arthroplasty for osteoarthritis of the hip. JAMA.1996;275: 858-65.275858 1996 [PubMed][CrossRef]

Hawker G, Wright J, Coyte P, Paul J, Dittus R, Croxford R, Katz B, Bombardier C, Heck D, Freund D. Health-related quality of life after knee replacement. J Bone Joint Surg Am.1998;80: 163-73.80163 1998

Liang MH, Cullen KE, Larson MG, Thompson MS, Schwartz JA, Fossel AH, Roberts WN, Sledge CB. Cost-effectiveness of total joint arthroplasty in osteoarthritis. Arthritis Rheum.1986;29: 937-43.29937 1986 [PubMed][CrossRef]

Hawker GA, Wright JG, Coyte PC, Williams JI, Harvey B, Glazier R, Wilkins A, Badley EM. Determining the need for hip and knee arthroplasty: the role of clinical severity and patients' preferences. Med Care.2001;39: 206-16.39206 2001 [PubMed][CrossRef]

Hawker GA, Wright JG, Coyte PC, Williams JI, Harvey B, Glazier R, Badley EM. Differences between men and women in the rate of use of hip and knee arthroplasty. N Engl J Med.2000;342: 1016-22.3421016 2000 [CrossRef]

Karlson EW, Daltroy LH, Liang MH, Eaton HE, Katz JN. Gender differences in patient preferences may underlie differential utilization of elective surgery. Am J Med.1997;102: 524-30.102524 1997 [CrossRef]

Forbes S, Hoffart N. Elders' decision making regarding the use of long-term care services: a precarious balance. Qual Health Res.1998;8: 736-50.8736 1998 [PubMed][CrossRef]

Llewellyn-Thomas HA, Arshinoff R, Bell M, Williams JI, Naylor CD. In the queue for total joint replacement: patients' perspectives on waiting times. Ontario Hip and Knee Replacement Project Team. J Eval Clin Pract.1998;4: 63-74.463 1998 [PubMed][CrossRef]

Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med.1997;44: 681-92.44681 1997 [PubMed][CrossRef]

Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med.1999;49: 651-61.49651 1999 [PubMed][CrossRef]

Llewellyn-Thomas HA. Investigating patients' preferences for different treatment options. Can J Nurs Res.1997;29: 45-64.2945 1997 [PubMed]

Llewellyn-Thomas HA. Patients' health-care decision making: a framework for descriptive and experimental investigations. Med Decis Making.1995;15: 101-6.15101 1995 [PubMed][CrossRef]

Ridderikhoff J.Methods in medicine: a descriptive study of physicians' behaviour. Dordrecht: Kluwer Academic Publishers; 1989. 1989

Schneider CE.The practice of autonomy: patients, doctors, and medical decisions. New York: Oxford University Press; 1998. 1998

Weinstein JN. The missing piece: embracing shared decision making to reform health care. Spine.2000;25: 1-4.251 2000 [PubMed][CrossRef]

Phelan EA, Deyo RA, Cherkin DC, Weinstein JN, Ciol MA, Kreuter W, Howe JF. Helping patients decide about back surgery: a randomized trial of an interactive video program. Spine.2001;26: 206-12.26206 2001 [PubMed][CrossRef]

Boon H, Brown JB, Gavin A, Kennard MA, Stewart M. Breast cancer survivors' perceptions of complementary/alternative medicine (CAM): making the decision to use or not to use. Qual Health Res.1999;9: 639-53.9639 1999 [PubMed][CrossRef]

Borkan JM, Quirk M, Sullivan M. Finding meaning after the fall: injury narratives from elderly hip fracture patients. Soc Sci Med.1991;33: 947-57.33947 1991 [PubMed][CrossRef]

Kelly-Powell ML. Personalizing choices: patients' experiences with making treatment decisions. Res Nurs Health.1997;20: 219-27.20219 1997 [CrossRef]

Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med.1996;156: 1414-20.1561414 1996 [PubMed][CrossRef]

Creswell JW.Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks, CA: Sage; 1998. 1998

Wright JG, McKeever P. Qualitative research: its role in clinical research. Ann R Coll Physicians Surg Can.2000;33: 275-80.33275 2000

Patton MQ.Qualitative evaluation and research methods. 2nd ed. Newbury Park, CA: Sage; 1990. 1990

Lofland J, Lofland LH.Analyzing social settings: a guide to qualitative observation and analysis. 3rd ed. Belmont, CA: Wadsworth; 1995. 1995

Seale C.The quality of qualitative research. London: Sage; 1999. 1999

Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ.2000;320: 909-13.320909 2000 [PubMed][CrossRef]

Steultjens MP, Dekker J, Bijlsma JW. Coping, pain and disability in osteoarthritis: a longitudinal study. J Rheumatol.2001;28: 1068-72.281068 2001 [PubMed]

Hudak PL, Clark JP, Hawker GA, Coyte PC, Mahomed NN, Kreder HJ, Wright JG. "You're perfect for the procedure! Why don't you want it?" Elderly arthritis patients' unwillingness to consider total joint arthroplasty surgery: a qualitative study. Med Decis Making.2002;22: 272-8.22272 2002 [PubMed]

Ballantyne PJ, Hawker GA, Radoeva D. The extended self: illness experiences of older married arthritis sufferers. In: Kronenfeld JJ, editor. Research in the sociology of health care: changing consumers and changing technology in health care and health care delivery. New York: Jai; 2001. 2001

Quandt SA, Arcury TA. Qualitative methods in arthritis research: overview and data collection. Arthritis Care Res.1997;10: 273-81.10273 1997 [PubMed][CrossRef]

Katz JN. Preferences, quality, and the (under)utilization of total joint arthroplasty. Med Care.2001;39: 203-5.39203 2001 [CrossRef]

Topics

arthritis ; decision making ; pain ; arthroplasty, replacement ; elderly

Username

Password

Access for Patients

Forgot Password?

Have a subscription to the print edition?

Not a Subscriber?

Buy this Article

Get online access for 30 days for $35

New to JBJS?

Subscribe to the online edition for 30 days for $75

Register for a FREE limited account to get full access to all CME activities, to comment on public articles, or to sign up for alerts.

Have a subscription to the print edition?

Current subscribers to The Journal of Bone & Joint Surgery in either the print or quarterly DVD formats receive free online access to JBJS.org.

Activate your online account now

Forgot your password?

Enter your username and email address. We'll send you a reminder to the email address on record.

Username:*

Email Address:*

Forgot your username or need assistance? Please contact customer service at subs@jbjs.org. If your access is provided
by your institution, please contact you librarian or administrator for username and password information. Institutional
administrators, to reset your institution's master username or password, please contact subs@jbjs.org

References

Accreditation Statement

These activities have been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the American Academy of Orthopaedic Surgeons and The Journal of Bone and Joint Surgery, Inc. The American Academy of Orthopaedic Surgeons is accredited by the ACCME to provide continuing medical education for physicians.

CME Activities Associated with This Article

Submit a Comment

Please read the other comments before you post yours. Contributors must reveal any conflict of interest.
Comments are moderated and will appear on the site at the discretion of JBJS editorial staff.

* = Required Field

Comment Author(s) * (if multiple authors, separate names by comma)

Example: John Doe

Affiliation & Institution*

Comment Title*

Comment*

Cancel

Print
PDF
Email

Recipient(s) will receive an email with a link (good for 5 days) to 'The Moving Target: A Qualitative Study of Elderly Patients' Decision-Making Regarding Total Joint Replacement Surgery'.
Your Name:*
Example: John Doe

Email Address:* CC Me:
Enter your valid email address. Example: jdoe@example.com

Recipient's Email Address:*

Separate multiple email address with semi-colons (up to 5).

Subject:* 's The Journal of Bone & Joint Surgery: 'The Moving Target: A Qualitative Study of Elderly Patients' Decision-Making Regarding Total Joint Replacement Surgery'
Subject for your email.

Message:

(Optional, message will truncate at 1000 characters)

Processing your request... Please Wait...

Copyright © in the material you requested is held by The Journal of Bone & Joint Surgery, Inc. (unless otherwise noted). This email ability is provided as a courtesy, and by using it you agree that that you are requesting the material solely for personal, non-commercial use, and that it is subject to Journal of Bone & Joint Surgery, Inc.'s Terms of Use. The information provided in order to email this topic will not be used to send unsolicited email, nor will it be furnished to third parties. Please refer to The Journal of Bone & Joint Surgery Inc.'s Privacy Policy for further information.

Copyright © The Journal of Bone & Joint Surgery Inc. All rights reserved.
Share
Get Citation

Jocalyn P. Clark, Pamela L. Hudak, Gillian A. Hawker, Peter C. Coyte, Nizar N. Mahomed, Hans J. Kreder, James G. Wright; The Moving Target: A Qualitative Study of Elderly Patients' Decision-Making Regarding Total Joint Replacement Surgery. The Journal of Bone & Joint Surgery. 2004 Jul;86(7):1366-1374.

Download citation file:

RIS (Zotero)

EndNote

BibTex

Medlars

ProCite

RefWorks

Reference Manager

Copyright © The Journal of Bone and Joint Surgery, Inc.
Rights & Permissions
Article Alerts

Processing your request... Please Wait.
Submit a Comment
Data Supplements