Justifying patient self-management – evidence based medicine or the primacy

of the first person perspective

Søren HolmCardiff Institute of Society, Health and Ethics, 53 Park Place, Cardiff CF10 3AT, UK & Centre for Medical Ethics, University

of Oslo (E-mail: HolmS@cardiff.ac.uk)

Abstract. Patient self-management programmes have become increasingly popular and are now alsoreceiving official endorsements. This paper analyses two possible types of positive justifications forpromoting patient self-management: evidence-based and patient-centred justifications. It is argued thatevidence-based justifications, although important politically are deficient and that the primary justificationfor patient self-management must be a patient-centred justification focusing on the patient’s privilegedaccess to his or her own lived body.

Key words: expert patient, lived body, self-care, self-management

Introduction

This paper is prompted by a reading of the BritishDepartment of Health’s (DoH) document on the‘‘Expert patient’’ from 2001 (Department ofHealth, 2001). Instead of analysing the documentin detail or criticising it explicitly I will try toanalyse the concept of the expert patient on amore fundamental level, and especially discuss thestrengths and weaknesses of different justificationsof the idea that expert patients should have alarger role in the management of their owndisease.1 I am thus mainly using the documentas a springboard for a more general analysis.Others have read the document and patient self-management approaches more generally in aFoucauldian light, either as examples of a specifickind of ‘‘Technologies of the self’’ (Willems,2000), or as an exercise of ‘‘Pastoral power’’(Wilson, 2001). I am not fully qualified tocomment on these readings, but I find it interest-ing that although both authors are drawing onaspects of Foucault’s work, they come to partlycontradictory conclusions, especially regardingwhether patient self-management threatens orenhances professional status and power.

The expert patient – some initial observations

The idea that patients with chronic diseases canbecome expert in interpreting their own symptomsand managing their own disease is not new.Historically most patients self-managed or managed

without professional health care intervention be-cause there was no professional health care inter-vention to be had. And even now, where there is anaccessible professional health care system in mosteconomically developed countries patients still self-manage, and this has also been explicitly orimplicitly recognised in medical practice for a longtime. Doctors have for instance for a long time beensaying to patients that they ‘‘should not do morethan you feel comfortable with, you know your ownbody and its limits’’, or ‘‘if you get any newsymptoms call me’’, or ‘‘if the pain gets worseincrease the number of pain killers, and if that doesnot help come and see me’’. These statements allrely on the notion that patients can identifydevelopments in their disease process and respondappropriately. The current reality is therefore notthat diseases are managed by doctors or nurses andthat there is no self-management. Total profes-sional management is only approximated in differ-ent kinds of intensive care units. In all other casespatients self-manage most of the time, and what weare discussing is really only the scope of that self-management with regard to changes of medicationand other ‘‘medical’’ interventions. It could perhapsbe objected that this initial analysis does not takesufficient account of the well-known distinctionbetween disease and illness. What patients do is notmanaging their disease but managing their illness.They are essentially managers of their symptomsand other subjective disease manifestations. It isstill doctors who manage the disease. I think thisobjection fails, partly because it is exceedinglydifficult to separate the management of the disease

Medicine, Health Care Philosophy (2005) 8:159–164 � Springer 2005

DOI 10.1007/s11019-005-2280-x

from the management of the illness, partly becausemany of the things which patients do causallyinfluence both their disease and their illness, andpartly because modern self-management ofteninvolves the use of measuring devices like peakflow or blood glucose meters that measure diseaseand not illness related parameters.

The DoH builds its expert patient policy pri-marily on the conceptualisation of patient self-management or self-care developed by Holmanand Lorig in California since the 1970s (Lianget al., 2002; Lorig and Holman, 2003). This linkssuccessful self-management with the attainment ofself-efficacy, embedding self-management withinthe wider theoretical framework of social cognitivetheory proposed by Bandura (2001). There areother well developed self-care frameworks, forinstance the one proposed by the nurse theoristOrem (Orem, 2001, Taylor et al., 2000), but theseseem to have played no role in the deliberations ofthe DoH working group. The DoH thus relies onwhat one could call the classical model of patientself-management where self-management educa-tion is conceptualised as the intervention and self-management behaviour as the immediate outcomeand good long-term results as the final outcome(see for instance Heisler et al., 2002; Liang et al.,2002; Norris et al., 2002; Lorig and Holman,

2003). Self-management behaviours are not seenas something that always already takes place.Graphically this model can be represented as inFigure 1.

The DoH’s paper goes further than currentsemi-official practice in two directions. First itadvocates more freedom to manage medications(although of course patients may well already havesuch freedom to a large extent by not takingmedication when they do not feel that it isnecessary, and taking extra medication from theirpersonal stock when they feel that they need morethan they have been prescribed), and second itimplies that specific training and knowledge isnecessary to attain the status of expert patient, astatus which furthermore has to be conferred bythe health care system.

The last part of the DoH’s ideas about expertpatients, that it is a semi-official status to beconferred by the health care system, is so strangethat I find it difficult to understand or respond to.It seems to imply that expertness in this context isprimarily a set of specifiable cognitive skills com-bined with a specific base of knowledge and thatonly those who possess these can be expertpatients. This rules out anyone who is managinghis or her own disease successfully using forinstance an idiosyncratic personal heuristic. If

Self-Management Education

Beliefs, attitudes, coping skills, self-efficacy

Self-Management Behaviour

Knowledge

Short term outcomes

Long term outcomes

Figure 1. The classical conception of patient self-management.

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studies of decision-making have shown us anythingit is that tacit knowledge and heuristics play a largerole in all kinds of expert decision-making. Whyshould we not recognise this as expertise in patientswhen we do for instance, recognise it as expertise innursing (Benner, 1984)?

Justifying a larger role for the expert patient

How can we philosophically justify giving a largerrole to the expert patient in the management of hisor her own disease? Here we can distinguishbetween negative and positive justifications. Thenegative justifications have the form ‘‘expertpatients should have a larger role because argu-ment N entails that present restrictions on the roleof patients are unwarranted’’ whereas the positivejustifications have the form ‘‘expert patients shouldhave a larger role because argument P entails thatthere are good positive reasons to enlarge the roleof patients.’’

The main negative justification is that patientautonomy directly entails much more patientinvolvement in disease management than is com-mon at present. I will not dwell on this point sinceit has been extensively discussed in the literaturealready, for instance in the context of patientcompliance (Holm, 1993).

There are two possible positive justifications:

1. Patient self-management should be promoted be-cause there is good evidence to show that it worksbetter or is more efficient than traditional styles ofpatient management.

2. Patient self-management should be promoted be-cause we have good reasons to believe that the firstperson perspective and the patient’s understandingof their own lived body is essential to successfulmanagement of disease.

The first of these positive justifications fits nicelywith the current evidence-based medicine ideology;interventions and methods should be introduced inhealth care practice if and only if there is goodevidence of effectiveness; and it is politicallypowerful if it can be shown that self-managementsaves money. This is essentially a collective justi-fication focusing on the total benefits of introduc-ing more self-management. The second positivejustification is much more individualised.

The two justifications are not mutually exclu-sive. It is possible to hold both at the same timeand to claim that each is an essential component ofthe complete justification for self-management. But

it is still of interest to ask which should be seen asthe primary justification, since that may influencethe overall conceptualisation and implementationof the practice of patient self-management.

That the first justification is preferred by theDoH can be seen from a section in the documentcalled ‘‘A Vision of Success’’:

Ultimately if the Expert Patients Programme issuccessful the future role of patients with chronicdisease will be very different. Some of these dif-ferences will show as:

– many more patients with chronic diseases im-prove, remain stable or deteriorate more slowly;

– many more patients can manage effectively spe-cific aspects of their condition (such as pain,complications, medication use);

– patients with chronic diseases are less severelyincapacitated by fatigue, sleep-deprivation, lowlevels of energy and the emotional consequencesof their illness;

– patients with chronic diseases are effective inappropriately accessing health and social careservices and gaining and retaining employment;

– many more patients with chronic diseases arewell informed about their condition and medi-cation, feel empowered in their relationship withhealth care professionals, and have higher selfesteem;

– people with chronic diseases contribute theirskills and insights for the further improvement ofservices and as advocates of others. (Departmentof Health, 2001, pp. 7–8)

Four of the six points refer exclusively to medicaleffectiveness, and only one, the last, is completelyfree of a slant towards effectiveness.

Which of these positive justifications providesthe best, strongest or most promising justificationfor creating a larger role for the expert patient?

The first justification (the evidence based justi-fication) is problematic because it only justifies thelarger role if it is empirically the case that the largerrole is more efficient (creates better outcomes ingeneral). Patient self-management is thus con-ceived in a purely instrumental fashion. If self-management is not efficient we should, on this lineof argument, positively discourage or forbid it. It isessentially a tool to achieve certain ends. It is also aline of argument that seems to misconstrue thepatient’s interest in self-management. Among thereasons that I, as a patient may have for wanting toself-manage my disease is that I want to be incontrol of my life and that I want a better outcome

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for me. For me, as an individual it is irrelevantwhether self-management as such produces betterresults, what is important is the result for me andmy perception of that result. The first justificationis essentially a collective, system justification. Thekind of justification that we would seek if patientself-management could reasonably be conceptua-lised as a mere tool to attain collective ends. Butsuch a conceptualisation of self-management isdeficient because it leaves out the self-manager’sown perspective.

A further problem is that this justification relieson ‘‘successful management’’ being defined in away that can be measured and quantified. Oftenthis means that success will be defined in terms of‘‘hard’’ outcomes like survival or lab results, andthese success parameters may (as argued above)not be what defines successful management for theindividual patient. In the more recent literature onpatient self-management this issue has been recog-nised to some degree and there is a tendency toinclude ‘‘quality of life’’ among the outcomes thatare measured and an improvement in quality of lifeas one of the goals. In a recent review of diabetesself-management education (DSME) we can forinstance read that ‘‘The goals of DSME are tooptimize metabolic control and quality of life andto prevent acute and chronic complications, whilekeeping costs acceptable’’ (Norris et al., 2002,p. 39). This is clearly a step forward, but it doesnot fully resolve the underlying tension betweensystem and patient goals. First, because we are nottold how to balance medical outcomes againstquality of life outcomes if they are in conflict.Second, because of the inherent problems inmeasuring quality of life. On closer inspectionmost quality of life scales in use do not measurequality of life as a comprehensive concept but onlyhealth related quality of life, which may or may notmap on to quality of life in general. Given all of theproblems with the evidence-based justification forpatient self-management it is evident that it cannotbe the primary positive justification for promotingself-management. We will therefore have to lookmore closely at the other possible justification.

The second positive justification is patient-centred in that it proceeds from the perspective ofthe patient (the first person perspective) and theassumption that I know things about myself, mylife and my (lived) body that are important when Idecide how to manage my life, and a fortiori when Idecide how to manage my diseased life. Diseaseself-management cannot be divorced from life self-management, and it would indeed be strange to askwhat role I should have in the management of my

own life. The reasonable question seems to be thereverse: who else should have a role in themanagement of my life, and how large should thatrole be. Outside ‘‘interference’’ is what has to bejustified, not self-management.

But let us return to the specific question aboutthe justification of a large role in disease self-management. Why is the knowledge I have aboutmyself, and that I discover about myself during thedisease process important for disease managementand why can it, or a significant part of it only beused in self-management? One part of the answer isthat a large amount of this knowledge is notpropositional knowledge, it is bodily knowledge towhich I respond in bodily ways. I cannot fully statewhat I know about myself in a way that can becommunicated to others. I therefore cannot tell ahealth care professional all I know about myself. Atrivial example of this is that the proposition ‘‘I feeltired’’ is a very poor representation of the manydifferent kinds of tiredness that a person might feel,and that different kinds of tiredness call forthdifferent types of bodily and non-bodily responses.Chemotherapy induced tiredness is qualitativelydifferent from the tiredness caused by a pleasantday walking the moors, and it is a difference that isvery difficult to put into words.

Less trivially we have good reasons to believethat a sharp dichotomy between me and my bodyis untenable. It is not a case that I have a body Ican interrogate and describe as separate frommyself, I am my body and it makes no sense todistinguish between things happening to or in mybody and things happening to me. This has beenargued by people so different as Merleau-Ponty(1962) and Damasio (1996). A framework for self-management placing exclusive emphasis on men-tal concepts like knowledge, belief or attitude istherefore fundamentally misguided, whether ornot these mental concepts are attributed to thepatient or the health care professional.

Another part of the answer is that some of theknowledge that could be made propositional is stillimplicit to me, and that there are no simple ways ofmaking it propositional without either distorting orsimplifying it.

But, could it not be argued that all of thearguments just presented rely on a problematicaccount of knowledge and are vulnerable toversions of Wittgenstein’s famous private languageargument? Well, if all knowledge is propositionalknowledge then the private language argumentmight show that there cannot be any truly privateknowledge to which no one else can get access. Allknowledge would be statable in a public language

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or it would not be knowledge. I think it isquestionable that all knowledge is of a proposi-tional form and language based but that is a matterfor another paper, but even if we accept that allknowledge is propositional, it will not remove thebite of the argument for the importance of the firstperson perspective. First we would merely have toinvent a category for all of those bodily practicesthat are not instinctual, but also not based onknowledge under our new definition, and thesebodily practices would still be important for self-management. Second, it is unclear whether healthcare professionals and patients actually share thesame language, or whether there are insurmount-able translation problems between patient lan-guage and medical language. Denying the existenceof non-propositional knowledge would thereforemerely shift the problematic from one area ofphilosophical analysis to another, without reallysolving it.

In conclusion both non-propositional bodilyknowledge and implicit knowledge is important fordisease management. In many cases I may knowthat something is wrong, or that something haschanged without being able to specify this in anygreater detail, but I may also know that if I docertain things, I will get better. But, could we notargue that the medical and nursing knowledge baseis such an important input into successful diseasemanagement in many circumstances that the rolefor self-management (except for the medicallyknowledgeable patient2) has to be limited even ifwe accept the arguments that have just been made?In certain very complicated situations such anargument is probably valid, but it is important tonote that most situations are not like this, andespecially that even in highly complex cases theremay only be a need for an ‘‘injection’’ of medicalknowledge and management at certain intervals.Few cases outside of the intensive care unit require24/7/365 medical management, and as noted abovewe already now implicitly accept that patients areresponsible for the actual surveillance and imme-diate management of their diseases.

Conclusion

In this paper I have argued that the primaryjustification for promoting patient self-managementmust be that the patient has access to knowledgeand understanding of his or her own situation that isrelevant to successful management of his or herdisease.

In essence we cannot even define successfulmanagement in the individual case without refer-ring to personal understandings of the patient.What may be successful management for me, maynot be successful management for you if we havevery different preferences and life plans, even if wehave ‘‘the same medical condition’’. This personalknowledge does not only impact on ‘‘strategic’’disease management decisions, where they could intheory be communicated to health care profession-als and taken into account by them in theirdecision-making (if we bracket the question ofthe role of tacit and/or bodily knowledge), itimpacts just as much on day to day ‘‘tactical’’disease management which can only be done by thepatient him or herself. The classical conception ofpatient self-management has to be redrawn. Self-management education should not be at the top,and the whole background context of alreadyoccurring self-management should be acknowl-edged.

The DoH should therefore be applauded forwanting to give patients a larger role in diseasemanagement, but should be asked to reconsiderand revise the justification for doing this and askedto change its practical proposals to conform to therevised justification.

Notes

1. In this paper I will use patient in the sense of ‘‘patientwho has had a chronic disease for a considerable time’’.I make no claims concerning the validity of the

arguments for patients with acute conditions.2. Although this is not part of my main argument for the

importance of recognising disease self-management we

should not forget that many patients do actually becomemedically knowledgeable during their patient career.

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