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Medicine’s Missing Foundation for Health Care Reform: Part 5 – Patient Autonomy

   What is the role of patients in this new environment?  Some useful historical background is provided by Paul Starr.  Comparing attitudes towards advances in medical science during the Jacksonian and Progressive periods, Starr has written:

In each period, the continuing, unresolved tensions between the nation’s democratic culture and its capitalist economy became particularly acute.  Both the Jacksonians and Progressives esteemed science, but they understood it in different ways.  The Jacksonians saw science as knowledge that could be widely and easily diffused, while the Progressives were reconciled to its complexity and inaccessibility.53

The outcome in the 20th Century was that “American faith in democratic simplicity and common sense yielded to a celebration of science and efficiency.”54  This involved acceptance of professional authority, a “retreat from private judgment” and a “general decline of confidence in the ability of laymen to deal with their own physical and personal problems.”55  Patients thus became increasingly dependent on licensed, expert professionals for information, judgment and skillful performance.

   Now, with the Internet, patients have become less dependent on experts for information and judgment.  Simultaneously, new technologies are lessening patient dependence on experts for performance of some medical procedures, because simple devices for diagnostic testing and monitoring are increasingly becoming available to patients.  But these devices generate detailed data that must become part of the medical record.  The record must be organized for use by the patient and multiple caregivers.   And data must be selected and analyzed in light of medical knowledge. If these problems in managing clinical information can be solved with effective tools and standards of care, then patient autonomy and independence from expert practitioners can increase by an order of magnitude.  The extent to which this new independence occurs remains to be seen.

   The patient role might evolve in either of two directions.  First, providers could become better organized to deliver patient-centered care through some form of “medical home.”  Medical homes would have responsibility for delivering and coordinating care for defined populations.  Patients would use information tools but still depend on practitioners for guidance in decision making and for coordination of care.  Information tools would reduce but not remove the information asymmetry between patients and practitioners, under this scenario, because the tools could only capture formal, explicit knowledge from medical science, not informal, tacit knowledge from concrete experience in medical practice.  Unlike patients, practitioners accumulate experiences with multiple patients encountering a given disease condition and the processes of care for that condition.  Thus patients would naturally turn to the judgments of veteran practitioners, who could draw on their past experience in navigating the processes of care on behalf of multiple similar patients.  On this view, the insight conferred by that past experience is a form of medical expertise above and beyond any specific skills in performing medical procedures.  (Indeed, the market for that expertise might constitute a new definition for primary care.)  Thus, under this scenario, patients are dependent recipients of care chosen under the guidance of the experts who provide it.

   The other direction in which the patient role might evolve would involve a basic shift of responsibility for going through the decision making process from providers to patients.  Under this scenario, patients are autonomous users of a total system of care that provides resources, experts and accountability.  Rather than being dependent on expert providers for information or judgment, patients employ expert providers when needed for delivery of specific services.  Autonomy in this scenario does not mean that patients make difficult medical decisions on their own, without involvement of others, nor does it mean that patients decide among alternatives determined by experts.  Rather, as in other areas of their lives, patients may exercise private judgment after turning to (or being confronted by) trusted parties who provide dialogue, guidance, feedback and emotional support.

   In doing so, patients would have available a transparent, orderly, reliable system of care, they would be responsible for using it, and they would be accountable for the choices and behaviors their use of the system reflects.  This second scenario is a return to the Jacksonian vision of medical science as “knowledge that could be widely and easily diffused.”  In contrast, the first scenario is rooted in the Progressive vision of medical science as too complex and inaccessible to employed without expert guidance.

   This second scenario is most applicable to chronic disease, where the economic burdens of health care are concentrated.  Imagine the patient as the driver of a car (to borrow an analogy from Norbert Wiener, who used it to illustrate the importance of feedback in complex behaviors).  No one can drive a car blindfolded by listening to directions from a passenger.  This is so even if the passenger is more knowledgeable about driving the particular vehicle or navigating the particular route.  That expertise in the passenger is no substitute for the driver’s personally receiving and responding to visual feedback while driving.  So it is in the care of chronic disease.  There can be no substitute for the patient’s taking on the responsibility to exercise private judgment.  That is, the patient must personally learn about his or her condition, consider the pros and cons of therapeutic alternatives (including personal behavior changes), choose among those alternatives in light of personal values and circumstances, act on the choice, get feedback on the results and make corrective adjustments over time.

   The patient with chronic disease cannot escape this role, for two fundamental reasons.  First, the patient, not the expert caregiver, is the one who must live with the choices made, and the patient is the one who must summon the resolve to make the behavior changes those choices may entail.  Even if a medical expert would arrive at the same choices as a well-informed patient, the patient’s relying on another to make those choices detracts from the personal involvement and commitment essential to coping with chronic disease.  Depending on another for inherently personal decision making saps motivation and self-respect.  And this dependency state shifts decision making authority away from the person, who is, in Hayek’s terms, “closest to the subject matter of the decision,” with “intimate knowledge” of the disease as uniquely experienced by that individual.

   The patient’s intimate knowledge of his or her own chronic disease is the second reason why the patient cannot escape responsibility for decision making.  The course of a chronic disease depends on numerous variables, none of which the caregiver personally experiences, most of which the caregiver does not control and some of which the caregiver is not aware.  In diabetes, for example, blood glucose levels depend on not only insulin levels but also diet, exercise, emotion, medications, infections and co-existing medical problems, among other variables.  The patient has more knowledge and control of many of these variables than the provider ever will.  Managing chronic conditions demands keeping track of these variables over time and examining them for medically significant patterns and relationships.  The provider’s expertise is limited to textbook generalizations and limited personal experience
with other patients, neither of which is sufficient to cope with detailed data and arrive at individualized decisions for the patient at hand.  Those decisions require expertise that resides only in that patient, feedback that only the patient can recognize and act on, and external tools that the patient has more time and incentive to carefully use than the provider ever will.  The patient feels what the disease and its treatments do to him or her, and can rapidly recognize correlations between those subjective symptoms and detailed data on physiological parameters.  Without any formal education, the patient is in the best position to observe these correlations.  What the patient needs beyond this personal knowledge is not the broad, sophisticated scientific understanding of a physician but rather a basic understanding of principles and data that bear specifically on choosing among the options relevant to his or her situation.  To that extent, information asymmetry exists in favor of the patient, not the expert provider.56

   For patients to acquire the necessary understanding of their chronic conditions, decision making processes must move from Karl Popper’s World 2 to World 3, from personal recall, knowledge and judgment to highly organized records, including graphs and flowsheets for organizing objective data, plus decision support tools that bring objective knowledge to bear on this data in a usable manner, all in the hands of patients as well as providers.  Patients themselves can use decision support tools to identify options and evidence.  They can use medical records to discern their own unique patterns of response, to see what works and what doesn’t work.  And others can use these records to confront irresponsible patients with feedback on the medical consequences of their own actions or inaction.57 External tools in World 3 thus provide concrete instruments for capitalizing upon the personal knowledge and motivation of patients, very much as the price system in a market economy capitalizes upon the personal knowledge and motivation of market participants.

   Consumers would naturally use the system of care in World 3, not expert caregivers in World 2, as the primary source of information for decision making.  The question remains, however—where do people turn for outside guidance and judgment?  Most people do not make important personal decisions based on purely private judgment.  Most people form judgments about their own needs based in part on dialogue with others.  But there is no reason for patients necessarily to choose medical experts for that dialogue.  Not all experts have the interpersonal skills or temperament to play that role effectively.  Nor do they often have a sufficiently close personal relationship with patients.  In many situations, the best source of guidance, feedback and emotional support may be other patients who are available in online communities oriented to particular diseases.

   As between the two scenarios outlined above, the first scenario is more compatible with the current medical culture, rooted in World 2.  But the second scenario is more compatible with the movement to World 3 made possible by modern information technology.  For that movement to be completed, the educational system will need to change.  If patient-consumers are to apply medical knowledge to their own medical data to manage their own health, then they as well as their caregivers need medical education.   But for consumers, medical education needs to begin in childhood.

   Every child has a natural interest in the workings of his or her own body and mind.  Every child personally experiences health care and the health care system.  Education designed to explore that personal interest and experience could involve learning by doing and learning from personal experience—elements that traditional education usually lacks.

   From their education consumers need to learn the principles, skills and attitudes required for maintenance of personal health, coping with health problems, using information tools and taking responsibility for medical decisions and health behaviors.  They need to learn about their own biological uniqueness and why it means they must take responsibility for their own health behaviors and their own care.  They need to learn why their uniqueness precludes relying uncritically on established medical knowledge, or accepting the marketing pitches of vendors, or becoming dependent on physicians to make inherently personal decisions for them.  They need to learn to interact with the health care system autonomously very much as they learn to navigate the transportation system.  They need to access and understand their own medical records, and to use software tools for applying medical knowledge to their own data.

   Consumers and caregivers alike face a medical culture not unlike the intellectual culture faced by Francis Bacon 400 years ago.  As described by Loren Eiseley, Bacon had to overcome an entrenched and stifling world view:  “The real problem was to break with the dead hand of the traditional past, to free latent intellectual talent, to arrest and touch with hope the popular mind, to carry word of that which lay beyond the scope of the isolated individual thinker …”58  So we in medicine now must break with our past, if we are ever to control our own future.

Disclosure:  The corresponding author is the founder and a major shareholder in PKC Corporation (www.pkc.com), which develops and markets one of the information tools (knowledge coupling software) discussed in this article.  The other author is the son of the corresponding author.

Endnotes:

 The corresponding author is the original developer of these standards and tools, which are briefly described in part II.C below and presented in detail elsewhere, most recently in an unpublished manuscript entitled Medicine in Denial, which will be available on the Web in the near future.  

The manuscript cited in note 1 above includes references to numerous prior publications.

Bacon F.  Novum Organon (1620), Summary of the Second Part, Aphorisms Concerning the Interpretation of Nature and the Kingdom of Man, Aphorism No. 31 (Montague, trans., 1854); at http://history.hanover.edu/texts/Bacon/APHOR.html.  

NIH Working Group on Biomedical Computing, The Biomedical Information Science and Technology Initiative.  1999.  Available at http://www.nih.gov/about/director/060399.htm.  

Whitehead A. An Introduction to Mathematics, 1911 (American ed., Oxford Univ. Press, 1948, p. 83).  

Ibid., pp. 39-42.

Edward Gibbon, The History of the Decline and Fall of the Roman Empire, ch. IX; (Paris: Baudry’s European Library, 1840) , p. 200; available at http://books.google.com.

Grove W, Meehl P. Comparative efficiency of informal (subjective, impressionistic) and formal (mechanical, algorithmic) prediction procedures: the clinical-statistical controversy. Psychology, Public Policy and Law 1996; 2:293-323, p. 316, available at  http://www.tc.umn.edu/~pemeehl/167GroveMeehlClinstix.pdf.

 9 Ibid.

10  Popper, K.  Objective Knowledge:  An Evolutionary Approach.  Oxford:  Clarendon Press, 1972 (pp. 72, 106). 

11  Ibid., p. 108 (emphasis in original). 

12  Bacon F.  Novum Organon (1620), note 3 above, Aphorisms No. 2, No. 9.

13  Bacon F.  Novum Organon (1620), note 3 above, Aphorism No. 36.

14 Gaukroger S.  Francis Bacon and the Transformation of Early Modern Philosophy.  Cambridge University Press, 2001 (pp.10, 14-18); Kors A.  “The New Vision of Francis Bacon,” in Lecture 3 in The Birth of the Modern Mind:  The Intellectual History of the 17th and 18th Centuries (recorded lectures from The Teaching Company).

15  Bacon F.  Novum Organon (1620), note 3 above, Aphorisms No. 42-44.

16  Bacon F.  Novum Organon (1620), Preface to Second Part, note 3 above.

17  A popular exposition of this research is Gladwell, M.  Blink (New York:  Little Brown and Co., 2005).

18  Grove and Meehl, note 8 above.

19  Dawes R.  Rational Choice in an Uncertain World (New York:  Harcourt Brace Jovanovich, Inc. 1988), p. 143.

20  Berg M.  Rationalizing Medical Work. Cambridge, MA:  MIT Press, 1997.

21  Ibid., p. 7.

22  Institute of Medicine, To Err is Human (Washington, National Academy Press, 1999). p. 47 (“This report addresses primarily … errors of execution,” as distinguished from “errors of planning”).

23  C.C. Weed.  The Philosophy, Use and Interpretation of Knowledge Couplers, PKC Corporation, 1982-2008 (p. 1), available at www.pkc.com.

24  Bacon F.  Novum Organon (1620), note 3 above, Aphorism No. 47.

25  Friedman M., Kuznets, S.  Income from Independent Professional Practice, 1929-1936 (National Bureau of Economic Research, 1954) (originally published in 1939), available at http://www.nber.org/books/frie54-1; Friedman, M.  Capitalism and Freedom (Chicago:  University of Chicago Press, 1962), pp. 137-60; Svorny S., Medical Licensing:  An Obstacle to Affordable, Quality Care, Cato Institute Policy Analysis No. 621, Sep. 17, 2008, available at http://www.cato.org/pubs/pas/pa-621.pdf; Kling A, Cannon M., Does the Doctor Need a Boss?, Cato Institute Briefing Paper No. 111, Jan. 13, 2009, available at http://www.cato.org/pubs/bp/bp111.pdf.  

26  Dawes R.  Rational Choice in an Uncertain World (New York:  Harcourt Brace Jovanovich, Inc. 1988), p. 208.

27  Ibid., p. 143 (emphasis in original).

28  Blumgart H., “Medicine:  The Art and the Science,” Hippocrates Revisited, R. Bulger ed. (New York:  MEDCOM Press, 1973), p. 34.

29  Nuland, S.  How We Die: Reflections on Life’s Final Chapter (New York: Alfred A. Knopf, 1994), pp. 248-49.

30  Sowell T.  Knowledge and Decisions.  New York:  Basic Books, 1980, p. 26.  

31  F.A. Hayek, “The Use of Knowledge in Society,” American Economic Review, XXXV, No. 4, Sep. 1945, pp. 519-30 at p. 525 (emphasis added).

32  Ibid. at 22.

33  Ibid. at 18.

34  Arrow K.  Uncertainty and the Welfare Economics of Medical Care.  American Economic Review.  1963.  LIII:941-73.  For further discussion of Arrow’s classic article in relation to Thomas Sowell’s analysis of knowledge and decision making, see , Part IV.B (pp. 5-8) of Weed LL, Weed L.  Opening the black box of clinical judgment, British Medical Journal, eBMJ Edition, Vol 319, issue 7220, 13 November 1999, available at http://bmj.bmjjournals.com/cgi/content/full/319/7220/1279/DC2.  

35  Specific tools and standards of care for these purposes are described in parts IV and VI of the manuscript cited in note 1, as well as numerous prior publications cited therein.  These tools and standards have been used in clinical practice for many years.

36  Herzlinger, R.  Who Killed Health Care:  America’s $2 Trillion Health Problem and the Consumer-Driven Cure (New York:  McGraw Hill, 2007), p. 185. 

  37  Knowledge and Decisions, note 30 above, pp. 10-11.

38  IOM, Crossing the Quality Chasm (Washington, National Academies Press, 2001), Appendix B, Paul Plsek, “Redesigning Health Care with Insights from the Science of Complex Adaptive Systems,” pp. 326, 329. 

39  IOM, Crossing the Quality Chasm, p. 69.  

40  http://en.wikipedia.org/wiki/Double_entry_bookkeeping.

41  A company founded by the corresponding author, PKC Corporation, has developed “knowledge coupling software designed to implement this standard of care.  See www.pkc.com.

42  The corresponding author originated the problem-oriented medical record standard.  

43  Schattner A.  “Simple Is Beautiful:  The Neglected Power of Simple Tests.”  Arch Intern Med 164: 2198-2200 at 2199 (Nov. 8, 2004).  

44 Groopman, J.  How Doctors Think (New York: Houghton Mifflin, 2007), pp. 193-94.

45  Mendelson M., Murray, P.  Towards the appropriate use of diagnostic imaging, Medical Journal of Australia 2007; 187 (1): 5-6.  See  http://www.mja.com.au/public/issues/187_01_020707/men10331_fm.html.  

46  Gottlieb, S.  Opening Pandora’s Pillbox:  Using Modern Information Tools To Improve Drug Safety.  Health Affairs, July/August 2005.  DOI 10.1377/hlthaff.24.4.938, pp. 938.  

47  Schattner, A.  “Clinical paradigms revisited,” Medical Journal of Australia, 2006; 185 (5): 273-275, available at http://www.mja.com.au/public/issues/185_05_040906/sch10143_fm.html.  See also Dr. Schattner’s response to letters to the editor, criticizing “imaging without forethought.”  Ibid, 2006; 185 (11/12): 671-672 [Letters], available at  http://www.mja.com.au/public/issues/185_11_041206/arn11029_letters_fm-2.html.  It is remarkable that these issues are still the subject of debate.   

48  Weed CC.  “Overview,” in Weed LL., et al., Knowledge Coupling: New Premises and New Tools for Medical Care and Education, New York: Springer-Verlag, 1991, pp. xviii-xix. 

49  Groopman, J., How Doctors Think, note 44 above, p. 228.  Jauhar, S., “Many Doctors, Many Tests, No Rhyme or Reason,” The New York Times, March 11, 2008.  Dr. Jauhar’s essay generated remarkable commentary from many readers, both patients and caregivers, who further described the lack of “rhyme or reason” in medical services.  See  http://community.nytimes.com/article/comments/2008/03/11/health/views/11essa.html?s=1&pg=1.

50  Congressional Budget Office.  The Long-Term Outlook for Health Care Spending, March 2008, p. 6. 

51  Bacon, F.  The Advancement of Learning, IX(1), at http://www.fullbooks.com/The-Advancement-of-Learning2.html 

52  Heng, H.  The Conflict Between Complex Systems and Reductionism, JAMA 300;13: 1580-1581 (Oct. 1, 2008).  See also Wade N., A Dissenting Voice as the Genome is Sifted to Fight Disease, New York Times, Sep. 16, 2008, which states:  “the effort to nail down the genetics of most common diseases is not working. …  The common disease/common [genetic] variant idea is largely wrong.  What has happened is that a multitude of rare variants lie at the root of most common diseases ….”

53  Starr P., The Social Transformation of American Medicine (New York: Basic Books, 1982), p. 140. 

54  Ibid. 

55  Ibid., p.  141. 

56  For more detailed discussion of the patient’s central role, see Weed, LL, “Introduction: Scientific principles that tell us why people must manage their own health care,” in Your Health Care and How To Manage It (Essex Junction, VT:  Essex Publishing Co., Inc., 1975); Weed LL., et al., Knowledge Coupling, note 48 above; Part II of Weed LL, Weed L.  Opening the black box of clinical judgment, British Medical Journal, eBMJ Edition, Vol. 319, issue 7220, 13 November 1999, available at http://bmj.bmjjournals.com/cgi/content/full/319/7220/1279/DC2

57  For two examples of this kind of interaction using problem-oriented medical records, see Dr. Ken Bartholomew’s descriptions in Knowledge Coupling (cited in the preceding note), p. 265.  

58  Eisely, L., Francis Bacon and the Modern Dilemma (Lincoln: University of Nebraska Press 1962), p. 22.

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