Three references and a suggestion

Why stay in prison? Its gates have always been open!

CRB Joyce, PhD

Mapi, founded in 1974, saw the importance of including the study of Health-Related Quality of Life (HRQL) in the scientific evaluation of medical and other treatments, and in 1991 began to publish the Quality of Life Newsletter (QoL NL). In 2014 the Mapi Group celebrates, in addition to the fortieth of its own foundation, the tenth anniversary of a change in the title of the QoL-NL to the Patient-Reported Outcomes Newsletter (PRO NL). During the intervening period, there had been a tendency to submerge the concept of HRQL at increasing depths of nomenclature,2,3 although the importance of the individual patient herself was not neglected.
The difficulties created by the evolution of this paradox have sometimes appeared more concerned with epistemology than methodology. The many revisions sanctioned by the FDA3 were partly—or, some may feel, largely—driven by the difficulty of defining HRQL in a consistent way.

Opinions about HRQL are the product of patients, not psychopharmacologists, biochemists, politicians or, until now, neuroscientists, but so far it has not been possible to study them directly. Even if “HRQL is what the patient says it is,” or more relevantly but less hopefully, “What she tells herself it is,” these far from hypothetical statements depend upon many factors, such as enjoyment of a good Christmas pudding, attitude to intercessory prayer and love, to name only three among myriads. Can the experience one Sunday morning of an elderly subject with indigestion caused by a heavy breakfast whose motor-car, having broken down on the way to church (where he was bored by a rambling sermon) is restarted by a passer-by be added to that of the next Sunday when he stayed in bed all day, watching so-called “reality” television? Is it not totally impossible to add any of this to the longer-lasting experiences of countless other people who simply “enjoy poor health”? Can inconstant, incoherent, and often self-contradicting values, sometimes referred to as state, trait, and fate HRQL4, be summed over person, time, or life in any meaningful way?

And while a great deal of attention to the individual’s voice in drug development has indeed been achieved, whatever the means to do so are called,3 studies of the quality of life (QoL) of Planet Earth as a whole, especially the major issues of their co-ordination, have been largely neglected.
A review by Gordon Wood in the New York Review of Books (NYRB)5 about a close textual analysis by Danielle Allen of the Declaration of Independence6 and the discussion of the growing Homni phenomenon by Gaia (in nomen omen) Vince7 on BBC News TV are worth considering in this regard. All seem to have taken the importance of QoL for granted without insisting upon the term itself. According to Wood’s reading of Allen, the fundamental purpose of the Declaration was to guarantee a consistent, verifiable definition of equality to each and every member of the society that had given birth to it. It was in this spirit that the Union had been founded and in which it was to continue. The Founding Fathers did not insist that other countries should follow this example. The insistent growth of American influence has given rise to certain counter-productive interpretations.

For Allen,6 a stable definition of QoL has already been achieved, but for Vince7 Humanity as a whole is still moving towards the real integration that will make its survival possible. Each idea offers a path towards a future that seems unattainable now, bleak though it is and may be more so when to-morrow becomes to-day. Not still more unavailing argument about definitions of QoL but the urgent implementation of a comprehensive, efficient system of safeguarding it is essential to saving humanity and the planet or its surviving inhabitants. As Kierkegaard insisted a long time ago: “What must get clear about is what need to do, not what need to know.”8 Tolstoy, who among many others had enquired “What then is to be done?”,9 offered many answers, most of which could be subsumed under a single religious heading agreeable to an energetic but dwindling group today.

Another suggestion of Kierkegaard’s is still relevant and revolutionary: “Freedom’s potential is not the ability to choose the good or the evil. The potential lies in having the ability” (emphasis added).8 The QoL of Planet Earth as of all of us, its inhabitants, depends upon action not knowledge, of which there is perhaps already a sufficiency: overlapping, redundant, sometimes internecine and usually ill- or un-coordinated. The big nations, big places, and big names have for years voiced anxiety about the need for action but have produced little in the way of action itself. An interesting attempt, initiated and led by the United Nations,10 was the Millenial Global Developments Project, but its evaluation as the final target date (2015) approaches, is already the subject of widely conflicting opinions.

Another example is the so-called Copenhagen Consensus, described in an excited, exciting (and excitable) TED talk by Lomberg.11 Where should we look for ability to enact what needs to be done? Better, perhaps, to start elsewhere; for example, in a group of nationals from small countries considered to have the nearest to impeccable records in helping other nations than their own (or themselves).

Simon Anholt’s reputably constructed and carefully described Good Country Index12 looks like a starting point that might prove to be more stimulating and efficient. It ranks nations in terms of demonstrable good that they have done for others rather than for themselves. Its first leader is Ireland, with Finland a very close second.
Bhutan, which in 1999 decided to replace GDP by GNH (Gross National Happiness) as a more meaningful measure,13 might well be invited to produce an initial plan of action that could perhaps be joined, as other continental representatives, by Singapore, Kenya, Costa Rica, and New Zealand for different (and, of course, arguable) reasons.
Why stay in prison? Its gates have always been open!1
(the verdict – guilty – stands…)

Suggestion: Read references 12, 13, and 1.

1. Barks C (2005). Rumi: The Book of Love: Poems of Ecstasy and Longing. New York: HarperOne, p xxv.
2. Notices. Federal Register 2011;76,145.
3. Patrick DL, Acquadro C (2014). Focus on the Patient: The Evolving Taxonomy of Clinical Outcome Assessments. PRO Newsletter 52:3-5.
4. Joyce CRB (1999). Is God a Placebo? In Schmidt J.(ed) Proc 3rd Einsiedeln Symposium. Res Comp Med;5(S1)102-111.
5. Gordon S. Wood (2014). A Different Idea of Our Declaration. NYRB LXI , 13, 37-38.
6. Danielle Allen (2014). Our Declaration: A Reading of the Declaration of Independence in Defense of Equality. New York, Liveright, pp. 315.
7. Gaia Vince (2014). Homni: The new superorganism taking over Earth. http://www.bbc.com/future/story/20140701-the-superorganism-engulfing-earth. Retrieved 02.08.14.
8. Soren Kierkegaard (1844). The Concept of Anxiety (1844). trs. Alastair Hannay p.49 (2014). New York: Kirkus Reviews
9. L. Tolstoy (1886) What then must we do? trs. Aylmer Maude (1935). Oxford: The World’s Classics.
10. United Nations (2013) The Millennium Development Report (2013). New York: UNDP. http://www.un.org/millenniumgoals/pdf/report-2013/mdg-report-2013-english.pdf. Retrieved 26.08.14.
11. Bjorn Lomberg (2005). Priorities bigger than climate change. http://www.ted.com/talks/bjorn_lomborg_sets_global_priorities. Retrieved 10.08.14.
12. Anholt (2014). Which Country Does Most Good for the World? http://www.ted.com/talks/simon_anholt_which_country_does_the_most_good_for_the_world. Retrieved 09.08.14.
13. Sonam Kinga, Karma Galay, Phuntsho Rapten and Adam Pain (eds.) (1999). Gross National Happiness: A Set of Discussion papers. Thimphu, Bhutan: The Centre for Bhutan Studies.