Re: Should the skeleton of “the Irish giant” be buried at sea?. Len Doyal, Thomas Muinzer. 343:doi:10.1136/bmj.d7597

The recommendation by Doyal and Muinzer that the Royal College of Surgeons and the Board of Trustees of the Hunterian Collection dispose of the skeleton of Charles Byrne is an articulate contribution to the on-going ethical discussion around the retention of historic human remains (1,2), the majority of which were acquired in ways that would not satisfy twenty-first-century ethical standards. Although the historical evidence is not clear-cut – relying on newspapers and a third-hand account (3) – it is likely, because of the associated stigma, that Byrne was uncomfortable at the prospect of dissection. Having inherited custody of the remains, and there being no legal case to answer, the Board and College have again considered the moral case by comparing any benefit of destructive disposal with the value of retention.

A vivid demonstration of the latter can be found in the outcomes of the research into Familial Isolated Pituitary Adenoma (4) which sparked the authors’ interest in this case. The authors’ suggestion that all possible scientific benefit has been gleaned is not shared by researchers in relevant fields. Benefits include not only tangible clinical outcomes but also the identification of shared genes between Byrne and living communities. Among these are individuals who live with the same condition, who have requested that the skeleton should remain on display. Given their shared ancestry with Byrne, particular credence has been given to these individuals’ wishes.

The authors recommend that the skeleton be removed from publicly accessible display and replaced with a replica. This would deny the Hunterian Museum’s inclusive audiences the experience of studying the authentic remains as part of a coherent historical collection, in the present dignified and informative context (in which Byrne’s likely discomfort is openly acknowledged).

Doyal and Muinzer’s case is compelling. So too, however, is the argument that in accordance with the wishes of genetically connected individuals, Charles Byrne’s remains be retained to advance our understanding of rare conditions and to benefit contemporary communities. In full compliance with the College’s Acquisition and Disposal Policy the skeleton will therefore remain on display. New historical evidence, legislation or research outcomes will of course be monitored.

References

1. Jones DG and Whitaker MI. Speaking for the dead: The human body in biology and medicine. 2nd ed. 2009. Farnham: Ashgate.

2. Alberti SJMM, Bienkowski B, Chapman MJ, and Drew R. Should we display the dead? Museum and Society. 2009; 7 (3): 133-149.

3. Taylor, T. Leicester Square; its associations and its worthies. 1874. London: Bickers.

4. Chahal H, Stals K, Unterländer M, Balding DJ, Thomas MG, Kumar AV, et al. AIP mutation in pituitary adenomas in the 18th century and today. N Engl J Med 2011;364:43-50.

Competing interests: None declared

Re: Shared decision making: really putting patients at the centre of healthcare. A M Stiggelbout, T Van der Weijden, M P T De Wit, D Frosch, F Légaré, et al. 344:doi:10.1136/bmj.e256

Sir,

We would all agree that patients should receive information about their disease and its management. And, of course, they should decide whether or not they want to have a particular treatment. But, equally, we must be honest about the limitations to meeting these requirements.

At a time of serious financial constraints on the NHS, Stiggelbout et al. [1] enthusiastically promote shared decision making. Whilst they may wonder whether this will have resource implications, most of us could answer this question a priori. We do not need research to tell us that it will be time consuming and labour intensive; and that it will place a further burden on doctors or, alternatively, require armies of newly created experts – fresh from their weekend course in shared decision making – to be dispersed around the country extolling the virtues of their practice with missionary zeal. However, there are far more legitimate demands on shrinking budgets than shared decision making.

But what’s it all for? The authors concede that there is only limited evidence that shared decision making improves health outcomes. Instead, their case seems to rest on the somewhat dubious mixture of ethical considerations interspersed with claims of possible reductions in health care expenditure.

In any case, the current approach to shared decision making is simply pretence. In order to participate genuinely in their management, patients need to know much more than just the proportion of differently coloured, smiling faces on decision aids. Setting aside the education and experience necessary to cope with complex medical situations, the much touted graphical displays relating to the outcome of treatment focus solely on the numerical issues involved in understanding – an important aspect but only a fraction of what is required to appreciate the nature of the data. Surely patients should be told, for example, of the flaws in the research methods, of the influence of those with a vested interest in the outcome of the studies, of the data manipulation by researchers or policy-makers in order to present their case in the most favourable light, and of the possibility of fraud. [2]

Patient must also be informed that doctors and others who dispense information are not free from bias – for instance, there are financial incentives to diagnose and treat hypertension and raised cholesterol. And we need look no further than the patient booklets relating to breast and colorectal cancer screening to see how easy it is to mislead patients.

We must not fool ourselves into believing that what is proposed is tantamount to real shared decision making. It is, and probably will always be, lacking in too much to justify such a claim.

James Penston

james.penston@nhs.net

References

1. Stiggelbout AM, Van der Weijden T, De Wit MPT, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344;e256.

2. Penston J. Stats.con – How we’ve been fooled by statistics-based research in medicine. The London Press. London, November 2010.

Competing interests: None declared

Re: Shared decision making: really putting patients at the centre of healthcare. A M Stiggelbout, T Van der Weijden, M P T De Wit, D Frosch, F Légaré, et al. 344:doi:10.1136/bmj.e256

In his critique of Stiggelbout et al. for their article on shared decision making (1),(2), James Penston chides the authors for their overzealous attitude and endorsement of shared decision making within the clinical context.

His chastisement of the authors appears to be motivated by concerns revolving around the present financial state of the NHS.

While Penston deserves credit for being first to raise a baton in defense of the NHS, his statement that "their case seems to rest on the somewhat dubious mixture of ethical considerations interspersed with claims of possible reduction in healthcare expenditure" (2) should be brought to account.

Why should we look askance at ethical considerations but not at finances? Are NHS doctors not confronted daily with ethical dilemmas?

We are no longer in the Dark Ages. It is imperative that a physician balances self-interest not just against cost, but also against ethical aspirations and the interests of the patient. Ethical issues and cost-effective health care ought not to be mutually exclusive. (3), (4)

Andem Effiong

References

1. Stiggelbout AM, Van der Weijden T, De Wit MPT, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344;e256.

2. Penston J. Is real shared decision making possible? Re: BMJ 2012; 344;e256.

3. Maynard A. Is doctors’ self interest undermining the NHS. BMJ 2007; 334:234.

4. Pellegrino, ED. Altruism, Self-interest, and Medical Ethics. JAMA.1987;258(14):1939-1940

Competing interests: None declared

Re: Effectiveness of vaccine against pandemic influenza A/H1N1 among people with underlying chronic diseases: cohort study, Denmark, 2009-10. Hanne-Dorthe Emborg, Tyra Grove Krause, Anders Hviid, Jacob Simonsen, Kåre Mølbak. 344:doi:10.1136/bmj.d7901

Why so little comment about the Danish study of flu vaccine effectiveness in people with chronic diseases? At best the pandemic vaccine was only 49% effective in preventing lab-confirmed disease from pH1N1 after 14 days, and in the first week after vaccination it nearly quadrupled the associated risk of being hospitalized with pH1N1! Furthermore, prior receipt of seasonal flu vaccine alone nearly tripled the associated risk of hospitalization with pH1N1!

This was a large study in an integrated health system that efficiently linked vaccination with outcomes and effectively overcame selection bias. It should prompt us to reconsider national flu vaccination programs, but no one is talking.

Were the authors' conclusions too understated? Have we been distracted by the laboratory bird flu flap? Has the current flu season thus far been mild enough to quiet our passions?

Competing interests: None declared