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displaced people exposed to the pathogenic effects of war, nor for the brave military personnel who are asked to participate in building a war machine that might later hurt them. The adverse effects of displacement alone on psychological wellbeing is well documented.10,11 Refugees lose their place, and along with it parts of their identity, status, meaning, and capacity to support themselves and their families.12,13 Countries such as Vietnam and Iraq have lost some of their best and brightest, who nonetheless have a major struggle to realise their full potential in their new domiciles. The world loses culture when dominant countries export their views and countries lose historical artifacts, highlighted recently by the destruction of ancient sites in Iraq.14 The economic cost to individuals and societies is staggering and immeasurable. Although the resiliency of refugees needs to be validated, more prevention and treatment are also urgently needed. A minority of the 3–4 million refugees with psychiatric disorders in the west can access care, and the percentage of internally displaced people who are served is probably even less. The social and economic burden for countries that have refugees is overwhelming. Sadly, much of this illness and distress is preventable. We could work with more resolve to prevent the harms of war. If we do not have the capacity to prevent war, we have a collective responsibility to better understand and treat its psychiatric, medical, and social consequences. Michael Hollifield
University of Louisville Department of Psychiatry and Behavioral Sciences, Med Center One, Louisville, KY 40202, USA m.hollifi
[email protected] I declare that I have no conflict of interest. 1 2
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Hollifield M, Warner TD, Lian N, et al. Measuring trauma and health status in refugees: a critical review. JAMA 2002; 288: 611–21. deGirolamo GD, McFarlane AC. The epidemiology of PTSD: a comprehensive review of the international literature. In: Marsella A, Friedman M, Gerrity E, Scurfield R, eds. Ethnocultural aspects of posttraumatic stress disorder. Washington DC: American Psychological Association, 1996. Basoglu M, Paker M, Ozmen E, Tasdemir O, Sahin D. Factors related to long-term traumatic stress responses in survivors of torture in Turkey. JAMA 1994; 272: 357–63. Silove D, Steel Z, McGorry P, Mohan P. Trauma exposure, postmigration stressors, and symptoms of anxiety, depression and post-traumatic stress in Tamil asylum-seekers: comparison with refugees and immigrants. Acta Psychiatr Scand 1998; 97: 175–81. Antonovsky A. Unraveling the mystery of health. San Francisco: Jossey-Bass, 1987. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. Am J Prev Med 1998; 14: 245–58. USCR. World refugee survey 2002. Washington, DC: United States Committee on Refugees, 2002. Steel Z, Silove D, Phan T, Bauman A. Long-term effect of psychological trauma on the mental health of Vietnamese refugees resettled in Australia: a population-based study. Lancet 2002; 360: 1056–62. Gavagan T, Brodyaga L. Medical care for immigrants and refugees. Am Fam Physician 1998; 57: 1061–68. Desjarlais R, Eisenberg L, Good G, Kleinman A; eds. World mental health problems, priorities, and responses in low-income countries. New York: Oxford University Press, 1995. Steel Z, Silove D, Bird K, McGorry P, Mohan P. Pathways from war trauma to posttraumatic stress symptoms among Tamil asylum seekers, refugees, and immigrants. J Trauma Stress 1999; 12: 421–35. Fullilove MT. Psychiatric Implications of displacement: contributions from the psychology of place. Am J Psychiatry 1996; 153: 1516–23. Palinkas LA, Pickwell SM. Acculturation as a risk factor for chronic disease among Cambodian refugees in the United States. Soc Sci Med 1995; 40: 1643–53. National Geographic News. Ancient Iraqi sites show theft, destruction. June 11, 2003: http://news.nationalgeographic.com/news/2003/06/ 0611_030611_iraqlooting.html (accessed Jan 15, 2005).
Control of suffering on the slippery slope of care See Articles page 1315 See Research Letters page 1329
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What leads us to change our minds?1 Reading the two reports in today’s Lancet by Veerle Provoost and Astrid Vrakking and their respective colleagues in Belgium and the Netherlands about decisions on end-of-life care for infants, I wondered what if anything their information should do to my views about euthanasia. The findings from the two studies largely corroborate each other, albeit with slightly different evidence and emphasis. The survey of Flemish physicians who supervised the care of infants who died during 1999 and 2000 estimated that 57% of deaths were preceded by an end-of-life decision. These decisions involved withdrawing (21%)
or withholding (13%) treatment, administering drugs to alleviate pain in doses that might have shortened lifespan (16%), and purposefully administering a lethal dose of a drug (7%). When the physicians in this survey were questioned on their attitudes about the care of critically ill and dying infants, 68% affirmed that they would be willing to shorten the duration of terminal suffering of a neonate by using lethal drugs, and 88% agreed that considerations about a newborn infant’s expected quality of life can be taken into account in therapeutic decision-making. The study of Dutch physicians who had cared for dying infants in 2001 www.thelancet.com Vol 365 April 9, 2005
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revealed that, compared with a similar survey in 1995, little had changed: a slightly increased proportion of deaths (68% vs 62%) were preceded by some acknowledged end-of-life decision, mostly decisions to withhold or withdraw life-support. In both years, 8% of deaths involved euthanasia of infants who were having life-sustaining treatments withheld or withdrawn, and 1% of deaths involved euthanasia of infants not dependent on life support. As a paediatrician who cares for children with complex and often life-shortening conditions, and their families, I oppose euthanasia for several reasons. Yet I also believe that a rigorous mind puts assumptions, convictions, and beliefs to a test, seeking information or engaging in dialogues that could conceivably lead to a change of mind. This self-sceptical habit is especially important in ethically problematic or politically charged topics. For euthanasia, from my vantage as a clinician and as a reader of arguments for and against this practice, at least five issues impinge on the likelihood of a change of mind. First, the unspoken power of taboo. Would legalising or otherwise permitting euthanasia lead to a moral descent down a slippery slope? While the consequences of adopting a euthanasia-tolerant policy are of utmost concern (addressed below as the last issue), the slippery slope argument also relies on a latent sense of taboo: there are lines that should not be crossed. Unfortunately, in the medical-moral landscape, dying patients who are suffering are often located beyond the lines of usual practice, on the precarious periphery, a terra infirma bounded by ignorance, denial, and unsubstantiated edicts about the proper care of the dying. Compassionate care requires physicians to go where these patients are, into the morally challenging and thus uncertain margins of medical care. The cloak of taboo that enshrouds euthanasia in most cultural contexts, far from providing an edifying set of ethical boundaries, keeps the practice—and the underlying motives—in the dark. One need not agree with Dutch euthanasia policy to nonetheless perceive potential value in their emphasis on surmounting taboo to make controversial issues “speakable”.2,3 Second, possible injury to the medical profession. Would making euthanasia permissible have an untoward impact on individual patient-doctor relations or on the medical profession’s standing in society?
Protestors in the Netherlands demonstrate against euthanasia in terminally ill infants
Remarkably little empirical evidence addresses these questions, especially from the perspective of patients or parents. For the related practice of physician-assisted suicide, doctors in Oregon report that only a few of their patients are sufficiently concerned about their doctors’ stance on physician-assisted suicide to switch to another physician—and that a larger proportion of patients switch if their physician is opposed to the practice than if their physician supports it.4 More population-based studies on these questions, weighted to emphasise the views of patients or parents are needed.5,6 Third, the appropriateness of the locus of concern. Is the patient suffering—or are we? Because moral arguments supporting euthanasia rest largely on the obligation to attempt to ease patients’ suffering, evidence that euthanasia is only done when patients are suffering, and never when patients are only expected to have a diminished quality of life or an increased burden of care, is required. This issue is of paramount concern for infant and child patients, who can neither voluntarily nor competently request euthanasia, nor express their views about their present or future existence (which, in a group of extremely low-birthweight survivors, differed from the views of health-care providers).7 Given that a quarter of end-of-life decisions in the Dutch survey were based on concerns for an “extremely poor prognosis for later life” (with an even larger proportion of such decisions reported elsewhere),8 and the finding that the vast majority of Flemish physicians affirm the relevance 1285
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of expected quality of life as a consideration in therapeutic decision-making, the potential of nonsuffering quality-of-life concerns to motivate euthanasia is not remote. Fourth, the too-often inadequate quality of palliative care. If the patient is suffering, have all other effective methods to control the suffering been exhausted before resorting to euthanasia? For physical pain, these methods range from the use of opioids in adequate doses (which too often is not provided to children in pain, especially very young or premature newborns, as suggested in the study from Flanders) to the use of terminal sedation. In the realms of emotional, social, and spiritual suffering, consultation with a multidisciplinary palliative-care team, from psychology, psychiatry, social work, and pastoral care, can lead to salubrious interventions for the patient and family members that not only treat symptoms such as anxiety or depression but also promote a sense of meaning in the illness experience.9,10 Furthermore, just as the quality of hospital infection-control techniques is assessed and improved by infection-control services, similar institutional frameworks—such as a suffering-control service with a broad mandate to monitor and intervene —should be put in place. Only after this broad range of caring treatments has been used should we be persuaded that a patient’s suffering is truly both insufferable and unmanageable. Fifth, the threat of potential abuse. What is the likelihood that people who are not experiencing uncontrollable suffering would be killed by misguided acts of euthanasia? The spectre of abuse casts a shadow in two directions, both on keeping euthanasia illegal (in which case, euthanasia will likely continue covertly as appears to be occurring in Flanders) and on making this practice legitimate under certain circumstances (in which case, abuse might arise from an extension of the practices beyond these circumstances, which given the
history of infant euthanasia is all too conceivable).11 If we want a policy that would reduce acts of killing to a minimum, we need far better evidence from various practice settings about the impact of end-of-life-care policies on actual clinical practice. Euthanasia will elicit passionate responses from both proponents and opponents for the foreseeable future. While reason and research cannot resolve all conflicts, understanding how both sides conceive the key issues and clarifying what data might cause them to change their minds should be considered a necessary prequel to all investigations that aim to inform, elevate, or advance the dialogue, private and public. Chris Feudtner Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
[email protected] I declare that I have no conflict of interest. 1 2 3 4
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Gardner H. Changing minds: the art and science of changing our own and other people’s minds. Boston: Harvard Business School Press, 2004. De Vries R. Review of James Kennedy, Een weloverwogen dood: euthanasia in Nederland. Bull History Med 2003; 77: 752–53. Thomasma DC. Asking to die: inside the Dutch debate about euthanasia. Dordrecht: Kluwer Academic Publishers, 1998. Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA, Delorit MA Oregon physicians’ attitudes about and experiences with end-of-life care since passage of the Oregon Death with Dignity Act. JAMA 2001; 285: 2363–69. Wolfe J, Fairclough DL, Clarridge BR, Daniels ER, Emanuel EJ. Stability of attitudes regarding physician-assisted suicide and euthanasia among oncology patients, physicians, and the general public. J Clin Oncol 1999; 17: 1274–79. Ryynanen OP, Myllykangas M, Viren M, Heino H. Attitudes towards euthanasia among physicians, nurses and the general public in Finland. Public Health 2002; 116: 322–31. Saigal S, Stoskopf BL, Feeny D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 1999; 281: 1991–97. Cuttini M, Nadai M, Kaminski M, and the EURONIC Study Group. End-oflife decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries. Lancet 2000; 355: 2112–18. Milstein JM. Detoxifying death in the neonate: in search of meaningfulness at the end of life. J Perinatol 2003; 23: 333–36. Carter BS, Levetown M. Palliative care for infants, children, and adolescents: a practical handbook. Baltimore: Johns Hopkins University Press, 2004. Pernick MS. The black stork: eugenics and the death of ‘defective’ babies in American medicine and motion pictures since 1915. New York: Oxford University Press, 1996.
Child survival: time to match commitments with action 4 million neonates and over 6 million older children continue to die each year.1,2 A small set of known effective interventions can prevent over 60% of these deaths; however, most children in developing countries are not reached by these interventions.3,4 1286
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