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      Disability, discrimination and death: is it justified to ration life saving treatment for disabled newborn infants?

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          Abstract

          Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions.

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          Three decades of pediatric intensive care: Who was admitted, what happened in intensive care, and what happened afterward.

          Frank Shann, Carmel Delzoppo, Irene van Kamp … (2010)
          To describe the characteristics of children admitted to intensive care in 1982, 1995, and 2005-2006, and their long-term outcome. Pediatric intensive care unit in a university-affiliated children's hospital. Information for 2005-2006 admissions was obtained from pediatric intensive care unit database, and long-term outcome was ascertained through telephone interviews. Results were compared to previous cohorts from 1982 and 1995. A total of 4010 children were admitted on 5250 occasions. Readmissions increased from 11% for 1982 to 31% in 2005 to 2006 (p or =1 month, pediatric intensive care unit length of stay remained constant. The risk of death predicted by the Pediatric Index of Mortality (PIM) remained constant (approximately 6%) between 1995 and 2005-2006.The proportion that died in the pediatric intensive care unit fell from 11.0% in 1982 to 4.8% in 2005-2006 (p /=1 month, proportion admitted with a preexisting moderate or severe disability was similar: 12.0% in 1982 and 14.6% in 2005-2006 (p = .11), but the proportion with a moderate or severe disability at follow-up increased from 8.4% in 1982 to 17.9% in 2005-2006 (p or =1 month who either died in the pediatric intensive care unit or survived with disability did not improve: it was 19.4% in 1982 and 22.7% in 2005-2006. Over the last three decades, the length of stay in the pediatric intensive care unit and the severity of illness have not changed, but there has been a substantial reduction in pediatric intensive care unit mortality. However, the proportion of survivors with moderate or severe disability increased significantly. Some children who would have been allowed to die in 1982 and 1995 were kept alive in 2005-2006, but survived with disability. This trend has important implications for our patients and their families, and for the community as a whole.
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            Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis.

            Charles J. Dorman, P M Rothwell, Julia Z. McDowell … (1997)
            To compare the judgments of clinicians on which domains of health in the short form questionnaire (SF-36) would be most important to patients with multiple sclerosis with the opinions of patients themselves; to compare assessment of physical disability in multiple sclerosis by a clinician using Kurtzke's expanded disability status scale and a non-clinically qualified assistant using the Office of Population Census and Surveys' (OPCS) disability scale with self assessment of disability and other domains of health related quality of life by patients using the SF-36 and the EuroQol questionnaire; and to compare the scores of patients for each domain of the SF-36 with control data matched for age and sex. Cross sectional study. Clinical department of neurology, Edinburgh. 42 consecutive patients with multiple sclerosis attending a neurology outpatient clinic for review or a neurology ward for rehabilitation. Scores on the SF-36; EuroQol; Kurtzke's expanded disability status scale; the OPCS disability scale. Patients and clinicians disagreed on which domains of health status were most important (chi 2 = 21, df = 7, P = 0.003). Patients' assessment of their physical disability using the physical functioning domain of the SF-36 was highly correlated with the clinicians' assessment (r = -0.87, P < 0.001) and the non-clinical assessment (r = -0.90, P < 0.001). However, none of the measures of physical disability correlated with overall health related quality of life measured with EuroQol, Quality of life correlated with vitality, general health, and mental health in the SF-36, each of which patients rated as more important than clinicians and for each of which patients scored lower than the controls. Patients with multiple sclerosis and possibly those with other chronic diseases are less concerned than their clinicians about physical disability in their illness. Clinical trials in multiple sclerosis should assess the effect of treatment on the other elements of health status that patients consider important, which are also affected by the disease process, are more closely related to overall health related quality of life, and may well be adversely affected by side effects of treatment.
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              QALYfying the value of life.

              Rachel Harris (1987)
              This paper argues that the Quality Adjusted Life Year or QALY is fatally flawed as a way of priority setting in health care and of dealing with the problem of scarce resources. In addition to showing why this is so the paper sets out a view of the moral constraints that govern the allocation of health resources and suggests reasons for a new attitude to the health budget.
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                Author and article information

                Contributors
                Dominic Wilkinson: dominic.wilkinson@philosophy.ox.ac.uk
                Journal
                Journal ID (nlm-ta): Monash Bioeth Rev
                Journal ID (iso-abbrev): Monash Bioeth Rev
                Title: Monash Bioethics Review
                Publisher: Springer International Publishing (Cham )
                ISSN (Print): 1321-2753
                ISSN (Electronic): 1836-6716
                Publication date (Electronic): 14 October 2014
                Publication date PMC-release: 14 October 2014
                Publication date (Print): 2014
                Volume: 32
                Issue: 1-2
                Pages: 43-62
                Affiliations
                [ ]Faculty of Philosophy, Oxford Uehiro Centre for Practical Ethics, University of Oxford, Suite 8, Littlegate House, St Ebbes St, Oxford, OX1 1PT UK
                [ ]Discipline of Obstetrics and Gynaecology, Robinson Institute, University of Adelaide, Adelaide, SA Australia
                [ ]John Radcliffe Hospital, Oxford, UK
                Article
                Publisher ID: 2
                DOI: 10.1007/s40592-014-0002-y
                PMC ID: 4210721
                SO-VID: 843a3f21-2981-4271-a7b2-f0992e7c666a
                Copyright © © The Author(s) 2014
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.

                History
                Categories
                Subject: Original Article
                Custom metadata
                issue-copyright-statement © Monash University 2014

                Keywords: neonatal intensive care,resource allocation,clinical ethics,withdrawing treatment,disability,quality of life
                Data availability:
                Keywords: neonatal intensive care, resource allocation, clinical ethics, withdrawing treatment, disability, quality of life

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