{"id":17268,"date":"2022-04-20T08:00:27","date_gmt":"2022-04-20T06:00:27","guid":{"rendered":"https:\/\/voelkerrechtsblog.org\/?p=17268"},"modified":"2022-04-21T10:18:30","modified_gmt":"2022-04-21T08:18:30","slug":"covid-19-triage-and-the-persistent-problem-of-disability-discrimination-in-healthcare","status":"publish","type":"post","link":"https:\/\/voelkerrechtsblog.org\/de\/covid-19-triage-and-the-persistent-problem-of-disability-discrimination-in-healthcare\/","title":{"rendered":"COVID-19 Triage and the Persistent Problem of Disability Discrimination in Healthcare"},"content":{"rendered":"

The COVID-19 pandemic continues to create\u00a0major challenges for\u00a0public healthcare. Numerous countries are faced with the difficult task\u00a0of allocating scarce medical resources, e.g.\u00a0ventilators<\/u><\/a>, to COVID-19 patients (see, e.g., case studies concerning Italy and France<\/u><\/a>, Italy and Spain<\/u><\/a>, and the US<\/u><\/a>). In particularly dire situations, stakeholders must\u00a0take up the challenge of developing\u00a0triage systems in accordance with their obligations under international human rights law.<\/p>\n

Persons with disabilities (PWD) are especially vulnerable in the wake of the pandemic (see here<\/u><\/a>, p. 4-7).\u00a0Their right to equal access to healthcare under Article 25 of the International Convention on the Rights of Persons with Disabilities (ICRPD) is belied by the reality of discrimination in\u00a0public health care systems. Biases towards PWD distort judgment in triage situations, possibly leading to discriminatory deprivation of medical treatment.<\/p>\n

This blog post lays out the relevant framework under the ICRPD, contrasts it with the realities of exclusionary healthcare and triage practices around the world, and presents ways to bridge the gap in accordance with international human rights law.\u00a0A recent case<\/u><\/a> before the German Federal Constitutional Court illustrates how States are starting to recognize and address the problem.<\/p>\n

Equal Access to Healthcare <\/strong>under the <\/strong>ICRPD<\/strong><\/p>\n

Article 25\u00a0ICRPD obligates State parties to provide the \u201csame range, quality and standard\u201d of healthcare to persons with and without disabilities and to \u201cprevent discriminatory denial of health care [\u2026] on the basis of disability.\u201d\u00a0In essence, the ICRPD forbids substandard levels\u00a0of healthcare on the basis of disability (see here<\/u><\/a>, p. 263).\u00a0Article 11 ICRPD clarifies that this framework also applies during public emergencies.\u00a0In those times, PWD experience an increased risk of discrimination (see here<\/u><\/a>, para. 43).<\/p>\n

Equal access to healthcare, on the one hand,\u00a0requires\u00a0measures against environmental barriers, e.g. wheelchair ramps on hospital premises\u00a0(see here<\/u><\/a>, para. 7 and here<\/u><\/a>, para. 12 (b) (ii)).\u00a0Even more significant, however, is the reduction of attitudinal barriers in healthcare (see here<\/u><\/a>, p. 285 and here<\/u><\/a>).\u00a0In this context, the social model of disability underlying the ICRPD plays a central role. In contrast to the outdated medical model, this approach stresses that disabilities\u00a0result from the \u201cinteraction\u00a0between persons with impairments and attitudinal and environmental barriers\u201d\u00a0(see here<\/u><\/a>, Preamble (e)\u00a0and, generally,\u00a0here<\/u><\/a>, p. 41-59).\u00a0Disability is no personal medical problem, but rather an issue of extrinsic barriers created by society (see here<\/u><\/a>, p. 5-7). Rejecting the medical model of disability means rejecting the notion that PWD are inherently and incurably less healthy (see here<\/u><\/a> and here<\/u><\/a>, p. 246).\u00a0This then opens the door to treatment based on actual medical evidence instead of preconceived notions about disability.<\/p>\n

Disability <\/strong>Discrimination in Healthcare<\/strong><\/p>\n

Unfortunately, the\u00a0realities in healthcare are different. The UN Committee on the Rights of Persons with Disabilities (CRPD) has noted that State parties have not abandoned the medical model of disability (see here<\/u><\/a>, para. 2).\u00a0This persistent convolution of disability and illness\u00a0impairs the level of healthcare granted to PWD.\u00a0Discrimination occurs, for example, in the form of\u00a0\u201cdiagnostic overshadowing\u201d, i.e., the prejudicial attribution of ailments to a patient\u2019s disability without a medical basis. This issue has been shown to lead to underdiagnosis, mistreatment, and generally inferior levels of medical care (see here<\/u><\/a>, p. 118 and, generally, here<\/u><\/a>). Furthermore, doctors tend to be affected by biases regarding the resilience, quality of life, and prospects of recovery of PWD (see here<\/u><\/a>, p. 287-288, here<\/u><\/a>, p. 9, and here<\/u><\/a>, p. 246).\u00a0The quality of life is often evaluated on a functional basis instead of focusing on the patient\u2019s actual enjoyment of life.\u00a0Consequently, treatment is sometimes considered \u201cfutile\u201d\u00a0based solely on the fact that the patient is disabled (for an extensive study of medical futility and disability bias, see\u00a0here<\/u><\/a>, for an inquiry into a particularly severe manifestation, see\u00a0here<\/u><\/a>).\u00a0Decision-making based on such preconceived notions about disability amounts to discrimination contrary to the ICRPD (see here<\/u><\/a>, p. 515).<\/p>\n

Disability Discrimination in <\/strong>COVID-19 Triage<\/strong><\/p>\n

Triage aims at maximizing the amount of human life\u00a0saved by healthcare\u00a0by establishing a prioritization between patients when resources do not allow the treatment of everyone (see here<\/u><\/a>, p. 2051-2053). This approach relies on two major questions: how dire is the need for treatment and to what extent will the patient benefit from treatment?\u00a0The second aspect\u00a0is where the persistent medical conception of disability leads to discrimination (see here<\/u><\/a>, p. 246).\u00a0Even though the chances of clinical success, expected quality of life, and prospective remaining years of life prima facie<\/em>\u00a0appear neutral in relation to disability, they are vulnerable to\u00a0an intrusion of biases (see here<\/u><\/a>, p. 516).\u00a0Discrimination occurs when disability is used as a shorthand for lower chances of medical success or an \u201cinferior value\u201d of a survivor\u2019s life without medical evidence (see here<\/u><\/a>, p. 4).<\/p>\n

Firstly, triage guidelines themselves have been shown to discriminate against PWD. Some guidelines set out the existence of certain impairments or the need for daily support\u00a0as exclusion criteria (see here<\/u><\/a>, p. 1-2).\u00a0Others call for the application of the Clinical Frailty Scale (CFS) in triage even though it has been developed for elderly patients and may be misleading in the context of PWD (see here<\/u><\/a>, p. 4 and here<\/u><\/a>, p. 6-7).\u00a0Similarly, using\u00a0disability adjusted life-years (DALYs) as a criterion for prospective benefits puts a lower value on the lives of PWD (see here<\/u><\/a>, p. 246-247).<\/p>\n

Secondly, the preconceived notions of practitioners lead to discrimination.\u00a0Limited time and prognostic uncertainty render triage decisions particularly vulnerable to implicit biases (see here<\/u><\/a>, p. 8-9).\u00a0The issue of \u201cdiagnostic overshadowing\u201d\u00a0here causes the assumption that PWD are less likely to benefit from treatment (see here<\/u><\/a>, p. 4).\u00a0Evaluations of the quality of life are particularly subjective, as has been laid out above (see here<\/u><\/a>, p. 363-364).\u00a0Further problems arise when stereotypical assumptions about life-expectancy are made (see here<\/u><\/a>, p. 1-2).<\/p>\n

States are violating the prohibition of discrimination when they\u00a0uphold discriminatory guidelines and fail to counteract implicit biases (see here<\/u><\/a>, p. 1061).\u00a0Recent evidence shows that such discrimination against PWD in COVID-19 triage takes place around the world (see here<\/u><\/a>, p. 42).<\/p>\n

The <\/strong>T<\/strong>riage <\/strong>D<\/strong>ecision <\/strong>of<\/strong> the <\/strong>German Federal Constitutional Court<\/strong><\/p>\n

A recent decision by the German Federal Constitutional Court illustrates how these problems are addressed by State parties to the ICRPD.\u00a0On 16 December 2021, the Court held that Germany\u2019s regulation of triage is insufficient. The State was thus declared to be in breach of the prohibition of discrimination under Article 3 (3) second sentence of the German Basic Law as well as Article 25 ICRPD.<\/p>\n

Relying on expert evidence, the Court saw a significant risk of disadvantages\u00a0for PWD in triage due to subconscious stereotyping. The existing\u00a0guidelines by professional associations were held to be insufficient in counteracting this risk.\u00a0According to the judgment, the guidelines\u00a0may even exacerbate risks of discrimination because they\u00a0set out comorbidities and frailty as significant factors. It cannot be ruled out, according to the Court, that disability will be equated with comorbidities. This risk must be counteracted with binding legislation. Furthermore, relevant legislation must stipulate that the likelihood of survival as a factor in determining the prospects of success only refers to the survival of the \u201cacute medical episode in question\u201d.<\/p>\n

According to unofficial reports (see here<\/u><\/a> and here<\/u><\/a>), the German government is preparing pertinent draft legislation.\u00a0The draft allegedly sets out the will of the patient, medical urgency, and the current and short-term chances of survival as permissible criteria. Comorbidities and frailty are included as relevant factors only insofar as they considerably reduce the current or short-term chances of survival. Particularly the inclusion of clinical success, frailty and comorbidities has already elicited criticism\u00a0by disability rights advocates\u00a0(see here<\/u><\/a> and here<\/u><\/a>). It remains to be seen which form the official draft will take.<\/p>\n

A Way Forward in Line with the ICRPD<\/strong><\/p>\n

Article 4 (1) (b) ICRPD obligates State parties to take all appropriate measures\u00a0to abolish discriminatory laws, regulations, customs, and practices.\u00a0First and foremost, this entails repealing\u00a0discriminatory triage rules.\u00a0Several States already reacted by adapting their guidelines in the wake of the pandemic. Pertinent COVID-19\u00a0regulations in South Africa and the UK now clarify that the CFS is not applicable for young patients with \u201cstable long-term disabilities\u201d (see here<\/u><\/a>, p. 6-7 and here<\/u><\/a>, p. 4).<\/p>\n

But States must also actively counteract biases of healthcare professionals.\u00a0This requires the development of\u00a0frameworks\u00a0for triage decisions which consider the implicit biases\u00a0in healthcare.\u00a0The framework must encourage practitioners to avoid broad categorizations\u00a0and instead focus on factors which are grounded in scientifically sound medical evaluations (see here<\/u><\/a>, p. 1).\u00a0A promising practice in this regard is the Guidance of the Bioethics Committee of the San Marino Republic for triage decisions concerning persons with disabilities (see\u00a0here<\/u><\/a>, p.\u00a02, for the Committee\u2019s statement, see\u00a0here<\/u><\/a>).<\/p>\n

The precise substantive criteria of triage protocols are subject to \u2013 primarily ethical \u2013 debate and admittedly difficult to nail down from an international law perspective. However, the ICRPD gives some guidance as to how those discussions should take place.\u00a0Article 4 (3) ICRPD obligates State parties to \u201cclosely consult with and actively involve\u201d PWD when developing legislation relevant to them\u00a0(see also here<\/u><\/a>, p. 9).\u00a0In line with the aphorism\u00a0\u201cnothing about us without us\u201d, the ICRPD demands meaningful participation of PWD (see here<\/u><\/a>, para. 4).\u00a0This will help to prevent to consolidation of implicit biases. A practical example is the COVID-19 Disability Advisory Group to the Canadian government, which enables PWD and their representative organizations to\u00a0advise the government on \u201cthe real-time lived experiences of persons with disabilities during this crisis\u201d, helping to solve \u201cdisability-specific issues\u201d in the pandemic\u00a0(see here<\/u><\/a>).<\/p>\n

Legislation alone will not be sufficient in uprooting\u00a0stereotypes about the health of PWD. The ICRPD further requires State parties to undertake\u00a0\u201cadequate awareness-raising measures and measures to change or abolish compounded pejorative disability stereotypes and negative attitudes\u201d (see here<\/u><\/a>, para. 39).\u00a0More\u00a0specifically, Article 25 (d) ICRPD\u00a0demands training medical professionals regarding the specific needs and unique experiences of PWD. Higher medical education is famously lacking in this respect, particularly with a view to abandoning the medical model of disability\u00a0(see here<\/u><\/a>, p.\u00a02 and here<\/u><\/a>, p. 1815). The inclusion of PWD in medical education can help to raise awareness of disability as a lived reality instead of a cluster of medical diagnoses (see here<\/u><\/a>, p. 1797).<\/p>\n

 <\/p>\n

The \u201cBofaxe\u201d series appears as part of a\u00a0<\/em>collaboration<\/em><\/u><\/a>\u00a0between the\u00a0<\/em>IFHV<\/em><\/u><\/a>\u00a0and V\u00f6lkerrechtsblog.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

The COVID-19 pandemic continues to create\u00a0major challenges for\u00a0public healthcare. Numerous countries are faced with the difficult task\u00a0of allocating scarce medical resources, e.g.\u00a0ventilators, to COVID-19 patients (see, e.g., case studies concerning Italy and France, Italy and Spain, and the US). In particularly dire situations, stakeholders must\u00a0take up the challenge of developing\u00a0triage systems in accordance with their […]<\/p>\n","protected":false},"author":16,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6639],"tags":[],"authors":[7002],"article-categories":[5108],"doi":[],"class_list":["post-17268","post","type-post","status-publish","format-standard","hentry","category-uncategorized","authors-tobias-wirthle","article-categories-bofaxe"],"acf":{"subline":""},"meta_box":{"doi":"10.17176\/20220420-182127-0"},"_links":{"self":[{"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/posts\/17268","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/users\/16"}],"replies":[{"embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/comments?post=17268"}],"version-history":[{"count":8,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/posts\/17268\/revisions"}],"predecessor-version":[{"id":17281,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/posts\/17268\/revisions\/17281"}],"wp:attachment":[{"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/media?parent=17268"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/categories?post=17268"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/tags?post=17268"},{"taxonomy":"authors","embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/authors?post=17268"},{"taxonomy":"article-categories","embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/article-categories?post=17268"},{"taxonomy":"doi","embeddable":true,"href":"https:\/\/voelkerrechtsblog.org\/de\/wp-json\/wp\/v2\/doi?post=17268"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}