How to decide on the impossible

Triage decisions are complex and pose a genuine dilemma since all patients included in the triage decision require medical attention and desire to receive treatment (otherwise they are not included in the triage decision), but due to limited resources, treatment must be denied to some, resulting in harm and potentially leading to death. To provide quick guidance, the DIVI issued a (multiply revised) guideline at the beginning of the COVID-19 pandemic in 2020. The DIVI recommended a utilitarian approach, using the clinical prospect of success, supported by the Clinical Frailty Score, the Sequential Organ Failure Assessment Score (SOFA score) and comorbidities impacting COVID-19 infections to decide who receives intensive care treatment.2 The approach is utilitarian because by selecting patients for treatment in light of the clinical prospect of success, one maximises the number of people benefiting from treatment. The lack of inclusion of people with disability representatives in the definition of these triage criteria and the absence of a broader societal debate about them have raised criticism, particularly from the people with disability community.6 Many quickly released triage protocols prioritised saving the most lives and maximising post-treatment life expectancy, which may entail discriminatory outcomes for people with disability.7

Concerns regarding potential injustices motivated nine people with disability and their legal representatives to file a constitutional complaint at the German Constitutional Court in 2020. They argued that the German state is obliged to protect people with disability better from discrimination in the COVID-19-induced triage of intensive care resources as stated in Article 3, §3 of the German constitution, which states that ‘no person shall be disfavoured because of disability’.4 The complainants indicated that the current legislation fails to safeguard this fundamental right when it comes to the allocation of scarce healthcare resources during the pandemic. They further claimed that withholding scarce medical treatment based only on the criteria established by medical associations (such as the DIVI) is illegal and demanded a broader societal discussion and a legal regulation.3

In December 2021, the German Federal Constitutional Court decided that the government must ensure the effective prevention of any discrimination related to disability in the distribution of scarce intensive care treatment resources during a pandemic. The Court recommended the short-term probability of survival as the main allocation criterion.8 In response, the German government released a draft law in October 2022, adopting the current, short-term probability of survival as the allocation criterion.9 Then, more than 50 associations, including patient representatives, disability associations and medical professional associations, were invited to comment on the draft law. For this essay, the different suggestions made in these position papers were summarised into three schools of thought: some commentators advocated for randomisation, such as a lottery principle, while others supported the first come first served procedure. Still others emphasised the current short-term probability of survival as the primary principle for allocation. The next paragraph provides an overview of the arguments in favour and against each of the three principles.

What is fair? Three principles for the allocation of scarce resources

Assessing survival probabilities in clinical practice

To summarise, the current probabilities to survive principle is a good criterion to efficiently allocate scarce healthcare resources. However, measures to promote a more rights-based approach should be taken to reduce discrimination of people with disability and provide a more equitable distribution of scarce resources.

In order to reduce the potential of the current, short-term probability of survival principle for discrimination against people with disability, it can help to define positive criteria for measuring probabilities to survive based on empirical evidence for the specific pandemic. In the beginning of the pandemic, scoring systems such as the SOFA Score and the Clinical Frailty score were frequently recommended for evaluating the probability of survival for COVID-19 patients.2 However, studies have shown that these scoring systems can lead to discrimination against people with disability since the latter more often suffer from comorbidities.1 The SOFA score assesses organ dysfunction and mortality risk based on specific parameters for breathing, circulation, nervous system function, liver function, haematological situation and kidney function. It was developed using collective data and not individual parameters. Therefore, it can be useful as a starting point, but doctors should mainly consider individual parameters for decision-making. The Clinical Frailty score assesses a patient’s frailty using nine categories, and has been used during the COVID-19 pandemic to identify patients who are unlikely to benefit from intensive care.2 It is effective for patients older than 65, but is not appropriate for all COVID-19 patients because it discriminates against younger patients who may need a wheelchair but otherwise have a good chance of survival.20 The score is based on a subjective definition of the ‘normal population’, which introduces biases.21

Individual parameters, such as the C reactive protein, D-Dimer, creatinine, blood pressure and vital signs, also correlate to the probability of survival.22 However, these parameters are influenced by comorbidities and disabilities, potentially discriminating against people with disability. Comorbidities such as chronic obstructive pulmonary disease, kidney disease, liver disease, cancer, immune deficiency and diabetes significantly affect ICU patients’ survival probability and can be linked to disability.20 23 Although the new infection control law prohibits the use of disabilities to evaluate survival, they still indirectly impact decision-making when a comorbidity significantly impacts the probability to survive. Conclusively, the positive criteria for assessing the probability to survive presented in this article can provide some guidance to physicians but they have discriminatory potential, and physicians should not rely solely on these criteria. In order to meet the German Federal Constitutional Court’s requirement of preventing discrimination against people with disability, decision-makers must adopt further measures to promote a more rights-based approach and protect people with disability from discrimination when applying a current, short-term probability of survival principle.

Ways to reduce the discrimination of scoring criteria

Various strategies to promote the rights of people with disability while using scoring criteria will be explored in the following.

One solution could be replacing scoring systems, such as the SOFA score, with broad categorisations that assign patients high, medium or low priority for treatment. This approach simplifies the categories and reduces the significance of small differences in survival probabilities.21 The numeric scale of the SOFA score leaves little room to adapt to the individual patient and their situation. Broader categories leave more room for individual decision making. They give more responsibility for doctors to view each patient as an individual. Socioeconomic and institutional factors can be taken into account. Nonetheless, it has to be acknowledged that this solution requires the reduction of potential stereotypes doctors may have towards people with disability.

Another approach is to address socioeconomic disparities that affect the health and healthcare of people with disability.15 Doctors could prioritise disadvantaged patients within the group that meets the chosen threshold of likelihood to survive.12 They can use an index such as the Area Deprivation Index (ADI) in the USA. Public health specialists could develop a similar index for Germany to correct triage scores, such as the SOFA score, for patients affected by structural disadvantage. This also prioritises people with disability indirectly. The ADI is a tool used to measure the socio-economic disadvantage in specific geographical areas. It is based on a combination of factors including income, education, employment, housing quality and household composition.17 A set of variables related to socioeconomic status is initially identified to calculate the ADI. These variables are then combined using a statistical algorithm to create a single score for each geographical area, representing the level of socioeconomic disadvantage in that area. The ADI score can range from 0 to 100, with higher scores indicating greater levels of deprivation. In the context of pandemic triage, the ADI could be used as a correction factor to adjust the priority assigned to patients based on their predicted probability of survival. Patients with similarly predicted probabilities of survival, for example, could be assigned a higher priority if they come from areas with higher levels of deprivation, reflecting the fact that they face additional barriers to accessing healthcare and other resources. Criteria such as quality of life, long-term life expectancy, broad social worth, gender and sexual orientation remain excluded.17 Nonetheless, this approach can still fail to promote social justice, since healthy disadvantaged people could be selected, helping those not affected by the health effects of their disadvantage. Moreover, one can claim that access to healthcare should not be based on social but only medical criteria. Additionally, the accuracy of such indices can be questioned since they were not designed to guide life-or-death decisions but those in public health and social politics.12

In conclusion, indices such as the ADI may not be used directly to alter triage scores, but the idea of balancing discrimination against patients with disability and socially disadvantaged patients with some kind of procedure remains under discussion. Additionally, long-term solutions to address health inequalities require public health policies, and systemic changes to promote social and economic equality are necessary.21 Approaches such as care ethics can provide insights into the dynamic of triage as being shaped by interpersonal and institutional relationships. They can add another perspective to the rights-based and utilitarian approaches and should be further included into the debate in future work.24

Another way to mitigate discrimination in triage criteria should be including disabilities advocacy groups and social workers in the decision-making process.21 They can help to uncover unconscious bias, serve as patient advocates and develop discrimination-free scores.25

Lastly, medical education should include mandatory seminars on the structural discrimination of people with disability in healthcare, and students and doctors should be encouraged to learn more about the experiences of people with disability in order to reduce discrimination. That way doctors learn to reduce biases in their own decision-making.