An International Perspective and the QALY Index
Assor’s study extends beyond Israel, incorporating international research on healthcare prioritization. One of the major components of her research is an examination of the Quality-Adjusted Life Years (QALY) index, a widely used tool in healthcare economics that evaluates the cost-effectiveness of medical interventions. Through interviews with 21 health economists engaged in global QALY research, Assor highlights the methodological and ethical challenges in incorporating SWD into healthcare evaluations. Many experts noted that while QALYs theoretically account for quality of life, the dominant models still assume that death is the worst possible state. Quentin (full name withheld by the researcher), an internationally renowned health economist who was interviewed for the study remarked: “There is a campaign against QALYs for various reasons, and the main argument they have against us is that it is ableist. Anyone who understands math knows this is untrue, but this argument has become prominent. It has significantly hindered our ability to advance QALY research in general, let alone on issues like SWD, where it is wrongfully thought to deepen the discrimination.”
The study further reveals that QALY-based decision-making struggles with defining SWD across cultural and societal contexts. Joan (full name withheld by the researcher), a health economist working on Quality-Adjusted Life Years (QALY) methodologies, noted that the challenge is not just ethical but also mathematical: “QALYs must remain algebraically simple. They cannot involve complicated mathematical formulas. Besides, SWD is only relevant to specific cases. So, adding this complexity to the formula when it is only marginally relevant does not outweigh the principle of maintaining simplicity”. This epistemic preference for simplicity ultimately contributes to the omission of SWD from cost-effectiveness analyses, reinforcing the bias toward life-prolonging treatments and further marginalizing suffering as a key factor in healthcare decision-making.
A Reluctance to Confront Death
A dominant theme in Assor’s study is the PNAC’s deep-seated fear of death, which manifests in its prioritization of life-prolonging treatments, often at the expense of alleviating suffering. This death bias, as former PNAC member and bioethicist Evan (full name withheld by the researcher), described is rarely discussed within the committee itself: “The committee has a clear yet undiscussed tendency to prioritize the prolongation of life, that is, the prevention of death. Is it not time for the Ministry of Health to convey to people that death is a part of life? … The committee members were so influenced by their fear of death that they could not even address this topic”.
This reluctance leads to a systematic disregard for conditions that patients may experience as worse than death, such as severe chronic pain, degenerative neurological disorders, or profound disabilities. This perspective also applies to the PNAC’s health technology assessment documents. Regardless of the type of technology evaluated, all documents are based on the same template and contain the same sections. I asked one member of the health technology assessment (HTA) staff at the Ministry of Health, whether they considered specifically addressing SWD in these documents. The staffer, Adi (full name withheld by the researcher), responded by saying, “There is no feasible way of doing this. Since we rarely have data on SWD, adding this section will introduce more noise to the system and make these documents more complex.” In the pursuit of simplicity, HTA documents therefore disregarded SWD.
Hebrew University of Jerusalem
Ethical Imperatives and Religious Influence
Another critical barrier to incorporating SWD into the PNAC’s evaluations is the ethical and religious frameworks that dominate its discussions. Assor’s study reveals that Jewish law plays a significant role in shaping the committee’s priorities. The “Hayey Olam” principle—preserving life at all costs—dictates that preventing death takes precedence over alleviating suffering.
Sarah (full name withheld by the researcher), a senior physician and former committee member, explained: “The committee prefers dealing with helping children and prolonging life. Particularly it likes the combination of these two—children in life-threatening situations. Focusing on the elderly is less appealing to them… Some are simply afraid of thinking about how one’s body deteriorates in old age when one nears death, just as they are afraid of death more generally”. This ethical lens effectively sidelines the discussion of SWD, despite its potential to improve quality of life for many patients. The tension between prolonging life and preventing suffering remains unresolved within the committee’s framework.
Pharmaceutical Companies and the Market’s Influence
The financial interests of pharmaceutical companies contribute to the marginalization of SWD. Assor’s study notes that most medical research funding comes from pharmaceutical firms, which have little incentive to investigate whether their treatments leave patients in SWD. Instead, these companies focus on demonstrating that their drugs prolong life—whether that life is one of suffering.
Batya (full name withheld by the researcher), a PNAC staff member responsible for health technology assessment (HTA) documents, illustrated this problem with an example: “I understand that the drug saves these children’s lives, but did somebody stop to consider what state will these children be in after their lives are saved? The pharmaceutical company did not account for these results properly. They only look at the immediate effects. They did not look at other aspects that may arise from their new condition once the dystrophy has stopped spreading”. Pharmaceutical companies’ reluctance to explore these effects results in a lack of relevant data, making it nearly impossible for the PNAC to consider SWD when allocating funds.
The Simplicity Imperative in Healthcare Decision-Making
A final and often overlooked factor in the PNAC’s decision-making is the epistemic value placed on simplicity. Medical and economic models prioritize decision-making frameworks that are easy to apply. The complexity of defining and incorporating SWD into healthcare allocation complicates cost-effectiveness calculations.
As health economist Joan pointed out: “QALYs must remain algebraically simple. They cannot involve complicated mathematical formulas”.
Assor’s findings suggest that this preference for simplicity leads decision-makers to sidestep complex ethical and medical considerations, further marginalizing SWD from policy discussions.
Conclusion: The Costs of Ignoring SWD
Dr. Assor’s research underscores a crucial yet ignored flaw in the Israeli PNAC’s decision-making framework: its systematic exclusion of SWD from official deliberations. This oversight is not accidental but rather the result of a confluence of cultural, ethical, financial, and epistemic factors that collectively shape healthcare policy.
By prioritizing life-prolonging treatments while neglecting SWD, the PNAC perpetuates a model that, paradoxically, may leave many patients suffering in conditions they themselves would deem worse than death. Addressing this bias would require both structural reforms—such as integrating SWD into HTA documents—and a cultural shift toward openly discussing death and suffering in healthcare decision-making. Among the major issues to address in such research would be developing a simple but not simplistic standard definition for SWD and methodologies to collect clinical trial data. As Evan poignantly asked, “Is it not time for the Ministry of Health to convey to people that death is a part of life?”. Without such a shift, Israeli healthcare policy will continue to favor life at any cost, even when that cost is profound and prolonged suffering.
Dr. Yael Assor is a medical anthropologist, from the Hebrew University of Jerusalem, researching healthcare policymaking and health economy.
