In completing the Global Burden of Disease Survey which boldly proclaims that your participation “contribute(s) to the scientific understanding of global health problems and ultimately enable policymakers and health care leaders to make better decisions” I was reminded of a text message conversation I had yesterday with my sister.
Sister: Does paying like 20% taxes on my paycheck make sense?
Sister: That’s a lot of money…I want it back
Me You can’t have it back
Sister: 😦 …But I want it
This is exactly how I felt in completing the survey.
I don’t want to decide if I think someone who has crippling depression and nightmares is better off than someone who lost part of their hand and has tingling in their stubs. I don’t want to decide if I think it’s better to live 10 years blind than 7 years in perfect health. And I definitely don’t want to answer this question about whether I made my decisions by imagining myself or a family member with these disabilities or if I just made up some outside person and bequeathed them with these various miseries thankyouverymuch.
And yet, I have to. At least if I want to complete the survey. Which was after all an assignment for class and as the dutiful grad student I wouldn’t want to appear incompliant. Not until the second half of the semester anyway.
But this survey brings up a bigger issue, of course. Global Health advocates and policy makers are struggling with creating summary measures which can represent health status in a single number, thereby creating a framework whereby populations and individuals can be more precisely compared, and therefore health policies/ funding can be more appropriately channeled to where it is needed most.
Ok, fine, that seems like a pretty reasonable goal. But it brings up a whole mess of issues, not the least of which is answering the question of how exactly do we compare the health of people from Africa to Alaska, across a slew of disabilities, injuries, psychoses, illnesses, disfigurations etc.
One solution that has been put forth is the DALY. The DALY, or disability-adjusted life years, creates a numerical measurement for evaluating health status. Combining data on mortality and morbidity, the DALY adjusts for both fatal and non-fatal illness, creating a measure to compare those who are ill to someone with “perfect” health. Ultimately, and most controversially, the DALY ends up giving a lower measurement, or value, to the life of a person with disabilities. Needless to say, there has been a certain amount of backlash, especially among the disabled community, towards as system that pitted the value of their life against people without disabilities, and determined that it was worth less.
SO- here is the question, do you think the life of someone with a disability is indeed worth less than someone without?
I recently took the NYU course on International health policies and programs or something along those lines in geneva, in which one of our outings consisted of a site visit to the WHO. One of the speakers was a certain Tom Shakespeare, who works at the WHO on improving health policies for those with disabilities. He himself suffers from Achondroplasia, a type of dwarfism. Now, although Tom fully recognizes that there are some limits to what he can do (the poor man can’t even go into one of the buildings at the WHO as it’s not wheelchair accessible. Sidenote- as a Swiss citizen and someone that has tried to travel through Barcelona via subway with a large suitcase, I feel qualified to say that Europe has a FAR WAY TO GO in providing services for people with disabilities) I’d be hard pressed to imagine that this admirable man feels that his life is worth any less than mine. Anyway the point I’m trying to make is that although I don’t think anyone of us would choose to become disabled, I also don’t think being disabled necessarily devalues your life. It probably has a lot to do with where you live, what kind of disability you have (other disabilities, such as blindness and deafness and also factored in DALYs, but I bet the experience of someone who is blind in a wealthy community on Long Island is very different than that of someone who is blind in the Amazon Jungle) how it is treated, etc.
Additionally, I think trying to measure health cross-culturally is an incredibly difficult thing to do. In the novel The Spirit Catches You and You Fall Down, Western doctors diagnose the young Hmong girl as suffering from epileptic seizures. Meanwhile her parents are certain that a spirit that has disengaged her soul has possessed her body. One of the methods utilized to collect data on mortality, particularly in poor countries with poor records, is a verbal autopsy. In this procedure health practitioners determine cause of death from interviews with family members. As illustrated by the Hmong example, one culture’s perception of an illness or a cause of a death can be very different from another’s. One person’s epilepsy is another’s spirit possession. Policy makers should beware of what kind of data they are collecting, while at the same time being sensitive as to other cultures’ perceptions of death and illness.
Despite all these objections, I think there is certainly a value in trying to come up with an objective, quantifiable value to determine the health status of different populations.
I just have two warnings
Some work on summary measures for population health (ehem, A critical examination of summary measures of population health by Murray, Salomon and Mathers) go so deeply into this question of measuring health gaps and linear aggregates and criteria 1-4 that I feel like they’ve lost touch with the bigger picture. Is global health really going to be improved by quibbling over minutiae? Isn’t it pretty clear that things aren’t going so well in Sub-Saharan Africa and we better start figuring out some clear answers to deceasing HIV/AIDS prevalence, diarrhea, and starvation? And that we’re so busy drowning ourselves in ketchup and coca-cola in the US that if we don’t start enacting some programs driving it into people’s heads about how fat we all are we’re all going to die of Cardiovascular disease by age 40?
2- A Numbers Trap
Trude Arnesen makes a good point in his article about problems with the ethics of the DALY. Let us not confuse health with value. Let us recognize the DALY for what it is, a rating of health status done by a group of people who chose to pursue such a thing and beware of the implications it could have on policies affecting actual people. The usefulness of a DALY, or any other summary measure is limited by the fact that it turns human beings into numbers, and therefore opens us up to the trap of trying to make the numbers work while forgetting about what we’re actually trying to achieve. All human beings have value regardless of their heath status and in trying to quantify health we must not loose sight of what it is we’re quantifying.
Of course in creating summary measures for health there are going to be some hard decisions and ethically grey areas. And no one really wants to make the tough decisions of deciding whose life is more worthy that another and who should get help and funding while someone else suffers.
But some things can’t be avoided, like death and taxes.