Progress in Medicine: Balancing Between Hope and Hype.
Progress isn’t as straightforward as we like to think.
Reviewed by Lybi Ma
KEY POINTS-
We think of medical progress in terms of our personal hopes and fears.
What if it focused on improving the health of the community instead?
Medicine that promises too much has potentially serious side-effects.
Are arguments for ‘limits to medicine’ taken seriously enough?
We’re all in favor of progress, aren’t we? If we think of progress in medicine, we imagine new possibilities for curing diseases. New ways of slowing down physical and mental decline. Better protection against genetic and environmental risks. As we age, we do what we can to keep our bodies and our minds in good shape. The advice of experts is welcome, as is some help from medical science. We tend to see the future of medicine in terms of our personal hopes and desires. Daniel Callahan, a pioneer of bioethics in the U.S., argued repeatedly that that’s not right. We should be aiming at improving the health of the population as a whole.
Sometimes the two coincide. Most vaccines protect each of us individually against what could be a life-threatening disease. They also protect the community against the potentially devastating effects of an epidemic. Pretty good value for what’s often no more than a few cents per person.
On the other hand, there are medicines being used to treat very rare conditions that cost $700,000 or more per year per patient. Would a radical shift in healthcare priorities mean drugs like these wouldn’t be developed? Perhaps. It’s not likely to occur though. One thing that stands in the way is empathy. The story of a single desperate patient can move mountains.
But without going as far as Callahan suggested, we really do need to look critically at how medicine progresses.
Hype and Hope
There is a common tendency to exaggerate the likely benefits of ‘promising new treatments.’ This starts long before they actually reach the market. One thing that plays a role is physicians’ desire to give patients hope. Reluctance to accept the current limits of what they can offer. There’s no doubt that economic interests also play a role. Med-tech start-ups try to attract venture capital or prepare for a stock-market launch. And we certainly mustn’t forget media enthusiasm for gee-whiz technology.
We heard recently that in a few years, there’d be vaccines against cancer and heart disease. Who could fail to be excited by that? Your or my life could be among the millions they’d save, of course, we’re delighted. Perhaps we’re less keen to hear about for whom they probably wouldn’t work, or about potential side effects. We don’t stop to wonder what exactly they’d do. Preventing us from dying isn’t the same as preventing us from getting sick in the first place.
The fabrication of hope, that is what it really is, can actually have serious side effects. It can lead to patients (and their carers) expecting too much, resulting in disappointment.
For example, for years a great deal has been claimed for gene therapy. One of the conditions for which it’s being tried out is hemophilia.
Gene therapy for hemophilia
A recent literature review explains that though gene therapies may soon become available, they’re unlikely to do all that’s claimed for them. Instead of offering a permanent cure, they’re likely simply to alleviate symptoms “possibly with burdensome side effects. The treatment may also create psychosocial challenges that require support.”
Medical professionals want to do the best they can for the patient they are treating. They’re committed to offering what professional opinion regards as the best available treatment. Of course, they’ll warn of the risks of possible side effects. But they’ll be less focused on non-clinical issues, like those psychosocial challenges. Or perhaps still more problematic, the possibility that a treatment (such as gene therapy) could affect someone’s personality or sense of identity?
Opposition to treatment
This is most problematic in relation to conditions that aren’t universally accepted as pathological at all. Two such conditions come immediately to mind. There are certainly others.
Autism
One is autism. Having a child diagnosed as having a (severe) autism disorder represents a major challenge for any parent. What to do? In this situation, most parents see autism as a pathology, for which treatment is crucial for alleviating the child’s suffering. I doubt many parents are sympathetic to the claims of the neurodiversity movement, or the professionals who back it. The fact is that numerous high-functioning adults with autism argue that children shouldn’t be treated at all. That autism is best regarded as a different way of being in the world. Children with this condition should be taught to embrace their neurodiverse identity. Parents likely feel advice like that simply ignores their daily struggles.
Deafness
In 1990 the FDA approved cochlear implants for deaf children. Newspaper headlines such as ‘An end to deafness’ were not uncommon. Little wonder that many parents of deaf (born) children expected a miracle. Their small child would soon hear and speak ‘just like everyone else.’ Ironically, the development of the implant coincided with the emergence of a new spirit of emancipation among deaf people. Inspired by the new field of sign language research, the idea of a deaf community was gaining ground. With it came commitment to deafness as an identity, and resistance to the idea of treating it.
Shortly afterwards, I began what I naively thought would be a quick study of the dispute. Implanting children was in its infancy then. Surgeons setting up implant programs were focused on the individual child. On its parents’ hopes for their child’s future. They rarely had much contact with the local deaf community.
Soon after I began, one ENT surgeon said to me, with total conviction, that eventually all deaf children would be implanted. That no one could stop it. We know now he wasn't far off the mark. But it wasn’t clear at that time how effective the implant would be, or for whom exactly. It wasn’t clear who would actually want it, or what effect the arguments of the deaf community would have.
I’ve often wondered whether his certainty, at so early a stage, doesn’t point to something quite problematic in the dynamics of medical progress.
Progress isn’t as straightforward as we like to think.
Reviewed by Lybi Ma
KEY POINTS-
We think of medical progress in terms of our personal hopes and fears.
What if it focused on improving the health of the community instead?
Medicine that promises too much has potentially serious side-effects.
Are arguments for ‘limits to medicine’ taken seriously enough?
We’re all in favor of progress, aren’t we? If we think of progress in medicine, we imagine new possibilities for curing diseases. New ways of slowing down physical and mental decline. Better protection against genetic and environmental risks. As we age, we do what we can to keep our bodies and our minds in good shape. The advice of experts is welcome, as is some help from medical science. We tend to see the future of medicine in terms of our personal hopes and desires. Daniel Callahan, a pioneer of bioethics in the U.S., argued repeatedly that that’s not right. We should be aiming at improving the health of the population as a whole.
Sometimes the two coincide. Most vaccines protect each of us individually against what could be a life-threatening disease. They also protect the community against the potentially devastating effects of an epidemic. Pretty good value for what’s often no more than a few cents per person.
On the other hand, there are medicines being used to treat very rare conditions that cost $700,000 or more per year per patient. Would a radical shift in healthcare priorities mean drugs like these wouldn’t be developed? Perhaps. It’s not likely to occur though. One thing that stands in the way is empathy. The story of a single desperate patient can move mountains.
But without going as far as Callahan suggested, we really do need to look critically at how medicine progresses.
Hype and Hope
There is a common tendency to exaggerate the likely benefits of ‘promising new treatments.’ This starts long before they actually reach the market. One thing that plays a role is physicians’ desire to give patients hope. Reluctance to accept the current limits of what they can offer. There’s no doubt that economic interests also play a role. Med-tech start-ups try to attract venture capital or prepare for a stock-market launch. And we certainly mustn’t forget media enthusiasm for gee-whiz technology.
We heard recently that in a few years, there’d be vaccines against cancer and heart disease. Who could fail to be excited by that? Your or my life could be among the millions they’d save, of course, we’re delighted. Perhaps we’re less keen to hear about for whom they probably wouldn’t work, or about potential side effects. We don’t stop to wonder what exactly they’d do. Preventing us from dying isn’t the same as preventing us from getting sick in the first place.
The fabrication of hope, that is what it really is, can actually have serious side effects. It can lead to patients (and their carers) expecting too much, resulting in disappointment.
For example, for years a great deal has been claimed for gene therapy. One of the conditions for which it’s being tried out is hemophilia.
Gene therapy for hemophilia
A recent literature review explains that though gene therapies may soon become available, they’re unlikely to do all that’s claimed for them. Instead of offering a permanent cure, they’re likely simply to alleviate symptoms “possibly with burdensome side effects. The treatment may also create psychosocial challenges that require support.”
Medical professionals want to do the best they can for the patient they are treating. They’re committed to offering what professional opinion regards as the best available treatment. Of course, they’ll warn of the risks of possible side effects. But they’ll be less focused on non-clinical issues, like those psychosocial challenges. Or perhaps still more problematic, the possibility that a treatment (such as gene therapy) could affect someone’s personality or sense of identity?
Opposition to treatment
This is most problematic in relation to conditions that aren’t universally accepted as pathological at all. Two such conditions come immediately to mind. There are certainly others.
Autism
One is autism. Having a child diagnosed as having a (severe) autism disorder represents a major challenge for any parent. What to do? In this situation, most parents see autism as a pathology, for which treatment is crucial for alleviating the child’s suffering. I doubt many parents are sympathetic to the claims of the neurodiversity movement, or the professionals who back it. The fact is that numerous high-functioning adults with autism argue that children shouldn’t be treated at all. That autism is best regarded as a different way of being in the world. Children with this condition should be taught to embrace their neurodiverse identity. Parents likely feel advice like that simply ignores their daily struggles.
Deafness
In 1990 the FDA approved cochlear implants for deaf children. Newspaper headlines such as ‘An end to deafness’ were not uncommon. Little wonder that many parents of deaf (born) children expected a miracle. Their small child would soon hear and speak ‘just like everyone else.’ Ironically, the development of the implant coincided with the emergence of a new spirit of emancipation among deaf people. Inspired by the new field of sign language research, the idea of a deaf community was gaining ground. With it came commitment to deafness as an identity, and resistance to the idea of treating it.
Shortly afterwards, I began what I naively thought would be a quick study of the dispute. Implanting children was in its infancy then. Surgeons setting up implant programs were focused on the individual child. On its parents’ hopes for their child’s future. They rarely had much contact with the local deaf community.
Soon after I began, one ENT surgeon said to me, with total conviction, that eventually all deaf children would be implanted. That no one could stop it. We know now he wasn't far off the mark. But it wasn’t clear at that time how effective the implant would be, or for whom exactly. It wasn’t clear who would actually want it, or what effect the arguments of the deaf community would have.
I’ve often wondered whether his certainty, at so early a stage, doesn’t point to something quite problematic in the dynamics of medical progress.
Progress in Medicine: Balancing Between Hope and Hype.
Progress isn’t as straightforward as we like to think.
Reviewed by Lybi Ma
KEY POINTS-
We think of medical progress in terms of our personal hopes and fears.
What if it focused on improving the health of the community instead?
Medicine that promises too much has potentially serious side-effects.
Are arguments for ‘limits to medicine’ taken seriously enough?
We’re all in favor of progress, aren’t we? If we think of progress in medicine, we imagine new possibilities for curing diseases. New ways of slowing down physical and mental decline. Better protection against genetic and environmental risks. As we age, we do what we can to keep our bodies and our minds in good shape. The advice of experts is welcome, as is some help from medical science. We tend to see the future of medicine in terms of our personal hopes and desires. Daniel Callahan, a pioneer of bioethics in the U.S., argued repeatedly that that’s not right. We should be aiming at improving the health of the population as a whole.
Sometimes the two coincide. Most vaccines protect each of us individually against what could be a life-threatening disease. They also protect the community against the potentially devastating effects of an epidemic. Pretty good value for what’s often no more than a few cents per person.
On the other hand, there are medicines being used to treat very rare conditions that cost $700,000 or more per year per patient. Would a radical shift in healthcare priorities mean drugs like these wouldn’t be developed? Perhaps. It’s not likely to occur though. One thing that stands in the way is empathy. The story of a single desperate patient can move mountains.
But without going as far as Callahan suggested, we really do need to look critically at how medicine progresses.
Hype and Hope
There is a common tendency to exaggerate the likely benefits of ‘promising new treatments.’ This starts long before they actually reach the market. One thing that plays a role is physicians’ desire to give patients hope. Reluctance to accept the current limits of what they can offer. There’s no doubt that economic interests also play a role. Med-tech start-ups try to attract venture capital or prepare for a stock-market launch. And we certainly mustn’t forget media enthusiasm for gee-whiz technology.
We heard recently that in a few years, there’d be vaccines against cancer and heart disease. Who could fail to be excited by that? Your or my life could be among the millions they’d save, of course, we’re delighted. Perhaps we’re less keen to hear about for whom they probably wouldn’t work, or about potential side effects. We don’t stop to wonder what exactly they’d do. Preventing us from dying isn’t the same as preventing us from getting sick in the first place.
The fabrication of hope, that is what it really is, can actually have serious side effects. It can lead to patients (and their carers) expecting too much, resulting in disappointment.
For example, for years a great deal has been claimed for gene therapy. One of the conditions for which it’s being tried out is hemophilia.
Gene therapy for hemophilia
A recent literature review explains that though gene therapies may soon become available, they’re unlikely to do all that’s claimed for them. Instead of offering a permanent cure, they’re likely simply to alleviate symptoms “possibly with burdensome side effects. The treatment may also create psychosocial challenges that require support.”
Medical professionals want to do the best they can for the patient they are treating. They’re committed to offering what professional opinion regards as the best available treatment. Of course, they’ll warn of the risks of possible side effects. But they’ll be less focused on non-clinical issues, like those psychosocial challenges. Or perhaps still more problematic, the possibility that a treatment (such as gene therapy) could affect someone’s personality or sense of identity?
Opposition to treatment
This is most problematic in relation to conditions that aren’t universally accepted as pathological at all. Two such conditions come immediately to mind. There are certainly others.
Autism
One is autism. Having a child diagnosed as having a (severe) autism disorder represents a major challenge for any parent. What to do? In this situation, most parents see autism as a pathology, for which treatment is crucial for alleviating the child’s suffering. I doubt many parents are sympathetic to the claims of the neurodiversity movement, or the professionals who back it. The fact is that numerous high-functioning adults with autism argue that children shouldn’t be treated at all. That autism is best regarded as a different way of being in the world. Children with this condition should be taught to embrace their neurodiverse identity. Parents likely feel advice like that simply ignores their daily struggles.
Deafness
In 1990 the FDA approved cochlear implants for deaf children. Newspaper headlines such as ‘An end to deafness’ were not uncommon. Little wonder that many parents of deaf (born) children expected a miracle. Their small child would soon hear and speak ‘just like everyone else.’ Ironically, the development of the implant coincided with the emergence of a new spirit of emancipation among deaf people. Inspired by the new field of sign language research, the idea of a deaf community was gaining ground. With it came commitment to deafness as an identity, and resistance to the idea of treating it.
Shortly afterwards, I began what I naively thought would be a quick study of the dispute. Implanting children was in its infancy then. Surgeons setting up implant programs were focused on the individual child. On its parents’ hopes for their child’s future. They rarely had much contact with the local deaf community.
Soon after I began, one ENT surgeon said to me, with total conviction, that eventually all deaf children would be implanted. That no one could stop it. We know now he wasn't far off the mark. But it wasn’t clear at that time how effective the implant would be, or for whom exactly. It wasn’t clear who would actually want it, or what effect the arguments of the deaf community would have.
I’ve often wondered whether his certainty, at so early a stage, doesn’t point to something quite problematic in the dynamics of medical progress.
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