Why should we research non-terminal conditions?

Medicine exists to improve the lives of human beings. That doesn't necessarily mean keeping people alive.

Mindblowing, yeah.

 

Because people with money get to choose how to spend their money...

 

Think about the morbidity and associated cost for many chronic conditions.
Also, with proper treatment that we already have, HIV is now essentially a chronic disease. Should we stop researching HIV? Of course not.

 

But the people with terminal conditions are going to die anyway. Why should we spend money on those conditions when we can improve the lives of people that are going to be around to enjoy them?

 

so is it a fair statement to say you value having life over the having quality of life?

There's a pretty wide distribution of disabling and terminal diseases. Nobody likes any of them, so they all get funding. Try not to think too hard about it, you wind up saying one person's misery is more important than another's.

 

Seriously?

 

Because life is a terminal condition.

 

1) I'll personally take a higher quality of life over a slightly longer crappy quality of life. Obviously there is a balance here, but yeah, people want their lives improved more than they just want to live longer. If that wasn't true no one would smoke, no one would drink more than a glass a day, and the French Quarter in New Orleans wouldn't exist.

2) We seem to have a higher success rate with the non-terminal stuff. You mentioned walking. Advances in orthopedics, especially joint replacemnt, have made our grandparents basically the first generation of seniors that are, by and large, fully moblie well past the age of 60. On the other hand, with a very few exceptions, we've had a pretty poor track record on cancer, for all the research dollars we pour into it.

Also, do you think that it's a misallocation of resources to spend money on non-medical quality of life things when there's still research to be done? What about people who buy televisions, or go on vacations, or whatnot? Should we heavily tax all of those people so that the money they would have wasted on enjoying life can go to cancer research? I mean that sort of thing is considerably less essential than the use of your legs, which you seem to think we can make due without.

 

Unless we become immortal, we will never eliminate terminal conditions. If we cured cancer tomorrow, something else would move into the top 10 killers. So let's stop throwing money at these lost causes and focus all of our research into better video game systems and HD TV's. That's something everyone can enjoy.

 

S/He is very serial.

 

Quality of life is important too.

 

quality > quantity

Keeping people alive just so that you can say that they're alive doesn't do it for me. I want to see people enjoy a good quality of life. I had a patient a few months ago with a severe spinal cord injury, and because his chance for improvement is nearly nil, he'd like care withdrawn. He's alive, but it's not even worth it to him.

 

I'm willing to bet that people with cerebral palsy, paraplegia, etc, have lower life expectancies. How could you explain this, other than that these conditions kill people indirectly?

Furthermore, if we have a bunch of people walking around with chronic illnesses that impede their ability to contribute to society, except there are more of them because no one is dying anymore... who's going to fix THAT disaster?

 

Actually, severe cerebral palsy is associated with a 60% mortality by age 20 (see: Clin Perinatol. 2006 Jun;33:545-55.).

Research into orthopedic care and procedures, antibiotic management of recurrent infections, etc, has not only enhanced the quality of life for folks with this condition, but also has improved the length of survival.

As a side note, much of the research that is done on non-lethal conditions (e.g. Crohn's) is supported by private donations to private foundations. Does it trouble you that people with such conditions wish to use their money to support research to improve the quality of their own lives and that of those they care about?

 

Well...
Like most things, I dont really have an answer, just ideas.

Youre basic assumption is that it is more important to preserve life than it is to maintain a good quality of life, and then die. I dont nescessarily agree with that.

Conditions that are high morbidity vs. high mortality change over time. Not too long ago, AIDS and ESRD on HD killed you right quick... now those patients survive for decades. Before that the Flu and TB killed everyone. Respiratory Arrest used to be the definition of death... now those patients can live forever.

We simply do not have cures for most diseases. We do not have a cure for any virus, from the common cold to ebola. We cant cure HTN, DM, cancer, arthritis, lower back pain, or any neurological or psychiatric illness. Actually Alzheimers IS the 6th leading cause of death.

I'd say that it is of at least equal importance to reseach diseases with high morbidity.

When you talk to enough patients, you'll realize that many of them would rather be dead, than live in agony.

 

I think indirectly the OP's question asks why we should fund things at all whose usefulness is not readily apparent. Why on earth would anyone care about the electrical conductive properties of say silicon? Why would some mathematician in the 19th century 'waste' his time researching binary number theory. To us, in the 21st century the fruits of 'pure' (as opposed to applied) research are readily apparent. OP, there are lots of things that are researched because there may be incidental discoveries which prove extremely useful in the short term. There may be important discoveries which, while unimportant now, may define the practice of medicine in 30 years. The thing about research is you never know what you're going to discover, or how it'll be usefu which is the whole point.

 

That's the first thing that crossed my mind. But it's a fair question and I think that if someone who is potentially going into medicine and not purposefully trolling is thinking it, then it should be answered as best as possible (which is not by me).

Medicine isn't about prolonging only the quantity of life but also the quality of life. If you can't have a quality of life, then there really isn't any point of having a life. I think that as a society we are at least somewhat obligated ethically to help others who are in are lacking a qol (i.e. parapalegics, etc.)and distribute our healthcare resources as fairly as possible.

 

Because if we chose to research AD and ignore, say, herpes simplex, people might not have figured out that the two might have something to do with each other:

http://www.sciencedaily.com/releases/2008/12/081207134109.htm

We're not just trying to cure disease, we're trying to figure out how we work. All diseases teach us about normal biological processes that are widely applicable. The more we know about how things are supposed to work, the more efficient we can be solving things that don't work.

To phrase it another way, a good reason not to take all the money we spend on physics research and put it towards medicine is because even the study of the physical universe has cross-applications - X-rays, MRI, proton beam accelerators, gamma knife therapy...

Also, it's just ridiculous to assume that you can put all your research money in one basket and get an additive effect. All you'd get is a saturation of the field, a lot of concurrent experiments looking at the exact same thing, a lot of interesting but redundant results excluded from journals that no one reads (because they're all about the same thing), and a lot of medical professionals who happen to treat non-terminal diseases sitting on the sidelines waiting in a wasteful queue for research dollars that will never come in their lifetime (ever?). And then, at the moment of triumph, when we cure cancer (or whatever) - suddenly the entire scientific community is out of work. You basically have to reboot all science, and everyone starts from scratch learning about a completely new disease. Silly.

 

I agree

and

good point

 

So survival is the only important goal, and reducing suffering doesn't matter at all? I can't help but wonder if you'd see it differently if you were paraplegic or had one of those other nonterminal conditions.

In the case of most of the terminal conditions, research advancements would more likely lead to prolonging survival rather than curing the condition. So it's not really "research that would cure a cancer patient" vs "research that would improve quality of life for paraplegics/diabetics/whoever." It's more like "research that will keep the cancer patient alive an extra 8 months" vs "research that will improve the quality of life for a paraplegic/diabetic/whoever for the next 20 years."

Besides, most of those nonterminal conditions have an effect on mortality down the road; they take years off people's lives. So in a sense they're terminal too - just a lot more slowly. Where do you draw the line - is HIV still considered a terminal illness? How about diabetes? Hypertension? Even things like CP or paraplegia can and do have complications that lead to premature death.

How about, say, schizophrenia? We can't cure it, but medicines can improve quality of life considerably over the old days when people were basically just heavily sedated and warehoused in institutions. Was the research that led to antipsychotic medicines money misspent, since those patient's weren't going to die of their condition?

To me it's a continuum. I'd rather see research dollars go to curing cancer than say, better treatments for acne, but helping paraplegics to walk or diabetics to avoid losing their feet or kidney function seems pretty important too.

 

Especially since a diabetic with no feet has a decreased life expectancy, basically making their condition indirectly responsible for their demise.

 

You know those boring organic chemists were the ones that helped manufacture many of the modern antipsychotic drugs we use that were based on aniline dyes. Methylene blue, an aniline dye, is also used in other unrelated conditions. Linezolid, a novel treatment for MRSA, was originally developed as a MAOI antidepressant.

Science is about learning about mechanisms of function and action in addition to just disease. You have to learn the basic sciences in order to understand disease processes. You have to understand the basis of DNA replication in order to understand cancer. You must have an understanding of valence electrons and acid base in order to understand the mechanisms of acid base imbalances with acidosis and alkalosis.

But to the main point, medicine is not about saving lives at all. It is about easing the suffering of not only your patients but also their families and community. When your patient dies, it is your job to comfort the family. Of course this gets into the whole art of medicine but I guess this is off topic. The list of conditions you are looking at are of course neurological. Wouldn't you like to know why it happens and how to prevent that kind of irreversible damage from occurring? SCI is made worse from the secondary attempt at repair and scarring produced by glial cells. If there was some way to stop it, that would be a breakthrough in neurology. There is also a disconnect on your list of seemingly terminal conditions and what the actual causes of death in the population. If you only knew how little is spent on preventing the actual causes of death in this country you would be angry.

 

Good post. Your closing line is particularly telling. A greater emphasis on prevention must become a part of medicine's future. Healthcare reform can't be only about access to care and who will pay for it, but must also address the focus of care itself. (Off topic, I know)

 

This goes back to the ancient questions, what makes good medicine and what makes a good doctor?

Is good medicine what saves lives or what relieves the most suffering?
Is a good doctor one who saves lives or decreases suffering?

Also, just because something is fatal doesn't mean it is necessarily the best to focus on. Lots of things cause death, but to a very small number of people. This begs the question, how much suffering is worth the price of a small number of lives, or how many people must be dieing for us to ignore the suffering?

 

If your argument OP is that we as a society should be more interested in curing cancer than getting breast implants I wholeheartedly agree. But that's not your argument. I'm not even sure what your argument is, since it transforms from

to giving the OK for

This view begs any number of questions. Is sight more or less a luxury than basic mobility? Which side of the imaginary line do we list Alzheimer's? Do you rate a wounded Marine more or less worthy of research dollars for robotic prosthetics than curing a patient of lethal pancreatitis due to years spent boozing? Play God on those would you please?

Scientific research (both academic and commercial) is a free market enterprise. I think this is an interesting thread, but honestly after reading your follow-up the first thing I thought was you were less interested in the discussion than the inevitable cheap shock value of disclosing that you actually had one of the diseases for which you would, were you some omniscient research god, yank funding.

And talking about healthcare reform, perhaps the biggest downfall of modern medicine is this focus on prolonging life at all costs, quality be damned. Now everybody's grandma spends her last months and years in and out of the ICU, eating up (at a cost you wouldn't believe) the best and wholly fruitless care our taxes can buy.

I think you missed the point of that particular post completely.

 

Huh, well I know I'm in the minority here but I guess I disagree. Not that I'm for cancer or anything but I've always thought the stuff going on in plastics is some of the most interesting work being done in medicine. That an ortho, artifical limbs and all. Quality of life has always trumped quantity for me, I guess. FP's nice too, of course, but their quality of life stuff relies mostly on lifestyle change and while that's probably the most important it is conversely the least cool. Also I've always loved science fiction: Neuromancer, GATTACA, that sort of thing, so the idea of making people forever young, or even better than healthy just seemed like one of the coolest things that our generation of physicians is going to get to do.

BTW, that's my prediction for the future of medicine. The guys who are predicting that we're going to be doing nothing but staving off death for the baby boomers have no imagination. I'm guessing that the percentage of physicians specializing in doing completely optional procedures on 100% healthy patients is going to be around half in barely a generation.

 

Reminds me of an old joke in PM&R – you can’t rehab dead people.

I’m going to be diplomatic and say both quantity and quality of life research are equally important. Because often, the two go hand in hand.

Take cancer. Tons of research $ being thrown at it. Many improvements in overall and disease-free survival, to the point where many consider it to have become a chronic disease. The number of cancer survivors is ever-increasing. While cancer treatments obviously save lives, I would argue that quality of life in many of these patients has not necessarily been restored. In fact, it may be worse. In my practice, I see a fair amount of patients with impairments/disabilities/handicaps from the cancer itself, or from its treatments – surgery, chemo, radiation, etc. You ever hear a cancer survivor with radiation induced brachial plexopathy, or lymphedema, or a flail arm following limb salvage surgery, being told by their surgeon/oncologist that “you’re cancer’s cured, you should be thankful”? Doesn’t go over very well.

The problem I think you seem to be struggling with is that quality of life is a rather nebulous thing, difficult to study. Because QOL means different things to different people at different times. You ask chronic SCI patients about having lost their ability to walk. That ain’t the most important thing. It’s about the ability to be independent in their mobility (wheelchair or otherwise) and self cares. The ability to go to the toilet without assistance. The ability to direct their care to their caregivers if they require assistance with ADLs. The ability to be intimate with their partner. The ability to debate on an internet forum. The things that make life worth living. And what's wrong with making life easier?

 

Its not that simple. debilitating impairment vs. quality of life vs. making life easier, is on a continuum and is very dependent on individual perception and attitudes. Something like the ability to walk can be categorized in any of these by different people.

Only After my psych rotation did I see schizophrenia as a quality of life issue, more than a debilitating impairment. With the natural course of the disease, you will always have the risk of a psychotic break that will lead to the patients death, but it seemed to me that since we are pretty good at medicating these patients, we now have a quality of life issue on our hands. How do we get these patients to re-connect with their estranged family and friends? Find work? Cook, clean, shop for groceries?

Loss of ability to walk can be insidious, gradual, sudden, traumatic.... Even at that level, the perception of what this means to the patient will be different.
"Variability is the law of life, and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease" - W. Osler

Did you know that as of this current presidential administriation, bilateral lower extremity amputation in combat will no longer qualify the soldier for VA disability , but PTSD will?

Different patients percieve their medical conditions differently, and its not up to us to make the judgement of which is more important than the other. The only real solution is to fund, research, treat, whatever diseases we as charities, researchers, or clinicians, are passionate about.

 

A major reason why certain diseases are investigated more than others has to do with pure money. It costs a lot of money for a drug to be developed, and so, Pharma has to think, how will we recoup this money?
The number of people who have hypertension is much greater than the number who has cystic fibrosis and so on. In the U.S., relatively few people have HIV/AIDs, but there is a lot of research into it because there are a lot of grants associated with that disease. Malaria is a major disease, but not a lot of research is being conducted into it because it is not a major disease in this country. There has been a push to increase research in malaria.
Potential drugs have been killed because during pharmacokinetic testing, they discovered it is metabolized by the enzyme which has the most genetic mutations.

 

Kudos to the OP. You have presented a very interesting bioethical question, which I think you have discussed respectfully and most responses have been equally respectful and elucidating in their content.
I personally fall into the camp of most of the above who think that perceiving the question of where research dollars go as a "zero-sum" game is missing the point. The previous posters have probably made more eloquent arguments for that than I can.
But for the sake of making it interesting, I'd like to reframe the question in the reverse: Why should research money be spent on terminal conditions over that on non-terminal conditions? Terminal conditions can be quite expensive to treat and, from a utilitarian perspective, the ealier the terminal patient dies, the better off the system/society is, at least from a financial perspective. Improving the quality of life of these patients probably isn't going to keep in the workforce for that much longer (they're terminal, right?). Wheras that money could be better spent on those who are non-terminal, but by improving their QoL, we can keep them in work longer, more productive while they're there, and, maybe as we get further along in our knowledge, reduce the costs associated with their chronic illness/condition; thus benefiting society greatly.

 

Because the fear of death is greater than the fear of non-terminal illness?

 

Because, in addition to all of the other points that have been made, those "N" dollars spent on researching ways to improve quality of life might generate a better return (treatments that actually work) then if the same "N" dollars were spent researching a lethal condition.

 

The health care business seems to thrive on fear. Fear of death, fear of illness, fear of disability. These fears generate what we have in terms of insurances, malpractice lawsuits, etc... The greater the fear the more money people are willing to donate or invest. That's why you have millions of dollars invested in HIV research. What is logical from a financial stand point may not be valid when looking at it from an emotional perspective. It is emotion that drives peoples not just pure logic especially when their loved ones have a fatal illness. So long as death commands great fear in people, you will see more and more research being done in this field.

 

Did anyone read somewhere that now AIDS is no longer a "crisis" issue? I seem to remember reading about this recently... that some international health group made it official.... or am I confabulating?