Category Archives: decision process

cracked cup, decision process, Hijab, Iran, MS progression, Multiple Sclerosis, Tysabri, Vitamin D

Cracked But Still Holding Water

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It seems we always ask whether the glass is half-full or half-empty, but maybe we should start by asking some questions about the glass itself.  Is it possible the three-quarters empty glass is a miracle?  Seeing it as such might require a willingness to see it as how it is right now while ignoring the leaking cracks in the glass or the angle at which the cup is held.  Both could be strong indications the glass will not remain full for all that long, and the view of one quarter full could be quite Pollyannaish.  
Here is my hard part as I try to gain perspective.  Almost all the new research indicates my MS should be worse.  I have been more or less stable symptom wise for some time now.  Tysabri has worked well.  If my mind is a glass then MS is the event that cracked it.  It appears cracked, but thus far still holding water with a minimum of leakage.  I guess I should happy my glass is not upside down.
Still recent research shows all kinds of medium to long-term impacts of MS.  It appears grey matter damage in MS patients may affect decision-making abilities and more specifically our ability to assess risk.  (http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-impairment-in-ms-affects-risk.html) I know I have somewhat questioned my ability to make decisions on the fly of late, but I take some comfort in my decisions to stay on Tysabri.  It was a decision whose logic remains the same as when I started the treatment.  
Next week, I will go for my 80th infusion.  There is no credible research on taking the drug for as long as I have, but the best guess for my risk of getting PML remain, between 1 in 300 and 1 in 400.  My neurologist and I agree looking at the charts that the risks seem to level off in year 4.  Now for how long these risks remain level is unknown.  Still, the logic was “Give me five good years over 30 crappy ones.  If year 6 is bad, we will deal with it then.”  The logic still applies, and the risks remain steady.  It may be foolish to rely on risks for making life and death decisions, but if one believes in the research above,  what better way is there than to use the decision making process from a time before some of the grey matter loss?  
Until shown otherwise, I will continue to believe the glass remains solid enough for use even if the cracks are sometimes unsightly.
On the crazy correlation versus causation understanding front, I have seen a study on Iran’s MS rates spiking almost seven fold from 1989 to 2005.  (http://www.smithsonianmag.com/science-nature/Is-the-Hijab-Responsible-for-Irans-Spike-in-MS-Cases-204115701.html)  It is worth noting, this article does say they are not telling women there to abandon the Hijab.  They are merely telling women there to take vitamin D supplements.    Granted it appears women there have low levels of vitamin D on average, and it draws the link between the wearing of the Hijab and low levels of vitamin D.  I can follow the logic.  What I have not seen is a link between getting MS and low levels of vitamin D.
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Certainly low levels of vitamin D increase symptoms in patients.  I certainly feel it when I stop taking my vitamin D pills, but I doubt lack of sunlight lead to my getting MS.  I played soccer for 20 years with multiple outdoor seasons every year.  I played outside daily growing up.  In college, I kayaked, hiked and played soccer.  I worked as a landscaper in the summers.  If anything, I maxed out my body’s ability to absorb vitamin D.  
Therefore, I come back to does wearing a Hijab lowering vitamin D levels cause MS or simply bring its symptoms to the forefront.  The most common symptom of MS is fatigue.  Vitamin D helps energize most of the people I know who take it whether they have MS or not.  Could not taking vitamin D alleviate MS’s most common symptom keeping doctors from looking for MS?
I know the increase in accuracy and availability of MRI machines has dramatically increased the ability to diagnose MS, but who looks for MS in non-symptomatic people (outside of researchers looking for a control population)?  How much of the spike is due to diagnostic improvements versus real increases in number of patients with MS.  I just wonder if lower levels of vitamin D are bringing to the surface what is going on in the brain regardless.  Is the damage occurring before the symptoms manifest?  Most people I know with MS talk of their first symptoms as a separate event from the flare that lead to a diagnosis.
I do not know if vitamin D is a shield against all MS activity, but I will still keep using it.  I know I have MS. That means most of what I take in terms of drugs outside of Tysabri is symptom management.  I am just wary of saying taking vitamin D is what has kept the glass from leaking.
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decision process, end of life, euthanasia, government run medicine, pain, utilitarian, value of life

Fear of Intervention in End of Life Care Decisions

Are there questions no individual acting out of self interest can get to a “most correct answer?”  In healthcare, there seems to be a perception that a centralized health system will make poor end of life decisions.  I think about this and I think about nature.  I know dogs will try to wander off from a pack to die.  I also know we as a people who presumably care deeply about our dogs, take great care of them often providing them with a level of care that would leave most of the world appalled.  So for a thinking exercise, lets look at the dog situation from a few different angles to measure outcomes.
 
If one take the approach of minimizing pain, I think we choose to prevent pain far better than the dog would because the dog doesn’t have the knowledge base from which to base an appraisal of all outcomes.  If I look at length of life considerations, having already made the assumption the pain will be treated, I suspect the dog may want go on a bit longer than some of us are willing to permit.  Without pain or consequences of actions like incontinence, I think our 13 year old dog would sit in bed all day, happy with a head scratch or ten.  He may live for 10 more years.  Are people justified at some point saying it’s not enough of a life for their dog to sit here in a virtual coma?
 
Now on what basis do we make this decision?  Surely, it’s not in the dog’s best interest.  We’re killing him/her.  Is it a question of what is right for the family as a whole, to not spend thousands a year treating a dog and the bed and … for the sake of having a tail wag and a sympathetic look?  Now what if that money, effort, and time spent caring for the old dog could be spent raising puppies or taking care of an elderly neighbor’s dog?  Do the opportunity costs matter?  From the perspective of the family or the neighbor, I think we will eventually end up at a different end point than if we simply stick with the perception of the dog.
 
Now I know many would bristle at the comparison of elder care to dog care.  I use the point not to say they are the same but rather in an effort to try and create a framework for answering the question of whether choices should be made at any level limiting the amount of effort we are willing to put forth to save a life.  If the answer is yes, then we can go back to the dog example to look at how we came to assign a value for one more day of the dog’s life in an effort to create a starting logical framework for evaluating our own end of life choices.  Now, who gets to assign the value?  Is it the dog during the pain treatment regimen who won’t feel the pain, either physical or financial, or is it possible some outside decision maker may do a better job?  Is it the patient who wants the $50k per day treatment shown to increase the average life expectancy by three weeks or an outside decision maker who is in the best position to make a good choice? 
 
If one believes the outside decision maker is best equipped to decide, then the question comes down to whom we pick and on what basis.  Do we pick industry whom we expect to maximize profit or a government run bureaucracy with all its perils and inefficiencies? 
 
I relate a lot of my end of life care questions back to dogs, because I get frustrated that we can put an elderly, very sick, or hurt dog down, but euthanasia is against the law in much of the U.S., and few people ever consider the questions linked.   I get tired because we pay lip service to life without ever asking what makes it valuable.  At least when we take some of the “humanity” out of the argument, I can see some broader frame works immerge to possibly determine what can give life a value.
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