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good life, information, introspection, life with MS, Living Well, love, Love and Chronic Illness, Rainer Maria Rilke, Uncategorized

Looking Back To Better Plot Our Future

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K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It's a walk she does all the time. Sometimes, we don't have to know or be able to see the details to know where we want to go.
K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It’s a walk she does all the time. Sometimes, we don’t have to know or be able to see the details to know where we want to go.

We are all blind to the future.  Our ability to predict is limited to extrapolating from what has happened recently.  So often, living with a chronic, progressing  condition requires us to make the best choice we can with the information at our finger tips.  If we are introspective enough, we may look back to see the clearest path to better light the way for those behind us.

This past week, I was lucky enough to read about two such reviews of past events.  One was an MS study looking at the impact of delaying treatment of MS by 3 to 5 years versus beginning treatment immediately on deaths due to “MS complications” over 21 years.  The other study was a study of Harvard graduates over 75 years in an attempt to discover what men need to be happy.

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http://multiple-sclerosis-research.blogspot.com/2014/03/cause-of-death-on-interferon-beta.html

On the MS study, it was conducted from 1990 to 2011 looking at the effects of early treatment for MS patients with interferon-beta.  Realize, 1990 was the beginning of a decade which brought us many advancements in MS care, and care for MS has come a long way in the last 20 years.  For the trial, half the patients were given interferon-beta, and the other half were given a placebo.  After three years to five years, the placebo group received  interferon-beta.  I know it is often said to patients, “ MS is not fatal.”  However, of the 69 patients who died in the intervening 21 years, 78% were judged to have died from “MS related complications” including such things as swallowing problems leading to pneumonia, urinary dysfunction leading to UTI’s and septicaemia, falls with fractures, etc.    The mean age-at-death was less than 52 years for the participants who died.  Those in the placebo group experienced an excessive number of MS-related deaths. 

Keep in mind, interferon-beta is less effective than many front line MS treatments now.  In the past, I have advocated against the strict use of dots on an MRI determining the efficacy of an MS treatment.  I want some measures of mobility and cognitive ability to assess whether a drug works.  There have been a few studies casting doubt upon whether our current front line meds work  in terms of preventing disability, but living or dying of MS complications seems like a great measure of drugs efficacy.  The biggest hurdle to using it as an end point is the time it takes to learn the truth.  This was a result from 21 years of patient data.  Still, it seems this study shows the value of dealing with MS as best we can, as soon as we can.  The failure to do so might just kill us, even if we do not understand the exact mechanism by which slowing our MS prolongs our lives.

To my mind, it comes back to my old motto, “Do what you can when you can until you can’t.  Then go to bed knowing you have done all you could, and tomorrow will arrive anyway.”    As I read this study, the ending could be changed to “…OR tomorrow’s tomorrow  may not arrive at all for you.”

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http://www.feelguide.com/2013/04/29/75-years-in-th-making-harvard-just-released-its-epic-study-on-what-men-require-to-live-a-happy-life/

The second study, the one of Harvard graduates, began in 1938 began with over 200 Harvard men and tracked them into their nineties, well beyond traditional retirement years.  It tracked a huge number of variables from political leanings to social lives to various physical conditions.  The study is fascinating if only to track a cohort of men through their lives. 

It’s not exactly a representative sample. The  sample isn’t just college educated men. It’s men privileged enough to go to Harvard. When it talked about the drop in average salary from bad choices, I kept thinking my grandparents would have liked to have a salary big enough to have so far to fall. However, I think many of the points likely apply to us all. Drink and drugs were the mostly likely to derail a good life. The warmth of our relationships in large part determine our happiness, and our health in old age is mostly determined by our decisions and habits as adults not our genetic make-up.

I think of this study with respect to MS, and it is a bit terrifying.  According to the MSresearch blog, MS patients are twice a likely to divorce as healthy people.  Many MS patients become clinically depressed.  So often our ability to relate to health fades.  I no longer remember what it is to be without pain, to be clear headed, to feel strong.  Maintaining warmth in our relationships is a challenge to all sides.  Yet, I can tell you the warmth of my relationships maintains me and my peace of mind.

I would like to think some of my habits will help me as/if  I age.  In the study men’s old age health was better linked with their choices than their genetics.  Towards that end, what began with taking stairs rather than elevators has progressed to running and rowing three or four days a week.  My family has a history of heart disease and cancer, but if one believes this study, what I do matters more.

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As I thought about these two studies this week and doing what seems best with the limited information I have when I don’t have all the answers, I think of this quote:

“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

Rainer Maria Rilke, 1903

Maybe these two studies will let us see a tiny sliver of the answer.  If we are lucky, maybe we will live our way to the next peace of the puzzle.  If we are truly fortunate, we may even have a  chance to light an easier path for those who come after us.

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healthcare information, Innovation in Health Professional Education, late night musing, right question, Uncategorized, value of life

Could Versus Should, The Unasked Question

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Last week, I was interviewing, and I was asked a question for which I should have been

prepared.  Of course saying this, I realize the question is one politicians, medical professionals

and the rest of the country have been trying to answer for years, so it’s not like I expect to have

the perfect answer.  After the interview, the question stuck with me to the point where I wrote

back to the interviewers thanking them for the interview and the question which had stuck with

me after the interview.  The question is one I still find myself mulling almost a week later.

“If you had a magic wand, how would you fix the healthcare system in America?” 

 

After thanking the interviewers, I wrote this:

 

As I was going home and then later putting my kids to bed, I was thinking about the question how would I use my magic wand to fix healthcare.  While I still stand by the answers of single payer and/or universal billing system as helpful to improve aggregate societal health, it occurs to me I failed to mention fixing a large part of the problem.  These are potential band aids, but they assume many decisions stay constant.  As a society we are loathe to talk about the beginning and ending of our lives.  Sex/birth control is a taboo topic and so is death.  With our reluctance to talk about these issues as a society, we all too often fail to ever come to grips with the questions of “should.”  We instead focus on the questions of “can.”  If we can, then we should is the assumption.

 

“Can we save this limb / life?” is the question we ask instead of “Should we save this life or limb and at what cost?”  I saw this when a 21 year old friend was pinned against a guard rail by a car.  She is at the 6-month post accident point, and it is still unknown whether she will ever regain use of the leg.  For less money and pain, she could be using a prosthetic and well on her way through rehab, but the assumption was they should try to save the leg because it may work.  That was how it was presented to her despite at least a 50/50 split amongst my medical friends who say they would have wanted their own leg removed.. 

 

As a society, we do not often ask what the costs will mean for our families or society.  I doubt any of my children’s birth parents ever gave a moments thought to how much the state of MD would pay to keep their children alive and later raised.  I am personally glad they did not.  However, with such a huge portion of the cost of healthcare being accrued in end of life care to prolong life for such short periods of time, at some point society will need to come to a point where we can at least acknowledge the costs and trade offs implicit in our choices or refusal to make choices.  At some point, we need to come to a point where “should” is not simply implied, and a conversation can take place.

 

I would never imply there is a universal correct answer or formula, but if I could wave my wand, I would at least get us to a point where we could talk about what our choices really imply in terms of trade offs.  Is saving my productivity for a year worth more than the cost of a college education?  Is keeping grandma alive in a coma from which she will never wake worth more than keeping a soup kitchen open for the same amount of time?  Should we use stem cells to prolong life?  Perhaps someday we will be able to bio-engineer our systems to be resistant to certain diseases, but should we do so?

 

As I think about the question of fixing our healthcare system, I am beginning to think my assumptions in our conversation were a bit misguided.  A lot of what is trending wrong happens well outside our traditional doctors’ offices and hospitals.  I also recognize much of this is outside the scope of the board except to say the presentation of the trade offs and respecting of patients views of their own trade offs is vital for any doctor.  When I think about what I like most in my neurologist, it is not just that he answers emails.  He has also never second guessed my willingness to take the riskier medications to prolong the time I can maximize my efforts to raise my kids.

 

In any event, thank you for giving me the questions to let me better phrase what I value from my doctors. 

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