Traditions

We humans love traditions. To do something again that we have done in the past gives us comfort; it is a way of connecting the past with an evermore confusing present. Some traditions are personal and some get adopted by others and become societal. We teach them to our children to have them carried forward. Thanksgiving is one of those traditions that connects us to the early days of Europeans in North America. The harvest time of year, the turkey, the pumpkin pies all remind us that life was difficult and the help of our neighbors was sometimes needed.

My Muse and I have our own Thanksgiving tradition. We begin the day with a Thanksgiving Day race, a 5k race that we did yesterday with 1000 of our best friends (most of whom we had never met before). When the race is over, we rush home to get the turkey in the oven. It never seems like there will be enough time between the race and when people start to arrive for the other half of the tradition: the friends and neighbors potluck. But, it always works out, and we have learned to trust that the turkey will be ready on time. We are never quite sure who will show up or what they will bring (no pre-planning for the potluck here–just bring what you want). We are always surprised that we have way too much (well, that isn’t really a surprise), and that we have a balance meal. We never end up with 15 salads or deserts and nothing else.

Some didn’t make it this year. The neighbors who run a Chinese restaurant had a family obligation. One friend was suddenly in the hospital. One neighbor who just had knee replacement showed up on her walker. But, some new folks appeared and said they would be back next year. So, the tradition continues to build and will continue to be a part of how we connect the past to the present and our neighbors to ourselves. That continuity keeps us grounded and helps make sense of life.

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Why Do I Still Run?

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It was pretty hard to get myself out for a run this morning. It was chilly. There were other things to do. I just didn’t feel like it.

“But, you need the exercise.”

“It’s a beautiful day.”

“You’ll enjoy it once you get started.”

“You’ve got a race coming up.”

All true, but the race is only a 5k. No more half marathons until next year, and a 5k hardly counts. Those motivators didn’t help. My Muse says we do this “because we can.” Too simple. It’s more complicated than that.

I used to say that I started running in high school, and by the time I finished college, it was so ingrained that I forgot to stop. That was a long time ago, and I still haven’t stopped. So, one reason is that it is something that I have “always” done. It is part of me, and if I give it up, I will lose part of me.

Part of it is a desire I expressed to myself when I changed my attitude toward running sometime around age 40. I was running a lot and was hanging with a pretty fast bunch of distance runners. I felt guilty when I missed a day, but I realized I wanted to still be running when I got to 80. Because 80 was so far away, that realization changed my whole attitude toward the necessity of running today. Very relaxing. I didn’t change how much I ran, I only dropped the guilt when I was too busy to get out.

Part of my need to run comes from the joy of running with my children and grandchildren—all of whom are much faster than I. We have had the pleasure of going to a big race and having all of them show up to participate. There is something about the experience of going out for a long run with 20,000 or so of your new best friends that can’t be duplicated.

But none of these reasons is sufficient to get me out. None of these gets me past the increasing difficulty of making progress in training. None of these gets past the irritation of race times that keep getting slower. The thing that gets me out these days is fear. It isn’t “because I can.”  It’s “who would I be if I couldn’t.” Being unable to continue running represents to me an irreversible step toward old age and infirmity—a step I do not want to take.

Fortunately, there is nothing to suggest I will soon be unable to run. I’m free to continue denying that life happens. My declining performance can always be fixed by more and better training. The sky is always blue, and I just keep getting younger.

Didn’t I just write a post where I said I was through with denial? Drat. Wrong again.

Medical Records

@”Victo Dolore” recently posted an entry (here) in which she “confessed” that she wanted to move from doctoring (except for the part about seeing patients) to health policy or electronic health records (EHR). These are both areas that need vast amounts of attention. One comment that I have on EHR is that to be safe and effective, ultimately, a universal patient identifier (UPI) will be needed.

I spent many years in computer security, and one of the things that happened near the beginning of that time (in the ’70s) was the war over the use of the Social Security Number (SSN) as a universal identifier for all sorts of things government related (or even commercial). That war took years and, in the end, was a loss for everybody—activities that really needed the SSN didn’t get it; activities that didn’t need it got it; and the SSN was diminished as a result.

I predicted then, and still believe, that a universal identifier is needed for patient records, and that the battle over such a concept will be bigger and longer lasting than the SSN battle.

The UPI battle hasn’t really begun yet, but a pair of columns in the New York Times, even though they didn’t discuss this issue, suggested to me where it may occur. In this morning’s Times (2014/11/09) Elisabeth Rosenthal had a column entitles Medical Records: Top Secret. This was the second column dealing with a man named Peter Drier, who received a surprise bill of $117,000 from an out-of-network surgeon who assisted in his back operation—a surgeon he had never heard of. That situation begs comment on several levels, from ethical to legal, but that is not my objective here.

Rosenthal’s second column, was about the difficulty Mr. Drier had getting his own medical records from the hospital. It took him 6 weeks during which the hospital hid behind HIPPA (the privacy protection law intended to protect Mr. Drier, not the hospital), charged him $100 for copying (he would have needed a truck to carry $100 worth of copying), and made him appear in person to obtain the records. Ok, questionable legal ground—the hospital had 30 days to comply, according to the law, but when the clock starts is unclear, outrageous fee, and murky ethical ground (well, not really very murky), but in the end he got the records.

Suppose that, instead of the hospital, he had been dealing with his insurance company.

You can suppose that the insurance company had access to pretty much all of the medical record—they had to assess it to decide what they would pay. But, you don’t know what they did with the records. Did they look at them, make a decision and then destroy what they had. I don’t think so. Would you do that if you might be required to answer questions later? How do you know that the records they attached to your name were actually records pertaining to you (this is where the UPI comes in). How would you find out? If you suspected an error (even organizations as well meaning as your insurance company make mistakes), how would you get it corrected? You have access to your credit records and a mechanism to correct mistakes (it ain’t easy, but it is possible). Do you have access to the records held by your insurance company and a mechanism to correct them? If those things exist, I’ve never heard of them. And, the insurance company isn’t going to volunteer to give them up. Legislation will be required. Strong public opinion will be required to prevail in the face of lobbyists at least as well funded as oil company or banking lobbyists.

So, here’s my unsolicited career advice to Victo Dolore (my unsolicited advice to the rest of you is to go and read her blog , it’s pretty interesting): forget health policy (98% politics) and go do something about electronic records (probably no more that 75% politics, woo hoo). We badly need help in that area. We need it so badly that we don’t yet even realize that we need help. And, you won’t have to work with Ted Cruz.

Speeches

I have written about my daughter before. She is a tough cookie, not to mention talented and smart. Her research involves the neurotransmitters involved in Parkinson’s and Alzheimers. Her cancer has made all of that work personal.

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A week ago I was asked to speak at a kick-off event for a local relay for life event. I agreed and thought that I would have no problem speaking. As it turned out, I cried throughout the whole thing. But, I do believe that I made an impression and people were ready to raise money. Here is what I said:

I appreciate the invitation to speak today. Not once did I think that I would use the word cancer in reference to myself. As a neuroscientist, I had considered my probability of ending up with Parkinson’s disease or Alzheimer’s disease but never cancer. Cancer was for other people not me. I have no family history of breast cancer, I have been an avid runner for 25 years, I enjoy yoga, I love vegetables, I have a healthy weight and I have never smoked. So, when I was told on…

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All Saints Day

It’s All Saints Day, a day to remember those who have gone before.

I remember with gratitude my parents and grandparents who shaped me and helped me become the person I am. I remember and thank my Muse’s parents and grandparents who shaped her. I never met any of them but I am grateful for the way they shaped her.

I am also grateful for the opportunity to continue to use their legacy of teachings to help shape our children and grandchildren.

The “End of Life”

End of life is a phrase with several meanings, each of which is a complex set of issues. I have watched my parents age, decline,and finally, pass. Have watched their worlds close in as they aged: world travelers after retirement; later San Diego county; then their town; their house and yard; finally, inside their heads. I see how that goes as one’s interests become more local and more immediate and the rest of the world fades in importance.

I have passed through my own spring and summer and am now in the fall of my life. I don’t see any New Year’s baby yet, and I’m looking for a long Indian Summer, but it will turn cold and I’ll want to be inside by the fire, surrounded by art, with a glass of wine, and a good book (or 50). So, I’m pretty interested in how to keep life being good for as long as possible. I’m through with denial (see my post on Denial for how much and how long I’ve been able to avoid all of this), but I have been thinking about the issues–ugly as they may be–for quite a while.

My Muse is a professional musician, or possibly an angel disguised as a musician. She works for a hospice and plays her harp for patients in their last hours or at most their last days. She is called in to help with pain management when, often, drugs no longer help, or she may help with “terminal agitation” when the reality of the situation has become apparent and denial no longer works. She is very good at this and has helped many patients achieve a graceful passage. This is one of the meanings of end of life, and an area where most of us would agree on what is important. The issue is how to achieve a graceful passage; what must we do and how should we so arrange our lives in advance to make this end is possible.

But, there is another, often much longer, period of life, leading up to those final days and hours that can determine how graceful our passage will be or whether a graceful passage is even possible. The beginning of that period is sometimes difficult to identify. It may begin when others start to feel that they need to check on you frequently, or when they become concerned because you are still driving, or when you begin to need help with activities of daily living. This longer period can also be referred to as the end of life. If you are lucky, it will come on gradually. If you aren’t, it may begin catastrophically with a heart attack or a stroke or a bad fall. If it begins with a catastrophe, you may be left with a life situation you do not like and do not want, but can no longer change. That is why I’m taking up these issues now.

I have just read an excellent new book, Being Mortal: medicine and what matters in the end, by Atul Gawande (Metropolitan Books, 2014), a surgeon from Boston, that leads me to thinking about these issues in greater detail. Another interesting piece that prompts me is Why I Hope to Die at 75, by Ezekiel Emanuel in the September Atlantic. They bid me for different reasons: Gawande because he is objective and lays out the issues so nicely; Emanuel because the pessimistic position he lays out, while carefully argued, is wrong.

I know that it is time for me to be working through the coming decisions, but you may think that you are “too young,” or you may not yet have given up the notion that you are immortal. Or, you might be starting to think about these issues on behalf of your parents because they still think they are immortal. Or you might already have assumed responsibility for your parents’ care and are wondering if there is anything better that can be done for them. How lucky you are in that case to be given the opportunity to take the lessons you learn for this experience and apply them to your own case. Your time is coming, unless, of course, you actually are immortal.

I’m thinking of this as the beginning of a series of posts about aspects of aging, maintaining a high quality of life (whatever that might mean to you), dignity, and control. I invite you to join a conversation about these subjects. What are your thoughts?