I had lunch today with a long-time friend, Mindy. (No, of course that’s not her real name…) It’s been at least a year since we saw each other, and probably two since we had a long conversation.
My heart broke as I learned that her daughter, Lindsay (not her real name either) has, for lack of a better description, gone right off the deep end. I’ve known Lindsay since she was only 11 or 12 — a bright, articulate and curious adolescent. In more recent years, I knew Lindsay had developed eating disorders. She is anorexic and bulimec, and is almost 18 years old.
Lindsay’s eating disorder is only one in a long list of problems she has acquired during the past few years. She has abused drugs, has been in trouble with the law, and is dealing with some other mental health issues as well.
Her mom, Mindy, has struggled to do the right thing, but of course, as parents, we never really know if we are doing the right things by our children. Mindy shared some aspects of how they have tried to help Lindsay. Her findings sounded remarkably like some of the advice I share with you on occasion. It bears repeating, with this different light.
At one point, Mindy contacted programs for girls with eating disorders. There are at least four of them within 150 miles of where Mindy and Lindsay live. Some are day programs. Others are residential programs. Mindy contacted them all — in fact, visited them — and learned that each one happened to be exactly the program Lindsay needed!
At least, that’s what they each told her. Each program was different, using different approaches to treatment, but according to the people who ran them (and, do I need to add, the people who would be paid by Mindy’s insurance if Lindsay attended their program?) each of their programs was just right.
This should sound vaguely familiar. I’ve blogged before about doctors who advise us about treatments, but may have ulterior motives for their recommendations. My misdiagnosis odyssey was my first experience with this. I accused my oncologist of insisting I begin chemo because it was the only way he could make money from me.
My friend Max was told he needed prostate surgery and he should undergo a minimally invasive procedure. After studying options on the internet, he learned that an even less invasive, and less trying form of surgery using a robot might work even better. So he asked his surgeon about it, and was told that NO, he certainly didn’t need to have the robotic surgery…. then learned later that the surgeon he was asking didn’t know how to do the robotic surgery. Hmmmm…..
The literature is rife with examples of doctors making money, sometimes discreetly or even under the table, from the treatment recommendations they make. Whether they are investors in specific medical device manufacturing companies (think artificial body parts) or drug prescriptions (think subsidies from pharma drug manufacturers) — the recommendations being made to you may have more to do with lining a professional’s pocket than your treatment success.
One disclaimer here — I do not believe a doctor would knowingly recommend a treatment that would harm you just to make money. But, I do believe there are times when, all else being almost equal, the first consideration would be money, followed by your success or with little regard to the expense to you.
For example, if you had a history of knee pain, your doctor might recommend your knee be replaced today, even though therapy might help you for another year or two. Of course, he wants to replace it using the brand that pays him a kickback fee. But you don’t know that, nor does your insurance. And don’t forget, most of these artificial joints have a shelf life — meaning — if you get one two years earlier than necessary, you will need a new one two years earlier, too.
It seems to be true enough in healthcare — whether we are talking about brain surgery or eating disorders — that we need to find someone who can help us consider the evidence much more objectively. That means we either have to find someone who can help us with all the options, or — even preferably — someone who won’t handle any of the options. In Max’s case, he was able to find a surgeon who did both the minimally invasive surgery AND the robot surgery. He told Max the robot would serve him quite well.
And in Mindy’s case — she was able to find an advisor in anothor city who had no ties whatsoever to any of the available programs — one who knew all about the other programs in that 150 mile radius, and who was able make a recommendation based on that knowledge. The advisor wasn’t in a position to benefit her own program, so she was able to make a more objective recommendation.
Let’s learn from both scenarios. If you are in a position to need difficult, invasive or long term treatment, make sure you get at least a second opinion. Then find someone who either can provide you with ALL the choices, or someone who doesn’t have a stake in ANY of the choices to help you get more objective advice before you make your final decision.
(The post below was put online this morning at 8:15 EDT. An update at 10 AM — Randy Pausch died this morning. My prayers are with his family.)
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Because so many of you, my readers, have checked here to learn more about Randy Pausch, I bring to your attention a comment made by Claudia, one of you, on my February post.
Claudia tells us there is an update on Randy’s page, and he’s beginning to struggle further with his cancer. Here’s a link to the Randy Pausch Update Page. (and thanks for the heads up, Claudia.)
If you are not familiar with how hospice works, this is a great opportunity to learn about it. Just as we empowered patients learn about taking care of ourselves when we get sick and need medical care, it’s just as important to learn how to prepare to die.
Our well-being during the last few weeks or months of life, and both physically and emotionally, is supported during hospice care. Patients choose hospice care at the point where it no longer makes sense to pursue curative care. Hospice supports palliative care which means keeping the patient pain free and comfortable through the point of death. Learn more about hospice from my colleague Angela Morrow at About.com.
My prayers are for Randy’s comfort and peace, and just as important, his family’s comfort and peace during this time.
PS — For those of you who have left comments on my blog for Randy — please know that I have NO idea if they ever get to him. I’m blogging about him out of my respect for how he has approached his disease and the lessons he has taught all of us. But whether or not he even knows this blog exists is a question mark. You are more than welcome to leave your comments here! But I don’t know if Randy sees them or not.
Like so many of you, my heart breaks at the loss of Tim Russert. On so many levels, we felt a kinship to him. Anyone who has tried to understand American politics or politicians during the past 20 years has gotten to know Tim Russert, as if he were the trusted friend and neighbor who could help us “get” it.
Our world is now less because we don’t have Tim. And It occurs to me that there are some final lessons we can learn about healthcare from him. Just as he helped us understand politics, he can help us better understand healthcare and a healthy life — as follows:
It turns out that Tim was quite watchful over his heart disease. He had been diagnosed, and was under a doctor’s care. He took his meds, he watched his diet, he exercised, and he got his regular check ups. He was a vigilant patient. Our lesson: being a vigilant patient, doing our best to prevent problems, following all the rules for good health, doesn’t mean life won’t still be too short.
We’ve learned that no matter how many studies exist, no matter what tests can be run, no matter what drugs are available, no matter how well we manage our diets and exercise, there are aspects of a body’s function that just can’t be controlled. Our lesson: Medical science still has a very long way to go.
We’ve learned that good quality medical care doesn’t always translate to a longer healthier life. Yes, I think that over a population of people, better care equals a longer life — BUT — Tim had the best care available in this country, and he died way too young, in his prime. Perhaps without that good care, he would have died even younger? We’ll never know… Our lesson: having good medical care is a plus, but it’s only one tool in determining longevity.
We’ve learned that even the best medical care can’t make up for 1) bad genes or 2) bad choices or 3) extreme stress — any or all. What we don’t know is whether Tim was a smoker when he was younger, or whether he survived on hamburgers and greasy pizza before he turned 55. We don’t know if there was heart disease in his family. We can assume his life was quite stressful. Our lesson: we can’t expect medical miracles to overcome bad genes, heavy stress or bad choices.
Tim taught us that we just never know when our final moment will be — and we need to be prepared. His family was the most important part of his life. He left this world making sure they knew exactly how much he loved them — his dad, his wife and his son. Our lesson: At any moment in life, be sure those you love know just how much you love them. It’s important for your own health, and their health and well-being, too.
Tim had very strong spiritual beliefs, and surrounded himself with spiritual people. In the difficult times, believing in a higher being can be very comforting. His family will find some comfort in the coming years based on that faith, too. Our lesson: Life can be enhanced, health can be supported, and comfort can be found through spiritual beliefs.
Finally, we’ve learned from Tim that one’s legacy is about character and a zestful approach to life. We have to believe that in that instant the heart attack struck, when his life passed before him, he knew it was all good, and he would not have changed one moment of who he was, who he loved, what he had accomplished, and the experiences he had enjoyed. Our lesson: live life to its fullest, with spirit, grace, and zest.
My prayers are with his family — His dad Big Russ, his wife Maureen, his son Luke, and his co-workers at NBC. We were all lucky to have him while we did. And we can all thank him for these final lessons about living a quality — and healthy — life.
Those of you who follow my blog know that I’m a fan of Randy Pausch, like so many others. I first blogged about him last September, after watching his Lecture of a Lifetime — what he has learned in his too-short years, and the legacy he wants to leave his wife and children. As I said then, I felt his remarks were simply brilliant, and brilliantly simple.
[If you haven't heard of this fine man, you should know that in August 2007, he was given up to six months to live. He is dying of pancreatic cancer, a swift killer with very few who survive it more than a few months once it's diagnosed.]
I learned Randy appeared on Oprah today. That means that people who had not heard of Randy, and his “lecture of a lifetime” before today have certainly heard of him now.
I didn’t see Oprah, but I did decide I needed to check back in with this remarkable man. On his personal blog I found a link to the video of his address to the Carnegie-Mellon Class of 2008. (As an aside, I’m proud to say that my closest friend’s son, named Tim, was a top engineering graduate at Carnegie Tech this year — you go, Tim!)
Just like any of the other appearances of Randy’s I’ve witnessed, his graduation speech was moving; moving to the point that you just wish — just WISH — and hope and pray that his death is a loooong time coming from now. He is so generous with his words of wisdom. He needs more time to share them all.
He made two excellent points for the rest of us:
When we are on our deathbeds, it won’t be the things we did that we regret. It will be the things we didn’t do.
To live your best life, find your passion — the thing that fuels you from the inside. You won’t find it in things you buy or own. You’ll find it will be grounded in other people.
Since first discovering Dr. Pausch last year, I’ve felt a bit of a kinship. Unless you’ve ever heard that death sentence (you have only six months to live) you can’t really relate to it. But if you have heard it? You discover there is a very strong tie that binds you to that person — and I feel that tie with Randy Pausch.
Take the six minutes to watch his commencement address. It will stay with you, as I hope it will stay with those many graduates of Carnegie Mellon who were lucky enough to have known Dr. Randy Pausch, even if it was only for those few minutes at commencement.
