December 29th, 2008 by Trisha Torrey
If you’ve read this blog for awhile, then you know 2008 was the year of SPTCL misdiagnoses.
SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate. I was told I had it. In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.
But I didn’t. And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.
Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL. Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager). They had found my work on the web and asked if I could help them get the information they needed.
So I did. And we learned that both Heather and Daniel had been misdiagnosed, just like I had.
Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well. And yes, they most certainly are!!
I still choke up. It’s still a bit overwhelming. That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.
Which is precisely why I do this work.
Here’s to even more great discoveries and saved lives in 2009.
December 27th, 2008 by Trisha Torrey
Over the past several months I’ve had the pleasure of getting to know Dr. Gregory Eastwood. He may claim he is retired, but that would hardly be true. He is the former president of SUNY Upstate Medical University and former interim president of Case Western Reserve University. Today he teaches bioethics and humanities to medical students. They will realize someday how lucky they were to have been guided by this gentle and learned man.
The opportunity to work with Dr. Eastwood comes about as part of the weekly radio show I host. We’ve begun a series of ethics conversations, airing monthly, tackling tough questions faced by patients and their families every day. Questions such as: How do we make end-of-life decisions for loved ones with diminished capacity (like Alzheimer’s disease)? Should we have the right, as autonomous human beings, to decide when we are ready to die? Should a woman who is pregnant with multiples be able to selectively reduce the number of fetuses when she knows they are all at risk because there are so many of them? Should doctors tell their patients how long they have to live?
See? Not easy to answer, not any of them….
As we worked on the next ethics show, the conversation turned to how physicians view their professions. The possibility that they start out in med school with very idealistic views of what that career will look like (saving lives and improving quality of life) to the realities of conducting business — dealing with insurance and time constraints and all those shackles their work ends up imposing.
The conversation turned to the Hippocratic Oath. That’s the oath we patients believe all our doctors took as they became MDs or DOs or whatever their title is… and most of us believe it includes the statement “First, do no harm.”
They don’t. And it doesn’t.
In fact, it turns out that different medical schools use different oaths. Not only that, many of them edit the oath their students take to fit… what? I’m not even sure. But the point is, especially when it comes to medical errors and the question about whether doctors should apologize for mistakes they have made, we patients cynically ask why they have violated that Hippocratic Oath — and it turns out they may not have even taken it.
Does that give physicians a free pass to make mistakes? Of course not! I just find it interesting that there’s one more assumption on the part of patients about the medical profession that isn’t true.
Upon further discussion with Dr. Eastwood we also learned that there is another oath which many students take, called the Oath of Maimonides. According to Dr. Eastwood, Maimonides was a physician, judge, and Jewish rabbi who lived in Muslim Egypt 1135-1204. He had a huge following and was very influential.
But — you’ve got to love this, too. The Oath of Maimonides wasn’t even written by Maimonides. It was likely written by a German physician, Marcus Herz (1747-1803).
This oath is lovely, lyrical, almost prayer-like and honestly quite moving. I bring it to you because I think you could print it, take it to your physician, and perhaps begin a conversation with him or her. A reminder of whatever oath your doctor took may cause him to pause for a moment and reorient himself to his reasons for choosing such a noble profession.
(Thanks to Dr. Eastwood for providing the following):
OATH OF MAIMONIDES
Thy eternal providence has appointed me to watch over the life and health of my fellow human beings.
May the love for my art actuate me at all times; may neither avarice nor miserliness, nor thirst for glory, or for great reputation engage my mind; for the enemies of truth and philanthropy could easily deceive me and make me forgetful of my lofty aim of doing good to my patients.
May I never see in the patient anything but a fellow creature of pain.
Grant me the strength, time, and opportunity, always to correct what I have acquired, always to extend its domain; for knowledge is immense and the spirit of man can extend infinitely to enrich itself daily with new requirements.
Today we can discover our errors of yesterday and tomorrow we may obtain a new light on what we think ourselves sure of today.
I have been appointed to watch over the life and death of my fellow human beings. Here am I ready for my vocation and now I turn unto my calling.
December 18th, 2008 by Trisha Torrey
I was excited to hear that the new secretary of Health and Human Services, Tom Daschle, was reaching out to the American people for input on what a reformed healthcare system would look like. Imagine — asking the people who must participate. What a unique and exciting concept!
That was… until I actually went to Change.gov and read about how these “Healthcare Community Discussions” were deemed to take place.
And now? I’m not sure that’s his intent at all.
Read what I have to say about it all.
December 17th, 2008 by Trisha Torrey
As healthcare reform becomes more and more the topic du-year (and next year, and the year after that — a long time, I’m sure) — this one aspect will become more and more of a challenge: finding a primary care doctor and/or getting an appointment to see one.
In my last post, I cited a great article in last week’s CNN Empowered Patient about how to make a primary care appointment happen, even if you can’t get in to see your doctor right away. But this post addresses the bigger issue of the lack of primary care doctors.
An article in the LA Times spells it out very clearly. There just aren’t enough primary care doctors around, and they aren’t being paid enough to keep practices open OR to entice enough medical students to choose primary care for their careers.
If that doesn’t make sense to you, consider this: if you came out of medical school with, oh, say, $200,000 in education loans / debt that needed to be paid back, and you had your choice between:
- A. a job as a primary care physician who was pretty much on call 24/7/365 — or at least close to that — and you made maybe $175,000 a year
- B. a job as a specialist who had specific hours (maybe not exactly 9 to 5, but close), and you made maybe $300,000 to a million dollars per year
Which would you choose?
Primary care must be addressed on the front lines of any reform problems. Massachusetts has showcased this problem quite well.
What are the alternatives?
- some states are considering forgiving much of the debt of primary care medical students if they study in that state, then practice in that state
- encourage more nurses to become nurse practitioners – an excellent way to deliver primary care
- improve reimbursements to primary care doctors (which will drive up consumer costs, too)
- others? do you have suggestions?
December 9th, 2008 by Trisha Torrey
Seven out of ten of the people who read this post will nod their heads in understanding.
You’re sick, or you hurt. You need to see your primary care doctor as soon as possible. You call to make an appointment, in hopes you’ll be seen within the next few hours — but NO. Not gonna happen. You can’t get an appointment for another few days.
First — an explanation. Yes, it’s definitely more difficult to get an appointment for primary care these days. The last statistic I heard was that there are 14,000 too few primary care practitioners in the United States, and that number is growing:
- Baby boomers, as they age, need to visit their primaries more often, leaving fewer appointment slots for others.
- Practitioners who are of baby boomer age are retiring, leaving empty primary care practices behind.
- Primary care doctors make less many than any other specialty – therefore, fewer medical students are choosing primary care as their specialty.
So what are we supposed to do about it?
CNN’s Empowered Patient columnist, Elizabeth Cohen, brings us some great ideas for getting around this primary care dilemma. In particular, check out her #5 suggestion of “go a little crazy” — have you ever tried those kinds of tactics?