February 22nd, 2007 by Trisha Torrey
As announced here several weeks ago, my Every Patient’s Advocate columns can now be found in the Knoxville News Sentinel — and today is the debut. This is my official date of syndication! I now have two regular publications carrying my column — and hope to add many more.
Find “Take Your Pills Seriously” in the February issue of WELL Magazine.
February 21st, 2007 by Trisha Torrey
Yesterday, I responded to a post at “punctuative!” — called - Patient Advocates aka Healthcare Rangers by Matt Winn. Matt, who is a venture capitalist, was commenting on patient advocacy as a relatively new service provided to patients. My response was simply a thank you — because he cited some of my work.
Today there is a response from Loren. Loren doesn’t provide any credentials, but Loren seems to think patient advocates shouldn’t exist. He says that instead, the healthcare system should be fixed. Also, it brings up too many legal questions. Further, since not everyone can “afford” an advocate, it hardly seems fair that anyone should have one. You can read his entire response here.
As those of you who read any of my work know, I just can’t sit still for that kind of — ahem — reasoning. (Yes, I’m holding my tongue and being polite!) It’s simply b*llpooky!
Here is my response…. see if I covered it pretty well?
………………..
Loren,
All your well-thought-out reasons AGAINST a patient advocate system are, in fact, the very reasons a patient advocate system is so necessary.
Here’s a metaphor — see if you can picture yourself in this position: you are visiting another country where the language and customs are completely foreign to you. You are sick, and scared, and find yourself alone, in a hospital or other location where, supposedly, someone is going to help you. People are talking AT you, but you don’t understand a word they are saying — except, on occasion, they nod their heads, smile, pat your head, and you feel a bit safer, because they seem to know what they are doing. The next thing they do is hand you a pen, and a piece of paper and clearly they are expecting your signature. (This is what patients experience every day.)
You ask if anyone speaks english. You ask for a translator. Nothing. So you cross your fingers, sign the paper, and hope for the best. Then they take you to an office where they are holding out their hands, and you realize they expect you to pay them. You find out that nothing will be done until you give them the money they charge — in whatever their currency is — and you don’t have any way at all to explain about health insurance because you have no idea whether you are covered for whatever it is they’ve decided to do in whatever country you are visiting.
What you don’t know — because you are now so horribly confused — is that you have cancer, and if you don’t have immediate surgery and follow up chemo, you will be dead in weeks.
How could that situation be improved for you? A translator would help. The ability to ask questions of the providers would help. Access to resources for learning more about what is wrong with you could help. Clearer access to health insurance information would help. Someone to help you slog through the information you needed to make your own choices would help.
Those are the things patient advocates do every day.
By YOUR scenario — you, the patient, would have had to wait for the world to decide it was time for everyone to speak english (so you could understand what the doctors were telling you), or wait for the politicians to straighten out the government mess, or for the legal eagles to figure out how to fix the laws, or the insurance providers to get their acts together. Or, you’d have to wait for everyone to have equal access to advocates because — God forbid — no one should find help because everyone can’t find help.
By that time, your cancer would kill you. You would be looooong gone. Shoot — at that point, your CHILDREN will be long gone!
I totally agree that the American health care system is a completely dysfunctional system that needs to be fixed. No question. But while all that dysfunction is being sorted out, discussed, debated — people are dying, many of them needlessly.
Even then — even IF/WHEN all that gets cleaned up and straightened out, you’re assuming that doctors will buy-in to the notion of patient involvement/ input/feedback. So far? Most don’t. You should SEE the email I get, and the stories I hear.
One last point to make. Had I waited for the fantasy-land you described, I would be dead. Because it was patient advocacy — one single patient advocating for herself — that kept me from undergoing chemo for a cancer I was diagnosed with — and didn’t really have.
Gee, I’m glad I didn’t wait for the dysfunction to sort itself out. And the hundreds of patients I have helped since then seem pretty grateful I’m here to advocate for them today.
Trisha
February 21st, 2007 by Trisha Torrey
The universe has been telling me all week to write more about refusing medical treatment.
Several readers of my newspaper column sent me questions about it — without even knowing I had already addressed the subject on my blog.
And, several readers of this blog sent me personal comments about refusing treatment, sharing their stories or those of their loved ones. As sad as some of those stories are, they are empowering, too, because they show that the patient and family were in control of the necessary medical decision-making.
Further, advanced directives — those documents that help you determine and specify what your own choices are about life-prolonging treatment, including ventilators, feeding tubes, hydration — were the subject of one of my radio show interviews.
But then, the gravity of such a decision — the decision to refuse any treatment that will prolong life — really struck a much closer and ominous chord when I received a letter from dear friends, Annette and Paul. We have been friends for 30+ years, and even when we moved hundreds of miles apart, we used to visit each other as often as possible. From the before-kids days, to the kids-growing-up days, and now to the kids-are-all-grown-up days — it’s a longtime and valued friendship.
It seems Paul was diagnosed less than two weeks ago with pancreatic cancer — and it has metasticized and progressed so far that he has only a few weeks to live. Together Annette and Paul have decided that Paul will refuse any cancer-specific treatment and he will spend as much quality time as he can with his family, and be kept as comfortable as possible with pain relieving drugs.
Paul is still young — not even 60 yet. His daughters are young adults, but grandchildren aren’t yet in the picture. He hasn’t even had the opportunity to enjoy the fruits of his labor in his retirement. It just seems so unfair.
I still can’t write this without choking up. It has affected me on so many levels. I am sad, and angry that such a wonderful and vital man is so ill, and that his family and friends will watch as he is snatched out from under us! It just breaks my heart.
And yet — I absolutely applaud his and Annette’s ability and wherewithall to make such a difficult decision. How marvelous that Paul gets to get through this on his own terms! I will always admire their strength in making the choices they did.
So what’s the take-away for all of us? That making treatment decisions is OUR choice and no one else’s. And, even more importantly, that it’s important to share your feelings about these kinds of choices with your loved ones. There may be a day you can’t articulate your thoughts — either you’ll be too sick, or injured, or you’ll have a stroke, or heart-attack, or be in an accident — something may get in the way of your communication.
Spend some time having this conversation with your loved ones so they know how you feel about your end of life care. Fill out those advanced directives (healthcare proxies, DNRs) so they’ll know how you feel. You’ll feel empowered knowing you’ve made firm plans — right until the end.
February 20th, 2007 by Trisha Torrey
A question popped up this morning in reaction to my column in today’s Post Standard. The column is short — you can read it here: Five Words Can Make All the Difference
The question regards Medical Consumerism — a label that marries the concepts of medical care and the idea of patient as consumer. Turns out there are a handful of definitions for Medical Consumerism, and those definitions seem dependent on the point of view of the person defining it, such as:
Physicians and other providers seem to take the low road (in my not-so-humble opinion), as in a paper published by Yale Medical School that discusses blame and fraud as the underpinnings for such a movement as Medical Consumerism.
And then there are discussions of “valued consumers,” trust and vulnerability having to do with profit making or not-for-profit healthcare, as found in this article from Health Services Research.
In terms of Complementary and Alternative Medicine (CAM) I find references to MC as part of a movement toward patients choosing doctors who will discuss remedies from both mainstream and alternatives. This seems the most balanced one to me.
But, as of today, February 20, 2007, I’m sticking my stake in the ground with my own definition:
Medical Consumerism is the concept of patients taking responsibility for their own medical care decisions, using background information acquired by combining self-assessment, physician and/or provider input, background research, interviews with other influencers, and cost of care.
Why is it important to define medical consumerism? Because right now there is a stand-off in this country, at least by my observation. That stand off is the very negative provider-oriented view of “how dare they tell me how to do my job?” with the very positive “I’m the patient, and it’s my responsibility to understand what’s wrong with me and work with the professionals to make the best choices for myself.”
Any providers out there? Can you buy in? Can we begin to take the negativity out, and begin to look at the positives that can result?
