Commentary
I Am Not A Number; I Am A Patient
- by Elizabeth Elfenbein , Columnist, July 23, 2013
Until you’ve walked in the shoes of a patient, you really have no idea how it feels.
You can attempt to channel their emotions and imagine their confusion, fear, and pain, but nothing can replicate the weight of reality behind the actual experience. I've been creating consumer and patient communications for more than 15 years with the promise of understanding the patient’s plight but what I’ve learned is that, until you’ve experienced your own health concern, it’s almost impossible to have full empathy for the patient experience.
A few weeks ago I visited my doctor for an annual checkup that included full blood work and bone density measurements. It was a painless experience, even considering the wait for the results of the blood work. I eased back into my daily routine. Then I received the follow-up call from my doctor with the results. Her voice was calm and her tone upbeat as she suggested that I see a specialist to check my thyroid. Apparently, my thyroid levels were high; I appeared to be hyperthyroid. Not exactly good news, but not the end of the world either.
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Searching for a specialist
So I set out on the journey of finding an endocrinologist. I called all three doctors who were recommended to me, but eventually decided on one at Cornell Medical Center, based on my insurance and their availability. Although the center has a good reputation, I realized that, more than the latest technology or most convenient location, the doctor is truly what defines the patient experience. At our first meeting, my doctor was confident but condescending. In fact, he had the worst bedside manner I've ever experienced. His lack of empathy for his patient’s fear of the unknown was evidence that his clinical expertise was completely detached from his human understanding. The cold and clinical environment was almost as scary as being diagnosed with the disease. Not only that, but my visit was rushed, and I left his office feeling like a number.
After that initial visit, the doctor ordered more extensive blood work, and I readily complied. I waited patiently almost as if there was nothing wrong with me, enjoying my newly trim body (a result of my recently diagnosed condition). A few weeks later, I decided to call his office to follow up on the results of my blood work. No one answered. The next time I heard from his office was through the U.S. postal service; rather than return my call, he mailed me a letter containing the results of my lab work and a diagnosis of Graves' disease. Graves' disease is the result of problems in the immune system that lead to increased thyroid activity. When I received the letter containing my diagnosis, I was completely unprepared for the emotional impact of this cold and clinical interaction.
Treating a person, not a condition
I’m not sure if it’s my family background of doctors or my lack of experience in the role of a patient, but I was appalled by the way I was treated. All I could think of were the millions of people who don’t understand the system the way I do, all of the people who don’t have the same financial and social support that I have. I knew that, for myself, my treatment journey was not going to be dictated by one doctor’s poor response. Just as the diagnosis of Graves' disease does not define me as a person, this doctor’s bedside manner would not define me as a patient.
Thank goodness for Google
After being robbed of the respect of a human interaction when learning of this very serious and very personal news, I was empowered immediately to seek information and potential treatment options on my own. The ability that the Web and various search tools have offered is amazing. Fifteen years ago, I would have been stuck in a black hole waiting for doctors to diagnose me; I would have depended solely on them to investigate my treatment options.
Education is at the core of moving forward
Today, I can self-educate via many Web-based educational platforms such as Mayoclinic.com, webmd.com, endocrineweb.com, livestrong.com and many other sites whose main charge is to help inform and guide a patient’s health treatment journey. After diving into research on Graves' disease and thyroid conditions, I gained a new sense of confidence in dealing with the journey ahead. It also gave me a series of questions to ask my doctor during my second visit (in which I was given three minutes for questions).
The Graves' community online presence is, well, grave
Although the Internet provided me with an abundance of information, I was underwhelmed by the online communities for Graves' patients. I also found that while there were some smaller communities, there just wasn’t enough of the right kind of forums for these patients. There seems to be an unmet need that I hope someday to help fill.
So far, my experience has instilled an even stronger sense in me of just how important patient empowerment is in health and wellness. Just remember that you are the patient: you have certain rights as a human being, and this is particularly important when it comes to your healthcare. You have the right to be treated decently and honestly and the right to make educated decisions to ensure that your health outcomes are as positive as possible.
Welcome to the jungle, Elizabeth! I did my share of medical stories when I was in the network news trenches, and advocated for/managed my parents' care through end-of-life. When I got my own cancer diagnosis a couple days before Christmas a few years ago ... well, "weird gift" doesn't really do it justice.
In the time since, I've become an advocate and activist for exactly the type of creative destruction of healthcare you talk about. There's even an official group for us: the Society for Participatory Medicine (participatorymedicine.org).
I'm still a journo, producing content for a major medical society, among other clients. I'm also on the speaking circuit, talking about how patients, businesses, and the communities they live and work in can help drive the change that's needed.
I'll say you need to keep an eye out for the phrase "patient engagement," which has become a trope for corporate medicine to dangle in their marketing, and for the paternalists in healthcare to sport as a temporary tattoo over their desire to maintain business as usual.
Engagement isn't what's needed. *Empowerment* is.
I'll repeat: welcome to the jungle =)
I've run into similar physicians in the past, Elizabeth. Today I'm lucky to have a great relationship with my primary care physician. If I run into someone like your endocrinologist, I report that back to him, whether I continue with the specialist or not. He made the referral, and a patient relationship is important to him. It's not to the specialist.
Perhaps you might try this tactic with your primary care physician. She likely regards you as an important relationship, too. She might know more than one endocrinologist.
"Although the Internet provided me with an abundance of information, I was underwhelmed by the online communities for Graves' patients. I also found that while there were some smaller communities, there just wasn’t enough of the right kind of forums for these patients. There seems to be an unmet need that I hope someday to help fill."
Just an aside to your main points, social media is helping us to catch up on the information and sharing front. Take a look at one site, http://www.patientslikeme.com, where you'll find 5 pages of search results on Graves' Disease. The site has a great backstory, founded by a guy who lost his brother to ALS (Lou Gehrig's Disease) in a struggle they documented on film.
Casey I couldn't agree more with the need for empowerment. But the way I see it is that we need to engage and this engagement drives the empowerment. I guess one could ask which came first the engagement or the empowerment. I do think they are mutually inclusive.
Jim- I went back to my internist for my second opinion and left Cornell to go to endocrinologist from NYU. My new Doctor wasn't just science smart she was incredibly kind and compassionate.
Thank you Grant. I am aware of patientslikeme.com.
I didn't think to go there when I initially searched for information. I see there is some great material worth reading. What I will say is now that I know what my diagnosis is and my treatment plan I almost want to go back to living and not be reminded that I have a condition.
Sadly your experience with a callous specialist and the onerous responsibility of learning about Graves is all too common. I’ve interviewed hundreds of people who spoke the same anthem, a cry for humanism in a system where indifference is tolerated. People, often women, suffer such ill treatment from multiple physicians before ultimately getting a devastating diagnosis. More disturbing, as you experienced, when patients are told of a life changing auto-immune disorder or a cancer they are may be left in the lurch. They must find, as you did, the internal and external resources to cope and to make vital decisions. The journey is often convoluted. Too often physicians I’ve interviewed remarked that they were not able to stand in the patient’s shoes until they were diagnosed with a dreaded disease! Some medical schools have recognized the magnitude of this failure in appropriate treatment. They are investing in teaching patient narratives and empathy training. Let us hope that the next generation of patients encounters care of the whole person. Thank you for speaking out in this forum. You are fortunate to have come to acceptance and personal advocacy so swiftly.
Elizabeth, you're right ... if you're a normal person. However, "engagement" in this vertical has become a buzzword, not a tool. I spend most of my working life embedded in conversations about this, and there's a MASSIVE resistance to real change, like pockets of infection, throughout the system. Engagement has become something that's granted to patients, not something that patients are encouraged to self-select. That's why I use empowerment exclusively at this point.
I'm so sorry you went through that, Elizabeth. I'm glad you found a better doctor. It's really too bad that doctors "treat" (no pun intended) patients so coldly. Hopefully in the future more doctors will understand, or be trained, to provide appropriate, empathic treatment for their patients than you got. Thanks for publicizing the need for doctors to not behave coldly. I've gotten that kind of attitude from doctors and their staffers before and it really does make bad situations worse for patients.
Elizabeth, I'm sorry for your diagnosis. But what a great piece! I can only hope that more marketers who aren't sick (yet) read this and let it all sink in.... oh, and welcome to the club. :)
Sorry about your diagnosis. Here is a link to a great resources on Graves Disease. It was updated in March and has amazing information.
http://www.medifocus.com/2009/landingp2.php?gid=ND004&?a=a
The company, Medifocus, has been selling content like this to folks like yourself (those who want more than what WebMD and other portals offer) since 2000. I think you will find it valuable.
They used to be a consulting client of mine. FYI - I am former WebMD, so I know firsthand how much more robust and helpful content like this can be to folks in your particular situation. Too bad Pharma wont offer this kind of information on their websites...but that is another story!
Best of luck!
Thank you all for your warm responses and comments and more importantly for your insight because of the experiences that you've had that has provided you with a special lens. In October we will be launching a blog to create a platform for patients to share their health stories both bad and good. The hope is to create a different kind of patient community. If any of you would like to share your health story please email me directly at eelfenbein@thebloc.com and let's talk. Thanks again!
For the life of me, I cannot understand why you went back. Your gynecologist will either treat you or recommend people to you. Then you write a letter to the hospital CMO and other department heads. There is a lot of money to be made on you and they don't want to lose it. Unless the doctors are warned from their superiors with less patients and less income, they won't change.
An excellent article. A Doctors oath is first to do no harm. A holitic approach to the patient is required. We are terrified when we are told something is seriously wrong with us. Part of doctoring is to respect this, understand this, and behave accordingly. I have been an activist regarding this, as I have experienced " just being a number"
Thanks for joing this effort, Elizabeth.
I enjoyed reading your piece. It's interesting that we (generally speaking, marketers and healthcare providers) don't really think about the importance of patient experience until we have an experience of our own that leaves us wanting (or we get dinged on a survey). The question is: what can we do about it? In order to stop thinking about patients as numbers, we need to acknowledge them as consumers. Consumers have options, they can choose their doctor. Consumers don't just exist in healthcare, they consume other services. They know what good service feels like. We should learn from those places, not just who in healthcare does it well (hint: no one in healthcare can match the service at the Ritz). Finally, we need to help them help themselves. You brought up a great point about education being core. It's the healthcare provider's responsibility, now more than ever, to curate all of the content available to patients hungry for information. If I bring in a print out from Google, my provider needs to be willing to talk to me about it and if it's wrong, direct me to a better source. Best of luck to you, and I hope your experiences improve.