Posts tagged ‘doctors’
End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.
La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:
Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.
Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.
Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.
Diana Cole told me, “The internet saved my life,” and recounted a story about using the internet to identify a bat bite and learn about rabies in bats, leading to an emergency room trip. She later introduced me to her sister, Carolyn Kingston, who attributed her successful outcome from hip replacement surgery to her use of the internet. I asked Carolyn about her general use of the internet for health, her specific use for her surgery, and the blog she started to record her surgery and recovery.
Lisa: When did you start using the internet for health information and why?
Carolyn: I’ve been using the internet for health information for years, mostly to supplement and clarify information I get from my doctor. For example, as a person who has had chronic colitis for many years, I explored a number of sites searching for alternative treatments that would help cut down or eliminate some of the strong medications used in traditional medicine. I found a book online with a holistic dietary approach, which I followed during flare-ups for a month or two at a time for several years with limited success. Ulcerative colitis is tricky because up till now doctors have no idea what causes it.
Lisa: Do you and Diana discuss your respective internet use?
Carolyn: Diana and I often discuss and share information about use of the internet for health related issues. Her experience with the bat bite is an example. My health-related searches on the internet are usually very targeted, and directed toward answering a specific question rather than broad, generalized browsing.
Lisa: What led up to the hip replacement surgery Diana told me about?
Carolyn: I first noticed discomfort in my right hip about 8 years ago. In the last few years X-rays and an MRI showed increased deterioration of the cartilage in the hip joint and an increasing narrowing of the space between the ball and socket of the hip – typical of degenerative osteoarthritis. The time to have hip surgery is determined by how it feels, not how it looks, so it is largely the patient’s decision. With regular low impact exercising, such as swimming, walking, yoga, and tai chi, and herbal remedies, such as Glucosamine Chondroitin and fish oil, I managed to keep going pretty comfortably until the last few months. Even then it was not as much chronic pain but lack of mobility and the ability to enjoy exercising that was the impetus to schedule the surgery.
Lisa: At what point did you start searching online?
Carolyn: In January 2010, right after making the appointment for surgery on April 7. I’d seen my orthopedic surgeon for the second time in December, looking for a medication stronger than Naproxen and Tylenol. He prescribed Tramadol and we discussed whether to have the surgery now. Basically it was left up to me – a wait and see how it goes situation. In my first appointment with him about a year before he described in detail the advantages of the newer anterior approach to hip replacement, that the entry was more toward the front of the hip resulting in less bleeding, no cutting of muscles, and faster recovery time. In addition titanium is now used for most of the replacements, so it lasts longer, up to 25-30 years.
Lisa: What information were you looking for?
Carolyn: My first internet search was to find out more about “anterior hip replacement” and there was lots of information out there, including medical websites describing all the advantages and testimonial blogs by patients. I found few negative testimonials about this approach to hip surgery. What I did not use the internet for was to look for alternatives to surgery, and there were many ads on sites I visited claiming various ways to avoid hip replacement. I also did not research surgeons online because I was fortunate to have an excellent surgeon whom I liked, as well as the positive testimony of a friend who’d had a very successful result with the same surgeon several months before.
Lisa: Diana told me that you learned things online that led to a good outcome: what were they and could you have learned them in other ways?
Carolyn: What I learned online was very helpful both pre- and post-surgery. I found sites that had lists of pre-op exercises, which I printed out and began doing faithfully 6 weeks before the surgery. I found checklists of how to prepare your home for post-op recovery. I searched Amazon for books and ordered two, plus a meditation tape on preparing for surgery recommended by my therapist. I could have found out these things through my health plan, but this was efficient and didn’t involve making an appointment. To satisfy my need for information I ordered online the 2010 version of John Hopkins paper on Arthritis and set a “Google Alert” on current media articles on hip replacements. Some of this information was useful for the short speech I gave in March to my local Toastmasters Club on “Making Medical Decisions.” Post-surgery I felt ready to watch a step-by-step video of how this particular surgery is performed. I was also interested in how long it would be to recover full muscle strength in the muscles of my right leg.
Lisa: Did you look for specialized information, such as concerns you had as a singer? Were these searches successful?
Carolyn: I googled the length of time post-surgical effects of general anesthesia and the effects of intubation on the singing voice. On that issue I did not find any helpful information.
Lisa: How has your experience influenced your attitude toward using the internet?
Carolyn: My attitude toward using the internet is very positive. I use it to educate myself and to find reassurance, but not for self-intervention. I am very wary of sites that make claims to heal you in X months or days. The internet is an amazing resource which I use daily for one thing or another and I am grateful for its existence.
Lisa: I saw the blog you started, Becoming Hip. Can you tell me why you started it and why you didn’t continue it? Have you read other health related blogs and, if so, did you find them helpful?
Carolyn: I started my blog partly to learn how to set one up but primarily to share my feelings and thoughts day-to-day about my upcoming surgery with friends and family. It was also a way to remember my mother who died last summer and who had a total of three hip replacement surgeries, the first in 1978. In those days the prosthesis didn’t last as long, necessitating a re-do of her first one 17 years later.
Lisa: Why you didn’t continue it?
Carolyn: Somehow I got in the habit of writing my entries longhand (something I am used to doing in my journal) and never switched over to writing on the computer. Post surgery I wrote mostly to record the rehabilitation progress I was making which will be useful in the likely event I have the other hip replaced. Your question, however, has prompted me to transcribe what I wrote over the last 6 months and I am posting them bit-by-bit on my blog.
Lisa: Have you read other health-related blogs, how did you find them, and did you find them helpful?
Carolyn: I did read a number of other blogs and found them of varying usefulness. Some were way too self indulgent, others were very informative and encouraging. Recently I was concerned about muscle tightness in my operated leg so I Googled “muscle tightness post hip replacement” and found a very helpful entry on an Orthopedic website. It re-assured me that muscle tightness often takes several months to resolve.
Lisa: Did you – or do you still – follow any of these blogs regularly?
Carolyn: No, I don’t follow any blogs regularly. I usually just Google a specific question.
Lisa: Did you show your blog or journal to your doctor? Did you talk to your doctor about your internet searches or ask for recommendations of websites?
Carolyn: No, I didn’t.
Lisa: What advice do you have for someone in your situation based on these experiences, both your internet research and your use of a journal and blog?
Carolyn: If you are a person who likes to have a full understanding of what you will be going through, the internet is a great resource. It can’t replace personal conversations with your doctor of others on your support team but can give you more understanding and greater peace of mind.
As an avid reader of his blog and an admirer of his eloquence, I spoke to Dana on June 18, 2010 about why he started the blog, how he writes it, and how it has helped him through his prostate cancer.
Lisa: How did the idea of writing a blog first come up?
Dana: I have been a working journalist since 1980. In October 2008, I was working on my 6th book and having trouble writing because I was obsessing over having cancer. At the same time I couldn’t find what I wanted online about prostate cancer even though there is a lot of information out there. So I thought I could write about this. I wanted to give the topic a distinctive voice and be honest, not just about prostate cancer, but about cancer and about being ill. I was concerned about my family’s reaction, but I spoke to my wife and sons and they were fine about it. A colleague put me in touch with New York Times health blogger Tara Parker-Pope who responded positively to the idea. It happened quickly after that.
Lisa: What has been most interesting for you about the process?
Dana: The two most interesting things about it were the extent to which writing it gave me an opportunity to find out what I thought about different aspects of having cancer, and the reaction to my blog, which stunned me. I but didn’t expect so many men to respond that I was articulating things for them or women to respond that I was saying what they wanted their husbands to say.
Lisa: How many readers do you have?
Dana: I don’t really get a count of readers for each post but some, like My Brief Life as a Women, have had hundreds of thousands of views. And a few posts have over 600 comments. I knew my blog had become well-known when Whoopi Goldberg made fun of me on The View.
Lisa: Do you read all the comments?
Dana: I read most. New York Times Op-Ed columnist Tom Friedman gets hundreds of comments and I suspect he doesn’t read all his comments, but it’s a different type of writing. I am a big fan of the 2-3 sentence comment, but even the long ones I skim. When I read my blog comments, I see that they really like me.
Lisa: Are any comments helpful or supportive?
Dana: It is helpful knowing that I’ve been able to help people, that I made it easier for people to talk about and go through this process. I am happy to read the advice in comments but I’m a strong-minded person and have my own ideas. It cracks my wife and me up when people suggest crazy cancer treatments.
Lisa: Are there gender differences in who reads or comments on your blog?
Dana: More women read my blog than men. Men and women respond differently: women tend to be more insightful and understand the emotion I’m trying to convey in the blog while men are more focused on data: name, rank, serial number. Men are more emotionally stunted in our society and think they have to be tough.
Lisa: Have you shown your blog to your doctors?
Dana: My oncologists have looked at it off and on, also the radiation technicians. They appreciate what I have to say. But I don’t write for them because my obligation is to my readers and fellow cancer patients.
Lisa: Is your blog edited?
Dana: My primary job is as an editor, so my posts go through a few drafts and then Tara Parker-Pope reads them and she may have some edits or changes which I look at. Finally a copy editor reviews it.
Lisa: How does the New York Times promote your blog?
Dana: It appears on the Health page with my picture, sometime highlighted at the top. Some posts have appeared as a most emailed article, which itself increases visibility, just like when a book appears on the bestseller list.
Lisa: Do you read other patient blogs?
Dana: I don’t. I spend time reading every day, but I read the New York Times and I read books. I try not to lose myself on the Internet. I’m 52, a dinosaur from age of print, although my sons are amused that I blog.
Lisa: Can you offer any advise about reading other people’s blogs or starting your own solely based on your own experiences?
Dana: I really don’t because I had the benefit of working here at The Times. But, if someone is obsessed about their situation and wants to write, then they should go ahead. It’s a big ol’ Internet.
Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.
Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?
Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it. It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins. My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.
Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?
Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with. I searched for answers as well, especially because I had so many questions. The problem was realizing there is a fine line between being/getting educated and just knowing too much.
Lisa: What did you find that was ultimately most helpful?
Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.
Lisa: How did you learn about J&J’s test?
Jesica: My father was looking for methods to monitor how and if chemotherapy is working. He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC). He told me to take a look at the article, that it was something he thought I should do. I contacted a rep from the UCCC and inquired how I could take the test. I persuaded my oncologist to order the test and we went from there.
Lisa: Why did you decide to tell your story?
Jesica: People were interested in the information I had. I am a very private person, but also felt that this was something I had to share. I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references. After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me. Through this event, local papers and news media were contacted. My story initially appeared on a newscast and in a couple of newspapers.
Lisa: Would you have told others your story had your situation been more “typical”?
Jesica: Yes, but it wasn’t. I knew that there had to be more people like me out there searching for information and feeling helpless. Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.
Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?
Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.
Lisa: How did you feel about including your students and your family?
Jesica: Fine; I thought it was for a good cause. Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation. I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.
Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?
Lisa: You mentioned that you did other interviews – what made you decide to?
Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment. I knew the information wasn’t prevalent and I wanted to get it out there.
Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?
Jesica: Yes, information is very powerful. I wanted my friends and family to know and understand what I was going through. People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.
Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?
Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.