Tuesday, October 3, 2006


Backed Up Post #1: Caregiver Blogging & Medical Ethics

    Less than a month ago, Mona, author of The Tangled Neuron, received a comment soliciting her opinion as to whether the commenter should seek a neurologist in regard to medical care for her mother. I know about this because, in her reply, Mona referred the commenter to my journals in regard to medical record keeping and advocation and copied me on the reply. She was careful to refer the commenter back to her mother's PCP for the definitive answer on whether her mother should be taken to see a neurologist. When acknowledging Mona's referral to me, I responded off the top of my head to Mona as follows:
    Funny, but a couple of months ago [in May, to be exact] I got an e from someone in similar circumstances to everyone in the Memory Lane Webring (which hadn't yet started) asking for specific medical advice about what medications would be good, or not, for her mother. I was taken aback. Although I responded, I was very careful to stress that I didn't know her mother's "case" and it would be not only impertinent but irresponsible of me to offer advice...thus, I directed her back to her mom's doctor, after looking up some of her mom's conditions and referring her, as well, to sites that might be much more helpful. It's very strange that such requests are beginning to circulate among "patient consumers"...but I have a feeling that you and I are experiencing what will prove to be the minute tip of a huge iceberg. It's probably a good idea for anyone who writes a blog or journal that speaks to any kind of medical management from the patient/advocate side to establish, for themselves, certain ethical criteria in handling such communications and requests.
    I also mentioned that I thought I'd write a post about this. Mona responded by agreeing that it is, indeed, "weird" to be asked for medical advice when one is not a medical professional and sent me the following link which she thought would be helpful in such a post: HONcode: Principles - Quality and trustworthy health information. The site lists eight "Codes of Conduct for medical and health websites", elaborating on them in links below and to the right of each code. It's sobering reading for anyone who writes about medical care.
    As I read through the Codes of Conduct, I evaluated for myself how well I have stuck to them. I also thought about how closely an informal caregiving website can and should hold itself to some of the Codes. I've decided to list each of these codes, verbatim (without their elaboration, into which you can click on the original site, if you're interested), and a bit about my upholding of and thoughts on them:
  1. "Any medical or health advice provided and hosted on this site will only be given by medically trained and qualified professionals unless a clear statement is made that a piece of advice offered is from a non-medically qualified individual or organisation."
        I'm not sure that it can be said that I give "medical or health advice". I certainly cover my medical and health practices on behalf of my mother in great detail, including links to medications and practices and my observed results of such. As well, I'm sure I'm always careful to mention when a practice, medication or medical regimen has been discovered, adopted and/or altered on my own without prior professional medical advice.
        I'm not completely in compliance with this, though. Once I've linked to additional information about a medication or practice, it's not uncommon for me, in further mentions of it, not to link further. Knowing how voluminous my site is and how unlikely it is that anyone is going to use the intra-search engine to seek out further on-site information about anything in particular, this is probably irresponsible of me. Whether I address this irresponsibility is another matter. It's time consuming for me to track back for my readers and I often feel I don't have the time to do this. Bottom line, I don't believe the informal nature of my journal requires this scrupulocity of me.
        Further, I think it is clear to my site visitors that I am not a medically trained professional, which is why I don't specifically recommend medications and practices I've tried, although I do recommend certain advocation procedures for those who feel the need to advocate medically on behalf of themselves and others.
  2. "The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician."
        Well, certainly, I hold to this in at least a few ways, not the least of which is that I publish all my communications with my mother's doctors, usually verbatim, all of which show how meticulous I am about including her physicians in my decisions and practices. As well, I often publish physician responses, usually and merely as hearsay, for a reason: Most of their responses are in verbal conversation.
        I cannot, though, find any evidence that I have ever said in this journal, "If you're considering using/doing this, consult with your physician first." Should I do this? I'm not sure. I don't always consult with my mother's physician(s) before trying something or after observing something. My purpose in writing about my involvement with medicine on my mother's behalf is to provide a detailed example of how at least one caregiver deals with medicine "informally", so to speak, and record the consequences. I know I am not the only caregiver who does this and I believe using myself as an example will give other caregivers the affirmation they need to know that they are not "the only ones".
  3. "Confidentiality of data relating to individual patients and visitors to a medical/health Web site, including their identity, is respected by this Web site. The Web site owners undertake to honour or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located."
        I certainly adhere to this in regard to data about visitors. However, I certainly don't adhere to this in regard to my mother's medical data. I believe that it is essential that the specifics of my mother's medical data be published, here, so that anyone who is curious about how I come to my conclusions in regard to medical management is not left in the dark as to what criteria I use when I make medical decisions on my mother's behalf. In case you're curious, I have my mother's permission to do this.
  4. "Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page)."
        See my evaluation of "1." As far as dates of modification are concerned, I can't help but date the material: If it's test results, they are dated according to when they were done; if it's information, it's dated according to when the post was written and, sometimes, within the post, according to when I encountered the information. It is not uncommon for me, as well, to indicate within a post when I've significantly modified that post. This applies to posts of both a medical and non-medical nature. I do not, however, change dates and times when I've corrected spelling or grammar on a post. As well, all the stat posts at The Dailies are artificially dated. Somewhere on that site I recorded my decision to do this; as my mother's daily stat information should be dated as per when it was taken and according to the day for which it applies.
  5. "Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in Principle 4."
        Since this is not a medical journal and my "claims relating to...benefits/performance" of anything medical are clearly individual and informal, I do not work hard to fulfill this ethic. However, I notice, in scanning through my journal, that I often mention, not infrequently with links, other sources of results, as well as speculating about how any particular medicine or treatment might be further modified as my mother's medical profile changes.
  6. "The designers of this Web site will seek to provide information in the clearest possible manner and provide contact addresses for visitors that seek further information or support. The Webmaster will display his/her E-mail address clearly throughout the Web site."
        I am meticulous about this, to the point of mentioning when something about which I'm writing has simply been overheard and I can't remember the source. I consider the practice of unidentifiable hearsay legitimate for this journal because, well, this journal is informal and not meant to be nor advertised as a professional medical journal (although, in a sense, I suppose, since I'm listed on Medical Blog Network, it is "advertised" as an informal medical journal; I was careful, in my description, though, not to describe my journals as a medical journals).
  7. "Support for this Web site will be clearly identified, including the identities of commercial and non-commercial organisations that have contributed funding, services or material for the site."
        I'm in compliance with this. I can't help it. This journal is "supported" by no one but me. When I cite information sources I link to them, if I can. In most cases, I can.
  8. "If advertising is a source of funding it will be clearly stated. A brief description of the advertising policy adopted by the Web site owners will be displayed on the site. Advertising and other promotional material will be presented to viewers in a manner and context that facilitates differentiation between it and the original material created by the institution operating the site."
        I suppose, in a sense, I do advertise: The carnivals within which I've participated; the journals I read and to which I refer and sometimes recommend; the listing services I've sought on which this journal appears. There aren't very many of any of these. My outgoing links in my links section are few. The reason for this is specific to this ethic: I don't want to appear to support something for which my approval may, at some time, be withdrawn. This is the primary reason I go to great lengths to read the journals to which I link. It is also the reason why, when I attached and then changed site statistic facilities, I mentioned each and explained that each is designed to deposit a cookie on a visitor's website. It is also why I changed site stat facilities: My previous one decided to attach advertising pop-ups to its service in order to fund itself. The one I use now doesn't do this.
    So. Where do I stand on discussing medical matters on informal caregiver/etc. websites? Well, obviously, I do it and have, occasionally, gotten credible medical suggestions from other informal sites. As well, I recognize that informal healing/medical advice is probably the foremost way that we humans go about diagnosing and healing ourselves. We tend, I think, to solicit professionals when we recognize that our efforts don't or can't work or we're beset with a condition for which we have no personal referent. Without informal medical discussion, for instance, it's likely that I would not have discovered and tried Niferex-150 on my mother in an attempt to control her Anemia Due to Chronic Disease. My mother's doctors never recommended it, nor did they know about it previous to encountering my mention of it. In fact, I decided to, and started, using it on her before contacting her physician about it, although I did this after doing lots of research on it and informed her physician immediately after I began administering it. My initial knowledge of this medication came from our yardman in Mesa, who is my mother's age and has anemia and CRF experiences very similar to my mother's. There are, I'm sure, if I gave the matter critical thought, tons of other medical treatments I've used and continue to use with my mother that have come from discussion with lay people and/or independent research. As far as recommending prescriptions and treatments to her doctor previous to him considering them, I've only twice done this, once successfully, once unsuccessfully. I have manipulated her prescriptions on my own, though, always informing her doctor when I do so. As well, my observations and concerns have been responsible for taking her off three medications and changing the medical directions for a few others.
    This is the thing about informal healing/medical information: It is an activity in which we humans indulge that pre-dates our humanity. Animals pass along healing information through instinct and by example: Off hand, I can think of hearing about chimpanzees, gorillas and baboons doing this. It is one of the fastest and most effective ways of figuring out how to heal many maladies. Perhaps I overreacted when I speculated to Mona that such requests made of informal websites that seem to have something to do with healing are "strange". Not strange at all, really, when you think about it, especially since a fair burden of our community activity is being handled through online communication, these days. No doubt, online communication will become even more important to us as our sense of community continues expansion which includes those who don't live in our vicinity. Thus, I think it is perfectly appropriate for online journalists to talk about what they've tried, how it has worked and even, occasionally, to recommend to others, with caution, the use of this or that.
    I continue to think, though, that it is wise, when someone asks me for specific healing/medical advice, to trace for the inquirer how I would go about solving their dilemma if it were mine, perhaps even provide them with initial sources, then refer them back to a physician. I certainly am not interested in hanging out a shingle and I don't want to be a pioneer whose "practice" gains the distinction of initiating the necessity for malpractice insurance on informal caregiver journals!

Originally posted by Mona Johnson: Wed Oct 04, 05:12:00 AM 2006

Hi Gail,

Good discussion. I plan to make a couple of changes to my blog to bring it more in line with the HONcode principles.

A friend sent me a link to a site yesterday that does not adhere to some of these principles. The site has a definition of Alzheimer's and a memory test. It doesn't exactly give medical advice, but urges early diagnosis and treatment, and lists what tests you should ask your doctor for. The pdf brochure (also available by mail) tells you that if your doctor says your memory is normal, it's OK to get a second opinion.

The site appears to violate the following HONcode principles:

Attribution - information on the site is not attributed to source data, and no links are provided

Justifiability - there's no evidence given, appropriate and balanced or not

Transparency of authorship - the only indication of authorship is a note in teeny tiny letters on page 19 of the pdf brochure: "This brochure has been developed by one of Canada's research-based pharmaceutical companies."

Transparency of sponsorship - same as transparency of authorship.

The friend who sent me the link was under the impression that if one of her relatives who has been having memory problems started taking medication now, his dementia would be improved. Maybe, maybe not, but it is hard for her to consider the source of the information and any possible bias or commercial motive because that information is hidden.

Thanks for writing about this Gail.

Originally posted by Anonymous: Fri Oct 06, 01:19:00 PM 2006

I think that it is important to be clear that we're not doctors, but also, as you suggest, to acknowledge that in many ways, we each have much knowledge about the medical care of people with Alzheimer's AND that if you don't go in knowing what you want out of a health professional, you may not get what you need.
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