Monday, October 22, 2012

My Weekend: Tales of the Pale Rider

This is the story of my weekend. At the end of my workday Friday, I found out my Brother-in-Law, H, returned home from work to find his wife, D, collapsed in a heap between her bed and her wheelchair. H did all of the usual things to get the situation under control, eventually ending with an ambulance trip to the nearest hospital. On Saturday my wife and I joined them at the UVA Hospital where they had been transfered. I spent Saturday night / Sunday morning at that hospital while H got a chance to go home. It is nothing new for me to assist in D's care. My wife and I have spent a week doing it while H was on an important business trip. But that is not what this story is about. 

My readers, I present a discussion about the end of a relative's life. We will all eventually die. Regardless of your personal plans, I'm very certain of this. This is the story of my weekend. The end of the story isn't here. That's still to be determined. However, there is an important thought here that applies to your life too. Can you identify how my Sister in Law's life has affected yours?

A little history for those new to the story. My Sister in Law, D, is 72 years old. Her medical history includes 2 Strokes, 4 TIA (minor strokes with no long term effects), Coronary bypass and pacemaker, and Spinal Stenosis that was fixed by metal cage in her neck, but can’t be fixed in her lumbar region due to scoliosis (non-standard spinal curvature). Beca
use of the stenosis, she’s on significant pain killers. She’s been basically bed-ridden for the last 2 years. She uses an electric wheelchair in her house, but has been able to transfer herself from bed to chair and back again. Recently, she’s only had an average of 2 good hours a day. (Hours that she is totally alert and aware; able to act and interact.) 

The family has known that D’s time is limited, but whether her strokes or her spinal stenosis would kill her was unknown. Following the collapse, we've discovered a third disease process in the race that is guaranteed to win.

D was bleeding profusely from her bladder. Ultrasound and CT scans discovered a mass in her bladder approximately softball sized. While no biopsy has been performed, it is presumed to be cancerous, since the odds of it being benign are <5 %. 

Because of D’s various medical conditions, the usual surgery to remove the bladder is not being suggested at all. Instead, doctors are investigating the probability of successful endoscopic surgery to investigate whether the tumor can be cut from the bladder wall and removed. If the surgery is too risky or the tumor cannot be removed from the bladder wall, the two other choices are to allow the bladder to clot closed and either drain the kidneys via external tubes (in the back) or do nothing to drain the kidneys. The later will result in death within 6 weeks by potassium overload of the cardiac system (Yes, the pacemaker would be turned off to allow this to happen naturally.) 

We know D’s wishes. Her husband, H, has both Legal and Medical Power of Attorney and D long ago filed Do Not Resuscitate orders. The adult children understand this and have prepared the grandchildren as best the children are able to understand.

That is the story to date. Tomorrow there will be a conversation between the various involved doctors and the family. The wishes of the family are for D to be as comfortable as possible in the time she has left.

Did you discover the moral of the story? Yes, Readers, your end is just down the road too. None of us know the end of our days. 10 minutes after I've posted this, a meteorite from the Orionid Meteor Showers could have crashed thru my roof and killed me. Worse, it could have left me alive but unable to communicate my wishes. So, DO IT NOW!!! Wait, did you hear me??? DO IT NOW! Make sure your loved ones know your thoughts about the end of life. 

How hard do you want them (us?) to fight? Are you ready for the journey to end? What still needs to be done? Why are you waiting? The Rider of the Pale Horse is on the road. Is he on the way to your house?

Wednesday, October 17, 2012

Letter to the Editor - Journal of Hospital Librarians​hip

Dear Editor,
I've just finished reading Christine Marton's series of articles on the Online Presence of Medical Library Web Pages (1-3). I am a Librarian at a nationally recognized medical library, however regulations don't allow me to identify which one. Since clever readers will be able to identify me eventually, I must state here that this is my opinion and does not reflect the views of my employer. My place of employment is not one of the Libraries discussed in any of these articles, so this isn't just 'sour grapes'. In fact, my Library isn't even attached to a Hospital.
According to Ms. Marton's bio page at the University of Toronto ( ) primary interest is "the online health information behaviour of specific population demographics, primarily women and cancer patients."
Reading these complaints against the top 10 facilities in the United States, it is obvious that her interest is not Medical Libraries in the US. I contend her initial hypothesis is entirely wrong. The whole study was designed around finding links to the Medical Libraries at these locations for public health information. Why does she suppose that Hospital based Medical Libraries are bastions of Public Health Information? The United States has a variety of Medical Libraries and even those attached to major Hospitals may not undertake Dissemination of Public Health Information as one of their missions.
The National Library of Medicine ( ) provides a link to for Public Health Information. PhPartners identifies itself as "A collaboration of U.S. government agencies, public health organizations and health sciences libraries."  The FAQs do not list any Hospital Libraries as partners. They also list their goals as:
  • Organize and deliver public health resources so they are easier to find and use.
  • Identify and develop collaborative projects to meet the information needs of the public health workforce.
  • Increase the visibility of the partnership with librarians and the public health workforce.
  • Increase the information literacy of the public health workforce.
  • Strengthen the collaboration among the Partners.
I don't see Hospitals listed in the goals nor Libraries. I see "Increase the visibility of the partnership with librarians" which I paraphrase as 'let Librarians know we exist'. I don't see that anyone is pushing the theory that Hospital Libraries are supposed to be a source of Public Health Information except Ms. Marton. I see a lot of support for Government sites providing Public Health information. In Ms. Marton's article, she repeatly mentions the number of sites linking to the best known and best reviewed government source -- MEDLINEplus.
I believe the top 10 Hospitals in America are those that provide the best service to their patients. They are almost all heavily involved in the training of upcoming medical professionals. Their Libraries, accordingly, are directed at the Medical Professionals especially Medical School Students. Ms. Marton's articles point out very well how well linked some of these Libraries are to the departments they support. She doesn't seem to notice that the separate websites of those Libraries often tell you their primary goals or function. For example, Ms. Marton identifies Johns Hopkins' Welch Medical Library web site - For some reason I don't understand, she doesn't mention the giant banner on that page that reads: "Welch Medical Library  Serving the faculty, students & staff of the Johns Hopkins Medical Institutions".  That's a pretty obvious mission statement and it doesn't include the words Patients or Public.
The Mayo Clinic Library site's About page ( ) does mention patients. "Mayo Clinic Libraries is dedicated to meeting the information needs of Mayo Clinic employees, students, and patients." However further down the page they tell us that their system is really split into multiple libraries; a system for researchers & students and a separate set of patient & consumer resources. "Although Mayo Clinic maintains a private library system, visiting students and health care professionals are most welcome to use the traditional and electronic collections on-site. Specialized libraries serving hospitalized patients and their families, consumer health libraries, and special collections and archives related to the history of medicine and the history of Mayo Clinic are also available."
Third ranked Mass General's Library site - - is the first one that specifically states its goal is to support patients. While Ms. Marton decries the Library's placement on the third level of links, she doesn't seem to mind that all of the departments, Oncology, Gynecology, Neurology, etc, are also on the third level. The third navigation level is the first one to offer any webpage links. The first two levels show organization of the web pages into discreet sections. In talking about this third ranked major hospital, Ms. Marton missed the mark by the widest margin. Mass General doesn't have a Medical Library in the sense of a Library that caters to Medical Professionals. That Library is the Boston Medical Library - They jointly support the Medical Schools of Harvard, Boston U, Tufts, & U Mass. Mass General Hospital has three libraries to serve patient's needs; two are for entertainment and one for public health information. Doctors would contact BML for their information needs.
In summary, Ms. Marton is applying a public health principal that simply doesn't exist in this instance. The Medical Libraries associated with these top three hospitals, and I'll warrant the top ten too, don't exist for public health information. Since that isn't their goals, the Medical Library isn't a major portal on their institution website. Of course  Ms. Marton's searches for Hospital Medical Library on the Public web site of these Hospitals didn't find the Public Health Information she wanted. She was looking in the wrong place. The Medical Libraries that don't provide patient support are on the Intranet, not Internet.
By the same token, you're not going to find links to the Staff Library at my institution on our Public Website. It isn't for the public. From the Intranet, I can find all of the resources.
Ms. Marton, you are looking in the wrong place for the information you seek. To decry the Hospital Libraries for not meeting your goals when you aren't a patron of any of those Libraries is the worst form of prejudice. You are judging these Libraries by your standards, not by their goals. When they are meeting their goals, which don't include you, you say they aren't doing their job. I'm sorry, but those Libraries need to be judged on their stated goals and not yours.
J. Shore
Systems Librarian
@7shores on Twitter
  1. Christine Marton (2012): Invisible: The Online Presence of Medical Library Web Pages on Hospital Web Sites, Journal of Hospital Librarianship, 12:1, 14-24. 
  2. Christine Marton (2012): The Online Presence of Hospital Medical Librarians on Hospital Web Sites, Journal of Hospital Librarianship, 12:2, 171-180. 
  3. Christine Marton (2012): The Online Presence of Information Services at the Rehabilitation Institute of Chicago, Journal of Hospital Librarianship, 12:4, 342-350.

Thursday, October 11, 2012