Advocacy Resources – Help is Available

Most of us enter the world of hospital-based advocacy as a “beginner.” We lack either:

  • the technical knowledge because we are not trained in medicine; or
  • the personal knowledge because we have never been an advocate and/or patient before.


    For hospital personnel, we may be operating on the “other side” for the first time in our lives and lack the authority and perhaps the detachment to effectively “make medical things happen.” There are many books authored by doctors describing this very challenge when they found themselves horizontal and dressed in the lovely backside revealing hospital gown…

    Because we rarely have the time to prepare ourselves, we need to designate a shelf/section or add to our home reference library materials. Among many good books I have collected over the years, I recommend that a good home-based medical reference library minimally include:


    • a medical dictionary (containing terms and their definitions);
    • The Pill Book (a home/lay person version of the Physician’s Desk Reference);
    • The Merck Manual of Medical Information (information on medical conditions);
    • basic and advanced first aid manuals;
    • Alternative Medicine: The Definitive Guide (information on treatments that are not considered “conventional” and typically are not reimbursed by insurance companies without LOTS of agonizing effort!); and, of course,
    • Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your Loved Ones.
      If you do not have time to read all these materials cover to cover, at least scan the table of contents so you are familiar with what is contained in each.

    While some of these books may not have a long lifespan due to the continuous nature of change and advancement in medicine (for example, The Pill Book is republished annually), they are a good place to start.

    The Internet is much easier to keep current and on it resides cutting-edge information. The caveat here, however, is caution. I am not a medical expert and would certainly not be comfortable endorsing any medically based sites. However, I have discovered sites that can provide excellent resource material for anyone stepping into the role of advocate. With acknowledgement that some of the following material is copied directly from each site, here are resources I have used and found extremely helpful. Many are critical to the research you will conduct online. When available, both phone and Internet access information are provided.

    Be advised, all links functioned at the time article was written. The underlined sections represent my commentary. Apologies to all the worthy organizations not cited below…



    Aging With Dignity

    The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other Living Will and health agent forms because it looks to all of a person’s needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician.


    Five Wishes lets your family and doctors know –

  • which person you want to make health care decisions for you when you can’t make them
  • the kind of medical treatment you want or don’t want
  • how comfortable you want to be
  • how you want people to treat you
  • what you want your loved ones to know


    (888) 5WISHES (594-7437)
    www.agingwithdignity.org/order.html

    Caregiver.com
    This website offers a multitude of materials for caregivers as well as the opportunity to subscribe to a free online e-newsletter. The site also includes featured articles from Caregiver Magazine.


    Caregiver.com hosts both caregiver conferences as well as an online chat board.


    (800) 829-2734
    http://www.caregiver.com

    caringbridge.com
    CaringBridge® is a nonprofit 501(c)(3) organization offering free personalized websites to those wishing to stay in touch with family and friends during significant life events. Their mission is to bring together a global community of care powered by the love of family and friends in an easy, accessible and private way. CaringBridge authors quickly and easily create personalized websites that display journal entries and photographs. Well-wishers visit the site to read updates and leave messages in the Guestbook.


    (651) 452-7940
    http://www.caringbridge.org

    Discovery Health TV (ignore the ad…)
    Diseases and Conditions Encyclopedia – information provided under the following categories.

  • Nutrition Index – discover how to eat well, keep illness and disease at bay and enjoy life – and longevity
  • Medical Tests – learn about a broad range of tests, how to prepare for your test, what to expect during the procedure and what the results mean
  • Surgical Procedures – learn about any of a broad range of surgical procedures, how to prepare for your surgery, how it is performed, what recovery is like and potential complications
  • Injuries – learn about the symptoms, diagnoses and treatments for a broad range of injuries


    http://health.discovery.com/encyclopedias/otherdatabases.html

    Family Caregiving 101
    The site, sponsored by the National Family Caregivers Association and the National Alliance for Caregiving, is designed to provide caregivers with the basic tools, skills and information they need to protect their own physical and mental health while they provide high quality care for their loved one. It is also a place for family caregivers to return again and again as new levels of caregiving are reached. Advertising messages, crafted with the assistance of family caregivers themselves, assure caregivers across America that they are not alone, and encourage caregivers to take better care of themselves and their loved one by visiting the site and asking for help.


    http://www.familycaregiving101.org

    Health Grades

  • For profit organization that was “described as one of the 50 ‘Most Incredibly Useful Sites’ by Yahoo Internet Life and ‘innovative’ by Forbes magazine”
  • Works closely with the Leapfrog Group to disseminate information on hospital patient safety activities to consumers, payers and employers
  • For $29.95, you can receive a report on a specific doctor that includes education, background, board certifications and state/federal disciplinary actions. Information is also available on hospitals and nursing homes


    (303) 716-0041
    http://www.healthgrades.com

    healthfinder®
    (Key resource for finding the best government and nonprofit health and human services information on the Internet)
    A service of the National Health Information Center, U.S. Department of Health & Human Services

  • healthfinder® links to carefully selected information and web sites from over 1,500 health-related organizations


    http://www.healthfinder.gov


    Hospital Compare (provided by the Unites Sates Department of Health and Human Services)
    This website was created through the efforts of the Centers for Medicare & Medicaid Services (CMS) and the Hospital Quality Alliance (HQA). Hospital Compare has quality measures on how often hospitals provide some of the recommended care to get the best results for most patients. You will see some of the recommended care that an adult should get if being treated for a heart attack, heart failure or pneumonia, or having surgery. This information helps you, your health care provider, family, and friends compare the quality of care provided in the hospitals that agree to submit data on the quality of certain services they provide for certain conditions. This quality information not only helps you make good decisions about your health care, but also encourages hospitals to improve the quality of health care they provide.


    Quality information is not available on this website for children’s, psychiatric, rehabilitation or long-term care hospitals because they generally do not treat adult patients for heart attack, heart failure or pneumonia or perform surgeries on adults.


    (877) 696-6775
    http://www.hospitalcompare.hhs.gov>


    Joint Commission On Accreditation Of Healthcare Organizations (JCAHO)

  • Select “For Accredited Organizations
  • Go to Quality Check
  • Select “Search by Zip Code” or “Search by Name” and follow instructions
  • Note – the reports take a VERY long time to load (even with high-speed). Unless you want details, all you really need to know is if the hospital is accredited


    (630) 792-5000
    http://www.jointcommission.org


    Medline Plus (a service of the U.S. National Library of Medicine and the National Institutes of Health – your tax dollars at work)

  • I would have liked to give you a link to the online Physician’s Desk Reference (PDR), but, without medical credentials, you have to pay for this service
  • Site contains great drug information
  • Not sponsored by any drug company so you don’t get those pesky pop-ups or one-sided views.
  • Drawback – you have to know the generic name of the drug (e.g., I tried to look up Dilantin and found it under Phenytoin)
  • If this happens to you, just type in the drug name in their Search Medline Plus box at the top of each page


    http://www.nlm.nih.gov/medlineplus/druginformation.html

    Medscape Medical News (online medical news board written by and for the medical community)

  • Select Newsletters and determine which one(s) you are interested in receiving
  • When asked for you position in medicine, I selected “consumer/other”
  • You can do research on Medscape about specific medical conditions plus you receive updates as they occur in medicine and research
  • I don’t understand everything I read here but I still find it to be a very valuable resource


    http://www.medscape.com/medscapetoday?src=hdr


    Patient Advocate Foundation

  • National non-profit organization
  • Serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys


    (800) 532-5274
    http://www.patientadvocate.org

    People’s Medical Society®
    Goals include to –

  • Place previously unavailable information into the hands of ordinary people so that they can make informed decisions about their own health care
  • Publish information designed to make every American a smart health care consumer
  • Investigate and expose incidents of arrogance, incompetence and greed in organized medicine
  • Protect the freedom to choose alternative providers of health care services
  • Make the prevention of disease the top priority of American medicine
  • Work toward creating an American health care system that is affordable, compassionate and centered around the needs of people


    (610) 770-1670
    http://www.peoplesmed.org

    United Health Foundation
    Established in 1999 as a nonprofit, private foundation with a mission to support the health and medical decisions made by physicians, health professionals, community leaders and individuals that lead to better health outcomes and healthier communities.

  • Provides annual report entitled, “America’s Health: State Health Rankings”


    http://www.unitedhealthfoundation.org


    Your Personal Medical Assistant (PMA)
    A system designed so that you can easily organize and access your health-related documents and information. Your PMA contains everything you need in one easy-to-find and easy-to-remember location. Why do you need this? Your PMA organizes your health information and makes your critical information portable for easy reference during appointments.


    Your PMA –

  • Bright, easy to read, useful forms to track your health issues
  • Provides you with multiple copies of each of 8 forms
  • Contains all you need to get started
  • A complete package costs $19.95
  • Order online or contact Strong Consulting


    (888) 332-6297

    http://www.anurseatyourside.com/pma.php


    Web MD Health (a website by “trusted research organizations, manufacturers, and other leaders dedicated to treating and managing your health”)


    Provides helpful information on –

  • Diseases and conditions
  • Check symptoms
  • Medical library
  • Drugs and herbs
  • Health tools
  • Clinical trials
  • Medicare Rx benefits
  • Health plan


    http://www.webmd.com



    As Werner von Braun once said, “Research is what I’m doing when I don’t know what I’m doing.” And, most of us start here!

    JARI HOLLAND BUCK is a business consultant, medical layperson, Reiki Master and Shamanic Practitioner who spent 7-1/2 months in four hospitals with her critically ill husband. During 5+ months on life support, every organ in his body failed, yet he survived. Learn more about how to be an advocate in her book, Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your Loved Ones, winner of the 2006 Parent to Parent Adding Wisdom Award and finalist in the Fresh Voices of 2006 Health category.

  • Avatar Written by Jari Holland Buck

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