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
Aging With Dignity
PO Box 1661
Tallahassee, FL 32302-1661
Telephone: (888) 5WISHES (594-7437)
Fax: (850) 681-2481

http://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. Worth a visit if you are providing care for a loved one.
 

Caregiver Media Group
Caregiver.com
3005 Greene Street
Hollywood, FL 33020
Telephone: (800) 829-2734
Fax: (954) 893-1779

http://www.caregiver.com
Caringbridge.org

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.
 

CaringBridge
1995 Rahn Cliff Court
Suite 200
Eagan, MN 55122
Telephone: (651) 452-7940
Fax: (651) 681-7115

http://www.caringbridge.org
Caring Connections
 
A program of the National Hospice and Palliative Care Organization (NHPCO), a national consumer engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
  • provides free resources and information to help people make decisions about end-of-life care and services before a crisis
  • helps people connect with the resources they need, when they need them
  • brings together community, state and national partners working to improve end-of-life care
  • spearheads a national consumer engagement campaign called It's About How You LIVE
  • provides free Advanced Directives
National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, Virginia 22314
Telephone: (703) 837-1500
Fax: 703/837.1233 (800) 658-8898

http://www.caringinfo.org

Centers For Disease Control And Prevention
(part of the Department of Health and Human Services)
 
Site contains information about -
  • Existing and emerging diseases
  • Emergency Preparedness & Response
  • Environmental Health
  • Genetics and Genomics
  • Health Promotion
  • Injury and Violence
  • Travelers' Health
  • Vaccines & Immunizations
  • Workplace Safety & Health
Centers for Disease Control and Prevention
1600 Clifton Road
600 Clifton Road
Atlanta, GA 30333, U.S.A
Telephone: (800) 311-3435

http://www.cdc.gov

Consumer Reports Best Buy Drugs

Helps you learn about more affordable drug treatment options to discuss with your doctor
 

http://www.crbestbuydrugs.org/
Discovery Health TV
Diseases and Conditions (ignore the ads…)
 
Information provided under the following categories -
  • Nutrition Index – “by using our Nutrition Index, you'll discover how to eat well, keep illness and disease at bay and enjoy life — and longevity”
  • Medical Tests – “in our Medical Tests Encyclopedia, you can learn about a broad range of tests. Learn how to prepare for your test, what to expect during the procedure and what the results mean”
  • Surgical Procedures – “in our Surgery Encyclopedia, you can learn about any of a broad range of surgical procedures. Learn how to prepare for your surgery, how it is performed, what recovery is like and potential complications”
  • Injuries – “in the Injuries Encyclopedia, you can learn about the symptoms, diagnoses and treatments for a broad range of injuries”
http://health.discovery.com/encyclopedias/otherdatabases.html
Family Caregiving 101
"It’s not all up to you" campaign

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
Five Criteria for Evaluating Web Pages

A resource for you to use when evaluating the web content for your own research

"Teaching undergrads WEB evaluation: A guide for library instruction."
Kapoun, Jim.
 

Olin and Uris Libraries
Cornell University
Ithaca, NY 14853

http://www.library.cornell.edu/olinuris/ref/research/webcrit.html
Growthhouse.org

This website offers excerpts from the book, Handbook for Mortals as well as “Fast Facts and Concepts" is a series of peer-reviewed, one-page outlines of key information on important end-of-life clinical topics for educators and clinicians. I found both to be interesting and informative.
 
Telephone: (415) 863-3045

http://www.growthhouse.org
HealthGrades
 
  • 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
  • Provides reports to professional medical liability insurance underwriters for nursing homes, hospitals and physicians that assist these companies in assessing risk and verifying background information
  • For $12.95, 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
HealthGrades, Inc.
500 Golden Ridge Road, Suite 100
Golden, CO 80401
Telephone: (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
  • Provides gender, age, ethnicity data for parents, caregivers, health professionals, and others
healthfinder
P.O. Box 1133
Washington, DC 20013-1133

http://www.healthfinder.gov/

Health Literacy

Updated by Penny Glassman, Technology Coordinator, National Network of Libraries of Medicine New England Region, Shrewsbury, MA
Provides information on health literacy as an important component of health communication, medical product safety and oral health.

Sections include -
  • Definition
  • Skills Needed for Health Literacy
  • Background
  • Research Findings on Impact of Literacy
  • Economic Impact of Low Health Literacy
  • Role of the Consumer Health Librarian
  • Health Literacy Organizations and Programs
  • Bibliographies and Webliographies
  • Health Literacy Listservs
National Network of Libraries of Medicine
National Network Office
National Library of Medicine
8600 Rockville Pike, Building 38, Room B1-E03
Bethesda, Maryland 20894

http://nnlm.gov/outreach/consumer/hlthlit.html
Hospicecare.com

This website offers huge selection of information about hospice & palliative care services including contact information for state-specific resources and a newsletter.
 

International Association Hospice and Palliative Care
5535 Memorial Drive
Suite F - PMB 509
Houston TX 77007 USA
Telephone: (866) 374 2472
Fax: (713) 880-2948

http://www.hospicecare.com/contact.htm
 
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), an agency of the U.S. Department of Health and Human Services (DHHS) along with 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.
 

The U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Telephone: (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
The Joint Commission
One Renaissance Boulevard
Oakbrook Terrace, IL 60181
Telephone: (630) 792-5000

http://www.jointcommission.org/AccreditationPrograms/
 (for accreditation)
http://www.jointcommission.org/PatientSafety/NationalPatientSafetyGoals
(for Patient Safety goals, web address for annual report changes every year)
http://www.jointcommission.org/PatientSafety/NationalPatientSafetyGoals/
 (for Patient Safety goals)
 

MDLinx
(a drug-sponsored site so be prepared for advertising)
  • Click “Medical Newsletters” to view the list of specialties
  • Good if you want to learn about specific specialty
  • There is a Newsletter targeted at Patients
  • Be sure you “uncheck” the following boxes (unless you are interested…)
I would be interested in participating in market research, for honoraria.

Please send me targeted information from third parties about their products/services.
 

MDLinx
1232 22nd Street, NW
Suite 200
Washington, DC 20037
Telephone: (202) 293-2288
Fax: (202) 293-1690

http://www.mdlinx.com/medical_newsletters.cfm
 

Medem, Inc.
(a physician sponsored site connecting physicians and patients online)
 
Click “For Patients” to view the list of options including -
  • Create an iHealthRecord
  • What Is an iHealthRecord
  • Sign up for Education Programs
  • Start Using Online Consultation
  • Find a Physician on the Medem Network
649 Mission Street
2nd Floor
San Francisco, CA 94105
Telephone: (877) 926-3336
Fax: (415) 644-3950

http://www.medem.com
 

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 info
  • 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/medscapetodayhome?src=hdr
 
Medscape Palliative Care Resource Center

This Resource Center offers a collection of the latest clinical information on end-of-life care for adults and children, as well as information on supporting caregivers.
 

http://www.medscape.com/resource/hospice
National Hospice and Palliative Care Organization (NHPCO)

NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. On this site you can -
 
  • Search for a care provider by name, city, state, zip code and see the types of services they offer
  • Search for members of the National Council for Hospice and Palliative Professionals
  • Search for vendors that specialize in the hospice and palliative care field
  • Find an end-of-life coalition in your community

National Hospice & Palliative Care Organization
1700 Diagonal Road
Suite 625
Alexandria, Virginia 22314
Telephone: (703) 837-1500
Fax: (703) 837-1233

http://www.nhpco.org
National Public Radio (NPR) Medical Newsletter
 
  • Very user-friendly
  • Focuses on changing general health issues
  • Can’t sign-up to receive so must sign-in daily
635 Massachusetts Avenue, NW
Washington, D.C. 20001
NPR Directory
Telephone: (202) 513-2000
Fax: (202) 513-3329

http://www.npr.org/templates/topics/topic.php?topicId=1027
 

Pain and Palliative Care Reporter

The Palliative Care Reporter collects and disseminates legal materials and links that will assist attorneys and other advocates for -

  • Patients who are in pain or who have a terminal illness
  • Patients and families facing legal issues relating to withdrawing treatment at end of life
  • Patients and families who have experienced poor pain management by their HMOs or doctors
  • Doctors and other medical professionals who want to understand their rights and obligations under state and federal law
  • Doctors or other medical persons who are under investigation for pain management prescription for legitimate pain patients.
Pain and Palliative Care Reporter
Bazelon Center for Mental Health Law
1101 Fifteenth Street NW
Suite 1212
Washington D.C. 20005
Telephone: (202) 467-5730
Fax: (202) 223-0409

http://www.painlaw.org
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
700 Thimble Shoals Blvd.
Suite 200
Newport News, VA 23606
Telephone: (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
P.O. Box 868
Allentown, PA 18105-0868
Telephone: (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
 

9900 Bren Road East
Minnetonka, MN 55343

http://www.unitedhealthfoundation.org/
 

U.S. Living Will Registry

“The mission of the U.S. Living Will Registry is to promote the use of advance directives through educational programs, and to make people’s health care choices available to their caregivers and families whenever and wherever they are needed, while maintaining the confidentiality of their information and documents.”

  • Provides Living Will and Advanced Directive information and storage
  • Contains interesting links to healthcare organizations for lay people
U.S. Living Will Registry
523 Westfield Avenue
P.O. Box 2789
Westfield, NJ 07091-2789
Telephone: (800) LIV-WILL (800) 548-9455
Fax: (908) 654-1919

http://www.uslivingwillregistry.com
 

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 -
  • Is 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 via website or or contact Strong Consulting.
 

Strong Consulting
3 Castle Hill Court
Vallejo, CA 94591
Telephone: (888) 332-6297

website: http://www.anurseatyourside.com/store.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 & Conditions
  • Check Symptoms
  • Medical Library
  • Drugs & Herbs
  • Health Tools
  • Clinical Trials
  • Medicare Rx Benefits
  • Health Plan
111 8th Ave
7th Floor
New York, NY 10011
Telephone: (212) 624-3700

http://www.webmd.com/webmd_today/
 


home   the book   the author   expectations   reviews   resources   tools   terminology   medical updates   media kit


Unless otherwise indicated, all contents of this site and the book
Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved Ones
are copyright Jari Holland Buck. All Rights Reserved.