Comprehensive Resources and Related Topics

Comprehensive Resources

• Healthwise  
  
  Healthwise is a Web site that provides interactive decision support tools and reliable medical facts that are available to help individuals make end of life care decisions.
• EDELE   
  
  This website offers data resources and search strategies on dying and end-of-life issues.  EDELE has useful data about decedents, dying and end-of-life experience.
• Palliative Care Policy Center
  
  This website offers expert support to a wide range of facilities that serve individuals who are at the end of life.
• GrowthHouse.org
  
  GrowthHouse.org works to improve care for the dying. This website acts as a gateway to resources for life-threatening illness & end-of-life issues. Features an excellent search engine for topics related to end-of-life care.
• Promoting Excellence in End-of-Life Care
  
  This website provides reference material on end-of-life care.
• Agency for Healthcare Research and Quality
  
  This website is an excellent source of information on quality and patient safety,
• End of Life Issues
  
  This website created through Medline Plus (a service of the NIH) is very comprehensive. It covers everything from advance
  directives, to palliative care, death and dying, coping, and the practical considerations that must be made, such as funeral arrangements and financial issues. The website is also a source for answering medical questions.
• Last Acts Program
  
  The Last Acts website was created by the Robert Wood Johnson Foundation as part of the Last Acts program. The Last Acts program created quality web content about end-of-life care, covering a wide range of issues.
• Innovations in End-of-Life Care
  
  The Innovations in End-of-Life Care is an online, peer-reviewed journal that aims to identify promising practices in end-of-life care while providing useful tools and resources.
• National Initiative for the Care of the Elderly
  
  Based in Canada, NICE disseminates research and “best practices” for the care of older adults.
  
• Institute for Healthcare Improvement: Last Phase of Life  
  
  The Institute for Healthcare Improvement provides a website with comprehensive resources about a wide variety of topics in health care.  This link takes you to the page discussing how to improve care during the last phase of life, but there are many other topics that can also be accessed. 
  
• MedConsumer.info 

        Provides links to national and international healthcare resources on an ever increasing
        range of health topics.  What is unique about MedConsumer.info is that is provides
        links to patient published Web sites and online discussions.                

• InfoRochester.com  
  
  Provides links to Rochester and Upstate healthcare resources. 

Related Topics

Caregiver Resources

• Second Opinion: Caregiver's Diary and Resource Guide 
  
  English and Spanish
  
  Second Opinion is an award-winning PBS health series.  This Caregiver's Diary and Resource Guide can be used to help individuals manage their loved one's health care and find the resources caregivers may need for themselves.
  
• Second Opinion for Caregivers 
  
  Second Opinion is an award-winning PBS health series.  The Second Opinion television show has had three episodes on caregiving which are available on this website.
  
• Second Opinion for Caregivers Transcripts   
  
  Second Opinion welcomes and encourages you to view helpful weekly transcripts where a healthcare team solves a real medical mystery.   Topics include: Alzheimer's Disease: A Caregiver's Journey, Caregiver Burnout and Kidney Disease: Caring for Someone With a Chronic Disease.  Each transcript is available in English and Spanish.
  
• Mercy Respite for Caregivers   
  
  Mercy Respite for Caregivers offers a multi-program approach of mind, body, and spirit to meet the needs of family caregivers, professional caregivers, grandparents raising grandshildren, and inter-faith communities.
  Click on this link to print the Mercy Respite for Caregivers brochure and registration.

Healthy Aging

• "10 Commandments for Healthy Aging"
  
  
• Aging with Dignity
  
  Educates people on the rights of the elderly and how they can control their final days.
  
  
• The Nursing Home Guide 
  
  Website for the book "The Nursing Home Guide," written by Dr. Joshua Schor.  This book provides a guide for placing loved ones in a long-term care facility.
  

Elder Abuse

• Elder Abuse Awareness and Prevention
  
  This site is dedicated to raising awareness about elder abuse. Multiple tools are available and provided at no cost.
  
  
• "Observing and Addressing Financial and Material Exploitation of Older Adults," an online course sponsored by the New England Maine Geriatric Education Center and AARP. 
  
  This free online course is intended for healthcare professionals, health professions faculty and students to help them develop a better understanding of financial and material exploitation/abuse against older adults -- whether committed by family members, friends, individuals in a position of trust, strangers, or caregivers.

Pharmaceuticals 

• ClinicalTrials.gov
  
  This website was created by the NIH to help connect patients suffering from a wide variety of diseases, with focused research being done into those particular diseases. The website is searchable by disease type and by location (such as “lung cancer, Rochester, NY”). Patients can use this website to search for clinical trials into their disease that are currently happening. Health care professionals can use this site to connect their patients with clinical trials that they may find helpful.
• FDA's Office of Special Health Issues: Information for Parents
  
  The FDA Office of Special Health Issues has information about HIV/AIDS, cancer, diabetes, and other key diseases that are particularly relevant for the public. Information is provided about ongoing clinical trials for new drugs to treat these special health issues, and the site can help link patients up with ongoing clinical trials for new drugs that are meant to treat a specific disease.
• FDA Center for Drug Evaluation and Research
  
  This website is a resource for more information about specific drugs that are still in development, or are already on the market. The site has articles meant for patients and families who have questions about drugs. There are also areas of the site that are better for health care professionals, as they discuss the technical and chemical side of pharmaceuticals.

Specific Diseases

• Mesothelioma & Asbestos Cancer Resource Center
  
  The Web site for the Mesothelioma & Asbestos Cancer Resource Center provides patients, families, caregivers and professionals', education, tools and resources on cancer of the mesotheliuma, a form of asbestos cancer.  The Web site has been reviewed by a board-certified oncologist, Dr. Michael Milano.
  
• Journal of the National Cancer Institute
  
  The website for the Journal of the National Cancer Institute gives people access to articles from the journal, as well as abstracts. Most of what can be found through this website is intended for medical professionals; however, there are some short, easy-to-read articles that summarize important research in an understandable manner appropriate for patients and families.

International Health Care

• CaringInfo.com
  
  

  CaringInfo.com is a very well organized site created by the West Sussex Forum, based in England.  The website is relevant for people around the world.  Patients and families can take needs assessment quizzes, and can look at the different types of care and choices that they have.  Health care professionals can use the website to give information to patients, or to inform themselves more completely.