MEDICAL PROFESSIONALS:

• American Board of Hospice and Palliative Medicine:

• Mission: Provides information on palliative care and a directory of ABHPM certified physicians.
  

• American College of Physicians - American Society of Internal Medicine:

• Article: Living with a Serious Illness: Talking to Your Doctor When the Future Is Uncertain

• American Journal of Preventative Medicine:

• Kaplan, Robert M., "Shared Decision Making: A New Tool for Preventive Medicine", Am J Prev Med 2004;26(1), posted online by the Community Guide (4 pages, PDF).
  

• American Medical Association:

  • AMA releases new medical encyclopedia
    • Synopsis: The AMA announces the release of a new resource available to patients and their families to help them understand and become informed participants in their health care (11/29/06).
  • AMA Ethical Opinions:
    • E-2.037 -- Medical Futility in End-of-Life Care
    • E-2.20 -- Withholding or Withdrawing Life-Sustaining Medical Treatment

  • AMA Foundation -- "Health Literacy Website - Resources:

• Toolkits
• Patient safety tip cards
• Dying well in America: What is required of physicians?, by Richard Payne, MD
• Medem Learning Centers:
  • Mission: "We have grouped top articles from the nation's leading medical societies to provide you with an easy-to-navigate learning environment. You can select information on specific diseases and conditions from the drop down menus below. To help you continue with your search, each article within a center contains links out to additional resources in the Medem Medical Library."
• Journal of the American Medical Association:

• Addressing End-of-Life Treatment Conflicts through Improved Communication, by Audiey C.Kao, MD, PhD (02/2002).

• Annals of Internal Medicine:

• "National Quality-of-Care Standards in Home-Based Primary Care", by Kristofer L. Smith, MD, MPP, Theresa A. Soriano, MD, MPH, & Jeremy Boal, MD. (Vol. 146, Issue 3, Pages 188-192).
• Synopsis: Home-based primary care for homebound seniors is complex, and practice constraints are unique. No quality-of-care standards exist. The objective is to identify process quality indicators that are essential to high-quality, home-based primary care.

• Archives of Internal Medicine:

• "Toward Shared Decision Making at the End of Life in Intensive Care Units: Opportunities for Improvement", by Douglas B. White, MD, MAS; Clarence H. Braddock III, MD, MPH; Sylvia Bereknyei; & J. Randall Curtis, MD, MPH (Journal of Internal Medicine2007;167:461-467).
• Synopsis: "In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units. * * * [Conclusions:] Shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families. Higher levels of shared decision making were associated with greater family satisfaction. Shared decision making may be an important area for quality improvement in intensive care units."

• AskMe3

  • Mission: The Partnership for Clear Health Communication is a coalition of national organizations that are working together to promote awareness and solutions around the issue of low health literacy and its effect on health outcomes.

• Atlanta Journal-Constitution:

• "Families chafe at physicians' power to give up life support" -- Courts left to decide who holds patient's fate, by Andria Simmons,published in The Atlanta Journal-Constitution (02/08/08).
• Excerpt: From a legal standpoint, being brain-dead is the same as being dead.Before a patient can be declared brain-dead, two doctors must evaluate the patient on two occasions. Dr. Michael Hartman, a neurologist at Emory Eastside Medical Center, routinely removes patients from machines that support organ function after he declares brain death. Hartman said the physicians have to make the tough decisions when families can't. "If you let them take control, they will never let go," Hartman said. "I realize this lack of control families must feel when we go in, but it's part of the job." Hawkins' lawyer, Crongeyer, says that stance is "kind of a scary [thing]." * * *

• BMJ (formerly the British Medical Journal):

• "Engaging patients in medical decision making:The end is worthwhile, but the means need to be more practical", by Richard L. Kravitz & Joy Melnikow, of the U C Davis Center for Health Services Research in Primary Care, Sacramento, CA, published in BMJ 323:584-585 (09/15/01).

• Center for Behavioral and Decision Sciences in Medicine:

  • Mission: CBDSM is a joint program of the University of Michigan and the VA Ann Arbor Health System that conducts basic behavioral science research to be applied in health care settings to improve the way people make health care decisions.

• Chen, Pauline W., Final Exam: A Surgeon's Reflections on Mortality:
  

• Source: Book published by Alfred W. Knopf (2007, 268 pages).
• Op-Ed Article: "The Most-Avoided Conversation in Medicine" , by Pauline W. Chen in the New York Times, (12/26/06).
• Article: "Morbidity and Mortality: A Surgeon Under Exam", by Pauline W. Chen, in the Virginia Quarterly Review (Spring, 2007).
• Book Review: "Why physicians fight the wisdom of death", by John Vaugh, of the San Francisco Examiner (01/21/07).
  
• Book review: "Doctor Confronts the Human Drama's Inevitable Finale", by William Grimes, of the New York Times (01/10/07).
• See also: "Dead Enough?: The Paradox of Brain Death", by Pauline W. Chen, in the Virginia Quarterly Review (Fall, 2005).
• See also: Physicians on Mortality & Dying, Part I, by Neil E. Hendershot -- A blog commentary with links to other reviews on the book.
  

• Cooper, Alan, & Jan Swanson, A Physician's Guide To Coping With Death And Dying:

• Published by McGill-Queen's Press (2005), 216 pages.
• Synopsis: "Education about death and dying has been almost ignored in medical schools. Recently, however, it has become increasingly obvious that the preferences of dying patients are being ignored, leaving many patients to die lonely, scared, and in pain. There is a growing realization that physicians can help dying patients achieve a more peaceful death and increased recognition that good end-of-life care is not just the province of specialized hospice physicians or nurses. In A Physician's Guide to Coping with Death and Dying Jan Swanson and Alan Cooper, a physician and a clinical psychologist with many years of experience, offer insights to help medical students, residents, physicians, nurses, and others become more aware of the different stages in the dying process and learn how to communicate more effectively with patients and their families. They also discuss the ways physicians and other caregivers can learn to reduce their own stress levels and avoid the risk of burnout, allowing them to achieve balance in their lives and be more effective professionally. The authors use case examples and thought-provoking exercises to provide a personal learning experience. [The book] includes an extensive bibliography and a unique web resource section with contacts to many organizations working with patients suffering from life-threatening illnesses."
  

• Dartmouth-Hitchcock's "Center for Shared Decision Making":

  • Resources:
    • Decision Aid Library of helpful videotapes, audiotapes, booklets, CD-ROMs, and websites, including one regarding Elder Care / End of Life

• Healthcare Decision Guide worksheet to help you work through a decision on your own.

• Education for Physicans on End-of-Life Care (EPEC):

• Mission: Education for Physicians on End-of-life Care (EPEC) project is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care.
• Resources: A comprehensive set of training materials is available.

• End-of-Life Nursing Education Consortium (ELNEC) Project

• End of Life Physician Education Resource Center (EPERC):

• Mission: Central repository for educational materials and information about end of life issues designed for physicians and other educators.
• Resources: After registration one has full access to the "educational resources" link, including a series of one-page publications called "Fast Facts."
• References:
• Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Center Report. 34(2):30-42, 2004.
• Ditto PH, Smucker WD, Danks JH, Jacobson JA, Houts RM, Fagerlin A, Coppola KM, Gready RM. Stability of older adults' preferences for life-sustaining medical treatment. Health Psychology. 22(6):605-615, 2003.
• Fagerlin A, Ditto PH, Hawkins NA, Schneider CE, Smucker WD. The use of advance directives in end-of-life decision making: problems and possibilities. American Behavioral Scientist. 46(2):268-283, 2002.
• Lockhart LK, Bookwala J, Fagerlin A, Coppola KM, Ditto PH, Danks JH, Smucker WD. Older adults' attitudes toward death: links to perceptions of health and concerns about end-of-life issues. Omega. 43(4):331-347, 2001.
• Fagerlin A, Ditto PH, Danks JH, Houts RM, Smucker WD. Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology. 20(3):166-175, 2001.
• Bookwala J, Coppola KM, Fagerlin A, Ditto PH, Danks JH, Smucker WD. Gender differences in older adults' preferences for life-sustaining medical treatments and end-of-life values. Death Studies. 25(2):127-19, 2001.
• Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM, Dresser R, Fagerlin A, Gready RM, Houts RM, Lockhart LK, Zyzanski S. Advance directives as acts of communication: a randomized controlled trial. Archives of Internal Medicine. 161(3):421-430, 2001.
• Smucker WD, Houts RM, Danks JH, Ditto PH, Fagerlin A, Coppola KM. Modal preferences predict elderly patients' life-sustaining treatment choices as well as patients' chosen surrogates do. Medical Decision Making. 20(3):271-280, 2000.

• Floridian / St. Petersburg Times:

• "A lesson in dying", by John Barry, Deputy Editor (02/04/07).
  
• Synopsis: While medical students dream of saving lives, the University of South Florida tries to make sure those students are also equipped to deal with death.

• Foundation for Informed Decision Making:
  

  • Mission: A non-profit organization dedicated to assuring that people understand their choices and have the information they need to make sound decisions affecting their health and well being.

• George Washington Institute for Spirituality and Health (GWish):

• Mission: Established in 2001, GWish is a university-based organization working toward a more compassionate system of healthcare by restoring the heart and humanity of medicine through research, education, and policy work. GWish focuses on bringing increased attention to the spiritual needs of patients, families, and the healthcare professionals.
• Resource: "FICA" test for the spiritual history of healthcare professionals.
  

• Healthcare Republic:

• "We must be prepared to talk about death", by Barbara Stuttle, a nurse (02/07/07).
• Synopsis: "A friend once told me there are two things nurses don't talk about - sex and death. When it comes to sex we tend to only record whether someone is male or female. Likewise if we look through patient notes, death or dying may be mentioned, but it will often say 'not discussed'."

• Hoefler, James M., Managing Death:

• Published by Westview Press (Sept, 1997).
  
• Synopsis: The author "discusses 'the medical, legal, ethical, and clinical issues associated with end-of-life decision making on behalf of those who have become irreversibly incompetent before an inevitable (if not imminent) death.' After comprehensively reviewing the opinions of authoritative medical and ethical groups, Hoefler concludes that there is a broad-based consensus about which principles should guide decision making when death approaches. One of these principles, which are a thread running through the book, is the patient's right to refuse treatment. When patients are irreversibly incompetent, surrogates should make decisions based on what they think the patients would have wanted, or else on what they feel would be in the patients' best interest."
  
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• Kiernan, Stephen P., Last Rights: Rescuing the End of Life From the Medical System:
  

• 320 pages, published by St. Martin’s Press (11/14/06).
• See also:"Life Force! Dr. Ira Byock is changing the way people die by changing the way they live", by Stephen Kiernan, appearing in the Boston Globe (01/14/07).

• Levine, Carol, Taking Sides: Clashing Views on Controversial Bioethical Issues:

• A textbook published by McGraw-Hill, 11th Ed. (04/29/05).
  
• Synopsis: "This debate-style reader is designed to introduce students to controversies in bioethical issues through readings that reflect a variety of viewpoints. Each issue is framed with an issue summary, an issue introduction, and a postscript. The Taking Sides readers feature annotated listings of selected World Wide Web sites. Taking Sides is supported by our student website."
  

• NHS Blog Doctor:

• "Living Wills", a posting by Dr. John Crippen, a treating physician within the British National Health Service (02/13/07).
• "The Right to Die", a posting (02/12/07).
  

• Patient Decision Aids:

  • Mission: The research of the Patient Decision Aids group, of the Ottawa Health Research Institute, helps patients & their health practitioners make "tough" health care decisions that have many options, uncertain outcomes/benefits, and harms which are valued differently.
  • Resources:
    • Ottawa Personal Decision Guide -- A tool for any "tough" decision (08/05).
      
    • Ottawa Decision Aids -- A list of the decision aids developed and evaluated in Ottawa.
      
    • A to Z Global Inventory of Patient Decision Aids -- A global inventory of available patient decision aids.
    • Resource Links re patient decision aids.

• Pennsylvania Academy of Family Physicians:
  

• "Act 148 -- PA’s Confidentiality of HIV-Related Information Act: How It Impacts the Family Physician", by David W. Webber, Esq. (May/June, 2006).

• Pennsylvania Medical Society -- "My Family's Wellness":

• "My Patient and I . . . ", by Christopher M. Hughes, M.D., Critical Care Specialist, Pittsburgh, PA, & a Trustee of the Society.

• Scientific American:

• "When to let go? Medicine's top dilemma", by Tom Heneghan (07/16/07
• Excerpt: "End-of-life issues top the list of ethical dilemmas hospitals face as medical progress enables doctors to extend an endangered life to the hard-to-determine point where they may actually only be dragging out death.* * * These patients used to just die naturally, but now it might be doctors, hospital ethics committees or courts that decide if and when to let them. The more science discovers, especially about the brain, the harder it can get to make that decision. * * *

• Society for Medical Decision Making:

  • Mission:"[T]o improve health outcomes through the advancement of proactive systematic approaches to clinical decision making and policy-formation in health care by providing a scholarly forum that connects and educates researchers, providers, policy-makers, and the public."
  • Resources: See its Resource Links page here.

• Swift, Cynthia, The Whisper:

• Published by Infinity Publishing, 54 pages (11/17/06).
  
• Synopsis: "The Whisper brings a well-rounded approach to understanding the natural process of dying. By teaching and sharing experiences in a simple way, readers are better able to embrace this last stage of life. Swift has been a nurse for twenty-six years. She has worked in all areas of nursing from O.B., family practice and trauma to residential hospice. With years of long term care experience, she has been an invited speaker for Health Care Association of Michigan on End of Life Issues and Palliative Care in nursing for health professionals."
  
• Review: "The Whisper -- When a loved one is dying, nurse is a guide", by Lisa Carolin, published in the Ann Arbor (MI) News (02/16/07).

• University of North Carolina's Working Group on Risk, Communication & Health Care Decision Making:

  • Mission: To promote research on issues of risk communication, patient-provider communication, and shared decision making in health care settings.