Internet Resources
For Patients and Families
- General Resources
- Advance Care Planning
- Pain Control and Palliative Treatment
- Information on Hospice
- Disease, Treatment, and Support
- Medical Search Engines (for research)
GENERAL RESOURCES
An international archive specializing in all aspects of death and dying. Includes vast amount of right-to-die materials, services, and resources, information on living wills and an online bookstore with over 3,000 titles.
Death in America, Project on: Death, Dying, Bereavement
- This site connects you to a broad network of organizations involved in public education and policy, with an emphasis on expanding the dialogue surrounding death and bereavement.
Rob Neils comprehensive site on death with dignity issues
Actively supports the right of the terminally ill to choose the time and method of death, within the bounds of the law; site offers detailed description of the program and procedures.
Current listing of laws concerning euthanasia
(ERGO) Euthanasia Research & Guidance Org.
Aimed at improving the research of physician-assisted dying for terminally ill persons.
An update from the Canadian society Dying With Dignity newsletter on global concerns and issues surrounding euthanasia.
- Growth House
The international gateway to resources for life-threatening illness and end of life care and decision making. Includes a large section on Death With Dignity.
ADVANCE CARE PLANNING & THE RIGHTS OF THE DYING
Bioethics Center of the University at Buffalo
A guide to health care decision making, including advance directives, life sustaining treatment, and legal issues.
Center to Improve Care of the Dying
Direct link to the Center's advance planning questionnaire. The Center's home page can be found here at http://www.gwu.edu/~cicd/
Explanation of advance directives, with forms for every state available by downloading or mail order.
- End-of-Life: Exploring Death in America (A series from National Public Radio)
This site includes a fairly wide-ranging reference list, transcripts of the broadcasts, and many RealAudio clips where you can hear the broadcasts replayed.
Growth House: Guide To Death, Dying, Grief, Bereavement, and End Of Life Resources
An excellent source for links to a variety of organizations and resources related to death and dying.
- Innovations in End-of-Life Care
This site, a project of Last Acts, is of special interest to health care professionals and administrative leaders of health care organizations. It includes an international peer reviewed online journal and a discussion forum for ideas and innovations in the field of end-of-life care. The site welcomes submissions to the journal from all professionals. Information is available on the site.
- This evolving site provides information on the Robert Wood Johnson Foundation's Last Acts Campaign. Its extensive resources include press releases, an electronic newsletter, current activities in the project, and grant information.
- For downloads of living wills from across the United States
Philadelphia Inquirer Series: Seeking a Good Death
- Five-article series addresses the rights of the dying and traces personal stories about end-of-life decision making.
An excellent collection of links related to advance directives, living wills, and durable power of attorney.
University of Washington School of Medicine: Bioethics Resources
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An excellent site for practical and accessible information on a range of ethical issues. "Bioethics Related Websites" includes links to sites for beginners in the bioethics field and suggestions of top sites for bioethics related topics.
PAIN CONTROL AND PALLIATIVE TREATMENT
American Academy of Hospice and Palliative Medicine
AAHPM is an organization for physicians who are committed to furthering and fostering the practice of hospice/palliative care for the terminally ill and their families.
American Academy of Pain Management
This resource provides the names of credentialled pain practitioners and pain management programs by zip code; offers direct access to the National Pain Data Bank for outcome measurement; provides links to other pain-related sites; and has information about the agenda for the annual clinical conference in September for each year.
American Academy of Pain Medicine
The mission of the American Academy of Pain Medicine is to provide quality care to patients suffering with pain, through the education and training of all physicians, through research, and through the advancement of the specialty of Pain Medicine.
APS is a nonprofit multidisciplinary educational and scientific organization dedicated to serving people in pain, through research, education, treatment, and professional practice.
- Growth House
The international gateway to resources for life-threatening illness and end of life care and decision making. Includes a large section on Palliative Care.
This web site provides a guide and index of internet information to those in pain. This site is targeted to care givers, family and friends of those suffering from pain.
A specific set of links devoted to the treatment of cancer pain.
Medical College of Wisconsin Palliative Care Program
This program is committed to improving care for the dying in America through the development, implementation, and dissemination of innovative education and clinical care programs.
Provides another valuable set of resources, including how to contact physicians specializing in the treatment of pain.
A site established by a hospice nurse listing another set of valuable resources. Highly recommended!
- The Palliative Page
Here you can find extensive links to a wide range of international and domestic sites. The site is managed by a palliative care nurse.
The Place of Palliative Medicine
From the "All Things Considered" television broadcast, a transcript featuring Robert Segal on the use of palliative medicine vs. euthanasia.
This site provides professional, research, and self-help resources for health care workers, researchers, and parents caring for children in pain.
UW Pain and Policy Studies Group
The UW Pain and Policy Studies Group is the study of public policy in relation to pain management, identifying and addressing the barriers to medical use of opioid analgesics.
INFORMATION ON HOSPICE
This site provides another reliable source of information. It includes an index of hospice and palliative care resources, original articles, a chatroom, a question and answer forum, and job and education information for hospice students and professionals.
National Hospice and Palliative Care Organization
The main web page of the NHO. Founded in 1978, the National Hospice Organization is the oldest organization devoted exclusively to hospice care.
A direct link to the National Hospiceand Palliative Care Organization's database of hospice programs across the United States.
The Boston Globe: Choosing a Good Death
An in-depth series of stories, about five individuals facing death, with focus on hospice in end-of-life care.
Supports the hospice concept through educational programs and grants; site includes online version of Journeys, a newsletter to help individuals deal with grief and loss.
Excellent introduction and overview; full of useful information.
A link to professional hospice organizations around the world from Africa to Asia to Europe and America.
INFORMATION FOR PATIENTS AND FAMILIES ON DISEASE, TREATMENT, AND SUPPORT
Cancer: General
Overview of the organization, along with information about the disease, and clickable map to locate programs in each state of the union.
Association of Cancer Online Resources, Inc.
The Association of Cancer Online Resources, Inc. (ACOR) is a nonprofit patient advocacy organization founded to develop, support, and represent Internet-based resources providing high-quality, up-to-date information and support to cancer patients, and to provide open communication channels between and among patients, health professionals, and research scientists.
- Cancer Care, Inc
This site has an extensive list of web page links for cancer resources. Cancer Care, Inc. provides support groups, educational programs, and workshops for cancer patients and their families. They also operate a national referral service, and counselors on staff provide assistance to caller
Cancer Net is a wide range of accurate, credible cancer information from the National Cancer Institute. The comprehensive cancer database includes summaries on cancer treatment, screening, prevention, and supportive care as well as information on ongoing clinical trials.
Mautner Project for Lesbians with Cancer
Memorial Sloan-Kettering Cancer Center
Memorial Sloan-Kettering Cancer Center's Web site provides a wide range of information for medical professionals, patients, their families, and the general public.
- The Rory Foundation
- The Rory Foundation is a non-profit Cancer Treatment Research/Reference Library & Foundation. This site provides a centralized and comprehensive database of information on results of successful cancer treatments and therapies, and other cancer related resources.
Cancer: Specific
Breast Cancer
Lung Cancer
Alliance for Lung Cancer Advocacy, Support and Education (ALCASE)
Ovarian Cancer
Prostate Cancer
Alzheimer's
National voluntary organization dedicated to research, education, and support services; site features online caregiver publications, including a brochure on the 10 warning signs of Alzheimer's.
Provides basic information, research developments, links to international Alzheimer's resources, and chat forum for caregivers.
A place to post and read personal stories about coping with caregiving to Alzheimer's patients.
Laboratory of Genetics and Aging: Alzheimer's Disease Research
Maintained by Massachusetts General Hospital to present latest research; includes online journal, Alzheimer's Disease Review.
HIV Disease
An AIDS and HIV information and resource center.
MEDICAL SEARCH ENGINES: INFORMATION ON RESEARCH & PUBLICATIONS
The National Library of Medicine
NLM offers PubMed and Internet Grateful Med, two free systems to search MEDLINE. They both:
- Provide an easy way to search the 11 million references and abstracts in the MEDLINE database;
- Use PubMed's retrieval engine to link to over 700 journals for full text of articles (some publishers may require a subscription) and provide pre-computed sets of relevant MEDLINE articles;
- Offer NLM's Medical Subject Headings for searching; and
- Use Loansome Doc for document delivery services (there may be local charges).
Internet Grateful Med Also provides access to other NLM databases on AIDS, bioethics, history of medicine, toxicology, health services research, and other topics.
For consumer health information, consider MEDLINEplus.
