A Clinical Guide to Supportive and Palliative Care for HIV/AIDS

Chapter 26. Resources


This chapter is designed to give providers the information they need and that their patients may need during the course of treatment and care. The resources are meant to be comprehensive but not exhaustive. These resources will provide links and information about other useful resources. For example, State- or region-specific resources are not listed, but can be found through the national web organizations and web sites.

The first section of the chapter is an outline of resources organized alphabetically under topics. Once a resource is listed, it is not listed under subsequent topics. The outline includes web sites, publications, and organizations.

The outline is followed by a table that lists web sites alphabetically. It should be navigated by the subheadings, which reflect the target audience and primary content on the web site.

I. General Palliative Care

Approaching Death: Improving the Care at the End-of-Life, Marilyn J. Field and Christine K Cassel, Editors; Committee on Care at the End-of-Life, Institute of Medicine

  • Offers a comprehensive report on the status of palliative care in the United States, with recommendations for future directions.

  • Published by National Academy Press: 1997, ISBN: 0-309-06372-8

  • Report can be reached at: www.nap.edu/catalog/5801.html and read on line for free; ordered through National Academy Press at www.nap.edu; or ordered by phone at 1-888-624-8373 or 202-334-3313

Building an Institutional Commitment to Pain Management: The Mayday Resource Manual for Improvement. An excellent compilation of resource material to promote institutional support of pain management; all of the sample resource tools are available on a disc.

  • Available from Wisconsin Cancer Pain Initiative, 3675 Medical Sciences Center, Univ. of Wisconsin Medical School, 1300 University Avenue, Madison, WI 53706.

  • Phone: 608-262-0278; Fax: 608-265-4014; Email: aacpi@aacpi.org; www.aacpi.org.

The Center to Advance Palliative Care: Provides information for administrators, clinicians, policymakers, and other professionals on developing palliative care programs in hospitals and other health organizations. The site also has resources for provider education.

A Comprehensive Guide for the Care of Persons With HIV Disease, Module 4: Palliative Care, FD Ferris, JS Flannery, HB McNeal, MR Morissette, R Cameron, and GA Bally, Editors.

  • Mount Sinai Hospital and Casey House Hospice, Toronto, Canada: 1995, ISBN 0-662-22924-X

The End-of-Life: Exploring Death in America, National Public Radio: A series of transcripts is offered on topics such as grief and bereavement, funeral arrangements, the place of palliative medicine, and doctors dealing with death. Internet sites, a bibliography, essays, poetry, and other "readings" are available as resources.

  • www.npr.org/programs/death/index.html

  • Audio cassettes are available by calling 1-877-NPR-TEXT (677-8398)

Five Wishes: Five Wishes is a comprehensive living will that addresses a person's personal, emotional and spiritual as well as medical wishes. It is unique among all other living will and health agent forms in posing a range of important questions. The companion booklet, Next Steps, helps the caregivers/family talk with the patient and the doctor.

  • Can be ordered for $5.00 from Aging with Dignity, P.O. Box 1661, Tallahassee FL 32302-1661

  • www.agingwithdignity.org

  • Phone: 1-888-594-7437

The GRACE Project: Part of Volunteers of America, the GRACE Project has standards of care for palliative care in correctional institutions and other resources for end-of-life care for incarcerated or recently released people with HIV/AIDS, including a handbook for caregivers and managers, a brochure on grief for people in prisons or jails, articles, and a videotape for training institutional staff.

Guidelines for Determining Prognosis for Selected Non-Cancer Diagnoses: National Hospice Organization.

  • Alexandria, FA: National Hospice Organization, 1996.

The Growth House, Inc.: Extensive resources available on living with life-threatening illnesses, and on care in death and dying. Topics on the site include HIV/AIDS, estate planning, grief, hospice and home care, pain management, and children dealing with death.

Handbook for Mortals: Guidance for People Facing Serious Illness, Joanne Lynn, M.D. and Joan Harrold, M.D., and the Center to Improve Care of the Dying, George Washington University.

  • Published by Oxford University Press: 1999, ISBN 0195116623

Improving Care for the End-of-Life: A Sourcebook for Health Care Managers and Clinicians, Joanne Lynn, M.D., Janice Lynch Schuster, Andrea Kabcenell, R.N., M.P.H.

  • Published by Oxford University Press: 2000, ISBN 0195116615

International Association for Hospice and Palliative Care: IAHPC aims to improve the development, quality, and access to hospice and palliative care around the world. Information is available through an on-line newsletter, Internet links, bookshop, events calendar, fellowships, fact sheets, and an ethical issues page.

Joint Commission on Accreditation of Healthcare Organizations: Pain management standards for accreditation of healthcare organizations.

  • www.jcrinc.com/subscribers/perspectives.asp?durki=3243&site=10&return=2897

Last Acts: A Robert Wood Johnson Foundation funded campaign. The organization aims to increase the quality of end-of-life care, stating that their goals are to bring death related issues out in the open and help individuals and organizations pursue better ways to care for the dying. Through the site, one can access an electronic newsletter, a bookshop, and various media resources.

The National Hospice and Palliative Care Organization: The organization's activities surround improving care at the end-of-life and increasing access to palliative and hospice care. Their stated goal is to profoundly enhance the quality of life for people dying in America and their loved ones. Consumer brochures on hospice care, professional education conferences, a hospice locator, hospice and palliative care statistics, and other resources are offered on the web site.

  • www.nhpco.org/

  • Find a Hospice Program (hospice locator by State or hospice name): www.nhpco.org/directory/

  • Consumer Brochures (click on National Hospice Foundation from the home page)

    • Hospice Care: A Consumer's Guide to Selecting a Hospice Program: www.hospiceinfo.org/public/articles/index.cfm?cat=3

    • Communicating Your End-of-Life Wishes: www.hospiceinfo.org/public/articles/index.cfm?cat=6

    • Hospice Care and Medicare Hospice Benefit: www.hospiceinfo.org/public/articles/index.cfm?cat=7

  • Phone: 703-516-4928; Fax: 703-525-5762; E-mail: info@nhpco.org

On Our Own Terms: Moyers on Dying: Bill Moyers hosted this four-part series for the Public Broadcasting System. The series covered major issues on death and dying in America today, such as choices at the end-of-life, the role of palliative care, and issues in policy and funding of end-of-life care. The web site offers resources on end-of-life tools, financial planning, options in clinical care, and psychosocial issues.

The Oxford Textbook of Palliative Medicine, Derek Doyle, Geoffrey Hanks, Neil MacDonald, Editors.

  • Published by Oxford University Press, 2nd Edition: 1999, ISBN: 0192630571

Palliative Care for People With AIDS, Ruth Sims and Veronica Moss.

  • Singular Publishing, 2nd edition: 1995, ISBN 1565933591

Partnership for Caring, Inc.: This non-profit organization partners individuals with organizations to increase the quality of death and dying in the U.S. The organization offers fact sheets, legal information, resource guides, advance directives information, and an informational hotline.

Promoting Excellence in End-of-Life Care: Innovative healthcare models and demonstration projects in end-of-life care are highlighted and offered technical assistance through this program. Projects are supported on various populations, diseases, and clinical settings. Evaluation tools are available on-line.

Symptom Management Algorithms: A Handbook for Palliative Care, Linda Wrede-Seaman, M.D..

  • Published by Intellicard, 2nd edition: 1999, ISBN: 188841107-4

  • Decision algorithms for assessment and management of pain and common symptoms in terminal illness

Symptom Relief in Terminal Care, Gary A. Johnson, M.D..

  • Includes a chapter on symptom management in HIV.

  • The last edition (4th) of this book is out of print. A new edition will be out shortly. Contact Sonoma County Academic Foundation for Excellence In Medicine in order to be notified of when the new book will be in print, members.aol.com/scafem/; Phone 707-527-6223; E-mail: scafem@aol.com, mailing address: 3324 Chanate Road, Santa Rosa, CA 95404

Toolkit of Instruments to Measure Care at the End-of-Life: This site offers "an authoritative bibliography of instruments to measure the quality of care and quality of life for dying patients and their families." The toolkit works on measuring the needs of patients and families with patient-focused, family-centered survey instruments.

UNAIDS Technical Update: AIDS Palliative Care, Oct. 2000: Part of the Best Practices materials, this 16-page report covers of all aspects of palliative care in HIV. The guide defines palliative care, discusses issues specific to HIV in palliative care, reviews what palliative care services are necessary for people living with HIV/AIDS, and makes recommendations for the future of palliative care. Includes some successful models from around the world.

  • Report can be downloaded in PDF format at: www.unaids.org/publications/documents/care/general/JC-PalliCare-TU-E.pdf

  • Or order by Phone: +41 22 791 4651; e-mail: unaids@unaids.org; or by mail to UNAIDS Information Centre, 20 Avenue Appia, 1211 Geneva 27, Switzerland

II. Hospice

Hospice Foundation of America: HFA is a "nonprofit organization that promotes hospice care and works to educate professionals and the families they serve in issues relating to caregiving, terminal illness, loss and bereavement." Resources offered on the site include an electronic newsletter, hospice locator, brochures, books, and videos.

  • www.hospicefoundation.org/

  • Phone: 800-854-3402; Fax: 202-638-5312; Office hours are 10:00 a.m. - 6:00 p.m. EST.

  • National hospice locator service is offered on the site and by calling.

Hospice Net: A site for patients, families, and caregivers when facing end-of-life issues in illness. Offers resources for patients and caregivers, information on locating and evaluating hospice services, and topics in bereavement.

Medicaid/Medicare Hospice Services: This site describes coverage and reimbursement of hospice through Medicaid.

  • http://cms.hhs.gov/medicaid/services/hospice.asp

National Prison Hospice Association: NPHA promotes excellence in hospice care for prisoners who are approaching death. The stated purpose of NPHA is to assist corrections and hospice professionals in their continuing efforts to develop high quality patient care procedures and management programs. The organization offer resources, a newsletter, and networking.

  • www.npha.org/index.html

  • Phone: 303-544-5923; Fax: 303-444-2824; E-mail: npha@npha.org

III. Care for the Caregiver

See Chapter 20 on Care for the Caregiver for a more detailed description of caregiver web sites.

The ARCH National Respite Network and Resource Center: The mission of this organization is "to support service providers and families through training, technical assistance, evaluation, and research." The center offers technical assistance, factsheets, and resources in respite care.

  • www.chtop.com/arch/index.htm

  • Respite Care for Children With HIV-Related Symptoms factsheet: www.chtop.com/ARCH/archfs5.htm

  • National Respite Locator Service: www.chtop.com/locator.htm or call 800-773-5433

Caregiver.com: An informational and support web site for all diseases and age groups.

Caregiver Health: This American Medical Association site was "designed to provide providers and caregivers with information and tools for assessing caregiver health and for locating additional resources to assist in reducing the risks of caregiving." It includes a caregiver self-assessment questionnaire offered in English and Spanish.

  • www.ama-assn.org/ama/pub/category/4642.html

Caregiving.com: An informational and support web site for caregivers of the elderly with educational packets.

Caring for the HIV/AIDS Caregiver, Paul A. Wilson, edited by Vincent J. Lynch

  • Auburn House: 1996, ISBN 0-86569-239-4

Caring for Someone With AIDS at Home: A guide from American Red Cross and Centers for Disease Control and Prevention. Topics covered include children with AIDS, guarding against infections, and providing care and emotional support.

  • www.cdc.gov/hiv/pubs/brochure/careathome.htm

Empowering Caregivers: A web site for all diseases and age groups with activities and a newsletter.

Family Caregiver Alliance: This nonprofit organization addresses the needs of people providing long-term home care. The site offers fact sheets in English, Spanish, and Chinese, policy information, an online support group, and other resources for caregivers.

Friends' Health Connection: A web site for all diseases and age groups in which caregivers are matched for one-on-one support. (Membership fee)

HealingWell.com: A web site for all diseases and age groups with an HIV-specific chat room and resource directory.

Health Care Exchange Initiative: This web site, which specializes in AIDS, has expert consultation on caregiver issues and organizes intercity AIDS caregiver exchanges.

National Family Caregivers Association: This web site for all diseases and age groups provides a newsletter, caregiver kits, and a resource locator service.

Queernet.com: This web site for gay, lesbian, bisexual, and transgendered people, offers an online support group for HIV/AIDS caregivers.

WebofCare.com: This informational and support web site for all diseases and age groups has a newsletter, and grief support groups.

Well Spouse Foundation: This organization for all diseases and age groups offers mentors for new caregivers, a national network of support groups, a newsletter, and letter writing "round robins."

IV. Cancer/Cancer Pain

American College of Physicians Home Care Guide for Advanced Cancer: This guide is for family members, hospice workers, and caregivers who are caring for advanced cancer patients. Information is offered on respite, pain management, symptoms, helping younger people, and grieving.

  • www.acponline.org/public/h_care/index.html

Cancer Net: This extensive site, supported by the National Cancer Institute, offers both patient and clinician resources on topics such as pain management and hospice care.

  • www.cancernet.gov/

  • Cancer Information Service, 1-800-4-CANCER (422-6237), Monday through Friday, 9:00 a.m. to 4:30 p.m.; TTY: 1-800-332-8615.

National Comprehensive Cancer Network, Cancer Pain Treatment Guidelines for Patients: This guide was created in partnership with the American Cancer Society, and is a guide for the general public on how the major cancer centers in the US treat pain.

  • www.nccn.org/patient_gls/_english/_pain/index.htm

  • Call the NCCN at 1-888-909-NCCN or the ACS at 1-800-ACS-2345 for more information.

WHO Cancer Pain Relief, 2nd edition (1996): This publication provides a proposed method for pain relief, and includes information on how pain medications are available internationally.

  • Report can be reached at www.who.int/ncd/cancer/publications/books/cancer_pain_relief.html

  • To order a copy, check your nearest sales agent at: www.who.int/dsa/cat97/zsale.htm or WHO Headquarters, WHO, Marketing and Dissemination, CH-1211 Geneva 27, Switzerland,

  • Phone: +41 22 791 24 76; Fax: +41 22 791 48 57; E-mail: publications@who.ch

V. Pediatric

A Death in the Family: Orphans of the HIV Epidemic. Carol Levine, Editor. For ordering information, call the United Hospital Fund's Publication Program at (212) 494-0700 or write to them at 350 5th Avenue, 23rd Floor, New York, NY 10118.

American Academy for Pediatrics Policy Statement on Palliative Care for Children: This statement was issued in August 2000, and "presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition." The report discusses barriers in pediatric palliative care, and makes recommendations for future services.

  • www.aap.org/policy/re0007.html

  • Journal reference: Committee on Bioethics and Committee on Hospital Care. Palliative Care for Children. Pediatrics, 106: 351-7, 2000.

Children's Hospice International: CHI is a non-profit organization for children with life-threatening illnesses and their families. The organization offers resources, advocacy, care, and support for the children and their families, as well as clinician education and training.

  • www.chionline.org/

  • CHI has worked with the Centers for Medicare and Medicaid Services (CMS) to develop an initiative in children's hospice, called the Program for All-Inclusive Care for Children and their Families (PACC), to develop demonstration programs that will have models of children's hospice care that encourage the continuum of care and decrease common obstacles in quality of children's hospice care. www.chionline.org/pacc.html

  • Toll Free Phone: 800-2-4-CHILD; Phone: 703-684-0330; Fax: (703) 684-0226; E-mail: chiorg@aol.com

  • Note that PACC is trademarked.

Elizabeth Glaser Pediatric AIDS Foundation: This non-profit organization is involved in funding research and programs in the care and prevention of HIV/AIDS in children. Parent resources, grant, award, and fellowship applications, and other resources are available on the site.

  • www.pedaids.org/index.html

  • Phone: 888-499-HOPE (4673); E-mail: info@pedAIDS.org

The Family Center: The Family Center works to create a more secure present and future for children whose parents have life-threatening illness by providing comprehensive legal and social services, education and research. Numerous books and materials available.

The François-Xavier Bagnoud Center (FXB) at the University of Medicine and Dentistry New Jersey: FXB Center provides a model for the care of mother-to-child transmitted HIV disease. The program's mission is to "deliver care that is community-based, child-centered, familyfocused, comprehensive and coordinated." The program also conducts research and provides training to health care providers.

KIDSAID: This web site is a place for children who are experiencing grief to share thoughts, picture, poems, etc. There are resources on the site for children and parents. The adult grief web site, GriefNet runs the site.

National Pediatric and Family HIV Resource Center: This center is located at the University of Medicine and Dentistry of New Jersey and is a resource for health and social service professionals who serve children, adolescents, and families with HIV/AIDS. They offer education, training and technical assistance, patient materials, and other resources.

The Orphan Project: This project explores policy options to meet the needs of the entire spectrum of affected children from dying infants to healthy adolescents. Numerous books and other materials addressing policy issues related to care of children.

  • www.aidsinfonyc.org/orphan/

WHO Cancer Pain Relief and Palliative Care in Children (1998): Taking a holistic, comprehensive approach to palliative care, this guide reviews pain management and therapy, as well as social, spiritual, and psychological issues in palliative care. The book also has information on health care provider education, and policies and legislation related to palliative care.

  • Report can be reached at www.who.int/ncd/cancer/publications/books/ca_pain_relief_pall_care_in_children.html

  • To order a copy, check your nearest sales agent at: www.who.int/dsa/cat97/zsale.htm or WHO Headquarters, WHO, Marketing and Dissemination, CH-1211 Geneva 27, Switzerland,

  • Phone: +41 22 791 24 76; Fax: +41 22 791 48 57; E-mail: publications@who.ch

VI. Clinician Education

Education for Physicians on End-of-Life Care: Supported through a Robert Wood Johnson Foundation grant, EPEC.net "is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care." The site educates clinicians through a training curriculum, speakers list, resource guide, and electronic mailing list/discussion board.

End-of-Life Nursing Education Consortium (ELNEC) Project: This site is sponsored through the American Association of Colleges of Nursing and funded by a Robert Wood Johnson Foundation grant. The project goals are to both "develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care." A nine-module curriculum is available, along with a list of nurse educators, publications on nursing in palliative care, and an on-line newsletter.

  • www.aacn.nche.edu/elnec/

  • Phone: 202-463-6930, ext. 240

  • End-of Life Care, a series of six 1-hour videotapes, offering continuing education credit. Produced by the American Association of Colleges of Nursing, the National Institute of Nursing Research, and the Association of Academic Health Centers. The video series may be ordered at www.centernet-tv.com/eol/endoflife.html or call Healthcare Management Television at 202-662-7285, ext. 5.

End-of-Life Physician Education Resource Center: EPERC is funded by the Robert Wood Johnson Foundation, and is hosted by the Medical College of Wisconsin. The site provides links to high quality information, conferences and educational materials on end-of-life issues. Educational materials may be submitted for review, and a discussion board is available.

International AIDS Society-USA: This not-for-profit continuing medical education organization offers up-to-date information for physicians who are actively involved in the care of people living with HIV/AIDS. Information is disseminated through CME courses around the US, the publication Topics in HIV Medicine, and the development of treatment guidelines.

VII. Professional Associations

American Academy of Hospice and Palliative Medicine: AAHPM is a palliative care physician organization that provides education and clinical practice standards, promotes research, helps with professional development of its members, and advocates for public policy. This is a membership organization, but most areas on the web site are available to the general public. A quarterly newsletter is provided with membership.

  • www.aahpm.org/

  • Phone: 847-375-4712; Fax: 877-734-8671; E-mail: aahpm@aahpm.org

  • Self-training modules for physicians in palliative care, or UNIPACs. CME credit is offered for these modules. Topics include pain management, ethics, psychosocial issues, HIV care, and pediatrics. www.aahpm.org/unipac's.htm. Modules can be ordered through Kendall/Hunt Customer Service, Kendall/Hunt Publishing Company, 4050 Westmark Drive, P.O. Box 1840, Dubuque, Iowa 52004-1840; www.kendallhunt.com; Phone: 1-800-228-0810 (US) or 1-319-589-1000 (International); Fax: 1-800-772-9165 (US) or 1-319-589-1046 (International)

American Academy of Pain Medicine: AAPM promotes quality of care for patients with pain through research, education, and advocacy. Career opportunities, CME, and provider resources are available on the site.

American Board of Hospice and Palliative Medicine: ABHPM supports high quality palliative care for patients with advanced, progressive illness by offering a certification exam in hospice and palliative medicine for physicians. ABHPM also has a newsletter and educational resources on-line.

American Psychiatric Association AIDS Resource Center: The Center offers "education and training, resources, information, policies, and a network of clinical expertise on the mental health dimensions of HIV/AIDS."

The Association of Nurses in AIDS Care: ANAC states that it is a nonprofit professional nursing organization committed to fostering the professional development of nurses involved in the delivery of health care to persons infected or affected by HIV. In addition, ANAC promotes the health, welfare, and rights of all HIV infected persons. ANAC offers a certification exam for HIV/AIDS nurses and an annual conference. With membership, one receives a subscription to Journal of ANAC along with other benefits.

Hospice and Palliative Nurses Association: The HPNA provides information and resources, promotes specializing and furthering professional development in palliative and hospice care, and facilitates the exchange of ideas in the field. This is a membership organization.

  • www.hpna.org/

  • National Board for Certification of Hospice and Palliative Nurses: There is a certification exam for nurses wishing to specialize in hospice and palliative nursing. www.hpna.org/NBCHPN/

  • Phone: 412-361-2470; Fax: 412-361-2425; E-mail: hpna@hpna.org

International Association of Physicians in AIDS Care: This comprehensive web site has clinical management updates, conference coverage, provider resources and health policy information. The organization also has a publication, International Association of Physicians in AIDS Care Monthly.

  • www.iapac.org/index.html

  • iapac@iapac.org

  • Phone: 312-795-4930

  • Fax: 312-795-4938

International Association for the Study of Pain

Physician Assistant AIDS Network: This not-for-profit organization promotes "networking, continuing medical education, and symposia for PAs working in HIV/AIDS care." On the web site are a newsletter, conference information, HIV/AIDS treatment information, and a discussion board.

VIII. Psychosocial Care

After You Say Goodbye: When Someone You Love Dies of AIDS, Paul Kent Froman.

  • Chronicle Books: 1992, ISBN 0-8118-0088-1

  • This book can be helpful to individuals, counselors, and clinicians.

American Psychological Association Office on AIDS: This office provides information, training, and technical assistance on various topics in HIV/AIDS and psychological health. Topics include coping, mental health services, public policy, graduate education, and ethics.

Bereavement: A Magazine of Hope and Healing: This magazine is available for free on-line, or by mail with a paid subscription. The magazine offers stories, poems, and articles from bereaved persons, as well as articles from professionals from the field of grief intervention. Additionally, the web site offers online support groups and memorials, and printed resources on topics such as bereavement in the workplace, anticipatory grief, and information for children.

Coping With Grief, San Francisco AIDS Foundation: This informational brochure is directed to those dealing with loss and bereavement. It discusses the process of grieving and healing.

  • www.sfaf.org/aboutaids/grief.html

Dying Well: Provides resources and referrals to organizations to empower persons with life threatening illness and their families to live fully.

  • www.dyingwell.org

  • Missoula-Vitas Quality of Life Index: www.dyingwell.org/MVQOLI.htm

  • Related book: Dying Well: The Prospect for Growth at the End-of-Life, Ira Byock, M.D., published by Putnam/Riverhead. GriefNet is a web site that offers persons dealing with grief, death, and loss a support groups and resources.

  • www.rivendell.org/

Mental Health Care for People Living With or Affected With HIV/AIDS: A Practical Guide: Substance Abuse and Mental Health Services Administration (SAMHSA) monograph, 1999

  • www.mentalhealth.org/publications/allpubs/KEN00-0081/default.asp

Mini Mental State Examination (MMSE): One of the most frequently used neuropsychological tests in the clinical evaluation of mental status changes.

  • The full instrument is available from Psychological Assessment Resources at 1-800-331-8378.

National Clearinghouse for Alcohol and Drug Information (NCADI): Numerous documents on diagnosis and treatment of substance abuse, including specific to people living with HIV and vulnerable populations.

  • www.health.org/

  • HIV/AIDS information: www.health.org/catalog/catalog.asp?pop=9

  • Phone: 800-729-6686, TDD 800-487-4889

Recovering from the Loss of a Loved One to AIDS: Help for Surviving Family, Friends, and Lovers Who Grieve, Katherine Fair Donnelly.

  • Fawcett Books, 1995 (out of print), ISBN: 0595168604

IX. HIV/AIDS Clinical Care

Aegis: A comprehensive web site of HIV information and resources. The site includes clinical and treatment information, as well as a large searchable database for information and reports on topics such as palliative care, legal issues, and hospice. A very good source of up-to-date information from the mainstream press, professional journals, government, and legal and legislative sources.

A Guide to the Clinical Care of Women with HIV, Jean R Anderson, Editor.

  • Health Resources and Services Administration, 2001 edition

  • Available online at www.hab.hrsa.gov/ , then click on the link for the Women's Guide. Or order by e-mail: womencare@hrsa.gov; by fax to the attention of "Womencare": 301-443-0791; or write to: Womencare, Parklawn Building, Room 11A-33, 5600 Fishers Lane, Rockville, Maryland 20857, USA

AIDS info: This web site provides all the DHHS HIV treatment guidelines, updated as new data become available.

HIVDent: This site promotes high quality oral health care services to people living with HIV/AIDS. It include information on the oral manifestations of HIV/AIDS with a large library of photographs. Educational materials are available for providers and people living with HIV/AIDS.

HIV InSite: From the University of California San Francisco, this comprehensive web site offers information on the medical aspects of HIV/AIDS, prevention, policy, and international issues. The AIDS Knowledge Base is a manual on HIV/AIDS treatment.

HRSA HIV/AIDS Bureau: The web site of the Federal agency that administers the Ryan White CARE Act funding (Health Resources and Services Administration, or HRSA). There are some links to palliative care information on this site. Additionally, the site has information on getting care and HIV/AIDS drugs, grant applications, and resources.

  • www.hab.hrsa.gov/

  • Click on "tools to help CARE Act programs" for a listing of resources on numerous topics, including palliative care.

  • Click on Evaluation/SPNS (www.hab.hrsa.gov/evaluation.html) for information on the Special Projects of National Significance. Click on SPNS initiatives for a listing of the projects, including demonstration projects in palliative care.

  • www.ask.hrsa.gov for an information distribution center, or call 1-888-ASK-HRSA (275-4772)

Johns Hopkins AIDS Service: A comprehensive web site of HIV information and resources, including publications, medical education, provider and consumer interactive forums for seeking answers to questions, and resources and information on managed care, epidemiology, prevention, and treatment.

  • www.hopkins-aids.edu/

  • Click on publications for the manual Medical Management of HIV by John G. Bartlett, M.D., or call 800-787-1254 to order the manual.

  • Click on publications for the newsletter Hopkins HIV Report, or write to The Hopkins HIV Report, PO Box 5252, Baltimore, M.D. 21224, Attn: Distribution, for a free subscription of the newsletter.

Medscape HIV/AIDS Page: Offers HIV/AIDS resources in CME, clinical updates, clinical management, conference coverage.

  • www.medscape.com/Home/Topics/AIDS/AIDS.html

  • Antiretroviral Reference Guide: This guide contains information on antiretroviral summary tables, drug-drug combinations, antiretroviral resistance mutations, methadone/antiretroviral drug interactions, and TB medication/antiretroviral drug interactions. It can be viewed as an HTML file, downloaded in Adobe Acrobat format, or downloaded for Palm Pilot. This file can be found under the "Clinical Updates" section of the web site above or at www.medscape.com/Medscape/HIV/TreatmentUpdate/1998/tu01/eng/pnt-eng.tu01.html.

National HIV/AIDS Clinician Consultation Center: This service is run by the University of California San Francisco with the AIDS Education and Training Centers (AETCs) from HRSA. Technical assistance is included on the site along with the help lines for telephone consultations listed below.

  • www.ucsf.edu/hivcntr/

  • Clinician Warmline for clinical consultations: 1-800-933-3413, 6:00 a.m.-5:00 p.m., Mon.-Fri.

  • Post-exposure Prophylaxis (PEP) Hotline: 1-888-448-4911, 24 hours a day, 7 days a week

NIAID Database for Anti-HIV Compounds: This comprehensive database offers information on anti-HIV drugs, including viral life cycle, chemical structures, resistance, and in-vitro activity.

  • www.niaid.nih.gov/daids/dtpdb/

University of Liverpool Drug Interactions Web site: This web site offers up-do-date and interactive information about drug interactions.

X. General HIV/AIDS Consumer Resources

The Body: This web site is an information source on HIV/AIDS for patients. It aims to improve quality of life and foster a community in HIV/AIDS patients.

National AIDS Hotline: A service sponsored by the Centers for Disease Control and Prevention, for general questions about HIV and AIDS.

  • Phone: 1-800-CDC-INFO, TTY 1-888-232-6348

National Association of People With AIDS: NAPWA "advocates on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS." The organization offers publications, programs, education, and resources for people living with HIV and AIDS.

  • www.napwa.org/

  • Phone: 202-898-0414; Fax: 202-898-0435; E-mail: napwa@napwa.org

Project Inform: A national project targeting consumers with up-to-date treatment information, strategies for adherence, and other tools for people living with HIV.

  • www.projinf.org/

  • National HIV/AIDS Treatment Hotline: 1-800-822-7422 (toll-free in the United States) or 415-558-9051 (in the San Francisco Bay Area or internationally). Hotline hours are Monday-Friday, 9 a.m. - 5 p.m. and Saturday, 10 a.m. - 4 p.m. (Pacific Time).

XI. Cultural Competency

Assuring Cultural Competence in Health Care: Recommendations for National Standards and an Outcomes-Focused Research Agenda: This project makes recommendations for national standards for culturally and linguistically appropriate services in health care. From the Office of Minority Health in the Department of Health and Human Services; also available in Spanish.

  • www.omhrc.gov/clas/

Cultural Competence: A Journey: This publication is sponsored through the Health Resources and Services Administration's Bureau of Primary Health Care. It describes the domains of cultural competency and the stories and experiences of several community programs in this topic area.

Diversity Rx: Promotes cultural competency in health care for minority, immigrant, and ethnically diverse communities. The site discusses political, medical, legal, and social issues behind cultural competency, and offers an electronic newsletter, a Medical Interpretation Resources and References Guide, and a Multicultural Health Best Practices report.

Palliative Care Association of South Australia: An advocacy group for palliative and hospice care in South Australia. Offers information for consumers and clinicians.

  • www.pallcare.asn.au/

  • Multicultural Palliative Care Guidelines (geared towards clinicians), available in twenty-one languages: www.pallcare.asn.au/mc/index.html

  • Palliative care informational brochure (geared towards consumers), available in twentyone languages: www.pallcare.asn.au/difflang.htm

  • Phone: +61 8 8291 4137; Fax: +61 8 8291 4122; E-mail: pcare@pallcare.asn.au

National Center for Cultural Competence: NCCC aims to increase the capacity of health care programs to design, implement, and evaluate culturally competent service systems. The center provides training and technical assistance, and exchanges and disseminates information on cultural competence. It is sponsored by Georgetown University and HRSA.

  • www.gucdc.georgetown.edu/nccc/

  • Phone: 1-800-788-2066 or 202-687-5387; Fax: 202-687-8899;TDD 202-687-5503; E-mail: cultural@georgetown.edu

XII. Policy/Advocacy

Americans for Better Care for the Dying: Their stated goals are to 1) build momentum for reform, 2) explore new methods and systems for delivering care, and 3) shape public policy through evidence-based understanding. Information on policy, news updates, a newsletter, and resources are available.

Project on Death in America: The mission of this organization is to "understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy." Information on model programs, grants, and policy is available on the site.

XIII. International Focus

Association François-Xavier Bagnoud: AFXB is an international organization that sponsors research, programs, and field work in areas such as palliative care, care for AIDS orphans in Africa, humanitarian rights, and pediatric HIV/AIDS care. The work in palliative care involves services, research, and training.

  • www.fxb.org/palliative/index.html

  • Phone: (Switzerland) +41-217-961-302; (US) 617-432-3511, E-mail: info@afxb.org

Canadian Palliative Care Association: The CPCA 's consensus document on Standardized Principles and Practice of Palliative Care presents guidelines for national committees to follow in developing standards; it is a clear framework for the process, with sample goals, objectives, essential steps, accompanying policies and procedures, and desirable outcomes.

CDC Global AIDS Program Technical Strategies -- Palliative Care: This is a guide from the CDC that offers a strategic plan on implementing global AIDS strategies. The plan also discusses some best practices and global models of palliative care in HIV/AIDS.

Crossing Borders: Migration, Ethnicity and AIDS: Mary Haour-Knipe and Richard Rector, Editors.

  • Bristol, PA: Taylor & Francis Inc, 1996.

  • ISBN: 0 7484 03779, 07484 03787 pbk

The Enhancing Care Initiative: ECI is a collaborative effort of the Harvard AIDS Institute with AIDS Care Teams in Brazil, Puerto Rico, Senegal, South Africa and Thailand. The focus of this initiative is to implement continuity of care programs that provide care in ten areas. These include prevention approaches with HIV counseling and testing, basic medical care services, and community-based care with care for the dying and care for caregivers.

Global Health Council: The mission is "to mobilize effective action by advocating for needed policies and resources, building networks and alliances among those working to improve health, and communicating innovative ideas, knowledge and best practices in the health field." One of their major health topics is HIV/AIDS. Global news updates, newsletters, and a resource exchange are some of what is offered on the web site.

  • www.globalhealth.org/

  • E-mail: ghc@globalhealth.org

  • For information on HIV/AIDS and advocacy, contact the Washington office at 1701 K Street, NW, Suite 600, Washington, DC, 20006-1503. Phone: 202-833-5900, Fax 202-833-0075

An Introduction to the Integrated Community-Based Home Care Model (I.C.H.C.). Videotape. Hospice Association of South Africa, 2001.

Hospice Uganda: This hospice is a model hospice under the Hospice Africa program, which was initiated to promote the development of hospice in African countries that have not yet had palliative medicine services. Hospice Uganda has been offering services in palliative care for cancer and AIDS since 1993. In addition to the provision of comprehensive palliative care services, Hospice Uganda provides education in palliative medicine, and encourages the initiation of hospice in other African countries.

  • www.hospice-africa.merseyside.org/hospice.html

  • Mailing address: Hospice Uganda, PO Box 7757, Kampala, Uganda

  • Phone: 256-41-266867 or 256-41-269445; Fax: 256-41-26788; E-mail: hospiceu@africaonline.co.ug

HIV and Immigrants: A Manual for AIDS Service Providers: Produced by the National Immigration Project of the National Lawyers Guild, this manual provides a comprehensive and detailed presentation of issues related to immigrants and HIV. The manual is available free of charge from the San Francisco AIDS Foundation, P.O. Box 426182, San Francisco, CA 94142.

  • Phone: 415-487-3080; Fax: 415-487-3089.

  • www.sfaf.org/policy/immigration/appendix_c.html

The Immigration and Refugee Services of America (IRSA) Medical Case Management Program: This program provides technical assistance to organizations that are resettling refugees with special health care needs. In the current phase of the program, IRSA is working with national and community based resettlement agencies to enhance organizational capacity to provide care for HIV-positive clients and to create partnerships with AIDS service providers.

King's College Department of Palliative Care and Policy/St. Christopher's Hospice: Located in London, England, this program provides a model for integrated palliative care services. Ongoing research and evaluation of palliative care services takes place at the university along side education and training of professionals.

  • www.kcl.ac.uk/depsta/palliative/index.html

  • Phone: +44 0 20 7346 3995; Fax: +44 0 20 7346 3864

  • There is also a Hospice Information Service offered through St. Christopher's Hospice. A newsletter, fact sheets, and an international hospice locator service is available through the HIS.

  • www.hospiceinformation.info, or Phone: + 44 0 20 8778 9252; Fax: + 44 0 20 8776 9345; E-mail: info@his2.freeserve.co.uk

Mildmay International Centre in Uganda: This centre near Kampala, Uganda "effectively combines a clinical outpatient service with a study centre to train and develop people in HIV/AIDS care and management." Description of the clinical services and training courses are offered on the web site.

National Immigration Project of the National Lawyers Guild: Provides contacts to local immigration advocates and a legal training packet designed for immigration practitioners as well as advice and information to AIDS service providers.

Palliative Care for HIV/AIDS in Less Developed Countries, Linda Sanei, 1998

  • Discussion paper number 3 from the series Discussion Papers on HIV/AIDS Care and Support, discusses ethical issues, clinical components, alternative therapies, challenges, and prevention.

  • To order, contact The Synergy Project, 1101 Vermont Avenue, NW, Ste 900, Washington, DC 20005; Phone: 202-842-2939; Fax: 202-842-7646; www.synergyaids.com

XIV. Complementary and Alternative Therapies

Bastyr University: Bastyr offers academic training and research in the natural health sciences. Their offerings include fields such as nutrition, acupuncture, and herbal sciences. The university has an AIDS Research Center which is funded under grants from the National Institute of Allergy and Infectious Diseases (NIAID) and the National Center for Complementary and Alternative Medicine (NCCAM).

National Center for Complementary and Alternative Therapies: This center, part of the National Institutes for Health, studies complementary and alternative healing through scientific research. They also provide training for researchers and disseminate information about complementary and alternative medicines.

  • www.nccam.nih.gov/

  • Phone: 1-888-644-6226 or 301-231-7537, ext. 5 (outside the U.S.); TDD: 1-888-644-6226; Fax: 301-495-4957

Click here to see a table listing (PDF) of internet sites on palliative care and related topics, alphabetically by name of website or organization, with primary audiences and topic areas, such as pain management, provider education, and respite.