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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS
Chapter 26. Resources

By Magda Barini-García, M.D., M.P.H. and Demia L. Sundra, M.P.H.

November 30, 1999

Introduction

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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..

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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

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

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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