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

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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 26: Resources• Innovations in End-of-Life Care (on-line peer-reviewed journal):www2.edc.org/lastacts/• Consumer/Family Resources for End-of-Life Care brochure: www.lastacts.org:80/files/26 picaspublications/familyresources.pdfThe National Hospice and Palliative Care Organization: The organization’s activities surroundimproving 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 andtheir loved ones. Consumer brochures on hospice care, professional education conferences, ahospice locator, hospice and palliative care statistics, and other resources are offered on theweb 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.orgOn Our Own Terms: Moyers on Dying: Bill Moyers hosted this four-part series for the PublicBroadcasting 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 ofend-of-life care. The web site offers resources on end-of-life tools, financial planning, options inclinical care, and psychosocial issues.• www.pbs.org/wnet/onourownterms/• Video tapes of the series may be ordered by callingFilms of the Humanities at 1-800-257-5126The Oxford Textbook of Palliative Medicine, Derek Doyle, Geoffrey Hanks, Neil MacDonald,Editors.• Published by Oxford University Press, 2 nd Edition: 1999, ISBN: 0192630571Palliative Care for People with AIDS, Ruth Sims and Veronica Moss.• Singular Publishing, 2 nd edition: 1995, ISBN 1565933591Partnership for Caring, Inc.: This non-profit organization partners individuals with organizationsto 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.• www.partnershipforcaring.org/HomePage/• Phone: 202-296-8071; Fax:202-296-8352; E-mail pfc@partnershipforcaring.org• Information Hotline for end-of-life issues: 800-989-9455 (option 3)518U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 26: ResourcesPromoting Excellence in End-of-Life Care: Innovative healthcare models and demonstrationprojects in end-of-life care are highlighted and offered technical assistance through this program.Projects are supported on various populations, diseases, and clinical settings. Evaluationtools are 26 available picas on-line.• www.promotingexcellence.org/• Phone: 406-243-6601; Fax: 406-243-6633; E-mail: excell@selway.umt.eduSymptom Management Algorithms: A Handbook for Palliative Care,Linda Wrede-Seaman, MD.• Published by Intellicard, 2 nd edition: 1999, ISBN: 188841107-4• Decision algorithms for assessment and management of painand common symptoms in terminal illnessSymptom Relief in Terminal Care, Gary A. Johnson, MD.• Includes a chapter on symptom management in HIV.• The last edition (4 th ) 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 tobe notified of when the new book will be in print, members.aol.com/scafem/; Phone707-527-6223; E-mail: scafem@aol.com, mailing address: 3324 Chanate Road, SantaRosa, CA 95404Toolkit of Instruments to Measure Care at the End-of-Life: This site offers “an authoritativebibliography of instruments to measure the quality of care and quality of life for dying patientsand their families.” The toolkit works on measuring the needs of patients and families withpatient-focused, family-centered survey instruments.• www.chcr.brown.edu/pcoc/toolkit.htmUNAIDS 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 palliativecare, discusses issues specific to HIV in palliative care, reviews what palliative care servicesare necessary for people living with HIV/AIDS, and makes recommendations for the future ofpalliative 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 mailto UNAIDS Information Centre, 20 Avenue Appia, 1211 Geneva 27, SwitzerlandII. HOSPICEHospice Foundation of America: HFA is a “nonprofit organization that promotes hospice careand 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 electronicnewsletter, 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.XXVIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 519
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DedicationA Clinical Guide to Suppo
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Lynn A Jansen, RN, PhDAssistant Res
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TABLE OF CONTENTSPart IChapter 1Cha
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IChapter 1.26 picasHIV and Palliati
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IA Clinical Guide to Supportive and
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A Clinical Guide to Supportive and
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IIIChapter 3.Assessment of Physical
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Chapter 6.26 picasPulmonary Symptom
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Chapter 8.26 picasOral ProblemsDavi
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Chapter 9.26 picasDermatologic Prob
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Chapter 10.26 picasPsychiatric Prob
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Chapter 11.26 picas Substance Use P
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Chapter 14.26 picasCulture and Care
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Chapter 15.26 picasSpecial Populati
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Chapter 17.26 picasEthical IssuesLy
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Chapter 18.26 picasLegal and Financ
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Chapter 19.Palliative 26 picas Care
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DRUGS AND THERAPIES INDEXNOTES: Ent
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The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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