This page includes palliative care resources that have been vetted by members of the Palliative Care Initiative (PallCI). Click the sections below for the full set of resources.
- Adler, E., Goldfinger, J., Kalman, J., Park, M., & Meier, D. (2009). Palliative care in the treatment of advanced heart failure. Circulation, 120, 2597 – 2606.
- Curtis, J., Engelberg, R., Wenrich, M., Nielsen, E., Shannon, S., Treece, P., et al. (2002). Studying communication about end-of-life care during the ICU family conference. Journal of Critical Care, 17 (3), 147 – 160.
- El-Jawahri, A., Greer, J., & Temel, J. (2011). Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. The Journal of Supportive Oncology, 9(3), 87 - 94. Retrieved from http://www.supportiveoncology.net/jso/journal/articles/0903087.pdf
- Eti, S. (2011). Palliative care: An evolving field in medicine. Primary Care: Clinics in Office Practice, 38 (2), 159 – 171.
- Gardner, D.B., (2012) Quality in Life and Death: Can We Have the Conversations? Nursing Economics, The Journal for Health Care Leaders http://www.nursingeconomics.net/necfiles/specialissue/2012/Gardner.pdf
- Goldsmith, B., Dietrich, J., Du, Q., & Morrison, R. (2008). Variability in access to hospital palliative care in the United States. Journal of Palliative Medicine, 11 (8), 1094 – 1102.
- Jacobsen, J., Robinson, E., Jackson, V., Meigs, J., & Billings, J.A. (2011). Development of a cognitive model for advance care planning discussions: Results from a quality improvement initiative. Journal of Palliative Medicine, 14 (3), 331 – 336.
- Ko, D., Perez-Cruz, P., & Blinderman, C. (2011). Ethical issues in palliative care. Primary Care: Clinics in Office Practice, 38 (2), 183 – 193.
- Macauley, R., & Billings, J.A. (2011). Teaching small groups in palliative care. Journal of Palliative Medicine, 14 (1), 91 – 95.
- Moody, K., Siegel, L., Scharbach, K., Cunningham, L., & Cantor, R. M. (2011). Pediatric palliative care. Primary Care: Clinics in Office Practice, 38 (2), 327 – 361.
- Morrison, R., Penrod, J., Cassel. B., Caust-Ellenbogen, M., Litke, A., Spragens, L., & Meier, D. (2008). Cost savings associated with U.S. hospital palliative care consultation programs. Archives of Internal Medicine, 168 (16), 1783 – 1790.
- Peek, C., & Oftedahl, G. (2010). A consensus operational definition of patient-centered medical home (PCMH) also known as Health Care Home: A joint product of the University of Minnesota and the Institute for Clinical Systems Improvement. Bloomington, MN: Institute for Clinical System Improvement.
- Romesberg, T. (2007). Building a case for neonatal palliative care. Neonatal Network, 26 (2), 111 - 115.
- Temel, J., Greer, J., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V., et al. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363 (8), 733 – 742.
- Toce, S., & Collins, M. (2003). The FOOTPRINTS model of pediatric palliative care. Journal of Palliative Medicine, 6 (6), 989 – 1000.
- Weissman, D., & Meier, D. (2009). Center to advance palliative care inpatient unit operational metrics: Consensus recommendations. Journal of Palliative Medicine, 12 (1), 21 – 25.
- Weissman, D., & Meier, D. (2011). Identifying patients in need of a palliative care assessment in the hospital setting: A consensus report from the Center to Advance Palliative Care. Journal of Palliative Medicine, 14 (1), 1 – 7.
- Weissman, D., Morrison, R., & Meier, D. (2010). Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations. Journal of Palliative Medicine, 13 (2), 179 – 184.
- Werb, R. (2011). Palliative care in the treatment of end-stage renal failure. Primary Care: Clinics in Office Practice, 38 (2), 299 – 309.
- Wilder Research. (2009). Integrating best practices into collaborative learning methods for Health Care Home providers. Retrieved from www.health.state.mn.us/healthreform/homes/collaborative/CollaborativeLearningEvaluation.pdf
Associations, Organizations, and Networks
- American Academy of Hospice and Palliative Medicine: http://www.aahpm.org
Resources for medical providers, and Fast Facts
- American Society of Pain Management Nurses: http://www.aspmn.org
- Center to Advance Palliative Care: http://www.capc.org
- Harvard Medical School Center for Palliative Care: http://www.hms.harvard.edu/pallcare/
Offers intensive educational experiences
- Hospice and Palliative Nurses Association: http://www.hpna.org
Resources for nurses
- Institute for Clinical for Clinical Systems Improvement: http://www.icsi.org
Information on MN Rural Palliative Care Initiative with resources developed by participants
- Minnesota Board on Aging: http://www.mnaging.org
Information on caregiving, long term care, and health care directives (including a form for a health care directive)
- Minnesota Department of Health: http://www.health.state.mn.us/divs/fpc/profinfo/advdir.htm
Questions and answers about health care directives in Minnesota
- MN Area Geriatric Education Center: http://www.sph.umn.edu/hpm/coa/MAGEC/index.html
- National Hospice and Palliative Care Organization: http://www.nhpco.org
Caring Connections section includes information about Advance Care Planning, Advance Directives, Living Wills (Caregiving, Financial Planning, Grief, Hospice & Palliative Care, Pain, Spiritual Care)
- “It’s about How You LIVE – In Faith Outreach Guide” Information re faith community outreach and partnerships. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3386
- “Offering Spiritual Support for Family and Friends “ (Brochure) http://www.caringinfo.org/i4a/pages/index.cfm
- Palliative Care Learning Center: http://www.capc.org/palliative-care-leadership-initiative/overview
- Palliative Care Video: http://www.palliativecarevideo.com (to purchase: http://www.amazon.com/Palliative-Care-Improving-Quality-Illnesses/dp/B003JBI4LY/ref=sr_1_1?s=dvd&ie=UTF8&qid=1299708160&sr=1-1)
Twelve-minute introductory video for patients/family members/medical providers
- Social Work Hospice & Palliative Care Network: http://www.swhpn.org
Resources for social workers working in hospice and palliative care settings
- Stratis Health: http://www.stratishealth.org/expertise/longterm/palliative.html
MN’s Medicare Quality Improvement Organization – special focus on rural palliative care
- Pallimed: A hospice & palliative medicine blog
Provides palliative drugs and prognosis link
- The End-of-Life Nursing Education Consortium (ELNEC): http://www.aacn.nche.edu/elnec/ and http://www.aacn.nche.edu/elnec/factsheet.htm
This project is a national education initiative to improve palliative care. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in palliative care so they can teach this essential information to nursing students and practicing nurses.
- EPEC™-O Education in Palliative and End-of-Life Care for Oncology: http://www.cancer.gov/cancertopics/cancerlibrary/epeco
A comprehensive multimedia curriculum for health professionals caring for persons with cancer
- Iowa Geriatric Education Center: http://www.healthcare.uiowa.edu/igec/resources-educators-professionals/geriasims/acadMenu.asp
Offers “virtual patient” geriatric simulations
- Medical College of Wisconsin End of Life Palliative Education Resource Center: http://www.eperc.mcw.edu/eperc
Site includes Fast Facts http://www.eperc.mcw.edu/EPERC/FastFactsIndex
- Physician Orders for Life-Sustaining Treatment Paradigm (POLST): http://www.ohsu.edu/polst
- Stanford Faculty Development Center: http://www.growthhouse.org/stanford/modules.html
End of Life curriculum modules
- International Journal of Palliative Nursing
- Journal of Hospice and Palliative Nursing
- Journal of Pain and Symptom Management
- Journal of Palliative Medicine
- Davis, D. (1996). Empty cradle, broken heart. Golden, CO: Fulcrum Publishing.
- Genova, L. (2009). Still Alice. New York, NY: Pocket Books.
- Fadiman, A. (1997). The spirit catches you and you fall down: A Hmong child, her American doctors, and the collison of two cultures. New York, NY: Farrar, Straus, and Giroux.
- Hanson, W. (1997). The next place. Golden Valley, MN: Walden House Press.
- Hedderman, L. (2011). Preparing your children for goodbye: A guidebook for dying parents. San Francisco, CA: Growth House.
- Huntley, T. (2002). Helping children grieve. Minneapolis, MN: Augsburg Books.
- James, J., & Friedman, R. (2001). When children grieve. New York: Harper Collins.
- Keeley, M. & Yingling, J. (2007) Final Conversations: Helping the Living and the Dying Talk to Each Other. Vanderwyk & Burnham
- Kroen, W. (1996). Helping children cope with the loss of a loved one. Minneapolis, MN: Free Spirit Publishing.
- Kuebelback, A. (2003). Waiting with Gabriel. Chicago, IL: Loyola Press.
- Latta, S. (2003). Dealing with the loss of a loved one. Philadelphia: Chelsea House.
- Levang, E. (1998). When men grieve. Minneapolis, MN: Fairview Press.
- Lynn, J. & Harrold, J. (2001). Handbook for mortals: Guidance for people facing serious illness. New York: Oxford University Press.
- Pausch, R., & Zaslow, J. (2008). The last lecture. New York: Hyperion.
- Richmond, M. (2000). The gift of a memory. Minneapolis, MN: Richmond Studios.
- Schaefer, D., & Lyons, C. (2001). How do we tell the children? A step-by-step guide for helping children two to teen cope when someone dies. New York: Newmarket Press.
- Worden, J. (1996). Children and grief. New York: Guilford Press.
Resources for Children
- Brown, L., & Brown, M. (1996). When dinosaurs die. New York: Little, Brown, and Co.
- Buscagalia, L. (1982). The fall of Freddie the leaf: A story of life for all ages. Slack Inc.
- Gaes, J. (1987). My book for kids with cansur: A child’s autobiography of hope. Aberdeen, S.D.: Melius & Peterson Publishing.
- Heegaard, M. (2001). Saying goodbye to your pet. Minneapolis, MN: Fairview Press.
- Mellonie, B., & Ingpen, R. (1983). Lifetimes. New York: Bantam Books.
- Rylant, C. (1997). Cat heaven. New York: Blue Sky Press.
- Rylant, C. (1995). Dog heaven. New York: Blue Sky Press.
- Shriver, M. (1999). What’s heaven? New York: St. Martin’s Press.
- Silverman, J. (1999). Help me say goodbye. Minneapolis, MN: Fairview Press.
- Stickney, D. (1997). Water bugs and dragonflies. Cleveland: The Pilgrim Press.
Texts and Handbooks
- Armstrong-Dailey, A., & Zarbock, S. (2001). Hospice care for children. New York: Oxford University Press.
- Carter, B., & Levetown, M. (2004). Palliative care for infants, children and adolescents. Baltimore, MD: The Johns Hopkins University Press.
- Ferrell, B., & Coyle, N. (2008). The nature of suffering and the goals of nursing. New York: Oxford University Press.
- Ferrell, B., & Coyle, N. (2010). Oxford textbook of palliative nursing. New York, NY: Oxford University Press.
- Goldman, A., Hain, R., & Liben, S. (2006). Oxford textbook of palliative care for children. New York, NY: Oxford University Press
- Hanks, G., Cherny, N., & Christakis, N. (2009). Oxford textbook of palliative medicine. New York, NY: Oxford University Press
- Institute for Clinical Health Systems Improvement (ICSI). End of Life Care: 6 Leadership Action. (Reprint from Healthcare Executive, American College of Healthcare Executives. January/February 2011.
- Institute of Medicine. (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC. The National Academies Press.
- Kubler-Ross, E. (1969). On death and dying. New York, NY: Simon and Schuster Press.
- Kubler-Ross, E. (1983). On children and death. New York, NY: Touchstone.
- Matzo, M. & Sherman, D. (2006). Palliative care nursing. New York, NY: Springer.
- McPhee, S., Winker, M., Rabow, M., Pantilat, S., & Markowitz, A. (2011). Care at the close of life: Evidence and experience. New York, NY: McGraw Hill.
- Nelson, W. (2009). Handbook for rural health care ethics: A practical guide for professionals. Lebanon, NH: University Press of New England.
- Palliative Pharmacy Care, by Jennifer Strickland. Reference with case studies.
- Puchalski, C., & Ferrell, B. (2010). Making health care whole. West Conshohocken, PA: Templeton Press.
- Quill, T. (2010). Primer workbook. Glenview, IL: American Academy of Hospice and Palliative Medicine.
- Storey, P., & Knight, C. Hospice/palliative care training for physicians: The Unipac book series. New Rochelle, NY: Mary Ann Liebert Publishers.
- The Hospice and Palliative Medicine Approach to Life-Limiting Illness
- Alleviating Psychological and Spiritual Pain in Patients with Life-Limiting Illness
- Assessment and Treatment of Physical Pain Associated with Life-Limiting Illness
- Management of Selected Nonpain Symptoms of Life-Limiting Illness
- Communication and the Hospice and Palliative Physician’s Role on the Interdisciplinary Team
- Ethical and Legal Dimensions of Treating Life-Limiting Illness
- The Hospice and Palliative Medicine Approach to Caring for Patients with HIV/AIDs
- The Hospice and Palliative Medicine approach to Caring for Pediatric Patients.
- The Hospice and Palliative Medicine Approach to Selected Chronic Illnesses: Dementia, COPD, and CHF.
- Wrede-Seaman, L. (2005). Pediatric pain and symptom management algorithms for palliative care. Seattle, WA: Intellicard.
- Zerwekh, J. (2006). Nursing care at the end of life: Palliative care for patients and families. Philadelphia: F.A. Davis.
- American Institute for Research, TeamSTEPPS Teamwork Perception Questionnaire (T-TPQ) Manual, June 2010.
- The Unbroken Circle: A Toolkit for Congregations around Illness, End-of-Life and Grief (book), James Brooks “Toolkit” for clergy, faith community nurses and congregational lay leaders.
- The PAL-MED CONNECT® Hotline 1-877-PAL-MED4 (1-877-725-6334) provides FREE information, education, and resources to healthcare professionals regarding palliative care solutions. The palliative medicine hotline is accessible 24 hours a day, 7 days a week http://www.palmedconnect.org
- Health Resources and Services Administration, the Josiah Macy Jr. Foundation, the Robert Wood Johnson Foundation, and the ABIM Foundation in partnership with IPEC (2011). Proceedings from Team-Based Competencies: Building a Shared Foundation for Education and Clinical Practice. Washington, D.C. http://www.macyfoundation.org/publications/publication/team-based-competencies-building-a-shared-foundation-for-education-and-clin
Provides an action plan for team-based competencies and interprofessional education
- Interprofessional Education Collaborative Expert Panel. (2011).
Core competencies for interprofessional collaborative practice: Report of an expert panel. Washington, D.C.: Interprofessional Education Collaborative. http://www.abimfoundation.org/News/ABIM-Foundation-News/2011/Health%20Educators-Foundations-Announce-Competencies-Strategies-for-Interprofessional-Education.aspx
Provides competencies for interprofessional education for health professions
- National Institute of Nursing Research (NINR), Palliative Care The Relief You Need When You’re Experiencing the Symptoms of Serious Illness, May 2011. A brochure for patients that highlights what palliative care is, who it benefits, and how it works, available from the National Institutes of Health in either an English or Spanish version.
- American Academy of Hospice and Palliative Medicine: http://www.aahpm.org
- Cancer Pain Management in Children: http://www.childcancerpain.org
- Centers for Disease Control - Advanced Care Planning: An Introduction for Public Health and Aging Services Professionals.
- Center to Advance Palliative Care: http://www.capc.org
Quality Care during Advanced Illness: What do Patients Want That Works? Recording of Diane Meier, Director, Center to Advance Palliative Care, October 8, 2009 WIHI, Institute for Healthcare Improvement
- Children’s Hospice International: http://www.chionline.org
- Children’s Project on Palliative/Hospice Services (ChiPPS) by the National Hospice and Palliative Care Organization: http://www.nhpco.org
- City of Hope, Pain, and Palliative Care Resource Center: http://www.cityofhope.org
- Compassion Books: http://www.compassionbooks.com
- Dying Well: http://www.dyingwell.org
Resources for people facing life-limiting illness and their families. Articles, books, other resources, and links related to end of life care and issues.
- End of Life Care for Children: http://www.childendoflifecare.org
- End of Life/Palliative Education Resource Center: http://www.eperc.mcw.edu
- Ethical Wills: http://www.ethicalwill.com
Books and other materials regarding writing ethical will. Local workshops are listed.
- Harvard Medical School Center for Palliative Care: http://www.hms.harvard.edu/pallcare
- Hospicenet: http://www.hospicenet.org
Information about palliative care, including what it is and how to obtain it
- Institute for Spirituality and Health: http://www.gwish.org
Resources for supporting and evaluating spiritual health
- Last Acts/Robert Wood Johnson Foundation: http://www.lastacts.org
This project ended in 2005 but there is excellent information available on the site on topics including caregiving, pain, death of children, and decision-making
- National Consensus Project: http://www.nationalconsensusproject.org
- National Palliative Care Research Center: http://www.npcrc.org
- Opioid Conversion Tool: http://www.globalrph.com/narcotic.cgi
- Palliative Drugs: http://www.palliativedrugs.com
Free online resource
- Perinatal Hospice sites:
- Robert Wood Johnson Foundation: http://www.rwjf.org/pr/topic.jsp?topicid=1194
Provides publications and research about End of Life and Palliative Care
- Social Work Hospice and Palliative Care Network: http://www.swhpn.org
- The Initiative for Pediatric Palliative Care: http://www.ippcweb.org
- World Health Organization: http://www.who.int