III. Palliative Care/End-of-Life/Bereavement
This section includes book order forms, curriculum materials from a home care
palliative education project, instruments used in end-of-life care, course
syllabus on End-of-Life Care, and position statements from
professional organizations. Additional information on other resource centers on
end-of-life care and information on educational programs such as the End-of-Life
Nursing Education Consortium (ELNEC) is also available.
City of Hope Publications
Grant, M., Wiencek, C., Virani, R., Uman, G., Munevar, C.,
Malloy, P., & Ferrell, B. (2013).
End-of-life care education
in acute and critical care:
The California ELNEC project. American Association
of Critical-Care Nurses, 24(2), 121-128.
Otis-Green, S., Wakabayashi, M. T., Morgan, R.,
Hakim, A., Ferrell, B., Sun, V.,
Yang, E. & Grant, M. (2013).
Opportunities for Women with Advanced Ovarian Cancer Associated
with Intraperitoneal Chemotherapy. Journal of
Palliative Medicine, 16(1), 44-53. DOI:
CARES: An acronym organized
tool for the care of the dying. Journal of Hospice
& Palliative Nursing, 15(3), 147-153. DOI:
Otis-Green, S., Yang, E., &
Lynne, L. (2103).
ACE Project – Advocating for clinical
excellence: Creating change in the delivery of palliative care.
Omega, 67 (1-2), 5-19.
5. Otis-Green, S. (2013).
Editorial: Changing the
change agents through palliative care educational for
psycho-oncology professionals. Omega, 67(1-2),
6. Cooke, L., Grant, M., Gemmill, R. (2012).
Discharge needs of
allogeneic transplantation recipients. Clinical
Journal of Oncology Nursing, 16(4), E142-E149. DOI:
Williams, A. C., Grant, M., Tiep,
B., & Hayter, J. (2012).
Dyspnea management in early-stage lung cancer. Journal of
Hospice & Palliative Nursing, 14(5), 332-340. DOI:
C., Grant, M., Koczywas, M., & Dorr-Uyemura, L. A. (2012).
anorexia-cachexia in late-stage lung cancer patients.
Journal of Hospice & Palliative Nursing, 14(6), 397-402. DOI:
9. Ferrell, B. R.
Advancing the psychosocial
care of patients with cancer at life’s end: A global nursing
response. Oncology Nursing Forum, 38(5),
10. Cooke, L. D., Gemmill,
R., & Grant, M. L. (2011).
Creating a palliative
educational session for hematopoietic stem cell translantation
recipients at relapse. Clinical Journal of
Oncology Nursing, 15(4), 411-417. DOI:
11. Ferrell, B. R.,
Koczywas, M., Grannis, F., Harrington, A., (2011).
Palliative care in lung
cancer. Surgical Clinics of North America, 91(2),
12. Paice, J. A.,
Erickson-Hurt, C., Ferrell, B. R., Coyle, N., Coyne, P. J.,
Long. C. O., Mazanec, P., Malloy, P., & Smith, T. J. (2011).
Providing pain and
palliative care education internationally. The
Journal of Supportive Oncology, 9(4), 129-133.
13. Wiencek, C. A., Ferrell, B. R., & Jackson, M. (2011).
The meaning of our work:
Caring for the critically ill patient with cancer.
AACN Advanced Critical Care, 4(22), 397-407. DOI:
14. Ferrell, B. R., Virani,
R., Paice, J. A., Malloy, P., & Dahlin, C. (2010).
Statewide efforts to improve
palliative care in critical care settings.
Critical Care Nurse, 30(6), 40-45. DOI: 10.4037/ccn2010248.
15. Ferrell, B. R.,
Virani, R., Malloy, P., Kelly, K. (2010).
The preparation of
oncology nurses in palliative care. Seminars in Oncology
Nursing, 26(4), 259-265.
16. Ferrell, B.
Palliative care research: nursing response to emergent society
needs. Nursing Science Quarterly, 23(3), 221-225. DOI:
Abernethy, A. P., Aziz, N. M.,
Basch, E., Bull, J., Cleeland, C. S., Currow, D. C., Fairclough,
D., Hanson, L., Hauser, J., Ko, D., Lloyd, L, Morrison, R. S.,
Otis-Green, S., et al. (2010).
Special Report: A strategy
to advance the evidence base in palliative medicine: Formation
of a palliative care research cooperative group.
Journal of Palliative Medicine, 12(13), 1407-1413.
Levit, L., Smith, A.,
Benz, E., Ferrell, B. R. (2010).
Ensuring quality cancer care
through the oncology workforce. Journal of
Oncology Practice, 6(1), 7-11. DOI:
Ferrell, B. R.,
Virani, R., Jacobs, H. H., Malloy, P., & Kelly, K. (2010). Arts
and humanities in palliative nursing education. Journal of
Pain Symptom Management, 39(5), 941-945. DOI:
20. Ferrell, B. R.,
Virani, R., Paice, J. A., Coyle, N., & Coyne, P. (2010).
Evaluation of palliative care nursing education seminars.
European Journal of Oncology Nursing, 14(1), 74-79. DOI:
Grant, M., & Sun,
V. (2010). Advances in quality of life at the end of life.
Seminars in Oncology Nursing, 26(1), 26-35. DOI:
Paice, J. A.,
Ferrell, B. R., Coyle, N., Coyne, P., & Smith, T. (2010). Living
and dying in East Africa: Implementing the End-of-Life Nursing
Education Consortium curriculum in Tanzania. Clinical Journal
of Oncology Nursing, 14(2), 161-166.
Ferrell, B. R. (2010).
Palliative care research:
Nursing response to emergent society needs.
Nursing Science Quarterly, 23(3), 221-225. DOI:
24. Grant, M., Elk, R., Ferrell, B. R., Morrison, R. S. & von Gunten,
C. F. (2009).
Current status of palliative care-clinical
implementation, education, and research. CA A Cancer Journal
for Clinicians, 59(5), 327-335.
Lange, J., Shea, J.,
Grossman, S., Wallace, M., Ferrell, B. R. (2009).
Validation of the
end-of-life nursing education consortium knowledge assessment
Test (ELNEC-KAT): An abbreviated version. Journal
of Hospice and Palliative Nursing, 11(5), 284-290.
26. Jacobs, H. H.,
Ferrell, B. R., Virani, R., & Malloy, P. (2009). Appraisal of The
Pediatric End-of-Life Nursing Education Consortium training
program. Journal of Pediatric Nursing, 24(3), 216-221. DOI:
27. O' Mara, A. M., St. Germain, D., Ferrell, B. R., & Borneman, T. (2009). Challenges
to and lessons learned from conducting palliative care research.
Journal of Pain and Symptom Management, 37(3),
Otis-Green, S., Ferrell, B. R.,
Spolum, M., Uman, G., Mullan, P., Baird, P., Grant, M. (2009).
An overview of the ACE project ~ Advocating for clinical
excellence: Transdisciplinary palliative care education.
Journal of Cancer Education, 24(2), 120-126.
Altilio, T., Otis-Green, S., & Dahlin, C. M. (2008).
the National Quality Forum Preferred Practices for Palliative
and Hospice Care: A social work perspective. Journal of
Social Work in End Life Palliative Care, 4(1), 3-16.
30. Ferrell, B. R., Levy, M. H., & Paice, J. (2008).
Managing pain from advanced cancer in the palliative care
setting. Clinical Journal of Oncology Nursing, 12(4),
31. Otis-Green, S.,
Lucas, S., Spolum. M., Ferrell, B. R.., & Grant, M. (2008).
Promoting excellence in pain management and palliative care for
social workers. Journal of Social Work in End-of-Life and
Palliative Care, 4(2), 120-134.
32. Borneman, T., Koczywas, M., Cristea, M., Reckamp, K., Sun, V. &
Ferrell, B. R. (2008). An interdisciplinary care approach for
integration of palliative care in lung cancer. Clinical Lung
Cancer. 9(6), 352-360.
33. Sun, V., Ferrell, B.
R., Juarez, G., Wagman, L. D., Yen, Y. & Chung, V. (2008).
Symptoms concern and quality of life in
Oncology Nursing Forum, 32(3), 1-8.
Paice, J. A.,
Ferrell, B. R., Coyle, N., Coyne, P., & Callaway, M. (2008).
Global efforts to improve palliative care: The international
end-of-life nursing education consortium training programme.
Journal of Advanced Nursing, 61(2), 173-180.
K., Ersek, M., Virani, R., Malloy, P., & Ferrell, B. R. (2008).
End-of-Life Nursing Education Consortium. Geriatric Training
Program: Improving palliative care in community geriatric care
settings. Journal of Gerontological Nursing, 34(5),
28-35. DOI: 10.3928/00989134-20080501-06.
T., Gardia, G., Otis-Green, S. (2008).
Social work practice in
palliative and end-of-life care: A report from the summit.
Journal of Social Work in End-of-Life and Palliative Care, 3(4),
Lorenz, K. A., Lynn, J., Dy, S. M., Shugarman, L. R., Wilkinson,
A., Mularski, R. A., Morton, S. C., Hughes, R. G., Hilton, L.
K., Maglione, M., Rhodes, S. L., Rolon, C, Sun, V. C., et al.
Evidence for improving palliative care at the end of life:
systematic review. Annals of Internal Medicine, 148(2),
38. Malloy, P., Paice,
J., Virani, R., Ferrell, B. R., & Bednash, G. P. (2008).
End-of-life nursing education consortium: 5 years of educating
graduate nursing faculty in excellent palliative care.
Journal of Professional Nursing, 24(6), 352-357.
39. Malloy, P., Virani,
R., Kelly, K., Jacobs, H. H., & Ferrell, B. R. (2008).
years and 50 courses later: End-of-life nursing education
consortium continues commitment to provide excellent palliative
care education. Journal of Hospice and Palliative Nursing, 10(4),
Virani, R., Malloy, P., Ferrell, B. R., & Kelly, K. (2008).
Statewide efforts in promoting palliative care. Journal of
Palliative Medicine, 11(7), 991-996.
Altilio, T., Gardia, G., & Otis-Green, S. (2007).
practice in palliative and end-of-life care: A report from the
Journal of Social Work in End-of-Life and Palliative Care,
3(4), 68-86. DOI:
Ferrell, B. R.,
Dahlin, C., Campbell, M., Paice, J., Malloy, P, Virani, R.
(2007). End-of-life nursing education consortium (ELNEC) training
programs: Improving palliative care in critical care.
Critical Care Nursing Quarterly, 30(3), 206-212.
Podnos, Y., Borneman,
T., Koczywas, M., Uman, G., & Ferrell, B. R. (2007).
concerns and resource utilization in patients with lung cancer.
Journal of Palliative Medicine, 10(4), 899-903. DOI:
P., Paice, J., Ferrell, B. R., Malloy, P., Virani, R., &
Fennimore, L. (2007).
nursing education consortium training program: Improving
palliative care in cancer. Oncology Nursing Forum, 34(4),
B. R., Connor, S. R., Cordes, A., Dahlin, C. M., Fine, P. G.,
Hutton, N., et. al.
(2007). The national agenda for quality
palliative care: The National Consensus Project and the National
Quality Forum. Journal of Pain and Symptom Management,
33 (6), 737-744.
M., Hanson, J., Mullan, P., Spolum, M., & Ferrell, B. R. (2007).
end-of-life education to cancer centers: Overview of program and
of evaluation. Journal of Cancer Education, 22, 140-148.
I. C., Grant, M., Aziz, N. M., Payne, R., Kagawa-Singer, M.,
Dunn, G. P. (2007).
Prospective integration of cultural
consideration in biomedical research for patients with advanced
cancer: Recommendations from an international conference on
malignant bowel obstruction in palliative care. Journal of
Pain Symptom Management, 34(1 Suppl), S28-39. DOI:
P., Sumner, E., Virani, R., & Ferrell, B. R. (2007). End-of-life
nursing education consortium for pediatric palliative care (ELNEC-PPC).
MCN The American Journal of Maternal Child Nursing, 32(5),
298-302; quiz 303-294.
Duensing, L. & Otis-Green, S., (Eds), (2007).
The impact of culture on
pain management, The Pain Practitioner: Special
Edition, 17(2), Summer. Website:
50. Mularski, R. A., Dy,
S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle,
P. G., Morton, S. C., Sun, V. C., et al. (2007). A systematic
review of measures of end-of-life care and its outcomes.
Health Services Research, 42(5), 1848-1870.
B. R., Virani, R., & Malloy, P. (2006).
Evaluation of the end-of-life nursing education consortium project
in the USA. International Journal of Palliative Nursing, 12(6),
B. R. (2006).
Understanding the moral distress of nurses
witnessing medically futile care. Oncology Nursing Forum,
P., Ferrell, B. R., Virani, R., Wilson, K., & Uman, G. (2006).
Palliative care education
for pediatric nurses. Pediatric Nursing, 32(6), 555-561.
Malloy, P., Ferrell, B. R., Virani,
R., Uman, G., Rhome, A. M., Whitlatch, B., & Bednash, G. (2006).
end-of-life nursing education for continuing education and clinical staff
Journal for Nurses in
Paice, J. A.,
Ferrell, B. R., Virani, R., Grant, M., Malloy, P., & Rhome, A. (2006). Graduate
nursing education regarding end-of-life care.
Paice, J. A., Ferrell, B. R., Virani,
R., Grant, M., Malloy, P., & Rhome, A. (2006). Appraisal of the graduate
end-of-life nursing education consortium training program. Journal of
Palliative Medicine, 9(2), 353-360.
T. & Otis-Green, S. (2006). “Res ipsa loquitur”…It speaks for itself…Social
work values, pain, and palliative care. Journal of Social Work in End-of-Life &
Palliative Care, 1(4), 3-6. DOI:
B. R. (2005). Overview of the domains of variables relevant to end-of-life care.
Journal of Palliative Medicine,
(Suppl 1), S22-29. DOI:
Ersek, M., & Ferrell, B.
nursing education: Opportunities for gerontological nurses. Journal of
Gerontological Nursing, 31(7), 45-51.
Ersek, M., Grant, M. M., & Kraybill,
B. M. (2005). Enhancing end-of-life care in nursing homes: Palliative Care
Educational Resource Team (PERT) program. Journal of Palliative Medicine, 8(3),
Ferrell, B. R., Virani, R., Grant, M., Rhome, A., et al. (2005).
Evaluation of the end-of-life nursing education consortium undergraduate faculty
training program. Journal of Palliative Medicine, 8 (1), 107-114. DOI:
D., Matzo, M., Pitorak, E., Ferrell, B. R., & Malloy, P. (2005).
and care at the time of death: Content of the ELNEC curriculum and teaching
strategies. Journal for Nurses in Staff Development, 21(3),
Lorenz, K., Lynn, J.,
Morton, S., Dy, S., Shugarman, L,.
Wilkinson, A, Mularski,
R., Sun, V. et al. (2005).
Methodological approaches for a systematic review of end-of-life care.
Journal of Palliative Medicine, 8(Suppl 1), S4-11.
B. R. (2004). Palliative care research: The need to construct paradigms.
Journal of Palliative Medicine, 7(3), 408-410.
Ferrell, B. R. (2004).
care: An essential aspect of quality cancer care. Surgical Oncology Clinics
of North America, 13(3), 401-411,
D., Matzo, M., Coyne, P., Ferrell, B. R., & Penn, B. (2004).
Teaching Symptom Management
in End-of-Life Care:
The didactic content and teaching strategies based on the
end-of-life nursing education curriculum.
Journal for Nurses in Staff Development, 20(3), 103-115.
R. S., Rosenfeld, K. E., Grant, M., Aziz, N., Byock, I., Sloan, J. (2004).
Palliative care research: Issues and opportunities. Cancer Epidemiology
Biomarkers & Prevention, 13(3), 337-339.
K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L., Sun, V., et
End-of-life care and outcomes. AHRQ Evidence Report Technology
Assessment (Summary) (110), 1-6.
D., Coyle, N., & Ferrell, B. R. (2004).
Why isn't all care 'palliative care'?:
Care that’s based on need rather than
American Journal of Nursing, 104(11), 11. DOI: 00000446-200411000-00001 [pii].
Matzo, M. L., Sherman, D. W.,
Nelson-Marten, P., Rhome, A., & Grant, M. (2004).
Ethical and legal issues in
end-of-life care: Content of the End-of-Life Nursing Education Consortium
curriculum and teaching strategies. Journal for Nurses in Staff Development,
20(2), 59-66; Quiz 67-68.
Sherman, D. W., Matzo, M. L., Paice,
J. A., McLaughlin, M., & Virani, R. (2004).
Learning pain assessment and
management: A goal of the End-of-Life Nursing Education Consortium. The
Journal of Continuing Education in Nursing, 35(3), 107-120; Quiz 141-142.
72. Matzo, M., Sherman, D.,
Sheehan, D., Ferrell, B. R., & Penn, B. (2003).
Communication skills for
end-of-life nursing care: Teaching strategies from the ELNEC curriculum.
Nursing Education Perspectives, 24(4), 176-183.
Dubois, M. Y., Fine, P. G.,
Fischberg, D., Ferrell, B. R., & Taylor, M. L. (2003). Pain management at the end
of life: Often a difficult call. Pain Medicine, 4(1), 81-84. DOI:
Matzo, M. L., Sherman, D. W., Lo, K., Egan, K. A., Grant, M., & Rhome, A.
Strategies for teaching loss, grief, and bereavement. Nurse Educator,
Ferrell, B. R. & Borneman, T. (2002).
Community implementation of home care
palliative care education. Cancer Practice, 10(1), 20-27.
Ferrell, B. R., Virani, R., Grant, M., Coyne, P.,
& Uman, G. (2000).
Beyond the supreme court decision: Nursing perspectives on
end-of-life care. Oncology Nursing Forum, 27(3), 445-455.
Ferrell, B. R., Grant, M., & Virani,
R. (2001). Nurses urged to address improved end-of-life care in textbooks.
Oncology Nursing Forum, 28(9), 1349.
Palliative Medicine Pocketbook
Moses, B. (2013). MA: Tarascon Publishing. ISBN:
Death and Dying: Life and Living,
- Corr, C. A., Nabe,
C. M., & Corr, D. M. (2012).
CA: Wadsworth, Thomson Learning
and Loss: Theories and Skills for Helping Professionals,
- Walsh, K.
(2012). MA: Pearson Publishers. ISBN:
Handbook of Health Social Work,
- Gehlert, S. &
Browne, T. (2011). NY: John Wiley & Sons. ISBN: #978-0470643655.
Making Health Care Whole: Integrating
Spirituality into Patient Care
C. M., & Ferrell, B. R. (2010). PA: Templeton Press. ISBN: 9781599473505.
Reflections of a Loving
Partner: Caregiving at the End of Life
C. A. (2010). FL: Quality of Life Publishing Co. ISBN: 978-0-9816219-3-7.
Palliative Care: Transforming the Care of Serious Illness
D. E., Isaacs, S. L., & Hughes, R. (Eds.) (2010). CA: Jossey-Bass. ISBN:
Dickens, D. S. (2010).
Comparing pediatric deaths with and without hospice
support. Pediatric Blood Cancer, 54, 746-
750. DOI: 10.1002/pbc.22413.
The Last Dance: Encountering Death and Dying,
L. A., & Strickland A. L. (2010). McGraw-Hill, ISBN:
Swallowed by a Snake: The Gift of the Masculine Side of Healing,
- Golden, T. R. (2010).
Golden Healing Publishing LLC. ISBN: 978-0965464918
Living with Grief: Diversity and End-of-Life Care
book published by the Hospice Foundation of America. Each year addresses a
different topic relating to grief.
Cancer and End-of-Life Care
Diversity and End-of-Life Care
· Children and Adolescents
· Before and After Death
· Ethical Dilemmas at the End of Life
· After Sudden Loss
Dorman, S., Jolley, C., Abernethy, A., Durrow, D., Johnson, M., Farquhar, M., et
al. (2009). Researching breathlessness
in palliative care: Consensus statement
of the National Cancer Research Institute Palliative Care Breathlessness
Subgroup. Palliative Medicine, 23, 213-227. DOI:
Knapp, C. A. (2009). Research in
pediatric palliative care: Closing the gap between what is and is not known.
Journal of Hospice & Palliative Medicine, 26(5), 392-398. DOI:
S. E. (2009). The use of pediatric advance directives: A tool for palliative
care physicians. American Journal of
Hospice & Palliative Medicine, 25(6),
15. Palliative Care Nursing: Quality Care to the End-of
-Life, 3rd Edition
- Matzo, M., & Sherman, D. (2009). NY: Springer Publishing Company.
Counseling Individuals with Life-Threatening Illness
Doka, K. J.
(2009). NY: Springer Publishing Company. ISBN: 978-0826115416.
17. The End of Life Advisor
- Dolan, S. R.,
& Vizzard, A. R. (2009). Kaplan Publishing. ISBN:
Pain Management: The
Resource Guide for Home Health & Hospice Nurses
C. O, & Morgan, B. M. (2008). MD: Hopkins Medical Products,
Communication as Comfort:
Multiple Voices in Palliative Care
- Ragan, S. L., Wittenberg-Lyles, E. M., Goldsmith, J., &
Sanchez-Reilly, S. (2008). NY: Routledge, Taylor & Francis
20. Handbook of Bereavement Research and Practice: Advances in
Theory and Intervention
- Stroebe, M. S.,
Hansson, R. O., Schut, H, & Stroebe, W. (2008). American
21. Harper, J., Hinds, P. S., Baker, J.
N., Hicks, J., Spunt, S. L., & Razzouk, B. I. (2007). Creating a
palliative and end-of-life
program in a cure-oriented pediatric
setting: The zig-zag method. Journal of Pediatric Oncology
Nursing, 24(5), 246-
22. Hospice and Palliative Nursing: Scope and Standards of Practice,
- Hospice and
Palliative Nurses Association. (2007). MD: American Nurses
Association. ISBN #: 1558102078.
in Palliative Care, 2nd
- Panke, J.T., &
Coyne, P. (2006). PA: Hospice and Palliative Nurses Association.
24. Hudson, P. L., Schofield, P., Kelly, B., Hudson, R., Street, A.,
O’Connor, M., et al. (2006). Responding to desire to die
statements from patients with advanced disease: Recommendations
for health professionals. Palliative Medicine, 20,
25. Mularski, R. A., Curtis, J. R., Billings, J. A., Burt, R., Byock,
I., Fuhrman, C., et al. (2006). Proposed quality measures for
palliative care in the critically ill: A consensus from the
Robert Wood Johnson Foundation Critical Care Workgroup.
Critical Care Medicine, 34(11, Suppl), S404-S411. DOI:
Pain Management: The
Resource Guide for Home Health & Hospice Nurses
C. O, & Morgan, B. M. (2008). MD: HcPro, Inc. ISBN: 1601464606.
and Practice of Palliative Care and Supportive Oncology,
A., Portenoy, R., & Weissman, D. (2006).
MD: Lippincott Williams & Wilkins. ISBN #: 0781733243.
Living Through Loss: Interventions Across the Life Span
- Hooyman, N. R., &
Kramer, B. J. (2006). NY: Columbia University Press. ISBN:
A National Framework and Preferred Practices
for Palliative and Hospice Care Quality
- Corrigan, J. M.
(2006). DC: National Quality Forum. ISBN #: 1933875062.
30. A Grace Disguised: How the Soul Grows Through Loss
J. (2005). MI: Zondervan Publishing House. ISBN: 9780310258957
31. Living With Dying: A Handbook
for End-of-Life Healthcare Practitioners
J., & Silverman, P. (2004). NY: Columbia University Press. ISBN
Loss: Learning to Live with Unresolved Grief
P. (2000). MA: Harvard University Press. ISBN: 978-0674003811
Healing after Loss:
Daily Meditations for Working Through Grief
- Hickman, M. W. (1994).
NY: Avon Books. ISBN: 978-0380773381. Christian slant but
Oxford Textbook of Palliative Social Work
T. & Otis-Green, S. (2011). New York, NY: Oxford University Press.
Oxford Textbook of Palliative Nursing
B. R., & Coyle, N. (2010). NY: Oxford University Press. ISBN #: 0195391349.
Oxford Textbook of Palliative Medicine, 4th Edition
- Hanks, G., Cherny, N. I.,
Christakis, N. A., Fallon, M., Kaasa, S., & Portenoy, R. K. (2009). NY: Oxford
ISBN #: 0198570295.
Nature of Suffering and the Goals of Nursing
Ferrell, B. R., & Coyle, N. (2008). NY: Oxford University Press. ISBN #:
Please check the
University Press Online Catalog and search "Palliative Care"
for more books.
Central (BMC) Palliative Care
An online journal publishing research
articles after full peer review. A few of the articles available:
Guidelines on Analgesia and Sedation in Dying Intensive Care Unit
Meetings in Palliative Care: Multidisciplinary Clinical Practice
Quality of Life at the End of Life
Palliative Care – a
critical analysis of 7 years experience
Care of the Dying Patient
- Video Listing
- This project, funded by the Project
on Death in America, is a listing of more than 250 videos recommended for use in
palliative care education.
Compiled by Marianne Matzo, RN, PhD, FAAN.
Advance Palliative Care (CAPC)
Excellent resource for
palliative care issues.
- CAPCconnect Forum
Many project listings from hospitals, outpatient clinics,
long-term care, and more.
Between a Rock and a Hard
Place: Clinical Ethics in Action
Ethics Case Study Series by Dr. David Seres on behalf of the
International Clinical Ethics Section (ICES) of the American
Society for Parenteral and Enteral Nutrition.
Completing a Life:
for Taking Charge, Finding Comfort, Reaching Closure
- An interactive CD
inviting patients and families to learn about the practical, emotional,
spiritual, and medical issues faced by those dealing with advanced illness. The
CD is available through the Instructional Media Center, at Michigan State
University at (517) 353-9229.
Core Curriculum for the Advanced Practice Hospice and Palliative
The goal of the curriculum is to provide a foundation of
knowledge from which APNs can practice palliative care including
advanced skills, management of complex life-limiting,
progressive issues and special clinical issues.
in Palliative and
End-of-Life Care (EPEC)
- Ordering information and description of a train the
trainer program designed to educate physicians in the essential clinical
competencies in end-of-life care. Program supported by a grant from the Robert
Wood Johnson Foundation.
End-of-Life Care: Improving Communication Skills to Enhance
- Learn the differences
between hospice and palliative care, and how to communicate with
patients and families to learn their end-of-life wishes. CE
credits offered by Medscape Nurses without fee for this
Web-based continuing education program. (One time-free
registration required to access Medscape.)
End-of-Life: Exploring Death in
- Presents information on the "End-of-Life" series from
National Public Radio (NPR). Includes an audio file and transcripts from the
programs. Highlights issues such as coping with death, palliative medicine,
grief and bereavement, funerals, reincarnation, and funeral homes. Includes a
list of resources for people with life-threatening diseases and their families.
Contains a bibliography of books and journal articles dealing with terminal
illness, bereavement, grief, and medical and social policy relating to the care
of the terminally ill.
End-of-Life Nursing Education
Consortium (ELNEC) Project: Advancing Higher Education in Nursing
- A comprehensive national education program to improve
end-of-life care by nurses.
of Life Online Curriculum, US Veterans Administration and SUMMIT,
Stanford University Medical School
- An online learning tool
on palliative care, hospice care, and bereavement. Contains case discussion,
and generally does a good job of education. Contains the
End-of-Life Professional Caregiver Survey
- Yale School of Nursing
This is an excellent
tool for use to assess staff knowledge about palliative care.
Sheets - American Psychological Association
Culturally Diverse Communities and End-of-Life Care
Fact Sheets – International Association for the Study of Pain (IASP)
Pain and Symptom Management During the Final Days of Life
Relief as a Human Right
Pain Control Near the End of Life
15. Fast Facts
and Concepts – End of Life/Palliative Education Resource Center (EPERC),
Over 260 one-page synopsis on
topics important to palliative and end-of-life care.
Dyspnea at End of Life
Department Management of Hospice Patients
Initiating a Hospice Referral from the
Used in End-of-Life Care Education,
City of Hope, Duarte, CA
- A collection of instruments
currently in use by City of Hope Investigators to assess staff knowledge and
needs to improve end-of-life care. Curriculum Survey for Nursing Schools;
Clinical Nurse Survey; Home Care/Hospice Agencies; Home Care Nurses and HHAs;
Knowledge Assessment for Nurses; Knowledge Assessment for HHA’s; Chart Audit
Tool; Case Analysis Form.
17. Palliative Care Quiz for Nursing
Ross, M. M., McDonald, B., & Mc Guinness, J. (1996).
The palliative care quiz for
nursing (PCQN): the development
of an instrument to measure nurses’ knowledge of palliative care.
Journal of Advanced Nursing, 23(1), 126-137.
18. Palliative Sedation
- Kirk, T. W., & Mahon, M. M.
(2010). National Hospice and Palliative Care Organization (NHPCO) position
statement and commentary on the use of palliative sedation in the imminently
dying terminally ill patients. Journal of
Pain and Symptom Management, 39(5),
and Palliative Nurses Association Position Statement on Palliative Sedation
Statement on Palliative Sedation - American Academy of Hospice and
Palliative Sedation: When and How? - The University of Texas, MD Anderson Cancer Center
Sedation: Cautions, Concerns, Indications
A PowerPoint presentation regarding the
considerations for initiating palliative sedation. Created by Dr. M. N. Sheehan
of Loyola University Chicago and Sponsored by Supportive Care Coalition,
Catholic Health Association of the United States, and The George Washington
Institute for Spirituality and Health (GWISH)
Quality Care at the End-of-Life Survey
City of Hope,
survey was designed based on the National Consensus Project for Quality
Palliative Care guidelines and used at the City of Hope as a tool for assessing
quality care. Users are invited to adapt and use it in their own institutions
to assess the quality of care provided and to measure the institution’s
performance in comparison with national guidelines.
TIPS Sheets - Hospice and Palliative Nurses Association (HPNA)
for Communicating with Seriously Ill Patients (also Spanish
for Nearing Death Awareness (also Spanish Version)
for Recognizing Behaviors Indicating Patient has Pain
for Recognizing Pain in Patients with an Inability to
Communicate Verbally (also Spanish Version)
for Respecting the Patient & Family Cultural Beliefs
for Talking with Dying Patients (also Spanish Version)
21. Your Guide to
Creating an Outpatient Palliative Care Program
- This online
toolkit gives you a step-by-step guide on how you can create an
innovative outpatient palliative care program.
A National Framework and Preferred Practices for Palliative and Hospice Care
- This National
Quality Forum report endorses a framework for palliative and hospice care that
is intended to be the first step in developing a comprehensive quality
measurement and reporting system for palliative care and hospice services and
preferred practices designed to improve palliative and hospice care.
Clinical Practice Guidelines for Quality Palliative Care
- The National
Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care
represent consensus achieved among nationally recognized experts on voluntary,
evidence-based guidelines to ensure quality and consistency of care. The
guidelines can be downloaded from the website.
Consensus Statement: Palliative and Supportive Care in Advanced
statement is the result of a consensus conference in which
experts and leaders in the field worked to define the important
knowledge gaps with regards to palliative care and advanced
heart failure. The statement outlines future research
objectives that can guide this field of study.
Renal Disease Workgroup Report
- Clinicians and researchers working with end-stage renal
disease (ESRD) can now access an important palliative care resource online.
Promoting Excellence announces the availability of “Completing the Continuum
of Nephrology Care – the End-Stage Renal Disease Peer Workgroup Recommendations
to the Field” at its web site. The report presents the methods, findings,
recommendations and products of the ESRD Workgroup sponsored by the Promoting
Excellence in End-of-Life Care Project.
5. Guidelines for the Assessment of
Bereavement Risk in Family Members of People Receiving Palliative Care
These Centre for Palliative Care guidelines aim to assist providers of services
to families of dying people to identify family members at risk of complicated
bereavement outcomes based on best available evidence.
National Consensus Project for Quality
Palliative Care – Second Edition
Guidelines were developed by leaders in the field who examined other national
and international standards with the intent to promote consistent, accessible,
comprehensive, optimal palliative care through the health care spectrum. Within
the guidelines there are eight domains to the provision of palliative care.
in End-of-Life Care
- Advanced Practice Nurses (APNs) convened to hold a
conversation on the state of palliative care advanced practice nursing in the
United States, to identify gaps in and barriers to that practice and to develop
strategies for the future. The
report on this
important gathering of APNs working in the field of palliative care is available
on the Promoting Excellence in End-of-Life Care website.
- A special series of articles describing the experiences and
exciting results of 22 innovative projects funded by Promoting Excellence in
End-of-Life Care have been published in The Journal of Palliative Medicine.
The articles, edited by Ira Byock, Promoting Excellence Director, are included
Innovations section of the journal. Begins in 2003, Volume 6, Number 2.
Psychosocial Care: Hospice Palliative Care
Program Symptom Guidelines
This guideline is adapted for interprofessional primary care providers working
in various setting and provides recommendations for assessing and addressing
psychosocial issues of adult patients who are facing a progressive life limiting
Other Organizational Links
A position statement from American Nursing Leaders
Advanced Practice Nurses Role in Palliative Care
2. American Academy of
Hospice and Palliative Medicine
Palliative Care and Hospice
Practice Guidelines for Quality Palliative Care
3. American Nurses Association Position
Foregoing Nutrition and Hydration
Nursing Care and Do-Not-Resuscitate Decisions
Privacy and Confidentiality
4 . American Society of Pain Management Nurses (ASPMN) Position Papers
Pain Management at the End of Life
and Palliative Nurses Association (HPNA) Position Statements
Artificial Nutrition and Hydration in
in Palliative Care Nursing Practice
Legalization of Assisted Suicide
Value of Hospice and
Palliative Care Nursing Certification
of Professional Nurse in Palliative Care
- Value of Hospice and Palliative Nursing Certification
Value of Nursing
Assistant in Palliative Care
Task Force Statement on the Ethics of Hospice Participation in Research
- This task force statement discusses the important of
hospices' potential contributions to research and describes way in which
characteristics of hospice patients, and hospices' structure, create ethical
challenges that may limit these contributions. It concludes by proposing
ways in which hospices and national professional organizations can begin to
overcome some of these challenges.
Oncology Nursing Society (ONS) and Association of Oncology
Social Work (AOSW) Joint Position Statement
Palliative and End-of-Life Care
8. Oncology Nursing
Society (ONS) Position Statements
Access to Quality Cancer Care
Cancer Pain Management
Nurse's Responsibility to the Patient
Requesting Assistance in Hastening Death
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November 4, 2013