City of Hope Pain & Palliative Care Resource Center

 

 


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

1.      Wittenberg-Lyles, E., Goldsmith, J., Ferrell, B., & Burchett, M. (2104). Assessment of an interprofessional online curriculum for palliative care communication training. Journal of Palliative Medicine, 17(x) 1-7. DOI: 10.1089/jpm.2013.0270.

2.       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.
DOI: 10.1097/NCI.0b013e3182832a94.

3.     Otis-Green, S., Wakabayashi, M. T., Morgan, R., Hakim, A., Ferrell, B., Sun, V., Yang, E. & Grant, M. (2013). Palliative care opportunities for women with advanced ovarian cancer associated with intraperitoneal chemotherapy. Journal of Palliative Medicine,  16(1), 44-53. DOI: 10.1089/jpm.2012.0174. .

4.     Freeman, B. (2013). CARES: An acronym organized tool for the care of the dying. Journal of Hospice & Palliative Nursing, 15(3), 147-153. DOI: 10.1097/NJH.0b013e318287c782.   CARES Tool.

5.     Ferrell, B., Otis-Green, S., Baird, P., and Garcia, A., (2013). Nurses’ responses to requests for forgiveness at the end of life. Journal of Pain and Symptom Management, 46(2): DOI: 10.1016/j.painsymman.2013.05.009

6.     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.  

7.     Otis-Green, S. (2013). Editorial: Changing the change agents through palliative care educational for psycho-oncology professionals. Omega, 67(1-2), 1-4. DOI: 10.2190/OM.67.1-2.a

8.     Cooke, L., Grant, M., Gemmill, R. (2012). Discharge needs of allogeneic transplantation recipients. Clinical Journal of Oncology Nursing, 16(4), E142-E149. DOI: 10.1188/12.CJON.E142-E149.

9.     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: 10.1097/NJH.0b013e318258043a.

10.     Smith, T., Temin, S., Alesi, E., Abernethy, A., Balboni, T., Basch, E., Ferrell, B. R., Loscalzo, M., Meier, D., Paice, J., Peppercorn, J., Somerfield, M., Stovall, E., & Von Roenn, J. (2012). American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. Journal of Clinical Oncology, 30(8), 880-887. DOI: 10.1200/JCO.2011.38.5161.

11.    Del Ferraro, C., Grant, M., Koczywas, M., & Dorr-Uyemura, L. A. (2012). Management of anorexia-cachexia in late-stage lung cancer patients. Journal of Hospice & Palliative Nursing, 14(6), 397-402.  DOI: 10.1097/NJH.0b013e31825f3470.

12.     Ferrell, B. R. (2011). Advancing the psychosocial care of patients with cancer at life’s end: A global nursing response. Oncology Nursing Forum, 38(5), E335-E340. DOI: 10.1188/11.ONF.E335-E340.

13.    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: 10.1188/11.CJON.411-417.

14.     Ferrell, B. R., Koczywas, M., Grannis, F., Harrington, A., (2011). Palliative care in lung cancer. Surgical Clinics of North America, 91(2), 403-417. DOI: 10.1016/j.suc.2010.12.003.

15.     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.
DOI: 10.1016/j.suponc.2011.04.002.

16.     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: 10.1097/NCI.0b013e318232c6ef.

17.    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.

18.     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.

19.     Ferrell, B. R. (2010). Palliative care research: nursing response to emergent society needs. Nursing Science Quarterly, 23(3), 221-225. DOI: 10.1177/0894318410371842.

20.     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. DOI: 10.1089/jpm.2010.0261.

21.     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: 10.1200/JOP.091067.

22.     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: 10.1016/j.jpainsymman.2009.11.314.

23.    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: 10.1016/j.ejon.2009.08.004.

24.     Grant, M., & Sun, V. (2010). Advances in quality of life at the end of life. Seminars in Oncology Nursing, 26(1), 26-35. DOI: 10.1016/j.soncn.2009.11.005.

25.     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. DOI: 10.1188/10.CJON.161-166.

26.     Ferrell, B. R. (2010). Palliative care research: Nursing response to emergent society needs. Nursing Science Quarterly, 23(3), 221-225.  DOI: 10.1177/0894318410371842.

27.    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.  DOI: 10.3322/caac.20032.

28.     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. DOI: 10.1097/NJH.0b013e3181b4cc54.

29.     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: 10.1016/j.pedn.2008.03.001.

30.    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), 387-394.
DOI: 10.1016/j.jpainsymman.2008.03.014.

31.    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. DOI: 10.1080/08858190902854616.

32.    Altilio, T., Otis-Green, S., & Dahlin, C. M. (2008). Applying 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.
DOI: 10.1080/15524250802071999.

33.    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), 575-581. DOI: 10.1188/08.CJON.575-581.

34.    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. DOI: 10.1080/15524250802353942.

35.    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. DOI: 10.3816/CLC.2008.n.051.

36.    Sun, V., Ferrell, B. R., Juarez, G., Wagman, L. D., Yen, Y. & Chung, V. (2008). Symptoms concern and quality of life in hepatobiliary cancers. Oncology Nursing Forum, 32(3), 1-8. DOI: 10.1188/08.ONF.E45-E52.

37.    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.
DOI: 10.1111/j.1365-2648.2007.04475.x.

38.     Kelly, 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.

39.    Altilio, 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), 68-86.  DOI: 10.1080/15524250802003513.

40.     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. (2008). Evidence for improving palliative care at the end of life: A systematic review. Annals of Internal Medicine, 148(2), 147-159. 

41   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.
DOI: 10.1016/j.profnurs.2008.06.001.
   

42.     Malloy, P., Virani, R., Kelly, K., Jacobs, H. H., & Ferrell, B. R. (2008). Seven 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), 233-239. DOI: 10.1097/01.NJH.0000319163.35596.59.

43.    Virani, R., Malloy, P., Ferrell, B. R., & Kelly, K. (2008).  Statewide efforts in promoting palliative care. Journal of Palliative Medicine, 11(7), 991-996. DOI: 10.1089/jpm.2007.0291.

44.     Altilio, T., Gardia, G., & Otis-Green, S. (2007). 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), 68-86. DOI: 10.1080/15524250802003513.

45.    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.
DOI:
10.1097/01.CNQ.0000278920.37068.e9.

46   Podnos, Y., Borneman, T., Koczywas, M., Uman, G., & Ferrell, B. R. (2007). Symptom concerns and resource utilization in patients with lung cancer. Journal of Palliative Medicine, 10(4), 899-903. DOI: 10.1089/jpm.2006.0232.

47.    Coyne, P., Paice, J., Ferrell, B. R., Malloy, P., Virani, R., & Fennimore, L. (2007). Oncology end-of-life nursing education consortium training program: Improving palliative care in cancer. Oncology Nursing Forum, 34(4), 801-807. DOI: 10.1188/07.ONF.801-807.

48.    Ferrell, 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. DOI: 10.1016/j.jpainsymman.2007.02.024.

49.    Grant, M., Hanson, J., Mullan, P., Spolum, M., & Ferrell, B. R. (2007). Disseminating end-of-life education to cancer centers: Overview of program and of evaluation. Journal of Cancer Education, 22, 140-148. DOI: 10.1080/08858190701589074.

50.    Fineberg, 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: 10.1016/j.jpainsymman.2007.04.009.

51.    Malloy, 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.
DOI: 10.1097/01.NMC.0000288000.87629.de.

52.    Duensing, L. & Otis-Green, S., (Eds), (2007). The impact of culture on pain management, The Pain Practitioner: Special Edition, 17(2), Summer. Website:

53.    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. DOI: 10.1111/j.1475-6773.2007.00721.x.

54.     Ferrell, 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), 269-276.

55.    Ferrell, B. R. (2006). Understanding the moral distress of nurses witnessing medically futile care. Oncology Nursing Forum, 33(5), 922-930. DOI: 10.1188/06.ONF.922-930.

56.    Malloy, P., Ferrell, B. R., Virani, R., Wilson, K., & Uman, G. (2006). Palliative care education for pediatric nurses. Pediatric Nursing, 32(6), 555-561.

57.    Malloy, P., Ferrell, B. R., Virani, R., Uman, G., Rhome, A. M., Whitlatch, B., & Bednash, G. (2006). Evaluation of end-of-life nursing education for continuing education and clinical staff development educators. Journal for Nurses in Staff Development, 22(1), 31-36.  

58.     Paice, J. A., Ferrell, B. R., Virani, R., Grant, M., Malloy, P., & Rhome, A. (2006). Graduate nursing education regarding end-of-life care. Nursing Outlook, 54(1), 46-52. DOI: 10.1016/j.outlook.2005.04.003.

59.    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.
DOI: 10.1089/jpm.2006.9.353.

60.     Altilio, 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: 10.1300/J457v01n04_02.

61.    Ferrell, B. R. (2005). Overview of the domains of variables relevant to end-of-life care. Journal of Palliative Medicine, 8, (Suppl 1), S22-29. DOI: 10.1089/jpm.2005.8.s-22.

62.    Ersek, M., & Ferrell, B. R.  (2005). Palliative care nursing education: Opportunities for gerontological nurses. Journal of Gerontological Nursing, 31(7), 45-51.

63.    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), 556-566. DOI: 10.1089/jpm.2005.8.556.

64.     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: 10.1089/jpm.2005.8.107.

65.    Sherman, D., Matzo, M., Pitorak, E., Ferrell, B. R., & Malloy, P. (2005).  Preparation and care at the time of death: Content of the ELNEC curriculum and teaching strategies. Journal for Nurses in Staff Development, 21(3), 93-100.

66.    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. DOI: 10.1089/jpm.2005.8.s-4.

67.    Ferrell, B. R.  (2004). Palliative care research: The need to construct paradigms. Journal of Palliative Medicine, 7(3), 408-410. DOI: 10.1089/1096621041349464.

68   Ferrell, B. R.  (2004). Palliative care: An essential aspect of quality cancer care. Surgical Oncology Clinics of North America, 13(3), 401-411, vii. DOI: 10.1016/j.soc.2004.03.003.

69.    Sherman, 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.

70.    Krouse, 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.

71.    Lorenz, K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L., Sun, V., et al. (2004). End-of-life care and outcomes. AHRQ Evidence Report Technology Assessment (Summary) (110), 1-6.

72.    Mason, D., Coyle, N., & Ferrell, B. R. (2004). Why isn't all care 'palliative care'?: Care that’s based on need rather than prognosis. American Journal of Nursing, 104(11), 11. DOI: 00000446-200411000-00001 [pii].

73.    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.

74.     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.

75.    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.

76  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: 10.1046/j.1526-4637.2003.t01-1-03009.x.

77.    Matzo, M. L., Sherman, D. W., Lo, K., Egan, K. A., Grant, M., & Rhome, A. (2003). Strategies for teaching loss, grief, and bereavement. Nurse Educator, 28(2), 71-76.

78.     Ferrell, B. R. & Borneman, T. (2002). Community implementation of home care palliative care education. Cancer Practice, 10(1), 20-27. DOI: 10.1046/j.1523-5394.2002.101003.x.

79.    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.

80.    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.

       
       Recommended Publications

1.       Principles and Practice of Palliative Care and Supportive Oncology, 4th Edition
          -
      Berger, A., Portenoy, R., & Weissman, D. (2013).  MD: Lippincott Williams & Wilkins. ISBN #: 0781733243.

2.      Tarascon Palliative Medicine Pocketbook
          -     Moses, B. (2013). MA: Tarascon Publishing.  ISBN:
1449634214.

3.       Death and Dying: Life and Living, 7th Edition
          -     Corr, C. A., Nabe, C. M., & Corr, D. M. (2012). CA: Wadsworth, Thomson Learning Publishing Company.

                 ISBN-13:
978-1111840617

4.      Grief and Loss: Theories and Skills for Helping Professionals, 2nd Edition
          -    Walsh, K. (2012). MA: Pearson Publishers. ISBN:
9780205827091.

5.      Handbook of Health Social Work, 2nd Edition
          -     Gehlert, S. & Browne, T. (2011). NY: John Wiley & Sons. ISBN: #
978-0470643655.

6.      Conversations in Palliative Care: Questions and Answers with the Experts, 3rd Edition
          -     Panke, J.T., & Coyne, P. (2011). PA: Hospice and Palliative Nurses Association. ISBN: 1934654264.

7.      Palliative Care: Transforming the Care of Serious Illness
          -
       Meier, D. E., Isaacs, S. L., & Hughes, R. (Eds.) (2011). CA: Jossey-Bass. ISBN: 978-0-470-52717-7.     

8.      Living With Dying: A Handbook for End-of-Life Healthcare Practitioners    
               -
       
Berzoff, J., & Silverman, P. (2010). NY: Columbia University Press. ASIN: B006OR93L0

9.      Making Health Care Whole: Integrating Spirituality into Patient Care
          -
       
Puchalski, C. M., & Ferrell, B. R. (2010). PA: Templeton Press. ISBN: 9781599473505.             

10.      Reflections of a Loving Partner: Caregiving at the End of Life
          -
       Martin, C. A. (2010).  FL: Quality of Life Publishing Co.  ISBN: 978-0-9816219-3-7.      

11.      Dickens, D. S. (2010). Comparing pediatric deaths with and without hospice support. Pediatric Blood Cancer, 54, 746-750. DOI: 10.1002/pbc.22413.

12.    The Last Dance: Encountering Death and Dying, 9th Edition
          -    DeSpelder, L. A., & Strickland A. L. (2010). McGraw-Hill, ISBN: 978-0073405469.

13.     Swallowed by a Snake: The Gift of the Masculine Side of Healing, 2nd Edition
          -    Golden, T. R. (2010). Golden Healing Publishing LLC. ISBN: 978-0965464918

14.     Living with Grief: Diversity and End-of-Life Care   
          -    
Yearly book published by the Hospice Foundation of America. Each year addresses a different topic relating to grief.
                Topics include:

                ·
            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

15.    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: 10.1177/0269216309102520.

16.    Knapp, C. A. (2009). Research in pediatric palliative care: Closing the gap between what is and is not known. American Journal of Hospice & Palliative Medicine, 26(5), 392-398. DOI: 10.1177/1049909109345147.

17.     Zinner, S. E. (2009). The use of pediatric advance directives: A tool for palliative care physicians. American Journal of Hospice & Palliative Medicine, 25(6), 427-430. DOI: 10.1177/1049909108322294.

18.    Palliative Care Nursing: Quality Care to the End-of -Life, 3rd Edition
         -   
  Matzo, M., & Sherman, D.  (2009).  NY: Springer Publishing Company.  ISBN #: 9780826157911   

19.    Counseling Individuals with Life-Threatening Illness
         -    
Doka, K. J. (2009). NY: Springer Publishing Company.  ISBN: 978-0826115416.

20.     The End of Life Advisor
         -     Dolan, S. R., & Vizzard, A. R. (2009). Kaplan Publishing. ISBN: 978-1427798398.

21.    Pain Management: The Resource Guide for Home Health & Hospice Nurses  
          -
       Long, C. O, & Morgan, B. M. (2008). MD: Hopkins Medical Products, Inc.  ISBN: 978-1111840617.

22.   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 Group. ISBN: 0805858083.             

23.    Handbook of Bereavement Research and Practice: Advances in Theory and Intervention
          -    Stroebe, M. S., Hansson, R. O., Schut, H, & Stroebe, W. (2008). American Psychological Association.
                ISBN: 978-1-4338-0351-2.
 

24.    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), 246-254. DOI: 10.1177/1043454207303882.            

25.    Hospice and Palliative Nursing: Scope and Standards of Practice, 4th Edition
          -     Hospice and Palliative Nurses Association. (2007). MD: American Nurses Association. ISBN #: 1558102078. 
 

26.   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, 703-710. DOI: 10.1177/0269216306071814.

27.   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: 10.1097/01.CCM.0000242910.00801.53.

28.    Pain Management: The Resource Guide for Home Health & Hospice Nurses
         -
       Long, C. O, & Morgan, B. M. (2008). MD: HcPro, Inc. ISBN: 1601464606.

29.    Living Through Loss: Interventions Across the Life Span
          -    Hooyman, N. R.  (2008). NY: Columbia University Press. ISBN: 0231122470

30.    A National Framework and Preferred Practices for Palliative and Hospice Care Quality
          -    Corrigan, J. M.  (2008). DC: National Quality Forum. ISBN: 1933875062.

31.   A Grace Disguised: How the Soul Grows Through Loss
          -     Sittser, J. (2005). MI: Zondervan Publishing House. ISBN: 9780310258957

32.    Ambiguous Loss: Learning to Live with Unresolved Grief
               -
       
Boss, P. (2000). MA: Harvard University Press. ISBN: 978-0674003811

33.    Healing after Loss: Daily Meditations for Working Through Grief
          -     Hickman, M. W. (1994). NY: Avon Books. ISBN: 978-0380773381. Christian slant but excellent reviews.
     

34.   Oxford University Press Books
         
Oxford Textbook of Palliative Social Work

               -
        
Altilio, T. & Otis-Green, S. (2011).  New York, NY: Oxford University Press.
         Oxford Textbook of Palliative Nursing

          -
        Ferrell, 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 University
                 Press. ISBN #: 0198570295.

       
The Nature of Suffering and the Goals of Nursing
           -     Ferrell, B. R., & Coyle, N. (2008). NY: Oxford University Press.  ISBN #: 0195333128.            
  
         Please check the Oxford University Press: Medicine & Health section for more books.
 

                  
       Educational Materials/Curriculum


1.     
  BioMed Central (BMC) Palliative Care
          -   
  An online journal publishing research articles after full peer review.  A few of the articles available:
                 1.
       
Consensus Guidelines on Analgesia and Sedation in Dying Intensive Care Unit Patients
                 2.     Family Meetings in Palliative Care: Multidisciplinary Clinical Practice
 
                 3.     Quality of Life at the End of Life
                     
                 4.     Sedation in Palliative Care – a critical analysis of 7 years experience

2.      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.

3.      Center to Advance Palliative Care (CAPC)
          Excellent resource for palliative care issues.
          -      CAPCconnect Forum
                 Many project listings from hospitals, outpatient clinics, long-term care, and more.

4.      Between a Rock and a Hard Place: Clinical Ethics in Action
         
-
       Clinical 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.

5.      Completing a Life: A Resource 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.

6.      Core Curriculum for the Advanced Practice Hospice and Palliative Nurse
         -
          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.

7.      Education 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.  

8.      End-of-Life Care: Improving Communication Skills to Enhance Palliative Care  
         -     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.)

9.      End-of-Life: Exploring Death in America
          -      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. 

10.      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. 

11.    End 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, defines terms,
 and generally does a good job of education. Contains the following modules:

12.     End-of-Life Professional Caregiver Survey - Yale School of Nursing
          -  
This is an excellent tool for use to assess staff knowledge about palliative care. 

13.    Fact Sheets - American Psychological Association
         -    Culturally Diverse Communities and End-of-Life Care
         -    End-of-Life Care

14.    Fact Sheets – International Association for the Study of Pain (IASP)
          -
    Pain and Symptom Management During the Final Days of Life             

15.    Fast Facts and Concepts – End of Life/Palliative Education Resource Center (EPERC), Milwaukee, WI 
        
 Over 260 one-page synopsis on topics important to palliative and end-of-life care.

        
 -    Cancer Related Fatigue
          -    Dyspnea at End of Life

       -    Emergency Department Management of Hospice Patients
       -    Initiating a Hospice Referral from the Emergency Department

16.    Instruments 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 Resources
         
-      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), 914-923. DOI: 10.1016/j.jpainsymman.2010.01.009.
         -
           Hospice and Palliative Nurses Association Position Statement on Palliative Sedation   
         -
           Position Statement on Palliative Sedation - American Academy of Hospice and Palliative Medicine
         -
           Palliative Sedation: When and How? - The University of Texas, MD Anderson Cancer Center                 

19.    Quality Care at the End-of-Life Survey City of Hope, Duarte, CA
         -  
  This 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.            

20.    TIPS Sheets - Hospice and Palliative Nurses Association (HPNA)
         -     TIPS for Communicating with Seriously Ill Patients (also Spanish Version)
         -     TIPS for Nearing Death Awareness (also Spanish Version)
         -     TIPS for Recognizing Behaviors Indicating Patient has Pain (also Spanish Version)
         -     TIPS for Recognizing Pain in Patients with an Inability to Communicate Verbally (also Spanish Version)
         -     TIPS for Respecting the Patient & Family Cultural Beliefs (also Spanish Version)
         -     TIPS for Talking with Dying Patients (also Spanish Version)

      
       Guidelines/Clinical Pathways

1.      Clinical Practice Guidelines for Quality Palliative Care          
       -    
The National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care 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.

2.      Consensus Statement: Palliative and Supportive Care in Advanced Heart Failure
         -
        The 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.

3.     End-Stage 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. 

4.      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.

5.     National Framework and Preferred Practices for Palliative and Hospice Care Quality
         -     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. 

6.      Promoting Excellence 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 in the Innovations section of the journal. Begins in 2003, Volume 6, Number 2.
 

7.     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 illness.

        
       Other Organizational Links
   

         American Academy of Hospice and Palliative Medicine

         American Hospice Foundation

         American Journal of Nursing

         American Society for Pain Management Nursing

         Americans for Better Care of the Dying

         Association of Death Education and Counseling (ADEC)  
         Before I Die: Medical Care and Personal Choices

         Bereavement Support Group

         Care Search: Palliative Care Knowledge Network
         Center for Healthcare Decisions  

         Center for Hospice Care

         Center to Advance Palliative Care (CAPC)

         Coalition for Compassionate Care of California

         Compassion and Choices

         CURE

         Dying Well

         EPEC  (Education in Palliative and End-of-Life Care)

         The End-of-Life: Exploring Death in America

         End-of-Life Nursing Education Consortium (ELNEC)

         End-of-Life/Palliative Education Resource Center (EPERC)

         EPEC Project (Education  in Palliative and End-of-Life Care)   

         European Association for Palliative Care

 
         Get Palliative Care

         Griefnet.org

         Growth House

         Harvard Medical School Center for Palliative Care

         Hospice and Palliative Nurses Association

         Hospice Foundation of America

         Hospice Home Page

         Hospice for Patients and Families Facing Life Threatening Illness

         Inter-Institutional Collaborating Network On End of Life Care

         Mom, Always: Help for Mothers Facing Terminal Diagnosis  
         National Hospice and Palliative Care Organization (NHPCO)
         National Palliative Care Research Center

         National Prison Hospice Association

         On Our Own Terms: Moyers on Dying

 
         Palliative Care Network  
         Palliative Care Quality Network  
         Pallipedia: Online Palliative Care Dictionary  
         Pathways, Education & Consultation in End of Life Care  

         Promoting Excellence in End-of-Life Care

         Reclaiming the End-of-Life  
         Stop Pain

         Suncoast Hospice

         Supportive Care Coalition

        Position Statements/Standards

1.       A position statement from American Nursing Leaders
          -     Advanced Practice Nurses Role in Palliative Care           

2.      American Academy of Hospice and Palliative Medicine
          -    Access to Palliative Care and Hospice
          -    Clinical Practice Guidelines for Quality Palliative Care
          -    Palliative Sedation 

3.      American Nurses Association Position Statements
          -    Euthanasia, Assisted Suicide, and Aid in Dying  
          -    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      

5.      Hospice and Palliative Nurses Association (HPNA) Position Statements 
         -
     Artificial Nutrition and Hydration in End-of-Life Care
          -     Complementary Therapies in Palliative Care Nursing Practice
         -     Evidence-Based Practice
         -     Legalization of Assisted Suicide
         -     Pain Management

           
-
      Palliative Sedation
           
-
      Spiritual Care
         -     Value of Hospice and Palliative Care Nursing Certification
            -     Value of Professional Nurse in Palliative Care
           
-
       Value of Hospice and Palliative Nursing Certification 
         -     Value of Nursing Assistant in Palliative Care

6.      NHPCO 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. 

7.      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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Website last modified: January 21, 2014