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Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning

Published online by Cambridge University Press:  20 June 2016

Debra K. Litzelman ,
Ann H. Cottingham ,
Wilma Griffin ,
Thomas S. Inui  and
Steven S. Ivy
Debra K. Litzelman*
Affiliation:
Department of Medicine, Indiana University School of Medicine, Indianapolis, Indiana Health Services Research, Regenstrief Institute Inc., Indianapolis, Indiana Indiana University Health, Indianapolis, Indiana
Ann H. Cottingham
Affiliation:
Department of Medicine, Indiana University School of Medicine, Indianapolis, Indiana
Wilma Griffin
Affiliation:
Indiana University Health, Methodist Palliative Care, Indianapolis, Indiana
Thomas S. Inui
Affiliation:
Department of Medicine, Indiana University School of Medicine, Indianapolis, Indiana Health Services Research, Regenstrief Institute Inc., Indianapolis, Indiana
Steven S. Ivy
Affiliation:
Indiana University Health, Indianapolis, Indiana
*
Address correspondence and reprint requests to: Debra K. Litzelman, Regenstrief Institute Inc., 1050 Wishard Boulevard, RG 5, Indianapolis, Indiana 46202. E-mail: [email protected].
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Abstract

Objective:

Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life.

Method:

Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care.

Results:

Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice.

Significance of Results:

Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for “sustaining hope” (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.

Keywords

Skill developmentEnd-of-life conversationsProvider self-awareness and self-careCommunity health workersEnd-of-life conversations
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 6 , December 2016 , pp. 641 - 651
Copyright
Copyright © Cambridge University Press 2016 

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References

REFERENCES

Agledahl, K.M., Gulbrandsen, P., Forde, R., et al. (2011). Courteous but not curious: How doctors' politeness masks their existential neglect. A qualitative study of video-recorded patient consultations. Journal of Medical Ethics, 37(11), 650–654.CrossRefGoogle Scholar
Anonymous (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT principal investigators. The Journal of the American Medical Association, 274(20), 1591–1598. Erratum in JAMA, 175(16), 1232.CrossRefGoogle Scholar
Austrom, M.G., Hartwell, C., Moore, P.S., et al. (2006). A care management model for enhancing physician practice for Alzheimer's disease in primary care. Clinical Gerontologist, 29(2), 35–43.CrossRefGoogle Scholar
Bakitas, M., Stevens, M., Ahles, T., et al. (2004). Project ENABLE: A palliative care demonstration project for advanced cancer patients in three settings. Journal of Palliative Medicine, 7(2), 363–372.CrossRefGoogle ScholarPubMed
Baughman, K.R., Aultman, J., Hazelett, S., et al. (2012). Managing in the trenches of consumer care: The challenges of understanding and initiating the advance care planning process. Journal of Gerontological Social Work, 55(8), 721–737.CrossRefGoogle ScholarPubMed
Bernard, H.R. (1994). Research methods in anthropology: Qualitative and quantitative approaches. Thousand Oaks, CA: Sage.Google Scholar
Boustani, M.A., Sachs, G.A., Alder, C.A., et al. (2011). Implementing innovative models of dementia care: The Healthy Aging Brain Center. Aging & Mental Health, 15(1), 13–22.CrossRefGoogle ScholarPubMed
Bransford, J.D., Brown, A.L. & Cocking, R.R. (eds.) (2001). How people learn: Brain, mind, experience, and school. (2001). Washington, DC: The National Academies Press.Google Scholar
California Health Care Foundation (2012). Final chapter: Californians' attitudes and experiences with death and dying. Available from http://www.chcf.org/publications/2012/02/final-chapter-death-dying.Google Scholar
Callahan, C.M., Kroenke, K., Counsell, S.R., et al. (2005). Treatment of depression improves physical functioning in older adults. Journal of the American Geriatrics Society, 53(3), 367–373.CrossRefGoogle ScholarPubMed
Callahan, C.M., Boustani, M.A., Unverzagt, F.W., et al. (2006). Effectiveness of collaborative care for older adults with Alzheimer's disease in primary care: A randomized controlled trial. The Journal of the American Medical Association, 295(18), 2148–2157.CrossRefGoogle ScholarPubMed
Coda Alliance (2015). The Go Wish Game: Welcome to Go Wish! Available from http://www.gowish.org/.Google Scholar
Cottingham, A.H., Alder, C., Austrom, M.G., et al. (2014). New workforce development in dementia care: Screening for “caring.” Preliminary data. Journal of the American Geriatrics Society, 62(7), 1364–1368.CrossRefGoogle ScholarPubMed
Counsell, S.R., Callahan, C.M., Clark, D.O., et al. (2007). Geriatric care management for low-income seniors: A randomized controlled trial. The Journal of the American Medical Association, 298(22), 2623–2633.CrossRefGoogle ScholarPubMed
Counsell, S.R., Callahan, C.M., Tu, W., et al. (2009). Cost analysis of the Geriatric Resources for Assessment and Care of Elders care management intervention. Journal of the American Geriatrics Society, 57(8), 1420–1426.CrossRefGoogle ScholarPubMed
Crabtree, B.F. & Miller, M. (eds.) (1999). Doing qualitative research: Methods for primary care. Thousand Oaks, CA: Sage.Google Scholar
Department of Health (2008). End-of-life care strategy: Promoting high-quality care for all adults at the end of life. Available from http://webarchive.nationalarchives.gov.uk/20130107105354/http://:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277.Google Scholar
Detering, K.M., Hancock, A.D., Reade, M.C., et al. (2010). The impact of advance care planning on end-of-life care in elderly patients: Randomised controlled trial. British Medical Journal, 340, c1345.CrossRefGoogle ScholarPubMed
de Vleminck, A., Pardon, K., Beernaert, K., et al. (2014). Barriers to advance care planning in cancer, heart failure and dementia patients: A focus group study on general practitioners' views and experiences. PLoS One, 9(1), e84905.CrossRefGoogle Scholar
Earle, C.C., Neville, B.A., Landrum, M.B., et al. (2004). Trends in the aggressiveness of cancer care near the end of life. Journal of Clinical Oncology, 22(2), 315–321.CrossRefGoogle ScholarPubMed
Glaser, B.G. & Strauss, A.L. (2009). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing.Google Scholar
Gott, M., Gardiner, C., Small, N., et al. (2009). Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine, 23(7), 642–648.CrossRefGoogle ScholarPubMed
Greutmann, M., Tobler, D., Colman, J.M., et al. (2013). Facilitators of and barriers to advance care planning in adult congenital heart disease. Congenital Heart Disease, 8(4), 281–288.CrossRefGoogle ScholarPubMed
Heyland, D.K., Barwich, D., Pichora, D., et al. (2013). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Internal Medicine, 173(9), 778–787.CrossRefGoogle ScholarPubMed
Horsman, J., Furlong, W., Feeny, D., et al. (2003). The Health Utilities Index (HUI): Concepts, measurement properties and applications. Health and Quality of Life Outcomes, 1, 54.CrossRefGoogle ScholarPubMed
Institute for Healthcare Improvement (2015). The Conversation Project: Introduction. Welcome to the conversation-starter kit. Available from http://theconversationproject.org/starter-kit/intro.Google Scholar
Institute of Medicine (IOM) (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.Google Scholar
Johnston, S.C., Pfeifer, M.P. & McNutt, R. (1995). The discussion about advance directives: Patient and physician opinions regarding when and how it should be conducted. End-of-Life Study Group. Archives of Internal Medicine, 155(10), 1025–1030.CrossRefGoogle ScholarPubMed
Katon, W.J., Schoenbaum, M., Fan, M.Y., et al. (2005). Cost-effectiveness of improving primary care treatment of late-life depression. Archives of General Psychiatry, 62(12), 1313–1320.CrossRefGoogle ScholarPubMed
Keating, N.L., Landrum, M.B., Rogers, S.O., et al. (2010). Physician factors associated with discussions about end-of-life care. Cancer, 116(4), 998–1006.CrossRefGoogle ScholarPubMed
Kirolos, I., Tamariz, L., Schultz, E.A., et al. (2014). Interventions to improve hospice and palliative care referral: A systematic review. Journal of Palliative Medicine, 17(8), 957–964.CrossRefGoogle ScholarPubMed
Kroenke, K. & Spitzer, R.L. (2002). The PHQ–9: A new depression diagnostic and severity measure. Psychiatric Annals, 32(9), 1–7.CrossRefGoogle Scholar
Morrison, R.S. (2013). Research priorities in geriatric palliative care: An introduction to a new series. Journal of Palliative Medicine, 16(7), 726–729.CrossRefGoogle ScholarPubMed
Nelson, J.E., Gay, E.B., Berman, A.R., et al. (2011). Patients rate physician communication about lung cancer. Cancer, 117(22), 5212–5220.CrossRefGoogle ScholarPubMed
Pardon, K., Deschepper, R., Vander Stichele, R., et al. (2012). Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: A multicenter study in 13 hospitals in Flanders, Belgium. Journal of Pain and Symptom Management, 43(3), 515–526.CrossRefGoogle ScholarPubMed
Patel, R.V., Sinuff, T. & Cook, D.J. (2004). Influencing advance directive completion rates in non-terminally ill patients: A systematic review. Journal of Critical Care, 19(1), 1–9.CrossRefGoogle ScholarPubMed
Pew Research Center (2006). Strong public support for right to die: More Americans discussing and planning end-of-life treatment. Available from http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die/.Google Scholar
Shalowitz, D.I., Garrett-Mayer, E. & Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5), 493–497.CrossRefGoogle ScholarPubMed
Sherbourne, C.D. & Stewart, A.L. (1991). The MOS social support survey. Social Science & Medicine, 32(6), 705–714.CrossRefGoogle ScholarPubMed
Silveira, M.J., Kim, S.Y. & Langa, K.M. (2010). Advance directives and outcomes of surrogate decision making before death. The New England Journal of Medicine, 362(13), 1211–1218.CrossRefGoogle ScholarPubMed
Spitzer, R.L., Kroenke, K., Williams, J.B., et al. (2006). A brief measure for assessing generalized anxiety disorder: The GAD–7. Archives of Internal Medicine, 166(10), 1092–1097.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. The Journal of the American Medical Association, 284(19), 2476–2482.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. Journal of Pain and Symptom Management, 22(3), 727–737.CrossRefGoogle ScholarPubMed
Tobler, D., Greutmann, M., Colman, J.M., et al. (2012). Knowledge of and preference for advance care planning by adults with congenital heart disease. The American Journal of Cardiology, 109(12), 1797–1800.CrossRefGoogle ScholarPubMed
Tulsky, J.A., Fischer, G.S., Rose, M.R., et al. (1998). Opening the black box: How do physicians communicate about advance directives? Annals of Internal Medicine, 129(6), 441–449.CrossRefGoogle ScholarPubMed
Unutzer, J., Katon, W., Callahan, C.M., et al. (2002). Collaborative care management of late-life depression in the primary care setting: A randomized controlled trial. The Journal of the American Medical Association, 288(22), 2836–2845.CrossRefGoogle ScholarPubMed
Working Group on Health Outcomes for Older Persons with Multiple Chronic Conditions (2012). Universal health outcome measures for older persons with multiple chronic conditions. Journal of the American Geriatrics Society, 60(12), 2333.Google Scholar
Wright, A.A., Zhang, B., Keating, N.L., et al. (2014). Associations between palliative chemotherapy and adult cancer patients' end-of-life care and place of death: Prospective cohort study. British Medical Journal, 348, g1219.CrossRefGoogle ScholarPubMed