Community perspectives of end-of-life preparedness

References

• Almack, K., Cox, K., Moghaddam, N., Pollock, K., & Seymour, J. (2012). After you: Conversations between patients and healthcare professionals in planning for end of life care. BMC Palliative Care, 11(1), 15. doi:10.1186/1472-684X-11-15
   PubMedGoogle Scholar
• Barclay, S., Momen, N., Case-Upton, S., Kuhn, I., & Smith, E. (2011). End-of-life care conversations with heart failure patients: A systematic literature review and narrative synthesis. British Journal of General Practice, 61(582), e49–e62. doi:10.3399/bjgp11x549018
   PubMed Web of Science ®Google Scholar
• Bernacki, R. E., & Block, S. D. (2014). Communication about serious illness care goals: A review and synthesis of best practices. JAMA Internal Medicine, 174(12), 1994–2003. doi:10.1001/jamainternmed.2014.5271
   PubMed Web of Science ®Google Scholar
• Bloomer, M., Tan, H., & Lee, S. (2010). End of life care: The importance of advance care planning. Australian Family Physician, 39(10), 734.
   PubMed Web of Science ®Google Scholar
• Brighton, L. J., & Bristowe, K. (2016). Communication in palliative care: Talking about the end of life, before the end of life. Postgraduate Medical Journal, 92(1090), 466–470. doi:10.1136/postgradmedj-2015-133368
   PubMed Web of Science ®Google Scholar
• Brinkman-Stoppelenburg, A., Rietjens, J. A., & van der Heide, A. (2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), 1000–1025. doi:10.1177/0269216314526272
   PubMed Web of Science ®Google Scholar
• Carstairs, S. (2010). Raising the bar: A roadmap for the future of palliative care in Canada. Senate of Canada. Retrieved from http://www.chpca.net/media/7859/Raising_the_Bar_June_2010.pdf
   Google Scholar
• Collier, R. (2011). Access to palliative care varies widely across Canada. Canadian Medical Association Journal, 183(2), E87–E88. doi:10.1503/cmaj.109-3763
   Web of Science ®Google Scholar
• Dempsey, D. (2014). Advance care planning: Taking time now will save time later. Nursing & Residential Care, 16(5), 269–272. doi:10.12968/nrec.2014.16.5.269
   Google Scholar
• Dickinson, C., Bamford, C., Exley, C., Emmett, C., Hughes, J., & Robinson, L. (2013). Planning for tomorrow whilst living for today: The views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25(12), 2011–2021. doi:10.1017/S1041610213001531
   PubMed Web of Science ®Google Scholar
• Dunlay, S. M., Swetz, K. M., Mueller, P. S., & Roger, V. L. (2012). Advance directives in community patients with heart failure. Circulation: Cardiovascular Quality and Outcomes, 5(3), 283–289. doi:10.1161/CIRCOUTCOMES.112.966036
   PubMed Web of Science ®Google Scholar
• Fang, M. L., Sixsmith, J., Sinclair, S., & Horst, G. (2016). A knowledge synthesis of culturally-and spiritually-sensitive end-of-life care: Findings from a scoping review. BMC Geriatrics, 16(1), 107. doi:10.1186/s12877-016-0282-6
   PubMedGoogle Scholar
• Feely, M. A., Hildebrandt, D., Varayil, J. E., & Mueller, P. S. (2016). Prevalence and contents of advance directives of patients with ESRD receiving dialysis. Clinical Journal of the American Society of Nephrology, 11(12), CJN-12131115. doi:10.2215/​CJN.12131115
   Web of Science ®Google Scholar
• Flaskerud, J. H. (2011). End-of-life preparation: Advance care planning. Issues in Mental Health Nursing, 32(11), 720–722. doi:10.3109/01612840.2011.578786
   PubMedGoogle Scholar
• Fowler, R., & Hammer, M. (2013). End-of-life care in Canada. Clinical & Investigative Medicine, 36(3), 127–132.
   Web of Science ®Google Scholar
• Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. Thousand Oaks, CA: Sage Publications, Inc.
   Google Scholar
• Hammes, B. J., & Rooney, B. L. (1998). Death and end-of-life planning in one midwestern community. Archives of Internal Medicine, 158(4), 383–390.
   PubMedGoogle Scholar
• Heyland, D. K., Barwich, D., Pichora, D., Dodek, P., Lamontagne, F., You, J. J., … Canadian Researchers at the End of Life Network (CARENET). (2013). Failure to engage hospitalized elderly patients and their families in advance care planning. Journal of the American Medical Association Internal Medicine, 173(9), 778–787. doi:10.1001/jamainternmed.2013.180
   Google Scholar
• Howard, M., Bernard, C., Tan, A., Slaven, M., Klein, D., & Heyland, D. K. (2015). Advance care planning: Let’s start sooner. Canadian Family Physician, 61(8), 663–665.
   PubMed Web of Science ®Google Scholar
• Hutchison, L. A., Raffin-Bouchal, D. S., Syme, C. A., Biondo, P. D., & Simon, J. E. (2017). Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers. Chronic Illness, 13(3), 1742395316675023. http://journals.sagepub.com/doi/full/10.1177/1742395316675023
   PubMed Web of Science ®Google Scholar
• Kelly, C. M., Masters, J. L., & DeViney, S. (2013). End-of-life planning activities: An integrated process. Death Studies, 37(6), 529–551. doi:10.1080/07481187.2011.653081
   PubMed Web of Science ®Google Scholar
• Kudo, S., Mutisya, E., & Nagao, M. (2015). Population aging: An emerging research Agenda for sustainable development. Social Sciences, 4(4), 940–966. doi:10.3390/socsci4040940
   Google Scholar
• Larson, D. G., & Tobin, D. R. (2000). End-of-life conversations: Evolving practice and theory. Journal of the American Medical Association, 284(12), 1573–1578. doi:10.1001/jama.284.12.1573
   PubMed Web of Science ®Google Scholar
• Leung, J. M., Udris, E. M., Uman, J., & Au, D. H. (2012). The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. CHEST Journal, 142(1), 128–133. doi:10.1378/chest.11-2222
   PubMed Web of Science ®Google Scholar
• Llewellyn, R., Jaye, C., Egan, R., Cunningham, W., Young, J., & Radue, P. (2016). Cracking open death: Death conversations in primary care. Journal of Primary Health Care, 8(4), 303–311. doi:10.1071/HC15058
   PubMed Web of Science ®Google Scholar
• Lopez-Acevedo, M., Havrilesky, L. J., Broadwater, G., Kamal, A. H., Abernethy, A. P., Berchuck, A., … Lee, P. S. (2013). Timing of end-of-life care discussion with performance on end-of-life quality indicators in ovarian cancer. Gynecologic Oncology, 130(1), 156–161. doi:10.1016/j.ygyno.2013.04.010
   PubMed Web of Science ®Google Scholar
• Mack, J. W., Cronin, A., Taback, N., Huskamp, H. A., Keating, N. L., Malin, J. L., … Weeks, J. C. (2012). End-of-life care discussions among patients with advanced cancer: A cohort study. Annals of Internal Medicine, 156(3), 204–210. doi:10.7326/0003-4819-156-3-201202070-00008
   PubMed Web of Science ®Google Scholar
• McLennan, V. E., Boddy, J. H., Daly, M. G., & Chenoweth, L. M. (2015). Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning. Australian Health Review, 39(5), 528–532. doi:10.1071/AH14152
   PubMed Web of Science ®Google Scholar
• McLeod‐Sordjan, R. (2014). Death preparedness: A concept analysis. Journal of Advanced Nursing, 70(5), 1008–1019. doi:10.1111/jan.12252
   PubMed Web of Science ®Google Scholar
• Milne, J., & Oberle, K. (2005). Enhancing rigor in qualitative description. Journal of Wound Ostomy & Continence Nursing, 32(6), 413–420.
   PubMed Web of Science ®Google Scholar
• Momen, N. C., & Barclay, S. I. (2011). Addressing ‘the elephant on the table’: Barriers to end of life care conversations in heart failure – A literature review and narrative synthesis. Current Opinion in Supportive and Palliative Care, 5(4), 312–316. doi:10.1097/SPC.0b013e32834b8c4d
   PubMedGoogle Scholar
• Moorman, S. M., & Inoue, M. (2013). Predicting a partner’s end‐of‐life preferences, or substituting one’s own? Journal of Marriage and Family, 75(3), 734–745. doi:10.1111/jomf.12030
   Web of Science ®Google Scholar
• Morse, J. M. (2000). Determining sample size. Qualitative Health Research, 10(1), 3–5. http://journals.sagepub.com/doi/pdf/10.1177/104973200129118183
   Web of Science ®Google Scholar
• Neergaard, M. A., Olesen, F., Andersen, R. S., & Sondergaard, J. (2009). Qualitative description–The poor cousin of health research? BMC Medical Research Methodology, 9(1), 52. doi 10.1186/1471-2288-9-52
   PubMed Web of Science ®Google Scholar
• Nogler, A. F. (2014). Hoping for the best, preparing for the worst: Strategies to promote honesty and prevent medical futility at end-of-life. Dimensions of Critical Care Nursing, 33(1), 22–27. doi:10.1097/DCC.0000000000000013
   PubMedGoogle Scholar
• Northern Health Authority. (n.d.). About us: Quick facts. Retrieved from https://northernhealth.ca/AboutUs/QuickFacts.aspx
   Google Scholar
• Periyakoil, V. S., Neri, E., & Kraemer, H. (2015). No easy talk: A mixed methods study of doctor reported barriers to conducting effective end-of-life conversations with diverse patients. PloS one, 10(4), e0122321.
   PubMed Web of Science ®Google Scholar
• Romanow, R. J. (2002). Building on values: The future of health care in Canada. Retrieved from http://publications.gc.ca/collections/Collection/CP32–85-2002E.pdf
   Google Scholar
• Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18(2), 179–183. doi:10.1002/nur.4770180211
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing & Health, 33(1), 77–84. doi:10.1002/nur.20362
   PubMed Web of Science ®Google Scholar
• Schickedanz, A. D., Schillinger, D., Landefeld, C. S., Knight, S. J., Williams, B. A., & Sudore, R. L. (2009). A clinical framework for improving the advance care planning process: Start with patients’ self‐identified barriers. Journal of the American Geriatrics Society, 57(1), 31–39. doi:10.1111/j.1532-5415.2008.02093.x
   PubMed Web of Science ®Google Scholar
• Scott, I. A., Mitchell, G. K., Reymond, E. J., & Daly, M. P. (2013). Difficult but necessary conversations—The case for advance care planning. The Medical Journal of Australia, 199(10), 662–666. doi:10.5694/mja13.10158
   PubMed Web of Science ®Google Scholar
• Simon, J., Porterfield, P., Bouchal, S. R., & Heyland, D. (2015). ‘Not yet’ and ‘just ask’: Barriers and facilitators to advance care planning—A qualitative descriptive study of the perspectives of seriously ill, older patients and their families. British Medical Journal Supportive & Palliative Care, 5(1), 54–62. doi:10.1136/bmjspcare-2013-000487
   PubMed Web of Science ®Google Scholar
• Singer, P. A., Martin, D. K., Lavery, J. V., Thiel, E. C., Kelner, M., & Mendelssohn, D. C. (1998). Reconceptualizing advance care planning from the patient’s perspective. Archives of Internal Medicine, 158(8), 879–884.
   PubMed Web of Science ®Google Scholar
• Teixeira, A. A., Hanvey, L., Tayler, C., Barwich, D., Baxter, S., & Heyland, D. K. (2015). What do Canadians think of advanced care planning? Findings from an online opinion poll. British Medical Journal Supportive & Palliative Care, 5(1), 40–47. doi:10.1136/bmjspcare-2013-000473
   PubMed Web of Science ®Google Scholar
• Tucker, T. (2009). Culture of death denial: Relevant or rhetoric in medical education? Journal of Palliative Medicine, 12(12), 1105–1108. doi:10.1089/jpm.2009.0234
   PubMed Web of Science ®Google Scholar
• Whellan, D. J., Goodlin, S. J., Dickinson, M. G., Heidenreich, P. A., Jaenicke, C., Stough, W. G., … & Heart Failure Society of America. (2014). End-of-life care in patients with heart failure. Journal of Cardiac Failure, 20(2), 121–134. doi:10.1016/j.cardfail.2013.12.003
   PubMed Web of Science ®Google Scholar
• Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., … Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association, 300(14), 1665–1673. doi:10.1001/jama.300.14.1665
   PubMed Web of Science ®Google Scholar
• Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E., Maciejewski, M. L., Earle, C. C., … Prigerson, H. G. (2009). Health care costs in the last week of life: Associations with end-of-life conversations. Archives of Internal Medicine, 169(5), 480–488. doi:10.1001/archinternmed.2008.587
   PubMedGoogle Scholar