##common.pageHeaderLogo.altText##

Review article: Biomedical intelligence

Vol. 150 No. 3738 (2020)

Communication challenges in end-of-life decisions

Cite this as:
Swiss Med Wkly. 2020;150:w20351
Published
18.09.2020

Summary

With the progress in healthcare over recent decades and a growing life expectancy, discussions and decisions regarding end-of-life issues have become increasingly important. Especially in intensive care and emergency medicine there is a growing need of decision making for optimised end-of-life care. Prolonging life and preventing death is considered to be the highest principle of healthcare professionals; however, in some cases alleviation of suffering is a more appropriate goal. This article discusses communication challenges in end-of-life decision making and outlines strategies from an area of growing interest and research.

References

  1. Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):102. doi:.https://doi.org/10.1186/s12916-017-0860-2
  2. You JJ, Dodek P, Lamontagne F, Downar J, Sinuff T, Jiang X, et al.; ACCEPT Study Team and the Canadian Researchers at the End of Life Network (CARENET). What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ. 2014;186(18):E679–87. doi:.https://doi.org/10.1503/cmaj.140673
  3. Becker C, Künzli N, Perrig S, Beck K, Vincent A, Widmer M, et al. Code status discussions in medical inpatients: results of a survey of patients and physicians. Swiss Med Wkly. 2020;150:w20194.
  4. Krawczyk M, Gallagher R. Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members. BMC Palliat Care. 2016;15(1):59. doi:.https://doi.org/10.1186/s12904-016-0133-4
  5. Jones GK, Brewer KL, Garrison HG. Public expectations of survival following cardiopulmonary resuscitation. Acad Emerg Med. 2000;7(1):48–53. doi:.https://doi.org/10.1111/j.1553-2712.2000.tb01891.x
  6. Weeks JC, Cook EF, O’Day SJ, Peterson LM, Wenger N, Reding D, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA. 1998;279(21):1709–14. doi:.https://doi.org/10.1001/jama.279.21.1709
  7. Hancock K, Clayton JM, Parker SM, Wal der S, Butow PN, Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21(6):507–17. doi:.https://doi.org/10.1177/0269216307080823
  8. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med. 2004;164(18):1999–2004. doi:.https://doi.org/10.1001/archinte.164.18.1999
  9. Covinsky KE, Fuller JD, Yaffe K, Johnston CB, Hamel MB, Lynn J, et al.; The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Communication and decision-making in seriously ill patients: findings of the SUPPORT project. J Am Geriatr Soc. 2000;48(S1, Suppl):S187–93. doi:.https://doi.org/10.1111/j.1532-5415.2000.tb03131.x
  10. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians communicate about advance directives? Ann Intern Med. 1998;129(6):441–9. doi:.https://doi.org/10.7326/0003-4819-129-6-199809150-00003
  11. Walczak A, Butow PN, Bu S, Clayton JM. A systematic review of evidence for end-of-life communication interventions: Who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99(1):3–16. Published online September 26, 2015. doi:.https://doi.org/10.1016/j.pec.2015.08.017
  12. Cegala DJ, Lenzmeier Broz S. Physician communication skills training: a review of theoretical backgrounds, objectives and skills. Med Educ. 2002;36(11):1004–16. doi:.https://doi.org/10.1046/j.1365-2923.2002.01331.x
  13. Visser M, Deliens L, Houttekier D. Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review. Crit Care. 2014;18(6):604. doi:.https://doi.org/10.1186/s13054-014-0604-z
  14. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. 2005;127(6):2188–96. doi:.https://doi.org/10.1378/chest.127.6.2188
  15. Momen NC, Barclay SI. Addressing ‘the elephant on the table’: barriers to end of life care conversations in heart failure - a literature review and narrative synthesis. Curr Opin Support Palliat Care. 2011;5(4):312–6. doi:.https://doi.org/10.1097/SPC.0b013e32834b8c4d
  16. Deep KS, Griffith CH, Wilson JF. Communication and decision making about life-sustaining treatment: examining the experiences of resident physicians and seriously-ill hospitalized patients. J Gen Intern Med. 2008;23(11):1877–82. doi:.https://doi.org/10.1007/s11606-008-0779-6
  17. Siegrist V, Eken C, Nickel CH, Mata R, Hertwig R, Bingisser R. End-of-life decisions in emergency patients: prevalence, outcome and physician effect. QJM. 2018;111(8):549–54. doi:.https://doi.org/10.1093/qjmed/hcy112
  18. Figg WD, Smith EK, Price DK, English BC, Thurman PW, Steinberg SM, et al. Disclosing a diagnosis of cancer: where and how does it occur? J Clin Oncol. 2010;28(22):3630–5. doi:.https://doi.org/10.1200/JCO.2009.24.6389
  19. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–11. doi:.https://doi.org/10.1634/theoncologist.5-4-302
  20. Pollak KI, Arnold RM, Jeffreys AS, Alexander SC, Olsen MK, Abernethy AP, et al. Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748–52. doi:.https://doi.org/10.1200/JCO.2007.12.4180
  21. Razavi D, Merckaert I, Marchal S, Libert Y, Conradt S, Boniver J, et al. How to optimize physicians’ communication skills in cancer care: results of a randomized study assessing the usefulness of posttraining consolidation workshops. J Clin Oncol. 2003;21(16):3141–9. doi:.https://doi.org/10.1200/JCO.2003.08.031
  22. Giroldi E, Veldhuijzen W, Leijten C, Welter D, van der Weijden T, Muris J, et al. ‘No need to worry’: an exploration of general practitioners’ reassuring strategies. BMC Fam Pract. 2014;15(1):133. doi:.https://doi.org/10.1186/1471-2296-15-133
  23. Metzger K, Gamp M, Tondorf T, Hochstrasser S, Becker C, Luescher T, et al. Depression and anxiety in relatives of out-of-hospital cardiac arrest patients: Results of a prospective observational study. J Crit Care. 2019;51:57–63. doi:.https://doi.org/10.1016/j.jcrc.2019.01.026
  24. Pochard F, Azoulay E, Chevret S, Lemaire F, Hubert P, Canoui P, et al.; French FAMIREA Group. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10):1893–7. doi:.https://doi.org/10.1097/00003246-200110000-00007
  25. Kentish-Barnes N, Chaize M, Seegers V, Legriel S, Cariou A, Jaber S, et al. Complicated grief after death of a relative in the intensive care unit. Eur Respir J. 2015;45(5):1341–52. doi:.https://doi.org/10.1183/09031936.00160014
  26. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al.; FAMIREA Study Group. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94. doi:.https://doi.org/10.1164/rccm.200409-1295OC
  27. Zimmerli M, Tisljar K, Balestra GM, Langewitz W, Marsch S, Hunziker S. Prevalence and risk factors for post-traumatic stress disorder in relatives of out-of-hospital cardiac arrest patients. Resuscitation. 2014;85(6):801–8. doi:.https://doi.org/10.1016/j.resuscitation.2014.02.022
  28. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469–78. doi:.https://doi.org/10.1056/NEJMoa063446
  29. Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001;29(2, Suppl):N26–33. doi:.https://doi.org/10.1097/00003246-200102001-00006
  30. Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844–9. doi:.https://doi.org/10.1164/rccm.200409-1267OC
  31. Sykes N. End of life issues. Eur J Cancer. 2008;44(8):1157–62. doi:.https://doi.org/10.1016/j.ejca.2008.02.035
  32. Gauthier DM, Swigart VA. The contextual nature of decision making near the end of life: hospice patients’ perspectives. Am J Hosp Palliat Care. 2003;20(2):121–8. doi:.https://doi.org/10.1177/104990910302000210
  33. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340(mar23 1):c1345. doi:.https://doi.org/10.1136/bmj.c1345
  34. Michiels E, Deschepper R, Van Der Kelen G, Bernheim JL, Mortier F, Vander Stichele R, et al. The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin. Palliat Med. 2007;21(5):409–15. doi:.https://doi.org/10.1177/0269216307078503
  35. Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care setting: what do we need for success? J Am Geriatr Soc. 2007;55(2):277–83. doi:.https://doi.org/10.1111/j.1532-5415.2007.01065.x
  36. Tung EE, North F. Advance care planning in the primary care setting: a comparison of attending staff and resident barriers. Am J Hosp Palliat Care. 2009;26(6):456–63. doi:.https://doi.org/10.1177/1049909109341871
  37. Emanuel LL. Advance directives. Annu Rev Med. 2008;59(1):187–98. doi:.https://doi.org/10.1146/annurev.med.58.072905.062804
  38. Vilpert S, Borrat-Besson C, Maurer J, Borasio GD. Awareness, approval and completion of advance directives in older adults in Switzerland. Swiss Med Wkly. 2018;148:w14642. doi:.https://doi.org/10.4414/smw.2018.14642
  39. Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LA, Moss AH. Failure of advance care planning to elicit patients’ preferences for withdrawal from dialysis. Am J Kidney Dis. 1999;33(4):688–93. doi:.https://doi.org/10.1016/S0272-6386(99)70220-9
  40. Teno JM, Licks S, Lynn J, Wenger N, Connors AF, Jr, Phillips RS, et al.; Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Do advance directives provide instructions that direct care? SUPPORT Investigators. J Am Geriatr Soc. 1997;45(4):508–12. doi:.https://doi.org/10.1111/j.1532-5415.1997.tb05179.x
  41. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25. doi:.https://doi.org/10.1177/0269216314526272
  42. Fromme EK, Zive D, Schmidt TA, Olszewski E, Tolle SW. POLST Registry do-not-resuscitate orders and other patient treatment preferences. JAMA. 2012;307(1):34–5. doi:.https://doi.org/10.1001/jama.2011.1956
  43. Field RA, Fritz Z, Baker A, Grove A, Perkins GD. Systematic review of interventions to improve appropriate use and outcomes associated with do-not-attempt-cardiopulmonary-resuscitation decisions. Resuscitation. 2014;85(11):1418–31. doi:.https://doi.org/10.1016/j.resuscitation.2014.08.024
  44. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:CD001431. doi:.https://doi.org/10.1002/14651858.CD001431.pub5
  45. Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med. 2014;161(6):408–18. doi:.https://doi.org/10.7326/M14-0644
  46. Becker C, Lecheler L, Hochstrasser S, Metzger KA, Widmer M, Thommen EB, et al. Association of Communication Interventions to Discuss Code Status With Patient Decisions for Do-Not-Resuscitate Orders: A Systematic Review and Meta-analysis. JAMA Netw Open. 2019;2(6):e195033. doi:.https://doi.org/10.1001/jamanetworkopen.2019.5033
  47. Huynh TN, Kleerup EC, Wiley JF, Savitsky TD, Guse D, Garber BJ, et al. The frequency and cost of treatment perceived to be futile in critical care. JAMA Intern Med. 2013;173(20):1887–94. doi:.https://doi.org/10.1001/jamainternmed.2013.10261
  48. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med. 1990;112(12):949–54. doi:.https://doi.org/10.7326/0003-4819-112-12-949
  49. Barjaktarevic I, Bobe L, Klapholz A, Dinan W. Multiple Cardiopulmonary Resuscitation Attempts in a Community Hospital: Evaluation of the Futility Assessment. Am J Hosp Palliat Care. 2015;32(5):504–9. doi:.https://doi.org/10.1177/1049909114525258
  50. Perkins GD, Griffiths F, Slowther AM, George R, Fritz Z, Satherley P, et al. Do-not-attempt-cardiopulmonary-resuscitation decisions: an evidence synthesis. Southampton (UK): NIHR Journals Library; 2016.
  51. Truog RD, White DB. Futile treatments in intensive care units. JAMA Intern Med. 2013;173(20):1894–5. doi:.https://doi.org/10.1001/jamainternmed.2013.7098
  52. Simon JR, Kraus C, Rosenberg M, Wang DH, Clayborne EP, Derse AR. “Futile Care”-An Emergency Medicine Approach: Ethical and Legal Considerations. Ann Emerg Med. 2017;70(5):707–13. doi:.https://doi.org/10.1016/j.annemergmed.2017.06.005
  53. Curtis JR, Park DR, Krone MR, Pearlman RA. Use of the medical futility rationale in do-not-attempt-resuscitation orders. JAMA. 1995;273(2):124–8. doi:.https://doi.org/10.1001/jama.1995.03520260046031
  54. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med. 1992;326(23):1560–4. doi:.https://doi.org/10.1056/NEJM199206043262310
  55. Saltbaek L, Michelsen HM, Nelausen KM, Gut R, Nielsen DL. Old age and poor prognosis increase the likelihood of disagreement between cancer patients and their oncologists on the indication for resuscitation attempt. Support Care Cancer. 2013;21(12):3363–70. doi:.https://doi.org/10.1007/s00520-013-1916-2
  56. Osinski A, Vreugdenhil G, de Koning J, van der Hoeven JG. Do-not-resuscitate orders in cancer patients: a review of literature. Support Care Cancer. 2017;25(2):677–85. doi:.https://doi.org/10.1007/s00520-016-3459-9
  57. Reisfield GM, Wallace SK, Munsell MF, Webb FJ, Alvarez ER, Wilson GR. Survival in cancer patients undergoing in-hospital cardiopulmonary resuscitation: a meta-analysis. Resuscitation. 2006;71(2):152–60. doi:.https://doi.org/10.1016/j.resuscitation.2006.02.022
  58. Ebell MH, Afonso AM. Pre-arrest predictors of failure to survive after in-hospital cardiopulmonary resuscitation: a meta-analysis. Fam Pract. 2011;28(5):505–15. doi:.https://doi.org/10.1093/fampra/cmr023
  59. Girotra S, Nallamothu BK, Spertus JA, Li Y, Krumholz HM, Chan PS ; American Heart Association Get with the Guidelines–Resuscitation Investigators. Trends in survival after in-hospital cardiac arrest. N Engl J Med. 2012;367(20):1912–20. doi:.https://doi.org/10.1056/NEJMoa1109148
  60. Young GB. Clinical practice. Neurologic prognosis after cardiac arrest. N Engl J Med. 2009;361(6):605–11. doi:.https://doi.org/10.1056/NEJMcp0903466
  61. George AL, Jr, Folk BP, 3rd, Crecelius PL, Campbell WB. Pre-arrest morbidity and other correlates of survival after in-hospital cardiopulmonary arrest. Am J Med. 1989;87(1):28–34. doi:.https://doi.org/10.1016/S0002-9343(89)80479-6
  62. Ebell MH. Prearrest predictors of survival following in-hospital cardiopulmonary resuscitation: a meta-analysis. J Fam Pract. 1992;34(5):551–8.
  63. Bowker L, Stewart K. Predicting unsuccessful cardiopulmonary resuscitation (CPR): a comparison of three morbidity scores. Resuscitation. 1999;40(2):89–95. doi:.https://doi.org/10.1016/S0300-9572(99)00008-8
  64. O’Keeffe S, Ebell MH. Prediction of failure to survive following in-hospital cardiopulmonary resuscitation: comparison of two predictive instruments. Resuscitation. 1994;28(1):21–5. doi:.https://doi.org/10.1016/0300-9572(94)90050-7
  65. Piscator E, Göransson K, Bruchfeld S, Hammar U, El Gharbi S, Ebell M, et al. Predicting neurologically intact survival after in-hospital cardiac arrest-external validation of the Good Outcome Following Attempted Resuscitation score. Resuscitation. 2018;128:63–9. doi:.https://doi.org/10.1016/j.resuscitation.2018.04.035
  66. Ebell MH, Jang W, Shen Y, Geocadin RG ; Get With the Guidelines–Resuscitation Investigators. Development and validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) score to predict neurologically intact survival after in-hospital cardiopulmonary resuscitation. JAMA Intern Med. 2013;173(20):1872–8. doi:.https://doi.org/10.1001/jamainternmed.2013.10037
  67. Thai TN, Ebell MH. Prospective validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) score for in-hospital cardiac arrest prognosis. Resuscitation. 2019;140:2–8. doi:.https://doi.org/10.1016/j.resuscitation.2019.05.002
  68. Rubins JB, Kinzie SD, Rubins DM. Predicting Outcomes of In-Hospital Cardiac Arrest: Retrospective US Validation of the Good Outcome Following Attempted Resuscitation Score. J Gen Intern Med. 2019;34(11):2530–5. doi:.https://doi.org/10.1007/s11606-019-05314-x
  69. Ohlsson MA, Kennedy LM, Ebell MH, Juhlin T, Melander O. Validation of the good outcome following attempted resuscitation score on in-hospital cardiac arrest in southern Sweden. Int J Cardiol. 2016;221:294–7. doi:.https://doi.org/10.1016/j.ijcard.2016.06.146
  70. Piscator E, Göransson K, Forsberg S, Bottai M, Ebell M, Herlitz J, et al. Prearrest prediction of favourable neurological survival following in-hospital cardiac arrest: The Prediction of outcome for In-Hospital Cardiac Arrest (PIHCA) score. Resuscitation. 2019;143:92–9. doi:.https://doi.org/10.1016/j.resuscitation.2019.08.010