In support of goals-of-care discussions in shared decision making – An extended response to the rejoinders
DOI:
https://doi.org/10.1558/cam.36373Keywords:
forum discussion, Lauris KaldjianAbstract
I am indebted to my colleagues – Larry Cripe and Richard Frankel, Martin Richards, Peter Scalia and Glyn Elwyn, and Angus Clarke – for the time they have taken to pose questions and offer comments that challenge and support my essay on the relationship between goals of care, concepts of health, and shared decision making (Kaldjian 2017). I am also grateful for the opportunity to respond (at some length!) to many of the issues raised, some of which are conceptual, some empirical, and some practical. Because most of the concerns relate to goals of care and shared decision making, it is to aspects of these topics that I will devote most of my attention.References
Back, A. L. (2017) What enables oncologists to discuss goals of care with their patients? Practical ways toward a culture of kindness, transparency, and responsibility. Journal of Oncology Practice 13 (9): 591–593. https://doi.org/10.1200/JOP.2017.026492
Back, A. L., Anderson, W. G., Bunch, L., Marr, L. A., Wallace, J. A., Yang, H. B. and Arnold, R. M. (2008) Communication about cancer near the end of life. Cancer 113 (7 suppl.): 1897–1920. https://doi.org/10.1002/cncr.23653
Back, A. L., Arnold, R. M., Baile, W. F., Fryer-Edwards, K. A., Alexander, S. C., Barley, G. E., Gooley, T. A. and Tulsky, J. A. (2007) Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine 167 (5): 453–460. https://doi.org/10.1001/archinte.167.5.453
Back, A. L., Michaelsen, K., Alexander, S., Hopley, E., Edwards, K. and Arnold, R. M. (2010) How oncology fellows discuss transitions in goals of care: A snapshot of approaches used prior to training. Journal of Palliative Medicine 13 (4): 395–400. https://doi.org/10.1089/jpm.2009.0249
Barger-Lux, M. J. and Heaney, R. P. (1986) For better and worse: The technological imperative in health care. Social Science and Medicine 22 (12): 1313–1320. https://doi.org/10.1016/0277-9536(86)90094-8
Bekelman, D. B., Johnson-Koenke, R., Ahluwalia, S. C., Walling, A. M., Peterson, J. and Sudore, R. L. (2017) Development and feasibility of a structured goals of care communication guide. Journal of Palliative Medicine 20 (9): 1004–1012. https://doi.org/10.1089/jpm.2016.0383
Bernacki, R. E., Block, S. D. and American College of Physicians High Value Care Task Force. (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Internal Medicine 174 (2): 1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271
Childers, J. W., Back, A. L., Tulsky, J. A. and Arnold, R. M. (2017) REMAP: A framework for goals of care conversations. Journal of Oncology Practice 13 (10): e844–e850. https://doi.org/10.1200/JOP.2016.018796
Cooper, Z., Koritsanszky, L. A., Cauley, C. E., Frydman, J. L., Bernacki, R. E., Mosenthal, A. C., Gawande, A. A. and Block, S. D. (2016) Recommendations for best communication practices to facilitate goal-concordant care for seriously ill older patients with emergency surgical conditions. Annals of Surgery 263 (1): 1–6. https://doi.org/10.1097/SLA.0000000000001491
Cummings, A., Lund, S., Campling, N., May, C. R., Richardson, A. and Myall, M. (2017) Implementing communication and decision-making interventions directed at goals of care: A theory-led scoping review. BMJ Open 7 (10): e017056. https://doi.org/10.1136/bmjopen-2017-017056
Dougherty, C. M., Coats, H. L. and Curtis, J. R. (2017) Development and testing of a goals of care intervention in advanced heart failure. Applied Nursing Research 38: 99–106. https://doi.org/10.1016/j.apnr.2017.09.017
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, M. (2012) Shared decision making: A model for clinical practice. Journal of General Internal Medicine 27 (10): 1361–1367. https://doi.org/10.1007/s11606-012-2077-6
Evans, W. G., Tulsky, J. A., Back, A. L. and Arnold, R. M. (2006) Communication at times of transitions: How to help patients cope with loss and re-define hope. Cancer Journal 12 (5): 417–424. https://doi.org/10.1097/00130404-200609000-00010
Frey, M. K., Ellis, A. E., Koontz, L. M., Shyne, S., Klingenberg, B., Fields, J. C., Chern, J-Y. and Blank, S. V. (2017) Ovarian cancer survivors’ acceptance of treatment side effects evolves as goals of care change over the cancer continuum. Gynecologic Oncology 146 (2): 386–391. https://doi.org/10.1016/j.ygyno.2017.05.029
Hanson, L. C. and Winzelberg, G. (2013) Research priorities for geriatric palliative care: goals, values, and preferences. Journal of Palliative Medicine 16 (10): 1175–1179. https://doi.org/10.1089/jpm.2013.9475
Hanson, L. C., Zimmerman, S., Song, M.-K., Lin, F.-C., Rosemond, C., Carey, T. S. and Mitchell, S. L. (2017) Effect of the goals of care intervention for advanced dementia: A randomized clinical trial. JAMA Internal Medicine 177 (1): 24–31. https://doi.org/10.1001/jamainternmed.2016.7031
Hill, D. L., Miller, V., Walter, J. K., Carroll, K. W., Morrison, W. E., Munson, D. A., Kang, T. I., Hinds, P. S. and Feudtner, C. (2014) Regoaling: A conceptual model of how parents of children with serious illness change medical care goals. BMC Palliative Care 13: Art. 9. https://doi.org/10.1186/1472-684X-13-9
Holm, S. (2010). Euthanasia: agreeing to disagree? Medicine, Health Care and Philosophy 13 (4): 399–402. https://doi.org/10.1007/s11019-010-9264-1
Kaldjian, L. C. (2014) Practicing Medicine and Ethics: Integrating Wisdom, Conscience, and Goals of Care. New York: Cambridge University Press. https://doi.org/10.1017/CBO9780511997891
Kaldjian, L. C. (2017) Concepts of health, ethics, and communication in shared decision making. Communication & Medicine 14 (1): 83–95. https://doi.org/10.1558/cam.32845
Kaldjian, L. C., Curtis, A. E., Shinkunas, L. A. and Cannon, K. T. (2009) Goals of care toward the end of life: A structured literature review. American Journal of Hospice and Palliative Medicine 25 (6): 501–511. https://doi.org/10.1177/1049909108328256
Kaldjian, L. C., Weir, R. F. and Duffy, T. P. (2005) A clinician’s approach to clinical ethical reasoning. Journal of General Internal Medicine 20 (3): 306–311. https://doi.org/10.1111/j.1525-1497.2005.40204.x
Kelly, B. J., Varghese, F. T. and Pelusi, D. (2003) Countertransference and ethics: A perspective on clinical dilemmas in end-of-life decisions. Palliative and Support Care 1 (4): 367–375. https://doi.org/10.1017/S1478951503030517
Levine, D. R., Johnson, L-M., Snyder, A., Wiser, R. K., Gibson, D., Kane, J. R. and Baker, J. N. (2016) Integrating palliative care in pediatric oncology: Evidence for an evolving paradigm for comprehensive cancer care. Journal of the National Comprehensive Cancer Network 14 (6): 741–748. https://doi.org/10.6004/jnccn.2016.0076
Liberman, T., Kozikowski, A., Kwon, N., Emmert, B., Akerman, M. and Pekmezaris, R. (2018) Identifying advanced illness patients in the emergency department and having goals-of-care discussions to assist with early hospice referral. Journal of Emergency Medicine 54 (2): 191–197. https://doi.org/10.1016/j.jemermed.2017.08.009
Mack, J. W., Weeks, J. C., Wright, A. A., Block, S. D. and Prigerson, H. G. (2010) End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology 28 (7): 1203–1208. https://doi.org/10.1200/JCO.2009.25.4672
Montgomery, K. (2006) How Doctors Think: Clinical Judgment and the Practice of Medicine. Oxford: Oxford University Press.
Myers, J., Cosby, R., Gzik, D., Harle, I., Harrold, D., Incardona, N. and Walton, T. (2018) Provider tools for advance care planning and goals of care discussion: A systematic review. American Journal of Hospice and Palliative. Online first: https://doi.org/10.1177/1049909118760303
Nenner, F. (2013) Goals of care: A family meeting. Journal of Palliative Medicine 16 (1): 103–104. https://doi.org/10.1089/jpm.2012.0251
Reinke, L. F., Engelberg, R. A., Shannon, S. E., Wenrich, M. D., Vig, E. K., Back, A. L. and Curtis, J. R. (2008) Transitions regarding palliative and end-of-life care in severe chronic obstructive lung disease or advanced cancer: Themes identified by patients, families, and clinicians. Journal of Palliative Medicine 11 (4): 601–609. https://doi.org/10.1089/jpm.2007.0236
Rosenberg, A. R., Dussel, V., Kang, T., Geyer, R., Gerhardt, C. A., Feudtner, C. and Wolfe, J. (2013) Psychological distress in parents of children with advanced cancer. JAMA Pediatrics 167 (6): 537–543. https://doi.org/10.1001/jamapediatrics.2013.628
Rosenberg, A. R., Orellana, L., Kang, T. I., Geyer, R., Feudtner, C., Dussel, V. and Wolfe, J. (2014) Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. Journal of Clinical Oncology 32 (27): 3005–3011. https://doi.org/10.1200/JCO.2014.55.4659
Rosenberg, A. R., Wolfe, J., Wiener, L., Lyon, M. and Feudtner, C. (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics 170: 1216–1223. https://doi.org/10.1001/jamapediatrics.2016.2142
Schulman-Green, D., Smith, C. B., Lin, J. J., Feder, S. and Bickell, N. A. (2018) Oncologists’ and patients’ perceptions of initial, intermediate, and final goals of care conversations. Journal of Pain and Symptom Management 55 (3): 890–896. https://doi.org/10.1016/j.jpainsymman.2017.09.024
Sinsky, C., Colligan, L., Li, L., Prgomet, M., Reynolds, S., Goeders, L., Westbrook, J., Tutty, M. and Blike, G. (2016). Allocation of physician time in ambulatory practice: A time and motion study in 4 specialties. Annals of Internal Medicine 165 (11): 753–760. https://doi.org/10.7326/M16-0961
Snaman, J. M., Kaye, E. C., Baker, J. N. and Wolfe, J. (2018) Pediatric palliative oncology: The state of the science and art of caring for children with cancer. Current Opinion in Pediatrics 30 (1): 40–48. https://doi.org/10.1097/MOP.0000000000000573
Stanek, S. (2017) Goals of care: A concept clarification. Journal of Advanced Nursing 73 (6): 1302–1314. https://doi.org/10.1111/jan.13243
Swetz, K. M., and Kamal, A. H. (2018) Palliative care. Annals of Internal Medicine 168 (5): ITC33–ITC48. https://doi.org/10.7326/AITC201803060
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson, V. A., Block, S. D., Maciejewski, P. K. and Prigerson, H.G. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement. Journal of the American Medical Association 300 (4): 1665–1673. https://doi.org/10.1001/jama.300.14.1665
You, J. H., Aleksova, N., Ducharme, A., Maciver, J., Mielniczuk, L., Fowler, R. A., Demers, C., Clarke, B., Parent, M.-C., Toma, M., Strachan, P. H., Farand, P., Isaac, D., Zieroth, S., Swinton, M., Jiang, X., Day, A. G., Heyland, D. K. and Ross, H. J. (2017) Barriers to goals of care discussions with patients who have advanced heart failure: Results of a multicentre survey of hospital-based cardiology clinicians. Journal of Cardiac Failure 23 (11): 786–793. https://doi.org/10.1016/j.cardfail.2017.06.003
Back, A. L., Anderson, W. G., Bunch, L., Marr, L. A., Wallace, J. A., Yang, H. B. and Arnold, R. M. (2008) Communication about cancer near the end of life. Cancer 113 (7 suppl.): 1897–1920. https://doi.org/10.1002/cncr.23653
Back, A. L., Arnold, R. M., Baile, W. F., Fryer-Edwards, K. A., Alexander, S. C., Barley, G. E., Gooley, T. A. and Tulsky, J. A. (2007) Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine 167 (5): 453–460. https://doi.org/10.1001/archinte.167.5.453
Back, A. L., Michaelsen, K., Alexander, S., Hopley, E., Edwards, K. and Arnold, R. M. (2010) How oncology fellows discuss transitions in goals of care: A snapshot of approaches used prior to training. Journal of Palliative Medicine 13 (4): 395–400. https://doi.org/10.1089/jpm.2009.0249
Barger-Lux, M. J. and Heaney, R. P. (1986) For better and worse: The technological imperative in health care. Social Science and Medicine 22 (12): 1313–1320. https://doi.org/10.1016/0277-9536(86)90094-8
Bekelman, D. B., Johnson-Koenke, R., Ahluwalia, S. C., Walling, A. M., Peterson, J. and Sudore, R. L. (2017) Development and feasibility of a structured goals of care communication guide. Journal of Palliative Medicine 20 (9): 1004–1012. https://doi.org/10.1089/jpm.2016.0383
Bernacki, R. E., Block, S. D. and American College of Physicians High Value Care Task Force. (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Internal Medicine 174 (2): 1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271
Childers, J. W., Back, A. L., Tulsky, J. A. and Arnold, R. M. (2017) REMAP: A framework for goals of care conversations. Journal of Oncology Practice 13 (10): e844–e850. https://doi.org/10.1200/JOP.2016.018796
Cooper, Z., Koritsanszky, L. A., Cauley, C. E., Frydman, J. L., Bernacki, R. E., Mosenthal, A. C., Gawande, A. A. and Block, S. D. (2016) Recommendations for best communication practices to facilitate goal-concordant care for seriously ill older patients with emergency surgical conditions. Annals of Surgery 263 (1): 1–6. https://doi.org/10.1097/SLA.0000000000001491
Cummings, A., Lund, S., Campling, N., May, C. R., Richardson, A. and Myall, M. (2017) Implementing communication and decision-making interventions directed at goals of care: A theory-led scoping review. BMJ Open 7 (10): e017056. https://doi.org/10.1136/bmjopen-2017-017056
Dougherty, C. M., Coats, H. L. and Curtis, J. R. (2017) Development and testing of a goals of care intervention in advanced heart failure. Applied Nursing Research 38: 99–106. https://doi.org/10.1016/j.apnr.2017.09.017
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, M. (2012) Shared decision making: A model for clinical practice. Journal of General Internal Medicine 27 (10): 1361–1367. https://doi.org/10.1007/s11606-012-2077-6
Evans, W. G., Tulsky, J. A., Back, A. L. and Arnold, R. M. (2006) Communication at times of transitions: How to help patients cope with loss and re-define hope. Cancer Journal 12 (5): 417–424. https://doi.org/10.1097/00130404-200609000-00010
Frey, M. K., Ellis, A. E., Koontz, L. M., Shyne, S., Klingenberg, B., Fields, J. C., Chern, J-Y. and Blank, S. V. (2017) Ovarian cancer survivors’ acceptance of treatment side effects evolves as goals of care change over the cancer continuum. Gynecologic Oncology 146 (2): 386–391. https://doi.org/10.1016/j.ygyno.2017.05.029
Hanson, L. C. and Winzelberg, G. (2013) Research priorities for geriatric palliative care: goals, values, and preferences. Journal of Palliative Medicine 16 (10): 1175–1179. https://doi.org/10.1089/jpm.2013.9475
Hanson, L. C., Zimmerman, S., Song, M.-K., Lin, F.-C., Rosemond, C., Carey, T. S. and Mitchell, S. L. (2017) Effect of the goals of care intervention for advanced dementia: A randomized clinical trial. JAMA Internal Medicine 177 (1): 24–31. https://doi.org/10.1001/jamainternmed.2016.7031
Hill, D. L., Miller, V., Walter, J. K., Carroll, K. W., Morrison, W. E., Munson, D. A., Kang, T. I., Hinds, P. S. and Feudtner, C. (2014) Regoaling: A conceptual model of how parents of children with serious illness change medical care goals. BMC Palliative Care 13: Art. 9. https://doi.org/10.1186/1472-684X-13-9
Holm, S. (2010). Euthanasia: agreeing to disagree? Medicine, Health Care and Philosophy 13 (4): 399–402. https://doi.org/10.1007/s11019-010-9264-1
Kaldjian, L. C. (2014) Practicing Medicine and Ethics: Integrating Wisdom, Conscience, and Goals of Care. New York: Cambridge University Press. https://doi.org/10.1017/CBO9780511997891
Kaldjian, L. C. (2017) Concepts of health, ethics, and communication in shared decision making. Communication & Medicine 14 (1): 83–95. https://doi.org/10.1558/cam.32845
Kaldjian, L. C., Curtis, A. E., Shinkunas, L. A. and Cannon, K. T. (2009) Goals of care toward the end of life: A structured literature review. American Journal of Hospice and Palliative Medicine 25 (6): 501–511. https://doi.org/10.1177/1049909108328256
Kaldjian, L. C., Weir, R. F. and Duffy, T. P. (2005) A clinician’s approach to clinical ethical reasoning. Journal of General Internal Medicine 20 (3): 306–311. https://doi.org/10.1111/j.1525-1497.2005.40204.x
Kelly, B. J., Varghese, F. T. and Pelusi, D. (2003) Countertransference and ethics: A perspective on clinical dilemmas in end-of-life decisions. Palliative and Support Care 1 (4): 367–375. https://doi.org/10.1017/S1478951503030517
Levine, D. R., Johnson, L-M., Snyder, A., Wiser, R. K., Gibson, D., Kane, J. R. and Baker, J. N. (2016) Integrating palliative care in pediatric oncology: Evidence for an evolving paradigm for comprehensive cancer care. Journal of the National Comprehensive Cancer Network 14 (6): 741–748. https://doi.org/10.6004/jnccn.2016.0076
Liberman, T., Kozikowski, A., Kwon, N., Emmert, B., Akerman, M. and Pekmezaris, R. (2018) Identifying advanced illness patients in the emergency department and having goals-of-care discussions to assist with early hospice referral. Journal of Emergency Medicine 54 (2): 191–197. https://doi.org/10.1016/j.jemermed.2017.08.009
Mack, J. W., Weeks, J. C., Wright, A. A., Block, S. D. and Prigerson, H. G. (2010) End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology 28 (7): 1203–1208. https://doi.org/10.1200/JCO.2009.25.4672
Montgomery, K. (2006) How Doctors Think: Clinical Judgment and the Practice of Medicine. Oxford: Oxford University Press.
Myers, J., Cosby, R., Gzik, D., Harle, I., Harrold, D., Incardona, N. and Walton, T. (2018) Provider tools for advance care planning and goals of care discussion: A systematic review. American Journal of Hospice and Palliative. Online first: https://doi.org/10.1177/1049909118760303
Nenner, F. (2013) Goals of care: A family meeting. Journal of Palliative Medicine 16 (1): 103–104. https://doi.org/10.1089/jpm.2012.0251
Reinke, L. F., Engelberg, R. A., Shannon, S. E., Wenrich, M. D., Vig, E. K., Back, A. L. and Curtis, J. R. (2008) Transitions regarding palliative and end-of-life care in severe chronic obstructive lung disease or advanced cancer: Themes identified by patients, families, and clinicians. Journal of Palliative Medicine 11 (4): 601–609. https://doi.org/10.1089/jpm.2007.0236
Rosenberg, A. R., Dussel, V., Kang, T., Geyer, R., Gerhardt, C. A., Feudtner, C. and Wolfe, J. (2013) Psychological distress in parents of children with advanced cancer. JAMA Pediatrics 167 (6): 537–543. https://doi.org/10.1001/jamapediatrics.2013.628
Rosenberg, A. R., Orellana, L., Kang, T. I., Geyer, R., Feudtner, C., Dussel, V. and Wolfe, J. (2014) Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. Journal of Clinical Oncology 32 (27): 3005–3011. https://doi.org/10.1200/JCO.2014.55.4659
Rosenberg, A. R., Wolfe, J., Wiener, L., Lyon, M. and Feudtner, C. (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics 170: 1216–1223. https://doi.org/10.1001/jamapediatrics.2016.2142
Schulman-Green, D., Smith, C. B., Lin, J. J., Feder, S. and Bickell, N. A. (2018) Oncologists’ and patients’ perceptions of initial, intermediate, and final goals of care conversations. Journal of Pain and Symptom Management 55 (3): 890–896. https://doi.org/10.1016/j.jpainsymman.2017.09.024
Sinsky, C., Colligan, L., Li, L., Prgomet, M., Reynolds, S., Goeders, L., Westbrook, J., Tutty, M. and Blike, G. (2016). Allocation of physician time in ambulatory practice: A time and motion study in 4 specialties. Annals of Internal Medicine 165 (11): 753–760. https://doi.org/10.7326/M16-0961
Snaman, J. M., Kaye, E. C., Baker, J. N. and Wolfe, J. (2018) Pediatric palliative oncology: The state of the science and art of caring for children with cancer. Current Opinion in Pediatrics 30 (1): 40–48. https://doi.org/10.1097/MOP.0000000000000573
Stanek, S. (2017) Goals of care: A concept clarification. Journal of Advanced Nursing 73 (6): 1302–1314. https://doi.org/10.1111/jan.13243
Swetz, K. M., and Kamal, A. H. (2018) Palliative care. Annals of Internal Medicine 168 (5): ITC33–ITC48. https://doi.org/10.7326/AITC201803060
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson, V. A., Block, S. D., Maciejewski, P. K. and Prigerson, H.G. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement. Journal of the American Medical Association 300 (4): 1665–1673. https://doi.org/10.1001/jama.300.14.1665
You, J. H., Aleksova, N., Ducharme, A., Maciver, J., Mielniczuk, L., Fowler, R. A., Demers, C., Clarke, B., Parent, M.-C., Toma, M., Strachan, P. H., Farand, P., Isaac, D., Zieroth, S., Swinton, M., Jiang, X., Day, A. G., Heyland, D. K. and Ross, H. J. (2017) Barriers to goals of care discussions with patients who have advanced heart failure: Results of a multicentre survey of hospital-based cardiology clinicians. Journal of Cardiac Failure 23 (11): 786–793. https://doi.org/10.1016/j.cardfail.2017.06.003
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2018-10-26
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Kaldjian, L. C. (2018). In support of goals-of-care discussions in shared decision making – An extended response to the rejoinders. Communication and Medicine, 14(3), 287-298. https://doi.org/10.1558/cam.36373
