Editorial Advance Care Planning in CKD: Clinical and Research Opportunities Related Article, p. 761
A
fter more than 50 years of providing dialysis, the nephrology community is only recently considering how interdisciplinary nephrology care teams communicate with patients and families to make medical decisions. Withholding and withdrawing dialysis therapy have long been a part of nephrology practice and research, culminating in a clinical practice guideline1 to assist nephrologists in making medical decisions with patients and families. Despite this, dialysis patients, more than individuals with congestive heart failure or cancer, tend to die in the intensive care units of hospitals while undergoing costly aggressive treatments, 2 inconsistent with their wishes.3 More recently, the high symptom burden that patients with chronic kidney disease (CKD) experience has been illuminated.4,5 There also is recognition that for some older patients, dialysis may provide little or no survival or quality-of-life benefit, and thus for these patients, conservative management pathways may be more appropriate.6-8 There is a great need for integrated palliative care in nephrology practice.1,9,10 Quality palliative care includes symptom management, terminal care, bereavement support, and advance care planning (ACP). In this issue of AJKD, Luckett et al11 report results of their review of ACP in CKD. ACP is a process of reflection and discussions between health care providers, patients, and families to clarify patients’ values, treatment preferences, and goals of care for use in the event that the individual loses his or her capacity for medical decision making.12 Completing a written advance directive may be one outcome of ACP, but this is not the ultimate objective as was once believed. Clinical experience suggests that ACP enhances communication between patients and health care providers, reduces unwanted and ineffective aggressive treatments at the end of life, improves patient and family satisfaction with care, and improves bereavement adjustment of loved ones. This is supported by evidence in the cancer and general populations.13 Current nephrology clinical practice guidelines emphasize the importance of ACP in decision making.1 Unfortunately, unanswered questions remain about implementing ACP into clinical practice. In their article, Luckett et al11 present their comprehensive literature review of ACP for patients with CKD. The authors sought to identify interventions and measures used in ACP to establish the effectiveness of these interventions and clarify the barriers and facilitators to Am J Kidney Dis. 2014;63(5):739-740
implementation.11 Their review included quantitative and qualitative studies. Although 55 articles were identified, detailed assessment revealed that most were descriptive and addressed patients’ preferences and attitudes about ACP. The few intervention studies focused primarily on training facilitators (peers, nurses, etc) and tested limited outcomes of ACP, such as patient/family satisfaction with the discussions, completion of advance directives, or surrogates’ comfort with that role.11 Many members within the interdisciplinary care team (nurse, social worker, etc) could perform the role of ACP facilitator effectively.14-16 The literature suggests that discussions about stopping dialysis therapy require a distinct conversation separate from general discussions about other life-sustaining therapies. This primarily is because patients and families rarely discuss discontinuing dialysis therapy,17 perhaps because people who depend on long-term dialysis for life view dialysis differently than other, more acute lifesustaining treatments. Evaluating the available qualitative studies exposed the importance of developing patient confidence that their wishes and advance directives will be followed. One study of dialysis patients demonstrated that patients are more likely to make their own decision to withdraw from dialysis therapy after undergoing ACP with trained facilitators (37.7% vs 17% ).14 Because patients with CKD constituted only 42% of this study population, Luckett et al11 did not include it in their analysis. Such is the state of the literature on ACP in CKD. There is a tremendous knowledge-to-practice gap in the area of planning for end-of-life care, with few outcome studies, many small single-center studies with limited numbers of patients, and no uniform approach for training facilitators or implementing ACP. There also is no universally accepted framework to evaluate either a patient’s readiness to engage in ACP or the outcomes of ACP. No studies have measured compliance with expressed wishes of patients with CKD for end-of-life care or have examined ACP in patients engaged in conservative care without dialysis. Additional study to elucidate effective strategies for widespread uptake of a formalized ACP framework in patients with CKD across complex multisector health care systems is required. Education Address correspondence to Jean L. Holley, MD, Nephrology S2S2, Carle Physician Group, 611 West Park St, Urbana, IL 61801. E-mail: [email protected] Ó 2014 by the National Kidney Foundation, Inc. 0272-6386/$36.00 http://dx.doi.org/10.1053/j.ajkd.2014.02.005 739
Holley and Davison
and formal ACP likely would lead to less use of ineffective expensive care at the end of life and, most importantly, would improve the quality of end-of-life care. Common sense and clinical experience, along with the literature now available, argue for focusing study on the implementation of ACP rather than further studies of small groups of patients and their responses to ACP discussions. Is not part of good medical care listening to our patient’s desires, fears, and hopes and providing patients and families with the information they need to make decisions about their care based on their overall goals? As suggested by Luckett et al,11 future study of ACP should include specific consideration of withholding and withdrawing dialysis therapy in addition to general discussions about other life-sustaining therapies and should focus on a common evaluative framework to ensure that appropriate outcomes are assessed. While evidence clarifying optimal delivery of ACP is evolving, no trials to date have demonstrated harm of ACP to patients and caregivers or excessive costs. It is unacceptable to leave patients and their families dangling in the throes of a progressively debilitating disease wrought with uncomfortable symptoms that largely go unaddressed4,5 and difficult medical decision making that often goes unguided by health care providers.1 ACP should be integrated into nephrology standard practice, and careful evaluation of its impact on important patient, caregiver, and societal outcomes should be a research priority. We appreciate the light shown on this issue by the careful study of Luckett et al.11 While we await more definitive study of this issue, we can only hope that clinical nephrologists realize the importance of ACP and engage in these conversations with their patients and families. Jean L. Holley, MD University of Illinois, Urbana-Champaign Urbana, Illinois Sara N. Davison, MD University of Alberta Alberta, Canada
ACKNOWLEDGEMENTS Support: None. Financial Disclosure: The authors declare that they have no relevant financial interests.
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REFERENCES 1. Renal Physicians Association. Shared Decision-Making in the Appropriate Initiation of and Withdrawal From Dialysis: Clinical Practice Guideline. 2nd ed. Rockville, MD: RPA; 2010. 2. Wong SPY, Kreuter W, O’Hare AM. Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med. 2012;172:661-663. 3. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. 4. Murtagh FE, Addington-Hall J, Higginson IJ. The prevalence of symptoms in end-stage renal disease: a systematic review. Adv Chronic Kidney Dis. 2007;4:82-99. 5. Weisbord SD, Fried LF, Arnold RM, et al. Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol. 2005;16: 2487-2494. 6. Carson RC, Juszczak M, Davenport A, Burns A. Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clin J Am Soc Nephrol. 2009;4:1611-1619. 7. Joly D, Anglicheau D, Alberti C, et al. Octogenarians reaching end-stage renal disease: cohort study of decision-making and clinical outcomes. J Am Soc Nephrol. 2003;14:1012-1021. 8. Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris EE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant. 2007;22:1955-1962. 9. Cohen LM, Moss AH, Weisbord SD, Germain MJ. Renal palliative care. J Palliat Med. 2006;9:977-992. 10. Kare PM, Vinen K, Murtagh FE. Palliative care for advanced renal disease: a summary of the evidence and future direction. Palliat Med. 2013;27:817-821. 11. Luckett T, Sellars M, Tieman J, et al. Advance care planning for adults with CKD: a systematic integrative review. Am J Kidney Dis. 2014;63:761-770. 12. Davison SN. Advance care planning in patients with endstage renal disease. Prog Palliat Care. 2009;17:170-178. 13. Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148:147-159. 14. Kirchoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL. Impact of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc. 2012;60:946-950. 15. Perry E, Swartz J, Brown S, Smith D, Kelly G, Swartz R. Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients. Am J Kidney Dis. 2005;46:111-119. 16. Song M-K, Ward SE, Happ MB, et al. Randomized controlled trial of APIRIT: an effective approach to preparing African American dialysis patients and families for end of life. Res Nurs Health. 2009;32:260-273. 17. Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LS, Moss AH. Failure of advance care planning to elicit patient’s preferences for withdrawal from dialysis. Am J Kidney Dis. 1999;33:688-693.
Am J Kidney Dis. 2014;63(5):739-740
A
fter more than 50 years of providing dialysis, the nephrology community is only recently considering how interdisciplinary nephrology care teams communicate with patients and families to make medical decisions. Withholding and withdrawing dialysis therapy have long been a part of nephrology practice and research, culminating in a clinical practice guideline1 to assist nephrologists in making medical decisions with patients and families. Despite this, dialysis patients, more than individuals with congestive heart failure or cancer, tend to die in the intensive care units of hospitals while undergoing costly aggressive treatments, 2 inconsistent with their wishes.3 More recently, the high symptom burden that patients with chronic kidney disease (CKD) experience has been illuminated.4,5 There also is recognition that for some older patients, dialysis may provide little or no survival or quality-of-life benefit, and thus for these patients, conservative management pathways may be more appropriate.6-8 There is a great need for integrated palliative care in nephrology practice.1,9,10 Quality palliative care includes symptom management, terminal care, bereavement support, and advance care planning (ACP). In this issue of AJKD, Luckett et al11 report results of their review of ACP in CKD. ACP is a process of reflection and discussions between health care providers, patients, and families to clarify patients’ values, treatment preferences, and goals of care for use in the event that the individual loses his or her capacity for medical decision making.12 Completing a written advance directive may be one outcome of ACP, but this is not the ultimate objective as was once believed. Clinical experience suggests that ACP enhances communication between patients and health care providers, reduces unwanted and ineffective aggressive treatments at the end of life, improves patient and family satisfaction with care, and improves bereavement adjustment of loved ones. This is supported by evidence in the cancer and general populations.13 Current nephrology clinical practice guidelines emphasize the importance of ACP in decision making.1 Unfortunately, unanswered questions remain about implementing ACP into clinical practice. In their article, Luckett et al11 present their comprehensive literature review of ACP for patients with CKD. The authors sought to identify interventions and measures used in ACP to establish the effectiveness of these interventions and clarify the barriers and facilitators to Am J Kidney Dis. 2014;63(5):739-740
implementation.11 Their review included quantitative and qualitative studies. Although 55 articles were identified, detailed assessment revealed that most were descriptive and addressed patients’ preferences and attitudes about ACP. The few intervention studies focused primarily on training facilitators (peers, nurses, etc) and tested limited outcomes of ACP, such as patient/family satisfaction with the discussions, completion of advance directives, or surrogates’ comfort with that role.11 Many members within the interdisciplinary care team (nurse, social worker, etc) could perform the role of ACP facilitator effectively.14-16 The literature suggests that discussions about stopping dialysis therapy require a distinct conversation separate from general discussions about other life-sustaining therapies. This primarily is because patients and families rarely discuss discontinuing dialysis therapy,17 perhaps because people who depend on long-term dialysis for life view dialysis differently than other, more acute lifesustaining treatments. Evaluating the available qualitative studies exposed the importance of developing patient confidence that their wishes and advance directives will be followed. One study of dialysis patients demonstrated that patients are more likely to make their own decision to withdraw from dialysis therapy after undergoing ACP with trained facilitators (37.7% vs 17% ).14 Because patients with CKD constituted only 42% of this study population, Luckett et al11 did not include it in their analysis. Such is the state of the literature on ACP in CKD. There is a tremendous knowledge-to-practice gap in the area of planning for end-of-life care, with few outcome studies, many small single-center studies with limited numbers of patients, and no uniform approach for training facilitators or implementing ACP. There also is no universally accepted framework to evaluate either a patient’s readiness to engage in ACP or the outcomes of ACP. No studies have measured compliance with expressed wishes of patients with CKD for end-of-life care or have examined ACP in patients engaged in conservative care without dialysis. Additional study to elucidate effective strategies for widespread uptake of a formalized ACP framework in patients with CKD across complex multisector health care systems is required. Education Address correspondence to Jean L. Holley, MD, Nephrology S2S2, Carle Physician Group, 611 West Park St, Urbana, IL 61801. E-mail: [email protected] Ó 2014 by the National Kidney Foundation, Inc. 0272-6386/$36.00 http://dx.doi.org/10.1053/j.ajkd.2014.02.005 739
Holley and Davison
and formal ACP likely would lead to less use of ineffective expensive care at the end of life and, most importantly, would improve the quality of end-of-life care. Common sense and clinical experience, along with the literature now available, argue for focusing study on the implementation of ACP rather than further studies of small groups of patients and their responses to ACP discussions. Is not part of good medical care listening to our patient’s desires, fears, and hopes and providing patients and families with the information they need to make decisions about their care based on their overall goals? As suggested by Luckett et al,11 future study of ACP should include specific consideration of withholding and withdrawing dialysis therapy in addition to general discussions about other life-sustaining therapies and should focus on a common evaluative framework to ensure that appropriate outcomes are assessed. While evidence clarifying optimal delivery of ACP is evolving, no trials to date have demonstrated harm of ACP to patients and caregivers or excessive costs. It is unacceptable to leave patients and their families dangling in the throes of a progressively debilitating disease wrought with uncomfortable symptoms that largely go unaddressed4,5 and difficult medical decision making that often goes unguided by health care providers.1 ACP should be integrated into nephrology standard practice, and careful evaluation of its impact on important patient, caregiver, and societal outcomes should be a research priority. We appreciate the light shown on this issue by the careful study of Luckett et al.11 While we await more definitive study of this issue, we can only hope that clinical nephrologists realize the importance of ACP and engage in these conversations with their patients and families. Jean L. Holley, MD University of Illinois, Urbana-Champaign Urbana, Illinois Sara N. Davison, MD University of Alberta Alberta, Canada
ACKNOWLEDGEMENTS Support: None. Financial Disclosure: The authors declare that they have no relevant financial interests.
740
REFERENCES 1. Renal Physicians Association. Shared Decision-Making in the Appropriate Initiation of and Withdrawal From Dialysis: Clinical Practice Guideline. 2nd ed. Rockville, MD: RPA; 2010. 2. Wong SPY, Kreuter W, O’Hare AM. Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med. 2012;172:661-663. 3. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. 4. Murtagh FE, Addington-Hall J, Higginson IJ. The prevalence of symptoms in end-stage renal disease: a systematic review. Adv Chronic Kidney Dis. 2007;4:82-99. 5. Weisbord SD, Fried LF, Arnold RM, et al. Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol. 2005;16: 2487-2494. 6. Carson RC, Juszczak M, Davenport A, Burns A. Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clin J Am Soc Nephrol. 2009;4:1611-1619. 7. Joly D, Anglicheau D, Alberti C, et al. Octogenarians reaching end-stage renal disease: cohort study of decision-making and clinical outcomes. J Am Soc Nephrol. 2003;14:1012-1021. 8. Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris EE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant. 2007;22:1955-1962. 9. Cohen LM, Moss AH, Weisbord SD, Germain MJ. Renal palliative care. J Palliat Med. 2006;9:977-992. 10. Kare PM, Vinen K, Murtagh FE. Palliative care for advanced renal disease: a summary of the evidence and future direction. Palliat Med. 2013;27:817-821. 11. Luckett T, Sellars M, Tieman J, et al. Advance care planning for adults with CKD: a systematic integrative review. Am J Kidney Dis. 2014;63:761-770. 12. Davison SN. Advance care planning in patients with endstage renal disease. Prog Palliat Care. 2009;17:170-178. 13. Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148:147-159. 14. Kirchoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL. Impact of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc. 2012;60:946-950. 15. Perry E, Swartz J, Brown S, Smith D, Kelly G, Swartz R. Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients. Am J Kidney Dis. 2005;46:111-119. 16. Song M-K, Ward SE, Happ MB, et al. Randomized controlled trial of APIRIT: an effective approach to preparing African American dialysis patients and families for end of life. Res Nurs Health. 2009;32:260-273. 17. Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LS, Moss AH. Failure of advance care planning to elicit patient’s preferences for withdrawal from dialysis. Am J Kidney Dis. 1999;33:688-693.
Am J Kidney Dis. 2014;63(5):739-740
