Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations.
Advance care planning
Dialysis
End of life
End-stage kidney disease
Palliative
Journal
Journal of nephrology
ISSN: 1724-6059
Titre abrégé: J Nephrol
Pays: Italy
ID NLM: 9012268
Informations de publication
Date de publication:
18 Jan 2024
18 Jan 2024
Historique:
received:
15
08
2023
accepted:
18
11
2023
medline:
18
1
2024
pubmed:
18
1
2024
entrez:
18
1
2024
Statut:
aheadofprint
Résumé
Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances. However, there are many barriers to successful implementation of advance care planning in this population. In this narrative review we discuss the current evidence for advance care planning in patients on dialysis, the data around the barriers to advance care planning implementation, and interventions that have been trialled. The review explores whether the concepts and approaches to advance care planning in this population need to be updated to encompass current and future care. It suggests that a shift from a problem-orientated approach to a goal-orientated approach may lead to better engagement, with more patient-centred and satisfying outcomes.
Identifiants
pubmed: 38236475
doi: 10.1007/s40620-023-01841-3
pii: 10.1007/s40620-023-01841-3
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : National Institute for Health and Care Research
ID : ACF-2021-11-002
Informations de copyright
© 2024. The Author(s).
Références
UK Renal Registry (2022) UK renal registry 24th annual report—data to 31/12/2020. UK Renal Registry, Bristol
Lovell N, Jones C, Baynes D, Dinning S, Vinen K, Murtagh FE (2017) Understanding patterns and factors associated with place of death in patients with end-stage kidney disease: a retrospective cohort study. Palliat Med 31(3):283–288
pubmed: 27495813
Hussain JA, Mooney A, Russon L (2013) Comparison of survival analysis and palliative care involvement in patients aged over 70 years choosing conservative management or renal replacement therapy in advanced chronic kidney disease. Palliat Med 27(9):829–839
pubmed: 23652841
Bristowe K, Horsley HL, Shepherd K, Brown H, Carey I, Matthews B et al (2015) Thinking ahead–the need for early advance care planning for people on haemodialysis: a qualitative interview study. Palliat Med 29(5):443–450
pubmed: 25527527
pmcid: 4404401
Kerr M, Matthews B, Medcalf JF, O’Donoghue D (2017) End-of-life care for people with chronic kidney disease: cause of death, place of death and hospital costs. Nephrol Dial Transplant 32(9):1504–1509
pubmed: 27207901
Brinkman-Stoppelenburg A, Rietjens JA, Van der Heide A (2014) The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 28(8):1000–1025
pubmed: 24651708
Rietjens JA, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M et al (2017) Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 18(9):e543–e551
pubmed: 28884703
National Institute for Health and Care Excellence (Great Britain) (2021) Shared decision making (NG197). Available from www.nice.org.uk/guidance/ng197 . Accessed 25 May 2023
McAdoo SP, Brown EA, Chesser AM, Farrington K, Salisbury EM, group p-Tra (2012) Measuring the quality of end of life management in patients with advanced kidney disease: results from the pan-Thames renal audit group. Nephrol Dial Transplant 27(4):1548–1554
pubmed: 21980155
Ladin K, Neckermann I, D’Arcangelo N, Koch-Weser S, Wong JB, Gordon EJ et al (2021) Advance care planning in older adults with CKD: patient, care partner, and clinician perspectives. J Am Soc Nephrol 32(6):1527–1535
pubmed: 33827902
pmcid: 8259659
Lim CED, Ng RW, Cheng NCL, Cigolini M, Kwok C, Brennan F (2016) Advance care planning for haemodialysis patients. Cochrane Database Syst Rev. https://doi.org/10.1002/14651858.CD010737.pub2
doi: 10.1002/14651858.CD010737.pub2
pubmed: 27943237
pmcid: 6463837
Goff SL, Eneanya ND, Feinberg R, Germain MJ, Marr L, Berzoff J et al (2015) Advance care planning: a qualitative study of dialysis patients and families. Clin J Am Soc Nephrol 10(3):390–400
pubmed: 25680737
pmcid: 4348687
Hanratty B, Hibbert D, Mair F, May C, Ward C, Corcoran G et al (2006) Doctors’ understanding of palliative care. Palliat Med 20(5):493–497
pubmed: 16903402
Benini F, Fabris M, Pace DS, Verno V, Negro V, De Conno F et al (2011) Awareness, understanding and attitudes of Italians regarding palliative care. Annali dell’Istituto superiore di sanità 47:253–259
pubmed: 21952149
Bennett MI, Davies EA, Higginson IJ (2010) Delivering research in end-of-life care: problems, pitfalls and future priorities. Palliat Med 24(5):456–461
pubmed: 20427380
Kelemen AM, Groninger H (2018) Ambiguity in end-of-life care terminology—what do we mean by “comfort care?” JAMA Intern Med 178(11):1442–1443
pubmed: 30193327
Miyashita M, Hirai K, Morita T, Sanjo M, Uchitomi Y (2008) Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis. Support Care Cancer 16(3):217–222
pubmed: 17318594
Gomm S, Farrington K (2015) End of life care in advanced kidney disease: a framework for implementation. London: NHS Improving Quality. Available from: https://webarchive.nationalarchives.gov.uk/ukgwa/20160506191033/ , http://www.nhsiq.nhs.uk/11739.aspx . Accessed 16 June 2023
Wachterman MW, O’Hare AM, Rahman O-K, Lorenz KA, Marcantonio ER, Alicante GK et al (2019) One-year mortality after dialysis initiation among older adults. JAMA Intern Med 179(7):987–990
pubmed: 31009039
pmcid: 6583827
Ladin K, Buttafarro K, Hahn E, Koch-Weser S, Weiner DE (2018) “End-of-life care? I’m not going to worry about that yet.” Health literacy gaps and end-of-life planning among elderly dialysis patients. Gerontologist 58(2):290–299
pubmed: 28329829
Ducharlet K, Philip J, Kiburg K, Gock H (2021) Renal supportive care, palliative care and end-of-life care: perceptions of similarities, differences and challenges across Australia and New Zealand. Nephrology 26(1):15–22
pubmed: 32989844
Dalal S, Palla S, Hui D, Nguyen L, Chacko R, Li Z et al (2011) Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 16(1):105–111
pubmed: 21212438
pmcid: 3228056
Murray SA, Kendall M, Boyd K, Sheikh A (2005) Illness trajectories and palliative care. BMJ 330(7498):1007–1011
pubmed: 15860828
pmcid: 557152
Davison SN, Levin A, Moss AH, Jha V, Brown EA, Brennan F et al (2015) Executive summary of the KDIGO controversies conference on supportive care in chronic kidney disease: developing a roadmap to improving quality care. Kidney Int 88(3):447–459
pubmed: 25923985
Lam DY, Scherer JS, Brown M, Grubbs V, Schell JO (2019) A conceptual framework of palliative care across the continuum of advanced kidney disease. Clin J Am Soc Nephrol 14(4):635–641
pubmed: 30728167
pmcid: 6450347
Abel J, Kellehear A, Millington Sanders C, Taubert M, Kingston H (2020) Advance care planning re-imagined: a needed shift for COVID times and beyond. Palliat Care Soc Pract 14:2632352420934491
pubmed: 32924012
pmcid: 7446254
Mandel EI, Bernacki RE, Block SD (2017) Serious illness conversations in ESRD. Clin J Am Soc Nephrol 12(5):854–863
pubmed: 28031417
Thamcharoen N, Nissaisorakarn P, Cohen RA, Schonberg MA (2021) Serious illness conversations in advanced kidney disease: a mixed-methods implementation study. BMJ Support Palliat Care. https://doi.org/10.1136/bmjspcare-2020-002830
doi: 10.1136/bmjspcare-2020-002830
pubmed: 33731464
Mandel EI, Maloney FL, Pertsch NJ, Gass JD, Sanders JJ, Bernacki RE et al (2023) A pilot study of the serious illness conversation guide in a dialysis clinic. Am J Hosp Palliat Med 40:1106–1113
IOM (Institute of Medicine). 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. The National Academies Press, Washington, DC
Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY (2018) Overview of systematic reviews of advance care planning: summary of evidence and global lessons. J Pain Symptom Manag 56(3):436–59.e25
DH Renal NSF Team (2005) national service framework for renal services: chronic kidney disease, acute renal failure and end of life care. London, UK
Bradshaw CL, Gale RC, Chettiar A, Ghaus SJ, Thomas I-C, Fung E et al (2020) Medical record documentation of goals-of-care discussions among older veterans with incident kidney failure. Am J Kidney Dis 75(5):744–752
pubmed: 31679746
Axelsson L, Alvariza A, Lindberg J, Öhlén J, Håkanson C, Reimertz H et al (2018) Unmet palliative care needs among patients with end-stage kidney disease: a national registry study about the last week of life. J Pain Symptom Manag 55(2):236–244
Luckett T, Spencer L, Morton RL, Pollock CA, Lam L, Silvester W et al (2017) Advance care planning in chronic kidney disease: a survey of current practice in Australia. Nephrology 22(2):139–149
pubmed: 26860214
Davison SN, Simpson C (2006) Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 333(7574):886
pubmed: 16990294
pmcid: 1626305
O’Halloran P, Noble H, Norwood K, Maxwell P, Shields J, Fogarty D et al (2018) Advance care planning with patients who have end-stage kidney disease: a systematic realist review. J Pain Symptom Manag 56(5):795–80.e18
Perry E, Swartz J, Brown S, Smith D, Kelly G, Swartz R (2005) Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients. Am J Kidney Dis 46(1):111–119
pubmed: 15983964
O’Halloran P, Noble H, Norwood K, Maxwell P, Murtagh F, Shields J et al (2020) Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT). BMC Nephrol 21(1):1–17
Song M-K, Ward SE, Fine JP, Hanson LC, Lin F-C, Hladik GA et al (2015) Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis 66(5):813–822
pubmed: 26141307
pmcid: 5972830
Song M-K, Donovan HS, Piraino BM, Choi J, Bernardini J, Verosky D et al (2010) Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease. Appl Nurs Res 23(2):65–72
pubmed: 20420992
Kirchhoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL (2012) Effect of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc 60(5):946–950
pubmed: 22458336
pmcid: 3354033
Song M-K, Unruh ML, Manatunga A, Plantinga LC, Lea J, Jhamb M et al (2018) SPIRIT trial: A phase III pragmatic trial of an advance care planning intervention in ESRD. Contemp Clin Trials 64:188–194
pubmed: 28993286
Fried TR, Bullock K, Iannone L, O’leary JR (2009) Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc 57(9):1547–1555
pubmed: 19682120
pmcid: 2783892
Javier AD, Figueroa R, Siew ED, Salat H, Morse J, Stewart TG et al (2017) Reliability and utility of the surprise question in CKD stages 4 to 5. Am J Kidney Dis 70(1):93–101
pubmed: 28215946
pmcid: 5771496
Salat H, Javier A, Siew ED, Figueroa R, Lipworth L, Kabagambe E et al (2017) Nephrology provider prognostic perceptions and care delivered to older adults with advanced kidney disease. Clin J Am Soc Nephrol 12(11):1762–1770
pubmed: 28923833
pmcid: 5672972
Ernecoff NC, Abdel-Kader K, Cai M, Yabes J, Shah N, Schell JO et al (2021) Implementation of surprise question assessments using the electronic health record in older adults with advanced CKD. Kidney360 2(6):966
pubmed: 35373084
pmcid: 8791363
Alpert MA (2011) Sudden cardiac arrest and sudden cardiac death on dialysis: Epidemiology, evaluation, treatment, and prevention. Hemodial Int 15:S22–S29
pubmed: 22093597
Sudore RL, Fried TR (2010) Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med 153(4):256–261
pubmed: 20713793
pmcid: 2935810
Lazenby S, Edwards A, Samuriwo R, Riley S, Murray MA, Carson-Stevens A (2017) End-of-life care decisions for haemodialysis patients—‘we only tend to have that discussion with them when they start deteriorating.’ Health Expect 20(2):260–273
pubmed: 26968338
Saeed F, Sardar MA, Davison SN, Murad H, Duberstein PR, Quill TE (2019) Patients’ perspectives on dialysis decision-making and end-of-life care. Clin Nephrol 91(5):294
pubmed: 30663974
pmcid: 6595398
Axelsson L, Randers I, Lundh Hagelin C, Jacobson SH, Klang B (2012) Thoughts on death and dying when living with haemodialysis approaching end of life. J Clin Nurs 21(15–16):2149–2159
pubmed: 22788556
O’Hare AM, Szarka J, McFarland LV, Taylor JS, Sudore RL, Trivedi R et al (2016) Provider perspectives on advance care planning for patients with kidney disease: whose job is it anyway? Clin J Am Soc Nephrol 11(5):855–866
pubmed: 27084877
pmcid: 4858488
Goff SL, Unruh ML, Klingensmith J, Eneanya ND, Garvey C, Germain MJ et al (2019) Advance care planning with patients on hemodialysis: an implementation study. BMC Palliat Care 18(1):1–8
Kaushal P, Adenwalla SF, Lightfoot CJ, March DS, Gray LJ, Burton JO (2022) Evaluation of the design, conduct and reporting of randomised controlled trials in the haemodialysis population: a scoping review and interview study. BMJ Open 12(3):e058368
pubmed: 35338066
pmcid: 8961160
Murray AM, Pederson SL, Tupper DE, Hochhalter AK, Miller WA, Li Q et al (2007) Acute variation in cognitive function in hemodialysis patients: a cohort study with repeated measures. Am J Kidney Dis 50(2):270–278
pubmed: 17660028
Weiner BJ, Lewis CC, Sherr K (2022) Practical implementation science: moving evidence into action. Springer, New York
Saeed F, Ladwig S, Allen RJ, Eneanya ND, Tamura MK, Fiscella KA (2023) Racial disparities in health beliefs and advance care planning among patients receiving maintenance dialysis. J Pain Symptom Manag 65(4):318–325
Islam Z, Pollock K, Patterson A, Hanjari M, Wallace L, Mururajani I et al (2023) Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds. Health Soc Care Deliv Res. https://doi.org/10.3310/JVFW4781
doi: 10.3310/JVFW4781
pubmed: 37464868
Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK et al (2021) Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study. BMJ Support Palliat Care. https://doi.org/10.1136/bmjspcare-2021-003083
doi: 10.1136/bmjspcare-2021-003083
pubmed: 34511409
Song M-K, Ward SE, Lin F-C, Hamilton JB, Hanson LC, Hladik GA et al (2016) Racial differences in outcomes of an advance care planning intervention for dialysis patients and their surrogates. J Palliat Med 19(2):134–142
pubmed: 26840848
pmcid: 4753624
Ahn D, Williams S, Stankus N, Saunders M (2021) Advance care planning among African American patients on haemodialysis and their end-of-life care preferences. J Ren Care 47(4):265–278
pubmed: 33616278
pmcid: 9237830
Morton R, Tong A, Howard K, Snelling P, Webster A (2010) The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ 340:c112
pubmed: 20085970
pmcid: 2808468
Wilkinson E, Randhawa G, Brown E, Da Silva GM, Stoves J, Warwick G et al (2017) Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients. Clin Kidney J 10(3):419–424
pubmed: 28616221
pmcid: 5466116
Sellars M, Clayton JM, Detering KM, Tong A, Power D, Morton RL (2019) Costs and outcomes of advance care planning and end-of-life care for older adults with end-stage kidney disease: a person-centred decision analysis. PLoS ONE 14(5):e0217787
pubmed: 31150504
pmcid: 6544277
Rodriguez de Sosa G, Nicklas A, Thamer M, Anderson E, Reddy N, Stevelos J et al (2022) Implementing advance care planning for dialysis patients: HIGHway project. BMC Palliat Care 21(1):1–9
Chiu HH-L, Murphy-Burke DM, Thomas SA, Melnyk Y, Kruthaup-Harper AL, Dong JJ et al (2021) Advancing palliative care in patients with CKD: from ideas to practice. Am J Kidney Dis 77(3):420–426
pubmed: 33181264
Hawkes CA, Fritz Z, Deas G, Ahmedzai SH, Richardson A, Pitcher D et al (2020) Development of the recommended summary plan for eEmergency care and treatment (respect). Resuscitation 148:98–107
pubmed: 31945422
Age UK (2023) Advance decisions, advance statements and living wills (FS72). Available from https://www.ageuk.org.uk/services/information-advice/guides-and-factsheets/#health . Accessed 16 June 2023
Murtagh FE, Burns A, Moranne O, Morton RL, Naicker S (2016) Supportive care: comprehensive conservative care in end-stage kidney disease. Clin J Am Soc Nephrol 11(10):1909–1914
pubmed: 27510453
pmcid: 5053791