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Forms, Articles and Books

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Forms

Fraser Health Authority

FH Modified ESAS (June 2007)

FH Renal Program Pain Assessment Tool (final)

FH Renal Program Pain Flow Sheet (Feb. 2009)

FH Referral Guideline for Renal Patients to Hospice Palliative Care.

FH Renal Program DNR Guidelines (June 2009)

FH Renal Program Terminal Care Orders (Draft Aug. 18, 2009)

FH Renal EOL Working Group Chart Review Form for QI (2009)


Articles

The articles are divided into four categories:
  1. Patient Identification & Goals of Care
  2. Advance Care Planning (ACP) - Renal Focus
  3. Symptom Assessment and Management
  4. Care of the Dying & Bereavement

Patient Identification & Goals of Care

Brown, E. A., Chambers, E. J., & Eggeling, C. (2008). Palliative care in nephrology. Nephrol. Dial. Transplant., 23(3), 789-791.

Beddhu, S.,. Bruns, F. J., Saul, M., Seddon, P., & Zeidel, M. L. (2000). A Simple Comorbidity Scale Predicts Clinical Outcomes and Costs in Dialysis Patients. American Journal of Medicine, 108: 609-613

Crawley, L. M., Marshall, P. A., Lo, B., & Koenig, B. A. Crawley, L. M., Marshall, P. A., Lo, B., & Koenig, B. A. (2002). Strategies for culturally effective end-of-life care. Annals of Internal Medicine, 136, 673-679. 

Comorbidity Index and Score of Charlson et al can be accessed through the Medical Algorhithms website.

Davison, S. N. (2002). Quality end-of-life care in dialysis units. Seminars in Dialysis, 15(1), 1-4.

Davison, S.N., Jhangri, G., Holley, J.L., & Moss, A.H. (2006). Nephrologists’ reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol, 1,1256-1262.

Fainsinger, R. L., Davison, S. N., & Brenneis, C. (2003). A Supportive Care Model for Dialysis Patients. Palliative Medicine Journal, 17:81-82.

Gunda, S., Thomas, M., & Smith, S. (2005). National survey of palliative care in end-stage renal disease in the UK. Journal of Nephrology, Dialysis and Transplantation, 20, 392-395. 

Haras, M. S. (2008). Planning for a good death: A neglected but essential part of ESRD. Nephrology Nursing Journal, 35(5), 451-458, 483. 


Lunney, J. R., Lynn, J., Foley, D. J., Lipson, S., & Guralnik, J. M. (2003). Patterns of functional decline at the end of life. JAMA, 289: 2387-2392.

Miskulin, D.C., Martin, A. A., Brown, R., Fink, N. E., Coresh, J., Powe, N. R., Meyer, K. B., Levey, M. S.(2004). Predicting 1 year mortality in an outpatient hemodialysis population: a comparison of comorbidity Instruments. NDT, 19 (2): 413-420.

Moss, A. H., Ganjoo, J., Sharma, S., Gansor, J., Senft, S., Weaner, B., Dalton, C., MacKay, K., Pellegrino, B., Anantharaman, P., & Schmidt, R. (2008). Utility of the “surprise” question to identify dialysis patients with high mortality. Clin J Am Soc Nephrol, 3: 1379-1384.

Moss, A. H., Holley, J. L., Davison, S. N., Dart, R.A., Germain, M. J., Cohen, L., & Swartz, R. D.(2004). Palliative Care. American Journal of Kidney Diseases; 43(1), pp 172-185.

Murtagh, F. E. M., Murphy, E., & Sheerin, N. S. (2008). Illness trajectories: An important concept in the management of kidney failure. Nephrol Dial Transplant, 23: 3746-3748.

Poppel, D. M., Cohen, L. M., & Germain, M. J. (2003). The renal palliative care initiative. Journal of Palliative Medicine, 6(2), 321-326.

Renal Physicians Association and American Society of Nephrology. (1999). Clinical Practice Guideline on Shared decision-making in the appropriate initiation of and withdrawal from dialysis: Clinical practice guidelines: 2. Washington, DC.

Shanawani, H., Wenrich, M. D., Tonelli, M. R., Curtis, J. R. (2008). Meeting Physicians’ Responsibilities in Providing End-of-Life Care. CHEST, 133(3), 775-786. 

Weisbord, S. D., Carmody, S. S., Bruns, F. J., Rotondi, A. J., Cohen, L. M., Zeidel, M. L., et al. (2003). Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrology Dialysis and Transplantation, 18, 1345-1352.

Advance Care Planning (ACP)

Briggs, L., Kirchoff, K., Hammes, B., Song, M., & Colvin, E. (2004). Patient-Centered Advance Care Planning in Special Patient Populations: A Pilot Study. Journal of Professional Nursing. 20: 47-58.

Briggs, L. (2002). End-of-life decision making: Having those difficult discussions. Am J for Nurse Practitioners, 2(8): 9-16.   

Ceccarelli, C. M., Castner, D., & Haras, M. S. (2008). Advance Care Planning for Patients with Chronic Kidney Disease – Why Aren’t Nurses More Involved? Nephrology Nursing Journal, 35(6), 553-557.

Cherlin, E., Fried, T., Prigerson, H. G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E. H. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8, 1176-1185.

Davison, S.N. (2006). Facilitating Advance Care Planning for Patients with End Stage Renal Disease: the Patient Perspective. Clin J Am Soc Nephrol, 1:1023-1028. 

Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ, 333 (7574), 868-869.

Davison, S.N., Jhangri, G., Holley, J.L., & Moss, A.H. (2006). Nephrologists' Reported Preparedness for End-of-Life Decision-Making. Clin J Am Soc Nephrol, 1:1256-1262. 

Davison, S.N., Seymour, J., Holley, J. (2010, in press). Advance care planning in end stage renal disease. In E. J. Chambers, M. Germain and E. Brown (Ed,), Supportive Care for the Renal Patien: Oxford Supportive Care (2nd ed., Chapter 4). Oxford, UK: Oxford University Press.

Davison, S.N., & Torgunrud, C. (2007). The creation of an advance care planning process for patients with ESRD. American Journal of Kidney Diseases, 49(1), 27-36. 

(Pediatric) Hammes, B.J., Klevan, J., Kempf, M., & Williams, M.S. (2005). Pediatric advance care planning. Journal of Palliative Medicine; 8:766-773.

Hammes, B. (2001). What does it take to help adults successfully plan for future medical decisions? Journal of Palliative Medicine, 4, 453-456. 

Harle, I., Johnston, J., MacKay, J., Mayer, C., Russell, S., Zwaal, C. (2008 Jan 28). Advance care planning with cancer patients: guideline recommendations. Toronto (ON): Cancer Care Ontario (CCO); 37 p. (Evidence-based series; no. 19-1). Accessed from the National Guideline Clearinghouse at.

Holley, J.L., Carmody, S.S., Moss, A.H., Sullivan, A.M., Cohen, L.M., Block, S.D.,& Arnold, R.M. (2003). The Need for End-of-Life Care Training in Nephrology:National Survey Results of Nephrology Fellows. American Journal of Kidney Diseases, 42(4): pp 813-820.

Holley, J. L. (2005). Palliative care in end-stage renal disease: Focus on advance care planning, hospice referral, and bereavement. Seminars in Dialysis. 18(2),154-6.

Holley, J. L., Stackiewicz, L., Dacko, C., & Rault, R. (1997). Factors Influencing Dialysis Patients' Completion of Advance Directives. Am J Kidney Dis, 30(3), 356-360.

Holley, J. L., Hines, S. C., Glover, J. J., Babrow, A. S., Badzek, L. A., & Moss, A. H. (1999). Failure of Advance Care Planning to Elicit Patients' Preferences for Withdrawal from Dialysis. Am J Kidney Dis; 33(4), 688-693.

Kovacs, P. (2006). Family-centered care: A resource for social work in end-of-life and palliative care. Journal of Social Work in End-of-life & Palliative Care, 2, 13-27.

Larson, D. G., & Tobin, D. R. (2000). End-of-life conversations: Evolving practice and theory, JAMA, 284(12), 1573-1578.

Levine, D. Z. (1999). “Springing back” advance care planning in dialysis. Am J Kidney Dis, 33(5), 980-91.

Lynn, J., & Goldstein, N. E. (2003). Advance care planning for fatal chronic illness: Avoiding commonplace errors and unwarranted suffering. Annals of Internal Medicine, 138, 812-818.

Prendergast, T.J. (2001). Advance care planning: Pitfalls, progress, promise. Critical Care Medicine, 29 (Suppl), N34-N39 

Quill, T. E. (2000). Initiating end-of-life discussions with seriously ill patients: Addressing the “elephant in the room”. JAMA, 284(19), 2502-2507.

Woods, A., Berzoff, J., Cohen, L. G., Cait, C . A., Pekow, P., Germain, M., & Poppel, D. (1999). The family perspective of end-of-life care in end-stage renal disease: The role of the social worker. Journal of Nephrol Social Work, 19, 9-21

Symptom Assessment and Management

Barakzoy, A. S. & Moss, A. H. (2006). Efficacy of the World Health Organization analgesic ladder to rate pain in end-stage renal disease. J Am Soc Nephrol, 17: 3198-3203. Health Organization’s pain ladder

Davison, S.N., Jhangri, G., & Johnson, J. (2006). Longitudinal Validation of a Modified Edmonton Symptom Assessment System (ESAS) in Hemodialysis Patients. Nephrol Dial Transplant, 21(11): 3189-95.

Davison, S.N. (2005). Chronic Pain in End-Stage Renal Disease. Advances in Chronic Kidney Disease, 12(3): 326-334.

Davison, S. N. (2003). Pain in hemodialysis patients: Prevalence, etiology, severity and management. American Journal of Kidney Diseases, 42(6), 1239-1247.

Davison, S. N., Jhangri, G. & Johnson, J. A. (2006). Cross sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of a symptom burden. Kidney Int., 69(9), 1621-1625
Modified Edmonton Symptom Assessment System (ESAS)

Douglas, C., Murtagh, F. E. M., Chambers, E. J., Howse, M., & Ellershaw, J. (2009). Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom expert consensus group. Palliative Medicine, 23, 103-110

Headley, C. M., & Wall, B. (2002). ESRD-associated cutaneous manifestations in a hemodialysis population. Nephrology Nursing Journal, 29 (6), 525-539.

Jablonski, A. (2007). The multidimentional characteristics of symptoms reported by patients on hemodialysis. Nephrology Nursing Journal, 34(1), 29-37. 

Keithi-Reddy, S. R., Patel, T. V., Armstrong, A. W., & Singh, A. K. (2007). Uremic pruritus. Kidney International, 72, 373–377.

Lugon, J. R. (2005). Uremic pruritus: A review. Hemodialysis International, 9: 180–188

Murphy, E. L., Murtagh, F. E., Carey, I., & Sheerin, N. S. (2009). Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: Use of a short patient-completed assessment tool. Nephron, 111(1):c74-80.

Patient Outcomes Scale Symptom Module

Patel, T. S., Freedman, B. I. & Yosipovitch, G. (207). An Update on Pruritus Associated With CKD. American Journal of Kidney Diseases, 50(1), pp 11-20

Murtagh, F. E. M., Addington-Hall, J. M., Edmonds, P. M., Donohoe, P., Carey, I., Jenkins, K. Higginson, I. J. (2007). Symptoms in advanced renal disease: A cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis. Palliative Medicine, 10(6), 1266-1276

National LCP Renal Steering Group. (June 2008). Liverpool care pathway for the dying patient: Guidelines for LCP drug prescribing in advanced chronic kidney disease. Liverpool, UK: Marie Curie Palliative Care Institute.

Renal Physicians Association and American Society of Nephrology. (2000). Clinical Practice Guideline on Shared decision-making in the appropriate initiation of and withdrawal from dialysis: Clinical practice guidelines: 2. Washington, DC.

The Renal Palliative Care Initiative, Promoting Excellent in End-of-Life project website. Treatment Protocols for the following: Pruritus, Nausea and Vomiting, Restless Legs.

Weisbord, S. D., Fried, L. F., Mor, M. K., Resnick, A. L., Unruh, M. L., Palevsky, P. M., Levenson, D. J., Cooksey, S. H., Fine, M. J., Kimmel, P. L., & Arnold, R. M. (2007). Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol, 2: 960-967.


Care of Dying & Bereavement

Abrahm, J., Cooley, M. E., & Ricacho. L. (1995). Letters to the Bereaved: Efficacy of an educational bereavement program for veterans with cancer. Journal of Cancer Education, 10: 207-212.

Bedell, S. E., Cadenhead, K., & Graboys, T. B. (2001). The doctor’s letter of condolence. N EngJ Med, 344 (15), 1162-1164.

Brown, E. A., Chambers, E. J., & Eggeling, C. (2008). Palliative care in nephrology. Nephrol. Dial. Transplant., 23(3), 789-791. In particular, see table 1: Clinical features of end-of-life.

Chater, S., Davison, S.N., Germain, M., & Cohen, L. (2006). Withdrawal from dialysis: The palliative care perspective. Clinical Nephrology, 166(5), 364-372.

Cohen, L. M., Poppel, D. M., Cohen, G. M., Reiter, G. S. (2001). A very good death: measuring quality of dying in end-state renal disease. Journal of Palliative Medicine, 4, 167-172.

Cohen, L. M., Germain, M. J., Poppel, D. M., Woods, A. L., Pekow, P. S., & Kjellstrand, C. M. (2000). Dying well after discontinuing the life-support treatment of dialysis. Arch Intern Med, 160, 2513-2518.

Cohen, L. M. (nd). The Renal Palliative Care Initiative, Memorial Service Manual: A Program Funded by the Robert Wood Johnson Foundation. Kidney End-of-Life Coalition.

Feudtner, C. (2005). Hope and the prospects of healing at the end of life. The Journal of Alternative and Complementary Medicine.

Griffie, J., & Nelson-Marten, P. (2004). Acknowledging the 'Elephant': Communication in palliative care: Speaking the unspeakable when death is imminent. American Journal of Nursing, 104, 48-57. 

Hutchinson, T. (2005). Transitions in the lives of patients with End Stage Renal Disease: a cause of suffering and an opportunity for healing. Palliative Medicine, Vol. 19, No. 4, 270-277. If you google this article, you can download it for free.

Kidney End of Life Coalition. (nd). Ways to Provide Support to Staff after Patient Deaths. From: http://kidneyeol.org/WaystoProvSupport.pdf

Maciejewski, P. K., Zhang, B., Block, S. D., & Prigerson, H. G. (2007). An empirical examination of the stage theory of grief. JAMA, 297:716-723.

Miovic, M., & Block, S. (2007). Psychiatric disorders in advanced cancer. Cancer 2007 Oct 15;110(8):1665-76. 

Murtagh, F. E. M., Shepherd, K. A., Donohoe, P., & Edmonds, P. M. (2006). End of life care in end-stage renal disease: renal and palliative care. British Journal of Nursing, 15(1), 8-11.

Singer, P. A., Martin, D. K., & Merrijoy, K. (1999). Quality end of life care: Patients’ perspectives. J Am Med Assoc., 281(2), 63-8.

Steinhauser, K. E., Clipp, E., Bosworth, H. B., McNeilly, M., Christakis, N. A., Voils, C. I., Tulsky, J. A. (2004). Measuring quality of life at the end of life: Validation of the QUAL-E. Palliative & Supportive Care, 2(1), 3-14.

Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M., & Tulsky, J. A. (2000). In search of a good death: Observations of patients, families, and providers. Ann Intern Med, 132, 825-832.

Teno, J. M., Clarridge, B., Casey, V., Edgman-Levitan, S., & Fowler, J. (2001). Validation of tollkit after-death bereaved family member interview. Journal of Pain and Symptom Management, 22(3), 752-758. 

Wright, A. A., et al. (2008). Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA, 300(14):1665-1673.

Books

Brown, E., Chambers, E. J., & Eggeling, C. (2007). End of life care in nephrology: from advanced disease to bereavement. Oxford: Oxford University Press.

Chambers, E. J., Germain, M., and Brown, E. Supportive Care for the Renal Patient. Oxford: Oxford University Press.

Goldman, A., Hain, R., & Liben, S. (2006). Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press.

Kuebler, K. K., Heidrich, D. E., & Esper, P. (2007). Palliative and end-of-life care: Clinical practice guidelines. (2nd ed.). St. Louis, Missouri: Elsevier Health Sciences, Inc.