Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease

Chronic Illness

Volumn 11, Issue 1, 2015, Pages 44-55

  Allen, Dawn ^a   Badro, Valerie ^b   Denyer Willis, Laurie ^c   Ellen Macdonald, Mary ^c   Paré, Anthony ^a   Hutchinson, Tom ^d   Barré, Paul ^e   Beauchemin, Roch ^e   Bocti, Helen ^e   Broadbent, Alison ^e   Cohen, S Robin ^c,f  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^b Champlain Centre for Health Care Ethics   (Canada)

^c MCGILL UNIVERSITY   (Canada)

^d MCGILL UNIVERSITY   (Canada)

^e MCGILL UNIVERSITY HEALTH CENTRE   (Canada)

^f MCGILL UNIVERSITY   (Canada)

Author keywords

Co morbidity; decision making; fragmented care; whole person care

Indexed keywords

AGED; ARTICLE; BREAST CANCER; CANADA; CHRONIC DISEASE; CLINICAL ARTICLE; DIETITIAN; END STAGE RENAL DISEASE; FEMALE; HEMODIALYSIS; HUMAN; INTERVIEW; KIDNEY INJURY; MALE; MEDICAL SPECIALIST; MORBIDITY; NURSE; PATIENT CARE; PATIENT DECISION MAKING; SOCIAL WORKER; TEACHING HOSPITAL; ADULT; CHRONIC KIDNEY FAILURE; COMORBIDITY; DECISION MAKING; HEALTH SERVICE; MIDDLE AGED; PHILOSOPHY; PSYCHOLOGY;

ADULT; AGED; CANADA; CHRONIC DISEASE; COMORBIDITY; DECISION MAKING; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HOLISTIC HEALTH; HUMANS; KIDNEY FAILURE, CHRONIC; MALE; MIDDLE AGED;

EID: 84925658894     PISSN: 17423953     EISSN: 17459206     Source Type: Journal    
DOI: 10.1177/1742395314562974     Document Type: Article

References (36)

1. Information CIfH. Canadian Organ Replacement Register (CORR) Annual Report: Treatment of end-stage organ failure in Canada 2000-2009. 2011.
2. Allen D, Wainwright M, Hutchinson T. Non-compliance as illness management: Hemodialysis patients' descriptions of adversarial patient-clinician interactions. Soc Sci Med. 2011 ; 73: 129-134
3. de Bruin SR, Versnel N, Lemmens LC, et al. Comprehensive care programs for patients with multiple chronic conditions: A systematic literature review. Health Policy. 2012 ; 107 (2-3). 108-145
4. Shippee ND, Shah ND, May CR, et al. Cumulative complexity: A functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012 ; 65 (10). 1041-1051
5. Tinetti ME, Fried TR, Boyd CM. Designing health care for the most common chronic condition-multimorbidity. JAMA. 2012 ; 307 (23). 2493-2494
6. Montori VM, Gafni A, Charles CA. Shared treatment decision-making approach between patients with chronic conditions and their clinicians: The case of diabetes. Health Expect. 2006 ; 9: 25-36
7. Rapley T. Distributed decision making: The anatomy of decisions-in-action. Sociol Health Illn. 2008 ; 30 (3). 429-444
8. Epstein RG, Gramling RE. What is shared in shared decision-making? Complex decisions when the evidence is unclear. Med Care Res Rev. 2013 ; 70 (1). 94S-112S
9. Murray MA, Brunier G, Chung JO, et al. A systematic review of factors influencing decision-making in adults living with chronic kidney disease. Patient Educ Couns. 2009 ; 76 (2). 149-158
10. Wuerth DB, Finkelstein SH, Schwetz O, et al. Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis. Perit Dial Int. 2002 ; 22 (2). 184-190
11. McLaughlin K, Manns B, Mortis G, et al. Why patients with ESRD do not select self-care dialysis as a treatment option. Am J Kidney Dis. 2003 ; 41 (2). 380-385
12. Liang CH, Yang CY, Lu KC, et al. Factors affecting peritoneal dialysis selection in Taiwanese patients with chronic kidney disease. Int Nurs Rev. 2011 ; 58 (4). 463-469
13. Sheu J, Ephraim PL, Powe NR, et al. African American and non-African American patients' and families' decision making about renal replacement therapies. Qual Health Res. 2012 ; 22 (7). 997-1006
14. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ. 2006 ; 333 (7574). 886-886
15. Holley JL, Davison SN, Moss AH. Nephrologists' changing practices in reported end-of-life decision-making. Clin J Am Soc Nephrol. 2007 ; 2 (1). 107-111
16. Siegel AM The decision for advance directives among persons with end-stage renal disease. Washington, DC: Doctoral Dissertation, Catholic University of America ; 2006 :
17. Morton RL, Snelling P, Webster AC, et al. Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease. Can Med Assoc J. 2012 ; 184 (5). E277-E283
18. Moss AH. Ethical principles and processes guiding dialysis decision-making. Clin J Am Soc Nephrol. 2011 ; 6 (9). 2313-2317
19. Aasen EM, Kvangarsnes M, Heggen K. Perceptions of patient participation amongst elderly patients with end-stage renal disease in a dialysis unit. Scand J Caring Sci. 2012 ; 26 (1). 61-69
20. Lin C-C, Wu C-C, Anderson RM, et al the chronic kidney disease self-efficacy (CKD-SE) instrument: Development and psychometric evaluation. Nephrol Dial Transplant. 2012 ; 27 (10). 3828-3834
21. Martino S. Motivational interviewing to engage patients in chronic kidney disease management. Blood Purif. 2011 ; 31 (1-3). 77-81
22. Eskridge MS. Hypertension and chronic kidney disease: The role of lifestyle modification and medication management. Nephrol Nurs J. 2010 ; 37 (1). 55-60, 99
23. Choi ES, Lee J. Effects of a face-to-face self-management program on knowledge, self-care practice and kidney function in patients with chronic kidney disease before the renal replacement therapy. J Korean Acad Nurs. 2012 ; 42 (7). 1070-1078
24. Piccoli GB, Ferraresi M, Murciano A, et al. Home dialysis and the Internet: Designing an e-learning platform via brainstorming sessions. J Nephrol. 2012 ; 25 (6). 926-932
25. Byrne J, Khunti K, Stone M, et al. Feasibility of a structured group education session to improve self-management of blood pressure in people with chronic kidney disease: An open randomised pilot trial. BMJ Open. 2011 ; 1 (2). e000381-e000381
26. Morse JF, Field P Qualitative research methods of health professionals. 2 nd ed. Thousand Oaks, CA: Sage Publications, 1995. Thousand Oaks, CA: Sage Publications ; 1995 :
27. Savage J. Ethnographic evidence: The value of applied ethnography in health care. J Res Nurs. 2006 ; 11 (5). 383-393
28. Benner PE Interpretive phenomenology: Embodiment, caring, and ethics in health and illness. Thousand Oaks, CA: Sage Publications ; 1994 :
29. Ayres L, Kavanaugh K, Knafl KA. Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003 ; 13 (6). 871-883
30. Rastogi A, Linden A, Nissenson AR. Disease management in chronic kidney disease. Adv Chronic Kidney Dis. 2008 ; 15 (1). 19-28
31. Erler A, Bodenheimer T, Baker R, et al. Preparing primary care for the future?-?perspectives from the Netherlands, England, and USA. Z Evid Fortbild Qual Gesundhwes. 2011 ; 105 (8). 571-580
32. Nolte E, McKee M Caring for people with chronic conditions: A health system perspective. Maidenhead, UK: Open University Press/McGraw-Hill Education ; 2008 :
33. Frankel RM, Eddins-Folensbee F, Inui TS. Crossing the patient-centered divide: Transforming health care quality through enhanced faculty development. Acad Med. 2011 ; 86 (4). 445-452
34. Hutchinson TA Whole person care: A new paradigm for the 21st century. New York: Springer ; 2011 :
35. Miles A, Mezzich J the care of the patient and the soul of the clinic: Person-centered mediciine as an emergent model of modern clinical practice. Int J Person-Centered Med. 2011 ; 1 (2). 207-222
36. Cassell EJ The nature of healing the modern practice of medicine. Oxford: NY: Oxford University Press ; 2013 :