American Journal of Kidney Diseases

Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

Published:January 06, 2012DOI:


      Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy.


      We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question.


      We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations.


      Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

      Index Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to American Journal of Kidney Diseases
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • US Renal Data System
        USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States.
        National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD2010
        • Kurella M.
        • Covinsky K.E.
        • Collins A.J.
        • Chertow G.M.
        Octogenarians and nonagenarians starting dialysis in the United States.
        Ann Intern Med. 2007; 146: 177-183
        • Lunney J.R.
        • Lynn J.
        • Foley D.J.
        • Lipson S.
        • Guralnik J.M.
        Patterns of functional decline at the end of life.
        JAMA. 2003; 289: 2387-2392
        • Abdel-Kader K.
        • Unruh M.L.
        • Weisbord S.D.
        Symptom burden, depression, and quality of life in chronic and end-stage kidney disease.
        Clin J Am Soc Nephrol. 2009; 4: 1057-1064
        • Cukor D.
        • Cohen S.D.
        • Peterson R.A.
        • Kimmel P.L.
        Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness.
        J Am Soc Nephrol. 2007; 18: 3042-3055
        • Cukor D.
        • Coplan J.
        • Brown C.
        • et al.
        Anxiety disorders in adults treated by hemodialysis: a single-center study.
        Am J Kidney Dis. 2008; 52: 128-136
        • Davison S.N.
        • Jhangri G.S.
        Existential and supportive care needs among patients with chronic kidney disease.
        J Pain Symptom Manage. 2010; 40: 838-843
        • Weisbord S.D.
        • Fried L.F.
        • Arnold R.M.
        • et al.
        Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients.
        J Am Soc Nephrol. 2005; 16: 2487-2494
        • Hemodialysis Adequacy 2006 Work Group
        Clinical practice guidelines for hemodialysis adequacy, update 2006.
        Am J Kidney Dis. 2006; 48: S2-S90
        • Fogarty L.A.
        • Curbow B.A.
        • Wingard J.R.
        • McDonnell K.
        • Somerfield M.R.
        Can 40 seconds of compassion reduce patient anxiety?.
        J Clin Oncol. 1999; 17: 371-379
        • Roter D.L.
        • Hall J.A.
        • Kern D.E.
        • Barker L.R.
        • Cole K.A.
        • Roca R.P.
        Improving physicians' interviewing skills and reducing patients' emotional distress.
        Arch Intern Med. 1995; 155: 1877-1884
        • Strauss A.
        • Corbin J.
        Basics of Qualitative Research.
        Sage Publications, Newbury Park, CA1990
        • Mays N.
        • Pope C.
        Rigour and qualitative research.
        BMJ. 1995; 311: 109-112
        • Russ A.J.
        • Shim J.K.
        • Kaufman S.R.
        The value of “life at any cost”: talk about stopping kidney dialysis.
        Soc Sci Med. 2007; 64: 2236-2247
        • Russ A.J.
        • Shim J.K.
        • Kaufman S.R.
        “Is there life on dialysis?”: time and aging in a clinically sustained existence.
        Med Anthropol. 2005; 24: 297-324
        • Giacomini M.K.
        • Cook D.J.
        Users' guides to the medical literature: XXIII.
        JAMA. 2000; 284: 478-482
        • Glaser B.
        • Strauss A.
        The Discovery of Grounded Theory: Strategies for Qualitative Research.
        Aldine Publishing Co, Chicago, IL1967
        • Detmar S.B.
        • Muller M.J.
        • Wever L.D.
        • Schornagel J.H.
        • Aaronson N.K.
        The patient-physician relationship.
        JAMA. 2001; 285: 1351-1357
        • Ford S.
        • Fallowfield L.
        • Lewis S.
        Can oncologists detect distress in their out-patients and how satisfied are they with their performance during bad news consultations?.
        Br J Cancer. 1994; 70: 767-770
        • Anderson W.G.
        • Alexander S.C.
        • Rodriguez K.L.
        • et al.
        “What concerns me is …” Expression of emotion by advanced cancer patients during outpatient visits.
        Support Care Cancer. 2008; 16: 803-811
        • Ryan H.
        • Schofield P.
        • Cockburn J.
        • et al.
        How to recognize and manage psychological distress in cancer patients.
        Eur J Cancer Care (Engl). 2005; 14: 7-15
        • Lok P.
        Stressors, coping mechanisms and quality of life among dialysis patients in Australia.
        J Adv Nurs. 1996; 23: 873-881
        • Tong A.
        • Sainsbury P.
        • Chadban S.
        • et al.
        Patients' experiences and perspectives of living with CKD.
        Am J Kidney Dis. 2009; 53: 689-700
        • Wright A.A.
        • Zhang B.
        • Ray A.
        • et al.
        Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
        JAMA. 2008; 300: 1665-1673
        • Davison S.N.
        • Torgunrud C.
        The creation of an advance care planning process for patients with ESRD.
        Am J Kidney Dis. 2007; 49: 27-36
        • Holley J.L.
        Palliative care in end-stage renal disease: illness trajectories, communication, and hospice use.
        Adv Chronic Kidney Dis. 2007; 14: 402-408
        • Renal Physicians Association
        (Section 9. Toolkit: Tool #11)Shared Decision-Making in the Appropriate Initiation of and Withdrawal of Dialysis. 2nd ed. Renal Physicians Association, Rockville, MD2010: 152-153
        • Back A.L.
        • Anderson W.G.
        • Bunch L.
        • et al.
        Communication about cancer near the end of life.
        Cancer. 2008; 113: 1897-1910
        • Back A.L.
        • Arnold R.M.
        • Tulsky J.A.
        Mastering Communication With Seriously Ill Patients: Balancing Honesty With Empathy and Hope.
        Cambridge University Press, New York, NY2009
        • Pollak K.I.
        • Arnold R.M.
        • Jeffreys A.S.
        • et al.
        Oncologist communication about emotion during visits with patients with advanced cancer.
        J Clin Oncol. 2007; 25: 5748-5752
        • Suchman A.L.
        • Markakis K.
        • Beckman H.B.
        • Frankel R.
        A model of empathic communication in the medical interview.
        JAMA. 1997; 277: 678-682
        • Baile W.F.
        • Lenzi R.
        • Parker P.A.
        • Buckman R.
        • Cohen L.
        Oncologists' attitudes toward and practices in giving bad news: an exploratory study.
        J Clin Oncol. 2002; 20: 2189-2196
        • Evans W.G.
        • Tulsky J.A.
        • Back A.L.
        • Arnold R.M.
        Communication at times of transitions: how to help patients cope with loss and re-define hope.
        Cancer J. 2006; 12: 417-424
        • Knauft E.
        • Nielsen E.L.
        • Engelberg R.A.
        • Patrick D.L.
        • Curtis J.R.
        Barriers and facilitators to end-of-life care communication for patients with COPD.
        Chest. 2005; 127: 2188-2196
        • Reinke L.F.
        • Engelberg R.A.
        • Shannon S.E.
        • et al.
        Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians.
        J Palliat Med. 2008; 11: 601-609
        • Back A.L.
        • Arnold R.M.
        • Quill T.E.
        Hope for the best, and prepare for the worst.
        Ann Intern Med. 2003; 138: 439-443
        • Davison S.N.
        End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.
        Clin J Am Soc Nephrol. 2010; 5: 195-204
        • Fine A.
        • Fontaine B.
        • Kraushar M.M.
        • Rich B.R.
        Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study.
        Perit Dial Int. 2005; 25: 269-273
        • Butow P.N.
        • Dowsett S.
        • Hagerty R.
        • Tattersall M.H.
        Communicating prognosis to patients with metastatic disease: what do they really want to know?.
        Support Care Cancer. 2002; 10: 161-168
        • Wenrich M.D.
        • Curtis J.R.
        • Shannon S.E.
        • Carline J.D.
        • Ambrozy D.M.
        • Ramsey P.G.
        Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death.
        Arch Intern Med. 2001; 161: 868-874
        • Goodlin S.J.
        • Quill T.E.
        • Arnold R.M.
        Communication and decision-making about prognosis in heart failure care.
        J Card Fail. 2008; 14: 106-113
        • Heisler M.
        • Cole I.
        • Weir D.
        • Kerr E.A.
        • Hayward R.A.
        Does physician communication influence older patients' diabetes self-management and glycemic control?.
        J Gerontol A Biol Sci Med Sci. 2007; 62: 1435-1442
        • Heyland D.K.
        • Allan D.E.
        • Rocker G.
        • Dodek P.
        • Pichora D.
        • Gafni A.
        Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care.
        Open Med. 2009; 3: e101-e110
        • Germain M.J.
        • Kurella Tamura M.
        • Davison S.N.
        Palliative care in CKD: the earlier the better.
        Am J Kidney Dis. 2011; 57: 378-380
        • Germain M.J.
        • Davison S.N.
        • Moss A.H.
        When enough is enough: the nephrologist's responsibility in ordering dialysis treatments.
        Am J Kidney Dis. 2011; 58: 135-143