United States Renal Data System (USRDS).USRDS 2009 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States.Bethesda (MD): National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2009.
2.
DavisonS.N., JhangriG.S.Existential and religious dimensions of spirituality and their relationship with health-related quality of life in chronic kidney disease.Clin J Am Soc Nephrol2010; 5(11): 1969–1976.
3.
DavisonS.N., JhangriG.S.Existential and supportive care needs among patients with chronic kidney disease.J Pain Symptom Manag2010; 40(6): 838–843.
4.
ChaterS., DavisonS.N., GermainM.J.Withdrawal from dialysis: a palliative care perspective.Clin Nephrol2006; 66(5): 364–372.
5.
DavisonS.N.Pain in hemodialysis patients: prevalence, cause, severity, and management.Am J Kidney Dis2003; 42(6): 1239–1247.
6.
DavisonS.N., JhangriG.S., JohnsonJ.A.Cross-sectional validity of a modified Edmonton Symptom Assessment System in dialysis patients: a simple assessment of symptom burden.Kidney Int2006; 69(9): 1621–1625.
7.
WeisbordS.D., FriedL.F., ArnoldR.M.Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients.J Am Soc Nephrol2005; 16(8): 2487–2494.
8.
MurtaghF.E., Addington-HallJ., HigginsonI.J.The prevalence of symptoms in end-stage renal disease: a systematic review.Adv Chronic Kidney Dis2007; 14(1): 82–99.
9.
SainiT., MurtaghF.E., DupontP.J.Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease.Palliat Med2006; 20(6): 631–636.
10.
SekkarieM.A., MossA.H.Withholding and withdrawing dialysis: the role of physician speciality and education and patient functional status.Am J Kidney Dis1998; 31(3): 464–472.
11.
MurrayA.M., ArkoC., ChenS.C.Use of hospice in the United States dialysis population.Clin J Am Soc Nephrol2006; 1(6): 1248–1255.
12.
DavisonS.N.End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.Clin J Am Soc Nephrol2010; 5(2): 195–204.
13.
ChambersE.J., BrownE., GermainM. editors. Supportive care for the renal patient.2nd ed.Oxford: Oxford University Press; 2010.
14.
Renal Physicians Association (RPA).Shared decision-making in the appropriate initiation of and withdrawal from dialysis.Rockville (MD): RPA; 2000.
15.
DavisonS.N., JhangriG.S., HolleyJ.L.Nephrologists’ reported preparedness for end-of-life decision-making.Clin J Am Soc Nephrol2006; 1(6): 1256–1262.
16.
GommS., FarringtonK.End of life care in advanced kidney disease: a framework for implementation.Sudbury (UK): Prolog, NHS Kidney Care, National End of Life Care Progamme; 2009.
17.
HolleyJ.L., DavisonS.N., MossA.H.Nephrologists’ changing practices in reported end-of-life decision-making.Clin J Am Soc Nephrol2007; 2(1): 107–111.
18.
LunneyJ.R., LynnJ., FoleyD.J.Patterns of functional decline at the end of life.JAMA2003; 289(18): 2387–2392.
19.
GillT.M., GahbauerE.A., HanL.Trajectories of disability in the last year of life.N Engl J Med2010; 362(13): 1173–1180.
20.
ThomasK.The Gold Standards Framework: prognostic indicator guidance paper.London: Department of Health; 2009. Available from: www.goldstandardsframework.nhs.uk/ [Once on the site, search term “prognostic indicator guidance”.]
21.
BeddhuS., BrunsF.J., SaulM.A simple comorbidity scale predicts clinical outcomes and costs in dialysis patients.Am J Med2000; 108(8): 609–613.
22.
HemmelgarnB.R., MannsB.J., QuanH.Adapting the Charlson Comorbidity Index for use in patients with ESRD.Am J Kidney Dis2003; 42(1): 125–132.
23.
WeisbordS.D., CarmodyS.S., BrunsF.J.Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients.Nephrol Dial Transplant2003; 18(7): 1345–1352.
24.
MossA.H., GanjooJ., SharmaS.Utility of the “surprise” question to identify dialysis patients with high mortality.Clin J Am Soc Nephrol2008; 3(5): 1379–1384.
25.
CohenL.M., RuthaznerR., MossA.H., GermainM.J.Predicting six-month mortality for patients who are on maintenance hemodialysis.Clin J Am Soc Nephrol2010; 5(1): 72–79.
26.
CouchoudC., LabeeuwM., MoranneO.A clinical score to predict 6-month prognosis in elderly patients starting dialysis for end-stage renal disease.Nephrol Dial Transplant2009; 24(5): 1553–1561.
27.
IfuduO., PaulH.R., HomelP.Predictive value of functional status for mortality in patients on maintenance hemodialysis.Am J Nephrol1998; 18(2): 109–116.
28.
GillT.M., HardyS.E., WilliamsC.S.Underestimation of disability in community-living older persons.J Am Geriatr Soc2002; 50(9): 1492–1497.
29.
MurphyE.L., MurtaghF.E., CareyI.Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: use of a short patient-completed assessment tool.Nephron Clin Pract2008; 111(1): c74–c80.
30.
Abdel-KaderK., UnruhM.L., WeisbordS.D.Symptom burden, depression, and quality of life in chronic and end-stage kidney disease.Clin J Am Soc Nephrol2009; 4(6): 1057–1064.
31.
WeisbordS.D., FriedL.F., MorM.K.Renal provider recognition of symptoms in patients on maintenance hemodialysis.Clin J Am Soc Nephrol2007; 2(5): 960–967.
32.
BailieG.R., MasonN.A., Bragg-GreshamJ.L.Analgesic prescription patterns among hemodialysis patients in the DOPPS: potential for underprescription.Kidney Int2004; 65(6): 2419–2425.
33.
DavisonS.N.Chronic kidney disease: psychosocial impact of chronic pain.Geriatrics2007; 62(2): 17–23.
34.
KimmelP.L., EmontS.L., NewmannJ.M.ESRD patient quality of life: symptoms, spiritual beliefs, psychosocial factors, and ethnicity.Am J Kidney Dis2003; 42(4): 713–721.
35.
DavisonS.N., JhangriG.S.The impact of chronic pain on depression, sleep, and the desire to withdraw from dialysis in hemodialysis patients.J Pain Symptom Manag2005; 30(5): 465–473.
36.
DavisonS.N., JhangriG.S., JohnsonJ.A.Longitudinal validation of a modified Edmonton Symptom Assessment System (ESAS) in haemodialysis patients.Nephrol Dial Transplant2006; 21(11): 3189–3195.
37.
ChangV.T., HwangS.S., FeuermanM.Validation of the Edmonton Symptom Assessment Scale.Cancer2000; 88(9): 2164–2171.
38.
LopesA.A., ElderS., GinsbergN.Lack of appetite in hemodialysis patients: associations with patient characteristics, indicators of nutritional status, and outcomes in the international DOPPS.Nephrol Dial Transplant2007; 22(12): 3538–3546.
39.
LopesA.A., BraggJ., YoungEDepression as a predictor of mortality and hospitalization among hemodialysis patients in the United States and Europe.Kidney Int2002; 62(1): 199–207.
40.
Kurella TamuraM., CovinskyK.E., ChertowG.M.Functional status of elderly adults before and after initiation of dialysis.N Engl J Med2009; 361(16): 1539–1547.
41.
MurtaghF.E., MarshJ.E., DonohoeP.Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5.Nephrol Dial Transplant2007; 22(7): 1955–1962.
42.
CarsonR.C., JuszczakM., DavenportA.Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease?Clin J Am Soc Nephrol2009; 4(10): 1611–1619.
43.
JohansenK.L., ChertowG.M., JinC.Significance of frailty among dialysis patients.J Am Soc Nephrol2007; 18(11): 2960–2967.
44.
JassalS.V., ChiuE., HladunewichM.Loss of independence in patients starting dialysis at 80 years of age or older.N Engl J Med2009; 361(16): 1612–1613.
45.
GillT.M., AlloreH.G., HolfordT.R.Hospitalization, restricted activity, and the development of disability among older persons.JAMA2004; 292(17): 2115–2124.
PhillipsL., DaviesS.J., WhiteE.Health-related quality of life assessment in end-stage renal failure.Nurs Times Res2001; 6(3): 658–670.
48.
Renal Physicians Association (RPA),Clinical Practice Guidelines Revision Working Group. Shared decision-making in the appropriate initiation of and withdrawal from dialysis.2nd ed.Rockville (MD): RPA; 2010.
49.
FineA., FontaineB., KrausharM.M.Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study.Perit Dial Int2005; 25(3): 269–273.
50.
MossA.H., HolleyJ.L., UptonM.B.Outcomes of cardiopulmonary resuscitation in dialysis patients.J Am Soc Nephrol1992; 3(6): 1238–1243.
51.
MossA.H., HozayenO., KingK.Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit.Am J Kidney Dis2001; 38(4): 847–852.
52.
CohenL.M., GermainM., WoodsA.Patient attitudes and psychological considerations in dialysis discontinuation.Psychosomatics1993; 34(5): 395–401.
53.
HolleyJ.L., HinesS.C., GloverJ.J.Failure of advance care planning to elicit patients’ preferences for withdrawal from dialysis.Am J Kidney Dis1999; 33(4): 688–693.
54.
PerryE., SwartzJ., BrownS.Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients.Am J Kidney Dis2005; 46(1): 111–119.
55.
HinesS.C., GloverJ.J., BabrowA.S.Improving advance care planning by accommodating family preferences.J Palliat Med2001; 4(4): 481–489.
56.
PruchnoR.A., LemayEPJr.Predictors of patient treatment preferences and spouse substituted judgments: the case of dialysis continuation.Med Decis Making2006; 26(2): 112–121.
57.
MiuraY., AsaiA., MatsushimaMFamilies’ and physicians’ predictions of dialysis patients’ preferences regarding life-sustaining treatments in Japan.Am J Kidney Dis2006; 47(1): 122–130.
DavisonS.N., SimpsonC.Hope and advance care planning in patients with end stage renal disease: qualitative interview study.BMJ2006; 333(7574): 886.
60.
SehgalA., GalbraithA., ChesneyM.How strictly do dialysis patients want their advance directives followed?JAMA1992; 267(1): 59–63.
61.
PfeiferM.P., SidorovJ.E., SmithA.C.The discussion of end-of-life medical care by primary care patients and physicians: a multicenter study using structured qualitative interviews. EOL Study Group.J Gen Intern Med1994; 9(2): 82–88.
62.
TulskyJ.A., FischerG.S., RoseM.R.Opening the black box: how do physicians communicate about advance directives?Ann Intern Med1998; 129(6): 441–449.
63.
HolleyJ.L., CarmodyS.S., MossA.H.The need for end-of-life care training in nephrology: national survey results of nephrology fellows.Am J Kidney Dis2003; 42(4): 813–820.
64.
DavisonS.N.Facilitating advance care planning for patients with end-stage renal disease: the patient perspective.Clin J Am Soc Nephrol2006; 1(5): 1023–1028.
65.
DavisonS.N., TorgunrudC.The creation of an advance care planning process for patients with ESRD.Am J Kidney Dis2007; 49(1): 27–36.
MurrayA.M., TupperD.E., KnopmanD.S.Cognitive impairment in hemodialysis patients is common.Neurology2006; 67(2): 216–223.
69.
DavisonS.N.Quality end-of-life care in dialysis units.Semin Dial2002; 15(1): 41–44.
70.
HickmanS.E., TolleS.W., Brummel-SmithK.Use of the Physician Orders for Life-Sustaining Treatment program in Oregon nursing facilities: beyond resuscitation status.J Am Geriatr Soc2004; 52(9): 1424–1429.
71.
TolleS.W., TildenV.P., NelsonC.A.A prospective study of the efficacy of the physician order form for life-sustaining treatment.J Am Geriatr Soc1998; 46(9): 1097–1102.
72.
DeteringK.M., HancockA.D., ReadeM.C.The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.BMJ2010; 340: c1345.
73.
KirchhoffK.T., HammesB.J., KehlK.A.Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.J Am Geriatr Soc2010; 58(7): 1233–1240.
74.
Mid-Atlantic Renal Coalition (MARC),Kidney End-of-Life Coalition. Clinical algorithm and preferred medications to treat pain in dialysis patients.Midlothian (VA): MARC; 2009.
DouglasC., MurtaghF.E., ChambersE.J.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.Palliat Med2009; 23(2): 103–110.
77.
ThompsonK.F., BhargavaJ., BachelderR.Hospice and ESRD: knowledge deficits and underutilization of program benefits.Nephrol Nurs J2008; 35(5): 461–466.