Hogan C, Lynn J, Gabel J, Lunney J, Mara A, Wilkinson A. Medicare beneficiaries' costs and use of care in the last year of life. Washington, DC: The Medicare Payment Advisory Commission. 2000.

Center for Disease Control. Deaths: Preliminary Data for 2002. http://www​.cdc.gov/nchs​/releases/04news/infantmort.htm. Accessed February 18, 2004. [PubMed: 14998175]

Institute for the Future. Health and Healthcare 2010: The Forecast, The Challenge. Princeton, NJ: Jossey-Bass; 2003.

Kaye S, LaPlante MP, Carlson D, Wenger BL. Trends in disability rates in the United States, 1970-1994. Washington, DC: U.S. Department of Health and Human Services. 1996.

Anderson G, Horvarth J, Anderson C. Chronic conditions: Making the case for ongoing care. Baltimore, MD. 2002.

Freedman V A, Aykan H, Martin L G. Aggregate changes in severe cognitive impairment among older Americans: 1993 and 1998. J Gerontol B Psychol Sci Soc Sci. 2001;56(2):S100–11. [PubMed: 11245364]

Freedman V A, Martin L G. Understanding trends in functional limitations among older Americans. Am J Public Health. 1998;88(10):1457–62. [PMC free article: PMC1508476] [PubMed: 9772844]

Gill T M, Desai M M, Gahbauer E A. et al. Restricted activity among community-living older persons: incidence, precipitants, and health care utilization. Ann Intern Med. 2001;135(5):313–21. [PubMed: 11529694]

Fried L P, Guralnik J M. Disability in older adults: evidence regarding significance, etiology, and risk. J Am Geriatr Soc. 1997;45(1):92–100. [PubMed: 8994496]

Sharma R, Chan S, Liu H, Ginsberg C. Health and health care of the Medicare population: Data from the 1997 Medicare current beneficiary survey. Rockville, MD: Westat. 2001.

Manton K G, Corder L S, Stallard E. Estimates of change in chronic disability and institutional incidence and prevalence rates in the U.S. elderly population from the 1982, 1984, and 1989 National Long Term Care Survey. J Gerontol. 1993;48(4):S153–66. [PubMed: 8315240]

Carter G T, Bednar-Butler L M, Abresch R T. et al. Expanding the role of hospice care in amyotrophic lateral sclerosis. Am J Hosp Palliat Care 1999;16(6):707–10. Comment in: Am J Hosp Palliat Care. 1999 Nov-Dec;16(6):696–7. PMID: 11094904. [PubMed: 11094907]

Cornoni-Huntley J C, Foley D J, White L R. et al. Epidemiology of disability in the oldest old: methodologic issues and preliminary findings. Milbank Mem Fund Q Health Soc. 1985;63(2):350–76. [PubMed: 3158841]

U.S. Census Bureau. Projections of the resident population by age, sex, race, and Hispanic origin: 1999 to 2100. Washington, DC: U.S. Department of Commerce. Internet release NP-D1-A. http://www.census.gov/population/www/projections/natdet-DIA.html. 2000.

Freedman V A, Martin L G, Schoeni R F. Recent trends in disability and functioning among older adults in the United States: a systematic review. JAMA. 2002;288(24):3137–46. [PubMed: 12495394]

Alemayehu B, Warner K E. The lifetime distribution of health care costs. Health Serv Res. 2004;39(3):627–42. [PMC free article: PMC1361028] [PubMed: 15149482]

Yang Z, Norton E C, Stearns S C. Longevity and health care expenditures: the real reasons older people spend more. J Gerontol B Psychol Sci Soc Sci. 2003;58(1):S2–10. [PubMed: 12496303]

Hoover D R, Crystal S, Kumar R. et al. Medical expenditures during the last year of life: findings from the 1992-1996 Medicare current beneficiary survey. Health Serv Res. 2002;37(6):1625–42. [PMC free article: PMC1464043] [PubMed: 12546289]

Shugarman L R, Campbell D E, Bird C E. et al. Differences in Medicare expenditures during the last 3 years of life. J Gen Intern Med. 2004;19(2):127–35. [PMC free article: PMC1492140] [PubMed: 15009792]

Lubitz J, Cai L, Kramarow E. et al. Health, life expectancy, and health care spending among the elderly. N Engl J Med. 2003;349(11):1048–55. [PubMed: 12968089]

George LK. Research design in end-of-life research: state of science. Gerontologist 2002;42 Spec No 3:86–98. [PubMed: 12415138]

Patrick D L, Curtis J R, Engelberg R A. et al. Measuring and improving the quality of dying and death. Ann Intern Med. 2003;139(5 Pt 2):410–5. [PubMed: 12965967]

Hanson L C, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc. 1997;45(11):1339–44. [PubMed: 9361659]

Singer P A, Martin D K, Kelner M. Quality end-of-life care: patients' perspectives. JAMA 199;281( 2):163–8. Comment in: JAMA. 1999 Apr 28;281(16):1488. PMID: 10227311. [PubMed: 9917120]

Steinhauser K E, Christakis N A, Clipp E C. et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727–37. [PubMed: 11532586]

Steinhauser K E, Christakis N A, Clipp E C. et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82. [PubMed: 11074777]

Teno J M, Clarridge B R, Casey V. et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291(1):88–93. Comment in:JAMA. 2004 Mar 24;291(12):1445–6. author reply 1446. PMID: 15039410. [PubMed: 14709580]

Pierson C M, Curtis J R, Patrick D L. A good death: a qualitative study of patients with advanced AIDS. AIDS Care. 2002;14(5):587–98. [PubMed: 12419108]

Wenrich M D, Curtis J R, Ambrozy D A. et al. Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers. J Pain Symptom Manage. 2003;25(3):236–46. [PubMed: 12614958]

Teno J. TIME: Toolkit of Instruments to Measure End-of-life Care. available at URL: http://www​.chcr.brown​.edu/pcoc/toolkit.htm. Accessed 8/6/2004.

Teno J M, Clarridge B, Casey V. et al. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage. 2001;22(3):752–8. [PubMed: 11532588]

National Cancer Policy Board. Improving palliative care for cancer: Summary and recommendations. Washington, DC: Institute of Medicine; 2001.

Institute of Medicine. Approaching death: Improving care at the end of life. Washington DC: National Academies Press; 1997. [PubMed: 25121204]

Carr D, Goudas L, Lawrence D, et. al. Management of cancer symptoms: pain, depression, and fatigue. Evidence report/technology assessment No. 61 (Prepared by the New England Medical Center Evidence-based Practice Center under Contract No 290-97-0019). AHRQ Publication No. 02-E032. Rockville, MD: Agency for Health Care Research and Quality. July 2002. [PMC free article: PMC4781249] [PubMed: 12187571]

Institute of Medicine. 1st Annual Crossing the Quality Chasm Summit; In Press. Expected Sept 2004: 2004.

Cleeland C S, Gonin R, Hatfield A K. et al. Pain and its treatment in outpatients with metastatic cancer. N Engl J Med. 1994;330(9):592–6. [PubMed: 7508092]

Morrison R S, Wallenstein S, Natale D K. et al. “We don't carry that”--failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. N Engl J Med. 2000;342(14):1023–6. [PubMed: 10749965]

Levenson J W, McCarthy E P, Lynn J. et al. The last six months of life for patients with congestive heart failure. J Am Geriatr Soc. 2000;48(5 Suppl):S101–9. [PubMed: 10809463]

Lynn J, Teno J M, Phillips R S. et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997;126(2):97–106. Comment in: Ann Intern Med. 1997 Aug 1;127(3):242–3. PMID: 9245235. Comment in: Ann Intern Med. 1997 Aug 1;127(3):242; author reply 243. PMID: 9245234. Comment in: Ann Intern Med. 1997 Aug 1;127(3):243. PMID: 9245236. Comment in: Ann Intern Med. 1. [PubMed: 9005760]

Claessens M T, Lynn J, Zhong Z. et al. Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc. 2000;48(5 Suppl):S146–53. [PubMed: 10809468]

Gore J M, Brophy C J, Greenstone M A. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer Thorax 2000;55(12):1000–6. Comment in:Thorax. 2000 Dec;55(12):979–81. PMID: 11083879. [PMC free article: PMC1745647] [PubMed: 11083884]

Lloyd-Williams M, Dennis M, Taylor F. et al. Is asking patients in palliative care, “are you depressed?” Appropriate? Prospective study. BMJ. 2003;327(7411):372–3. [PMC free article: PMC175105] [PubMed: 12919988]

NIH State-of-the-Science Statement on symptom management in cancer: pain, depression, and fatigue. NIH Consens State Sci Statements 2002;19(4):1–29. [PubMed: 14984106]

Hart D J, Craig D, Compton S A. et al. A retrospective study of the behavioural and psychological symptoms of mid and late phase Alzheimer's disease. Int J Geriatr Psychiatry. 2003;18(11):1037–42. [PubMed: 14618556]

Bartels S J, Horn S D, Smout R J. et al. Agitation and depression in frail nursing home elderly patients with dementia: treatment characteristics and service use. Am J Geriatr Psychiatry. 2003;11(2):231–8. [PubMed: 12611753]

Wolfson C, Wolfson D B, Asgharian M. et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med. 2001;344(15):1111–6. [PubMed: 11297701]

Yamamoto-Mitani N, Aneshensel C S, Levy-Storms L. Patterns of family visiting with institutionalized elders: the case of dementia. J Gerontol B Psychol Sci Soc Sci. 2002;57(4):S234–46. [PubMed: 12084793]

Tornatore J B, Grant L A. Burden among family caregivers of persons with Alzheimer's disease in nursing homes. Gerontologist. 2002;42(4):497–506. [PubMed: 12145377]

Schulz R, Belle S H, Czaja S J. et al. Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292(8):961–7. [PubMed: 15328328]

Emanuel E J, Fairclough D L, Slutsman J. et al. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Annals of Internal Medicine. 2000;132(6):451–9. [PubMed: 10733444]

Covinsky K E, Goldman L, Cook E F. et al. The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA. 1994;272(23):1839–44. [PubMed: 7990218]

Emanuel E J, Fairclough D L, Slutsman J. et al. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med. 2000;132(6):451–9. [PubMed: 10733444]

Himmelstein D U, Thorne D, Warren E. et al. Medical Bankruptcy. J Gen Intern Med. 2003;18(Supp 1):221.

Covinsky K E, Landefeld C S, Teno J. et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? SUPPORT Investigators. Arch Intern Med. 1996;156(15):1737–41. [PubMed: 8694674]

Haggerty J L, Reid R J, Freeman G K. et al. Continuity of care: a multidisciplinary review. BMJ. 2003;327(7425):1219–21. [PMC free article: PMC274066] [PubMed: 14630762]

Boockvar K, Fishman E, Kyriacou C K. et al. Adverse events due to discontinuations in drug use and dose changes in patients transferred between acute and long-term care facilities. Arch Intern Med. 2004;164(5):545–50. [PubMed: 15006832]

Saliba D, Kington R, Buchanan J. et al. Appropriateness of the decision to transfer nursing facility residents to the hospital. J Am Geriatr Soc. 2000;48(2):154–63. [PubMed: 10682944]

Intrator O, Castle N G, Mor V. Facility characteristics associated with hospitalization of nursing home residents: results of a national study. Med Care. 1999;37(3):228–37. [PubMed: 10098567]

Teno J M, Clarridge B R, Casey V. et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88–93. [PubMed: 14709580]

Teno J M, Lynn J. Putting advance-care planning into action. J Clin Ethics. 1996;7(3):205–13. [PubMed: 8981191]

Gillick M R. Advance care planning. N Engl J Med. 2004;350(1):7–8. [PubMed: 14702421]

Lunney J R, Lynn J, Foley D J. et al. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–92. [PubMed: 12746362]

Teno J M, Weitzen S, Fennell M L. et al. Dying trajectory in the last year of life: does cancer trajectory fit other diseases? J Palliat Med. 2001;4(4):457–64. [PubMed: 11798477]

Knaus W A, Harrell F E Jr, Lynn J. et al. The SUPPORT prognostic model. Objective estimates of survival for seriously ill hospitalized adults. Study to understand prognoses and preferences for outcomes and risks of treatments. Ann Intern Med. 1995;122(3):191–203. [PubMed: 7810938]

Covinsky K E, Eng C, Lui L Y. et al. The last 2 years of life: functional trajectories of frail older people. J Am Geriatr Soc. 2003;51(4):492–8. [PubMed: 12657068]

Finlay I G, Higginson I J, Goodwin D M. et al. Palliative care in hospital, hospice, at home: results from a systematic review. Ann Oncol. 2002;13(Suppl 4):257–64. [PubMed: 12401699]

Hearn J, Higginson I J. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med. 1998;12(5):317–32. [PubMed: 9924595]

Allard P, Maunsell E, Labbe J. et al. Educational interventions to improve cancer pain control: a systematic review. J Palliat Med. 2001;4(2):191–203. [PubMed: 11441627]

Devine E C. Meta-analysis of the effect of psychoeducational interventions on pain in adults with cancer. Oncol Nurs Forum. 2003;30(1):75–89. [PubMed: 12515986]

Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995;311(7001):376–80. [PMC free article: PMC2550437] [PubMed: 7640549]

Donabedian A. Explorations in Quality Assessment and Monitoring Volume I: The Definition of Quality and Approaches to its Assessment. Ann Arbor, MI: Health Administration Press. 1980.

Gysels M, Higginson IJ., eds. Improving supportive and palliative care for adults with cancer. Research Evidence Manual. London, National Institute of Clinical Excellence. 2003. URL: (http://www.nice.org.uk/podf/SupportivePalliative_Research_Evidence_SecondDons.pdf).

Cook A M, Finlay I G, Edwards A G. et al. Efficiency of searching the grey literature in palliative care. J Pain Symptom Manage. 2001;22(3):797–801. [PubMed: 11532593]

Higginson IJ, Finlay IG, Goodwin DM, Cook AM, Edwards AGK, Hood K, et al. The role of palliative care teams: a systematic review of their effectiveness and cost-effectiveness. Report to Wales Office of Research and Development of the National Assembly of Wales. London, Department of Palliative Care and Policy. 2000.

Alderson P, Green S, Higgins JPT. Cochrane Reviewers' Handbook 4.2.2 [Updated December 2003]. In: The Cochrane Library, Issue 1, 2004. Chichester, UK: John Wiley & Sons, Ltd. 2004.

Sutton AJ, Abrams KR, Jones DR, Sheldon TA, Song F. Methods for Meta-Analysis in Medical Research. Wiley Series in Probability and Statistics. Chichester, UK: John Wiley & Sons. 2000.

Moher D, Cook D J, Eastwood S. et al. Improving the quality of reports of meta-analyses of randomised controlled trials: the QUOROM statement. Quality of Reporting of Meta-analyses. Lancet. 1999;354(9193):1896–900. [PubMed: 10584742]

Stroup D F, Berlin J A, Morton S C. et al. Meta-analysis of observational studies in epidemiology: a proposal for reporting. Meta-analysis Of Observational Studies in Epidemiology (MOOSE) group. JAMA. 2000;283(15):2008–12. [PubMed: 10789670]

Colquitt J, Clegg A, Sidhu M, et al. Surgery for morbid obesity (Cochrane Review). Cochrane Database Syst Rev 2003;(2):CD003641. [PubMed: 12804481]

Jadad A R, Moore R A, Carroll D. et al. Assessing the quality of reports of randomized clinical trials: is blinding necessary? Control Clin Trials. 1996;17(1):1–12. [PubMed: 8721797]

Rothman KJ, Greenland S. Modern Epidemiology. Philadelphia, PA: Lippincott-Raven Publishers. 1998.

Wilkinson E K, Salisbury C, Bosanquet N. et al. Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review. Palliat Med. 1999;13(3):197–216. [PubMed: 10474707]

Grande G E, Todd C J, Barclay S I. et al. A randomized controlled trial of a hospital at home service for the terminally ill. Palliat Med. 2000;14(5):375–85. [PubMed: 11064784]

Ringdal G I, Jordhoy M S, Kaasa S. Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage. 2002;24(1):53–63. [PubMed: 12183095]

Hanks G W, Robbins M, Sharp D. et al. The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team. Br J Cancer. 2002;87(7):733–9. [PMC free article: PMC2364271] [PubMed: 12232756]

Rabow M W, Dibble S L, Pantilat S Z. et al. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med. 2004;164(1):83–91. [PubMed: 14718327]

Brumley R D, Enguidanos S, Cherin D A. Effectiveness of a home-based palliative care program for end-of-life. J Palliat Med. 2003;6(5):715–24. [PubMed: 14622451]

Weisbord S D, Carmody S S, Bruns F J. et al. Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephorl Dial Transplant 2003;18(7):1345–52. Comment in: Nephrol Dial Transplant. 2003;18(12):2688. PMID: 14605313. [PubMed: 12808172]

Riegel B, Carlson B, Kopp Z. et al. Effect of a standardized nurse case-management telephone intervention on resource use in patients with chronic heart failure. Comment in: Arch Intern Med. 2002;162(6):705–12. Comment in: Arch Intern Med. 2002 Oct 14;162(18):2142–3. author reply 2143. PMID: 12374530. [PubMed: 11911726]

Bruera E, Pituskin E, Calder K. et al. The addition of an audiocassette recording of a consultation to written recommendations for patients with advanced cancer: A randomized, controlled trial. Cancer. 1999;86(11):2420–5. [PubMed: 10590386]

Schneiderman L J, Gilmer T, Teetzel H D. et al. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA. 2003;290(9):1166–72. [PubMed: 12952998]

Molloy D W, Guyatt G H, Russo R. et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA. 2000;283(11):1437–44. [PubMed: 10732933]

Guyatt G H, Mitchell A, Molloy D W. et al. Measuring patient and relative satisfaction with level or aggressiveness of care and involvement in care decisions in the context of life threatening illness. J Clin Epidemiol. 1995;48(10):1215–24. [PubMed: 7561983]

Bookbinder M, Coyle N, Kiss M. et al. Implementing national standards for cancer pain management: program model and evaluation. J Pain Symptom Manage. 1996;12(6):334–47. discussion 331–3. [PubMed: 8973043]

Pietersma P, Follett-Bick S, Wilkinson B. et al. A bedside food cart as an alternate food service for acute and palliative oncological patients. Support Care Cancer. 2003;11(9):611–4. [PubMed: 12883966]

Baker R, Wu A W, Teno J M. et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc. 2000;48(5 Suppl):S61–9. [PubMed: 10809458]

Heyland D K, Rocker G M, O'Callaghan C J. et al. Dying in the ICU: perspectives of family members. Chest. 2003;124(1):392–7. Comment in: Chest. 2003 Jul;124(1):11–2. PMID: 12853494. [PubMed: 12853551]

Sulmasy D P, McIlvane J M. Patients' ratings of quality and satisfaction with care at the end of life. Arch Intern Med. 2002;162(18):2098–104. [PubMed: 12374518]

Steinhauser K E, Christakis N A, Clipp E C. et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82. [PubMed: 11074777]

Zhukovsky D S, Gorowski E, Hausdorff J. et al. Unmet analgesic needs in cancer patients. J Pain Symptom Manage. 1995;10(2):113–9. [PubMed: 7537317]

Malacrida R, Bettelini C M, Degrate A. et al. Reasons for dissatisfaction: a survey of relatives of intensive care patients who died. Crit Care Med. 1998;26(7):1187–93.Comment in: Crit Care Med. 1998 Jul;26(7):1150–1. PMID: 9671355. Comment in: Crit Care Med. 2000 Jan;28(1):289–90. PMID: 10667559. [PubMed: 9671367]

Larsson B W, Larsson G, Carlson S R. Advanced home care: patients' opinions on quality compared with those of family members. J Clin Nurs. 2004;13(2):226–33. [PubMed: 14723675]

Kane R L, Homyak P, Bershadsky B. et al. Consumer responses to the Wisconsin Partnership Program for Elderly Persons: a variation on the PACE Model. J Gerontol A Biol Sci Med Sci. 2002;57(4):M250–8. [PubMed: 11909892]

Higginson I J, Costantini M. Communication in end-of-life cancer care: a comparison of team assessments in three European countries. J Clin Oncol. 2002;20(17):3674–82. [PubMed: 12202669]

Tierney R M, Horton S M, Hannan T J. et al. Relationships between symptom relief, quality of life, and satisfaction with hospice care. Palliat Med. 1998;12(5):333–44. [PubMed: 9924596]

Miceli P J, Mylod D E. Satisfaction of families using end-of-life care: current successes and challenges in the hospice industry. Am J Hosp Palliat Care. 2003;20(5):360–70. [PubMed: 14529039]

Fakhoury W, McCarthy M, Addington-Hall J. Determinants of informal caregivers' satisfaction with services for dying cancer patients. Soc Sci Med. 1996;42(5):721–31. [PubMed: 8685740]

Fakhoury W K, McCarthy M, Addington-Hall J. The effects of the clinical characteristics of dying cancer patients on informal caregivers' satisfaction with palliative care. Palliat Med. 1997;11(2):107–15. [PubMed: 9156106]

Kristjanson L J, Leis A, Koop P M. et al. Family members' care expectations, care perceptions, and satisfaction with advanced cancer care: results of a multi-site pilot study. J Palliat Care. 1997;13(4):5–13. [PubMed: 9447806]

Tolle S W, Tilden V P, Rosenfeld A G. et al. Family reports of barriers to optimal care of the dying. Nurs Res. 2000;49(6):310–7. [PubMed: 11093695]

Dawson N J. Need satisfaction in terminal care settings. Soc Sci Med. 1991;32(1):83–7. [PubMed: 2008626]

Jacoby A, Lecouturier J, Bradshaw C. et al. Feasibility of using postal questionnaires to examine carer satisfaction with palliative care: a methodological assessment. South Tyneside MAAG Palliative Care Study Group. Palliat Med. 1999;13(4):285–98. [PubMed: 10659098]

Volicer L, Hurley A C, Blasi Z V. Scales for evaluation of End-of-Life Care in Dementia. Alzheimer Dis Assoc Disord. 2001;15(4):194–200. [PubMed: 11723370]

Tilden V P, Tolle S W, Drach L L. et al. Out-of-Hospital Death: Advance Care Planning, Decedent Symptoms, and Caregiver Burden. J Am Geriatr Soc. 2004;52(4):532–9. [PubMed: 15066067]

Fisher E S, Wennberg D E, Stukel T A. et al. The implications of regional variations in Medicare spending. Part 2: health outcomes and satisfaction with care. Comment in: Ann Intern Med. 2003 Feb 18;138(4):347–8. PMID: 12585834. Comment in: Ann Intern Med. 2003 Feb 18;138(4):348–9. PMID: 12585835. Comment in: Ann Intern Med. 2003 Feb 18;138(4):350–1. PMID: 12585836. Comment in: Ann Intern Med. 2004 Jan. [PubMed: 12585826]

Cohen S R, Leis A. What determines the quality of life of terminally ill cancer patients from their own perspective? J Palliat Care. 2002;18(1):48–58. [PubMed: 12001403]

Conley V M, Burman M E. Informational needs of caregivers of terminal patients in a rural state. Home Healthc Nurse. 1997;15(11):808–17. [PubMed: 9418433]

Farber S J, Egnew T R, Herman-Bertsch J L. et al. Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med. 2003;6(1):19–31. [PubMed: 12710572]

Hanson L C, Henderson M, Menon M. As individual as death itself: a focus group study of terminal care in nursing homes. J Palliat Med. 2002;5(1):117–25. [PubMed: 11839234]

Jacobs L G, Bonuck K, Burton W. et al. Hospital care at the end of life: an institutional assessment. J Pain Symptom Manage. 2002;24(3):291–8. [PubMed: 12458110]

Jarrett N J, Payne S A, Wiles R A. Terminally ill patients' and lay-carers' perceptions and experiences of community-based services. J Adv Nurs. 1999;29(2):476–83. [PubMed: 10197949]

Jones R V, Hansford J, Fiske J. Death from cancer at home: the carers' perspective. BMJ 1993;306(6872):249–51. Comment in: BMJ. 1993 Mar 6;306(6878):648–9. PMID: 8461826. Comment in: BMJ. 1993 Mar 6;306(6878):649. PMID: 8461827. [PMC free article: PMC1676719] [PubMed: 8443527]

Kirchhoff K T, Walker L, Hutton A. et al. The vortex: families' experiences with death in the intensive care unit. Am J Crit Care. 2002;11(3):200–9. [PubMed: 12022483]

McCain N L, Gramling L F. Living with dying: coping with HIV disease. Issues Ment Health Nurs. 1992;13(3):271–84. [PubMed: 1399523]

Murray S A, Boyd K, Kendall M. et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325(7370):929. Comment in: BMJ. 2002 Oct 26;325(7370):915–6. PMID: 12399323. [PMC free article: PMC130056] [PubMed: 12399341]

Proot I M, Abu-Saad H H, Crebolder H F. et al. Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci. 2003;17(2):113–21. [PubMed: 12753511]

Rabow M W, Schanche K, Petersen J. et al. Patient perceptions of an outpatient palliative care intervention: “It had been on my mind before, but I did not know how to start talking about death…” J Pain Symptom Manage. 2003;26(5):1010–5. [PubMed: 14585552]

Rasmussen B H, Jansson L, Norberg A. Striving for becoming at-home in the midst of dying. Am J Hosp Palliat Care. 2000;17(1):31–43. [PubMed: 11094918]

Raynes N V, Leach J M, Rawlings B. et al. Using focus groups to seek the views of patients dying from cancer about the care they receive. Health Expect. 2000;3(3):169–175. [PMC free article: PMC5080965] [PubMed: 11281926]

Richardson J. Health promotion in palliative care: the patients' perception of therapeutic interaction with the palliative nurse in the primary care setting. J Adv Nurs. 2002;40(4):432–40. [PubMed: 12421402]

Ross L A. Elderly patients' perceptions of their spiritual needs and care: a pilot study. J Adv Nurs. 1997;26(4):710–5. [PubMed: 9354982]

Sinding C. Disarmed complaints: unpacking satisfaction with end-of-life care. Soc Sci Med. 2003;57(8):1375–85. [PubMed: 12927468]

Steinhauser K E, Clipp E C, McNeilly M. et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–32. [PubMed: 10819707]

Stiles M K. The shining stranger: application of the phenomenological method in the investigation of the nurse--family spiritual relationship. Cancer Nurs. 1994;17(1):18–26. [PubMed: 7514093]

Sunvisson H, Ekman S L. Environmental influences on the experiences of people with Parkinson's disease. Nurs Inq. 2001;8(1):41–50. [PubMed: 11882200]

Thomas J, Retsas A. Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal cancer. Int J Nurs Stud. 1999;36(3):191–201. [PubMed: 10404288]

Vig E K, Davenport N A, Pearlman R A. Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. J Am Geriatr Soc. 2002;50(9):1541–8. [PubMed: 12383152]

Vig E K, Pearlman R A. Quality of life while dying: a qualitative study of terminally ill older men. J Am Geriatr Soc. 2003;51(11):1595–601. [PubMed: 14687389]

Wenrich M D, Curtis J R, Ambrozy D A. et al. Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers. J Pain Symptom Manage. 2003;25(3):236–46. [PubMed: 12614958]

Wright K. Relationships with death: the terminally ill talk about dying. J Marital Fam Ther. 2003;29(4):439–53. [PubMed: 14593687]

Yedidia M J, MacGregor B. Confronting the prospect of dying reports of terminally ill patients. J Pain Symptom Manage. 2001;22(4):807–19. [PubMed: 11576797]

Braun K L, Zir A. Roles for the church in improving end-of-life care: perceptions of Christian clergy and laity. Death Stud. 2001;25(8):685–704. [PubMed: 11883451]

Chochinov H M, Hack T, McClement S. et al. Dignity in the terminally ill: a developing empirical model. Soc Sci Med. 2002;54(3):433–43. [PubMed: 11824919]

Eliott J, Olver I. The discursive properties of “hope”: a qualitative analysis of cancer patients' speech. Qual Health Res. 2002;12(2):173–93. [PubMed: 11837369]

McNamara B, Waddell C, Colvin M. The institutionalization of the good death. Soc Sci Med. 1994;39(11):1501–8. [PubMed: 7529433]

Raftery J P, Addington-Hall J M, MacDonald L D. et al. A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients. Palliat Med. 1996;10(2):151–61. [PubMed: 8800823]

Hughes S L, Weaver F M, Giobbie-Hurder A. et al. Effectiveness of team-managed home-based primary care: a randomized multicenter trial. JAMA. 2000;284(22):2877–85. [PubMed: 11147984]

Cohen S R, Mount B M, Tomas J J. et al. Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire. Cancer. 1996;77(3):576–86. [PubMed: 8630968]

Byock I R, Merriman M P. Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index. Palliat Med. 1998;12(4):231–44. [PubMed: 9743822]

Kyriaki M, Eleni T, Efi P. et al. The EORTC core quality of life questionnaire (QLQ-C30, version 30) in terminally ill cancer patients under palliative care: validity and reliability in a Hellenic sample. Int J Cancer. 2001;94(1):135–9. [PubMed: 11668488]

Herndon J E 2nd, Fleishman S, Kosty M P. et al. A longitudinal study of quality of life in advanced non-small cell lung cancer: Cancer and Leukemia Group B (CALGB) 8931. Contorl Clin Trials 1997; 18(4):286–300. Comments in: Control Clin Trails. 1997 Aug;18(4):306–10. PMID: 9257069. Commnet in: Control Clin Trials. 1997 Aug;18(4):311–7. PMID: 9257070. [PubMed: 9257067]

Guo H, Fine P G, Mendoza T R. et al. A preliminary study of the utility of the brief hospice inventory. J Pain Symptom Manage. 2001;22(2):637–48. [PubMed: 11495710]

Llobera J, Esteva M, Benito E. et al. Quality of life for oncology patients during the terminal period. Validation of the HRCA-QL index. Support Care Cancer. 2003;11(5):294–303. [PubMed: 12690543]

Sterkenburg C A, King B, Woodward C A. A reliability and validity study of the McMaster Quality of Life Scale (MQLS) for a palliative population. J Palliat Care. 1996;12(1):18–25. [PubMed: 8857243]

Mystakidou K, Tsilika E, Kouloulias V. et al. The “Palliative Care Quality of Life Instrument (PQLI)” in terminal cancer patients. Health Qual Life Outcomes. 2004;2(1):8. [PMC free article: PMC368445] [PubMed: 14962348]

Giorgi F, Cellerino R, Gramazio A. et al. Assessing quality of life in patients with cancer: a comparison of a visual-analogue and a categorical model. Am J Clin Oncol. 1996;19(4):394–9. [PubMed: 8677913]

Green C P, Porter C B, Bresnahan D R. et al. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure. J Am Coll Cardiol. 2000;35(5):1245–55. [PubMed: 10758967]

Higginson I J, McCarthy M. Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219–28. [PubMed: 7505183]

Carson M G, Fitch M I, Vachon M L. Measuring patient outcomes in palliative care: a reliability and validity study of the Support Team Assessment Schedule. Palliat Med. 2000;14(1):25–36. [PubMed: 10717720]

Steinhauser K E, Bosworth H B, Clipp E C. et al. Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med. 2002;5(6):829–41. [PubMed: 12685529]

Salmon P, Manzi F, Valori R M. Measuring the meaning of life for patients with incurable cancer: the life evaluation questionnaire (LEQ). Eur J Cancer. 1996;32A(5):755–60. [PubMed: 9081350]

Kristjanson L J. Validity and reliability testing of the FAMCARE Scale: measuring family satisfaction with advanced cancer care. Social Science & Medicine. 1993;36(5):693–701. [PubMed: 8456339]

Patrick D L, Engelberg R A, Curtis J R. Evaluating the quality of dying and death. J Pain Symptom Manage. 2001;22(3):717–26. [PubMed: 11532585]

Curtis J R, Patrick D L, Engelberg R A. et al. A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002;24(1):17–31. [PubMed: 12183092]

Hodde N M, Engelberg R A, Treece P D. et al. Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Crit Care Med. 2004;32(8):1648–53. [PubMed: 15286539]

Mularski R, Randall C, Osborne M, Engelberg R, Ganzini L. Agreement Among Family Members in Their Assessment of the Quality of Dying and Death. Journal of pain and symptom management. 2004;(In Press). [PubMed: 15471648]

Sulmasy D P, McIlvane J M, Pasley P M. et al. A scale for measuring patient perceptions of the quality of end-of-life care and satisfaction with treatment: the reliability and validity of QUEST. J Pain Symptom Manage. 2002;23(6):458–70. [PubMed: 12067770]

Curtisa J R, Patrick D L, Caldwell E. et al. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999;13(9):1123–31. [PubMed: 10397544]

Fried T R, Bradley E H, Towle V R. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci. 2002;57(6):S348–54. [PubMed: 12426443]

Mystakidou K, Parpa E, Tsilika E. et al. The families evaluation on management, care and disclosure for terminal stage cancer patients. BMC Palliat Care. 2002;1(1):3. [PMC free article: PMC102762] [PubMed: 11945181]

Gates M F, Lackey N R, White M R. Needs of hospice and clinic patients with cancer. Cancer Pract 1995;3(4):226–32. Comment in: Cancer Pract. 1995 Jul-Augs;3(4):201. PMID: 7620483. [PubMed: 7620487]

Schwartz C E, Mazor K, Rogers J. et al. Validation of a new measure of concept of a good death. J Palliat Med. 2003;6(4):575–84. [PubMed: 14516499]

Emanuel L L, Alpert H R, Emanuel E E. Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool. J Palliat Med. 2001;4(4):465–74. [PubMed: 11798478]

Hearn J, Higginson I J. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999;8(4):219–27. [PMC free article: PMC2483665] [PubMed: 10847883]

Steel K, Ljunggren G, Topinkova E. et al. The RAI-PC: an assessment instrument for palliative care in all settings. Am J Hosp Palliat Care. 2003;20(3):211–9. [PubMed: 12785043]

Wilkie D J, Huang H Y, Reilly N. et al. Nociceptive and neuropathic pain in patients with lung cancer: a comparison of pain quality descriptors. J Pain Symptom Manage. 2001;22(5):899–910. [PMC free article: PMC3682837] [PubMed: 11728793]

Bruera E, Kuehn N, Miller M J. et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6–9. [PubMed: 1714502]

Lobchuk M M, Vorauer J D. Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med. 2003;57(12):2379–84. [PubMed: 14572844]

Tranmer J E, Heyland D, Dudgeon D. et al. Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the memorial symptom assessment scale. J Pain Symptom Manage. 2003;25(5):420–9. [PubMed: 12727039]

Chang V T, Thaler H T, Polyak T A. et al. Quality of life and survival: the role of multidimensional symptom assessment. Cancer. 1998;83(1):173–9. [PubMed: 9655308]

Chow E, Wong R, Connolly R. et al. Prospective assessment of symptom palliation for patients attending a rapid response radiotherapy program Feasibility of telephone follow-up. J Pain Symptom Manage. 2001;22(2):649–56. [PubMed: 11495711]

Chang V T, Hwang S S, Feuerman M. Validation of the Edmonton Symptom Assessment Scale. Cancer. 2000;88(9):2164–71. [PubMed: 10813730]

Ewing G, Todd C, Rogers M. et al. Validation of a symptom measure suitable for use among palliative care patients in the community: CAMPAS-R. J Pain Symptom Manage. 2004;27(4):287–299. [PubMed: 15050656]

Hoekstra J, Bindels P J, van Duijn N P. et al. The symptom monitor. A diary for monitoring physical symptoms for cancer patients in palliative care: feasibility, reliability and compliance. J Pain Symptom Manage. 2004;27(1):24–35. [PubMed: 14711466]

Hollen P J, Gralla R J, Kris M G. et al. Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies Psychometric assessment of the Lung Cancer Symptom Scale. Cancer. 1994;73(8):2087–98. [PubMed: 8156514]

Hollen P J, Gralla R J, Kris M G. et al. Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS). Eur J Cancer. 1993;29A(Suppl 1):S51–8. [PubMed: 8381294]

Hollen P J, Gralla R J, Kris M G. et al. Normative data and trends in quality of life from the Lung Cancer Symptom Scale (LCSS). Support Care Cancer. 1999;7(3):140–8. [PubMed: 10335932]

Sarna L, Brecht M L. Dimensions of symptom distress in women with advanced lung cancer: a factor analysis. Heart Lung. 1997;26(1):23–30. [PubMed: 9013218]

Warden V, Hurley A C, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4(1):9–15. Comment in: J Am Med Dir Assoc. 2003 Feb;4(1):50–1. PMID: 12807599. [PubMed: 12807591]

Chochinov H M, Wilson K G, Enns M. et al. “Are you depressed?” Screening for depression in the terminally ill. Am J Psychiatry 1997;154(5):674–6. Comment in: Am J Psychiatry. 1998;155(7):994–5. PMID: 9659876. [PubMed: 9137124]

Morita T, Tsunoda J, Inoue S. et al. Communication Capacity Scale and Agitation Distress Scale to measure the severity of delirium in terminally ill cancer patients: a validation study. Palliat Med. 2001;15(3):197–206. [PubMed: 11407191]

Kurlowicz L H, Evans L K, Strumpf N E. et al. A psychometric evaluation of the Cornell Scale for Depression in Dementia in a frail, nursing home population. Am J Geriatr Psychiatry. 2002;10(5):600–8. [PubMed: 12213695]

Hopwood P, Howell A, Maguire P. Screening for psychiatric morbidity in patients with advanced breast cancer: validation of two self-report questionnaires. British Journal of Cancer. 1991;64(2):353–6. [PMC free article: PMC1977509] [PubMed: 1892763]

Kaasa T, Wessel J. The Edmonton Functional Assessment Tool: further development and validation for use in palliative care. J Palliat Care. 2001;17(1):5–11. [PubMed: 11324186]

Kaasa T, Wessel J, Darrah J. et al. Inter-rater reliability of formally trained and self-trained raters using the Edmonton Functional Assessment Tool. Palliat Med. 2000;14(6):509–17. [PubMed: 11219881]

Gerety M B, Mulrow C D, Tuley M R. et al. Development and validation of a physical performance instrument for the functionally impaired elderly: the Physical Disability Index (PDI). J Gerontol. 1993;48(2):M33–8. [PubMed: 8473692]

Gloth F M 3rd, Walston J, Meyer J. et al. Reliability and validity of the Frail Elderly Functional Assessment questionnaire. Am J Phys Med Rehabil. 1995;74(1):45–53. [PubMed: 7873113]

Koedoot N, Molenaar S, Oosterveld P. et al. The decisional conflict scale: further validation in two samples of Dutch oncology patients. Patient Educ Couns. 2001;45(3):187–93. [PubMed: 11722854]

Sherman A C, Simonton S, Adams D C. et al. Measuring religious faith in cancer patients: reliability and construct validity of the Santa Clara Strength of Religious Faith questionnaire. Psycho-Oncology. 2001;10(5):436–43. [PubMed: 11536422]

Dobratz M C. The Life Closure Scale: a measure of psychological adaptation in death and dying. Hosp J. 1990;6(3):1–15. [PubMed: 2276714]

Burnett P, Middleton W, Raphael B. et al. Measuring core bereavement phenomena. Psychol Med. 1997;27(1):49–57. [PubMed: 9122308]

Hogan N S, Greenfield D B, Schmidt L A. Development and validation of the Hogan Grief Reaction Checklist. Death Stud. 2001;25(1):1–32. [PubMed: 11503760]

Robinson L A, Nuamah I F, Lev E. et al. A prospective longitudinal investigation of spousal bereavement examining Parkes and Weiss' Bereavement Risk Index. J Palliat Care. 1995;11(4):5–13. [PubMed: 8648524]

Feldstein M A, Gemma P B. Oncology nurses and chronic compounded grief. Cancer Nurs. 1995;18(3):228–36. [PubMed: 7600555]

Travis S S, Bernard M A, McAuley W J. et al. Development of the family caregiver medication administration hassles scale. Gerontologist. 2003;43(3):360–8. [PubMed: 12810899]

Kirschling J M, Tilden V P, Butterfield P G. Social support: the experience of hospice family caregivers. Hosp J. 1990;6(2):75–93. [PubMed: 2401471]

Kristjansson B, Breithaupt K, McDowell I. Development and validation of an indicator of support for community-residing older Canadians. Int Psychogeriatr. 2001;13(Supp 1):125–35. [PubMed: 11892959]

Henoch I, Gustafsson M. Pressure ulcers in palliative care: development of a hospice pressure ulcer risk assessment scale. Int J Palliat Nurs. 2003;9(11):474–84. [PubMed: 14676724]

Dooneief G, Marder K, Tang M X. et al. The Clinical Dementia Rating scale: community-based validation of "profound' and "terminal' stages. Neurology. 1996;46(6):1746–9. [PubMed: 8649584]

Fowell A, Finlay I, Johnstone R. et al. An integrated care pathway for the last two days of life: Wales-wide benchmarking in palliative care. Int J Palliat Nurs 2002;8(12):566–73. Comment in: Int J Palliat Nurs. 2003 Jan;9(1):39. PMID: 12560796. [PubMed: 12560798]

Wilson D. Managing End of life pain and other symptoms through non-pharmacological means. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Booth S, Anderson H, Swannick M. et al. The use of oxygen in the palliation of breathlessness. A report of the expert working group of the Scientific Committee of the Association of Palliative Medicine. Respir Med. 2004;98(1):66–77. [PubMed: 14959816]

Salman G F, Mosier M C, Beasley B W. et al. Rehabilitation for patients with chronic obstructive pulmonary disease: meta-analysis of randomized controlled trials. J Gen Intern Med. 2003;18(3):213–21. [PMC free article: PMC1494836] [PubMed: 12648254]

Higginson I J, Finlay I G, Goodwin D M. et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003;25(2):150–68. [PubMed: 12590031]

Jennings A L, Davies A N, Higgins J P. et al. A systematic review of the use of opioids in the management of dyspnoea. Thorax. 2002;57(11):939–44. [PMC free article: PMC1746225] [PubMed: 12403875]

Pan C X, Morrison R S, Ness J. et al. Complementary and alternative medicine in the management of pain, dyspnea, and nausea and vomiting near the end of life. A systematic review. J Pain Symptom Manage. 2000;20(5):374–87. [PubMed: 11068159]

Finnema E, Droes R M, Ribbe M. et al. The effects of emotion-oriented approaches in the care for persons suffering from dementia: a review of the literature. Int J Geriatr Psychiatry. 2000;15(2):141–61. [PubMed: 10679846]

Opie J, Rosewarne R, O'Connor D W. The efficacy of psychosocial approaches to behaviour disorders in dementia: a systematic literature review. Aust N Z J Psychiatry. 1999;33(6):789–99. [PubMed: 10619204]

Forbes D A. Strategies for managing behavioural symptomatology associated with dementia of the Alzheimer type: a systematic overview. Can J Nurs Res. 1998;30(2):67–86. [PubMed: 9807289]

Goudas L, Carr DB, Bloch R et al. Management of Cancer Pain. (Prepared by the New England Medical Center Evidence-Based Practice Center under Contact No. 290-97-0019). Rockville, MD: Agency for Healthcare Research and Quality. 2001.

Jack B, Hillier V, Williams A. et al. Hospital based palliative care teams improve the symptoms of cancer patients. Palliat Med. 2003;17(6):498–502. [PubMed: 14526882]

Detmar S B, Muller M J, Schornagel J H. et al. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002;288(23):3027–34. Comment in: JAMA. 2003 Apr 2;289(13):1636. author reply 1636–7. PMID: 12672729. Erratum in: JAMA. 2003 Feb 26;289(8):987. [PubMed: 12479768]

Sarna L. Effectiveness of structured nursing assessment of symptom distress in advanced lung cancer. Oncol Nurs Forum. 1998;25(6):1041–8. [PubMed: 9679262]

Soden K, Vincent K, Craske S. et al. A randomized controlled trial of aromatherapy massage in a hospice setting. Palliat Med. 2004;18(2):87–92. [PubMed: 15046404]

Smith T J, Staats P S, Deer T. et al. Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug-related toxicity, and survival. Journal of Clinical Oncology. 2002;20(19):4040–9. [PubMed: 12351602]

Mercadante S, Fulfaro F, Casuccio A. A randomised controlled study on the use of anti-inflammatory drugs in patients with cancer pain on morphine therapy: effects on dose-escalation and a pharmacoeconomic analysis. Eur J Cancer. 2002;38(10):1358–63. [PubMed: 12091067]

Simmons S F, Ferrell B A, Schnelle J F. Effects of a controlled exercise trial on pain in nursing home residents. Clin J Pain. 2002;18(6):380–5. [PubMed: 12441832]

Sittl R, Griessinger N, Likar R. Analgesic efficacy and tolerability of transdermal buprenorphine in patients with inadequately controlled chronic pain related to cancer and other disorders: a multicenter, randomized, double-blind, placebo-controlled trial. Clinical Therapeutics. 2003;25(1):150–68. [PubMed: 12637117]

Latimer E J, Crabb M R, Roberts J G. et al. The Patient Care Travelling Record in palliative care: effectiveness and efficiency. J Pain Symptom Manage. 1998;16(1):41–51. [PubMed: 9707656]

Weiner P, Waizman J, Magadle R. et al. The effect of specific inspiratory muscle training on the sensation of dyspnea and exercise tolerance in patients with congestive heart failure. Clin Cardiol. 1999;22(11):727–32. [PMC free article: PMC6656018] [PubMed: 10554688]

Booth S, Kelly M J, Cox N P. et al. Does oxygen help dyspnea in patients with cancer? Am J Respir Crit Care Med. 1996;153(5):1515–8. [PubMed: 8630595]

Mazzocato C, Buclin T, Rapin C H. The effects of morphine on dyspnea and ventilatory function in elderly patients with advanced cancer: a randomized double-blind controlled trial. Ann Oncol. 1999;10(12):1511–4. [PubMed: 10643545]

Jordhoy M S, Fayers P, Loge J H. et al. Quality of life in palliative cancer care: results from a cluster randomized trial. J Clin Oncol 2001;19(18):3884–94. Comment in: J Clin Oncol. 2002 Mar 15;20(6):1704–5. PMID: 11896122. [PubMed: 11559726]

Bruera E, MacEachern T, Ripamonti C. et al. Subcutaneous morphine for dyspnea in cancer patients. Ann Intern Med 1993;119(9):906–7. Comment in: Ann Intern Med. 1994 Apr 15;120(8):692–3. PMID: 8192764. [PubMed: 8215003]

Abernethy A P, Currow D C, Frith P. et al. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ. 2003;327(7414):523–8. [PMC free article: PMC192892] [PubMed: 12958109]

Bruera E, Sweeney C, Willey J. et al. A randomized controlled trial of supplemental oxygen versus air in cancer patients with dyspnea. Palliat Med. 2003;17(8):659–63. [PubMed: 14694916]

Bruera E, de Stoutz N, Velasco-Leiva A. et al. Effects of oxygen on dyspnea in hypoxaemic terminal-cancer patients. Lancet. 1993;342(8862):13–4. [PubMed: 8100289]

Schofield P, Payne S. A pilot study into the use of a multisensory environment (Snoezelen) within a palliative day-care setting. Int J Palliat Nurs 2003;9(3):124–30. Erratum in: Int J Palliat Nurs. 2003 Apr;9(4):178. [PubMed: 12682575]

Wilkinson S, Aldridge J, Salmon I. et al. An evaluation of aromatherapy massage in palliative care. Palliat Med. 1999;13(5):409–17. [PubMed: 10659113]

Stephenson N L, Weinrich S P, Tavakoli A S. The effects of foot reflexology on anxiety and pain in patients with breast and lung cancer. Oncol Nurs Forum 2000;27(1):67–72. Comment in: Oncol Nurs Forum. 2000;27(1):67–72. PMID: 11338752. [PubMed: 10660924]

Gottlieb S S, Fisher M L, Freudenberger R. et al. Effects of exercise training on peak performance and quality of life in congestive heart failure patients. J Card Fail. 1999;5(3):188–94. [PubMed: 10496191]

Addington-Hall J M, MacDonald L D, Anderson H R. et al. Randomised controlled trial of effects of coordinating care for terminally ill cancer patients. BMJ. 1992;305(6865):1317–22. [PMC free article: PMC1883850] [PubMed: 1483075]

Manfredi P L, Breuer B, Wallenstein S. et al. Opioid treatment for agitation in patients with advanced dementia. International Journal of Geriatric Psychiatry. 2003;18(8):700–5. [PubMed: 12891637]

Sultzer D L, Gray K F, Gunay I. et al. Does behavioral improvement with haloperidol or trazodone treatment depend on psychosis or mood symptoms in patients with dementia? J Am Geriatr Soc. 2001;49(10):1294–300. [PubMed: 11890487]

Rogers J C, Holm M B, Burgio L D. et al. Improving morning care routines of nursing home residents with dementia. J Am Geriatr Soc 1999;47(9):1049–57. Comment in:J Am Geriatr Soc. 1999 Sep;47(9):1151–2. PMID: 10484262. [PubMed: 10484245]

Rovner B W, Steele C D, Shmuely Y. et al. A randomized trial of dementia care in nursing homes. J Am Geriatr Soc 1996;44(1):7–13. Comment in: J Am Geriatr Soc. 1996 Jan;44(1):91–2. PMID: 8537599. Comment in: J Am Geriatr Soc. 1996 Oct;44(10):1277–8. PMID: 8856018. [PubMed: 8537594]

Goodwin D M, Higginson I J, Myers K. et al. Effectiveness of palliative day care in improving pain, symptom control, and quality of life. J Pain Symptom Manage 2003;25(3):202–12. Comment in: J Pain Symptom Manage. 2003 Oct;26(4):886–7. author reply 888–9. PMID: 14527753. [PubMed: 12614955]

Payne J L, Sheppard J M, Steinberg M. et al. Incidence, prevalence, and outcomes of depression in residents of a long-term care facility with dementia. Int J Geriatr Psychiatry. 2002;17(3):247–53. [PubMed: 11921153]

Goldberg R J, Goldberg J. Risperidone for dementia-related disturbed behavior in nursing home residents: a clinical experience. Int Psychogeriatr. 1997;9(1):65–8. [PubMed: 9195280]

van der Steen J T, Ooms M E, van der Wal G. et al. Pneumonia: the demented patient's best friend? Discomfort after starting or withholding antibiotic treatment. J Am Geriatr Soc. 2002;50(10):1681–8. [PubMed: 12366622]

Friedman M M, Griffin J A. Relationship of physical symptoms and physical functioning to depression in patients with heart failure. Heart Lung. 2001;30(2):98–104. [PubMed: 11248712]

Fulop G, Strain J J, Stettin G. Congestive heart failure and depression in older adults: clinical course and health services use 6 months after hospitalization. Psychosomatics. 2003;44(5):367–73. [PubMed: 12954910]

Rumsfeld J S, Havranek E, Masoudi F A. et al. Depressive symptoms are the strongest predictors of short-term declines in health status in patients with heart failure. J Am Coll Cardiol. 2003;42(10):1811–7. [PubMed: 14642693]

Jiang W, Alexander J, Christopher E. et al. Relationship of depression to increased risk of mortality and rehospitalization in patients with congestive heart failure. Arch Intern Med 2001;161(15):1849–56. Comment in: Arch Intern Med. 2002 Feb 11;162(3):362. PMID: 11822938. Comment in: Arch Intern Med. 2002 Feb 11;162(3):362–4. PMID: 11822939. [PubMed: 11493126]

Acton G J, Kang J. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Res Nurs Health. 2001;24(5):349–60. [PubMed: 11746065]

Acton G J, Winter M A. Interventions for family members caring for an elder with dementia. Annu Rev Nurs Res. 2002;20:149–79. [PubMed: 12092509]

Yin T, Zhou Q, Bashford C. Burden on family members: caring for frail elderly: a meta-analysis of interventions. Nurs Res. 2002;51(3):199–208. [PubMed: 12063419]

Wilson D. Outcomes and Evaluation of end of life care. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Wilson D. End of life case management. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Wilson D. The needs of the families of dying persons. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274(20):1591–8. [PubMed: 7474243]

Ringdal G I, Ringdal K, Jordhoy M S. et al. Health-related quality of life (HRQOL) in family members of cancer victims: results from a longitudinal intervention study in Norway and Sweden. Palliat Med. 2004;18(2):108–20. [PubMed: 15046407]

Gitlin L N, Belle S H, Burgio L D. et al. Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychol Aging. 2003;18(3):361–74. [PMC free article: PMC2583061] [PubMed: 14518800]

Burgio L, Stevens A, Guy D. et al. Impact of two psychosocial interventions on white and African American family caregivers of individuals with dementia. Gerontologist. 2003;43(4):568–79. [PMC free article: PMC2579272] [PubMed: 12937335]

Burns R, Nichols L O, Martindale-Adams J. et al. Primary care interventions for dementia caregivers: 2-year outcomes from the REACH study. Gerontologist. 2003;43(4):547–55. [PubMed: 12937333]

Eisdorfer C, Czaja S J, Loewenstein D A. et al. The effect of a family therapy and technology-based intervention on caregiver depression. Gerontologist. 2003;43(4):521–31. [PMC free article: PMC2413057] [PubMed: 12937331]

Gitlin L N, Winter L, Corcoran M. et al. Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH Initiative. Gerontologist. 2003;43(4):532–46. [PubMed: 12937332]

Mahoney D F, Tarlow B J, Jones R N. Effects of an automated telephone support system on caregiver burden and anxiety: findings from the REACH for TLC intervention study. Gerontologist. 2003;43(4):556–67. [PubMed: 12937334]

Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. [PubMed: 12040138]

Covinsky K E, Goldman L, Cook E F. et al. The impact of serious illness on patients' families. SUPPORT Investigators Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA. 1994;272(23):1839–44. [PubMed: 7990218]

Emanuel E J, Fairclough D L, Slutsman J. et al. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341(13):956–63. [PubMed: 10498492]

Brazil K, Bedard M, Willison K. et al. Caregiving and its impact on families of the terminally ill. Aging and Mental Health. 2003;7(5):376–82. [PubMed: 12959807]

Hodgson C, Higginson I, McDonnell M. et al. Family anxiety in advanced cancer: a multicentre prospective study in Ireland. Br J Cancer. 1997;76(9):1211–4. [PMC free article: PMC2228119] [PubMed: 9365171]

Collins C, Stommel M, Wang S. et al. Caregiving transitions: changes in depression among family caregivers of relatives with dementia. Nurs Res. 1994;43(4):220–5. [PubMed: 8047426]

Grant I, Adler K A, Patterson T L. et al. Health consequences of Alzheimer's caregiving transitions: effects of placement and bereavement. Psychosom Med. 2002;64(3):477–86. [PubMed: 12021421]

Hays J C, Kasl S V, Jacobs S C. The course of psychological distress following threatened and actual conjugal bereavement. Psychol Med. 1994;24(4):917–27. [PubMed: 7892360]

Schulz R, Mendelsohn A B, Haley W E. et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003;349(20):1936–42. Comment in: N Engl J Med. 2003 Nov 13;349(20):1891–2. PMID: 14614164. Comment in: N Engl J Med. 2004 Feb 12;350(7):733–4. PMID: 14960754. [PubMed: 14614169]

Volicer L, Hurley A C, Blasi Z V. Characteristics of dementia end-of-life care across care settings. Am J Hosp Palliat Care. 2003;20(3):191–200. [PubMed: 12785040]

Martikainen P, Valkonen T. Do education and income buffer the effects of death of spouse on mortality? Epidemiology. 1998;9(5):530–4. [PubMed: 9730032]

Markowitz J S, Gutterman E M, Sadik K. et al. Health-related quality of life for caregivers of patients With Alzheimer disease. Alzheimer Disease and Associated Disorders. 2003;17(4):209–214. [PubMed: 14657784]

McCarthy M, Hall J A, Ley M. Communication and choice in dying from heart disease. J R Soc Med. 1997;90(3):128–31. [PMC free article: PMC1296175] [PubMed: 9135608]

Evangelista L S, Dracup K, Doering L. et al. Emotional well-being of heart failure patients and their caregivers. J Card Fail. 2002;8(5):300–5. [PubMed: 12411980]

Haggerty J L, Reid R J, Freeman G K. et al. Continuity of care: a multidisciplinary review. British Medical Journal. 2003;327:1219–1221. [PMC free article: PMC274066] [PubMed: 14630762]

Goodwin D M, Higginson I J, Edwards A G. et al. An evaluation of systematic reviews of palliative care services. J Palliat Care. 2002;18(2):77–83. [PubMed: 12164104]

Smeenk F W, van Haastregt J C, de Witte L P. et al. Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review. BMJ. 1998;316(7149):1939–44. [PMC free article: PMC28590] [PubMed: 9641929]

Wilson D. Continuity of end of life care. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274(20):1591–8. Comment in: JAMA. 1995 Nov 22–29;274(20):1634–6. PMID: 7474253. Comment in: JAMA. 1996 Apr 24;275(16):1227–8; author reply 1230–1. PMID: 8601945. Comment in: JAMA. 1996 Apr 24;275(16):1227. author reply 1230–1. PMID: 8601944. Comment in: JAMA. 199. [PubMed: 7474243]

Marbella A M, Desbiens N A, Mueller-Rizner N. et al. Surrogates' agreement with patients' resuscitation preferences: effect of age, relationship, and SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Crit Care. 1998;13(3):140–5. [PubMed: 9758029]

Schneiderman L J, Gilmer T, Teetzel H D. Impact of ethics consultations in the intensive care setting: a randomized, controlled trial. Critical Care Medicine. 2000;28(12):3920–4. [PubMed: 11153636]

Ahrens T, Yancey V, Kollef M. Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use. Am J Crit Care. 2003;12(4):317–23. discussion 324. [PubMed: 12882061]

Grande G E, Todd C J, Barclay S I. et al. Does hospital at home for palliative care facilitate death at home? Randomised controlled trial. BMJ 1999;319(7223):1472–5. Comment in: BMJ. 1999 Dec 4;319(7223):1447–8. PMID: 10582909. [PMC free article: PMC28293] [PubMed: 10582932]

DeCourtney C A, Jones K, Merriman M P. et al. Establishing a culturally sensitive palliative care program in rural Alaska Native American communities. J Palliat Med. 2003;6(3):501–10. [PubMed: 14509499]

Selwyn P A, Rivard M, Kappell D. et al. Palliative care for AIDS at a large urban teaching hospital: program description and preliminary outcomes. J Palliat Med. 2003;6(3):461–74. [PubMed: 14509496]

Stockelberg D, Lehtola P, Noren I. Palliative treatment at home for patients with haematological disorders. Support Care Cancer. 1997;5(6):506–8. [PubMed: 9406366]

Melin A L, Bygren L O. Efficacy of the rehabilitation of elderly primary health care patients after short-stay hospital treatment. Med Care. 1992;30(11):1004–15. [PubMed: 1331632]

Mann W C, Ottenbacher K J, Fraas L. et al. Effectiveness of assistive technology and environmental interventions in maintaining independence and reducing home care costs for the frail elderly. A randomized controlled trial. Arch Fam Med 1999;8(3):210–7. Comment in: ACP J Club. 1999 Nov-Dec;131(3):71. [PubMed: 10333815]

McAlister F A, Lawson F M, Teo K K. et al. A systematic review of randomized trials of disease management programs in heart failure. Am J Med. 2001;110(5):378–84. [PubMed: 11286953]

Philbin E F. Comprehensive multidisciplinary programs for the management of patients with congestive heart failure. J Gen Intern Med. 1999;14(2):130–5. [PubMed: 10051785]

Phillips C O, Wright S M, Kern D E. et al. Comprehensive discharge planning with postdischarge support for older patients with congestive heart failure: a meta-analysis. JAMA. 2004;291(11):1358–67. [PubMed: 15026403]

McAlister F A, Stewart S, Ferrua S. et al. Multidisciplinary strategies for the management of heart failure patients at high risk for admission: a systematic review of randomized trials. J Am Coll Cardiol. 2004;44(4):810–9. [PubMed: 15312864]

Windham B G, Bennett R G, Gottlieb S. Care management interventions for older patients with congestive heart failure. Am J Manag Care. 2003;9(6):447–59. quiz 460–1. [PubMed: 12816174]

Care of the dying: a Catholic perspective. Part III: Clinical context--good palliative care eases the dying process. Catholic Health Association. Health Prog 1993;74(4):22–6, 31. [PubMed: 10145799]

Stewart S, Marley J E, Horowitz J D. Effects of a multidisciplinary, home-based intervention on unplanned readmissions and survival among patients with chronic congestive heart failure: a randomised controlled study. Lancet. 1999;354(9184):1077–83. [PubMed: 10509499]

Topp R, Tucker D, Weber C. Effect of a clinical case manager/clinical nurse specialist on patients hospitalized with congestive heart failure. Nurs Case Manag. 1998;3(4):140–5. quiz 146–7, 182. [PubMed: 9856058]

Roglieri J L, Futterman R, McDonough K L. et al. Disease management interventions to improve outcomes in congestive heart failure. Am J Manag Care. 1997;3(12):1831–9. [PubMed: 10178473]

Gorski L A, Johnson K. A disease management program for heart failure: collaboration between a home care agency and a care management organization. Lippincotts Case Manag. 2003;8(6):265–73. [PubMed: 14646784]

Jaarsma T, Halfens R, Huijer Abu-Saad H. et al. Effects of education and support on self-care and resource utilization in patients with heart failure. Eur Heart J 1999;20(9):673–82. Comment in: Eur Heart J. 1999 May;20(9):632–3. PMID: 10419340. [PubMed: 10208788]

Heidenreich P A, Ruggerio C M, Massie B M. Effect of a home monitoring system on hospitalization and resource use for patients with heart failure. Am Heart J 1999;138(4 Pt 1):633–40. Comment in: Am Heart J. 1999 Oct;138(4 Pt 1):599–601. PMID: 10502199. [PubMed: 10502207]

Lasater M. The effect of a nurse-managed CHF clinic on patient readmission and length of stay. Home Healthc Nurse. 1996;14(5):351–6. [PubMed: 8847218]

Jerant A F, Azari R, Nesbitt T S. Reducing the cost of frequent hospital admissions for congestive heart failure: a randomized trial of a home telecare intervention. Med Care. 2001;39(11):1234–45. [PubMed: 11606877]

Stewart S, Pearson S, Horowitz J D. Effects of a home-based intervention among patients with congestive heart failure discharged from acute hospital care. Arch Intern Med. 1998;158(10):1067–72. [PubMed: 9605777]

Goldberg L R, Piette J D, Walsh M N. et al. Randomized trial of a daily electronic home monitoring system in patients with advanced heart failure: the Weight Monitoring in Heart Failure (WHARF) trial. Am Heart J. 2003;146(4):705–12. [PubMed: 14564327]

Philbin E F, Rocco T A, Lindenmuth N W. et al. The results of a randomized trial of a quality improvement intervention in the care of patients with heart failure. The MISCHF Study Investigators. Am J Med 2000;109(6):443–9. Comment in: Am J Med. 2000 Oct 15;109(6):501–3. PMID: 11042244. [PubMed: 11042232]

Goodyer L I, Miskelly F, Milligan P. Does encouraging good compliance improve patients' clinical condition in heart failure? Br J Clin Pract 1995;49(4):173–6. Comment in: Br J Clin Pract. 1995 Jul-Aug;49(4):171. PMID: 7547152. [PubMed: 7547154]

Phillips R S, Hamel M B, Teno J M. et al. Race, resource use, and survival in seriously ill hospitalized adults. The SUPPORT Investigators. J Gen Intern Med. 1996;11(7):387–96. [PubMed: 8842929]

Zweig S C, Kruse R L, Binder E F. et al. Effect of do-not-resuscitate orders on hospitalization of nursing home residents evaluated for lower respiratory infections. J Am Geriatr Soc. 2004;52(1):51–8. [PubMed: 14687315]

Intrator O, Zinn J, Mor V. Nursing home characteristics and potentially preventable hospitalizations of long-stay residents. J Am Geriatr Soc. 2004;52(10):1730–6. [PubMed: 15450053]

Tchen N, Bedard P, Yi Q L. et al. Quality of life and understanding of disease status among cancer patients of different ethnic origin. British Journal of Cancer. 2003;89(4):641–7. [PMC free article: PMC2376912] [PubMed: 12915871]

Sulmasy D P, Sood J R. Factors associated with the time nurses spend at the bedsides of seriously ill patients with poor prognoses. Med Care. 2003;41(4):458–66. [PubMed: 12665710]

Hutt E, Ecord M, Eilertsen T B. et al. Precipitants of emergency room visits and acute hospitalization in short-stay Medicare nursing home residents. J Am Geriatr Soc. 2002;50(2):223–9. [PubMed: 12028202]

Fried T R, Mor V. Frailty and hospitalization of long-term stay nursing home residents. J Am Geriatr Soc 1997;45 (3):265–9. Comment in: J Am Geriatr Soc. 1997 Mar;45(3):378–9. PMID: 9063288. [PubMed: 9063269]

Kane R L, Keckhafer G, Flood S. et al. The effect of Evercare on hospital use. J Am Geriatr Soc. 2003;51(10):1427–34. [PubMed: 14511163]

Townsend J, Frank A O, Fermont D. et al. Terminal cancer care and patients' preference for place of death: a prospective study. BMJ 1990;301(6749):415–7. Comment in: BMJ. 1993 Jun 26;306(6894):1754. PMID: 8343651.

Tang S T, Mccorkle R. Determinants of congruence between the preferred and actual place of death for terminally ill cancer patients. J Palliat Care. 2003;19(4):230–7. [PubMed: 14959592]

Chin M H, Goldman L. Correlates of early hospital readmission or death in patients with congestive heart failure. Am J Cardiol. 1997;79(12):1640–4. [PubMed: 9202355]

Stewart S, Horowitz J D. Detecting early clinical deterioration in chronic heart failure patients post-acute hospitalisation-a critical component of multidisciplinary, home-based intervention? Eur J Heart Fail. 2002;4(3):345–51. [PubMed: 12034161]

Heller R F, Fisher J D, D'Este C A. et al. Death and readmission in the year after hospital admission with cardiovascular disease: the Hunter Area Heart and Stroke Register. Med J Aust. 2000;172(6):261–5. [PubMed: 10860090]

Burge F, Lawson B, Johnston G. Family physician continuity of care and emergency department use in end-of-life cancer care. Med Care. 2003;41(8):992–1001. [PubMed: 12886178]

Burge F, Lawson B, Johnston G. et al. Primary care continuity and location of death for those with cancer. J Palliat Med. 2003;6(6):911–8. [PubMed: 14733683]

Baggs J G. End-of-life care for older adults in ICUs. Annu Rev Nurs Res. 2002;20:181–229. [PubMed: 12092510]

Hanson L C, Tulsky J A, Danis M. Can clinical interventions change care at the end of life? Ann Intern Med 1997;126(5):381–8. Comment in: Ann Intern Med. 1997 Oct 1;127(7):574; author reply 574–5. PMID: 9313031. Comment in: Ann Intern Med. 1997 Oct 1;127(7):574. author reply 574–5. PMID:9313030. [PubMed: 9054283]

Higginson I J, Finlay I, Goodwin D M. et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002;23(2):96–106. [PubMed: 11844629]

Walsh R A, Girgis A, Sanson-Fisher R W. Breaking bad news. 2: What evidence is available to guide clinicians? Behav Med. 1998;24(2):61–72. [PubMed: 9695897]

Landry F J, Kroenke K, Lucas C. et al. Increasing the use of advance directives in medical outpatients. J Gen Intern Med. 1997;12(7):412–5. [PMC free article: PMC1497131] [PubMed: 9229279]

Dexter P R, Wolinsky F D, Gramelspacher G P. et al. Effectiveness of computer-generated reminders for increasing discussions about advance directives and completion of advance directive forms. A randomized, controlled trial. Ann Intern Med. 1998;128(2):102–10. [PubMed: 9441569]

Smucker W D, Ditto P H, Moore K A. et al. Elderly outpatients respond favorably to a physician-initiated advance directive discussion. J Am Board Fam Pract. 1993;6(5):473–82. [PubMed: 8213238]

Schwartz C E, Wheeler H B, Hammes B. et al. Early intervention in planning end-of-life care with ambulatory geriatric patients: results of a pilot trial. Arch Intern Med. 2002;162(14):1611–8. [PubMed: 12123405]

Lilly C M, Sonna L A, Haley K J. et al. Intensive communication: four-year follow-up from a clinical practice study. Crit Care Med. 2003;31(5 Suppl):S394–9. [PubMed: 12771590]

Dowdy M D, Robertson C, Bander J A. A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine. 1998;26(2):252–9. [PubMed: 9468161]

Campbell M L, Guzman J A. Impact of a proactive approach to improve end-of-life care in a medical ICU. Chest 2003;123(1):266–71. Comment in: Chest. 2003 Jan;123(1):16–8. PMID: 12527596. [PubMed: 12527629]

Holzapfel L, Demingeon G, Piralla B. et al. A four-step protocol for limitation of treatment in terminal care. An observational study in 475 intensive care unit patients. Intensive Care Med 2002;28(9):1309–15. Comment in: Intensive Care Med. 2002 Sep;28(9):1197–9. PMID: 12400561. [PubMed: 12209282]

Jack B, Hillier V, Williams A. et al. Hospital based palliative care teams improve the insight of cancer patients into their disease. Palliat Med. 2004;18(1):46–52. [PubMed: 14982207]

Butler J V, Pooviah P K, Cunningham D. et al. Improving decision-making and documentation relating to do not attempt resuscitation orders. Resuscitation. 2003;57(2):139–44. [PubMed: 12745181]

Monteleoni C, Clark E. Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: before and after study. BMJ. 2004;329(7464):491–4. [PMC free article: PMC515202] [PubMed: 15331474]

Heffner J E, Fahy B, Hilling L. et al. Outcomes of advance directive education of pulmonary rehabilitation patients. Am J Respir Crit Care Med. 1997;155(3):1055–9. [PubMed: 9116986]

Anderson J P, Kaplan R M, Schneiderman L J. Effects of offering advance directives on quality adjusted life expectancy and psychological well-being among ill adults. J Clin Epidemiol. 1994;47(7):761–72. [PubMed: 7722589]

Stuart B, D'Onofrio C N, Boatman S. et al. CHOICES: promoting early access to end-of-life care through home-based transition management. J Palliat Med. 2003;6(4):671–83. [PubMed: 14516514]

Ratner E, Norlander L, McSteen K. Death at home following a targeted advance-care planning process at home: the kitchen table discussion. J Am Geriatr Soc 2001;49(6):778–81. Comment in: J Am Geriatr Soc. 2001 Jun;49(6):833–4. PMID: 11454127. [PubMed: 11454117]

Soskis C W. End-of-life decisions in the home care setting. Soc Work Health Care. 1997;25(12):107–16. [PubMed: 9313307]

Teno J M, Licks S, Lynn J. et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society. 1997;45(4):508–12. [PubMed: 9100722]

Teno J M, Stevens M, Spernak S. et al. Role of written advance directives in decision making: insights from qualitative and quantitative data. Journal of General Internal Medicine. 1998;13(7):439–46. [PMC free article: PMC1496979] [PubMed: 9686709]

Golin C E, Wenger N S, Liu H. et al. A prospective study of patient-physician communication about resuscitation. J Am Geriatr Soc. 2000;48(5 Suppl):S52–60. [PubMed: 10809457]

Wenger N S, Phillips R S, Teno J M. et al. Physician understanding of patient resuscitation preferences: insights and clinical implications. J Am Geriatr Soc. 2000;48(5 Suppl):S44–51. [PubMed: 10809456]

Tierney W M, Dexter P R, Gramelspacher G P. et al. The effect of discussions about advance directives on patients' satisfaction with primary care. J Gen Intern Med 2001;16(1):32–40. Comment in: J Gen Intern Med. 2001 Jan;16(1):68–9. PMID: 11251753. [PMC free article: PMC1495157] [PubMed: 11251748]

Rose J H, O'Toole E E, Dawson N V. et al. Generalists and oncologists show similar care practices and outcomes for hospitalized late-stage cancer patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks for Treatment. Med Care. 2000;38(11):1103–18. [PubMed: 11078051]

Curtis J R, Patrick D L, Caldwell E S. et al. Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Arch Intern Med 2000;160(11):1690–6. Comment in: Arch Intern Med. 2000 Jun 12;160(11):1565–6. PMID: 10847247. [PubMed: 10847263]

Junod Perron N, Morabia A, de Torrente A. Quality of life of Do-Not-Resuscitate (DNR) patients: how good are physicians in assessing DNR patients' quality of life? Swiss Med Wkly. 2002;132(3940):562–5. [PubMed: 12571762]

Lockhart L K, Ditto P H, Danks J H. et al. The stability of older adults' judgments of fates better and worse than death. Death Stud. 2001;25(4):299–317. [PubMed: 11803982]

Detmar S B, Muller M J, Schornagel J H. et al. Role of health-related quality of life in palliative chemotherapy treatment decisions. J Clin Oncol. 2002;20(4):1056–62. [PubMed: 11844830]

Butow P N, Maclean M, Dunn S M. et al. The dynamics of change: cancer patients' preferences for information, involvement and support. Annals of Oncology. 1997;8(9):857–63. [PubMed: 9358935]

Weeks J C, Cook E F, O'Day S J. et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998;279(21):1709–14. Comment in: JAMA. 1998 Jun 3;279(21):1746–8. PMID: 9624031. Comment in: JAMA. 1998 Oct 28;280(16):1403–4. PMID: 9800998. Comment in: JAMA. 1998 Oct 28;280(16):1403; author reply 1404. PMID: 9800997. Erratum in: JAMA. 2000 Jan 12;283(2):203. [PubMed: 9624023]

Phillips R S, Hamel M B, Teno J M. et al. Patient race and decisions to withhold or withdraw life-sustaining treatments for seriously ill hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. American Journal of Medicine. 2000;108(1):14–9. [PubMed: 11059436]

Wenger N S, Lynn J, Oye R K. et al. Withholding versus withdrawing life-sustaining treatment: patient factors and documentation associated with dialysis decisions. Journal of the American Geriatrics Society. 2000;48(5 Suppl):S75–83. [PubMed: 10809460]

Hakim R B, Teno J M, Harrell F E Jr. et al. Factors associated with do-not-resuscitate orders: patients' preferences, prognoses, and physicians' judgments. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Ann Intern Med. 1996;125(4):284–93. [PubMed: 8678391]

Danis M, Southerland L I, Garrett J M. et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991;324(13):882–8. Comment in: N Engl J Med. 1991 Oct 24;325(17):1254–6. PMID: 1922218. [PubMed: 2000110]

McParland E, Likourezos A, Chichin E. et al. Stability of preferences regarding life-sustaining treatment: a two-year prospective study of nursing home residents. Mt Sinai J Med. 2003;70(2):85–92. [PubMed: 12634900]

Azoulay E, Chevret S, Leleu G. et al. Half the families of intensive care unit patients experience inadequate communication with physicians. Critical Care Medicine. 2000;28(8):3044–9. [PubMed: 10966293]

Hammes B J, Rooney B L. Death and end-of-life planning in one midwestern community. Arch Intern Med. 1998;158(4):383–90. [PubMed: 9487236]

Shuster JL. ABCD Commends VA for End-of-Life Improvements. ABCD Exchange.

Tilden V P, Tolle S W, Drach L L. et al. Out-of-hospital death: advance care planning, decedent symptoms, and caregiver burden. J Am Geriatr Soc. 2004;52(4):532–9. [PubMed: 15066067]

Wilson D. Culture and end of life care. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Wilson D. End of life care in acute care hospitals. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Wilson D. End of life care in residential continuing-care facilities. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Wilson D. The home as a place of end of life care. Integration of End of Life Care: A Health Canada Synthesis Research Project. Edmonton, Alberta Canada: University of Alberta. draft in press.

Farsides B, Dunlop R J. Is there such a thing as a life not worth living? BMJ. 2001;322(7300):1481–3. [PMC free article: PMC1120530] [PubMed: 11408312]

McGown A, Braithwaite V. Stereotypes of emotional caregivers and their capacity to absorb information: the views of nurses, stroke carers and the general public. J Adv Nurs. 1992;17(7):822–8. [PubMed: 1644978]