Objectives: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients. Methods: Prospective study of patients with a maximum life expectancy of six weeks in 16 nursing homes representative for the Netherlands (n =463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients. Results: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively. Conclusion: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.
Morita T , Tei Y , Inoue S . Impaired communication capacity and agitated delirium in the final week of terminally ill cancer patients: prevalence and identification of research focus . J Pain Symptom Manage2003; 827–834 .
2.
World Health Organization , 2004. Palliative care. The solid facts. Copenhagen, Denmark, World Health Organization , 2004.
3.
Hall P , Schroder C , Weaver L . The last 48 hours of life in long-term care: a focused chart audit . J Am Geriatr Soc2002; 501–506 .
4.
American Board of Internal Medicine , Identification and Promotion of Physician Competency . Caring for the Dying, 1996.
5.
Klinkenberg M , Willems DL , van der Wal G , Deeg DJ . Symptom burden in the last week of life . J Pain Symptom Manage2004; 5–13 .
6.
Aangenendt-Siegers IP , Cools HJ . [Cause of death in nursing homes] . Ned Tijdschr Geneeskd1992; 2015–2017 .
7.
Boersma F , Van den Brink W , Deeg DJ , Eefsting JA , Van Tilburg W . Survival in a population-based cohort of dementia patients: predictors and causes of mortality . Int J Geriatr Psychiatry1999; 748–753 .
8.
Muder RR . Pneumonia in residents of long-term care facilities: epidemiology, etiology, management, and prevention . Am J Med1998; 319–330 .
9.
Rietjens JA , van der Heide A , Vrakking AM , Onwuteaka-Philipsen BD , van der Maas PJ , van der Wal G . Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands . Ann Intern Med2004; 178–185 .
10.
Driscoll CE . Symptom control in terminal illness . Prim Care1987; 353–363 .
11.
Frederich ME . Nonpain symptom management . Prim Care2001; 299–316 .
12.
Prismant/Arcares . Verpleeghuizen in Cijfers 2000 [Statistical data on Dutch nursing homes 2000]. Prismant/ Arcares , 2002.
13.
van der Steen JT , Ooms ME , Ader HJ , Ribbe MW , van der Wal G . Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study . Arch Intern Med2002; 1753–1760 .
14.
Ribbe MW . Care for the elderly: the role of the nursing home in the Dutch health care system . Int Psychogeriatr1993; 213–222 .
15.
Hoek JF , Ribbe MW , Hertogh CM , van der Vleuten CP . The role of the specialist physician in nursing homes: the Netherlands' experience . Int J Geriatr Psychiatry2003; 244–249 .
Reisberg B , Ferris SH , de Leon MJ , Crook T . The Global Deterioration Scale for assessment of primary degenerative dementia . Am J Psychiatry1982; 1136–1139 .
18.
Stichting Informatiecentrum voor de Gezondheidszorg (SIG). Classificatie van ziekten voor de verpleeghuisgeneeskunde [Classification codes of diseases for nursing home medicine]. SIG, 1994.
19.
World Health Organization . International classification of diseases, tenth revision (ICD-10). World Health Organization , 1992.
20.
Steel K , Ljunggren G , Topinkova E , et al. The RAI-PC: an assessment instrument for palliative care in all settings . Am J Hosp Palliat Care2003; 211–219 .
21.
Chang VT , Hwang SS , Feuerman M . Validation of the Edmonton Symptom Assessment Scale . Cancer2000; 2164–2171 .
22.
Brandt HE , Deliens L , Ooms ME , van der Steen JT , van der Wal G , Ribbe MW . Symptoms, signs, problems, and diseases of terminally ill nursing home patients: a nationwide observational study in the Netherlands . Arch Intern Med2005; 314–320 .
23.
Baer WM , Hanson LC . Families' perception of the added value of hospice in the nursing home . JAm Geriatr Soc2000; 879–882 .
24.
McPherson CJ , Addington-Hall JM . Judging the quality of care at the end of life: can proxies provide reliable information?Soc Sci Med2003; 95–109 .
25.
Neumann PJ , Araki SS , Gutterman EM . The use of proxy respondents in studies of older adults: lessons, challenges, and opportunities . J Am Geriatr Soc2000; 1646–1654 .
26.
Novella JL , Jochum C , Jolly D , et al. Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease . Qual Life Res2001; 443–452 .
27.
Sneeuw KC , Aaronson NK , Sprangers MA , Detmar SB , Wever LD , Schornagel JH . Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses . Br J Cancer1999; 87–94 .
28.
Sneeuw KC , Sprangers MA , Aaronson NK . The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease . J Clin Epidemiol2002; 1130–1143 .
29.
Nekolaichuk CL , Bruera E , Spachynski K , MacEachern T , Hanson J , Maguire TO . A comparison of patient and proxy symptom assessments in advanced cancer patients . Palliat Med1999; 311–323 .
30.
Bruera E , Kuehn N , Miller MJ , Selmser P , Macmillan K . The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients . J Palliat Care1991; 6–9 .
31.
Hanson LC , Henderson M , Menon M . As individual as death itself: a focus group study of terminal care in nursing homes . J Palliat Med2002; 117–125 .
32.
World Health Organization . Better palliative care for older people. WHO , 2004.
33.
Binsack T . [Dyspnea in the terminal stage] . Schmerz, 2001: 370–73 .
34.
Ross DD , Alexander CS . Management of common symptoms in terminally ill patients: Part I. Fatigue, anorexia, cachexia, nausea and vomiting . Am Fam Physician2001; 807–814 .
