Discomfort in Nursing Home Patients With Severe Dementia in Whom Artificial Nutrition and Hydration Is Forgone | Dementia and Cognitive Impairment | JAMA Internal Medicine | JAMA Network
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Michaelsson  ENorberg  ANorberg  B Feeding methods for demented patients in end stage of life.  Geriatr Nurs 1987;869- 73PubMedGoogle ScholarCrossref
Volicer  LSeltzer  BRheaume  Y  et al.  Eating difficulties in patients with probable dementia of the Alzheimer type.  J Geriatr Psychiatry Neurol 1989;2188- 195PubMedGoogle ScholarCrossref
Watson  R Feeding patients who are demented.  Nurs Stand 1990;428- 30PubMedGoogle Scholar
Van Ort  SPhillips  L Feeding nursing home residents with Alzheimer's disease.  Geriatr Nurs 1992;13249- 253PubMedGoogle ScholarCrossref
McGillivray  TMarland  GR Assisting demented patients with feeding: problems in a ward environment: a review of the literature.  J Adv Nurs 1999;29608- 614PubMedGoogle ScholarCrossref
Watson  R Eating difficulty in older people with dementia.  Nurs Older People 2002;1421- 25PubMedGoogle ScholarCrossref
Pasman  HRWThe  BAMOnwuteaka-Philipsen  BDvan der Wal  GRibbe  MW Feeding nursing home patients with severe dementia: a qualitative study.  J Adv Nurs 2003;42304- 311PubMedGoogle ScholarCrossref
Sheiman  SL Tube feeding the demented nursing home residents.  J Am Geriatr Soc 1996;441268- 1270PubMedGoogle Scholar
Huang  ZAhronheim  JC Nutrition and hydration in terminally ill patients: an update.  Clin Geriatr Med 2000;16313- 325PubMedGoogle ScholarCrossref
Finucane  TEChristmas  CTravis  K Tube feeding in patients with advanced dementia: a review of the evidence.  JAMA 1999;2821365- 1370PubMedGoogle ScholarCrossref
Gillick  MR Rethinking the role of tube feeding in patients with advanced dementia.  N Engl J Med 2000;342206- 210PubMedGoogle ScholarCrossref
Li  I Feeding tubes in patients with severe dementia.  Am Fam Physician 2002;651605- 1610PubMedGoogle Scholar
Mitchell  SLKiely  DKLipsitz  LA The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment.  Arch Intern Med 1997;157327- 332PubMedGoogle ScholarCrossref
Sanders  DSCarter  MJD’Silva  JJames  GBolton  RPBardhan  KD Survival analysis in percutaneous endoscopic gastrostomy feeding: a worse outcome in patients with dementia.  Am J Gastroenterol 2000;951472- 1475PubMedGoogle ScholarCrossref
Mitchell  SLTetroe  JM Survival after percutaneous endoscopic gastrostomy placement in older persons.  J Gerontol A Biol Sci Med Sci 2000;55M735- M739PubMedGoogle ScholarCrossref
Meier  DEAhronheim  JCMorris  JBaskins-Lyons  SMorrison  RS High short-term mortality in hospitalised patients with advanced dementia: lack of benefit of tube feeding.  Arch Intern Med 2001;161594- 599PubMedGoogle ScholarCrossref
Gabre  PSjöquist  K Experience and assessment of pain in individuals with cognitive impairment.  Spec Care Dentist 2002;22174- 180PubMedGoogle ScholarCrossref
Manfredi  PLBreuer  BMeider  DELibow  L Pain assessment in elderly patients with severe dementia.  J Pain Symptom Manage 2003;2548- 52PubMedGoogle ScholarCrossref
Prkachin  KM Facial expressions as pain indicators.  Nurs Times 1993;8958PubMedGoogle Scholar
Hurley  ACVolicer  BJHanrahan  PAHoude  SVolicer  L Assessment of discomfort in advanced Alzheimer patients.  Res Nurs Health 1992;15369- 377PubMedGoogle ScholarCrossref
Kovach  CRWeissman  DEGriffie  JMatson  SMuchka  S Assessment and treatment of discomfort for people with late-stage dementia.  J Pain Symptom Manage 1999;18412- 419PubMedGoogle ScholarCrossref
Kovach  CRNoonan  PEGriffie  JMuchka  SWeissman  DE The assessment of discomfort in dementia patients.  Pain Manag Nurs 2002;316- 27PubMedGoogle ScholarCrossref
Warden  VHurley  ACVolicer  L Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale.  J Am Med Dir Assoc 2003;49- 15PubMedGoogle ScholarCrossref
Pasman  HRWOnwuteaka-Philipsen  BDThe  BAM  et al.  Starting or Forgoing Artificial Nutrition and Hydration in Psychogeriatric Nursing Home Patients: Decision-Making, Clinical Course and Quality of Dying [in Dutch].  Amsterdam, the Netherlands VU Medical Center2003;
Pasman  HRWThe  BAMOnwuteaka-Philipsen  BDRibbe  MWvan der Wal  G Participants in the decision-making on artificial nutrition and hydration to demented nursing home patients: a qualitative study.  J Aging Stud 2004;18321- 335Google ScholarCrossref
van der Steen  JTOoms  MEvan der Wal  GRibbe  MW Pneumonia: the patient’s best friend? discomfort after starting or withholding antibiotic treatment.  J Am Geriatr Soc 2002;501681- 1688PubMedGoogle ScholarCrossref
Hurley  ACVolicer  BMahony  MAVolicer  L Palliative fever management in Alzheimer patients: quality plus fiscal responsibility.  ANS Adv Nurs Sci 1993;1621- 32PubMedGoogle ScholarCrossref
Hoogendoorn  LIvan der Kamp  SSheer Mahomed  CAAder  HJOoms  MEvan der Steen  JT The role of the observer in the reliability of the Discomfort Scale–Dementia of Alzheimer Type (DS-DAT) [in Dutch].  Tijdschr Gerontol Geriatr 2001;32117- 121PubMedGoogle Scholar
Mahoney  EKHurley  ACVolicer  L  et al.  Development and testing of the resistiveness to care scale.  Res Nurs Health 1999;2227- 38PubMedGoogle ScholarCrossref
van der Steen  JTOoms  MEvan der Wal  GRibbe  MW Measuring discomfort patients with dementia: validity of the Dutch version of the Discomfort Scale–Dementia of Alzheimer Type (DS-DAT) [in Dutch].  Tijdschr Gerontol Geriatr 2002;33257- 263PubMedGoogle Scholar
Volicer  LHurley  ACLathi  DCKowall  NW Measurement of severity in advanced Alzheimer’s disease.  J Gerontol 1994;49M223- M226PubMedGoogle ScholarCrossref
Twisk  JW Different statistical models to analyze epidemiological observational longitudinal data: an example from the Amsterdam Growth and Health Study.  Int J Sports Med 1997;18 ((suppl 3)) S216- S224PubMedGoogle ScholarCrossref
Twisk  JWR Applied Longitudinal Data Analysis for Epidemiology: A Practical Guide.  Cambridge, England Cambridge University Press2003;
Volicer  LCollard  AHurley  ACBishop  CKern  DKaron  S Impact of special care unit for patients with advanced Alzheimer’s disease on patients’ discomfort and costs.  J Am Geriatr Soc 1994;42597- 603PubMedGoogle Scholar
Sullivan  RJ Accepting death without artificial nutrition and hydration.  J Gen Intern Med 1993;8220- 224PubMedGoogle ScholarCrossref
McCann  RMHall  WJGroth-Juncker  A Comfort care for terminally ill patients: the appropriate use of nutrition and hydration.  JAMA 1994;2721263- 1266PubMedGoogle ScholarCrossref
Lawton  MP Quality of life in Alzheimer disease.  Alzheimer Dis Assoc Disord 1994;8 ((suppl 3)) 138- 150PubMedGoogle ScholarCrossref
Ganzini  LGoy  ERMiller  LLHarvath  TAJackson  ADelorit  MA Nurses’ experiences with hospice patients who refuse food and fluids to hasten death.  N Engl J Med 2003;349359- 365PubMedGoogle ScholarCrossref
Viola  RAWells  GAPeterson  J The effects of fluid status and fluid therapy on the dying: a systematic review.  J Palliat Care 1997;1341- 52PubMedGoogle Scholar
Mitchell  SLKiely  DKHamel  MB Dying with advanced dementia in the nursing home.  Arch Intern Med 2004;164321- 326PubMedGoogle ScholarCrossref
Original Investigation
August 8/22, 2005

Discomfort in Nursing Home Patients With Severe Dementia in Whom Artificial Nutrition and Hydration Is Forgone

Author Affiliations

Author Affiliations: Departments of Public and Occupational Health (Drs Pasman, Onwuteaka-Philipsen, and van der Wal) and Nursing Home Medicine (Drs Pasman, Ooms, and Ribbe), VU University Medical Center, and Nursing Home Slotervaart (Dr Kriegsman), Amsterdam, the Netherlands.

Arch Intern Med. 2005;165(15):1729-1735. doi:10.1001/archinte.165.15.1729

Background  While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated.

Methods  In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale–Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations.

Results  Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians’ observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep.

Conclusions  Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort.