dying in hospital of severe dementia: palliative decision-making analysis

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(Aging 16: 420-421, 2004), © 2004, Editrice Kurtis 420 Aging Clin Exp Res, Vol. 16, No. 5 Palliative care is often the most appropriate approach for patients with terminal disease, as in the case of irre- versible dementia (1). Alzheimer’s disease (AD) or related dementia do not have a predictable time course, howev- er (2). Prognostic criteria are not effective in identifying which patients with advanced dementia will still be alive six months later (3). The present study was conducted to examine the in- tensity of palliative care provided to patients dying of ter- minal dementia at the Internal Medicine Services of two teaching hospitals. We thus conducted a retrospective review of the medical records on 300 patients aged >64 years, who died consecutively of dementia during a two-year peri- od (1999-2000). Patients were excluded if their data were insufficient (n=31) or if they had died suddenly (n=8) or of another disease (n=15), or during their first day in hospital (n=16). The diagnosis of terminal dementia was confirmed on the basis of a documented, chronic, progressive decline in cognitive function and written commentaries confirming severe dementia. All patients were completely dependent as concerns mo- bility, feeding and continence, and their cognitive test results were severely deteriorated. We carefully evalu- ated all written information on each patient as re- gards: do not resuscitate (DNR) orders, the gradua- tion of therapeutic decisions, and the prognostic in- formation given to relatives. Total withdrawal from drug therapy and provision of terminal care (part of the palliative care focused on symptom relief and support for both patient and family) were also assessed. Two hundred and thirty patients were ultimately con- sidered: 56% were women with a mean age of 81.9 years (range 65-101). The mean number of hospital ad- missions in the previous year was 1.6 (range 0-6); only 6% Dying in hospital of severe dementia: palliative decision-making analysis Francesc Formiga 1 , Claudia Olmedo 2 , Alfonso López Soto 2 , and Ramón Pujol 1 1 Geriatric Unit, Internal Medicine Service, Hospital Universitari de Bellvitge, L’Hospitalet de LL., Barcelona, 2 Geriatric Unit, Internal Medicine Service, Hospital Clinic, Barcelona, Spain of patients had not been hospitalized. As for the current admission, 38% of patients were hospitalized for respi- ratory or urinary tract infections. Patients died in a mean 9.4 (2-43) days after admission. According to the diag- nosis recorded in the medical files, 46% of patients had AD, 28% had vascular dementia, 17% had mixed or other forms of dementia, and 9% had no specific diag- nosis. DNR orders had been specified by only 32% of pa- tients, and decisions concerning intensity of care by 11%. The proportion of relatives aware of the terminal prognosis for the patient’s disease was 72%. Drugs were withdrawn in 68% of cases, and terminal care was start- ed in 66% (a mean 1.3 days before death). No differences emerged according to the cause of dementia. A previous observational study on 118 patients who died of end-stage heart failure (another disease whose course is difficult to predict) also recorded low rates of palliative care (4). In a subsequent study based on the same method, we compared a group of patients with de- mentia versus another with heart failure. We found a lower rate of graduated therapeutic decisions in the former group, while higher rates of informed relatives and withdrawal of medication were recorded in the de- mentia group (5). Dementia patients receiving antibiotic therapy for fever are known to have no survival advantage over those treated with palliative measures alone (6). This is an important issue because an infectious episode is frequently the main diagnosis recorded at these pa- tients’ last hospital stay. Nevertheless, the decision not to administer antibiotics but to start palliative measures in terminal dementia patients is a very difficult decision to make. A sizable group of terminal dementia patients who died at the hospital currently remains to be correctly iden- Aging Clinical and Experimental Research Key words: Dementia, elderly, palliative care. Correspondence: F. Formiga, MD, Geriatric Unit, Internal Medicine Service, Hospital Universitari de Bellvitge, Feixa Llarga s/n, L’Hospitalet de Llobregat 08907, Barcelona, Spain. E-mail: [email protected] Received May 19, 2003; accepted in revised form March 25, 2004. LETTER TO THE EDITOR

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(Aging 16: 420-421, 2004),©2004, Editrice Kurtis

420 Aging Clin Exp Res, Vol. 16, No. 5

Palliative care is often the most appropriate approachfor patients with terminal disease, as in the case of irre-versible dementia (1). Alzheimer’s disease (AD) or relateddementia do not have a predictable time course, howev-er (2). Prognostic criteria are not effective in identifyingwhich patients with advanced dementia will still be alive sixmonths later (3).

The present study was conducted to examine the in-tensity of palliative care provided to patients dying of ter-minal dementia at the Internal Medicine Services of twoteaching hospitals.

We thus conducted a retrospective review of themedical records on 300 patients aged >64 years, whodied consecutively of dementia during a two-year peri-od (1999-2000). Patients were excluded if their datawere insufficient (n=31) or if they had died suddenly(n=8) or of another disease (n=15), or during theirfirst day in hospital (n=16). The diagnosis of terminaldementia was confirmed on the basis of a documented,chronic, progressive decline in cognitive function andwritten commentaries confirming severe dementia. Allpatients were completely dependent as concerns mo-bility, feeding and continence, and their cognitive testresults were severely deteriorated. We carefully evalu-ated all written information on each patient as re-gards: do not resuscitate (DNR) orders, the gradua-tion of therapeutic decisions, and the prognostic in-formation given to relatives. Total withdrawal fromdrug therapy and provision of terminal care (part of thepalliative care focused on symptom relief and supportfor both patient and family) were also assessed.

Two hundred and thirty patients were ultimately con-sidered: 56% were women with a mean age of 81.9years (range 65-101). The mean number of hospital ad-missions in the previous year was 1.6 (range 0-6); only 6%

Dying in hospital of severe dementia: palliativedecision-making analysisFrancesc Formiga1, Claudia Olmedo2, Alfonso López Soto2, and Ramón Pujol11Geriatric Unit, Internal Medicine Service, Hospital Universitari de Bellvitge, L’Hospitalet de LL., Barcelona,2Geriatric Unit, Internal Medicine Service, Hospital Clinic, Barcelona, Spain

of patients had not been hospitalized. As for the currentadmission, 38% of patients were hospitalized for respi-ratory or urinary tract infections. Patients died in a mean9.4 (2-43) days after admission. According to the diag-nosis recorded in the medical files, 46% of patients hadAD, 28% had vascular dementia, 17% had mixed orother forms of dementia, and 9% had no specific diag-nosis. DNR orders had been specified by only 32% of pa-tients, and decisions concerning intensity of care by11%. The proportion of relatives aware of the terminalprognosis for the patient’s disease was 72%. Drugs werewithdrawn in 68% of cases, and terminal care was start-ed in 66% (a mean 1.3 days before death). No differencesemerged according to the cause of dementia.

A previous observational study on 118 patients whodied of end-stage heart failure (another disease whosecourse is difficult to predict) also recorded low rates ofpalliative care (4). In a subsequent study based on thesame method, we compared a group of patients with de-mentia versus another with heart failure. We found alower rate of graduated therapeutic decisions in theformer group, while higher rates of informed relativesand withdrawal of medication were recorded in the de-mentia group (5).

Dementia patients receiving antibiotic therapy forfever are known to have no survival advantage overthose treated with palliative measures alone (6). This isan important issue because an infectious episode isfrequently the main diagnosis recorded at these pa-tients’ last hospital stay. Nevertheless, the decision notto administer antibiotics but to start palliative measuresin terminal dementia patients is a very difficult decisionto make.

A sizable group of terminal dementia patients whodied at the hospital currently remains to be correctly iden-

Aging Clinical and Experimental Research

Key words: Dementia, elderly, palliative care.Correspondence: F. Formiga, MD, Geriatric Unit, Internal Medicine Service, Hospital Universitari de Bellvitge, Feixa Llarga s/n, L’Hospitalet de Llobregat 08907, Barcelona, Spain. E-mail: [email protected] May 19, 2003; accepted in revised form March 25, 2004.

LETTER TO THE EDITOR

(Aging 16: 420-421, 2004),©2004, Editrice Kurtis Palliative care in dementia

Aging Clin Exp Res, Vol. 16, No. 5 421

tified by their family doctors for the purposes of ananalysis of any decisions to provide palliative care. So, thewritten information recorded for such patients needsto be improved. In our opinion, planning future care mustinclude establishing end-of-life policies to improve thecomfort and well-being of patients in the final stages ofany medical disease (7).

REFERENCES1. Ahronheim J, Morrison RS, Baskin SA, et al. Treatment of the

dying in the acute care hospital: advanced dementia and metastat-ic cancer. Arch Intern Med 1996; 156: 2094-100.

2. Hurley A, Volicer L, Blasi ZV. End-of-life care for patients with ad-vanced dementia. JAMA 2000; 284: 2449-50.

3. Christakis NA, Escarce JJ. Survival of Medicare patients afterenrolment in hospice programs. N Engl J Med 1996; 335:172-8.

4. Formiga F, Espel E, Chivite D, Pujol R. Dying from heart failurein the hospital: palliative decision making analysis. Heart 2002;88: 187.

5. Formiga F, Vivanco V, Cuapio Y, Porta J, Gómez-Batiste X, Pu-jol R. Morir en el hospital por enfermedad terminal no oncológica:análisis de la toma de decisiones. Med Clin (Barc) 2003; 121:117-8.

6. Fabiszewski K, Volicer B, Volicer L. Effect of antibiotic treatmenton outcome of fevers in institutionalized Alzheimer patients. JA-MA 1990; 263: 3168-72.

7. Pujol R, Formiga F, Chivite D. Dying from heart failure in hospital.QJM 2003; 96: 777-8.