Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia

doi:10.1016/j.pec.2005.04.016

Patient Education and Counseling

Volume 61, Issue 3, June 2006, Pages 372-380

https://doi.org/10.1016/j.pec.2005.04.016 Get rights and content

Abstract

Objective

For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties.

Methods

Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia.

Results

In general, physicians, nurses and relatives agree on many aspects of end-of-life decision-making for nursing home patients with dementia. However, on some issues the outcomes of the decision-making may differ. Relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death.

Conclusion

Although physicians, nurses and relatives are all guided by the best interest of the patient, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions.

Practice implications

Physicians should discuss end-of-life decisions more openly. Physicians should be aware of the influences on attitudes and incorporate them into communication about end-of-life decisions.

Introduction

Dementia mainly affects very old people, and as the number of very old people is increasing worldwide, the number of people suffering from dementia is also increasing worldwide [1]. In the Netherlands, 1 in every 93 people suffered from dementia in 2000, and this is estimated to increase to 1 in 44 in 2050. In 2000, 35% of the people suffering from dementia in the Netherlands were residing in a nursing home or in a home for the aged [2].

Dementia is a progressive disease that is ultimately fatal. For 53% of all patients in Dutch nursing homes an explicit decision to forgo treatment is made prior to their death [3]. This percentage is probably even higher for patients with dementia [4]. Such decisions can concern forgoing treatment in the case of intercurrent diseases or, late in the course of the dementia, forgoing artificial nutrition and hydration (ANH) if the patient no longer takes in enough food and fluids to sustain life. ANH can be administered through a nasogastric tube or a percutaneous endoscopic gastrostomy tube (PEG tube). It is also possible to provide only fluids through a hypodermoclyse or an intravenous infusion.

Decisions to forgo treatment can be difficult to make, since most patients with dementia are no longer able to make these decisions for themselves. Close relatives and physicians, sometimes in dialogue with other relatives and nurses, will therefore have to make these decisions for the patient. Most nursing home physicians strive to reach agreement with family and nurses which decision is in the best interest of the patient, but the nursing home physician has the greatest influence on the decision-making [5]. It is very important for the peace of mind of all involved that there is agreement on which decision is in the best interest of the patient [6].

It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties.

In this study, 15 statements about ANH, advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia for whom a decision concerning ANH was made. We compared the results of the three groups and investigated factors that could influence attitude towards these statements.

Section snippets

Design and data collection

The current study is part of an observational study, based on written questionnaires completed by physicians, nurses and relatives of nursing home patients suffering from dementia for whom a decision concerning ANH was made. In the Netherlands, nursing home medicine is a separate medical specialty, and nursing home physicians are employed by the nursing home. Since 1990, they can follow a two-year specialist training programme [7]. Three regions in the Netherlands were selected as being

Background characteristics

The first part of Table 1 presents the background characteristics of the physicians, nurses and relatives. The nurses are the youngest group of respondents, with an average age of 34 years. The physicians were somewhat older (average 41 years) and the relatives were the oldest (average 57 years). The first part of Table 1 presents patient-related data. Less than 10% of the patients had an advance directive, according to the relatives, and ANH was started in less than 10% of the patients. Most

Limitations

A limitation of this study is that we cannot exclude the possibility that differences between physicians, on the one hand, and relatives and nurses on the other hand, were a result of the fact that the data were collected in different phases of the decision-making process. However, we found no indications of an important influence of the status of the patient on the attitudes of the nurses. We therefore consider it plausible that the physicians would not have reported different attitudes at any

Acknowledgement

Funding: This study was funded by the Ministry of Health, Welfare and Sports.

References (14)

H.R.W. Pasman et al.
Participants in the decision making on artificial nutrition and hydration to demented nursing home patients: a qualitative study
J Aging Stud
(2004)
M. Klinkenberg et al.
Preferences in end-of-life care of older persons: after-death interviews with proxy respondents
Soc Sci Med
(2004)
A. Wimo et al.
The magnitude of dementia occurrence in the world
Alzheimer Dis Assoc Disord
(2003)
Health Council of the Netherlands. Dementia. The Hague: Health Council of The Netherlands; 2002 [publication no....
A. van der Heide et al.
Frequency of decisions to forgo (artificial) administration of food and fluids at life's end
Ned Tijdschr Geneesk
(1997)
B.D. Onwuteaka-Philipsen et al.
Withholding or withdrawing artificial administration of food and fluids in nursing-home patients
Age Ageing
(2001)
K.T. Kirchhoff et al.
The vortex: families’ experiences with death in the intensive care unit
Am J Crit Care
(2002)

There are more references available in the full text version of this article.

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Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia

Abstract

Objective

Methods

Results

Conclusion

Practice implications

Introduction

Section snippets

Design and data collection

Background characteristics

Limitations

Acknowledgement

J Aging Stud

Soc Sci Med

The magnitude of dementia occurrence in the world

Alzheimer Dis Assoc Disord

Frequency of decisions to forgo (artificial) administration of food and fluids at life's end

Ned Tijdschr Geneesk

Withholding or withdrawing artificial administration of food and fluids in nursing-home patients

Age Ageing

The vortex: families’ experiences with death in the intensive care unit

Am J Crit Care