Jump to: Page Content, Site Navigation, Site Search,
You are seeing this message because your web browser does not support basic web standards. Find out more about why this message is appearing and what you can do to make your experience on this site better.
Anne-Mei The a Department of Social Medicine,
Institute for Research in Extramural Medicine, Vrije University Medical
Centre, 1081 BT, Amsterdam, Netherlands, b Department of Nursing Home Medicine,
Institute for Research in Extramural Medicine Correspondence to: A-M The
am.the.emgo{at}med.vu.nl
| |
Abstract |
|---|
|
|
|---|
Objective:
To clarify the practice of withholding the artificial administration of fluids and food from elderly patients with
dementia in nursing homes.
Design:
Qualitative, ethnographic study in two phases.
Setting:
10 wards in two nursing homes in the Netherlands.
Participants:
35 patients with dementia, eight
doctors, 43 nurses, and 32 families.
Results:
The clinical course of dementia was
considered normal and was rarely reason to begin the artificial
administration of fluids and food in advanced disease. Fluids and food
seemed to be given mainly when there was an acute illness or a
condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the
family, and the interpretations of the patients' quality of life by
their care providers were considered more important than living wills
and policy agreements.
Conclusions:
Doctors' decisions about withholding
the artificial administration of fluids and food from elderly patients
with dementia are influenced more by the clinical course of the
illness, the presumed quality of life of the patient, and the
patient's medical condition than they are by advanced planning of
care. In an attempt to understand the wishes of the patient doctors try
to create the broadest possible basis for the decision making process
and its outcome, mainly by involving the family.
|
What is already known on this topic
What this study adds
Doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family |
| |
Introduction |
|---|
|
|
|---|
In 1997 there was widespread discussion in the Netherlands about the practice of withholding the artificial administration of fluids and food from patients with advanced dementia. This arose from a complaint about the staff of a nursing home who had deliberately allowed a patient with dementia to dehydrate. The patient's family had been told that this was common practice in the advanced stages of the disease. The family had the patient admitted to hospital, where he improved after an infusion of fluid. A few days later he was reportedly sitting up in bed and eating.
Withholding the artificial administration of fluids and food, especially in incompetent patients in nursing homes, has also been the subject of discussion in the United Kingdom and the United States.1-4 Whether the artificial administration of fluids and food is beneficial to patients with advanced dementia has been debated.5-8
As a result of the debate in the Netherlands, the minister of public
health, welfare, and sports commissioned this study. We aimed to
determine the decision making process behind withholding the artificial
administration of fluids and food in incompetent patients.9 Within this category, patients with dementia
are an important group; 47% of people over 85 years have Alzheimer's disease.10 We focused on key factors in the decision
making process, trajectories for the illness, advanced planning of
care, and the presumed wishes of the patient.
| |
Methods |
|---|
|
|
|---|
Our qualitative ethnographic study was conducted in two phases. 11 12 Data were collected through observation of the participants of two nursing homes. Informed consent was obtained from the management teams of the two homes, the doctors, the nursing staff, and representatives (mostly relatives) of the patients.
The first phase of the study (October 1998 to April 1999) was carried out by RP who worked full time for 7 months in a nursing home (201 beds) in a rural part of the eastern Netherlands. RP conducted formal interviews, attended patients' funerals, and interviewed a few of the bereaved families. The second phase of the study (December 1999 to February 2001) was carried out by AT in a nursing home (210 beds) in the more urbanised western Netherlands.
RP had investigated the practice of withholding the artificial administration of fluids and food by the staff full time for 7 months, but we found that the time frame was too short to understand decision making when illnesses had longer trajectories, and the attitudes of the other professionals were not sufficiently clear. Therefore we increased the study period for phase 2 to 14 months on a part time basis, 3 days a week. AT focused on the doctors and other healthcare professionals, the perspectives of all involved, formalities in planning care in advance (policy agreements and living wills), and the course of the illness long term. Retrospective information on prospective cases was supplied from the medical notes and interviews. AT attended meetings, had informal conversations, and conducted interviews.
Because of the media attention surrounding the practice of withholding the artificial administration of fluids and food, the staff of both nursing homes were initially conscious of the researchers. The researchers observed but did not participate in the decision making process about withholding fluids and food. The findings and conclusions were submitted to the participants and discussed in formal interviews conducted at the end of both phases.13
Overall, 35 of the patients (28 women) on the 10 included wards were candidates for the withholding of the artificial administration of fluids and food, especially those with advanced disease. Their age ranged from 61 to 98 years. Four patients were in a ward for those needing supervision only, 12 in a ward for patients needing care for daily activities only, and 19 in a ward for patients needing nursing care. It was not possible for the researchers to follow patients on more than five wards, and the sample size was based on this observation. Eight doctors (five male, three female), 32 families, and 43 nurses were observed in the decision making process.
Analysis
Our analysis and results are based on four types of
data13: the researchers made comprehensive notes of their
observations and informal conversations; formal interviews were taped
and fully transcribed; the researchers had access to the medical and
nursing records of the patients for which their representatives had
given consent; and the researchers kept a diary of their own behaviour
and attitudes, distinct from their comprehensive notes.
Data were analysed per patient by both researchers, resulting in 35 case studies, which contained detailed descriptions of illness trajectories, the decision making process, the participants, and communication between the participants. Completed case studies were read repeatedly to identify patterns. The cases studies were then compared and similarities and differences between topics analysed.14 We resolved discrepancies through discussion. Saturation of data was reached after 21 cases; the identified patterns were checked with the last 14 cases.
| |
Results |
|---|
|
|
|---|
Advanced planning of care
The family was involved from the moment a patient was admitted to
the nursing home. This was achieved by holding regular meetings,
starting shortly after admission, in which the deterioration and
subsequent management of the patient were discussed (box
1).
Often these conversations resulted in policy agreements, which were recorded in the patient's notes. Few patients had a written living will; in specific situations they did not want their life prolonged or wanted euthanasia. These wishes were recorded.
Illness processes
Trajectory 1: the slow downward curve
When dehydration resulted from dementia there was hardly ever a
decision to give fluids and food artificially. Slow deterioration was
considered a natural course of the disease, in which patients would not
benefit from the artificial administration of fluids or food. Patients
were, however, given other types of non-medical support, including
special dietary provisions, and extra attention was paid to the way
food was given. This trajectory took place mainly in a care context
whereas the tasks depended largely on the nursing staff.
|
Trajectory 2: the interruption
Acute illness such as an infection or depression often interrupted
the slow deterioration from dementia (15 of 35 cases). This accelerated
deterioration was usually considered to be reversible and medically treatable.
|
each
period of treatment makes it more difficult to treat again. At a
certain point it's no longer beneficial." In such situations the
illness process was considered to be irreversible. If doctors
anticipated this, they prepared the family by warning that more
treatment wouldn't help, which was recorded in the patient's notes.
Unexpected fluctuation in the illness process: the dynamics
The decision to withhold the artificial administration of fluids
and food was mainly dictated by the medical condition of the patient
and the presence of acute illness. The course of the illness process,
however, seemed difficult to predict. Some patients became suddenly ill
and died, whereas those who were expected to die recovered
unexpectedly, even after simple treatment (box 4). For individual
patients various and even different decisions were made to withhold the
artificial administration of fluids and food.
|
Decision processes
Living will and policy agreements
The patients were unable to make a choice for themselves about
treatment, yet their wish was a factor in the decision making process.
A written living will influenced the decision to withhold the
artificial administration of fluids and food. Although euthanasia was
not possible, the living will was considered to represent the
patient's wish not to prolong his or her life, which was respected.
Written agreements were considered useful for dialogue with families,
subsequent conversations, and locums. Unexpected fluctuations in the
patient's condition, however, influenced previous policy agreements;
the doctors stated they mainly focused on the recent and current
wellbeing (including prognosis) and quality of life of their patients.
Current verbal and non-verbal wishes
Some patients with early dementia clearly expressed their death
wishes verbally, sometimes confirmed by the family (box 5). There also
seemed to be non-verbal expressions of wishes; patients who gave the
impression they were tired of life or even wanted to die
for example,
by refusing food or drink (box
6).
|
|
Control of staff and adaptation of family
The care context of the slow downward curve (trajectory 1)
depended on the nursing staff. Against that the staff rarely
participated in the decision making process for withholding the
artificial administration of fluids and food; they were informed and
their opinions sought, but the doctors made the decisions. Nurses
influenced the doctors by questioning decisions and expressing their concerns.
|
| |
Discussion |
|---|
|
|
|---|
Patients with dementia follow two illness trajectories, which entail decisions about whether to withhold the artificial administration of fluids and food. Doctors in nursing homes consider the deterioration from dementia (trajectory 1) to be the normal, irreversible course of the disease. Therefore in advanced dementia it is rarely considered beneficial to give fluids and food artificially. In our study this usually only happened if there was an acute illness or a condition that needed medical treatment (trajectory 2) and required rehydration to be effective.
Care providers strove to comply with the wishes of their patient (reconstruction of patient's wish).15 Patients' living wills seemed of limited importance; policy agreements were useful in the decision making process and for dialogue with the family. But in the end the medical condition of the patient, the wishes of the family (considerable attention was paid to helping the family adjust to the prevailing circumstances), and the interpretations of the patients' quality of life by their care providers were the most important criteria for withholding the artificial administration of fluids and food.
Doctors are constantly faced with uncertainties about what the patient wants (a question of interpretation), and therefore they struggle in deciding what is medically best. Unexpected fluctuations in the disease and presumed life wishes of patients force doctors to continue to ask themselves this question. To reduce this uncertainty they try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.
The two illness trajectories had different contexts and concerned different professionals: the second trajectory was characterised by medical decision making by the doctors and the first trajectory by care from the nursing staff. The care context seemed the most vulnerable: more staff were involved and the borderlines for what was involved in care were less clear. The care context is sensitive to continuity and communication problems; at present there is a scarcity of nurses in the Netherlands, which leads to unfilled posts and temporary workers.
Methodological considerations
We identified repeated patterns of decision making in the practice
of withholding the artificial administration of fluids and food from
elderly patients with dementia in nursing homes. We assume that our
findings are generalisable because the patterns were observed in two
nursing homes in different regions and by two researchers working
independently. Further ethnographic research is needed to confirm the
generalisability of our findings.11
The findings are important because the doctors' attitude towards policy agreements explained their preference for concentrating on the patient's quality of life. Although written living wills were helpful, they were insufficient. Because of the dynamic course of dementia, the current medical condition of the patient and his or her wishes must be taken into consideration when deciding whether to withhold the artificial administration of fluids and food.
| |
Acknowledgments |
|---|
Contributors: A-MT and RP were involved in the conception and the design of the study, collected data, contributed to the analysis and interpretation of the data, and wrote the paper. BP, GW, and MR were involved in the conception and design of the study and contributed to the analysis and interpretation of the data and the final version of the paper.
| |
Footnotes |
|---|
Funding: This study was funded by grants to the value of
297 000 (£186 932; $293 466) from the Ministry of Health,
Welfare, and Sports, the Netherlands.
Competing interests: None declared.
| |
References |
|---|
|
|
|---|
| 1. |
Sheldon T.
Row over force-feeding of patients with Alzheimer disease.
BMJ
1997;
315:
327-332 |
| 2. |
Kmietowicz Z.
Woman dies two months after food withdrawal.
BMJ
1997;
314:
1501 |
| 3. |
Dyer C.
Police investigate "euthanasia" deaths.
BMJ
1999;
318:
143 |
| 4. |
Dyer C.
Withdrawal of food supplement judged as misconduct.
BMJ
1999;
318:
895 |
| 5. |
Gillick MR.
Rethinking the role of tube feeding in patients with advanced dementia.
N Engl J Med
1999;
342:
206-210 |
| 6. | Sheiman SL. Tube feeding the demented nursing home resident. J Am Geriatr Soc 1996; 44: 1268-1270[Web of Science][Medline]. |
| 7. | Onwuteaka BD. Withholding artificial administration of fluids and food from elderly patients with dementia: a research proposal. Amsterdam: EMGO Institute, 1998. |
| 8. | Volicer L. Is hospice care appropriate for Alzheimer patients? CARING Magazine Nov 1993;50-5. |
| 9. |
Finunce TE, Christmas C, Travis K.
Tubefeeding in patients with advanced dementia: a review of evidence.
JAMA
1999;
282:
1365-1370 |
| 10. | Huang ZB, Ahronheim JC. Nutrition and hydration in terminally ill patients. An update. Clin Geriatr Med 2000; 16: 313-335[CrossRef][Web of Science][Medline]. |
| 11. |
Savage J.
Ethnography and health care.
BMJ
2000;
321:
1400-1402 |
| 12. |
Pope C, Mays N.
Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research.
BMJ
1995;
311:
42-45 |
| 13. |
Mays N, Pope C.
Assessing quality in qualitative research
BMJ
2000;
320:
50-52 |
| 14. | Strauss A, Corbin J. Basics of qualitative research. Newbury Park: Sage, 1990. |
| 15. | Ackerman TF. The moral implications of medical uncertainty: tube feeding demented patients. J Am Geriatr Soc 1996; 44: 1265-1267[Medline]. |
(Accepted 31 May 2002)
Read all Rapid Responses