Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study
BMJ 2002; 325 doi: https://doi.org/10.1136/bmj.325.7376.1326 (Published 07 December 2002) Cite this as: BMJ 2002;325:1326
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The 1 and colleagues carefully describe how decisions are made when
patients with advanced dementia develop difficulty eating and drinking. A
few features of their report are troubling.
First, they refer several times to the decision about whether to
prolong a patient's life by providing tube feeding. There are no credible
data that tube feeding prolongs life in advanced dementia 2-5. An honest
summary of the data for families is, "We don't have any good evidence that
tube feeding will prolong life, and the chances are pretty good that your
loved one will die soon if we decide to put in a tube." It is inaccurate
and often hurtful to imply, "We could put in a tube or you can let your
loved one starve to death."
Second, The 1 and colleagues combine nutrition and fluids as though
they were a single intervention, one all-or-none decision. Acute, self-
limited illnesses that stop fluid intake can cause death from dehydration
in a matter of days. Providing fluids can prolong life substantially.
Unlike dehydration, starvation is rarely an acute threat to life and
occurs commonly in the context of chronic illness. Further, fluids may be
replaced orally, subcutaneously, intravenously, or enteraly while
parenteral and enteral nutrition may impose substantial burdens. We
believe that decisions about hydration present very different
considerations than decisions about nutrition.
Finally, the authors refer twice to prolonging life "unnecessarily",
and twice say that to prolong life wouldn't be "beneficial". If an
incapacitated patient is allowed to die when life-sustaining treatment is
available, something gravely serious, unique and extremely complex has
occurred. To say that it would be "unnecessary" to keep the patient alive,
or that it would not be "beneficial" to do so is to conceal the difficulty
of making such a decision, in part be appealing to a spurious objective
reality. The true purport is that the patient is simply considered better
off dead. Perhaps the authors used these terms as shorthand, in order to
manage the manuscript's length. Or perhaps doctors and family member are
the ones using this shorthand.
Patients nearing death or the people who speak for them must often
choose between one of two possible futures: one that offers longer
survival but with intensified suffering, or an alternative where comfort
and dignity are emphasized over longevity. Tube feeding in advanced
dementia neither prolongs survival nor enhances comfort and dignity.
1. The AM, Pasman R, Onwuteaka-Philipsen, Ribbe M, van der Wal G.
Withholding the artificial administration of fluids and food from elderly
patients with dementia: ethnographic study. BMJ 2002;325(7376):1326
2. Fisman DN, Levy AR, Gifford DR, Tamblyn R. Survival after
percutaneous endoscopic gastrostomy among older residents of Quebec. J Am
Geriatr Soc 1999;47(3):349-53.
3. Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS.
High short-term mortality in hospitalized patients with advanced dementia:
lack of benefit of tube feeding. Arch Intern Med 2001;161(4):594-9.
4. Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral
nutrition prolong the survival of institutionalized elders with chewing
and swallowing problems? J Gerontol A Biol Sci Med Sci 1998;53(3):M207-
13.
5. Sanders DS, Carter MJ, D'Silva J, James G, Bolton RP, Bardhan KD.
Survival analysis in percutaneous endoscopic gastrostomy feeding: a worse
outcome in patients with dementia. Am J Gastroenterol 2000;95(6):1472-5.
Competing interests:
None declared
Competing interests: No competing interests
The 1 and colleagues carefully describe how decisions are made when
patients with advanced dementia develop difficulty eating and drinking. A
few features of their report are troubling.
First, they refer several times to the decision about whether to
prolong a patient's life by providing tube feeding. There are no credible
data that tube feeding prolongs life in advanced dementia 2-5. An honest
summary of the data for families is, "We don't have any good evidence that
tube feeding will prolong life, and the chances are pretty good that your
loved one will die soon if we decide to put in a tube." It is inaccurate
and often hurtful to imply, "We could put in a tube or you can let your
loved one starve to death."
Second, The 1 and colleagues combine nutrition and fluids as though
they were a single intervention, one all-or-none decision. Acute, self-
limited illnesses that stop fluid intake can cause death from dehydration
in a matter of days. Providing fluids can prolong life substantially.
Unlike dehydration, starvation is rarely an acute threat to life and
occurs commonly in the context of chronic illness. Further, fluids may be
replaced orally, subcutaneously, intravenously, or enteraly while
parenteral and enteral nutrition may impose substantial burdens. We
believe that decisions about hydration present very different
considerations than decisions about nutrition.
Finally, the authors refer twice to prolonging life "unnecessarily",
and twice say that to prolong life wouldn't be "beneficial". If an
incapacitated patient is allowed to die when life-sustaining treatment is
available, something gravely serious, unique and extremely complex has
occurred. To say that it would be "unnecessary" to keep the patient alive,
or that it would not be "beneficial" to do so is to conceal the difficulty
of making such a decision, in part be appealing to a spurious objective
reality. The true purport is that the patient is simply considered better
off dead. Perhaps the authors used these terms as shorthand, in order to
manage the manuscript's length. Or perhaps doctors and family member are
the ones using this shorthand.
Patients nearing death or the people who speak for them must often
choose between one of two possible futures: one that offers longer
survival but with intensified suffering, or an alternative where comfort
and dignity are emphasized over longevity. Tube feeding in advanced
dementia neither prolongs survival nor enhances comfort and dignity.
Competing interests:
None declared
Competing interests: No competing interests
Cultural differences concerning artificial nutrition and hydration. A reply to Finucane and Chrismas
In view of the comments Finucane and Christmas make about our article
(1), we feel that some explanations are necessary.
First, there seems to be some misunderstanding about the status of
the data. Finucane and Christmas correctly mention that there is no
evidence that tube feeding will prolong the life of patients with advanced
dementia. In our article we do not mention possible prolongation of life
because we consider that to be a probable result, but because family and
nursing home staff often discuss the possibility of prolonging life when
they have to make a decision about whether or not to start artificial
nutrition and hydration (ANH) in demented nursing home patients. This is
illustrated in Boxes 1 and 2 in our article. In Box 1 the nursing home
physician (NHP) talks about ‘prolonging life’, and in Box 2 the daughter
of a patient mentions that her mother had always said that she “didn’t
want to be kept alive”.
The purpose of ethnographic studies is to describe the daily practice in
detail, or, as Pope and Mays (2)put it, to describe: “the systematic
detailed observation of behaviour and talk: watching and recording what
people say and do.” Our article is a description of the daily practice in
Dutch nursing homes when a decision has to be made about whether or not to
start ANH in patients with dementia.
Finucane and Christmas also correctly mention that decisions about
hydration are different from decisions about nutrition. Huang and
Ahronheim make this distinction in their recently updated review on
artificial nutrition and hydration (ANH)(3), but in daily practice, as we
observed in the nursing homes, as well as in many scientific papers,
nutrition and hydration are often mentioned together as ‘ANH’.
We would also point out that the words “unnecessarily” and “beneficial”
were used by family and nursing home staff in the discussion about whether
or not to start ANH, and have not been introduced by the researchers. In
Box 2, the NHP says: “I’ll make a report of this discussion and record in
the files that we have decided not to prolong the life of your mother
unnecessarily, as they say in the medical terminology.” The doctor
probably means that mother is considered to be better off dead, as
Finucane and Christmas state, but uses more concealed terms.
However, on the basis of these comments, it is obvious that there is a
discrepancy between theory and practice.
Secondly, and more importantly, in their first and second comments,
Finucane and Christmas indicate a possible important cultural difference
between the USA (and other countries) and the Netherlands. Finucane and
Christmas apparently assumed that the ANH decisions described in the
article concerned tube feeding (in view of the title of their response and
their remark that the authors ‘refer to the decision about whether to
prolong a patient’s life by providing tube feeding’). However, in our
study, although the family and nursing home staff talked about ‘artificial
administration of nutrition and hydration’ in general, the decision almost
always concerned the artificial administration of fluids specifically. In
14 out of the 15 times that a decision was made to start ANH in the
observed patients, it concerned hydration (i.e. to start a
hypodermoclysis). Also in the quantitative part or our study (a
prospective observational study in 39 nursing homes investigating decision
-making, clinical course and discomfort after the decision was made to
start or forgo ANH (unpublished data)) when a decision was made to start
ANH (for only 12 out of the 190 included patients), 10 of these decisions
concerned artificially hydration.
In Dutch nursing homes, when the food intake of a severely demented
patient declines, the nursing home staff try to prevent deterioration in
the nutritional status by adding supplements such as energy rich drinks to
the food (see Trajectory 1 and Box 2), but they hardly ever decide to
start tube feeding. They consider the deterioration to be the normal
irreversible course of the disease (see Trajectory 1), which they do not
wish to interfere with. Furthermore, adding supplements to the food
happens (long) before decisions about artificially hydration are made.(4)
It is possible that the point at which energy rich drinks are given in the
Netherlands, is the same point at which decisions about tube feeding are
made in the USA (and other countries). These are, indeed, very different
decisions, and empirical data concerning ANH obtained from different
countries should therefore be prudently compared.
References
1.The AM, Pasman R, Onwuteaka-Philipsen B, Ribbe M, Wal G van der.
Withholding the artificial administration of fluids and food from elderly
patients with dementia: an ethnographic study. BMJ 2002;325(7376):1326
2.Mays N, Pope C. Observational methods in health care settings. BMJ
1995;311:182-4
3.Huang Z, Ahronheim JC. Nutrition and hydration in terminally ill
patients. An update. Clinics in Geriatric Medicine 2000;16:313-325
4.Pasman HRW, The BAM, Onwuteaka-Philipsen BD, Wal G. van der, Ribbe MW.
Feeding nursing home patients with severe dementia: a qualitative study.
Journal of Advanced Nursing (in press)
Competing interests:
None declared
Competing interests: No competing interests