Clinical Review

End-of-life issues in advanced dementia
Part 2: management of poor nutritional intake, dehydration, and pneumonia
Marcel Arcand MD MSc FCMF

Abstract
Objective To answer frequently asked questions about management of end-stage pneumonia, poor nutritional
intake, and dehydration in advanced dementia.
Sources of information Ovid MEDLINE was searched for relevant articles published until February 2015. No level I
studies were identified; most articles provided level III evidence. The symptom management suggestions are partiallybased on recent participation in a Delphi procedure to develop a guideline for optimal symptom relief for patientswith pneumonia and dementia.
Main message Feeding tubes are not recommended for patients with end-stage dementia. Comfort feeding byhand is preferable. Use of parenteral hydration might be helpful but can also contribute to discomfort at the end oflife. Withholding or withdrawing artificial nutrition and hydration is generally not associated with manifestations of
discomfort if mouth care is adequate. Because pneumonia usually causes considerable discomfort, clinicians should pay
attention to symptom control. Sedation for agitation is often useful in patients with dementia in the terminal phase.

Editor’s key points• For patients with end-stage dementia, comfort
feeding by hand is preferable to tube feeding,as it is aligned with comfort, allows social
interaction, and avoids complications of tube
feeding. A “comfort feeding only” order can
provide steps to ensure a patient’s comfort
through an individualized feeding care plan.
• Patients with advanced dementia mightfind the effort to eat and drink draining or
unwelcome and should not be pressured to makethis effort. Symptoms of dry mouth and thirstcan be alleviated with mouth care consisting oforal cleaning with swabs and lubrication.
• Antibiotics are sometimes prescribedto patients with dementia and end-stage
pneumonia to increase comfort even when
death is imminent. Withholding antibiotics
might be more appropriate if the goal of care is
symptom control without life prolongation.
This article is eligible for Mainpro-M1

Conclusion Symptomatic care is an appropriate option forend-stage manifestations of advanced dementia. The proposed
symptom management guidelines are based on a literature
review and expert consensus.

I

introduced Mrs M., an 85-year-old woman with advanced
dementia, in part 1 (page 330) of this 2-part review about
end-of-life issues in advanced dementia, in which I discussed
goals of care, the decision-making process, and how to educate families about therapeutic options.1 In this article, I will
focus on symptom management and care issues at the end of life.
Recurrent infections and poor nutritional intake are hallmarks ofadvanced dementia. The appropriate use of antibiotics and artificial nutrition and hydration (ANH) poses many clinical and ethicalchallenges for the treating physician.

Case description
You and Mrs M.’s daughter have discussed the therapeutic
options for Mrs M.’s probable end-stage pneumonia. She
agrees that symptomatic care is the most appropriate option at
this stage. However, she worries about the pain or discomfort
her mother might experience from dehydration and starvation,
as well as her pneumonia.

This article is eligible for Mainpro-M1 credits. To earncredits.
earn credits,andgoclickto www.cfp.ca
credits,
go To
to www.cfp.ca
on the Mainpro link. Sources of informationand click on the Mainpro link.

This article has been peer reviewed.
Can Fam Physician 2015;61:337-41
La traduction en français de cet article se trouveà www.cfp.ca dans la table des matières dunuméro d’avril 2015 à la page e183.

This article is based on a review of literature about end-of-lifecare in advanced dementia. MEDLINE was searched for articles
published until February 2015, containing the following MeSH
terms: dementia and palliative care or terminal care; and dementia
and pneumonia. A total of 41 articles were retrieved. The search
was supplemented with review of related topics in the UpToDate
database (www.uptodate.com).
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Clinical Review | End-of-life issues in advanced dementia: part 2
The guidelines for the management of symptoms arealso based on my recent participation in a Delphi procedure to develop a guideline for optimal symptom relief
for patients with pneumonia and dementia.2

Main message
Poor nutritional intake. Loss of appetite and difficulties
with eating and maintaining weight are almost universal
and expected complications of progressive dementia, evenwhen appropriately textured food and oral supplements
are offered.3,4 Eating problems associated with dementia
include difficulty chewing and swallowing, pocketing or
spitting, and loss of interest in food. Swallowing problems
often lead to aspiration events and pneumonia. Reversible
causes of poor intake such as excessive drug sedation,
altered mental status due to undetected dehydration, andpainful swallowing due to thrush should be looked for andcorrected whenever possible.
Feeding tubes. In certain groups, such as patientswith severe dysphagia after stroke or for those withamyotrophic lateral sclerosis, a feeding tube can prevent malnutrition and its complications and can prolong life. However, these benefits have not been found insystematic review of the literature among patients withadvanced dementia.5,6 This is mostly because there is
still a risk of aspiration with a feeding tube. In addition tomortality and morbidity related to the insertion procedure,
the tubes cause morbidity from leakage, discomfort, andoccasional blocking or displacement that requires an outpatient visit to correct. Furthermore, there might be a riskof needing chemical or physical restraints to prevent thepatient from pulling out the tube.7,8
Comfort feeding. Concern about the patient suffering from hunger and thirst is common among families
considering tube feeding. Findings of studies in which
terminally ill patients still capable of reporting their
symptoms were interviewed show that, although it does
not provide adequate nutrition, “comfort feeding” is able
to eliminate feelings of hunger or thirst. Comfort feeding,or hand feeding, involves giving patients frequent small
amounts of food, sips of liquids, or mouth care. This
alternative is more aligned with comfort, allows social
interaction, and avoids the complications of tube feeding. Cultural and moral standards often impede families
from being able to withhold artificial support. Providers
must explain to families that careful hand feeding should
fill patients’ needs without subjecting them to invasive
and nonbeneficial artificial feeding. There is still a riskof aspiration but it is minimized if the feeding is stopped
when the patient shows signs of distress.
A “comfort feeding only” order has been proposed.
Such an order states what steps are to be taken to ensure
the patient’s comfort through an individualized feeding

care plan.9 It offers a clear goal-oriented alternative
to tube feeding and eliminates the apparent care–nocare dichotomy imposed by current orders to forgo ANH.
Here is an example of a comfort feeding–only order:• Offer food and liquid as long as it is not distressing.
• Feed with the least invasive and potentially mostsatisfying method.
• Provide continuous interaction with the patient (eg,assiduous mouth care, conversation, therapeutic touch).
Artificial hydration. In advanced dementia, the symptoms of dehydration are often nonspecific. It is not rarethat dehydration is diagnosed only with marked degrees
of volume depletion typically associated with hypernatremia and uremia. Although use of intravenous or subcutaneous clysis might be temporarily useful, many experts
think that, in a terminal patient for whom hydration is ofquestionable value, it might be appropriate to withholdor withdraw this treatment in order to avoid discomfort(prolongation of dying, increased sputum retention).10
However, it must be acknowledged that there are different approaches worldwide that are dependent on the
beliefs or attitudes of medical providers and local culture.
Dehydrated patients who are still capable of swallowing
should be offered oral fluids and small quantities of foodas tolerated. If the effort to eat and drink is too draining or
unwelcome, the patient should not be pressured to makethis effort. Families who fear that the patient might sufferfrom thirst should be reassured: the correlation between
hydration and thirst status in terminally ill patients ismodest. To alleviate symptoms of dry mouth and thirst,
mouth care consisting of oral cleaning with swabs andlubrication is recommended every 2 hours.11
Survival and comfort after stopping ANH. A study ofpredictors of survival among 178 Dutch nursing homepatients with dementia who had ANH withdrawn orwithheld showed that 59% of patients died within 1
week. Patients who were considered more severely ill,had dyspnea, or experienced apathy were more likely
to die within the week. Longest length of survival happened in patients who were still able to take small
amounts of fluids.12 Another important finding is that thelevel of discomfort decreases in the days after the decision is made to forgo ANH. Most patients are probably
asleep or comatose shortly before death. Because of theobservational nature of the study and the lack of a reference group, conclusions should be drawn carefully.
Nevertheless, it seems that forgoing ANH in patientswith severe dementia who scarcely or no longer eat or
drink is not associated with high levels of discomfort.
Pneumonia. When the patient has very high depend­ency for activities of daily living, is bedridden, and has
dysphagia,13 pneumonia is often the cause of death in

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End-of-life issues in advanced dementia: part 2 | Clinical Review
the coming weeks or months even if antibiotics are prescribed.13,14 A prognostic score tool (Figure 1) might provide valuable information (both for physicians and family
members) for deciding between symptomatic and curative treatment.15 However, decisions should be based primarily on goals of care, taking into account the burdenof treatment and the patient’s wishes or best interests
according to family and professional caregivers.
Pneumonia is associated with high levels of
discomfort, with distressing symptoms occurring more
frequently than in patients who die after food and water
intake problems.16,17 Antibiotics can be used to increase
comfort even when death is imminent. However, thismight not be a good idea if the goal of care is symptom
control without life prolongation. On the one hand,antibiotics might extend the number of days lived withrelative discomfort.18 On the other hand, antibiotics do
not always improve comfort, and aggressive approaches

Figure 1. Prognostic score to estimate risk of deathwithin 14 d in patients with dementia and lower
respiratory infection or pneumonia when treatedwith antibiotics
Assigned
pointsPatient characteristic
at diagnosis
Sex• Female• Male02

Respiratory rate, per min• < 21• 21-30• 31-40• > 400
1
2
3

Respiratory difficulty• Absent• Present

0
3

Pulse rate, per min• < 76• 76-95• 96-115• > 11502
46Decreased alertness• Absent• Present

0
3

Fluid intake, average during last wk• Sufﬁcient (≥ 1.5 L/d)
• Insufﬁcient (< 1.5 L/d)

03

Eating dependency• Independent• Requires assistance• Fully dependent

0
4
8

Pressure sores• Absent• Present

03

Total assigned points prognostic score

0-31

Total assigned points

0-6

7-11

12-16

17-21

22-31

Approximate risk ofdeath within 14 d whentreated with antibiotics

2%

6%

16%

34%

> 50%

©2008 EMGO Institute for Health and Care Research, VU University Medical Center,
Amsterdam, the Netherlands. Reproduced from van der Steen et al,15 with permission
from the EMGO Institute for Health and Care Research. Available from:www.emgo.nl/quality-of-our-research/research-tools/prognotische-score.

(eg, intravenous antibiotics and hospitalization) might
decrease comfort. Symptomatic treatment might bemore appropriate and includes oxygen, opioids tocontrol pain and dyspnea, anticholinergic drugs suchas atropine to reduce respiratory secretions, andbenzodiazepines or antipsychotics to reduce fear andagitation (Table 1).2,11,19,20
Patients who choke on food but have a good capacity
to cough might survive aspiration “pneumonitis” causedby irritation of airways by gastric content. Aspiration
pneumonitis21 occurs usually after a meal. It presentswith acute dyspnea, tachypnea, tachycardia, and fever.
It should be managed by raising the head of the bed,
clearing the airways gently, providing oxygen therapy, andadministering bronchodilators (if there is bronchospasm)
and opioids to relieve respiratory distress. Those who cancough effectively often recover within 24 hours. However,many will develop bacterial pneumonia within a few days.
Dyspnea. Most often dyspnea is due to bronchopneumonia, and a decision to prescribe or to withhold
antibiotics has to be made. Opioids are the main symptomatic treatment of dyspnea. Benzodiazepines arehelpful if there is anxiety or agitation or severe distress.
Sometimes, the acute respiratory distress is due to acutepulmonary edema and should be managed with furosemide and a nitroglycerin patch if the systolic blood pressure is more than 90 mm Hg.
Changes in a dying patient’s breathing pattern might beindicative of considerable neurologic compromise. Periodsof apnea or Cheyne-Stokes pattern respirations mightdevelop. Accessory respiratory muscle use might also
become prominent. A few last reflex breaths might signal
death. Education of family members is often necessary to
reduce anxiety and allow them to be reassured about theclinical significance of those manifestations.11
Pain and agitation. Continuous pain in the semiconscious patient might be associated with grimacing andfacial tension. The possibility of pain must also be considered when physiologic signs occur, such as transitory
tachycardia that might signal distress. However, do notconfuse pain with the restlessness, agitation, moaning,and groaning that accompany terminal delirium. If thediagnosis is unclear, a trial of opioids is necessary to judge
whether pain is driving the observed behaviour. Some validated pain scales, such as the Pain Assessment Checklist
for Seniors with Limited Ability to Communicate22,23 andthe Pain Assessment in Advanced Dementia scale,24 used
on a regular basis in advanced dementia can be very useful to monitor pain or discomfort in the last weeks of life.
Antipsychotics are useful for delirium, but when a patientis terminal and unable to eat or drink anymore, sedation
with benzodiazepines might be a better choice. Midazolam
or lorazepam given on a regular basis might be indicated

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Clinical Review | End-of-life issues in advanced dementia: part 2
Table 1. Guidelines for management of symptoms in end-stage dementia
Symptom

Management

Dyspnea

Identify cause• Pneumonia is the most frequent cause; sometimes pulmonary edema• Antibiotics might improve comfort (reduce secretions) but prolong dying. Discuss goals of care. If goal of care is comfort but nolife prolongation, then “no antibiotics” is appropriate and necessitates good symptom management
Use opioids, as they are the most effective treatment• Start with either 0.5 mg of hydromorphone SC every 4 h as needed or 2-2.5 mg of morphine SC every 4 h in opioid-naive patients• If dyspnea is persistent, give doses every 4 h with breakthrough doses (10% of total daily opioid dose given every 1 h)
Use 20-40 mg of furosemide (SC or IV) if there is evidence of fluid overload
Use oxygen• Oxygen might improve oxygen saturation but it does not improve dyspnea, as it is related to respiratory muscle fatigue. Use
oxygen only if the patient is hypoxic and it appears helpful (can be stopped if patient is actively dying and comatose)If dyspnea remains severe, prescribe• 5-10 mg of midazolam SC plus morphine or hydromorphone 1.5 times the usual 4-h dose plus scopolamine 0.4-0.8 mg andrepeat morphine or hydromorphone and midazolam after 20 min as needed
Prescribe nonpharmacologic therapy• Providing a cool draft from an open window or fan and maintaining a calming presence are also helpful
Reposition the patient, as this is often the best strategy• Avoid suctioning except superficially without causing gagging. This can be done after lowering the head of the bed for a shorttime (if tolerated)
Start pharmacologic treatment• 0.2-0.8 mg of scopolamine* SC every 4-6 h as needed (maximum dose is 0.8 mg SC every 2 h)
• Scopolamine might be more effective if given on a regular basis• 0.2 to 0.4 mg of glycopyrrolate SC every 4 h might be preferred (less sedative)• 20-40 mg of furosemide SC might help if there is fluid overload
Prescribe opioid (oral or SC administration)• Hydromorphone might be preferable because of fewer active metabolites, diminishing risk of opioid toxicity• Start opioid slowly: 0.25-0.5 mg of hydromorphone every 4 h (can be given as needed; however, when the patient cannot
communicate, low-dose regular medication is often preferable); or 1-2.5 mg of morphine SC every 4 h (second choice)• After 24 h, calculate the daily dose needed and give regularly in divided doses with breakthrough doses (half of regular dose) every 1 h• Increase regular dosage if > 3 breakthrough doses daily
Consider treatable causes of pain (eg, full bladder, fecaloma, dry mouth)
Consider the following:• Often irreversible (might be due to opioid toxicity. Reduce morphine dose or change to hydromorphone, which has fewer active
metabolites)• Antipsychotics are normally the first choice in delirium (eg, 2.5-5 mg of methotrimeprazine every 6 h as needed), but if
agitation is mild to moderate in an actively dying patient, benzodiazepines given regularly (0.5-1 mg of lorazepam SC every 4 hregularly for palliative sedation) might be more useful than antipsychotics• If benzodiazepines are ineffective or cause paradoxical excitation, change to 12.5-50 mg of methotrimeprazine over a 24-h
period in divided doses every 4-6 h, or 0.5-2 mg of haloperidol SC every 30 min until agitation is controlled, then give regularly
every 4-6 hChange morphine to hydromorphone and add 0.5 mg of lorazepam every 4 h as needed or regularly

Terminal rales(“death rattles”)

Pain

Agitation

Myoclonus(frequent side
effect ofmorphine)

IM—intramuscular, IV—intravenous, SC—subcutaneous.
*Use of scopolamine or other antimuscarinics in this situation is controversial. Some authors believe that this symptom is not burdensome for thecomatose patient and that the treatment might not be in the patient’s interest if used only to comfort family.2
Data from van der Maaden et al,2 Ferris et al,11 Twycross et al,19 and Néron.20

for agitation due to fear or possible withdrawal reaction
from recently stopped drugs such as benzodiazepines,
antipsychotics, and selective serotonin reuptake inhibitors.20,25 More sedation might reduce the need for highdoses of opioids, which might bring unwanted side effects
such as respiratory depression, nausea, and myoclonus.
Furthermore, the advantages of less sedation are not as
relevant in a patient with severe dementia as in other palliative care patients who wish to remain in control of theirlives for as long as possible.26

Terminal rales. Muscarinic receptor blockers are commonly used to control respiratory secretions. These
drugs will minimize gurgling and crackling sounds
and can be used prophylactically in the unconscious
dying patient; however, there is controversy about theirusefulness.2 Some evidence suggests that the earlier
the treatment is initiated, the better it works, as larger
amounts of secretions in the upper aerodigestive tract
are more difficult to eliminate.27 However, premature use
in the patient who is still alert might lead to unacceptable

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End-of-life issues in advanced dementia: part 2 | Clinical Review
drying of oral and pharyngeal mucosa. Ensuring a good
body posture (lateral or upright position) might facilitatedrainage. In general, avoid suctioning because it mightcause gagging or increased mucus production. Families
might be disturbed by rattling sounds. Family members
should be reassured that these are not burdensome tothe comatose patient.
Vital signs, blood tests, and oxygen therapy. During
the terminal phase, inappropriate interventions, including blood tests and regular measurement of vital signs,
should be discontinued. If the patient appears feverish
and has a high temperature, acetaminophen suppositories are often prescribed. Oxygen is useful initially if
oxygen saturation is less than 90%, but it might prolong the dying process in patients who are about to die.
Oxygen might also be uncomfortable for the patient.
After discussion with the family, it can often be stopped
when the patient is comatose.28

Case resolution
Mrs M.’s daughter understands that comfort or handfeeding is preferable to tube feeding at this stage of thedisease. She contributes to mouth care when she ispresent. She also understands how opioids, sedatives,
etc, will be used to keep her mother as symptom free
as possible. Mrs M. initially appears quite uncomfortable and is treated with regular small doses of opioids,
scopolamine, and lorazepam. She is now sleeping andcomfortable. The family has time to gather and offer her
daughter some relief. Mrs M. dies peacefully 4 days later.

Conclusion
The appropriate use of ANH and antibiotics poses many
clinical and ethical challenges for the treating physician. Providing a comfort feeding–only order offersa clear goal-oriented alternative to tube feeding.
Withholding or withdrawing ANH is generally not associated with manifestations of discomfort if mouth careis adequate. Because pneumonia usually causes considerable discomfort, clinicians should pay attention tosymptom control. Palliative “symptomatic care only” isan appropriate option for end-stage manifestations ofadvanced dementia.
Dr Arcand is Full Professor in the Department of Family Medicine at the
University of Sherbrooke in Quebec, a care of the elderly physician at Institut
universitaire de gériatrie de Sherbrooke, and a researcher at the Centre derecherche sur le vieillissement in Sherbrooke.
Acknowledgment
Dr Arcand received a Visiting Scholar Fellowship from the University of British
Columbia arm of the Canadian Dementia Knowledge Translation Network(Canadian Institutes of Health Research DIP #87302) and support from the
National Core for Neuroethics at the University of British Columbia.
Competing interests
None declared
Correspondence
Dr Marcel Arcand; e-mail marcel.arcand@usherbrooke.ca

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