Alzheimer’s/Dementia and Neuromuscular Disorders

American Journal of Hospice

& Palliative Medicine®
Speech-Language Pathologists’ Views 1-6
ª The Author(s) 2019
Article reuse guidelines:
About Aspiration Risk and Comfort sagepub.com/journals-permissions
DOI: 10.1177/1049909119849003
Feeding in Advanced Dementia journals.sagepub.com/home/ajh

Cathy Berkman, PhD, MSW1 , Judith C. Ahronheim, MD, MSJ2,

and Caroline A. Vitale, MD3

Abstract
Background: Speech-language pathologists (SLPs) are often called upon to assess swallowing function for older adults with
advanced dementia at high risk of aspiration and make recommendations about whether the patient can safely continue oral
nutrition. Objective: To describe the circumstances under which SLPs recommend oral nutritional intake for these patients.
Methods: A mail survey of a national probability sample of SLPs (n ¼ 731). Speech-language pathologists were asked if there were
circumstances in which they would recommend oral feeding for patients with advanced dementia at high risk of aspiration, and if
yes, to describe the circumstances under which they do so. Results: Six themes emerged: (1) when patient preferences are
known; (2) for quality of life near end of life; (3) if aspiration risk mitigation strategies are employed; (4) if physician’s preference;
(5) if aspiration risk is clearly documented and acknowledged; and (6) if SLP is knowledgeable about current evidence of lack of
benefit of feeding tubes in advanced dementia or that nothing by mouth status will not necessarily prevent aspiration pneumonia.
Conclusions: Speech-language pathologists have an important role within the interprofessional team in assessing swallowing in
patients with advanced dementia, advising family and hospital staff about risks and benefits of oral feeding, and the safest
techniques for doing so, to maximize quality of life for these patients near the end of life. Speech-language pathologists are
often faced with balancing concerns about aspiration risk and recommending the more palliative approach of oral feeding for
pleasure and comfort, potentially creating moral distress for the SLP.

Keywords
end of life, advanced dementia, feeding tube, dysphagia, speech language pathologist, enteral nutrition, ethics, artificial nutrition
and hydration

Background with advanced dementia,5 partly due to lack of demonstrated

Dysphagia, or difficulty swallowing, commonly occurs among
older adults with advanced dementia as part of the disease
process. For these patients, concerns may arise about the ade-
quacy of nutritional intake, aspiration, and the risk of develop-
ing aspiration pneumonia. Potential patient discomfort (eg,
coughing while eating) and weight loss may also be of concern.
When these problems persist despite optimal management of
potential contributing factors, progression of dementia is usu-
ally the main cause, signaling the terminal phase of this
condition.1
Speech-language pathologists (SLPs) are typically called
upon to assess swallowing function and feeding disorders in
patients with advanced dementia.2-4 The SLP is asked to assess
whether a patient is able to safely continue oral nutrition and
how to optimize nutritional intake while mitigating aspiration
risk. Family members may be asked to authorize long-term
tube feeding via percutaneous endoscopic gastrostomy (PEG).
However, this practice appears to be declining among patients
benefit and substantial long-term treatment burdens. Further-
more, with the growth of palliative care and increasing empha-
sis on patient-centered care, maximizing quality of life has
become paramount and the option of continued assisted oral
feeding or “comfort feeding” has been promoted as a less bur-
densome and more comfort-oriented approach in this
population.6
Recent medical practice guidelines recommend against
feeding tube use in patients with advanced dementia, and
instead, propose continued hand feeding as tolerated, consistent
1
Graduate School of Social Service, Fordham University, New York, NY, USA
2
3
New York Medical College, Valhalla, New York, NY, USA
Division of Geriatric and Palliative Medicine, University of Michigan and VA
Ann Arbor GRECC, Ann Arbor, MI, USA
Corresponding Author:
Cathy Berkman, PhD, MSW, Graduate School of Social Service, Fordham
University, 113 West 60 Street, New York, NY 10023, USA.
Email: berkman@fordham.edu
2 American Journal of Hospice & Palliative Medicine®
with a comfort-based approach.7,8 The American Speech-
Language-Hearing Association (ASHA) has adopted similar
approaches and called for person-centered decisions regarding
diet consistency or tube feeding, emphasizing the importance
of care preferences and informed choices.9,10
Concerns on the part of SLPs are important, as formal swal-
lowing evaluations have increased over time, and physicians
tasked with making decisions about feeding often rely on the
SLP swallowing evaluation before determining whether the
patient should be fed by hand or tube. Given the lack of evi-
dence for benefit or applicability of the swallowing evaluation
for many patients, we conducted a national survey of SLPs to
ascertain their knowledge, attitudes, and reported practices
regarding recommendations for feeding tubes in patients with
advanced dementia. In that survey, 11 many respondents
demonstrated deficits in knowledge, according to the best evi-
dence in the literature, regarding the applicability and clinical
outcomes relevant to swallowing evaluations in patient with
advanced dementia. Many also expressed fairly low self-
confidence and preparedness in their ability to manage dyspha-
gia in such patients. However, 70% of respondents were willing
to consider recommending oral feeding even if the patient was
deemed to be at high risk of aspiration, consistent with current
approaches in palliative care. Respondents who stated they
would make such a recommendation demonstrated greater
evidence-based knowledge than those who would not make
such a recommendation.11
More recently,12-15 commentators have called for the reex-
amination of modified-texture diets, which are commonly used
to manage oropharyngeal dysphagia in advanced dementia and
other neurodegenerative disorders. This type of diet, which
utilizes thickened liquids or pureed foods, is often unpalata-
ble,15 may carry an increased risk of dehydration,15 and has not
been shown to decrease the risk of clinically apparent aspira-
tion pneumonia.16 Modified–texture diets have long been rec-
ommended by SLPs and other clinicians17 to reduce the risk of
aspiration,18,19 and as such diets come under scrutiny it will be
important to follow changing attitudes and practices. In this
light, we have explored the qualitative data from our study to
further characterize the circumstances under which the SLPs
were likely to recommend continued oral nutritional intake
despite perceived risk of aspiration. Such specific information
not only illustrates if and when SLPs would make such a rec-
ommendation, but can help establish a baseline as further evi-
dence about clinical practice emerges.
Methods
Design
A mail survey of SLPs was conducted. The identity of respon-
dents was anonymous. This research was approved by the Insti-
tutional Review Boards of St Vincent’s Hospital and Fordham
University. Consent was indicated by mailing a completed
questionnaire to the researchers.
Sample
The study population consisted of ASHA members. Inclusion
criteria were derived from ASHA information and included: (1)
certification as an SLP; (2) listed as a clinical service provider;
(3) working with patients at least 18 years old; and (4)
employed in a general medical hospital, nursing home, or home
health agency. Audiologists and students were excluded.
A systematic random sample of 1500 eligible members was
selected from the ASHA mailing list. An invitation letter, sur-
vey, and self-addressed stamped envelope were mailed to the
1379 members who met eligibility criteria. A postcard was
included to be mailed separately indicating whether the mem-
ber completed a questionnaire or declined participation.
Among eligible members, 749 completed the questionnaire.
Those who did not mail the postcard received a second mailing.
Final determination of eligibility was based on two items in the
questionnaire: (1) currently in direct practice; and (2) had eval-
uated a patient with advanced dementia for dysphagia in the
last two years. This resulted in eliminating 18 respondents. The
final sample was 731 with a 53.7% response rate.
Measures
Responses to a single question were analyzed: Are there cir-
cumstances in which you would recommend oral feeding (for a
patient with advanced dementia) even though your evaluation
identifies a high risk of aspiration? The 509 respondents
(70.0%) who answered “Yes” were then asked to “describe the
circumstances under which you might recommend oral feeding
if there is a high risk of aspiration.”
Data Analysis Plan
A grounded theory approach with constant comparison analysis
was used to code the data.20 Two of the researchers (authors)
independently read through all of the responses and then coded
the responses using in vivo coding. Multiple codes were often
assigned to the same words in a response. The researchers then
jointly reviewed the first level codes to eliminate redundancy in
the codes and to achieve consensus on assigning the codes to
the text. They then worked together to combine the first level
codes into larger categories and then combined the larger cate-
gories into themes.
Results
Six themes emerged from the narrative responses and are listed
below in descending order of number of responses for each
theme.
Patient Wishes Are Known
The most common reason given for recommending oral feed-
ing was to act in accordance with the patient’s known wishes,
most often on the basis of an advance directive. Oral commu-
nication with a surrogate decision maker or a family member
Berkman et al
indicating that a feeding tube was not wanted was also cited as
a reason. Characteristic statements include:
Patient has advance directives stating “no feeding tubes”
If patient has a living will and has requested no tube feedings
Proxy refuses non-oral feeding methods.
If a patient has clearly stated or the family believes that the
patient would not have wanted PEG placement we honor these
wishes and place the person on the safest diet texture . . . to opti-
mize their safety and quality of life.
Quality of Life and/or Poor Prognosis
Continued oral feeding was recommended for comfort or plea-
sure, particularly for patients who are near the end of life.
Quality of life issues were given precedence for patients who
are perceived to have a poor prognosis and very limited oppor-
tunities for enjoyment. Situations frequently mentioned for
which oral feeding was recommended included that the patient
is able to eat, is interested in doing so, or demonstrates pleasure
when eating.
If there is a poor prognosis for life expectancy, and the patient
wants to eat/enjoys eating . . . , I recommend oral feeding.
If the patient is terminal but still has some interest in eating, I
recommend PO feeding.
Patient demonstrates enjoyment of food.
Quality of life considerations. Many times eating is the only
pleasure left for a person.
If patient’s quality of life is better with oral feeding . . . I would
keep oral.
If . . . it is determined that multiple medical problems and
dementia prevent any quality of life, I recommend oral feeding
Aspiration Risk Mitigation Strategies Employed
Respondents stated that they would recommend oral feeding if
aspiration risk was mitigated. Several patient characteristics
and related factors were cited by SLP respondents as poten-
tially mitigating the aspiration risk. The first was if the patient
has a favorable degree of alertness or is somewhat mobile:
Patient . . . is attentive to feeding.
If the patient is functionally mobile and therefore overall risk of
pneumonia is decreased.
Aspiration risk might also be mitigated if good oral hygiene
is practiced by formal or informal caregivers:
Stress importance of oral care . . .
3
I would strongly recommend daily or BID oral care to reduce
risk that aspiration will result in pneumonia.
Close supervision of feeding by healthcare providers or
other caregivers who are willing and/or able to implement safe
swallowing strategies was another condition that was
mentioned:
. . . especially when the patient can be supervised or fed in a
safe manner . . .
Food related activities are strictly supervised to reduce risk.
. . . there is adequate staffing present and adequately educated
to supervise/cue patient appropriately
. . . patient’s caregiver is highly motivated and willing to be
trained in safest swallowing strategies.
Finally, respondents mentioned that they would recommend
oral feeding if their recommendations for the safest diet con-
sistencies (eg, thickened liquids or pureed foods) or feeding
techniques (ie, those that minimized the potential for aspira-
tion) were followed.
Recommendation is usually for the least aspirated material,
that is, safest consistency with postural compensation that can
be implemented relatively “passively” or without need for much
cooperation by the person with dementia
I would specify all useful feeding, positioning, and cueing stra-
tegies to the caregiver and caregiver would have to demonstrate
these strategies
When I know family will continue to feed the patient despite
education re: aspiration I will educate them on which texture/
thickness is relatively safer (not safe) with regards to aspiration
. . . after extensive explanation of risks for aspiration with any
p.o, will discuss considering a conservative diet for patient, that is
puree/with thickened liquids
Physician Preference
Oral feeding was recommended based on the physician’s deci-
sion. This was most commonly described as a collaboration
between the physician and the family, with a recommendation
from the SLP. Some noted that it is the family’s ultimate deci-
sion, albeit in conjunction with the physician. Whether the
family was considering the patient’s presumed wishes in their
decision was not mentioned in statements for this theme, dis-
tinguishing it from the first theme in which the family is imple-
menting the patient’s preferences.
The ultimate tube feeding discussion is between the MD and the
family.
I meet with MD and family and we decide as a team what to do.
The family makes the ultimate decision! I convey my findings to the
MD, and the MD contacts the family.
4 American Journal of Hospice & Palliative Medicine®
If patient has no family, I discuss it with physician, and “allow”
physician to make decision.
Documentation of Risk
A commonly stated condition for recommending oral feeding is
that the risk of aspiration is well-understood by the family and/
or this risk was clearly documented. Some stated that the fam-
ily member or surrogate is required to sign a waiver.
If the patient is identified as a high risk of aspiration for all
food/consistencies, positioning, etc. oral feeding would not be rec-
ommended. But, if the family refuses G-tube, PEG tube placement,
oral feeding continues with the safest possible diet but against
medical advice with a refusal of G-tube documented in patient’s
chart.
If patient and family sign a waiver and decide to assume risk.
If the medical decision maker wants to continue oral feeding
(knowing the risk involved), I would make . . . recommendation of
NPO . . . then order the safest diet with least possible risk of aspira-
tion and have a waiver signed by DPOA that the risks of continued
oral feeding have been explained to them.
Speech-Language Pathologists’ Awareness of Evidence
Base
Some respondents mentioned that current evidence does not
support tube feeding in advanced dementia. They understood
that tube feeding in this population does not lower the risk of
aspiration, has not been shown to improve quality of life or
necessarily improve nutritional status, and carries other asso-
ciated risks.
I am aware of research which suggests that (1) Non-oral does
not guarantee no aspiration; (2) non-oral in advanced dementia/
advanced Alzheimer’s does not necessarily improve nutritional
status.
Feeding tubes do not improve life quality of patients with
advanced dementia—and they increase aspiration risks, infection
risks, etc.
Non-oral does not guarantee no aspiration.
Aspiration pneumonia may or may not be linked to PO intake.
Aspiration pneumonia can occur from saliva as well.
Discussion
As important members of interprofessional teams, SLPs pos-
sess specific skill sets directed at the assessment and manage-
ment of dysphagia. Their expertise is often sought to assess
swallowing problems arising in patients with dementia. This
qualitative exploration yielded six themes that capture impor-
tant considerations influencing SLPs’ decisions about whether
to recommend continued oral nutritional intake in such patients
deemed to be at high risk of aspiration based on their
evaluation.
Speech-language pathologists stated they were more likely
to recommend continued oral feeding if the patient’s desire to
avoid a feeding tube was clearly documented in a living will or
medical chart, stated by a healthcare agent or a family caregiver
with knowledge of a patient’s wishes, or if the patient’s phy-
sician was opposed to insertion of a feeding tube. Additionally,
patient factors appeared to influence SLPs’ recommendations
favoring continued oral feeding, for example, if a patient was
perceived to be near the end of life or was “very old,” or
conversely, if the patient seemed sufficiently alert and could
protect his/her airway. However, many SLPs in this sample
expressed concern about recommending continued oral feeding
for patients with advanced dementia at high risk of aspiration,
yet they expressed a desire to support family and patient wishes
and to support oral feeding to increase comfort and quality of
life. Although both practices are consistent with guidelines
from professional organizations,2,21-23 ambivalence about what
the SLP deems the appropriate course of action or wishing to
act in two seemingly conflicting ways, could lead to consider-
able moral distress.
Many SLPs mentioned their role in educating family care-
givers and facility or hospital staff in several areas, including
the potential risks of continued oral feeding in patients with
advanced dementia, as well as techniques to maintain the safest
food textures and positioning for each patient, the need to
maintain excellent oral care and hygiene to reduce aspiration
risk, and the need for patient supervision and assistance with
eating. However, suboptimal staff-to-patient ratios are the cur-
rent reality in many skilled nursing facilities,24,25 posing an
important challenge to nursing implementation of individua-
lized assisted-feeding recommendations.
Another challenge is the notion of perceived legal risks,26 as
noted by the SLPs who would recommend continued oral
intake only if the risk of aspiration was clearly documented,
and clearly understood by family members. Several SLPs
stated they require signed waivers from family members of
patients residing in facilities before recommending or
“allowing” comfort feeding. However, the use of such waivers
is problematic. The waiver aims to shield practitioners and
institutions from liability and deviates from the ethical obliga-
tion to serve the best interests of the patient. Elevating provider
or institutional interests above those of the patient is also incon-
sistent with the fiduciary responsibility of those who serve the
patient, a responsibility based on a relationship of trust where-
upon a patient can rely on a more knowledgeable or more
powerful person or entity to act in his or her best interests.27
Speech-language pathologists might reasonably feel pressured
to comply with an institutional requirement for such a waiver,
adding to the potential moral distress that s/he may experience
in striving to practice in a truly patient-centered manner.28
It is possible that ongoing efforts to integrate palliative care
education during SLP training and continuing education may
mitigate potential moral distress, clarify the SLP’s role in the
Berkman et al
management of dysphagia for patients with advanced dementia
near the end of life, and increase the likelihood of recommend-
ing continued oral feeding for these patients.29
Strengths and Limitations
To our knowledge, this is the first study to ask SLPs about
circumstances in which they would recommend oral feeding
for patients with advanced dementia whom they deem to have a
high risk of aspiration. The study had a large national sample,
representing SLPs with a wide range of experience working in
diverse practice settings. The response rate was relatively high
for a mail survey, and a high percentage of respondents
answered the open-ended question.
Since the time that our study was conducted, recommenda-
tions30 for palliative care approaches in dementia care continue
to grow, with the aim of achieving high quality patient-centered
care. Efforts to incorporate palliative care principles into SLP
education, training, and continuing education are likewise
ongoing. However, we believe current realities, such as sub-
optimal facility staffing levels and concerns about medical-
legal liability in dysphagia management remain barriers to
implementing truly patient-centered care for many patients
with advanced dementia.
Future Research
Future research should assess which of the findings reported
here have changed over the several years since the study was
conducted. Research is needed to assess whether SLPs are
receiving education, in graduate programs and/or continuing
education, that would question the common practice of restrict-
ing older patients to thickened liquids and or textured foods in
an effort to reduce the risk of aspiration given the recognized
risks7 and potential negative effects on patient comfort.8,9
Rehabilitative and compensatory strategies such as postural
changes, efforts to improve swallowing skill and coordination,
as well as feeding strategies need to be studied further to ascer-
tain relevant health and quality-of-life outcomes.31 Scholarly
inquiry is also needed to distinguish perceived legal risks26
from actual ones, and to identify other system barriers that
influence SLP recommendations for comfort-oriented
approaches.
Conclusion
Having to make recommendations for continued oral feeding
for patients with advanced dementia at high risk of aspiration
may be perceived by SLPs as ethically challenging. It is pos-
sible that ongoing efforts to integrate palliative care education
during SLP training and continuing education may mitigate
potential moral distress, clarify the SLP’s role in the manage-
ment of dysphagia for patients with advanced dementia near
the end of life, and increase the likelihood of recommending
continued oral feeding for these patients.
5
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the
research, authorship, and/or publication of this article: This study was
supported by a grant from the Richard Grand Foundation
ORCID iD
Cathy Berkman https://orcid.org/0000-0002-1776-3931
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