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rates (Gutheil & Heyman, 2005; Patel, Sinuff, & of EOL treatment preferences with family or
Cook, 2004). significant other and knowing what friends
Myths about EOL care become barri- have gone through regarding EOL decision E
ers to care at the EOL. Such myths include making (Hirschman, Kapo, & Karlawish,
beliefs that advance care planning (ACP) 2008). Family members (i.e., surrogate decision
is the same as permission for euthanasia makers [SDMs]) of persons with moderate/
(Jeong, Higgins, & McMillan, 2007; Silviera, severe dementia, asked to make EOL treat-
DiPiero, Gerrity, & Feudtner, 2000), that life- ment decisions, are unclear about the goals
sustaining treatment (LST) at the EOL cannot of EOL, the dying trajectory likely for their
be withheld in the absence of evidence that loved one, and the lack information about
that would have been the patient’s wish, that palliative care and comfort options (Forbes,
withdrawing or withholding artificial nutri- Bern-Klug, & Gessert, 2002). Their decisions
tion and hydration (ANH) at the EOL from to withhold ANH are more influenced by
a terminally ill or permanently unconscious the interdisciplinary team, the resident’s pre-
patient is illegal, and that terminal sedation sumed quality of life, the stage of illness, and
is illegal even in the presence of intractable the comorbidities than by the AD instruc-
pain and suffering of a patient who is immi- tions (Lopez, Amella, Strumpf, Teno, &
nently dying (Meisel, Snyder, & Quill, 2000; Mitchell, 2010; The, Pasman, Onwuteaka-
Sabatino, n.d.). Philipsen, Ribbe, & van der Wal, 2002). Resi-
The most important factors for patients dents with advanced dementia are likely to
and families at the EOL in all care settings are have a feeding tube (FT) inserted if they do
pain and symptom management, information not have do not resuscitate (DNR) order, and/
about choices, preparation for death, having or there is no nurse practitioner or physician
a sense of completion, and being treated as assistant on the NH staff (Mitchell, Teno, Roy,
a whole person that includes discussion Kabumoto, & Mor, 2003). in NHs with low use
about treatment preferences (Hawkins, Ditto, of FTs—in comparison with high-use NHs—
Danks, & Smucker, 2005; Heyland et al., 2006; hand feeding is highly valued, the NH has
Steinhauser et al., 2000). Many community- a “home-like” environment that recognizes
dwelling older adults and their families are the importance of food in daily life and an
unaware of EOL care options, unable to dif- ACP process that includes family participa-
ferentiate between (physician) assisted sui- tion and palliative care options (Lopez et al.,
cide and euthanasia, misunderstand the 2010). High-use NHs have insufficient assis-
“double effect” in pain management, and do tive staff at meal times and fear both aspira-
not understand treatment refusal or treat- tion and noncompliance with regulations (in
ment withdrawal (Silviera et al., 2000). Staff regard to weight loss). Among hospitalized
and family in NHs and assisted living set- NH residents, lowest FT use was associated
tings differ regarding the kind and quality with White as compared with Black patients
of EOL care that is, or should be, provided in and those with an AD, DNR order, and no
these settings (Cartwright, 2002). information ANH orders (Teno et al., 2010).
about ACP is not coming from physicians and Although the most common reason for
other health care professionals (or the media) approving insertion of a FT was that it would
but rather from personal experience with prolong life and prevent aspiration, only
illness and death (Kahana, Dan, Kahana, & 40% of SDMs felt that it would improve the
Kercher, 2004; Lambert, McColl, Gilbert, & patient’s quality of life (Mitchell, Berkowitz,
Wong, 2005). Lawson, & Lipsitz, 2000). Most SDMs felt
Factors that facilitate ACP by persons they understood the benefits of a FT but not
with dementia include previous discussion the risks (83.0% vs. 48.9%), and less than half