Below is this week’s schedule for Palliative Medicine October 2013 conferences. Journal
articles to be discussed by Dr. Susan Merel are attached. Betsy
Palliative Medicine Conferences - 2013-2014 - Tuesdays 8:00-9:00am, HMC, Pat
Steel Bldg, Rm.2097
NOTE: Conferences are now available via Go-To-Meeting participation at:
SCCA conference room G6121
UWMC Family Medicine Conference Room E-304
October 2013
Tuesday, October 8, 2013 – Palliative Medicine Conference - Journal Club
Topic: Barriers to Excellent End-of-life Care for Patients with Dementia, Greg A. Sachs, MD, Joseph W.
Shega, MD, Deon Cox-Hayley, DO, JGIM Vol 19, Oct 2004; p 1057-1063.
Quality of Hospice Care for Individuals with Dementia. Jennifer S. Albrecht, PhD, Ann L. Gruber-Baldini,
PhD, Erik K. Fromme, MD, Jessina C. McGregor, PhD, David S. H. Lee, PharmD, PhD, and Jon P.
Furuno, PhD; JAGS. Vol 61, July 2013; 1060-1065. [Editorial Comments by Kathleen Unroe, MD and
Diane E. Meier, M, pp 1212–1214]
Quality of Hospice Care for Individuals with Dementia. Kathleen T. Unroe, MD, MHA, Diane E. Meier,
MD, JAGS 61:1212–1214, 2013
Presenter: Susan Merel, MD, Attending Physician, General Internal Medicine, Univ. WA.
Time: 8:00-9:00am
Location: HMC, PSB Rm 2097
Tuesday, October 8, 2013 – Didactics Conference
Topic: Informed Consent/Decisional Capacity
Presenter: Susan Merel, MD, Attending Physician, General Internal Medicine, Univ. WA.
Time: 9:00-10:00am
Location: HMC, PSB Rm 2097 (NOTE: These conferences are not available either via web-conference or
conference call.)
----------------------------------------------------------------------------------------------------------------------------------Tuesday, October 15, 2013 – Palliative Medicine Conference - Grand Rounds
Topic: Part 1: Grief, Bereavement/Legacy (2hour session continued through didactics conference)
Presenters: Carol Kummet, Palliative Care Social Worker, Social Work, Univ. WA and Katie Schlenker,
DO, Clin Inst, Med, Univ. WA
Time: 8:00-9:00am
Location: HMC, PSB Rm 2097
Tuesday, October 15, 2013 – Didactics Conference
Topic: Part 1: Grief, Bereavement/Legacy (continued from Grand Rounds conference)
Presenter: Carol Kummet, Palliative Care Social Worker, Social Work, Univ. WA and Katie Schlenker,
DO, Clin Inst, Med, Univ. WA
Time: 9:00-10:00am
Location: HMC, PSB Rm 2097
------------------------------------------------------------------------------------------------------------------------------------Tuesday, October 22, 2013 - Palliative Care Center of Excellence Conference
Topic: "Exclusion of People with Cognitive Impairment and Dementia from Geriatrics Research"
Presenter: Janelle Taylor, PhD, Assoc. Prof, Dept Anthropology, Univ. WA.
Time: 8:00-9:00am
Location: HMC, PSB Rm 2097
Tuesday, October 22, 2013 – Fellows meeting replacing Death Rounds this week only)
Time: 9:00-10:00am
Location: HMC, PSB Rm 2097
---------------------------------------------------------------------------------------------------------------------------------------Tuesday, October 29, 2013 – Palliative Medicine Conference - Grand Rounds
Topic: Part 2: Grief, Bereavement/Legacy (2hour session continued through didactics conference)
Presenters: Carol Kummet, Palliative Care Social Worker, Social Work, Univ. WA and Katie Schlenker,
DO, Clin Inst, Med, Univ. WA
Time: 8:00-9:00am
Location: HMC, PSB Rm 2097
Tuesday, October 29, 2013 – Didactics Conference
Topic: Part 2: Grief, Bereavement/Legacy (continued from Grand Rounds conference)
Presenter: Carol Kummet and Katie Schlenker
Time: 9:00-10:00am
Location: HMC, PSB Rm 2097
Betsy Zickler
On-site Administrator, PSN/QI
206.744.9561
Program Admin., Palliative Medicine and Gerontology Fellowship Programs
Box 359755, Rm. 5048 PSB
206.744.9102; 206.744.9976 (PM Fax)
Harborview Medical Ctr, 325 9th Avenue, Seattle, WA 98104
Email: eazickle@u.washington.edu
Quality of Hospice Care for Individuals with Dementia
D
ementia affected an estimated 5 million older Americans in 2012; by 2050, prevalence is predicted to
approach 14 million, and half of these individuals will be
aged 85 and older.1,2 The late stages of dementia are characterized by major challenges to quality of life, including
inability to communicate, initiate movement, or walk; difficulty eating and swallowing; agitation; incontinence; and
a high risk of infection and pressure ulcers. The sources of
suffering for individuals with dementia go beyond fear,
depression, and confusion and include significant physical
symptoms, including pain, coughing, choking, dyspnea,
agitation, and weakness.3,4 The need for palliative care
focused on maximizing quality of life and keeping people
with dementia in familiar, safe, and reassuring environments is clear. Most nursing home residents have cognitive
impairment,1,5 and nursing homes are the site of death for
half of people with dementia.6 Nearly all family members
of nursing home residents with advanced dementia report
that comfort is the primary goal for their care.7 Nonetheless, a minority of Medicare decedents with dementia are
referred to hospice before death,8 and repeated burdensome transitions between hospitals and nursing homes and
feeding tube placement commonly occur, despite lack of
evidence of quality of life or survival benefit.6,9–11
Dementia is increasingly recognized as a terminal disease, meaning that it is the proximate cause of death for
persons with the diagnosis. Although it leads inexorably to
death, the decline is often slow and gradual, and—like
other progressive conditions such as heart failure, chronic
obstructive pulmonary disease, frailty, and end-stage renal
disease—prognostic uncertainty is the norm rather than the
exception.12 In 2011, more than half of individuals in hospice across all settings had a noncancer primary diagnosis.8
The eligibility criteria under the Medicare hospice benefit
were originally designed to serve persons with terminal
cancer and require that two physicians certify the individual is within 6 months of death. Despite the difficulty of
accurately identifying a 6-month prognosis in persons with
advanced dementia, roughly 30% of all individuals with
dementia enter hospice, and the primary diagnosis is
dementia in 13% of all individuals in hospice.8
The article by Albrecht and colleagues in this month’s
issue compares quality of hospice care for individuals with
and without dementia in a national sample. Quality was
measured in this study by identifying relevant metrics
collected in the 2007 National Home and Hospice Care
Survey. The authors, following the National Consensus
Project for Quality Palliative Care guidelines (www.nation
DOI: 10.1111/jgs.12318
JAGS 61:1212–1214, 2013
© 2013, Copyright the Authors
Journal compilation © 2013, The American Geriatrics Society
alconsensusproject.org), chose report of depression, report
of pain at the last assessment in hospice care, presence of
standing orders for pain medication if pain was reported,
greater than Stage 2 pressure ulcers, use of antibiotics,
tube feeding, lack of continuity of residence, emergency
care, hospice for 3 days or less, presence of a do-not-resuscitate order, and presence of any advanced directive as
measures.
More than half of these individuals with dementia in
hospice lived in nursing homes, compared with only 20% of
individuals in hospice with other terminal conditions.9 The
individuals in hospice with dementia were also more likely to
receive care from a for-profit hospice and to have a significantly longer duration of hospice care than individuals in
hospice with other terminal diagnoses, consistent with previous work that has found that for-profit hospices enroll higher
numbers of individuals with dementia than not-for-profit
hospices.13 Nearly one-quarter of these beneficiaries with
dementia survived beyond the 6-month limit. Others have
found that individuals with noncancer diagnoses and nursing
home residents tend to have longer lengths of stay in hospice.14,15 In addition, rates of disenrollment from hospice
were higher for individuals with dementia in this study.
Disenrollment from hospice represents a disruption in care
and has been associated with high rates of subsequent hospitalization.16,17 The rigid Medicare hospice benefit prognostication requirement for diseases with highly uncertain
prognoses creates a lack of fit of the current hospice model
for individuals with dementia and is one explanation for
these findings. Although individuals with dementia in hospice
were twice as likely to undergo placement of a feeding tube,
few other differences in quality of care were observed
between individuals in hospice with and without dementia in
this sample. Individuals with dementia were less likely than
individuals in hospice with other terminal diagnoses to
undergo burdensome transitions or to have pain identified.
How can access to high quality of palliative care be
improved for this growing and uniquely vulnerable population? Inclusion of metrics relevant to the needs of persons
with advanced dementia, many of whom live in a nursing
home or other residential facility, are required in valuebased purchasing and other regulatory frameworks to
incentivize delivery of this care. Important measures of
quality for this population include placement of a feeding
tube, rate of burdensome transitions to acute care, receipt
of care concordant with preferences, and symptom,
including pain, identification and management.18,19
A growing body of evidence fails to demonstrate any
benefit in terms of quality or quantity of life associated
0002-8614/13/$15.00
JAGS
JULY 2013–VOL. 61, NO. 7
with tube feeding in advanced dementia11,20,21 and some
evidence of harm.22 In the Choosing Wisely Campaign, the
American Geriatrics Society and the American Academy of
Hospice and Palliative Medicine recommended against use
of feeding tubes in persons with advanced dementia.23
Placement of a feeding tube and presence of an advance
directive related to feeding should be quality measures for
persons with advanced dementia.
Transitions to the hospital are burdensome for these
frail individuals, involving the trauma of the transfer and
care from unfamiliar staff, use of invasive and painful interventions such as venipuncture and intravenous line placement, and the high risk of complications, such as delirium.
Some transitions may be required, for example, for treatment of a fracture, but most are of uncertain or no benefit.
Transitions near the end of life may occur because of financial disincentives for caring for acutely ill nursing home residents (e.g., bed hold policies, readmission to the facility
after hospitalization under the more highly reimbursed
skilled nursing benefit), inadequate nursing home staffing
levels, inadequate staff training in management of symptoms or care of acute illness, and lack of clearly established
and documented person-centered goals for care.24 Agreement on a framework to define avoidable hospitalizations is
needed so that standardized definitions can be incorporated
into nursing home regulatory and quality measurement.
Loss of ability to communicate and need for surrogate
decision-making is a universal problem in this population,
impeding goals of care discussions and assessment of symptoms.25 The Physician Orders for Life Sustaining Treatment
(POLST) form, including the versions that several states
have adopted, is a set of medical orders based on individual
or surrogate preferences for a range of specific treatments
commonly encountered near the end of life (http://www.
polst.org/). It is designed for the needs of people with
serious, life-limiting illness with a life expectancy of 1 to
2 years and is especially important for people with
advanced dementia because of the high likelihood of acute
illness and need for a goal-directed framework for medical
decision-making. The POLST form allows patients and
surrogates to choose from the full array of treatment
options, depending upon their goal preferences, including
whether to employ cardiopulmonary resuscitation, intensive
care unit care, hospitalization, and tube feeding and thus
can guide discussions between families, surrogate decisionmakers, and providers before the inevitable acute decompensation. Use of the POLST is associated with significantly
higher likelihood of preference concordant care26 and
should be a required quality metric for all persons with serious advanced illness, especially those with advanced
dementia, whether or not they are receiving hospice care.
Pain assessment and treatment are included in the current paradigm of quality measurement in end-of-life care.
As the authors discuss, pain assessment methods were not
well described in their data set. Quality pain assessment in
advanced dementia should require the use of validated
instruments reliant on staff observation for behavioral
signs of pain and discomfort, not individual report, and
designed for use in this population.27–29
As the authors highlight in their discussion, recently
endorsed National Quality Forum metrics for hospice and
palliative care do not adequately address important
EDITORIALS
1213
outcomes for this population, as noted above (http://tinyurl.
com/am85sxu). Incorporating quality measures for hospice
and palliative care that are relevant to the population
being served is essential.
The current study says nothing about quality of care
and quality of life for the two-thirds of persons dying with
dementia who do not receive hospice care. Reasons for
low use of hospice of individuals with dementia are
unknown but probably include prognostic uncertainty, the
requirement for residential care and nursing home facility
staff to call in an outside team to care for their residents,
and the failure to recognize dementia as the terminal illness that it is. All persons with dementia and their families
and caregivers require palliative care focused on achieving
the best possible quality of life.11,12 Palliative care meeting
quality guidelines should be the standard of care for people with advanced dementia, regardless of care setting and
independent of prognosis, and is especially important in
highly regulated and routinely understaffed settings such
as nursing homes. Access to palliative care cannot be limited to enrollment in hospice for people with dementia living at home or in facilities. Polices are needed that
promote access to high-quality palliative care for individuals with advanced dementia regardless of prognosis.18
Kathleen T. Unroe, MD, MHA
Division of General Internal Medicine and Geriatrics
School of Medicine, Indiana University, Indianapolis
Indiana
Diane E. Meier, MD
Department of Geriatrics and Palliative Medicine
Icahn School of Medicine at Mount Sinai, New York City
New York
ACKNOWLEDGMENTS
Conflict of Interest: Dr. Meier serves on the Board of Directors of the Visiting Nurse Service of New York Hospice.
Author Contributions: The editorial was drafted, edited, and revised by both authors.
Sponsor’s Role: None.
REFERENCES
1. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures. Washington, DC: Alzheimer’s Association, 2012.
2. Hebert LE, Weuve J, Scherr PA et al. Alzheimer disease in the United States
(2010–2050) estimated using the 2010 census. Neurology 2013;
(Epub ahead of print). Feb 6.
3. Aminoff BZ, Adunsky A. Dying dementia patients: Too much suffering,
too little palliation. Am J Hosp Palliat Care 2005;22:344–348.
4. Hanson LC, Eckert JK, Dobbs D et al. Symptom experience of dying longterm care residents. J Am Geriatr Soc 2008;56:91–98.
5. Center to Advance Palliative Care. Improving Palliative Care in Nursing
Homes. New York: Center to Advance Palliative Care, 2008.
6. Teno JM, Gozalo PL, Bynum JP et al. Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in
2000, 2005, and 2009. JAMA 2013;309:470–477.
7. Mitchell SL, Teno JM, Kiely DK et al. The clinical course of advanced
dementia. N Engl J Med 2009;361:1529–1538.
8. National Hospice and Palliative Care Organization. NHPCO Facts and
Figures: Hospice Care in America. Alexandria, VA: National Hospice and
Palliative Care Organization 2011.
1214
EDITORIALS
9. Albrecht JS, Gruber-Baldini AL, Fromme EK et al. Quality of hospice care
for patients with dementia. J Am Geriatr Soc 2013;61:1060–1065.
10. Callahan CM, Arling G, Tu W et al. Transitions in care for older adults
with and without dementia. J Am Geriatr Soc 2012;60:813–820.
11. Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its
timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
12. Mitchell SL, Miller SC, Teno JM et al. Prediction of 6-month survival of
nursing home residents with advanced dementia using ADEPT vs hospice
eligibility guidelines. JAMA 2010;304:1929–1935.
13. Wachterman MW, Marcantonio ER, Davis RB et al. Association of hospice
agency profit status with patient diagnosis, location of care, and length of
stay. JAMA 2011;305:472–479.
14. Miller SC, Lima J, Gozalo PL et al. The growth of hospice care in
U.S. nursing homes. J Am Geriatr Soc 2010;58:1481–1488.
15. Unroe KT, Greiner MA, Colon-Emeric C et al. Associations between
published quality ratings of skilled nursing facilities and outcomes of
Medicare beneficiaries with heart failure. J Am Med Dir Assoc 2012;
13:188. e1–6.
16. Carlson MD, Herrin J, Du Q et al. Impact of hospice disenrollment on
health care use and Medicare expenditures for patients with cancer. J Clin
Oncol 2010;28:4371–4375.
17. Unroe KT, Greiner MA, Johnson KS et al. Racial differences in hospice use
and patterns of care after enrollment in hospice among Medicare beneficiaries with heart failure. Am Heart J 2012;163:987–993. e3.
18. Meier DE, Lim B, Carlson MD. Raising the standard: Palliative care in
nursing homes. Health Aff (Millwood) 2010;29:136–140.
19. Sachs GA. Dying from dementia. N Engl J Med 2009;361:1595–1596.
JULY 2013–VOL. 61, NO. 7
JAGS
20. Finucane TE, Christmas C, Travis K. Tube feeding in patients with
advanced dementia: A review of the evidence. JAMA 1999;282:1365–1370.
21. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people
with advanced dementia. Cochrane Database Syst Rev 2009;2:CD007209.
22. Teno JM, Gozalo PL, Lee IC et al. Does hospice improve quality of care
for persons dying from dementia? J Am Geriatr Soc 2011;59:1531–1536.
23. Fischberg D, Bull J, Casarett D et al. Five things physicians and patients
should question in hospice and palliative medicine. J Pain Symptom
Manage 2013;45:595–605.
24. Department of Health and Human Services. Hospitalizations of Nursing
Home Residents: Background and Options. Washington, DC: U.S. Department of Health and Human Services 2011.
25. Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care
for patients with dementia. J Gen Intern Med 2004;19:1057–1063.
26. Hickman SE, Nelson CA, Moss AH et al. The consistency between treatments provided to nursing facility residents and orders on the physician
orders for life-sustaining treatment form. J Am Geriatr Soc 2011;59:2091–
2099.
27. Herr K, Bursch H, Ersek M et al. Use of pain-behavioral assessment tools
in the nursing home: Expert consensus recommendations for practice.
J Gerontol Nurs 2010;36:18–29; quiz 30–11.
28. Zwakhalen SM, Hamers JP, Abu-Saad HH et al. Pain in elderly people
with severe dementia: A systematic review of behavioural pain assessment
tools. BMC Geriatr 2006;6:3.
29. Zwakhalen SM, van der Steen JT, Najim MD. Which score most likely represents pain on the observational PAINAD pain scale for patients with
dementia? J Am Med Dir Assoc 2012;13:384–389.
Barriers to Excellent End-of-life Care for Patients
with Dementia
Volume
19,
2004
Blackwell
O
RIGIN
Publishing,
A October
L ARTIC
Ltd.
LE
Greg A. Sachs, MD, Joseph W. Shega, MD, Deon Cox-Hayley, DO
While great strides have been made recently in improving endof-life care in the United States, people with dementia often
die with inadequate pain control, with feeding tubes in place,
and without the benefits of hospice care. In this paper, we
discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia,
including dementia not being viewed as a terminal illness;
the nature of the course and treatment decisions in advanced
dementia; assessment and management of symptoms; the
caregiver experience and bereavement; and health systems
issues. We suggest approaches for overcoming these barriers
in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will
be called upon to provide primary care for a growing number
of patients dying with dementia. There are great opportunities
to improve end-of-life care for this vulnerable and underserved
population.
KEY WORDS: palliative care; end-of-life care; dementia;
Alzheimer’s disease; hospice.
J GEN INTERN MED 2004;19:1057–1063.
G
reat strides are being made in improving end-of-life
care in the United States. Leading journals have
1,2
published major series on end-of-life care. Palliative care
fellowships are increasing in number and major research
and training initiatives in end-of-life care have been
3–5
funded.
Despite this progress, people with dementia
still receive suboptimal end-of-life care. Many patients
with dementia die with feeding tubes in place, up to 44%
6–8
of nursing home residents with dementia in some states,
despite research suggesting little to no benefit from this
9,10
treatment.
Dementia increases the risk of inadequate
pain treatment; even severe and persistent pain goes un11
treated in many patients with dementia. Finally, while
hospice use is increasing, only 7% of patients enrolled in
12
hospice in 2001 had dementia. Thus, about 50,000 patients
with dementia were cared for in hospice in 2001—versus
13
roughly 10 times that number dying with dementia. All
of this occurs at a time when the number of people with
14
dementia is growing tremendously. Why is it so difficult to
provide excellent end-of-life care for people with dementia?
In this paper, we discuss the most important and
persistent challenges to providing excellent end-of-life care
for patients with dementia. These barriers to quality end-of-
Received from the Department of Medicine (GAS, JWS, DCH),
Section of Geriatrics, The University of Chicago, Chicago, Ill.
Address correspondence and requests for reprints to Dr.
Shega: Department of Medicine, Section of Geriatrics, The University of Chicago, 5841 South Maryland Avenue (MC 6098),
Chicago, IL 60637 (e-mail: jshega@medicine.bsd.uchicago.edu).
life care include dementia not being viewed as a terminal
illness; the nature of the course and treatment decisions
in advanced dementia; assessment and management of
symptoms; the caregiver experience and bereavement; and
health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical
practice, and public policy. As general internists probably
are the largest group of physicians providing primary care
for patients with dementia, we believe they have the greatest
opportunity to improve on the status quo for this vulnerable and underserved population.
Is Dementia a Terminal Illness?
To enroll a patient in hospice in the United States
under Medicare (and most insurance plans), a physician
must certify that the patient has a 6-month life expectancy
and the patient (or family if the patient lacks decisional
capacity) must agree to forgo rehospitalization for conditions related to the primary diagnosis. Patients usually
forgo CPR and many other life-sustaining treatments, too.
While many in palliative medicine argue persuasively that
one need not be dying to receive measures directed at comfort,15 it is clear that identifying an individual as dying or
terminally ill more readily allows clinicians, patients, and
families to consider hospice and other palliative measures.
Because identifying a patient as dying represents a critical
first step toward hospice enrollment, this represents a major
obstacle for people with dementia. Even though many
experts in the field characterize Alzheimer disease (AD) and
other progressive dementias as terminal illnesses, professionals and family members have difficulty viewing
dementia as an illness from which one dies. The National
Center for Health Statistics did not include AD as a rankable
cause of death until 1994.16 Studies of death certificates
continue to document dementia being overlooked as a
17–19
cause of or contributor to death.
In a recent model
demonstration program aimed at integrating palliative care
20
into the ongoing care of patients with dementia, 70% of
families interviewed after the death of the patient believed
the patient was terminally ill and dying prior to the death.
More than two thirds of those family members, however,
believed that the patient was dying from something other
than dementia (unpublished data).
Dementia differs considerably from diseases such as
cancer that are viewed as death causing in two important
ways. First, the time from diagnosis to death is usually
much longer in dementia. The length of survival in AD, for
example, is typically several years. While a recent study
suggests the median survival may be as short as 4 years,21
most other studies report a median survival around 9
22
years. Given this protracted course and the gradual
1057
1058
Sachs et al., End-of-life Care and Dementia
loss of cognition and function, physicians and families
understandably struggle to view someone with dementia as
dying. Efforts to diagnose patients at earlier stages, even
at a predementia or mild cognitive impairment state, as well
as the development of new treatments that can be used in
23
advanced dementia, may make it even harder for many
to view patients with dementia as dying.
Second, even if people can appreciate that dementias
are progressive, incurable diseases, families and clinicians
may continue to have difficulty viewing them as causing
death. Patients’ relatives and our medicine house staff in
our geriatrics clinics routinely ask, “What do people with
dementia actually die from?” Pneumonia, cardiac disease,
and cerebrovascular disease tend to be the diagnoses listed
as the cause of death on death certificates for demented
and nondemented individuals alike.17,19 Most families and
clinicians probably view the terminal event, a pneumonia
or urinary tract infection, as the proximate cause of death
24
in someone with dementia. People with dementia in its
advanced stages, however, do develop apraxia, dysphagia,
and decreased mobility that increase the risk of infection,
25,26
malnutrition, and other adverse outcomes.
If considered at all, the dementia is probably seen as predisposing or contributing to the terminal pneumonia,
rather than the cause of death.
The Disease Course and Nature of Treatment
Decisions
Many diseases that cause death, including many
cancers, reach an advanced or metastatic stage and then
follow a fairly predictable downhill course over weeks or
27,28
months.
This makes it possible to recognize a terminal
phase, predict a life expectancy of less than 6 months, and
refer to hospice. Many had hoped that one could similarly
identify prognostic markers in noncancer diagnoses,
including dementia, which would reliably predict imminent
29,30
death.
Unfortunately, potential prognostic markers for
advanced dementia (functional dependency, recurrent hospitalizations, and weight loss of 10% or more in preceding
6 months) that were incorporated into guidelines published
by the National Hospice Organization (now NHPCO) have
not accurately predicted 6-month life expectancy in
31,32
subsequent work.
In addition, Christakis and Escarce
demonstrated that dementia is the hospice diagnosis with
the greatest variability around the median length of sur33
vival. Given the lack of reliable prognostic markers and
variability in survival, physicians are understandably
tentative in referring patients with dementia to hospice. The
nature of the terminal events, primarily infections, and the
treatment decisions that surround them make the trajectory in advanced dementia even more complicated. When
a patient with cancer enters the final stages, a predictable
trajectory occurs, making it easier to estimate a 6-month
prognosis (see Fig. 1). In congestive heart failure (CHF) or
chronic obstructive pulmonary disease, a sawtooth pattern
with a slight downhill trajectory depicts the overall course
JGIM
FIGURE 1. Death trajectory typical in cancer. Reprinted with
permission from Approaching Death ©1997, by the Institute of
Medicine, Courtesy of the National Academies Press, Washington, DC.
(Fig. 2). Potentially life-threatening, acute exacerbations
mark the course of these diseases, but many of these crises
are treatable. Difficulty arises because the acute exacerbation that becomes the terminal event looks so similar to
all of the previous, reversible downturns. Identifying the
terminal phase of these noncancer diagnoses remains a
challenge.
Dementia is typically thought of as having a gradual
downhill course. Our experience20 suggests the true trajectory of the typical patient dying from dementia looks
more like Figure 2, though with a steeper overall downward
slope. The gradual downhill course is punctuated by de34
clines caused by acute illness that often are accompanied
by delirium and decrements in mental and functional
status. Unlike the patient with CHF who recovers from
an acute illness near the prior baseline, the patient with
dementia more commonly establishes a new, lower level of
35
cognitive and physical functioning.
FIGURE 2. Death trajectory typical in chronic diseases. Reprinted
with permission from Approaching Death ©1997, by the Institute
of Medicine, Courtesy of the National Academies Press, Washington, DC.
JGIM
Volume 19, October 2004
As in the case of a CHF exacerbation, any one of the
downturns in dementia could become the terminal event,
especially if life-sustaining treatment is withheld. In our
experience, survival appears to be quite sensitive to the
treatment provided. For example, two patients with advanced
dementia at similar stages (nonverbal, functionally dependent
in all activities of daily living) had radically different courses
because of decisions made by the families. When one
patient experienced a dramatic decline in oral intake and
was found to have his first pneumonia, the patient’s wife
refused antibiotics and chose hospice care. That patient
soon died peacefully at home with hospice care. At a similar
juncture, the second patient’s family chose hospitalization,
intravenous antibiotics, and tube feeding. Over the next
18 months, this patient was hospitalized seven more times
for infections and alterations in mental status before
her family opted for home hospice care. The second patient
also died peacefully at home.
Our experience with these two patients is consistent
with Volicer and colleagues’ seminal study of antibiotic
use for fever in advanced dementia. They demonstrated
that antibiotics in the end stage of dementia offered no
improvement in either survival or comfort over comfort
care measures alone.36 Patients who were not end stage,
however, did live considerably longer if they received antibiotics—like our second patient above. Thus, the primary
care physician can play a pivotal role when decisions need
to be made about interventions such as hospitalization,
antibiotics, intravenous fluid, or enteral nutrition. Primary
care physicians should guide discussions about care in
light of a patient’s prior wishes, the agreed upon goals of
therapy, and the potential benefits and burdens of the
treatment options.
Another key distinction for patients dying from dementia is the nature of the interventions typically required
in these downturns. In patients with metastatic cancer,
aggressive treatments such as cardiopulmonary resuscitation or mechanical ventilation are mostly ineffective.
Therapies for a severe CHF exacerbation—admission to an
intensive care unit, right heart catheterization, mechanical
ventilation, and intravenous medications—may be effective
but are invasive, burdensome, and expensive. In a person
with dementia, the therapies for a typical downturn caused
by an infection—intravenous antibiotics, fluids, and
adjustment of electrolytes—are fairly routine, not burdensome, relatively inexpensive, and usually effective. Thus,
if palliative care is chosen, both the treating physician and
the family of the patient with dementia must consider
forgoing treatments that seem in the short run ordinary,
minimally invasive, relatively painless, and effective. This
can be emotionally and psychologically challenging. By
withholding treatment such as antibiotics, families may feel
that they are directly responsible for the patient’s dying. It
takes skillful communication and support from the primary
care physician to help families negotiate the emotional and
psychological challenges, including guilt, which surround
end-of-life decision making in dementia.37
1059
Assessment and Management of Symptoms
Whether or not patients with dementia receive hospice
services, the cognitive, communication, functional, and
behavioral problems that arise in dementia make it more
difficult to provide palliative care to this population. As a
patient’s cognitive and communication abilities decline, it
becomes harder to assess symptoms. For example, assessing pain in cancer patients is relatively straightforward—
one asks the patient. Patients with dementia, however,
have difficulties with recall, interpretation of sensations,
and verbal expression. In the advanced stages of the disease, instead of relying on the patient’s report of pain alone,
experts recommend utilizing a combination of patient report,
caregiver report, and direct observation of the patient.38
Experts also suggest considering undiagnosed or under39
treated pain if changes in behavior or mental status occur.
While dementia does not cause physical pain per se, patients
with dementia are likely to be suffering from arthritis,
osteoporosis, peripheral neuropathy, and many other paincausing comorbid conditions that increase in prevalence
with advanced age. Thus, the assessment and management of pain in dementia requires a broad and thoughtful
approach by physicians involving histories from patient
and caregiver; a careful physical exam including observation for nonverbal indicators of pain; and an openness
to empirical trials of analgesics when pain is suspected,
including when pain might be the underlying cause of
nonspecific symptoms such as decreased oral intake or
agitation or other challenging behaviors.38,40
Patients with dementia frequently suffer from behavioral
problems and psychiatric symptoms that warrant treatment. Such challenging and difficult to manage symptoms
may include anxiety, depression, paranoia, visual or auditory hallucinations, aggression, agitation, and shouting.
While an extensive review is beyond the scope of this paper,
there are many pharmacological and nonpharmacological
41,42
approaches for managing these symptoms in dementia.
Treatment of these and other symptoms may require referral
to a psychiatrist or other specialist.
Caregiving and the Nature of Bereavement
in Dementia
Primary care physicians appreciate that family caregivers play a pivotal role in the management of older
patients with any chronic illness, often doing so over a
period of many years at significant financial and personal
cost. In fact, a recent study found caregivers who were
categorized as “strained” to have a 63% increased mortality
rate compared with family members who were not acting
43
as caregivers for an ill relative. Caregiving for someone
with dementia appears to be especially burdensome. Ory
44
et al. found that compared to nondementia caregivers,
dementia caregivers reported more hours spent on caregiving, more detrimental effects on employment, more
emotional and physical strain, and a greater likelihood of
1060
JGIM
Sachs et al., End-of-life Care and Dementia
suffering mental or physical health problems due to caregiving. Families caring for someone with dementia face
additional conflict-provoking decisions over the course of the
disease including getting the patient to stop driving; taking
over the management of finances and medications; and, in
many cases, eventually relocating the patient to a relative’s
45,46
home or a nursing home.
Finally, as increasing numbers
47
of patients with dementia die in nursing homes, usually
without the benefit of hospice, families rarely receive any
48,49
kind of bereavement services.
Because the nature of
bereavement may be different in dementia, grieving at the
time of diagnosis or when the patient no longer recognizes
family, for example, grief and bereavement services may need
50,51
to be restructured.
Families can benefit greatly from
physicians directing them to a social worker, local chapter
of the Alzheimer’s Association, and other resources in the
52
community that can provide assistance and support.
Health System Challenges
As others have pointed out, Medicare was established
for and remains oriented toward treatment of acute
53,54
illnesses.
Medicare’s policies create discontinuities in
care for patients with dementia who experience repeated
acute illnesses superimposed on a chronic decline. In our
experience, the following pattern of care is typical: acute
illness resulting in hospitalization; followed by relatively
sharp decline in cognition and function; starting, restarting, or increasing the intensity of home care services;
plateau of function at new baseline below prehospital
55
baseline ; discontinuation of Medicare-covered nursing,
therapy, and other services; and continued, gradual decline
in function due to underlying dementia until the next acute
56
illness restarts the cycle.
The financial incentives built into the existing health
system often work directly against the provision of pallia-
57
tive care, especially for people with dementia who are
long-term residents of nursing homes. Continuity of care,
both in terms of location and familiar staff, is important
58
for these patients, especially because they are at signifi59
cant risk of delirium and distress on transfer to hospital.
Yet, the financial incentives for health care providers are
aligned against providing end-of-life care in the nursing
60
home. As patients require more time from staff to manage
symptoms and provide comfort near death, the facility ends
up bearing this increased cost without receiving additional
reimbursement. If the patient is transferred to the hospital
for acute care, the nursing facility not only avoids the cost
of the increased staff time, they may be paid a “bed hold”
if the patient’s stay is under Medicaid. Hospital transfer
also decreases the facility’s chance of both liability for
“allowing a patient to die,” as it can be perceived by misinformed family members, and for regulatory citations
for weight loss or dehydration that occur as death approaches.61 The treating physician has a financial incentive
to transfer the patient because Medicare reimbursement
for an admission visit for a hospitalized patient greatly
62
exceeds that for a subsequent nursing home visit. The
hospital likely also makes money especially because fewer
63
resources tend to be used for the oldest old. All of the
involved professionals and institutions have financial incentives to admit the dying dementia patient to the hospital. The only parties who may not be better off from
that transfer are the patient and family.
Overcoming the Barriers
We believe that important strides can be made in overcoming the barriers to excellent end-of-life care in dementia
through action taken on the educational, clinical practice,
and health system levels. General internists are positioned
to play important roles on all of these levels (see Table 1).
Table 1. Barriers to Excellent End-of-life Care for Patients with Dementia and Potential Remedies
Barrier
Dementia not seen as a terminal illness appropriate
for palliative care approach
Nature of advanced dementia and treatment decisions
Psychological and emotional challenges of withholding
treatments such as antibiotics and tube feeding
Assessment and management of pain in cognitively
impaired individuals
Management of behavioral problems and psychiatric
symptoms
Challenging caregiver stress and bereavement issues
Economic and systemic disincentives for providing
excellent end-of-life care to patients with dementia
Potential Remedy
Educate health professionals and the public; publicize innovative
models integrating palliative and primary care
Educate health professionals
Have physicians shape patient care plans in more palliative fashion,
sharing greater portion of decision-making burden
More broadly disseminate expert guidance on this topic
Routinely utilize assessments by patient and caregiver, as well as
observe patient
Consider behavior change as a trigger for investigation and possible
treatment of pain
Educate health professionals
Refer to psychiatrists, geriatric psychiatrists, and other specialists
Educate of health professionals
Develop innovative bereavement programs
Replicate and disseminate innovative programs
Modify payment systems to align incentives
Incorporate measures of end-of-life care for patients with dementia
to quality improvement and quality measurement efforts
JGIM
Volume 19, October 2004
On the educational level, much more needs to be done
to teach physicians and other health professionals about
dementia and end-of-life care. The increasing prevalence
of dementia warrants its being a featured topic as palliative
care and end-of-life care gain stronger footholds in medical
and nursing school curricula. As residency review bodies
and specialty boards incorporate end-of-life care competencies into their requirements and exams, the special
skills required for caring for people with dementia should
be recognized. Continuing education is needed to reach
professionals already in practice. The EPEC (Educating
Physicians in End-of-Life Care) program has reached a
large number of practicing physicians, but its modules
contain little on dementia. The American Geriatrics Society
is working on a revised version of EPEC that would address
geriatric content areas, including dementia.
Public education is greatly needed. The Last Acts
campaign has demonstrated the benefits of working with
television writers and others in the media to educate the
public and reshape our culture’s attitudes toward death.
Public education will be critical for addressing the appropriateness of a palliative care approach for persons with
dementia, even though dementia may not be seen as a
terminal illness or causing death, as families face difficult
treatment decisions such as antibiotics and tube feeding.
Physicians can help educate the general public and families
caring for relatives with dementia about these issues.
Individual physicians can do much to improve endof-life care for patients with dementia. Understanding at
diagnosis that a patient with a progressive dementia will lose
decision-making capacity puts a premium on physicians
discussing advance care planning with patients and
families. Over time, primary care physicians can counsel
families of patients with dementia gradually toward more
palliation and away from diagnostic procedures and treatments that may cause more burdens than benefits. While
prognostic scales lack the desired precision for an individual patient, many of the items found in hospice referral
guidelines for dementia are associated with about a 50%
6-month mortality in populations of patients with dementia.64–66 We have found these markers adequate to
at least begin discussing hospice with families: 1) FAST
stage 7C (nonambulatory, loss of meaningful conversation,
dependent in most or all activities of daily living) combined with developing complications such as weight loss
of 10% or more, recurrent infections, and multiple pressure
29,64
sores
; 2) hip fracture or pneumonia in advanced de65
66
mentia ; and 3) need for insertion of a feeding tube.
Physicians can incorporate assessment of pain, behavioral
problems, and caregiver stress into routine visits with
patients and families affected by dementia. They can
become familiar with national and local resources re67,68
garding palliative care for patients with dementia.
On the organization level, clinical practices and health
systems should look to end-of-life care for patients with
dementia as an area ripe for quality improvement (QI)
efforts. Tools for undertaking QI programs in end-of-life
1061
care are available through the Institute for Healthcare
69,70
Improvement, the medical literature, and web sites.
Organizations that monitor or evaluate quality of care, such
as the Joint Commission on Accreditation of Healthcare
Organizations (JCAHO) and National Committee for
Quality Assurance (NCQA), need to add end-of-life care for
people with dementia to the list of issues they examine.
Quality indicators, in nursing homes, for example, need to
acknowledge that many conditions including dehydration
and weight loss will occur near the end-of-life even with
61
the best care. Efforts should be made to try and align the
financial incentives in the system with the provision of palliative care. For example, nursing facilities might receive a
slightly higher rate of reimbursement for patients who are
identified as having primarily palliative care goals, perhaps
countering the incentive to transfer dying patients to the
hospital. The entry criteria for hospice might be relaxed to
facilitate earlier referral of patients with dementia without
waiting until death is clearly imminent, or perhaps hospices
could be allowed to perform palliative care consultations
for these patients.60 We believe, however, that innovative
models aiming to integrate palliative care into the ongoing
primary care of patients over years rather than months
20,53,70
need to be explored further.
These models are especially important because, as discussed above, dementia
presents such challenges for prognostication, recognition
of a terminal phase, and treatment decision making. It is
the nature of the illness, not physician behavior or faulty
prognostic scales, which is the root cause of the problem
and that calls for creative solutions. Many of the demonstration programs funded under the Robert Wood Johnson
Foundation’s Promoting Excellence in End-of-Life Care
initiative downplay the need for accurately estimating a
6-month prognosis and switching completely from a curative
to a hospice approach. Instead, these programs target
patients with life-altering, eventually fatal illnesses, such
as cancer and dementia, and offer a gradually changing
blend of curative, restorative, and palliative care services
as patients decline in function and the goals of care shift.
Some do this within a fee-for-service framework, while
others take place under managed care, as Lynn et al. have
proposed with the Medicaring model.71
Conclusion
We are cautiously optimistic about the prospects for
improving end-of-life care for people with dementia. Innovative programs demonstrate that excellent end-of-life care for
20,67
patients with dementia is quite attainable.
We believe
that there will need to be greater efforts that specifically
target this growing portion of the population and that general
internists should play a major role in this movement.
This research was supported by the Robert Wood Johnson
Foundation through PEACE: Palliative Excellence in Alzheimer
Care Efforts. Dr. Sachs also was supported by the Hulda B. and
1062
Sachs et al., End-of-life Care and Dementia
Maurice L. Rothschild Foundation. Dr. Shega also was supported
by the Geriatric Academic Program Award from the National
Institutes on Aging to the University of Chicago (K12AG00488-10).
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Quality of Hospice Care for Individuals with Dementia
Jennifer S. Albrecht, PhD,* Ann L. Gruber-Baldini, PhD,† Erik K. Fromme, MD,‡§
Jessina C. McGregor, PhD,k David S. H. Lee, PharmD, PhD,k and Jon P. Furuno, PhDk
[Editorial Comments by Kathleen Unroe, MD and Diane E. Meier, MD pp 1212–1214]
BACKGROUND: Patients with dementia constitute an
increasing proportion of hospice enrollees, yet little is
known about the quality of hospice care for this population. The aim of this study was to quantify differences in
quality of care measures between hospice patients with
and without dementia.
DESIGN: Cross-sectional analysis of data.
SETTING: 2007 National Home and Hospice Care
Survey.
PARTICIPANTS: Four thousand seven hundred eleven
discharges from hospice care.
MEASUREMENTS: A primary diagnosis of dementia at
discharge was defined according to International Classification of Diseases, Ninth Revision, codes (290.0–290.4x,
294.0, 294.1, 294.8, 331.0–331.2, 331.7, and 331.8).
Quality-of-care measures included enrollment in hospice in
the last 3 days of life, receiving tube feeding, depression,
receiving antibiotics, lack of advanced directive or do not
resuscitate order, Stage II or greater pressure ulcers, emergency care, lack of continuity of residence, and a report of
pain at last assessment.
RESULTS: Four hundred fifty (9.5%) individuals were
discharged with a primary diagnosis of dementia. In multivariable analysis, individuals with dementia were more
likely to receive tube feeding (odds ratio (OR) = 2.6,
95% confidence interval (CI) = 1.4–4.5) and to have
greater continuity of residence (OR = 1.8, 95% CI = 1.1–
3.0) than other individuals in hospice and less likely to
From the *Department of Pharmaceutical Health Services Research,
School of Pharmacy, University of Maryland, Baltimore, Maryland;
†
Department of Epidemiology and Public Health, University of Maryland
School of Medicine, Baltimore, Maryland; ‡Division of Hematology and
Medical Oncology, Knight Cancer Institute, Oregon Health & Science
University, §Center for Ethics in Healthcare, Oregon Health & Science
University, and kDepartment of Pharmacy Practice, Oregon State
University and College of Pharmacy, Oregon Health & Science University,
Portland, Oregon.
Address correspondence to Jennifer S. Albrecht, Pharmaceutical Health
Services Research, School of Pharmacy, University of Maryland, 220 Arch
Street, 12th floor, Room 01–234, Baltimore, MD 21201.
E-mail: jalbrecht@rx.umaryland.edu
DOI: 10.1111/jgs.12316
JAGS 61:1060–1065, 2013
© 2013, Copyright the Authors
Journal compilation © 2013, The American Geriatrics Society
have a report of pain at last assessment (OR = 0.6, 95%
CI = 0.3–0.9).
CONCLUSIONS: The majority of quality-of-care measures examined did not differ between individuals in hospice with and without dementia. Use of tube feeding in
hospice care and methods of pain assessment and treatment
in individuals with dementia should be considered as
potential quality-of-care measures. J Am Geriatr Soc
61:1060–1065, 2013.
Key words: dementia; hospice and palliative medicine;
quality of care; NHHCS
H
ospice was originally conceived for individuals with
cancer, yet individuals with Alzheimer’s disease and
other dementias (hereafter referred to as dementia) form
an increasing proportion of those enrolling in hospice
care.1,2 Caring for individuals with dementia poses significant challenges to hospice providers because their needs
may differ from those of other individuals in hospice, and
they may be less able to communicate their symptoms or
provide information on symptom improvement after treatment.3
Assessing the quality of hospice care provided to
individuals with dementia is essential to ensure the highest level of care in this population. Nonetheless, in its
2011 report to Congress, the Medicare Payment Advisory
Commission noted that research on the quality of hospice care, especially for individuals with dementia, is
lacking, despite the mandate for public reporting of quality data.2
It is unclear how well existing quality measures for
end-of-life care address the needs of individuals with
dementia. The National Consensus Project for Quality Palliative Care (NCP) proposed eight domains for high-quality care at the end of life and developed clinical guidelines
to address these domains.4 The guidelines call for the regular assessment and management of pain and nonpain
0002-8614/13/$15.00
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JULY 2013–VOL. 61, NO. 7
symptoms but do not mention eating problems, which are
common in individuals with advanced dementia and often
lead to feeding tube use in these individuals.4,5 Furthermore, because individuals with dementia have difficulty
reporting symptoms, pain assessment and management is
often challenging.
The objective of this study was to quantify differences
in quality measures, based upon domains proposed by the
NCP and previous research, between individuals in hospice
with and without dementia using data from the 2007
National Home and Hospice Care Survey (NHHCS), a
nationally representative sample of individuals in hospice.4,6–11 Differences in quality measures between individuals with and without dementia may highlight areas where
current quality measures are not sufficient to ensure the
highest quality end-of-life care for individuals with dementia. How agency and facility characteristics may affect differences between individuals in hospice with and without
dementia with regard to these quality measures was also
examined. To the knowledge of the authors, this is the first
study to compare quality measures between individuals
with and without dementia receiving hospice care in a
national sample.
METHODS
Data Source
The Centers for Disease Control and Prevention and the
National Center for Health Statistics conducted the 2007
NHHCS, a nationally representative sample of U.S. home
health and hospice agencies designed to provide descriptive
information on the agencies and their staff, services, and
patients.12 The survey used a stratified two-stage probability sample design. In the first stage, 1,545 agencies were
systematically and randomly sampled with probability proportional to agency size. In the second stage, up to 10 hospice discharges per hospice agency and a combination of
up to 10 current home health recipients and individuals
discharged from hospice per mixed agency were randomly
selected. Discharge from hospice was defined as discharge
(alive or dead) from a hospice agency during the 3-month
period beginning 4 months before the agency interview.12
Data were collected through in-person interviews with the
hospice agency directors and designated staff in consultation with medical records. Neither individuals nor family
members were interviewed. In total, 4,733 interviews were
performed. Data included demographic variables, clinical
characteristics, and hospice facility characteristics. Each
individual received only one current primary diagnosis
code, which referred to the individual’s primary diagnosis
at discharge.
QUALITY IN INDIVIDUALS IN HOSPICE WITH DEMENTIA
1061
care.4 In this study it was decided to focus primarily on
physical, psychological, and ethical aspects of care. Therefore, based on the NCP guidelines, the following measures
were identified in the 2007 NHHCS data set: report of
depression, report of pain at the last assessment in hospice
care, presence of standing orders for pain medication, presence of a do-not-resuscitate (DNR) order, and presence of
any advanced directive.
This study also sought to include quality-of-care measures that were important in individuals with dementia,
so previously published measures associated with poorer
quality of care for individuals with dementia were identified, particularly those identified for individuals at the end
of life. These included receiving tube feeding, use of emergency services, presence of a Stage II or greater pressure
ulcer, enrollment in hospice care in the last 3 days of life,
continuity of residence, and antibiotic use.8–11
Variable Definitions
A primary diagnosis of dementia at discharge was defined
as International Classification of Diseases, Ninth Revision
(ICD-9) codes 290.0, 290.1x, 290.2x, 290.3, 290.4x,
294.0, 294.1, 294.8, 331.0, 331.1x, 331.2, 331.7, and
331.8.11–13. All other current primary diagnoses at discharge were grouped as “other.”13–15
Tube feeding was defined as the use of any type of
tube feeding or total parenteral nutrition at any time during hospice care. Pressure ulcers were staged according to
the highest stage of any current or past pressure ulcer
while in hospice care. Use of emergency services was
defined as emergency care at a hospital, doctor’s office, or
outpatient clinic. Continuity of residence from when first
and last received hospice care was “same” or “different”
place. Enrollment in hospice in the last 3 days of life was
examined only in individuals who were dead at discharge.
Presence of pain at the individual’s last assessment was
recorded as a dichotomous variable. Pain measurement
tools included 0 to 5 and 0 to 10 scales; a word scale
(mild, moderate, severe); 0 to 10 and 0 to 5 face scales;
the Face, Legs, Activity, Cry, Consolability (FLACC) scale;
observation of the individual; and individual’s or family’s
description. The data did not indicate cut-points for the
presence or absence of pain.
The names of up to 25 medications that the individual
received in the 7 days before and on the day of death or
discharge were recorded in the NHHCS data set and categorized using Lexicon Plus (Cerner Multum, Inc., Denver,
CO). Using the Multum categories, a variable for receiving
any antibiotic in the last 7 days of hospice care was
created.
Data Analysis
Identification of Hospice Quality-of-Care Measures for
Individuals with Dementia
The NCP domains for high-quality care at the end of life
encompass structure and processes of care; physical aspects
of care; psychological and psychiatric aspects of care;
social aspects of care; spiritual, religious, and existential
aspects of care; cultural aspects of care; care of the imminently dying individual; and ethical and legal aspects of
Data analysis was performed using SAS version 9.2 (SAS
Institute, Inc., Cary, NC). All estimates were weighted to
account for the survey’s complex sampling design, but frequencies were presented unweighted so that the underlying data distribution was evident. Descriptive statistics
were calculated for demographic characteristics (e.g., age,
sex, race or ethnicity, marital status) and characteristics
relating to hospice care quality (e.g., enrollment in
1062
ALBRECHT ET AL.
JULY 2013–VOL. 61, NO. 7
hospice in last 3 days of life, tube feeding, presence of an
advanced directive or DNR order, pressure ulcer stage,
use of emergency care, receiving antibiotics, continuity of
residence, and pain reported at last assessment). Comparisons between individuals with dementia and all others
were conducted using chi-square tests for categorical variables and t-tests for continuous variables. All tests were
assessed for statistical significance at P < .05.
To examine whether the older age of individuals with
dementia or facility-level characteristics explained observed
differences in quality of care, a separate logistic regression
equation was constructed for each quality-of-care measure.
The variables dementia, age at discharge, location of hospice care (private home, residential care place, nursing
home, or other (including agency inpatient and hospital)),
agency type (mixed or hospice only), profit status (for
profit or nonprofit), and metropolitan area (metropolitan
50,000 population, micropolitan 10,000–49,999 population, rural <10,000 population) were considered for inclusion in the models. When final models were obtained using
the process outlined above, effect modifiers identified using
the Breslow-Day test (with P .05), and their main
effects were examined. The Breslow-Day test was per-
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formed on unweighted data. Odds ratios (ORs) and corresponding 95% confidence intervals (95% CIs) were
reported.
The institutional review boards (IRBs) at the University of Maryland, Baltimore, and Oregon State University
determined that this study was exempt from IRB oversight
because of the use of publically available, fully de-identified data.
RESULTS
There were 4,733 hospice discharges included in the 2007
NHHCS, of which 450 (10%) had a current primary diagnosis of dementia (Table 1). Of these, 35% had Alzheimer’s
disease (ICD-9 code 331.0), 56% had other persistent mental disorders due to conditions classified elsewhere (ICD-9
code 294.8), and the remainder had other dementias.
Twenty-two individuals lacked a current primary diagnosis
and were excluded from the study, leaving 4,261 individuals with a diagnosis other than dementia who were included
in the analyses. Twenty-one percent of individuals with
dementia were discharged alive from hospice, compared
with 15% of all other individuals (P = .02).
Table 1. Characteristics of Individuals Discharged from Hospice in 2007 According to Dementia Status
Characteristic
Age, mean standard deviation
Days received hospice care, median
(interquartile range)
Length of hospice care >180 days,
n (%)
Sex, n (%)
Female
Male
Race, n (%)
Hispanic
White, non-Hispanic
Black, non-Hispanic
Other
Marital status, n (%)
Married
Widowed
Divorced
Other
Location of hospice care, n (%)
Private home
Residential care place
Nursing facility
Other
Dead at discharge, n (%)
Agency type, n (%)
Hospice only
Mixed hospice and home health
Profit status, n (%)
For-profit
Non-profit or public
Population of region, n (%)
>50,000
10,000–49,999
<10,000
All,
N = 4,733
Individuals with
Dementia, n = 450
All Other Individuals,
n = 4,261
P-Valuea
78 0.3
16 (4–61)
85 0.7
41 (6–170)
77 0.4
15 (4–54)
<.001
<.001
549 (10)
108 (24)
441 (9)
<.001
2,602 (55)
2,109 (45)
295 (61)
155 (39)
2,307 (54)
1,954 (46)
147
4,087
310
79
(4)
(86)
(8)
(2)
12
375
46
9
(3)
(87)
(9)
(1)
135
3,712
264
71
(4)
(87)
(7)
(2)
2,010
1,840
338
523
(42)
(38)
(7)
(13)
149
233
15
53
(38)
(51)
(1)
(10)
1,861
1,607
323
470
(43)
(37)
(7)
(13)
2,517
253
1,082
848
3,867
(49)
(6)
(23)
(22)
(85)
136
49
217
46
325
(24)
(13)
(54)
(10)
(79)
2,381
204
865
802
3,542
(52)
(5)
(20)
(24)
(85)
.20
.53
.002
<.001
3,230 (69)
1,481 (32)
344 (75)
106 (25)
2,886 (67)
1,375 (33)
1,094 (31)
3,617 (69)
144 (46)
306 (54)
950 (29)
3,311 (71)
1,731 (87)
1,749 (9)
1,231 (4)
172 (90)
176 (7)
102 (2)
1,559 (87)
1,573 (9)
1,129 (4)
.02
.10
<.001
.02
Percentages were weighted.
a
Chi-square for categorical variables, T-test for continuous variables.
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JULY 2013–VOL. 61, NO. 7
QUALITY IN INDIVIDUALS IN HOSPICE WITH DEMENTIA
Individuals with a primary current diagnosis of dementia differed significantly from other individuals in demographic and facility characteristics. Those with dementia
were older, with a mean age of 85 0.7 versus 77 0.4
(P < .001) and more likely to be widowed (51% vs 37%,
P = .002). Individuals with dementia were also more likely
to receive hospice care in a nursing facility (54% vs 20%,
P < .001); only 24% received care in a private home. Individuals with dementia were more likely to be served by forprofit hospices (46% vs 29%, P < .001) and to receive care
in larger metropolitan areas (90% vs 87%, P = .02). They
had a longer hospice stay, with a median 41 days (interquartile range (IQR) 6–170), versus 15 days (IQR 4–54;
P < .001) and were much more likely to have a hospice
stay of more than 180 days (23% vs 9%, P < .001).
Individuals with dementia differed significantly from
other individuals in hospice on several quality-of-care measures (Table 2). They were significantly more likely to
receive tube feeding (10% vs 4%, P < .001). Four percent
of individuals with dementia (compared with 5% of other
individuals in hospice) had a feeding restriction advance
directive. In individuals with dementia, receipt of tube
feeding did not differ between those with a feeding restriction advance directive and those without (11% vs 10%,
P = .95). Individuals with dementia were also more likely
to have a DNR order (88% vs 81%, P = .02) and have
greater continuity of residence (90% vs 83%, P = .006)
than other individuals in hospice.
Individuals with dementia were less likely to enroll in
hospice in the last 3 days of life (16% vs 26%, P = .05)
and less likely to have a report of pain at last assessment
(19% vs 31%, P = .006) or to have a standing order for
pain medication (56% vs 68%, P = .01) than other individuals in hospice.
1063
In individuals with a report of pain at last assessment,
there was a nonsignificant difference in the presence of
standing orders for pain medication between individuals
with and without dementia (78% vs 72%, P = .52), but in
individuals with no report of pain at last assessment, those
with dementia had fewer standing orders for pain medication (48% vs 65%, P = .004). Few individuals (2%) had
an advance directive restricting medication, so this was not
examined in the analyses.
The presence of pain was not assessed in all individuals in hospice, but individuals with dementia were no more
likely to have the report marked as “inapplicable/not
assessed” (13.5% vs 13.7%, P > .99) or “don’t know”
(3.3% vs 7.2%, P = .05) than other individuals in hospice.
In individuals with dementia, observation of the individual
was used most often to assess pain at the last visit (54%),
followed by a 0 to 10 numeric scale (19%) and the
FLACC scale (14%). No other significant unadjusted differences in quality-of-care measures were observed.
In multivariable logistic regression models, dementia
remained a significant predictor of tube feeding (OR = 2.6,
95% CI = 1.4, 4.5), no report of pain at last assessment
(OR = 0.6, 95% CI = 0.3, 0.9), and continuity of residence (OR = 1.8, 95% CI = 1.1, 3.0; Table 3). No effect
modification was observed. Table 3 shows the covariates
included in each logistic regression model.
DISCUSSION
Overall, few differences were observed in quality-of-care
measures between individuals with and without dementia
in this nationally representative sample of individuals in
hospice. Individuals with dementia were more likely to have
greater continuity of residence, a marker of better end-of-
Table 2. Hospice Care Quality Measures According to Dementia Status
All, N = 4,733
Individuals with
Dementia, n = 450
Care Quality Measure
Tube feeding
Emergency services
Do not resuscitate
Any advanced directive
Depressed
Pain at last assessment
Tool used for pain assessment
0–10 numeric scale
Face, Legs, Activity, Cry,
Consolability scale
Observation of individual
Other method
Standing order for pain medication
Stage II pressure ulcer
Length of hospice care 3 daysb
Continuity of residence
Receiving antibiotics in last 7 days
of hospice care
All Other Individuals,
n = 4,261
P-Valuea
N (%)
181
433
3,732
4,136
355
1,206
(5)
(6)
(81)
(90)
(7)
(30)
1,697 (40)
247 (7)
1,512
957
3,123
612
853
3,990
1,285
(37)
(16)
(67)
(13)
(24)
(83)
(28)
Percentages were weighted.
a
Chi-square for categorical variables, T-test for continuous variables.
b
Of those dead at discharge (n = 3,870).
28
32
371
402
38
71
(10)
(5)
(88)
(92)
(6)
(19)
86 (19)
33 (14)
217
94
248
66
55
402
109
(54)
(13)
(56)
(14)
(16)
(90)
(25)
153
401
3,367
3,722
317
1,135
(4)
(7)
(81)
(89)
(7)
(31)
<.001
.56
.02
.32
.78
.006
<.001
1,611 (43)
214 (6)
1,295
863
2,875
546
798
3,588
1,176
(34)
(17)
(68)
(13)
(26)
(83)
(29)
.01
.72
.05
.006
.44
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ALBRECHT ET AL.
JULY 2013–VOL. 61, NO. 7
Table 3. Likelihood of Dementia Regressed on Care
Quality Measures (N = 4,711)
Unadjusted
Odds Ratio (95%
Confidence Interval)
Care Quality Indicator
Tube feeding
Emergent services
Do not resuscitate
Any advanced directive
Depressed
Pain at last assessment
Standing order for pain medication
Stage II pressure ulcer
Length of hospice care 3 days
Continuity of residence
Received antibiotics in last 7 days
of hospice care
Adjusted
2.6
0.8
1.8
1.4
0.9
0.5
0.6
1.1
0.6
1.8
0.8
(1.6–4.4)
(0.4–1.7)
(1.1–2.9)
(0.7–2.7)
(0.4–2.1)
(0.3–0.8)
(0.4–0.9)
(0.7–1.7)
(0.4–1.0)
(1.1–2.9)
(0.5–1.3)
2.6
0.9
1.4
0.9
0.8
0.6
0.7
1.0
0.7
1.8
0.9
(1.4–4.5)a
(0.4–1.9)b
(0.6–2.3)c
(0.4–2.0)d
(0.4–2.0)e
(0.3–0.9)f
(0.5–1.0)g
(0.6–1.6)h
(0.4 1.1)i
(1.1–3.0)j
(0.6–1.4)k
In addition to dementia, models were adjusted for aage, location of hospice care, and profit status; bage, location of hospice care, profit status,
agency type, metropolitan status; cage, location of hospice care, and profit
status; dage, location of hospice care, and profit status; eage, location of
hospice care, profit status, agency type; fage; gage, profit status; hage, location of hospice care, profit status, agency type; ilocation of hospice care;
j
age, location of hospice care; and kage, location of hospice care, and
profit status.
life care, but individuals with dementia were also more
likely to receive tube feeding and less likely to have a report
of pain at last assessment than other individuals in hospice.
Tube feeding in individuals with dementia was common. The decision to institute tube feeding is highly emotional and often made by family members in conjunction
with care providers. Nevertheless, there is little evidence
that tube feeding is beneficial in individuals with advanced
dementia, and there are ethical concerns that it could
increase individual burden, especially regarding the use of
restraints to prevent self-extubation.10 A Cochrane review
reported no evidence of longer survival, better nutrition,
fewer pressure ulcers, or lower risk of aspiration pneumonia in individuals with advanced dementia receiving tube
feeding.16 Given the natural history of dementia, hospices
who enroll individuals with advanced dementia should discuss feeding tubes with surrogates, attempt to correct misunderstandings about effectiveness in this population, and
document feeding tube preferences in an advanced directive or a physician order for life-sustaining treatment paradigm form. In this sample, only 4% of individuals with
dementia had a feeding restriction advance directive. This
study suggests that tube feeding be considered as a potential
quality measure for individuals in hospice with dementia.
Individuals with dementia had fewer reports of pain at
their last assessment than other individuals in hospice.
Although less pain is a goal of palliative care, fewer
reports of pain may also indicate inadequate measurement
of pain. The NCP Clinical Practice Guidelines call for the
regular assessment and treatment of symptoms, including
pain, using validated methods.4 Their inability to accurately self-report complicates assessment of pain in individuals with severe dementia, but there are validated
behavioral observational scales recommended for use in
JAGS
individuals with severe cognitive impairment.17–19 According to these data, observational methods to assess pain
were used only half of the time, and the specific methods
used were not well described. Given that pain in individuals with dementia is often underassessed and undertreated,
it is important to ensure that validated methods of assessing pain are used,20 so second potential quality-of-care
measure for individuals in hospice with dementia might
include the use of validated methods to assess pain and
standing orders for pain medication.
This study had several limitations. The structure and
content of the NHHCS data limited the comparisons that
could be made, and it was not possible to link to agencylevel data that might have provided information about
whether these quality measures reflect hospice agency performance. Furthermore, the NHHCS does not provide
information on quality of life in individuals with dementia,
nor does it provide any information on individual or family satisfaction with care.
This is the first study, to the knowledge of the authors,
to examine these quality-of-care measures in a national sample of individuals in hospice with dementia and to compare
these measures in individuals with and without dementia.
The majority of quality-of-care measures examined in this
study did not differ between individuals in hospice with and
without dementia, suggesting that, despite their differences
from other individuals in hospice, individuals with dementia
are generally receiving the same quality of hospice care.
Nevertheless, individuals in hospice with dementia differed
from other individuals in hospice on two quality-of-care
measures that may indicate poorer quality of care. Specifically, use of tube feeding in hospice care and methods of
pain assessment and treatment in individuals with dementia
should be considered as potential quality-of-care measures.
Future studies should focus on the associations between
quality-of-care measures and important hospice outcomes,
including quality of life and individual and family satisfaction with hospice care.
ACKNOWLEDGMENTS
Conflict of Interest: The editor in chief has reviewed the
conflict of interest checklist provided by the authors and
has determined that the authors have no financial or any
other kind of personal conflicts with this paper.
This work was supported by Agency for Healthcare
Research and Quality Grant R36HS021068–01 (JSA);
National Institutes of Health Grants T32AG000262–14
(JSA), R03HS020970 (JCM), K07CA109511 (EKF), and
K01AI071015–05 (JPF); and National Heart, Lung, and
Blood Institute Grant R01 HL085706 (ALG).
Author Contributions: Albrecht J.: study conception
and design; drafting of the manuscript; acquisition, analysis, and interpretation of the data; approval of final version
of manuscript to be published. Furuno J.: study conception
and design, acquisition and interpretation of data, approval
of final version of manuscript to be published. Gruber-Baldini A., Fromme E., McGregor J., Lee D.: study conception
and design, interpretation of data, approval of final version
of manuscript to be published.
Sponsor’s Role: This study did not have a sponsor.
JAGS
JULY 2013–VOL. 61, NO. 7
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