Literature review
Decisions about life sustaining
treatment ought to be based on both the patients likely outcomes
of care and his or her informed preferences (Presidents Commission
1983, Guidelines 1987, National Center for the State Courts 1991, American
Thoracic Society 1991, Missouri Department of Health 1990). Over the
course of an illness, there is usually a transition in the goals of
care from the focus of extending and preserving life to that of maximizing
the patients comfort. The timing of this transition, and the degree
to which it is based on the informed preferences of the patient, are
important outcome variables in this changing health care market. The
current incentives are for maximal treatment unless the patient and/or
family requests limitation of treatment. In the coming decade, these
incentives may change such that less care is provided. The timing of
these transitions plays an important role in the dying experience. Too
often the transitions in goals of care occur late in the patients
illness. The Study to Understand Prognoses and Preferences for Risks
and Outcomes of Treatment (SUPPORT) found among a population of seriously
ill adults that nearly 40% of patients died after 10 or more days in
an ICU, on a ventilator, or in a coma. Over the five years of data collection,
the length of ICU stays prior to death did decrease. However, this reduction
was mainly due to a reduction in those with an ICU stay greater than
one month.
The frequency and timing
of DNR orders have been used as another marker of the aggressiveness
of care. Numerous investigators have found that DNR orders are written
within days of death (Gleeson 1990, Bedell 1984, Hakim 1996). Hakim
and colleagues further found that the use of DNR orders, even after
adjustment for patient preferences and prognoses, varied substantially
based on the patients age, the subspeciality of the attending
physician, and the hospital where the patient was being treated. Similarly,
in a study of seriously ill adults, Wenger (manuscript in preparation)
has found that the amount of time spent dying in an ICU, on a ventilator,
or in a coma varied substantially among five study sites.
To the contrary, researchers
have found a marked decline in aggressiveness of care based on a dramatic
increase in hospitalization of nursing home residents (Holtzman 1994,
Mor 1996). Of interest, Mor found that this reduction mainly occurred
among those with severe cognitive impairment (Mor 1996). In a similar
fashion, the locus of death and whether hospice referral was made is
another proxy measure for aggressiveness of care. A British study showed
that the majority of patients desired to die at home, yet many died
at other locations. Further, consulted family members indicated that
with more support, the patients wish to die at home could have
been honored (Townsend 1990). Additionally, the rate of dying in the
hospital has been found to vary based on geographic region of the country
(Mor 1993) and hospital service area (Pritchard 1996, manuscript under
review). This latter study found among the seriously ill that patient
preferences did not predict location of death; however, ecological variables
such as hospital utilization, reimbursement for hospice, and number
of physicians predicted dying in the hospital.
For any given patient, a
cogent argument could be made for the aggressiveness of medical care.
In reviewing the literature, we did not find any instrument that addressed
the appropriateness of aggressive care via a delphi panel
or that provided guidelines recognized by a professional society. Several
professional organizations (e.g., the Society of Critical Medicine,
the American Medical Association) have endorsed the concept of futility.
One study showed that a prognosis based futility guideline would not
impact dramatically on patients with one of nine life threatening illnesses
(Teno 1995). However, I would suggest that the measures below be examined
from a population perspective and that such measures (e.g., the time
spent in an ICU prior to death) be considered as screening instruments
to characterize how a health care system cares for dying patients.
Measures of aggressiveness
of care
--Timing of DNR orders (chart
based)
--Timing of important decisions about life sustaining treatment (chart
based)
--Actual and preferred site of death (depending on the medical records
system, will most likely need to be interviewer administered to ascertain
whether locus of dying was the preferred site)
--Time spent using aggressive treatment prior to death (chart based)
--Measures of patients preferred approach to care and the degree
to which that approach is being followed (interviewer administered)
--Medical care in the last 48 hours of life (chart based and interviewer
survey)
Finally, it is important
that consideration be given to the measure of survival time. Mortality
rates have been utilized for decades as a measure of quality of medical
care. A greatly shortened survival time is cause for concern and for
further clarification of whether such reduction is clinically appropriate.
In the ensuing sections,
proposed measures for each of these variables will be presented with
potential alternate versions based on a review of the literature. Next,
a listing of available tools to adjust for case-mix are
reviewed. Finally, I will end with recommendations for future research.
a. Timing of DNR orders (chart
based) Resuscitation is a paradigmatic decision for examination
of decision making at the end of life. Several researchers have examined
the timing of DNR order from hospital admission and death (Bedell 1984,
Gleeson 1990, Zimmerman 1986, Hakim 1996). The measure is operationalized
as the first official documentation of discussion and an
order to forego resuscitation.
b. Timing of important decisions
about life sustaining treatment (chart based) Each institution
can decide what the most important life sustaining treatments are in
the care of its patients. Based on work done in the SUPPORT project
and in an ongoing project to examine end of life care in an HMO, we
have utilized the enclosed instrument to examine decisions about use
of mechanical ventilators, vasopressors, feeding tubes, dialysis, and
antibiotics.
c. Site of death and whether
this was the preferred site of death The toolkit should examine
this domain in terms of the timing of referral to hospice (discussion
and the timing of transfer) and site of death based on review of the
medical record. I further recommend that an interview be conducted after
death with a close family member to ascertain where the patient died
and the degree to which this was the patients preferred site.
Where did (his/her) death
take place?
Hospital (ICU Unit) ....................
1
Hospital (other) ................
.......
2
Patient's Own Home .................
...3
Nursing home
or other long-term care facility.........4
Inpatient Hospice ........................
.5
Surrogates Home .........................
6
Other Home ..........................
.
..7
Other ..................................
.
8
In Transit to Medical Facility ..........9
Don't know ...............................
+
Was inpatient Hospice involved in the care of (PATIENT), so that (he/she)
stayed in a hospice facility?
Yes ........................................1
No .........................................2
For about how long did (PATIENT)
get inpatient hospice care before (his/her) death?
Less than one week ........................1
1 week to 4 weeks ......................
2
5 weeks to 8 weeks .....................
3
9 weeks to 12 weeks ...................
4
More than 12 weeks ............
.......5
Was outpatient Hospice involved
in the care of (PATIENT), so that a hospice worker cared for (him/her)
in the home?
Yes ........................................1
No .........................................2
For about how long did (PATIENT)
get outpatient hospice care before (his/her) death?
Less than one week .........................1
1 week to 4 weeks ......................
.2
5 weeks to 8 weeks .....................
.3
9 weeks to 12 weeks ........................4
More than 12 weeks ........................5
Do you think that (PLACE
OF DEATH) was where (PATIENT) would have most wanted to die?
Yes ........................................1
No .........................................2
What would have allowed (PATIENT)
to die at (his/her) preferred place of death? (open ended)
There are alternate versions
that have been proposed to get as this construct:
i. Townsend (1990) and colleagues
examined site of death among a cohort of patients.
ii. McCormick (1991) examined site of death among AIDS patients.
iii. McCusker (1984) developed an attitudinal survey to examine patients
preferences for dying at home.
v. Mor and colleagues created an instrument to measure preferences for
dying at home among patients with AIDS.
d. Time spent prior to dying using aggressive treatment (chart based)
- I would propose that a simple count of the number of days spent in
an ICU or on a ventilator be done among those who died in the hospital.
e. Measures of patients
preferred approach to care and the degree to which that approach is
being followed (interviewer administered) - The aim of these two questions
is to ascertain the degree to which patient preferences are not followed.
This question has adequate
test-retest performance (62% agreement with the majority of change occurring
from persons who stated dont know now stating a preference)
and a modification of this question has been used in a national study
of dying persons.
During the last week of (PATIENTS)
life, did (he/she) prefer a course of treatment that focused on extending
life as much as possible, even if it meant more pain and discomfort,
or on a plan of care that focused on relieving pain and discomfort as
much as possible, even if that meant not living as long?
Extend Life as much as possible...
...1
Relieve Pain or discomfort as much as
possible ...........
..
.2
Don't know
..............................
+
To what extent were these wishes or preferences followed in the medical
treatment (he/she) received during the last month of life? Were they
followed.
A great deal .......
...........1
Very Much ......
.............2
Moderately ........
...........3
Very Little ..........
..........4
Not at all .........
.............5
Don't know ......................+
f. Medical care in the last
48 hours of life (chart based and interviewer survey). There are four
chart based instruments which should be considered under this domain:
i. Support Team Assessment
Scedule (Higginson 1992) - This is a comprehensive instrument which
is completed by medical staff and patient. It allows the tracking of
a number of domains. Reliability is good among a trained staff.
ii. Audit of palliative care The Royal College of Physicians
(1991) has identified performance indicators that they adapted for review
of the medical record in England.
iii. Performance indicators of quality of dying in nursing home - Based
on an exhaustive review of the literature and input from nursing home
medical directors, Keay and colleagues (1994) have outlined performance
criteria for examining medical care among persons who die in nursing
homes.
iv. Modifications of SUPPORT Instruments (Teno, in preparation) and
Dying Experience at Dartmouth Study (Goodlin, in preparation) - Based
on instruments used in SUPPORT, Lynn, Teno, and Goodlin have created
two chart review instruments to examine the dying experience of patients
who died in the hospital.
II. Examination of
Survival Time
As noted previously, survival
time is one of oldest measures of medical care outcomes. Comparison
of unadjusted mortality rates or survival time can be misleading because
different institutions may have patients with different disease severity
and socio- economic status. Listed below are instruments that one might
consider to adjust for such differences. We have listed only those instruments
which have been independently validated on a new sample.
a. Apache III Prognostic
System (Knaus 1991) - This is the most widely used prognostication
system for patients hospitalized in an ICU. Chart abstraction has been
shown to be reliable. The model estimate (i.e., surviving this hospitalization)
has been independently validated. Instruments and computerized platform
for APACHE III are available from Apache Medical Systems.
b. Simplified Acute Physiology Score II (Le Gall 1993)
A prognostic model that predicts hospital survival for patients
hospitalized in an ICU. The scoring sheet is published in JAMA, 1993,
pages 2960-61.
c. SUPPORT Prognostic Model (Knaus 1996) - One of the
first models to predict survival time among seriously ill adults. This
model is only applicable if institutions choose to utilize the same
strict entrance criteria.
IV. Priorities for
Future Research
a. We need better regression
models that would adjust for confounders in predicting the timing of
discussion and decision making about the use of CPR and life sustaining
treatment. If adequate models were developed, health care institutions
could compare their performances to a best practice or national
standard.
b. From a clinical standpoint, the development of instruments which
could track palliative care management and graphically display the results
over time would provide important feedback to improve and enhance patient
care.
c. Consideration should be given to developing performance standards
(or guidelines) for process variables in the care of the dying. This
work should consider building off the audit system outlined by the Royal
College of Physicians in London (1991).
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Section prepared by Joan
Teno