APPENDIX A: Literature Review Methodology
APPENDIX B: National Hospice Organization’s Sample Contract
APPENDIX C: Medical Guidelines for Determining Prognosis in
Selected Non-Cancer Diseases
APPENDIX D: Wisconsin State Guidelines for Medicare Hospice Care Provision
in the Nursing Home
APPENDIX E: Acknowledgement List
The purpose of the literature review was to update Mor and Allen's 1987 hospice
review (Mor & Allen, 1987) by identifying subsequent completed and ongoing hospice
research, and by documenting research findings relating to the utilization, cost and
quality of hospice care. A focus of the review was the Medicare hospice benefit in the
nursing facility. An extensive search was conducted utilizing online databases and
Internet resources. Additionally, unpublished work was solicited from leading health
services researchers. The complete methodology including search strategies and
subsequent results are detailed below.
Initial online research databases searched for this review included Medline
(medical research), Psychlit (psychological research), Sociofile (sociological research),
Econlit (economic research) and ERIC (reports). First, a search using the key word
"hospice" was employed yielding nearly 3,000 records. This search was refined using
the following set of key words in addition to the key word hospice: Medicare, Medicaid,
cost, utilization, expenditure, quality of care, quality of life, outcome, grief or
bereavement, depression, pain or symptom control, patient or family satisfaction, and.
All abstracts found with these key words were reviewed and articles were selected
based on their relevance to the goals of the current project and the following criteria: (1)
research published after Mor and Allen's 1987 review; (2) research conducted in the
U.S.; (3) analytic methods were employed.
The National Hospice Organization (NHO) also provided us with a 1994
bibliography of all identified literature from a variety of databases. Bibliographies from
databases that were not initially searched were examined. These databases included
Ageline, Cancerlit, Family Resources, CINAHL, Health Periodicals, Religion Index,
Sociological Abstracts and Dissertation Abstracts. Finally, a HealthSTAR search (policy
and administrative issues in health care) was conducted using hospice and economics
cost savings, health expenditures, health care costs, reimbursement mechanisms and
cost-benefit analysis.
In addition to online database searches, Internet searches were performed. First,
searches were conducted in government web sites for relevant reports, publications,
research or demonstration projects. These sites included the Health Care Financing
Administration and the Office of the Inspector General. Second, research funded from
the following agencies were searched using "hospice" as a keyword: National Institute
of Health (NIH), Agency for Health Care Policy and Research (AHCPR), The Robert
Wood Johnson Foundation Last Act Initiative, and the Open Society's Project on Death
in America Campaign. When relevant research projects were found, the principal
investigator was contacted and asked to describe the purpose, current status and
findings of the project if available.
Finally, after reviewing the current abstracts and also the previous references
reported in Mor and Allen's review, a list of 20 leading health services researchers in
hospice care were identified. These researchers were contacted by letter and asked to
provide information about any current research (funded or not funded) that they were
pursuing relating to hospice care.
The results of the online database search are shown below (Table A.1). Because
no program was used to sort the abstracts and identify duplicates, the number of
abstracts identified for each category may be an overestimate. The limited number of
articles identified for inclusion in the literature review was not surprising given the
criterion employed. Indeed, in their final bibliography, Mor and Allen reported only 13%
of their total bibliography contained analytic papers and only 7% were based on
outcomes of hospice care. Additional references (10) were found in the NHO
bibliography and 3 were subsequently used in the review. Similarly, HealthSTAR search
yielded an additional meeting abstract and one article.
Key Word(s)
Quality of Care
TABLE A.1. Search Results Using On-line Databases
Articles Reviewed
Met Criteria
NOTE: Online databases included Medline, Psychlit, Sociofile, Econlit and ERIC. Some "hits"
may be duplicated due to the use of multiple databases.
Internet searches provided varied materials including reports, background
information and funded grants. The numbers of identified grants are shown on Table
A.2 below. Under the Department of Health and Human Services, the Office of the
Inspector General search yielded information on three relevant audits that were
conducted under Operation Restore Trust. These audits and their findings were
included and discussed in the literature review.
TABLE A.2. Results of Internet Searches for Grants
Funding Agency
Met Criteria for
National Institute of Health
Agency for Health Care Policy & Research
The Robert Wood Johnson Foundation Last Act
Open Society's Project on Death in America
Finally, of the 20 health researchers that were contacted by letter, 10 return letters
were received. Of these, 2 researchers gave us additional information to include in the
review on recent research they were conducting.
Attached you will find a sample nursing home contract. Please be aware that this
document is meant to be utilized after your organization has made the decision to
deliver hospice care in nursing homes.
There are currently more than 1.5 million persons living in nursing homes across
the United States. One in four women age 85 or older lives in a nursing home,
compared to one in seven men in the same age group. Of Americans age 65 and older,
43% will spend some time in a nursing home before death.
In the past few years, increasing attention has been focused on establishing
relationships between hospices and nursing facilities. The Omnibus Reconciliation Act
(OBRA) of 1986 first established that hospice care could be provided in a nursing home
under the routine home care level. With the passage of OBRA '89, the financial
disincentives were removed. The regulatory environment improved with OBRA '90,
known as the Nursing Home Reform Act, when nursing homes were required to meet
standards similar in philosophy to hospice.
As these changes have occurred, the National Hospice Organization has received
an increased number of requests for a sample nursing home contract. Medicaid
requires that a contract is in place before hospice services are provided. In response to
the needs of its membership, NHO sought legal assistance in developing a generic
contract. Providers are advised to utilize this tool as a guide and to make modifications
in relation to state laws and their individualized needs under the direction of local legal
Although the pieces have now fallen into place from a financial, regulatory, and
legal standpoint, establishing a mutually beneficial relationship is still difficult.
Procedures need to be agreed upon for the following areas:
Obtaining and recording physician orders
Maintenance of medical records
Scheduling and coordinating hospice visits
Defining role of each hospice team member
Developing and updating a coordinated Plan of Care
Referral of patients
Provision of continuous care and general in-patient care
Notifying hospice of changes in a patient's condition
The above list of issues to be considered in negotiating relationships with nursing
facilities is not all inclusive, but rather a sample of the types of issues to be examined.
The intent of this guide to implementing a nursing facility contract was to focus the
hospice provider on issues of primary concern. Additional important considerations are
your state nursing home regulations and, where applicable, the hospice licensing law.
There are many hospices throughout the United States that have successful
programs in place and are willing to provide technical assistance. It is through the
sharing of experiences that we will be able to refine the integration of hospice services
within this health care setting.
Second Edition
Published by The National Hospice Organization
Copyright 1996, by the National Hospice Organization. All rights reserved.
The National Hospice Organization
1901 North Moore Street, Suite 901
Arlington, VA 22209
Written by
Standards and Accreditation Committee
Medical Guidelines Task Force
Brad Stuart, MD
Carla Alexander, MD
Cheryl Arenella, MD
Stephen Connor, PhD, Medical Guidelines Task Force Chair
Laurel Herbst, MD, American Academy of Hospice and Palliative Medicine
Diane Jones, MSW, Hospice Association of America
Barry Kinzbrunner, MD
Paul Rousseau, MD
True Ryndes, ANP, MPH, Standards and Accreditation Committee Chairperson
Michael Wohlfeiler, MD, JD
Chris Cody, RNC, MSN, Staff Liaison
Susan Buckley, CRNH, MS, Staff Liaison
©Copyright 1996, by the National Hospice Organization. All rights reserved. No portion of this publication
may be duplicated without the written permission of the National Hospice Organization. Printed in the
United States of America. These documents also are available at
Item Number 713008
ISBN 0-931207-50-9
Introduction and Overview............................................................................................. 22
General Guidelines for Determining Prognosis ............................................................. 26
Heart Disease ............................................................................................................... 28
Pulmonary Disease ....................................................................................................... 30
Dementia....................................................................................................................... 32
HIV Disease .................................................................................................................. 34
Liver Disease ................................................................................................................ 37
Renal Disease............................................................................................................... 40
Stroke and Coma .......................................................................................................... 43
Amyotrophic Lateral Sclerosis ....................................................................................... 45
References.................................................................................................................... 49
I. Type, Strength and Consistency of Evidence ..................................................... 63
II. Karnofsky Performance Status Scale ................................................................. 64
III. New York Heart Association Functional Classification ....................................... 65
IV. Functional Assessment Staging (FAST) Scale: Dementia.................................. 66
V. Typical Time Course of Alzheimer’s Disease ........................................................*
VI. Diagnostic Imaging Factors Indicating Poor Prognosis After Stroke................... 68
Worksheets ......................................................................................................................*
* These sections were not included as part of Appendix C.
This document is written to help identify which patients with non-oncologic terminal
illness are likely to have a significantly decreased prognosis if the disease runs its
normal course. These Guidelines may also be helpful in determining patient eligibility
under the Medicare/Medicaid Hospice Benefit by defining a population that may have a
life expectancy of approximately six months.
Increased access to hospice services for patients with diagnoses across the
medical spectrum is also a goal of this effort. Until recently, hospice in the US has been
identified with care of the end-stage cancer patient.1 Dissemination of these Guidelines
to hospice programs and the medical community should facilitate hospice referrals for
patients with heart, lung, liver, Alzheimer's dementia, HIV and other non-cancer
Recent studies support this effort as timely and relevant. Earlier this year,
Christakis and Escarce2 reported that in 1990, less than twenty percent of hospice
referrals in five major states carried a non-cancer diagnosis. Since that time, the
proportion of hospice admissions for diseases other than cancer has risen steadily.
However, because of inherent challenges in predicting prognosis in non-cancer disease,
a large proportion of patients surviving longer than six months are in this category. In
the Christakis and Escarce cohort, for example, hospice patients with dementia had a
median survival of 74 days, and 34.7 percent of these patients survived for longer than
six months. These findings suggest that physicians and hospice programs might benefit
from help in determining which non-cancer patients are likely to have a prognosis of
approximately six months.
These Guidelines are a starting point, both for hospice programs evaluating
patients for admission and recertification, and for critically-needed research on
prognosis in end-stage disease. Pending confirmation and refinement through ongoing
research with hospice patients, they provide a set of working criteria to use in
determining prognosis. The Guidelines do not pretend to predict prognosis exactly in
each case. In fact, even if based directly on clinical research, any set of criteria defines
a range of probabilities for mortality in a specific population. Prediction of prognosis in
individual cases cannot be expected; clinical judgment is always required on the original
assessment and throughout the admission.
As of this writing, research is underway to assess the accuracy of existing
Guidelines, and to amend them based on new findings. For example, one group has
already documented that the previously-published NHO Guidelines3 for Alzheimer's
disease do indeed predict six-month mortality in about 85% of patients who fit previous
Guideline criteria.4 This is an improvement over Christakis and Escarce's findings from
1990 data, where only about 65% of hospice patients with dementia died within six
months. Recent findings also have allowed us to refine the criteria for severity of
dementia past Stage 7 of the FAST criteria.5 These changes have been included in this
The Medical Nature of the Guidelines
These Guidelines are based on medical findings. However, decisions to admit
patients to hospice are often not based on medical factors alone. They are routinely
influenced by nonmedical factors which would generally be reflected in the treatment
plan, e.g. patient decisions to receive strict symptom control rather than life-prolonging
care, or selection of "optimal" rather than "maximal" treatment regimens tempered by
intolerance or refusal of medication due to side-effects.
In addition, it is important to make a distinction between admitting a patient to the
hospice program and certifying a patient for the Medicare Hospice Benefit. Individual
hospice programs may establish admission criteria that reflect the unique characteristics
and values of their communities. This may mean that some patients could be admitted
to hospice care prior to an estimated six months before death. However, care must be
taken to certify patients for the Benefit only when it is reasonable to conclude that their
prognosis is six months or less. In other cases alternative modes of reimbursement,
often provided through community support, can be sought outside the Medicare
Hospice Benefit.
Emphasis should be placed on evaluating the whole person and the entirety of the
illness. It is important to note, for example, that a patient may have multiple medical
problems, none of which individually amount to a terminal diagnosis, but when taken
together indicate a terminal condition. In short, clinical judgment that takes both medical
and nonmedical factors into account is necessary for accurate estimation of prognosis.
Potential Limitations
Several caveats are in order when using these Guidelines for prognostic purposes.
They are a first attempt at extrapolating a large amount of heterogeneous evidence from
many studies to predict survival in non-cancer diseases (see Appendix I). Their
accuracy will need to be validated by further research. These Guidelines should be
applied to individual cases very cautiously, for at least the following reasons:
Many of the studies referenced here indicate an increased likelihood of death,
sometimes within an uncertain time frame. The six month definition of terminal
illness adopted for the Medicare Hospice Benefit has rarely been used as a
specific outcome measure in most of this research. Further studies with larger
populations of hospice patients are needed to determine median survival
accurately with reference to the six month standard.
Clinical judgment must always be applied in each individual case to supplement
these Guidelines. All studies are performed on large enough populations to attain
statistical significance, so that individual differences in disease progression are
averaged and lost to view. An individual patient who may meet Guideline criteria
that were significant in a study of a large cohort might respond in unpredictable
ways and have unexpected outcomes as his or her disease runs its own unique
course. Therefore the Guidelines must be applied to patients not only on
admission, but at intervals throughout the patient's course in hospice.
Many of the studies referenced here were done in institutionalized populations.
They may or may not be generalizable to patients living at home with family
Many studies pool patients at all stages of disease. Studies done with selected
cohorts of end-stage patients might yield different conclusions. For instance, for a
large population of patients with dementia at all stages of severity, antibiotics
may be shown to postpone mortality. However, the same drugs have not been
shown to lengthen survival in the subpopulation with very end-stage dementia.6
Again, further research is needed in the terminal population.
Almost all studies have been done with patients who received standard medical
therapy when they became acutely ill, thus prolonging the course of the illness.
Little recent research has been done to study the natural course of untreated
end-stage disease. Thus, much of the literature may be defining length of life as
inappropriately long for patients who choose a non-curative approach.
The course of most non-cancer disease is inherently difficult to predict. The
natural history of most non-cancer diseases is characterized by periods of
relative stability punctuated by acute downturns, as opposed to the comparatively
relentless, and thus more predictable, downhill course in cancer. This natural
tendency toward stabilization in non-cancer disease may be augmented by
hospice intervention, which may bring about a prolongation of the terminal phase
due to improved patient compliance, symptom control and prevention of
This difficulty in predicting mortality in non-cancer disease is compounded by the
fact that palliation of non-cancer disease is frequently similar, and sometimes
identical, to standard medical treatment. Therefore hospice can and frequently
does coincidentally extend the life of the non-cancer patient in the act of palliating
symptoms. This situation is new to many hospices, who have been trained to
treat cancer pain but to leave treatment of cancer itself to the oncologist. To
palliate cancer symptoms, hospice employs medications and other interventions
which in most cases do not prolong life. Chemotherapy or radiation for palliation
are generally used by hospices only when pain and symptoms can not be
managed by other interventions. On the other hand, hospice frequently uses the
same medications and interventions to palliate non-cancer symptoms that the
primary physician or medical specialist uses for active treatment. For instance,
skillful palliation of end-stage congestive heart failure requires not only morphine
for dyspnea, but also judicious use of diuretics and vasodilators. But these drugs
do more than make the patient comfortable -- it is well established that they also
prolong life significantly.7 Thus good hospice care can stabilize patients with
non-cancer disease, creating a dilemma for the program if the patient survives for
longer than six months without evidence of serious clinical decline.
Fiscal intermediaries and hospice programs alike would benefit from a thorough
awareness of these factors. These Guidelines are just a starting point in decision
making in non-cancer disease. It is clear that they must be supplemented by clinical
judgment at the time of admission. But frequent clinical reassessment, decisions
concerning recertification versus possible discharge from the Medicare/Medicaid
Hospice Benefit, thorough documentation of medical evidence of continued disease
progression and cooperative review of appropriateness of care with intermediaries are
all important ongoing considerations.
Recognition should be given to other systems of prognostication already devised
for use in advanced medical illness.8 However, these Guidelines were developed de
novo for several reasons. First, previous systems were developed for predicting
prognosis in seriously ill hospitalized patients who were all receiving aggressive medical
therapy. This is a different population than those who are generally considered hospice
candidates, although this situation could change. Also, prior prognostic systems require
large amounts of detailed clinical and laboratory data. This quantity and quality of
information is primarily utilized in research studies, and generally unavailable to
providers in the field. Additionally, unlike other systems, these Guidelines were
designed for ease of application by the average hospice program, whose staff may not
have access to the computer hardware, software and programming expertise needed to
use more sophisticated prognostic systems. The medical knowledge and clinical
experience needed to understand and apply these Guidelines should be well within the
existing capabilities of the hospice staff, ideally under the active leadership of a qualified
and enthusiastic Medical Director.
The following parameters may be used to help determine whether a patient is
appropriate for hospice care and/or eligible for the Medicare/Medicaid Hospice Benefit.
These General Guidelines apply to all patients referred to hospice. However, they may
be specifically applied to patients who do not fall under any of the specific diagnostic
categories for which disease-specific Guidelines have been written. An example might
be the elderly debilitated patient whose intake of food and fluid has declined to the point
where weight loss has become significant, although no specific disease predominates in
the clinical picture.
The patient should meet all of the following criteria:
The patient's condition is life limiting, and the patient and/or family have been
informed of this determination.
A. A "life limiting condition" may be due to a specific diagnosis, a combination of
diseases, or there may be no specific diagnosis defined.9
The patient and/or family have elected treatment goals directed toward relief of
symptoms, rather than cure of the underlying disease.
The patient has either of the following:
A. Documented clinical progression of disease, which may include:
1. Progression of the primary disease process as listed in disease-specific
criteria, as documented by serial physician assessment, laboratory,
radiologic or other studies.
2. Multiple Emergency Department visits or inpatient hospitalizations over
the prior six months.10
3. For homebound patients receiving home health services, nursing
assessment may be documented.
4. For patients who do not qualify under 1, 2 or 3, a recent decline in
functional status may be documented.
a. Functional decline should be recent, to distinguish patients who are
terminal from those with reduced baseline functional status due to
chronic illness. Clinical judgment is required for patients with a terminal
condition and impaired status due to a different non-terminal disease,
e.g., a patient chronically paraplegic from spinal cord injury who is
recently diagnosed with cancer.
b. Diminished functional status may be documented by either:
1. Karnofsky Performance Status of less than or equal to 50%,11,12,13
(see Appendix II) or
2. Dependence in at least three of six Activities of Daily Living
"Activities of Daily Living" are:
iii. Feeding23
iv. Transfers
v. Continence of urine and stool
vi. Ability to ambulate independently to bathroom.
B. Documented recent impaired nutritional status related to the terminal process.
1. Unintentional, progressive weight loss of greater than 10% over the prior
six months.24,25,26,27
2. Serum albumin less than 2.5 gm/dl28,29,30 may be a helpful prognostic
indicator, but should not be used in isolation from other factors in I-III
This section is meant to assist in the determination of prognosis for patients with
end-stage heart disease. It is important to remember that with skillful palliation including
judicious use of diuretics and vasodilators, particularly angiotensin-converting enzyme
(ACE) inhibitors, some patients may survive for long periods with extremely severe
symptoms. These drugs definitely promote patient comfort, but they also prolong life.31
On the other hand, some patients with advanced coronary disease may die suddenly
and unexpectedly from acute ventricular arrhythmias.
The likelihood of early mortality is increased in patients who show all of the
following characteristics:
Symptoms of recurrent congestive heart failure (CHF) at rest.
A. These patients are classified as New York Heart Association (NYHA) Class
IV32 (see Appendix III).
B. Ejection fraction of 20% or less is helpful supplemental objective evidence,
but should not be required if not already available.33
Patients should already be optimally treated with diuretics and vasodilators,
preferably angiotensin-converting enzyme (ACE) inhibitors.
A. The patient experiences persistent symptoms of congestive heart failure
despite attempts at maximal medical management with diuretics and
B. "Optimally treated" means that patients who are not on vasodilators have a
medical reason for refusing these drugs, e.g. hypotension or renal disease.
C. Although newer beta blockers with vasodilator activity, e.g. carvedilol, have
recently been shown to decrease morbidity and mortality in chronic CHF,34
they are not included in the definition of "optimal treatment" at this time.
In patients with refractory, optimally treated CHF as defined above, each of the
following factors have been shown to decrease survival further, and thus may
help in educating medical personnel as to the appropriateness of hospice for
cardiac patients.
A. Symptomatic supraventricular or ventricular arrhythmias that are resistant to
antiarrhythmic therapy.
B. History of cardiac arrest and resuscitation in any setting.35
C. History of unexplained syncope.36,37,38
D. Cardiogenic brain embolism, i.e., embolic CVA of cardiac origin.39
E. Concomitant HIV disease.40
Determining prognosis in end-stage lung disease is extremely difficult. There is
marked variability in survival.41 Physician estimates of prognosis vary in accuracy, even
in patients who appear end-stage.42 Even at the time of intubation and mechanical
ventilation for respiratory failure from acute exacerbation of chronic obstructive
pulmonary disease (COPD), six-month survival cannot be predicted with certainty from
simple data easily available to the clinician.43 Far less information than this is available
to most hospice programs at the time of referral.
Patients who fit the following parameters can be expected to have the lowest
survival rates. Although the end stages of various forms of lung disease differ in some
respects, most follow a final common pathway leading to progressive hypoxemia, cor
pulmonale and recurrent infections. Thus, these Guidelines refer to patients with many
forms of advanced pulmonary disease. At the present time, it is uncertain what number
or combination of these factors might predict six-month mortality; clinical judgment is
Severity of chronic lung disease documented by:
A. Disabling dyspnea at rest, poorly or unresponsive to bronchodilators, resulting
in decreased functional activity, e.g., bed-to-chair existence, often
exacerbated by other debilitating symptoms such as fatigue and cough.
B. Forced Expiratory Volume in One Second (FEV1), after bronchodilator, less
than 30% of predicted,44,45,46 is helpful supplemental objective evidence, but
should not be required if not already available.
C. Progressive pulmonary disease.
1. Increasing visits to Emergency Department or hospitalizations for
pulmonary infections and/or respiratory failure.
2. Decrease in FEV1 on serial testing of greater than 40 ml per year47,48,49 is
helpful supplemental objective evidence, but should not be required if not
already available.
Presence of cor pulmonale or right heart failure (RHF).50,51,52
A. These should be due to advanced pulmonary disease, not primary or
secondary to left heart disease or valvulopathy.
B. Cor pulmonale may be documented by:
1. Echocardiography.
2. Electrocardiogram.
3. Chest x-ray.
4. Physical signs of RHF.
Hypoxemia at rest on supplemental oxygen.
A. pO2 less than or equal to 55 mm Hg on supplemental oxygen.
B. Oxygen saturation less than or equal to 88% on supplemental oxygen.
A. pCO2 equal to or greater than 50 mm Hg.
Unintentional progressive weight loss of greater than 10% of body weight over
the preceding six months.53,54
Resting tachycardia greater than 100/minute in a patient with known severe
chronic obstructive pulmonary disease.55,56,57,58
This section is meant to assist in determining whether a patient with end-stage
dementia is appropriate for hospice care and/or eligible for the Medicare/Medicaid
Hospice Benefit. Although dementia shortens life independent of culture or ethnicity,59
prediction of six-month mortality is challenging. Severity of dementia alone correlates
with poor survival in studies of institutionalized60 and outpatients,61 but patients with
very advanced dementia can survive for long periods with meticulous care as long as
they do not develop lethal complications. Death usually occurs, in fact, as a result of
comorbid conditions.62
The term "dementia" refers here to chronic, primary and progressive cognitive
impairment of either the Alzheimer or multi-infarct type. Although most research on
prognosis in dementia is done with Alzheimer's patients, the vascular (multi-infarct)
dementias appear to progress to death more quickly.63,64,65 These guidelines do not
refer to acute, potentially reversible or secondary dementias, i.e., those due to drug
intoxication, cancer, AIDS, major stroke, or heart, renal or liver failure.
Functional Assessment Staging
A. Even severely demented patients may have a prognosis of up to two years.
Survival time depends on variables such as the incidence of comorbidities
and the comprehensiveness of care.
B. The patient should be at or beyond Stage Seven of the Functional
Assessment Staging66 Scale (see Appendix IV). The factors listed below
should be understood explicitly, since many patients do not progress in an
orderly fashion through the substages of Stage 7. Also see Appendix V,
"Typical Time Course of Alzheimer's Disease," for a pictorial representation of
the continuum of dementia.67
C. The patient should show all of the following characteristics:
1. Unable to ambulate without assistance.
This is a critical factor. Recent data indicate that patients who retain the
ability to ambulate independently do not tend to die within six months,
even if all other criteria for advance dementia are present.68
2. Unable to dress without assistance.
3. Unable to bathe properly.
4. Urinary and fecal incontinence.
a. Occasionally or more frequently, over the past weeks.
b. Reported by knowledgeable informant or caregiver.
5. Unable to speak or communicate meaningfully.
a. Ability to speak is limited to approximately a half dozen or fewer
intelligible and different words, in the course of an average day or in
the course of an intensive interview.
Presence of Medical Complications.
A. The presence of medical comorbid conditions of sufficient severity to warrant
medical treatment, documented within the past year, whether or not the
decision was made to treat the condition, decrease survival in advanced
B. Comorbid Conditions associated with dementia:
1. Aspiration pneumonia.
2. Pyelonephritis or other upper urinary tract infection.
3. Septicemia.
4. Decubitus ulcers, multiple, stage 3-4.
5. Fever recurrent after antibiotics
C. Difficulty swallowing food or refusal to eat, sufficiently severe that patient
cannot maintain sufficient fluid and calorie intake to sustain life, with patient or
surrogate refusing tube feedings or parenteral nutrition.
1. Patients who are receiving tube feedings must have documented impaired
nutritional status as indicated by:
a. Unintentional, progressive weight loss of greater than 10% over the
prior six months.71,72,73,74
b. Serum albumin less than 2.5 gm/dl may be a helpful prognostic
indicator, but should not be used by itself.75,76,77
With the introduction of new classes of anti-retroviral therapy such as protease
inhibitors (PI's), and better control of opportunistic infections, the perception of HIV may
be changing from that of inexorably fatal disease to that of chronic illness.78 The ability
to measure the amount of circulating virus (viral load, HIV RNA)79,80 has dramatically
changed both the management of disease81 and the ability to predict survival.
Previously published data using the CD4+ cell count82 alone as a prognostic marker will
not be as helpful in determining appropriateness for hospice care.
With the announcement that viral load could be suppressed to undetectable levels
for at least a year in 90% of treated patients by a combination of AZT, 3TC and
indinavir, a PI,83 a new air of hopefulness exists in AIDS treatment. Although authorities
now discuss the possibility of eradicating HIV from patients, it is far from certain that
new drugs will result in complete reconstitution of the immune system,84 or in recovery
of other organ systems already seriously damaged by HIV. Therefore, at this time these
Guidelines must reflect past literature until newer studies are available.
HIV mortality is influenced by new and changing therapies, practitioners' skill and
experience in management, and individual patient tolerance for treatment. Other factors
contribute to the difficulty of prognosis in this disease. It occurs predominately in the
young, who are both constitutionally better able to withstand a heavy burden of disease,
and less likely to forego intensive therapies, than the more elderly populations typical of
other end-stage illnesses. Because of improved prophylactic regimens, most deaths
from AIDS are now caused by opportunistic infections, persistent wasting, or neoplasm.
It is important to discuss a patient's clinical course with a physician who is
experienced in caring for persons with HIV disease85,86 or with one who is experienced
in Palliative Medicine. As in any end-stage disease, optimum therapy should have been
exhausted or refused by the patient. The course over the previous month may reflect
the patient's prognosis.
Concerning protease inhibitors, unless patients taking these medications fit the
CD4+ and viral load criteria listed below, they may have a prognosis considerably
longer than six months. Thus these drugs may be considered life-prolonging, not
palliative, in the hospice setting. Additionally, patients already enrolled in hospice who
decide to start these medications may lengthen their prognosis considerably. Programs
will have to take these issues into account when deciding whether to cover PI's under
the Medicare/Medicaid Hospice Benefit.
The following factors are correlated with early mortality and therefore may be
helpful when evaluating a patient for terminal care or for coverage by the
Medicare/Medicaid Hospice Benefit:
CD4+ Count
A. Patients whose CD4+ count is below 25 cells/mcL, measured during a period
when patient is relatively free of acute illness, may have a prognosis less than
six months, but should be followed clinically and observed for disease
progression and decline in recent functional status.
B. Patients with CD4+ count above 50 cells/mcL who are followed by an
experienced AIDS practitioner probably have a prognosis longer than six
months unless there is a non-HIV-related co-existing life-threatening disease.
In one study of CD4+ counts and mortality, median survival of the entire
population of patients with CD4+ <50 was 11.9 months.87
Viral Load
A. Patients with a persistent HIV RNA (viral load) of >100,000 copies/ml may
have a prognosis less than six months.
B. Patients with lower viral loads may have a prognosis of less than six months
1. They have elected to forego antiretroviral and prophylactic medication.
2. Their functional status is declining.
3. They are experiencing complications listed in IV below.
Life-threatening complications with median survival:
The following HIV-related opportunistic diseases all are associated with
prognosis less than six months. Note that prognosis may be longer for certain
conditions if patient elects treatment:
A. CNS lymphoma89
2.5 months
B. Progressive multifocal leukoencephalopathy90
4 months
C. Cryptosporidiosis91
5 months
D. Wasting (loss of 33% lean body mass)92
<6 months
E. MAC bacteremia, untreated93
<6 months
F. Visceral Kaposi's sarcoma unresponsive to
6 month mortality 50%.
G. Renal failure, refuses or fails dialysis95,96
<6 months
H. Advanced AIDS dementia complex97
6 months
I. Toxoplasmosis98
6 months
The following factors have been shown to decrease survival significantly and
should be documented if present:
A. Chronic persistent diarrhea for one year, regardless of etiology.99
B. Persistent serum albumin < 2.5 gm/dl.100,101,102
C. Concomitant substance abuse.103
D. Age greater than 50.104,105,106,107
E. Decisions to forego antiretroviral, chemotherapeutic and prophylactic drug
therapy related specifically to HIV disease.
F. Congestive heart failure, symptomatic at rest.108
Prognosis in advanced liver disease has been widely studied to assess readiness
for liver transplantation.109,110 Clinical symptoms and signs and laboratory values
contained within the Child-Turcotte classification111 as modified by Pugh,112 not included
here, have been shown to correlate significantly with early mortality.113,114 Some of
these variables, with the addition of other clinical syndromes associated with mortality,
are shown below.
Although accurate, albeit complex, prognostic indices based on multivariate
analyses have been developed,115 they are still controversial. They are not
recommended here since:
All the required elements may not be available to hospice programs at the time of
The computing power needed to calculate these scores may not be available to
many hospice admissions staff.
Nearly every study on prognosis in advanced liver disease has been done
outside the US, and World Health Organization data reveals that patterns of
death from liver disease, as well as risk factors such as alcoholism and hepatitis
B, can differ widely among countries.116
The following factors have been shown to correlate with poor short-term survival in
advanced cirrhosis of the liver due to alcoholism, hepatitis, or uncertain causes
(cryptogenic). Their effects are additive; i.e. prognosis worsens with the addition of each
one. Clinical judgment is vital. The following factors should be followed and reviewed
over time. Patients should have end-stage cirrhosis; those who are newly
decompensated, i.e. in their first hospitalization, may improve dramatically with
treatment compared to those who are in the terminal phase of a chronic process.117
The patient should not be a candidate for liver transplantation.
Laboratory indicators of severely impaired liver function:
Patients with this degree of impairment have a poor prognosis. The patient
should show both of the following:
A. Prothrombin time prolonged more than 5 sec. over control.
B. Serum albumin < 2.5 gm/dl.
Clinical indicators of end-stage liver disease:
The patient should show at least one of the following:
A. Ascites, refractory to sodium restriction and diuretics, or patient noncompliant.
1. Maximal diuretics generally used: Spironolactone 75-150 mg/day plus
furosemide >40 mg/day.118
a. Spontaneous bacterial peritonitis.119
2. Median survival 30% at one year;120 high mortality even when infection
cured initially if liver disease is severe or accompanied by renal
a. Hepatorenal syndrome.122
3. In patient with cirrhosis and ascites, elevated creatinine and BUN with
oliguria (400 ml/da) and urine sodium concentration <10 mEq/l.
4. Usually occurs during hospitalization; survival generally days to weeks.
B. Hepatic encephalopathy, refractory to protein restriction and lactulose or
neomycin,123 or patient non-compliant.
1. Manifested by: decreased awareness of environment, sleep disturbance,
depression, emotional lability, somnolence, slurred speech,
2. Physical exam may show flapping tremor of asterixis, although this finding
may be absent in later stages.125
3. Stupor and coma are extremely late-stage findings.
a. Recurrent variceal bleeding.126
4. Following initial variceal hemorrhage, one third died in hospital, one third
rebled within six weeks; two thirds survived less than 12 months.127
5. Patient should have rebled despite therapy, or refused further therapy,
which currently includes:128,129
a. Injection sclerotherapy130 or band ligation, if available.131
b. Oral beta blockers.132
c. Transjugular intrahepatic portosystemic shunt (TIPS).133
The following factors have been shown to worsen prognosis and should be
documented if present:
A. Progressive malnutrition134
B. Muscle wasting with reduced strength and endurance.
C. Continued active alcoholism, i.e. > 80 g ethanol per day135,136,137
D. Hepatocellular carcinoma138
E. HBsAg positivity139
This section is meant to assist in determining whether a patient with end-stage
renal disease is appropriate for hospice care and/or eligible for the Medicare/Medicaid
Hospice Benefit. Absent other comorbid conditions, the patient should not be seeking
dialysis or renal transplant. Patients who do refuse dialysis or transplant are generally
appropriate for hospice services if they fit dialysis criteria.140,141 When evaluating
patients with end-stage renal disease (ESRD),142 a nephrology consultation may be
helpful since individual patient variables can influence longevity.143
Hospitalized patients may develop acute renal failure (ARF) following trauma or
major surgery. Short-term survival may be difficult to predict during initial evaluation and
treatment. However, factors listed in III. below may be helpful in evaluating these
acutely-ill patients for hospice admission.144
Chronic renal failure (CRF) can be treated with either hemo- or chronic ambulatory
peritoneal dialysis (CAPD), which prolongs survival indefinitely. If dialysis is
discontinued, the chance of early death is greatly increased. An occasional patient with
residual renal function after dialysis is discontinued may remain alive for a period of
time, but survival beyond six months is highly unlikely.
Care should be taken in assessing patients with nephrotic syndrome. This illness
often follows a protracted course; nephrology consultation can assist with prognosis.
Laboratory criteria for renal failure.
These values may be used to assess patients with renal failure who are not
dialyzed, as well as those who survive more than a week or two after dialysis is
discontinued. Patients with this degree of renal failure can be expected to die
shortly without dialysis. Bearing in mind individual differences in tolerance for
very elevated creatinine levels, critical renal failure is defined (HCFA form #2728)
A. Creatinine clearance of less than 10cc/min (less than 15 cc/min for diabetics)
B. Serum creatinine greater than 8.0 mg/dl (greater than 6.0 mg/dl for diabetics).
1. Creatinine clearance may be estimated by using the following formula,
thus avoiding a 24-hour urine collection:
Ccreat =
(140 - age in yrs.) (body wt. in kg);
(72) (serum creat in mg/dl)
multiply by 0.85 for women.
2. Blood urea nitrogen (BUN) values are not used in the determination of
critical renal failure, since they can be extremely elevated from prerenal
azotemia due to dehydration, hypovolemia or other causes.
Clinical signs and syndromes associated with renal failure.
The following clinical signs are used as criteria for beginning dialysis. For
patients with end-stage renal disease who are not to be dialyzed, the following
may help define hospice appropriateness:
A. Uremia: clinical manifestations of renal failure.
1. Confusion, obtundation
2. Intractable nausea and vomiting
3. Generalized pruritis
4. Restlessness, "restless legs"
B. Oliguria: Urine output less than 400cc/24 hrs.
C. Intractable hyperkalemia: persistent serum potassium >7.0 not responsive to
medical management.
D. Uremic pericarditis.
E. Hepatorenal syndrome.
F. Intractable fluid overload.
In hospitalized patients with ARF, these comorbid conditions predict early
A. Mechanical ventilation.145
B. Malignancy--other organ systems.146,147,148
C. Chronic lung disease.149
D. Advanced cardiac disease.150,151,152,153
E. Advanced liver disease.154
F. Sepsis.155,156,157,158
G. Immunosupression/AIDS.
H. Albumin < 3.5 gm/dl.159
I. Cachexia.160
J. Platelet count < 25,000.161
K. Age > 75.162,163,164,165,166
L. Disseminated intravascular coagulation.167
M. Gastrointestinal bleeding.168
After stroke, patients who do not die during the acute hospitalization tend to
stabilize with supportive care only. Continuous decline in clinical or functional status
over time means that the patient's prognosis is poor.
Conversely, steady improvement in the patient's functional or physiologic status
may indicate that the patient is not terminally ill. Care should be taken to distinguish true
recovery of performance and physiologic function from the improvement in symptoms
and subjective well-being that can accompany hospice intervention.
During the acute phase immediately following a hemorrhagic or ischemic stroke,
any of the following are strong predictors of early mortality:
A. Coma or persistent vegetative state secondary to stroke, beyond three days'
B. In post-anoxic stroke, coma or severe obtundation, accompanied by severe
myoclonus, persisting beyond three days past the anoxic event.176,177,178
C. Comatose patients with any 4 of the following on day 3 of coma had 97%
mortality by two months:179
1. Abnormal brain stem response
2. Absent verbal response
3. Absent withdrawal response to pain
4. Serum creatinine >1.5 mg/dl
5. Age >70
D. Dysphagia severe enough to prevent the patient from receiving food and
fluids necessary to sustain life, in a patient who declines, or is not a candidate
for, artificial nutrition and hydration.
E. If computed tomographic (CT) or magnetic resonance imaging (MRI) scans
are available, certain specific findings may indicate decreased likelihood of
survival, or at least poor prognosis for recovery of function even with vigorous
rehabilitation efforts, which may influence decisions concerning life support or
hospice. Please see Appendix VI for a list of these diagnostic imaging factors.
It should be borne in mind that clinical variables, not imaging studies, are the
primary criteria for hospice referral.
Once the patient has entered the chronic phase, the following clinical factors may
correlate with poor survival in the setting of severe stroke, and should be
documented. The referenced factors have been studied in relation to prognosis in
stroke, whereas others may be found elsewhere in these Guidelines where they
relate to declining patients in general, or to comparable conditions such as
A. Age greater than 70.180,181,182,183
B. Poor functional status, as evidenced by Karnofsky score of <50%. See
Appendix II.
C. Post-stroke dementia, as evidenced by a FAST score of greater than 7. See
Appendix IV.
D. Poor nutritional status, whether on artificial nutrition or not:
1. Unintentional progressive weight loss of greater than 10% over past six
2. Serum albumin less than 2.5 gm/dl, may be a helpful prognostic indicator,
but should not be used by itself.188,189,190
E. Medical complications related to debility and progressive clinical decline. It is
assumed that these patients are in chronic care situations similar to those
with end-stage dementia.191 Although studies are not available to relate these
directly to six-month prognosis in stroke, their presence should be
1. Aspiration pneumonia.
2. Upper urinary tract infection (pyelonephritis).
3. Sepsis.
4. Refractory stage 3-4 decubitus ulcers.
5. Fever recurrent after antibiotics.
Amyotrophic lateral sclerosis (ALS) is a progressive neurologic disease that is fatal
in about three fourths of patients within one to five years after symptom onset,192 with
median survival of 4 years or less,193 although some studies indicate longer survival in
some patients with symptom onset before age 45.194 The cause is unknown in 90% of
cases, and at present there is no effective treatment.195,196 Crude mortality rates from
ALS have risen about 50% in the last fifteen years,197,198 but this appears due to
declining competitive mortality from ischemic heart disease and stroke rather than rising
incidence of ALS.199
Although the disease usually starts with focal involvement, patients become
quadriplegic and unable to speak, swallow and ultimately to breathe.200,201 A small
percentage of patients may survive beyond five years,202 particularly with ventilators and
feeding tubes, although centers specializing in the care of patients with advanced ALS
report that with counseling, very few of them choose assisted ventilation.203
For predicting prognosis in ALS, several characteristics of the disease are
important to remember:
ALS tends to progress in a linear fashion over time. Thus the overall rate of
decline in each patient is fairly constant and predictable, unlike many other noncancer diseases.
However, no single variable deteriorates at a uniform rate in all patients.204
Therefore, multiple clinical parameters are required to judge the progression of
Although ALS usually presents in a localized anatomical area, the location of
initial presentation does not correlate with survival time.205 By the time patients
become end-stage, muscle denervation has become widespread, affecting all
areas of the body, and initial predominance patterns do not persist. Bulbar
presentation, for example, was thought to correlate with relatively poor prognosis,
but more recent studies have shown that bulbar cases present with later age of
onset, which does correlate with more rapid progression.
Progression of disease differs markedly from patient to patient, as much as 60fold in one series.206 Some patients decline rapidly and die quickly; others
progress more slowly. For this reason, the history of the rate of progression in
individual patients is important to obtain to predict prognosis.
In end-stage ALS, two factors are critical in determining prognosis: ability to
breathe, and to a lesser extent ability to swallow. The former can be managed by
artificial ventilation, and the latter by gastrostomy or other artificial feeding,
unless the patient has recurrent aspiration pneumonia.
Numerous ALS rating scales have been developed to help predict ALS prognosis
for use in drug intervention trials.207,208,209,210,211,212 Although the predictive value of
some are excellent, they are meant to grade patients in all stages of the disease. Their
clinical complexity precludes their use by most hospice staffs, and many medical
directors, without special training.213 More importantly, the only factor that is critical in
end-stage ALS is respiratory function. The other variables considered in these rating
systems, e.g. muscle strength, bulbar function other than swallowing, and upper and
lower extremity function, are irrelevant in predicting six-month prognosis.
Examination by a neurologist within three months of assessment for hospice is
advised, both to confirm the diagnosis and to assist with prognosis.
The following factors may define those ALS patients with expected survival of
approximately six months. These patients generally fit one of the following categories
Both rapid progression of ALS and critically impaired ventilatory capacity.
Both rapid progression of ALS and critical nutritional impairment, with a decision
not to receive artificial feeding.
Both rapid progression of ALS and life-threatening complications.
Rapid progression of disease and critically impaired ventilatory capacity.
A. Rapid progression of ALS.
The patient should have developed most of their disability within the past 12
months. Patients with slow progression may survive for longer periods,
although clinical judgment may still indicate they may be within six months of
Examples would include, within the past year:
1. Progressing from independent ambulation to wheelchair- or bed-bound.
2. Progressing from normal to barely intelligible or unintelligible speech.
3. Progressing from normal to blenderized diet.
4. Progressing from independence in most or all Activities of Daily Living
(ADL's) to needing major assist by caretaker in all ADL's.
B. Critically impaired ventilatory capacity.
The patient should have, within the past 12 months, developed extremely
severe breathing disability. Examples include:
1. Vital Capacity (VC) less than 30% of predicted.
2. Significant dyspnea at rest.
3. Requiring supplemental oxygen at rest.
4. Patient declines intubation or tracheostomy and mechanical ventilation.
Note: Patients who are already on assisted ventilation, whether by negativepressure external means (e.g. Cuirass) or positive-pressure through
tracheostomy, may survive for periods considerably longer than six months
unless there is a life-threatening comorbid condition, e.g. recurrent aspiration
Rapid progression of ALS and critical nutritional impairment.
A. Rapid progression of ALS. Please see I.A. above.
B. Critical nutritional impairment.
Most ALS patients develop swallowing difficulties early in the illness, so that
gastrostomy feeding is reasonable.
However, some patients with end-stage or rapidly-advancing ALS may
choose not to undergo artificial feeding.
These patients may have a prognosis of less than six months if their oral
intake of nutrients and fluids is insufficient to sustain life.
Nutritional impairment may be documented by:
1. Continued weight loss.
2. Dehydration or hypovolemia.
Rapid progression of ALS and life-threatening complications.
A. Rapid progression of ALS. Please see I.A. above.
B. Life-threatening complications.
1. Recurrent aspiration pneumonia.
This may occur whether or not the patient is receiving tube feedings.
2. Decubitus ulcers, multiple, Stage 3-4, particularly if infected.
3. Upper urinary tract infection, e.g. pyelonephritis.
4. Sepsis.
5. Fever recurrent after antibiotics.
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Adapted from Jacox A et al, Management of Cancer Pain.. US Department of
Health and Human Services, AHCPR Publication No. 94-0592, March 1994.
These guidelines were constructed whenever possible on the basis of evidence
from the medical literature concerning early mortality in non-cancer diseases. This
evidence may be grouped in the following categories:214
Meta-analysis of multiple, well-designed controlled studies.
At least one well-designed experimental study.
Well-designed, quasi-experimental studies:
A. Nonrandomized controlled.
B. Single group pre/post.
C. Cohort.
D. Time Series.
E. Matched case-controlled.
Well-designed non-experimental studies.
A. Comparative and correlational descriptive and case studies.
Case reports and clinical examples.
Strength and consistency of evidence may then be sorted as follows:
A. There is evidence of Type I or consistent findings from multiple studies of
Types II, III or IV.
B. There is evidence of Types II, III or IV, and findings are generally consistent.
C. There is evidence of Types II, III or IV, but findings are inconsistent.
D. There is little or no evidence, or there is Type V evidence only.
There has been no attempt in these Guidelines to classify each recommendation
individually. In general, most of these Guidelines would be classified as within Group B,
with a number in Groups A and C. With further more targeted research on mortality in
end-stage non-cancer disease, it would be expected that Guidelines would evolve
upward in this classification to Categories A or B.
Normal no complaints; no evidence of
Able to carry on normal activity; minor signs
or symptoms of disease.
Normal activity with effort; some signs or
symptoms of disease.
Cares for self; unable to carry on normal
Unable to work; able to live at home
activity or to do active work.
and care for most personal needs;
varying amount of assistance needed.
Requires occasional assistance, but is able
to care for most of his personal needs.
Requires considerable assistance and
frequent medical care.
Disabled; requires special care and
Unable to care for self; requires
equivalent of institutional or hospital
care; disease may be progressing
Severely disabled; hospital admission is
indicated although death not imminent.
Very sick; hospital admission necessary;
active supportive treatment necessary.
Moribund; fatal processes progressing
Oxford Textbook of Palliative Medicine, Oxford University Press. 1993;109.
Able to carry on normal activity and to
work; no special care needed.
Class I.
Class II.
Class III.
Class IV.
Patients with cardiac disease, but without resulting limitation of physical
activity. Ordinary physical activity does not cause undue fatigue, palpitation,
dyspnea, or anginal pain.
Patients with cardiac disease resulting in slight limitation of physical activity.
They are comfortable at rest. Ordinary physical activity results in fatigue,
palpitation, dyspnea, or anginal pain.
Patients with marked limitation of physical activity. They are comfortable at
rest. Less than ordinary activity causes fatigue, palpitation, dyspnea, or anginal
Patients with cardiac disease resulting in inability to carry on any physical
activity without discomfort. Symptoms of heart failure or of the anginal
syndrome may be present even at rest. If any physical activity is undertaken,
discomfort is increased.
(Check highest consecutive level of disability.)
No difficulty either subjectively or objectively.
Complains of forgetting location of objects. Subjective work difficulties.
Decreased job functioning evident to co-workers. Difficulty in traveling to new
locations. Decreased organizational capacity.*
Decreased ability to perform complex tasks, e.g., planning dinner for guests,
handling personal finances (such as forgetting to pay bills), difficulty marketing,
Requires assistance in choosing proper clothing to wear for the day, season or
occasion, e.g., patient may wear the same clothing repeatedly, unless
A. Improperly putting on clothes without assistance or cueing (e.g., may put
street clothes on over night clothes, or put shoes on wrong feet, or have
difficulty buttoning clothing) occasionally or more frequently over the past
B. Unable to bathe properly (e.g., difficulty adjusting bath-water temperature)
occasionally or more frequently over the past weeks.*
C. Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does
not wipe properly or properly dispose of toilet tissue) occasionally or more
frequently over the past weeks.*
D. Urinary incontinence (occasionally or more frequently over the past weeks).*
E. Fecal incontinence (occasionally or more frequently over the past weeks).*
A. Ability to speak limited to approximately a half a dozen intelligible different
words or fewer, in the course of an average day or in the course of an
intensive interview.
B. Speech ability is limted to the use of a single intelligible word in an average
day or in the course of an intensive interview (the person may repeat the word
over and over).
C. Ambulatory ability is lost (cannot walk without personal assistance).
D. Cannot sit up without assistance (e.g., the individual will fall over if there are
not lateral rests [arms] on the chair).
E. Loss of ability to smile.
F. Loss of ability to hold up head independently.
* Score primarily on the basis of information obtained from acknowledgeable informant
and/or category.
Reisberg, B. Functional assessment staging (FAST). Psychoparamacology Bulletin,
1988; 24:653-659.
For non-traumatic hemorrhagic stroke:
1. Large-volume hemorrhage on CT:
a. Infratentorial: > 20 ml.213
b. Supratentorial: > 50 ml.213, 213
2. Ventricular extension of hemorrhage.213
3. Surface area of involvement of hemorrhage > 30% of cerebrum.213
4. Midline shift > 1.5 cm.213,213
5. Obstructive hydrocephalus in patient who declines, or is not a candidate for,
ventriculoperitoneal shunt.213
For thrombotic/embolic stroke:
Large anterior infarcts with both cortical and subcortical involvement.213
Large bihemispherric infarcts.213,213
Basilar artery occlusion.213,213
Bilateral vertebral artery occlusion.213,213
Tommy G. Thompson
Joe Leean
Division of Health
State of Wisconsin
Department of Health and Social Services
January 19, 1996
Nursing Homes
Judy Fryback, Director
Bureau of Quality Compliance
1 West Wilson Street
P.O. Box 309
Madison, WI 53701-0309
Guidelines for Care Coordination for Hospice Patients Who Reside in Nursing Facilities
Regulatory concerns have resulted about the appropriate application of nursing
home and hospice regulations to nursing home residents who have elected hospice
services. To respnd to these concerns, and to promote compliance with both the
nursing home and hospice requirements, representatives from the Wisconsin Health
Care Association (WHCA), the Wisconsin Association of Homes and Services for the
Aging (WAHSA), the Hospice Organization of Wisconsin (HOW) and the Bureau of
Quality Compliance (BQC) met as a workgroup to assess these concerns and to
develop a protocol to resolve them. The protocol that was developed is attached for
your review.
One of the most significant problems identified was the nursing home regulation
that requires a new Resident Assessment Instrument (RAI) when there are significant
changes in a resident's or patient's condition. The workgroup developed a document
called "MDS/RAP--Change of Condition," to guide care planning and to address the RAI
requirements for hospice residents/ patients residing in nursing homes. This document
is intended to be a tool to facilitiate the provision and coordination of care in a consistent
manner, while meeting the intent of hospice and long term care regulatory
Reprinted with permission of the Hospice Organization of Wisconsin, all rights reserved.
The use of this comprehensive document as a tool in planning services for hospice
patients residing in nursing facilities should facilitate the coordination of care and benefit
patient care.
The Bureau of Quality Compliance, along with the three associations, is planning a
statewide training the implementation of these guidelines in the spring of 1996.
Please share this information with your staff. Questions regarding this information
can be directed to either Barbara Woodford, Nurse Consultant, Provider Regulation
Section at (608) 264-9896; or Richard Cooperrider, Supervisor, Community Based
Provider Program, at (608) 267-7389.
Guidelines For Care Coordination
Hospice Patients Who Reside in Nursing Facilities
This document was jointly produced by representatives of the Wisconsin Health Care
Association (WHCA), the Wisconsin Association of Homes and Services for the Aging
(WAHSA), and the Hospice Organization of Wisconsin (HOW). All rights reserved. No
portion may be reproduced without written permission of these organizations.
October 1995
Introduction and Background ............................................................ 73
Regulatory References ....................................................................... 74
SECTION III. Contract Considerations for Hospices and Nursing
Homes .................................................................................................. 75
SECTION IV. Clinical Protocol Development .......................................................... 84
A. Priority Areas ................................................................................... 84
B. Plan of Care..................................................................................... 88
1. MDS Care Plan Process .......................................................... 89
2. Examples ................................................................................. 94
(a) Exhibit A........................................................................ 94
(b) Exhibit B........................................................................ 95
Guidelines for Inservice/Education Planning ................................... 98
SECTION VI. Conclusion and Acknowledgments................................................. 101
Persons who are eligible to access their hospice entitlement have the right to
receive those services in their primary place of residence. For some individuals, their
place of residence may be a nursing home. In order to protect access to hospice care
for nursing home residents in Wisconsin, a statewide task force was formed in June of
1994. This task force consisted of representatives of the hospice and nursing home
industries across the state.
Initially, representatives from WHCA, WAHSA, and HOW met to discuss problems
arising in the interface between hospice and nursing homes. Most of these problems
result from differences in the application of both nursing home and hospice regulations
to those nursing home residents who have elected hospice services.
A clinical workgroup was appointed to address what many considered the most
pressing problem in the hospice/nursing home interface: anticipated changes in patient
condition which could potentially trigger the need for a new Minimum Data Set (MDS),
as required by nursing home regulations. This workgroup developed a draft MDS/RAP
change of condition document to guide care planning and address MDS regulatory
requirements for nursing home residents who elect hospice services. The draft was
presented to representatives from the Wisconsin Division of Health, Bureau of Quality
Compliance, who were favorably impressed and recommended field testing of the
document. Field testing commenced in the fall of 1994 following distribution of the
document to all Wisconsin hospices and nursing homes that are members of the three
statewide organizations. It concluded six months later. Minor changes recommended as
a result of the field testing were incorporated into Section IV.B. (MDS Care Plan
Concurrent with field testing, this work group continued to meet to address other
clinical issues. Two additional work groups were formed to address other significant
issues impacting coordination of hospice care in the nursing home. One work group was
given the task of developing guidelines to deal with contractual issues; the other work
group dealt with educational issues. These three work groups' efforts comprise the
Clinical Protocols, Contract, and Education sections of the guidelines.
This comprehensive document is not intended to be a "blueprint" for providers, but
rather a tool to facilitate care coordination in a consistent manner, while maintaining
regulatory compliance. Nursing homes and hospices engaging in collaborative
arrangements are encouraged to structure their individual relationships in a manner that
reflects their unique mission, community needs, and patient populations.
The Bureau of Quality Compliance reviewed this document in October of 1995 and
determined that it meets both hospice and nursing home regulations in the State of
Protocols and guidelines outlined in this document were developed with
consideration for existing state and federal regulations. References include:
42 CFR Part 418, Hospice
Health Care Financing Administration (HCFA), State Operations Manual and
Hospice Interpretive Guidelines
Chapter HSS 131, Hospices, Wisconsin Administrative Code
Chapter HSS 132, Nursing Home Rules, Wisconsin Administrative Code
42 CFR Part 483, Medicare and Medicaid; Requirements For Long Term Facilities
The following list of key considerations during hospice/nursing home contract
negotiations is meant to assist providers in effectively coordinating provider services to
the hospice patient receiving routine home care who resides in a nursing home. While
by no means all-inclusive, these factors reflect many provisions found in the hospice
and nursing home regulations and were compiled from comments and guidance
distributed by authoritative state (Bureau of Quality Compliance) and federal (Health
Care Financing Administration) sources.
The information which follows is specifically pertinent to the routine home care
contract. It is not intended to comprehensively address considerations for inpatient and
respite care, which hospices and nursing homes may elect to include as part of the
same contract or as separate contracts. Providers are encouraged to review the
following contract considerations, but since the listing is not exhaustive, are cautioned to
also review their respective regulations, insurance and liability concerns, financial
position and attorney's advice prior to entering into any formal contract.
Administrative Concerns and Core Services Requirements
a. The hospice/nursing home agreement must be in writing.
b. The written agreement must specify that (1) the hospice takes full responsibility
for professional management of the patient's hospice care, and (2) the nursing
home provides room and board.
c. Hospice must provide the same services otherwise offered if the patient was in
a private residence, including necessary medical services and inpatient care
d. Identify a dispute resolution mechanism to be utilized in the event of disputes.
e. Hospice may not discharge a hospice patient at its discretion, even if care
promises to be costly or inconvenient.
f. Statute/regulation prohibits a hospice from discontinuing care due to inability of
the patient to pay for care.
g. References to specific government agencies can often be misleading and
should be omitted from contract language. Refer more generally to "state" (or
"federal") regulations, rather than "HCFA," "BQC," etc.
h. Admission criteria and requirements must be identical for all individuals
regardless of pay source.
i. Specify the exact services, and extent of services, that will be provided
individually by the hospice and nursing home.
j. Specify the exact responsibilities of each provider in the provision, and
coordination, of care and services.
k. Substantially all core services must be routinely provided "directly" by hospice
employees, and must not be delegated. (Interpretation of "directly" is that the
person providing the service for the hospice is a hospice "employee."
"Employee" includes paid staff and volunteers under the jurisdiction of the
hospice (see 42CFR 418.3).
l. Hospice must provide the following core services through its own employees:
• physician services
• nursing services
• medical social services
• counseling services
m. Hospice may not contract with the nursing home to provide core services.
n. The nursing home may provide non-core services, if hospice assumes
management responsibility for these services, and, assures that these services
are performed in accord with hospice policy and the plan of care.
o. Room and board services to be provided by the nursing home include:
• personal care services
• assistance with ADLs
• administration of medications
• social activities
• room cleanliness
• supervision/assistance with DME use and prescribed therapies
p. Hospice must include the patient's primary physician in the care planning
q. Hospice certification and licensure does not require designation of a primary
caregiver, although individual hospices can require this as a prerequisite to
r. Identify the terms and procedure for formal review and renewal of the
hospice/nursing home relationship on a regular basis.
Coordination of Services
a. At the time each hospice patient/resident is admitted to the facility, the nursing
home must have physician orders for the person's immediate care.
b. Both providers must specify who obtains, and who retains, the supply of
emergency medications.
c. All information relevant to the patient's care must be shared and contained in
the medical records compiled by both the hospice and nursing home. (Caution:
The term "relevant" must be interpreted broadly enough to avoid inadvertently
failing to share marginally relevant information.)
d. Except where dictated by state or federal regulations, identify which provider
will retain "originals" and which provider will retain "copies" of pertinent
documents in the medical record.
e. Specify a procedure for the prompt and orderly relay of general information, MD
orders, etc., between the providers.
f. Specify a procedure that clearly outlines the chain of communication between
the hospice and nursing home in the event a crisis or emergency develops.
g. Identify who will be responsible for completing various parts of the MDS
document. (It is, ultimately, the responsibility of the nursing home to make sure
the MDS is completed, signed and dated.)
h. Indicate whether hospice patients will be allowed to use their own medications.
If so, the expiration date and labelling requirements of HSS 132 must be
i. The hospice and nursing home must jointly coordinate, establish, and agree
upon a single plan of care to be used by both providers. This coordinated single
plan of care must be implemented according to accepted professional
standards of practice.
j. The coordinated plan of care must specifically identify the respective care and
services which the nursing home and hospice will provide.
k. Aside from responsibilities that are part of the core requirements, include a
statement that the plan of care must specify who is responsible for carrying out
various patient interventions.
Specify the chain of communication to be followed between the hospice and
nursing home whenever a change of condition occurs and/or changes to the
plan of care are indicated.
m. All changes in the plan of care must be immediately communicated to the other
n. Each provider must be aware of the other's responsibilities in implementing the
plan of care.
o. Hospice must ensure that hospice services are always provided in accordance
with the plan of care, in all settings.
p. Hospice may involve nursing home personnel in administration of prescribed
therapies in the patient's plan of care only to the extent that hospice would
routinely utilize the patient's family/caregiver in implementing the plan of care.
q. Hospice is responsible for making all inpatient care arrangements.
Employment Issues
a. A key consideration for both the hospice and nursing home is the extent to
which services will be directly provided by hospice with its own staff, since
hospice receives the payment.
b. A hospice may use contracted employees for core services only during:
• periods of peak patient load
• extraordinary circumstances
c. Nursing home employees may also be employed by the hospice to serve
hospice patients.
d. For purposes of a hospice, "employee" is defined in 42 CFR 418.3.
e. Essential requirements for nursing home employees who are also employed by
hospice to perform core services include:
• accurate time records
• clear delineation of responsibilities (intent is to avoid allegations of dual
Reimbursement Issues
The following chart briefly summarizes various reimbursement mechanisms for
hospice care provided in a nursing home:
T.19 pays hospice rate
for routine home care
plus room and board at
95% of nursing home's
Medicaid rate. Hospice
reimburses nursing
home in accordance
with contract. (NOTE:
Hospice may contract
with nursing home for
services covered by
hospice (e.g., supplies,
pharmacy, DME, OT,
PT, speech, CNAs).
(Dual Entitlees)
T.18 pays hospice rate
for routine home care.
Patient must either*
T.19 pays hospice at
95% of nursing home's
Medicaid rate. Hospice
reimburses nursing
home in accordance
with contract. (NOTE:
Hospice may contract
with nursing home for
services covered by
hospice (e.g., supplies,
pharmacy, DME, OT,
PT, speech, CNAs).
Elect the Medicare
Hospice Benefit
(Medicare pays
hospice routine home
care, and nursing home
bills patient or private
Private Pay/
Nursing home bills
patient or private
Hospice bills patient or
private insurance.
Elect normal Medicare
(revoke hospice
benefit). Nursing home
bills Medicare. Hospice
may provide service
and bill patient or
private insurance.
* In rare cases, if it can be demonstrated that skilled nursing care as defined by Medicare is needed for
care not related to the terminal illness, Medicare Part A will pay for nursing home care under normal
Part A Medicare and hospice care under the Medicare Hospice Benefit.
Developed by Jan A. Erickson, Director of Legal Services,
Wisconsin Health Care Association; and Mary H. Michal, Shareholder,
Reinhart, Boerner, Van Deuren, Norris & Rieselbach, S.C.
On behalf of the Hospice/Nursing Home Task Force, the following sample contract
provisions have been compiled for review or use by providers when developing the
format of a hospice-nursing home contract. Since it is essential that the contract
process be individualized to best meet the particular circumstances of the contracting
parties, these sample provisions are intended for general reference only.
This document does not purport to be all-inclusive or "model" in nature. It
will likely need to be changed in at least several respects to accurately conform to the
intentions of each party. For example, exact terms used in the "Definitions" section will
probably vary among providers and certain other sections might be more easily
addressed in combination under one general topic heading. In addition, providers may
prefer to include additional provisions and sections which are not included among the
samples in order to provide greater detail and clarity to their agreement. Therefore,
while providers should feel free to review these sample provisions (as well as others)
during preliminary contract negotiations, the format of their actual contract should
always reflect the individuality of their specific relationship.
Definitions (particularized to individual needs and terminology):
Attending Physician
Care Manager
Covered Services
Hospice Care
Hospice Medical Director
Hospice Services
− Routine Home Care
− Inpatient Respite Care
− Continuous Care
− Inpatient Acute Care
Informed Consent
Interdisciplinary Group
Non-covered Services
Nursing Home Medical Director
Patient Care Management
Plan of Care
Residential Hospice Patient
Respite Care
Room and Board Services
Other Pertinent Definitions as
Identified by the Parties
Eligible Residents (criteria):
Medicaid Eligible
Medicare Eligible
Medicaid/Medicare (Dual Entitlees)
Private Insurance or HMO
Private Pay
Other Pertinent Sections As Identified By The Parties
Coordination of Services:
Admission Procedures (general process, written orders, authorizations)
Patient Care Management (decision process, delegation of responsibility)
Continuity of Care (transfers between levels of care, actions requiring patient notice)
Communication Process (detail the process generally and for emergencies)
− notification of MD (change of condition, death, etc.)
− notification of hospice
Interdisciplinary Team Meetings
Quality Assurance Program
Drugs and Pharmaceuticals
Medical Equipment and Medical Supplies
Transportation and Ambulance
Family Services and Bereavement Care
Other Pertinent Sections As Identified By The Parties
Hospice Duties, Responsibilities and Services:
Hospice Services (general coverage under Routine Home Care)
Provision of Core Services
Compliance with Law (including licensure, staff qualifications)
Hospice Patient Care Management
Management of the Terminal Illness: Plan of Care
Medical Orders: Responsibilities of Attending Physician
Medical Order Procedures
Documentation (clarification of respective duties, location of original medical record)
Confidentiality of Medical Record
Orientation and Education
Other Pertinent Sections As Identified By The Parties
Facility Duties, Responsibilities and Services:
Facility Services (generally, room and board, specific services, plan of care,
cooperation with hospice in identified areas, bedhold policy)
Compliance with Law (including licensure, staff qualifications)
Availability of Nursing Home Care (hours of care, adequate services, personnel)
Documentation (clarification of respective duties, location of original medical record)
Facility Staff Privileges: Hospice Medical Director
Access to Documents (medical/business records, federal record retention
requirements for facility, subcontractors)
Orientation and Education
Other Pertinent Sections As Identified By The Parties
Financial Responsibility:
Responsibility of the Hospice
Responsibility of the Facility
− Medicaid Patients
− Medicare Patients
− Medicaid/Medicare Patients
− Private Pay/Insurance Patients
Purchase of Services by the Hospice from the Facility
Other Pertinent Sections As Identified By The Parties
Insurance and Indemnification
Joint Review of Hospice Services (quality, appropriateness)
Compliance with Government Regulations
Relationship Between the Parties
Conflict Resolution Process
Term of the Agreement (length, renewals)
Termination of the Agreement (for cause/without cause, events precipitating,
regulatory implications, resident transfers and single-case continuation agreements,
resident notice timeframes)
Amendments to the Agreement
Notice Requirements (form, method, delivery)
Miscellaneous (including Non-discrimination Policy)
Other Pertinent Sections As Identified By The Parties
Appendices (if desired, may include references to provider policies, clinical protocols
and procedures; see also: "Clinical Protocols" and "Educational Planning" documents
for possible policies and protocols.)
The preceding information and documents were developed and compiled by
Attorney Jan A. Erickson, Director of Legal Services for Wisconsin Health Care
Association, and Attorney Mary H. Michal, a Partner in the law firm of Reinhart, Boener,
van Deuren, Norns & Rieselbach, S.C., for the Wisconsin Hospice Nursing Home Task
Force. These items may not be reproduced without the express written consent of either
one of the authors, Hospice Organization of Wisconsin, or Wisconsin Health Care
Effective coordination of care that assures patient needs as well as regulatory
requirements are met, necessitates careful planning by both the nursing home and the
hospice. The development of policies and protocols that define care coordination issues
is essential to ensure consistent quality.
Priority areas have been identified for consideration in the development of clinical
Admission process
Physician orders
Supplies and Medications
Medical Record Management
Hospice Core Services
Death Event
Quality Assurance
Emergency Care
Admission Process:
Protocols should be developed that clarify the process of admitting a current
nursing home resident to the hospice program, a current hospice patient to the nursing
home, and lastly for the simultaneous admission of a patient that is new to both the
hospice and the nursing home.
Referral of resident made to Hospice
Consult/information provided by Hospice
Agreement obtained to pursue admission to Hospice care
Hospice secures orders from the physician and manages orders from this point
Change of condition MDS and RAP are completed. Hospice and nursing home
begin care planning jointly.
Nursing home applies from HSS 132 waiver.
Referral to nursing home: the hospice may initiate contact with the nursing
home and facilitates communication between the patient/family and the nursing
home representative.
Hospice and the nursing home coordinate securing required admission
paperwork (i.e.: history and physical, TB screening, physician orders, etc.)
Nursing home applies for HSS 132 waiver
Transfer to patient to nursing home: hospice involvement begins on day of
MDS and revision of care plan initiated jointly by nursing home/hospice
Referrals made to hospice and nursing home
Hospice and nursing home coordinate the admission process and required
Nursing home applies for HSS 132 waiver
Transfer of patient to nursing home. Hospice involvement begins on day of
MDS and initiation of joint care plan by hospice and nursing home
Physician Orders:
Hospice is responsible for securing medical orders and assuring they are
consistent with the hospice philosophy.
Standing orders are obtained by the hospice and provided to the nursing home.
These orders are initiated by the hospice according to patient need.
Nursing home standing orders may be utilized (based on contract), provided they
are consistent with the hospice philosophy and specified on the plan of care.
All verbal, phone and written orders must be preauthorized by hospice before
Lab tests or other diagnostics related to terminal illness must be approved by
hospice and specified on the plan of care
Nursing home coordinates the scheduling of routine physician visits (and/or
nurse practitioner visits). Under state and federal law applicable to nursing
homes, a nurse practitioner may be utilized after 30 days of the first 90 days, and
after 60 days thereafter. "Certified Registered Nurse Hospice" (CRNH) does not
qualify as an advanced practice nurse.
Nursing home nurse may accept orders from a hospice nurse as prescribed by
the physician.
Supplies and Medication/Contracted Services:
Supplies and medications related to the management of the terminal illness are the
responsibility of the hospice. The nursing home and hospice shoudl coordinate
obtaining and monitoring the following supplies and services according to the terms of
their contract:
Prescription medications related to the terminal illness (medications supplied by
hospice must meet nursing home pharmacy labeling requirements)
Durable medical equipment (DME), i.e. W/C, walker, bath bench, commode,
oxygen, etc.
Disposable medical supplies related to the terminal illness, as specified in the
plan of care.
Provision of contracted services such as physical therapy, occupational therapy,
speech therapy, dietary, etc., should be specified on the plan of care and clarified
in the contract.
Medical Record Management:
Copies of physician orders and coordinated plan of care should be on medical
records of both organizations. The location of the original orders should be based
on the contract.
Copies of hospice informed consent and current physician certification must be
on nursing home chart.
Original MDS/RAP stays with nursing home record.
The patient's record in the nursing home will be identified as a hospice patient.
If specified in contract, both the hospice and nursing home retain copies of the
other's record following death or discharge of a hospice patient.
All clinical information (orders, data assessments, etc.) obtained by both
providers that is relevant to the hospice patient's care while a resident must be
on both patient's records.
Hospice Core Services:
Core services as defined in the Federal Register includes nursing services,
medical social services, physician services (medical director), and counseling services.
These services are to be provided routinely by the hospice employees.
Nursing services
− Nursing care is a core service of hospice for assessment, intervention, and
− The hospice of prescribed interventions if specified in the plan of care.
Medical Social Services
− Social services is a core service of hospice for assessment, intervention, and
evaluation related to the terminal illness.
− Other social service interventions may be provided collaboratively by hospice
and nursing home social workers based on the plan of care.
Counseling Services
− Counseling is a core service of hospice for assessment, intervention, and
evaluation related to the terminal illness (type of counseling is defined by
individual hospice).
− Additional counseling interventions may be provided collaboratively by the
hospice and nursing home staff based on the plan of care.
Physician Services
− Physician Services is a core service of hospice for assessment and
− Physician participation may be provided by the medical director, the attending
physician, a consulting physician, or their designees.
Other (non-core) services
− CNA/HHA services should be provided collaboratively by the hospice and
nursing home based on patient need and specified in the plan of care (clarify
in contract).
− Volunteer services are to be coordinated by the hospice but may be provided
collaboratively by the hospice and nursing home as specified in the plan of
care (clarify volunteer role in contract, especially related to hands-on care).
Death Event:
Protocols should be established that define mutual responsibilities at the time of
The hospice must be notified.
Review state and facility guidelines regarding coroner involvement, and follow
protocol specified in contract for notification.
Nursing home and hospice coordinate notification of physician for release of
body when heart rate and respirations have ceased.
Medication disposal.
Quality Assurance:
The nursing home and hospice are required to implement quality assurance
activities per respective regulations.
A collaborative approach to problem solving and outcome monitoring is
encouraged for inter-related issues.
Emergency Care:
Emergency care is defined as unexpected and may be related or unrelated to the
terminal illness.
Care should be consistent with the patient's stated wishes in the advance
directive, and the physician's order with regard to code status.
Nursing home staff provide immediate care in conjunction with facility policy
and/or based on plan of care.
Nursing home staff to call hospice immediately for change of condition and
further assessment and revision of plan of care.
The nursing home and hospice must coordinate, establish, and agree upon one
plan of care for both providers which reflects the hospice philosophy, and is based on
the inidividual's needs and unique living situation in the nursing home. Each nursing
home and hospice should develop policies and protocols to accomplish the MDS/RAP
care plan process.
General Framework for Decision-Making:
Nursing homes are required to complete a minimum data set (MDS) for residents
upon admission to the nursing facility. The MDS is to be reviewed and updated quarterly
and annually. In addition, a new MDS is to be generated upon a change of patient
condition. There are a series of criteria which, when present in a patient in various
combinations or alone, can trigger the need to generate a new MDS.
Recommendation #1:
The task force recognized the importance of the initial MDS, as well as the
quarterly and annual reviews of the MDS, and strongly encouraged that this
information be shared, if not jointly developed, by the hospice and nursing
home. It is essential that the hospice core team and the nursing home staff
both device patient care decisions from the same core set of patient data.
The task force reviewed the fact that many of the patient-change criteria that can
trigger the need for generation of a new MDS for a terminally ill or dying patient are,
in fact, changes that are a natural, expected outcome of the progression of a
terminal illness and/or the dying process. In these situations, the patient care
benefits of generating a new MDS are minimal at best, and are far outweighed by
the intrusion to the patient that the process of developing a new MDS entails. To
address this fact, the task force developed the following statement to govern the
decision-making process relating to a change-of-condition MDS.
Recommendation #2:
When a patient changes from a maintenance/curative course of care to
hospice palliative, the initial change-of-condition minimum data set (MDS) is
the final change of condition are anticipated and documented as part of the
progression of the terminal illness and/or dying process. Quarterly and annual
reviews are still required.
Illustrated as a process, this statement would look as follows:
Change in Patient Condition (after hospice election)
Nursing home reports change to hospice and initiates a RAP review
jointly with hospice staff
The hospice and nursing home staffs make a two-fold determination:
(a) is the change in condition related to the progression of the
terminal illness?, and (b) was the change already anticipated and
documented on the MDS?
If "YES" to both questions:
If "NO" to one or both questions:
No new MDS generated;
hospice and nursing home staff
address change through plan of
New MDS must be generated by
the nursing home staff and/or
hospice and shared by the two
It was the consensus of the task force that revisions could be made in a provider's
approach to the MDS process that would protect quality of care for patients by forcing a
review of the patient condition against the changes expected and documented as part of
the progression of the terminal illness and/or dying process, without triggering in a rote
manner an intrusive MDS that, in many instances, is of little value in the care of the
terminally ill patient electing hospice.
Patient Change of Condition:
The task force reviewed, in the context of the hospice philosophy and experience,
various elements of the nursing home MDS and discussed how each one relates to the
progression of the terminal illness and/or dying process. Elements subject to a change
in condition were divided into three categories, detailed below. Guidelines to govern the
decision-making process for determination of whether a new MDS is to be generated
are outlined in the following paragraphs.
Potential expected outcomes of the
progression of the terminal illness and/or
dying process
Problem Areas
Use of psychotropic drugs
Pressure ulcers
Dental care
Urinary incontinence (including catheter)
Behavior Problems
Falls (patient at risk for)
Cognitive loss/dementia
Expected outcome of the progression of
terminal illness and/or dying process
Deydration and fluid maintenance
Psychosocial changes
Activities of daily living (ADL)
Mood states
Nutritional status
Visual function
Physical restraints
Feeding tubes
Potential, Expected Outcomes:
Certain changes in patient condition are potential, expected outcomes of the
progression of the terminal illness and/or dying process. That is, while they may not be
present in every terminally ill or dying patient, these changes are not unexpected and
are routinely addressed by hospice personnel in the regular course of care. The fact
that one of these changes should not, in the opinion of the task force, trigger a change
of condition MDS provided that the change is related to the terminal illness and/or dying
process, is anticipated and is documented. The value of the information generated
through a change of condition MDS is of very limited value in reshaping care provided to
the terminally ill or dying patient.
At the time the change in condition presents in the hospice patient residing in the
nursing home, a determination should be made as to whether the change is related to
the terminal illness or dying process, and whether it has been documented. If so, then a
new MDS would not be triggered but, rather, the change of condition would be
addressed by the hospice interdisciplinary team through the plan of care.
In evaluating the change of condition, the elements of the change as set out in
Appendix F of the HCFA Nursing Home Manual should be reviewed by the nursing
home staff with the hospice staff. It was understood by the task force that the hospice
staff will not have working familiarity with the Manual or its criteria; this process will
necessarily involve the expertise of the nursing home staff and underscores the
importance of the review being a joint effort. The following grid provides sample
statements that include the minimum elements to be reviewed under each RAP problem
area listed. Additional elements for review may be included based on an assessment of
individual patient circumstances.
RAP Problem Area
Elements of Review
Assess medication, psychosocial state and sensory loss.
Use of psychotropic drugs
Assess medications (drug review) and side effects of
medication. Adjuvant drug therapy will be utilized to provide
palliative symptom management. The risk-benefit ratio
evaluation regarding drug initiation and continued use,
including use outside the guidelines, will be assessed by the
hospice IDT/IDG and nursing home staff and documented
on the clinical record by the nursing home staff.
Pressure ulcers
Assess pressure ulcer versus stasis, review skin integrity.
Dental care
Dental care to increase comfort may be undertaken;
preventive dental care not an unexpected part of the plan of
Urinary incontinence (including
Reduced output is a given in the progression of the terminal
illness and dying process. Assess UTI, fecal impaction,
CUA, diabetes, medication.
Behavior problems
Assess volatility of mood, medications, and cognitive status.
Falls (patient at risk for)
Safety issues can be anticipated because of physical
deterioration with a terminal illness and associated adjuvant
drug therapy. Assess medications, appliances, and
Cognitive loss/dementia
Assess functional limitations, sensory impairment,
medication involvement factors, and failure to thrive.
Assess components of communication, including strengths
and weaknesses, and medication.
Expected Outcomes:
Certain changes in patient condition are not only expected but are a given
outcome with a high probability of occurring as part of the progression of the terminal
illness and/or dying process. There are no identifiable benefits of triggering a change-ofcondition MDS on these criteria, provided that the hospice and nursing home staffs (1)
have jointly reviewed the criteria and determined that the change of condition is linked
to the terminal illness and/or dying process, and (2) this review and determination has
been documented in the clinical records.
Seven of the RAP problem areas are believed by the task force to be given
outcomes of the progression of the terminal illness and/or dying process. The task force
discussed each area and the following sample statements were developed to address
the respective RAP problem areas listed.
Dehydration and fluid maintenance - Changes in hydration status and fluid
balance will occur as part of the progression of the terminal illness and/or dying
process; so long as the change noted in the patient is related to that progression, the
benefits of generating a change- of-condition MDS are minimal in terms of patient care
and do not outweigh the intrusion of conducting the MDS.
Psychosocial changes - Changes in lifestyle and interactions will occur as part of
the progression of the terminal illness and/or dying process.
Activities of daily living (ADL) - The hospice patient residing in the nursing home
will become progressively more dependent on his or her activities of daily living as part
of the progression of the terminal illness and/or dying process.
Mood states - The person experiencing a terminal illness, from diagnosis to death,
is anticipated to have emotional fluctuations.
Activities - A decrease in or non-involvement in activities is an expected outcome
of the progression of the terminal illness and/or dying process.
Nutritional status - Declining nutritional status with progressive weight loss is
expected in a terminal illness.
Visual function - A decrease in visual function is anticipated with the dying
Special Circumstances:
Changes in patient condition which present the potential need for feeding tubes or
physical restraints warrant special consideration in the judgment of the task force. Both
can be classified as potential expected outcomes of the progression of the terminal
illness and/or dying process; yet they are of such a nature as to merit different elements
of review.
Physical restraints - The least restrictive use of physical restraints only is to be
applied to enable the resident to maintain his or her highest level of functioning. This is
consistent with the guidelines set forth in the HCFA Nursing Home Manual, Appendix F.
Feeding tubes - The hospice will discuss the use of feeding tubes with the
patient/family as the terminal illness progresses and initiate enteral/perenteral feeding at
patient/family request as consistent with the philosophy of the individual hospice.
Provided that the need for use of physical restraints or feeding tubes is driven by
the progression of the terminal illness and/or dying process, it is the belief of the task
force that these changes should not alone trigger a change-of-condition MDS.
Exhibit A:
Subject: Nursing Home Setting
Plan of Care
Hospice and nursing home will establish one individualized Plan of Care for
the hospice patient/family in the Nursing Home Setting.
Purpose: To plan for quality hospice care.
Special Instructions:
Upon admission to hospice, the initial Plan of Care will be developed by hospice
and charted.
Nursing home resident to hospice:
Hospice will do assessment and gather information from existing Plan of Care
and nursing home staff. Hospice and nursing home will jointly establish the Plan
of Care. Nursing home staff will initiate change-of-condition MDS/RAP as care
changes focus from curative/maintenance to palliative.
Hospice patient to nursing home:
Hospice/nursing home will develop a Plan of Care. Nursing home will initiate
change-of-care focus MDS/RAP and gather information from hospice.
At initial interdisciplinary team conference after nursing home admission, hospice
will address the RAP problem areas and document anticipated potential patient
outcomes based on terminal disease progression and dying process on form NH
021. A copy will be placed on nursing home chart.
Hospice will attend 14-day MDS/RAP review after notification by nursing home.
At interdisciplinary team meeting following MDS/RAP review, the triggered RAP
areas will be addressed by hospice interdisciplinary/nursing home team meeting
with problems opened or rationale for not opening documented on form NH 021
with copy on nursing home chart.
When a new problem is opened, hospice will document on interdisciplinary team
minutes form if anticipated and related to terminal illness or if unrelated to
terminal illness and provide a copy for nursing home chart.
Hospice will participate in nursing home quarterly review of MDS and Care Plan.
Hospice Executive Director
Nursing Home CEO
* Example reproduced with permission of Hospice of Portage County.
Exhibit B:
Care Plan Process
Purpose: To delineate responsibility for development of one plan of care in order to
meet federal regulations of both nursing home and hospice.
Hospice patient residing at the nursing home will have one plan of care
developed jointly by both staffs.
Three Different Categories of Patients
1. Nursing home does initial nursing plan of care within 24 hours.
2. Hospice-assessing RN writes on nursing home initial plan of care and
brings copy back to hospice.
3. If hospice social worker has plan of care completed, assessing hospice
RN brings copy of plan of care to nursing home to be filed with initial plan
of care.
4. Proceed with MDS on Tuesday and care planning meetings on Thursday.
Nursing home resident care coordinator to coordinate time with hospice
patient care coordinator.
5. Hospice social worker to complete MDS form and patient care coordinator
to bring to MDS meeting.
1. Hospice-assessing RN to review nursing home plan of care; make
changes on nursing home plan of care and bring copy back to hospice.
2. Proceed with MDS on Tuesday and care planning meetings on Thursday.
Nursing home resident care coordinator to coordinate time with hospice
3. Hospice social worker to coordinate MDS with nursing home social worker
and patient care coordinator to bring to MDS meeting.
1. Hospice to provide a copy of plan of care and assessments.
2. Nursing home to use hospice plan of care.
3. Hospice social worker to do MDS form and patient care coordinator to
bring to MDS meeting.
4. Proceed with MDS on Tuesday and care planning meetings on Thursday.
Nursing home resident care coordinator to coordinate time with hospice
patient care coordinator.
A. MDS to be done on Tuesday - hospice RN and patient care coordinator;
nursing home resident care coordinator and RN to attend.
B. Hospice social worker will contribute to MDS meeting with written form.
C. Care planning meeting will be on Thursday. Family, hospice SW, RN, patient
care coordinator and nursing home RN, SW and resident care coordinator will
D. NH - SW to invite family to meeting.
E. NH - RCC to contact hospice patient care coordinator to coordinate time for
F. MDS and care planning meetings will be done every three months.
Changes will be made on plan of care to reflect appropriate hospice care.
Changes will be entered into computerized plan of care and one plan of
care will be filed into both charts.
Nursing home will attend IDG meetings at hospice offices approximately
one month after the care planning at nursing home.
Patient care coordinator to coordinate and inform nursing home for
Plans of care which are updated every two weeks at IDG meetings will be
Xeroxed and brought to nursing home.
All telephone calls to patient and families will be documented and copies
provided to nursing home.
* Example reproduced with permission of Grancare Nursing Center of Green Bay.
Clear communication of the basic components of the contract, the policies and
protocols that guide care coordination, and the key regulations that govern both
providers is essential for a successful nursing home/hospice partnership. Achieving
quality outcomes for patients and their families should be the focus of all staff efforts.
Assuring effective participation by all levels of staff requires careful planning of the
initial orientation following the establishment of a contract, as well as ongoing
educational efforts aimed at improving efficiencies and understanding of experienced
and new staff.
Suggested content for these educational efforts are separated into "Initial
Orientation" and "Ongoing Education."
Initial Orientation
Introducing the hospice concept to nursing home staff may be most effectively
accomplished by using an interdisciplinary approach. Representation from each of the
core disciplines is ideal to establish trusting relationships and encourage professional
interaction. Recommendations for inclusion in the initial orientation process are listed
*Note: It may be useful to group the topic areas according to individual roles of
Nursing Home staff (i.e., meeting with business office and clerical staff separately from
direct patient care staff to allow for questions and discussion specific to the expertise of
the group.)
Discussion of hospice concept and philosophy, including reference to patient's
Informed consent and corresponding expectations/accountabilities.
Services available - delineation of benefits.
Introduction of core team members/roles.
Terminology - definition of terms as specified in the contract.
How/when to notify hospice.
On call availability
Discussion of mutual roles and responsibilities as outlined in the contract
Communication and collaboration relating to care planning, ongoing patient
needs, family support, record maintenance.
Symptom management practices common for hospice patients.
Securing and processing of physician orders (including utilization of standing
orders, if applicable).
Reimbursement scenarios.
Bereavement services available.
Location of resource materials such as a hospice manual with accompanying
quick references.
DME, disposable supplies, oxygen, and ancillary services to be supplied by the
Provision of pharmacy services.
Clarifying the role of the hospice team in the nursing home needs to be balanced
by a corresponding effort to educate hospice staff on the regulations and protocols of
the nursing home. Information to be included in this effort might include the following:
Tour of the facility, with introductions of key personnel, location of records,
security system operation, and any information specific to the physical layout and
daily routine.
Discussion of Resident Rights.
Life Safety Code, including fire/emergency procedures, exits, etc.
Key terminology - definition of terms, including terms specified in the contract.
Comprehensive assessment process and requirements.
Care planning process, including conferences, family involvement, etc.
Record keeping practices.
Infection control issues, especially including biohazard waste disposal, location of
PPE and blood spill clean-up kit, etc.
Chemical/Physical restraints.
Medication management, including regulations governing use of psychotropics,
"unnecessary medications", self-medication, etc.
Patient levels of care and reimbursement scenarios.
Pertinent facility policies (i.e., CPR, hydration, RN coverage, including any
policies that explore ethical issues).
Ongoing Education:
Many hospices provide periodic updates for their contracted nursing homes to
review practical issues related to mutual roles and responsibilities. This provides an
opportunity for dialogue, problem solving, feedback, and recognition of the cooperative
relationships and the impact this collaboration has on quality care for patients.
Suggested topics to include in these periodic updates:
Inservices on pain control and other symptom management protocols commonly
used for hospice patients.
Inservices on loss, grief and bereavement care.
Quality assurance/improvement study results and recommendations.
Practical issues related to communication with physicians, management of
orders, etc.
Care plan coordination process.
Volunteer involvement and utilization.
Review and discuss mutual roles and responsibilities as appropriate.
Some hospices hold regular conferences in the nursing home on a prearranged
schedule (weekly to monthly) to communicate on patient related issues. Others conduct
occasional IDG meetings in the nursing home and encourage nursing home staff
These suggestions, as well as the guidelines for initial orientation, are not intended
to be all-inclusive. Creative approaches that foster improved understanding and
communication between the nursing home and hospice providers are encouraged. The
use of various "mediums" is helpful to have available in the nursing home for staff who
are unable to attend scheduled inservices. These might include audio/video tapes, selflearning modules, quick reference materials, and a manual containing pertinent hospice
The Wisconsin Health Care Association, Wisconsin Association of Homes and
Services for the Aging, and the Hospice Organization of Wisconsin have undertaken
this statewide joint venture for the purpose of protecting access to quality hospice care
for eligible nursing home residents.
Through the combined efforts of the initial task force and the associated work
groups, the intended outcome has been to develop guidelines and protocols for nursing
homes and hospices that are:
− flexible enough to meet individual patient needs;
− predictable enough to ensure quality of care; and
− consistent with the requirements that govern patient care as set forth in HSS
131, HSS 132, and federal regulations for hospices and nursing homes.
The measure of success for this collective effort is the question of access. It is
hoped that access to hospice care for nursing home residents may be protected and
expanded through diligent efforts to maintain clear communication while striving to meet
the unique needs of patients and their families.
WHCA, WAHSA, and HOW gratefully acknowledge the contributions of the
numerous individuals who have participated in this process and the support of their
organizations. The shared commitment of the statewide nursing home and hospice
industries has set the tone for continued success in this collaborative process.
Hospice of Metro Denver
Denver, CO
San Diego Hospice
San Diego, CA
Hospice of North Central Florida
Gainesville, FL
Hospice Association of Western NY
Cheektowaga, NY
VITAS Healthcare Corporation
Miami, FL
Hospice of the Florida Suncoast
Largo, FL
Parker Jewish Institute for Health Care and
New Hyde Park, NY
Frankfort Community Care Home
Southfield, MI
Hospice of Palm Beach County
West Palm Bech, FL
Hospice of the North Shore
Evanston, IL
Hospice of the Grand Valley
Grand Function, CO
Hospice of the Blue Grass
Lexington, KY
Cabrini Center for Nursing and Rehabilitation
New York, NY
Jennings Hall
Garfield Heights, OH
Laguna Honda Hospital and Rehabilitation
San Francisco, CA
Terence Cardinal Cooke Health Center
New York, NY
Menorah Park Center for Aging
Cleveland, OH
Jewish Home for the Aged
San Francisco, CA
South Dakota Department of Health
Pierre, SD
Colorado Department of Public Health and
Denver, CO
National Hospice Organization
Washington, DC
American Association of Homes and Services for
the Aging
Washington, DC
Robert Wood Johnson Foundation
Princeton, NJ
Wisconsin Department of Health and Family
Madison, WI
Clara Baldwin Stocker Home and Convalescent
West Covina, CA
Bethany Medical Center
Kansas City, KS
Catholic Care Center
Wichita, KS
Montefiore Home
Beachwood, OH
Oklahoma State Department of Health
Oklahoma City, OK
Agency for Health Care Health Facilities
Tallahassee, FL
Genesis ElderCare Rehabilitation
Tampa, FL
Hospice Association of America
Washington, DC
American Health Care Association
Washington, DC
HCFA/Center for Medicaid and State Operations
Baltimore, MD
New Jersey Department of Health and Senior
Trenton, NJ
To obtain a printed copy of this report, send the full report title and your mailing
information to:
U.S. Department of Health and Human Services
Office of Disability, Aging and Long-Term Care Policy
Room 424E, H.H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
FAX: 202-401-7733
Email: [email protected]
Office of Disability, Aging and Long-Term Care Policy (DALTCP) Home
Assistant Secretary for Planning and Evaluation (ASPE) Home
U.S. Department of Health and Human Services Home
Reports Available
The goal of ASPE's Medicare Hospice Benefit study was to provide general information
on the role of the Medicare hospice benefit and more specific information about how
end of life care is provided to institutionalized beneficiaries. Six reports wereproduced
from this study:
Synthesis and Analysis of Medicare’s Hospice Benefit: Executive Summary and
Recommendations (report 1) briefly summarizes the methods used for each report and
the findings and recommendations that emerged from each of the following reports
under this study.
Important Questions for Hospice in the Next Century (report 2) synthesizes the
literature related to the Medicare hospice benefit and summarizes discussions with key
informants on the use of hospice in nursing homes.
Executive Summary
Medicare’s Hospice Benefit: Use and Expenditures, 1996 Cohort (report 3)
analyzes Medicare utilization and payments for hospice users in 1996.
Use of Medicare’s Hospice Benefit by Nursing Facility Residents (report 4)
examines differences in hospice utilization and expenditures as a function of when
nursing facility residents started using hospice services (i.e., before or during a nursing
home stay).
Outcomes and Utilization for Hospice and Non-Hospice Nursing Facility
Decedents (report 5) compares pain management and types of services provided to
dying nursing home residents receiving hospice compared to other dying residents who
did not receive hospice.
Hospice Benefits and Utilization in the Large Employer Market (report 6) reports on
how hospice services are provided by 52 large employers and used by their employees,
and identifies alternative approaches to designing and administering hospice benefits.
Executive Summary