Hospice: Comprehensive Care at the End of Life

24 (2006) 181–204

Hospice: Comprehensive Care at the End

of Life

Perry G. Fine, MDa,b,T, Malene Davis, RN, MBAb,c

aPain Research Center, School of Medicine, University of Utah, Suite 200, 615 Arapeen Drive,

Salt Lake City, UT 84108, USAbNational Hospice and Palliative Care Organization, Alexandria, VA 22314, USA

cHospice Care, PO Box 760, Arthurdale, WV 26520, USA

The roots of hospice can be traced to early Christendom as places of respite for

weary travelers. These refuges spread through the Byzantine and Greek cultures

and later the Roman Empire, where the Latin term hospitium was adopted, and

its derivation continues today. Throughout the Middle Ages and during the

Crusades, hospices proliferated and expanded their role to provide care for the

sick and dying but then virtually disappeared during the Reformation. Then, in

nineteenth-century century Ireland and France, hospices were established spe-

cifically to provide terminal care. In the mid-twentieth century, Dame Cicely

Saunders recognized the need to provide a haven for patients dying of cancer,

where there would be the focus of around-the-clock symptom control in an

ambiance of caring. Through her work at St. Christopher’s Hospice on the

outskirts of London, the modern era of hospice was born [1].

Modern era of hospice in the United States

The concept of hospice migrated to the United States in the 1970s, beginning

with small grassroots programs and demonstration projects, followed by a rapid

proliferation in the 1980s, largely as a result of legislation that created a defined

Anesthesiology Clin N Am

0889-8537/06/$ – see front matter D 2006 Elsevier Inc. All rights reserved.

doi:10.1016/j.atc.2005.12.004 anesthesiology.theclinics.com

T Corresponding author. Pain Research Center, School of Medicine, University of Utah, Suite 200,

615 Arapeen Drive, Salt Lake City, UT 84108.

E-mail address: [email protected] (P.G. Fine).

http:\\www.nhpco.org

http:\\www.cms.hhs.gov\providers\enrollment\providers\hospice.asp

fine & davis182

Medicare Hospice Benefit (MHB). The past decade has seen a continued mod-

ernization and rapid expansion of hospice services, mostly in the home en-

vironment, concurrent with the growing acceptance of palliative medicine as a

credible and much-needed specialty and domain of the health care continuum to

improve end-of-life care. During this time, hospice has broadened its scope, from

a service dedicated almost entirely to cancer patients to the care of all patients

who have life-limiting illnesses, such as end-stage cardiac or pulmonary disease

and advanced dementia (eg, Alzheimer disease), to name a few.

The essential philosophy of hospice care focuses on comfort, dignity, and

personal growth at life’s end. This focus encompasses biomedical, psychosocial,

and spiritual aspects of the dying experience, emphasizing quality of life and

healing or strengthening interpersonal relationships, rather than prolongation of

the dying process at any and all costs. To reach these goals requires expertise in

pain and symptom management, as well as intra- and interpersonal dynamics, at

this unique time in the human life cycle. Additionally, hospice care supports the

well being of those (usually family members) who are in primary care-giving

roles and provides bereavement care for survivors.

Modern hospice care is a team effort, in which the typical hospice inter-

disciplinary team consists of medical providers (physician, nurse, and nursing

assistant), psychosocial care providers (social worker), spiritual care providers

(chaplain), and other supportive care professionals, as needed (nutritionist,

physical therapist, pharmacist, speech therapist, and other specialists). Hospice

programs are managed by individuals with a diversity of backgrounds, includ-

ing business, nursing, social work, and theology. Notwithstanding their primary

credentials, increasingly sophisticated management and information technology

skills are required to meet the demands of the current clinical, regulatory, and

fiscal environment. A hallmark of hospice care, and a requirement under the

provisions of the Medicare Hospice Benefit, is the involvement of volunteers

who provide visitation, companionship, housekeeping help, errands, and many

other types of needed assistance.

In the United States, most hospice care is provided in the home, but it can be

rendered in any environment, including inpatient settings, long-term care fa-

cilities (nursing homes and assisted living centers) or anywhere else the patient

resides. There are currently over 3000 hospice programs operating within the

United States. Most are small programs with a census of less than 30 patients,

with budgets bolstered by charitable giving to provide needed services. Currently,

there is a trend toward growth and a consolidation to form larger multisite pro-

grams, creating operating efficiencies through economies of scale and integra-

tive information systems. This increased efficiency allows more effective use of

limited resources to reach far more patients from all social spheres, with the

ability to provide more advanced palliative services for symptom control and

optimization of quality of life. As a result, we are beginning to witness a blending

of the humanistic family and patient-centered philosophy that has characterized

traditional hospice with the myriad innovations that have been derived through

scientific advances of modern medicine. Significant improvements in quality of

hospice: comprehensive care at the end of life 183

life at the end of life, often with reductions in health care expenditures, can now

be realized by patients who elect modern-day hospice care [2–4].

Hospice as a system of care and community resource

Hospice is the comprehensive and coordinated palliative care for patients

who have predictably limited life expectancy, provided both at home and across all

institutional settings. As a community asset, hospice programs serve as their

communities’ leaders in issues related to end-of-life care. High-functioning pro-

grams operate broadly and holistically as social and community service agencies

and educational resources, in addition to providing patient-care and bereave-

ment services.

Hospice care is based on a ‘‘biopsychosocial’’ model rather than a disease

model of care, emphasizing quality of life at the end of life and supportive care

rather than a cure or life prolongation. With the understanding that death is an

inevitable consequence of living and that loss is difficult, hospice has taken a

leadership role in providing grief support for communities. Examples include

the organization and direction of bereavement groups and counseling and pro-

grams for children, such as bereavement camps. Another important aspect of

hospice care is the provision of support and respite for family members and

friends involved in the patient’s care. Because the death of a child is particularly

difficult for all involved, partnerships among community-based hospice programs

and pediatric providers have been of great value in fostering continuity of care

from the time of diagnosis through death, for the sake of the patient, siblings,

parents, and health care professionals.

Hospice and palliative care continuum

In the United States, the developing specialty of palliative care has evolved out

of the collective hospice experience. Palliative care is a broader application of

hospice concepts, applicable to patients who have a significant burden of illness

but earlier in the disease trajectory, when death is not imminently foreseeable or

when prognosis is too unsure to consider hospice referral. To optimize outcomes

for patients who have chronic, progressive illness, palliative care should be in-

tegrated fully into disease-modifying and life-prolonging treatments. When life

expectancy is limited to months, rather than years, hospice becomes the optimal

system of care in the chronic care continuum (Fig. 1).

The intent of palliative care at all stages and settings is to prevent and relieve

unnecessary suffering. Goal-setting, along with early identification and careful

assessment and treatment of pain and other physical, psychosocial, and spiritual

problems, prevents crises and leads to a more effective use of health care re-

sources. Anticipatory planning is an important component of palliative care. In

certain settings, such as hospitals, palliative care services use a team approach to

Disease Management/Palliative Care Hospice

Interventions with Curative Intent

Disease Modifying Interventions

Palliative Interventions

Bereavement

Diagnosis of a chronic condition or illness

Prognosis of foreseeable limited life expectancy or end-stage disease

Death

Fig. 1. Conceptual model of the chronic care continuum.

fine & davis184

address the needs of patients and their families. The most successful hospital-

based palliative care programs form partnerships with local hospice programs to

provide continuity through hospital discharge, to prevent crises, to provide an

alternative to emergency department or hospital-based acute care, and to prevent

unwanted or unnecessary rehospitalization. In this model, a hospice representa-

tive (usually a social worker or nurse) also may be a member of the hospital

palliative care team. Increasingly, this approach to care improvement is being

adapted to long-term care settings because approximately 20% of the United

States population dies in nursing homes, and this number is projected to double

in the next few decades.

Access to hospice care

Despite significant increases in the numbers of patients recently using hospice

services (over 1 million patients in 2004) (Fig. 2), barriers remain to access and

timely referral, notable mostly in rural and inner city areas and among minority

populations. The need for hospice care comes at a time of life when emotions run

high, so discussions of various options and care paths require a delicate touch.

Optimally, these discussions would have occurred in advance of a life-threatening

illness to allow time for sufficient contemplation, comprehension, emotional

preparation, and documentation of patient preferences and values. Regardless

of timing, it is critically important that clinicians be able to enumerate the in-

dications for and benefits of hospice care clearly, proactively, and succinctly,

0

200000

400000

600000

800000

1000000

1985 1989 1992 1996 2000 2002

Served 1985 - 2003

Fig. 2. Number of hospice patients served between 1985 and 2003. (From National Hospice and

Palliative Care Organization (NHPCO) Web site. Available at: www.nhpco.org/files/public/Patients_

Served_1985_2002.pdf; with permission.)


just as they would for any significant clinical option, such as the decision to

pursue coronary revascularization or renal transplantation.

Clinicians can learn to emphasize that when there is no longer a ‘‘curative’’

pathway, their patients and their families who elect modern-day hospice care

are more likely to enjoy significant improvements in the quality of their lives

during the final stages of illness than those who do not. There is growing

evidence, too, to suggest that these benefits might come with appreciable cost

savings to families. This is important in view of the findings by the Study to

Understand Prognoses and Preferences for Outcomes and Risks of Treatment

(ie, SUPPORT) that families who did not obtain hospice care suffered major

financial hardship through the course of their loved ones’ last months of life [5].

This is corroborated by Medicare claims data, which find that 30% of Medicare

dollars are spent during the last 12 months of life, but only 3% of the annual

Medicare budget is spent on the MHB [6].

Characteristics of a quality hospice program

A quality hospice program provides an interdisciplinary team of experts who

deal with all aspects of the dying process: physical, emotional, social, practical,

and spiritual. Tracking key quality measures (eg, pain relief) is part of a good

hospice’s compliance and continuous quality improvement program. Recently,

this imperative has been added to the MHB conditions of participation, which

delineate the standards that must be followed to maintain Medicare certification

and payment for services [7].

Small programs may be financially challenged to admit patients who are

undergoing costly but helpful concurrent therapies (eg, palliative chemotherapy

fine & davis186

or radiation therapy, transfusions, hematologic- and immunologic-enhancing thera-

pies, interventional pain management, and similar therapies). Similarly, many

patients who have end-stage disease are receiving ‘‘aggressive’’ therapies

(eg, tube feedings, parenteral nutrition, and antiretroviral therapies) that are no

longer medically beneficial but have taken on significant symbolic value (ie, the

patient or family has become psychologically dependent on them). These patients

and their families need skilled help in making a transition to other more useful

forms of palliative and supportive therapy. Therefore, quality hospice programs

will have plans and capable staff in place to help with the transition from a ‘‘do

everything’’ mindset to ‘‘context appropriate’’ care, without preselecting patients

based on the level of complexity involved in their care. Because of financial

exigencies and current clinical expectations, it is becoming an economic reality

that consolidation of small programs is likely to be the only realistic way to

provide comprehensive, high-quality services to all hospice-eligible patients.

The National Hospice and Palliative Care Organization (NHPCO) (see Ap-

pendix), as part of its National Quality Initiative to improve end-of-life care,

benchmarks hospice programs nationally through a standardized Family Satis-

faction Survey tool. This survey tool is distributed to families after the death of

the patient and assays a diverse range of experiences, including pain control, the

efficiency of the after-hours staff, and timeliness from referral to admission to

the hospice program. Physicians and families can request the results and are

encouraged to do so when deciding on a program in their community.

Care settings and levels of care

Notwithstanding the historical roots of hospice in Great Britain as a com-

modious home specifically designed for care of the dying, hospice no longer

defines itself as a place per se but rather an applied approach to care. Hospice care

is provided in the patient’s own home, a nursing home, or, when appropriate to a

given set of circumstances, other facilities. By statute, Medicare-certified hos-

pices must provide inpatient care if it is needed. Similarly, there must be provi-

sions for extended hours of continuous nursing care if clinical circumstances

warrant it and respite care for families as dictated by each patient’s or family’s

clinical and social circumstances at any given time.

Some hospice programs maintain a separate ‘‘hospice house’’ for inpatient or

residential care, and others contract with long-term care facilities or hospitals to

provide inpatient care when this level of care is indicated. A 2004 compilation

by the National Hospice and Palliative Care Organization found that, of the

approximately 1 million patients cared for under hospice during that calendar

year, approximately 58% died at home, and approximately 22% died in a

nursing facility. The remaining 20% of the patients were in hospitals, hospice-

operated inpatient facilities, free-standing hospice units, or residential care set-

tings (S. Connor, NHPCO, personal communication, 2005).


Medicare hospice benefit

Most hospice care in the United States is reimbursed under the MHB, which

was first legislated in 1982. Currently, more than 90% of hospice programs in the

United States are certified by Medicare. Medicare beneficiaries who elect hospice

care may choose to receive a full range of palliative medical and support services

for their terminal illness. The MHB is covered under Medicare Part A in lieu of

standard Part A (hospital) benefits (Table 1) [6]. Because approximately 80% of

those dying in the United States are Medicare beneficiaries, this entitlement has

had an enormous impact on end-of-life care in this country. In fact, the only

operational definition of ‘‘terminal illness,’’ defined as a ‘‘prognosis of 6 months

or less if the disease runs its normal course,’’ comes from the legislative language

of the MHB. Although this is a rather arbitrary determination, with significant

inherent difficulties because of prognostic uncertainty [8], it has created some

structure around which to educate providers, patients, and their families, and to

construct guidelines for hospice eligibility under Medicare.

The Medicare Hospice Benefit has become the model for the coverage

provisions of most private insurers and state Medicaid programs. Medicare pays

Table 1

Provisions of the Medicare Hospice Benefit

Category Description of benefits

Criteria Eligible for Part A of Medicare

Terminally ill with a life expectancy of 6 months or less if disease runs its

normal course

Coverage Physician (hospice medical director) oversight

Nursing care

Case management

Medical appliances and supplies

Medications related to the terminal illness and palliation of symptoms

Speech therapy

Short-term inpatient and respite care

Physical and occupational therapy

Dietary counseling

Homemaker and home health aide services

Continuous care

Counseling and social work service

Spiritual care

Volunteer participation

Bereavement services

Timing Two 90-day certification periods

An unlimited number of subsequent 60-day periods

For the first 90-day certification period, hospice certification must be obtained from

both the beneficiary’s attending physician and the hospice medical director or the

physician member of the hospice interdisciplinary group. After that, other 60-day

periods require certification by only one physician.

fine & davis188

the hospice program a daily rate that is intended to cover all clinically indicated

expenses related to the patient’s terminal illness. Because patients may require

different intensities of care during the course of their disease, there are four

levels of care available, reimbursed at different rates: routine home care, con-

tinuous home care, inpatient respite care, and general inpatient care. More than

95% of hospice care is provided at the routine home care level.

Historically, most hospice patients were end-stage cancer patients, with rela-

tively short length of stays in hospice, and still today, 50% of cancer patients

admitted to hospice die in less than 1 week. Recent statistics show a median

length of stay of approximately 2 weeks for all patients. Over the last several

years, terminally ill patients who have noncancer diagnoses have been encour-

aged to take advantage of the myriad benefits of hospice care, and this trend

is increasing both the hospice use and the average lengths of stay. The MHB

requires that 80% of the total number of patient care days provided by a hospice

provider must be under the routine home care level of care and no more than

20% be under the Inpatient level of care.

The MHB is reimbursed through one of five Regional Home Health and

Hospice Intermediaries (RHHI), designated by the Centers for Medicare and

Medicaid Services (CMS): Palmetto Government Benefit Administrators, As-

sociated Hospital Service, United Government Services (two divisions), and

Cahaba Government Benefit Administrators. Each RHHI serves several states

(Table 2). The RHHIs have the authority and responsibility to assure that pay-

ment for services is justified, based on beneficiary or patient eligibility. For

hospice, a set of criteria for various diagnostic groups (initially called local medi-

Table 2

Medicare regional home care and hospice intermediaries

Provider States served

Palmetto GBA Alabama, Arkansas, Florida, Georgia, Illinois,

Indiana, Kentucky, Louisiana, Mississippi,

New Mexico, North Carolina, Ohio, Oklahoma,

South Carolina, Tennessee, Texas

Associated Hospital Service Connecticut, Maine, Massachusetts, New

Hampshire, Rhode Island, Vermont

United Government Services (Wisconsin) Michigan, Minnesota, New Jersey, New York,

Puerto Rico, the Virgin Islands, Wisconsin

United Government Services (California) Alaska, Arizona, California, Hawaii, Idaho,

Oregon, Nevada, Washington, Northern Mariana

Islands, Guam, American Samoa

Cahaba Government Benefit Administrators Colorado, Iowa, Kansas, Missouri, Montana,

Nebraska, North Dakota, South Dakota, Utah,

Wyoming, Delaware, District of Columbia,

Maryland, Pennsylvania, Virginia, West Virginia

Data from Centers for Medicare and Medicaid Services. Provider Enrollment. Available at: http://

www.cms.hhs.gov/providers/enrollment/providers/hospice.asp. Accessed June 6, 2005.

http:\\www.cms.hhs.gov\providers\enrollment\providers\hospice.asp


cal review policies but more recently renamed local coverage determinations

[LCDs]) were established several years ago. The criteria may differ among

intermediaries, and they are modified periodically at the discretion of the inter-

mediary. The LCDs outline specific clinical determinants of limited life expec-

tancy to support the assertion of a prognosis of 6 months or less (Table 3).

Hospice eligibility and use under Medicare

Notwithstanding the value of the MHB, notably the past 20-year history of

high marks for patient and family satisfaction, a minority of Medicare bene-

ficiaries take advantage of this entitlement. Election of the MHB seems to have

more to do with systems issues than with diagnosis or prognosis. For instance,

recent data indicate that Medicare beneficiaries enrolled in managed care plans

are more likely to use hospice (33%) than those with fee-for-service coverage

(25%) [9].

Under-usage of hospice has led the CMS, a branch of the federal Depart-

ment of Health and Human Services, to encourage physicians to consider

whether their patients are eligible for hospice care. Because life expectancy is not

commonly considered during routine office visits, a helpful aid for physicians

is to ask themselves, ‘‘Would I be surprised if this patient were to die from

progression or complications of their underlying chronic condition?’’ If the

answer is, ‘‘No, I would not be surprised,’’ then the physician should enter into

serious discussions about goals of care, a review of advance directives, and the

benefits versus burdens of hospitalization (including intensive care) and shift

the emphasis of clinical management to a palliative care focus, including hos-

pice referral.

The statutory language of the MHB simply states that a Medicare Part A

beneficiary is eligible for hospice if she or he has a life expectancy of 6 months or

less if the disease runs its normal (ie, typical, usual, or expected) course. Because

this is a statistical probability, based on a population of patients at the same stage

of an illness (eg, stage IV heart failure), any given patient may die far more

quickly or, conversely, live much longer than 6 months. The 6-month life expec-

tancy certification is based on the physician’s best clinical judgment. Neither

the physician nor the patient will be penalized if the patient lives longer than

6 months because the benefit may continue indefinitely, as long as there con-

tinues to be reasoned clinical judgment sustaining a prognosis of 6 months or

less. Being intimately familiar with the determinants of limited life expectancy,

many hospice programs can be of assistance by providing consultation services to

establish hospice eligibility (see below).

Contrary to popular belief, the MHB does not require that the patient have a

do-not-resuscitate order, nor is it mandated that any specific intervention (eg, tube

feedings, transfusions, or palliative chemo- or radiation therapy) be discontinued

to qualify for hospice.

Table

3

Localcoveragedeterminationcriteria

forhospiceeligibilityunder

medicare

Condition

Primarycriteria

Secondarycriteria/notes

Heartdisease

Patienthas

oris

Other

factors

supportingdiagnosisofend-stage

heartdisease:

1.A

poorresponse

to(orchoosesnotto

pursue)

optimal

treatm

entwithdiuretics,vasodilators,and/orACEinhibitors

1.Treatment-resistantsymptomatic

supraventricular

orventriculararrhythmias

2.Anginapectorisat

restthat

isresistantto

standard

nitrate

therapy

2.A

history

ofcardiacarrestorresuscitationand

unexplained

syncope

3.Notacandidateforordeclines

invasiveprocedures;and

3.A

brain

embolism

ofcardiacorigin

4.SignificantsymptomsofrecurrentCHFat

restand/or

refractory

angina

4.Anejectionfractionof20%

orless,and

5.Classifiedas

NYHA

IV5.ConcomitantHIV

disease

HIV

/AID

SPatientsareconsidered

tobein

theterm

inal

stageoftheir

disease

ifthey

have

Documentationofthefollowingfactors

willsupport

eligibilityforhospicecare:

1.CD4+count�25cells/mL

orpersistentviral

load

�100,000copies/mL,

plusoneofthefollowing:

1.Chronic

persistentdiarrhea

for1y

a.CNSlymphoma

2.Persistentserum

albumin

�2.5

g/dL

b.Loss

of33%

lean

bodymass

3.Concomitant,activesubstance

abuse

c.Mycobacterium

avium

complexbacteremia,untreated,

unresponsiveto

treatm

ent,ortreatm

entrefused

4.Age�50y

d.Progressivemultifocalleukoencephalopathy

5.Absence

ofantiretroviral,chem

otherapeutic,

and

prophylactic

drugtherapyrelatedspecifically

to

HIV

disease

e.System

iclymphoma,

withadvancedHIV

disease

and

partial

response

tochem

otherapy

6.AdvancedAID

Sdem

entiacomplex

f.VisceralKaposi’ssarcomaunresponsiveto

therapy

7.Toxoplasm

osis,and

g.Renal

failure

intheabsence

ofdialysis

8.Congestiveheartfailure,symptomatic

atrest

h.Cryptosporidium

infection;or

i.Toxoplasm

osis,unresponsiveto

therapy

2.Decreased

perform

ance

status,as

measuredbythe

KarnofskyPerform

ance

Statusscale,

of50%

fine & davis190

Pulm

onarydisease

Forpatientswithvariousform

sofadvancedpulm

onarydisease

who

eventually

follow

afinal

commonpathway

toend-stagepulm

onarydisease:

Tolendsupportingdocumentation:

1.Severechronic

lungdisease

asdocumentedbyboth

aandb:

1.Corpulm

onaleandrightheartfailure

secondary

topulm

onarydisease

(eg,notsecondaryto

left

heartdisease

orvalvulopathy)

a.Disablingdyspnea

atrest,unresponsiveto

bronchodilators,

withdecreased

functional

capacity;and

2.Unintentional

progressiveweightloss

ofgreater

than

10%

ofbodyweightover

thepreceding

6months,and

b.Progressionofend-stagepulm

onarydisease,evidence

includingpriorincreasingvisitsto

theem

ergency

departm

entorpriorhospitalizationsforpulm

onary

infectionsand/orrespiratory

failure

3.Restingtachycardia

�100/m

in

2.Hypoxem

iaat

restonroom

air;evidence:pO2�55mm

Hg

oroxygen

saturation�88%

orhypercapnia;evidence

pCO2�50mm

Hg

Renal

disease

Patientsareconsidered

tobein

theterm

inal

stageofrenal

disease

if

Supportingdocumentation

Forchronic

renal

failure:

Signsandsymptomsofrenal

failure:

1.Thepatientisnotseekingdialysisorrenal

transplant;or

consideringdiscontinuation

1.Uremia;

2.Creatinineclearance

�10cc

3/m

inute

(�15cc

3/m

infor

diabetes),and

2.Oliguria(�

400cc

3/d)

3.Serum

creatinine�8.0

mg/dL(�

6.0

mg/dLfordiabetes)a

3.Intractable

hyperkalem

ia(�

7.0)notresponsive

totreatm

ent

4.Uremic

pericarditis

5.Hepatorenal

syndrome,

and

6.Intractable

fluid

overload,notresponsive

totreatm

ent

ALS

Patientsareconsidered

tobein

theterm

inal

stageofALSif

oneofthefollowingthreesituationsoccurs

within

the12mo

precedinginitialhospicecertification:

Somegeneral

considerations

1.Criticallyim

pairedbreathingcapacityas

dem

onstratedby

allofthefollowingcharacteristics12mobefore

initial

hospicecertification:

1.ALStendsto

progress

inalinearfashionover

time,

sotheoverallrate

ofdeclinein

each

patientisfairly

constantandpredictable

Vital

capacityless

than

30%

ofnorm

al

Significantdyspnea

atrest

2.Multiple

clinical

param

etersarerequired

tojudge

theprogressionofALS

3.AlthoughALSusually

presentsin

alocalized

anatomic

area,thelocationofinitialpresentation

does

notcorrelatewithsurvival

time

(continued

onnextpage)


Table

3(continued)

Condition

Primarycriteria


ALS

Requiringsupplementaloxygen

atrest,and

Patientdeclines

artificial

ventilation

4.Progressionofdisease

differs

markedly

from

patientto

patient

5.In

end-stageALS,twofactors

arecritical

in

determiningprognosis:abilityto

breatheand,to

a

lesser

extent,abilityto

swallow

2.Rapid

progressionofALSandcritical

nutritional

impairm

ent

dem

onstratedbyallofthefollowingcharacteristics:

a.Rapid

progressionfrom

Independentam

bulationto

wheelchairorbedboundstatus

Norm

alto

barelyintelligible

orunintelligible

speech

Norm

alto

pureed

diet,and

Independence

inmostorallADLsto

majorassistance

by

caretaker

inallADLs

b.Criticalnutritional

impairm

ent:

Oralintakeofnutrientsandfluidsinsufficientto

sustainlife

Continuingweightloss

Dehydrationorhypovolemia,and

Absence

ofartificial

feedingmethods

3.Both

rapid

progressionofALSandlife-threatening

complications,includes

rapid

progressionofALS(see

2a

above)

and

a.Life-threateningcomplications:

Recurrentaspirationpneumonia

(withorwithout

tubefeedings)

Upper

urinarytractinfection(eg,pyelonephritis)

Sepsis,and

Recurrentfever

afterantibiotictherapy

fine & davis192

Stroke

Thefollowingareim

portantindicators

offunctional

andnutritional

status,respectively,

andsupportaterm

inal

prognosisifmet:

Ifthepatientdoes

notmeetboth

oftheprimary

criteria,thereshould

bedocumentationthat

describes

arelevantcomorbidityand/orrapid

decline

1.A

PalliativePerform

ance

scalescore

of�40%

a.Degreeofam

bulation;mainly

inbed

b.Activity/extentofdisease:unable

todowork;

extensivedisease

c.Abilityto

doself-care;

mainly

assistance

d.Food/fluid

intakenorm

alto

reduced

e.State

ofconsciousnesseither

fullyconsciousor

drowsy/confused

2.Inabilityto

maintain

hydrationandcaloricintake

withoneofthefollowing:

a.Weightloss

�10%

duringprevious6mo

b.Weightloss

�7.5%

inprevious3mo

c.Serum

albumin

�2.5

g/dL

d.Currenthistory

ofpulm

onaryaspirationwithout

effectiveresponse

tospeech

languagepathology

interventions,or

e.Caloriecountsdocumentinginadequate

caloric/fluid

intake

Alzheimer

disease

and

relateddisorders

ForAlzheimer

disease

andrelateddisorders,theidentificationof

specific

structural/functional

impairm

ents,together

withanyrelevant

activitylimitations,should

serveas

thebasisforpalliativeinterventions

andcare

planning.Thestructuralandfunctional

impairm

entsassociated

withaprimarydiagnosisofAlzheimer’sdisease

areoften

complicated

bycomorbid

and/orsecondaryconditions.

TheFASTscalehas

beenusedformanyyears

to

describeMedicarebeneficiaries

withAlzheimer

disease

andaprognosisof6moorless

TheFASTscaleisa16-item

scaledesigned

to

paralleltheprogressiveactivitylimitations

associated

withAlzheimer

disease

(continued

onnextpage)


Table

3(continued)

Condition

Primarycriteria


Alzheimer

disease

and

relateddisorders

Comorbid

conditionsaffectingbeneficiaries

withAlzheimer

disease

arebydefinitiondistinct

from

theAlzheimer

disease

itself.Exam

plesincludecoronaryheartdisease

andCOPD.

Secondaryconditionsaredirectlyrelatedto

aprimarycondition.

Inthecase

ofAlzheimer

disease,exam

plesincludedelirium

andpressure

ulcers.

FASTstage7identifies

thethreshold

ofactivity

limitationthat

would

supporta6-m

oprognosis

Ultim

ately,

thecombined

effectsofAlzheimer

disease

(FAST

stage7)andanycomorbid

orsecondaryconditionshould

be

such

that

thepatientwhohas

Alzheimer

disease

andsimilar

impairm

entswould

haveaprognosisof6moorless.

TheFASTscaledoes

notaddress

theim

pactof

comorbid

andsecondaryconditions

Abbreviations:

ACE,angiotensin-convertingenzyme;

ALS,am

yotrophic

lateralsclerosis;CHF,congestiveheartfailure;CNS,central

nervoussystem

;COPD,chronic

obstructivepulm

onarydisease;FAST,functional

assessmentstaging.

aSee

Ref.12foracute

renal

failure

criteria.

Data

from

SchonwetterRS,Chirag

RJ.Survivalestimationam

ongnoncancerpatientswithadvanceddisease.In:PortenoyRK,BrueraE,editors.Topicsin

palliativecare,

volume4.New

York:Oxford

University

Press;2000.p.55–74;NYHA,New

York

HeartAssociation.

fine & davis194


Hospice in the nursing home

The value of hospice care in the nursing home, to patients, their families, and

to the facility staff, seems to be increasingly appreciated. The proportion of

hospice patients residing in nursing homes is growing faster than the growth of

hospice enrollees as a whole, from 11% of all hospice patients in 1992 to 36% in

2000. Medicare requires a contract agreement between each hospice and the long-

term care facility, and there must be a documented, coordinated care planning

process in place for each hospice patient residing in the nursing home. This re-

quires good ongoing communication among hospice and nursing home person-

nel, especially the respective provider groups’ medical directors.

Recent developments in hospice care

The US Congress and CMS recently have made changes through the Medicare

Prescription Drug Improvement and Modernization Act of 2003 [10] to en-

courage use of the MHB benefit.

Consulting services

If a Medicare beneficiary is believed to be terminally ill and has not yet elected

the hospice benefit, Medicare will pay for a consultation visit with the hospice

medical director or physicians who are employees of a hospice program. During

this visit, the physician may evaluate the individual’s need for pain and symptom

management, counsel the individual on end-of-life issues and care options, and

give advice on planning end-of-life care. Hospices receive payment for this ser-

vice that is equal to the allowable Medicare fee for an outpatient visit of mod-

erate severity. In turn, the physician will be paid by the hospice.

Nurse practitioner services

It is recognized that nurse practitioners (NPs) are playing an increasing role

in primary care. With respect to hospice services, this provision changes the

definition of ‘‘attending physician’’ to include NPs, to help maintain continuity of

care between patient and primary care provider. It removes the disincentive for

nurse practitioners from actively promoting hospice care as an appropriate health

care choice for their patients who have advanced illnesses. However, this pro-

vision specifically excludes NPs from officially certifying a patient as termi-

nally ill, a determination that must be made by the hospice medical director

under these circumstances. As a result of this statutory change, NPs who are

not employed by a hospice are able to continue to bill Medicare for services

for their patients who elect hospice, as attending physicians do currently, and

to review and participate in the plan of care.

fine & davis196

Prognostication

Prognostication can be a difficult and delicate task, involving both sociologic

and physiologic judgments. Although death per se is a clear biological phenome-

non, perceptions about the meaning, eventuality, timing, and circumstances sur-

rounding death and dying are socially constructed. Consequently, prognosis can

be difficult to gauge with precision. Standard medical texts generally give the

subject short shrift, and there are few tools available to aid in the judgment.

Physicians may be aided through consultation with an experienced hospice medi-

cal director or palliative medicine practitioner who has experience in this area.

A study in 2000 by Christakis and Lamont [8] has found that prognostic

accuracy generally errs on the side of excessive optimism. Only 20% of surveyed

physicians’ prognoses were accurate within 33% of the actual survival time, 63%

of physicians were overoptimistic about life expectancy, and 17% of physicians

underestimated survival time. As the duration of the doctor-patient relationship

increased, prognostic accuracy actually decreased. There was an average 8-fold

overestimation of life expectancy for patients who died within 30 days of the

prognostic determination. These data strongly reinforce the need for research in

this area and for evaluating life expectancy with as many objective measures as

possible. Otherwise, patients will die without the benefits of hospice care.

Clinical judgment and atypical cases

Some frail, elderly patients manifest a pattern of diminishing vitality and seem

to be on a predictable trajectory toward imminent death but without a specific

pathophysiologic (ie, organ system-specific) diagnosis. Similarly, there are older

individuals with progressive functional impairment and continuous weight loss

who may have several chronic conditions (eg, hypertension, coronary artery dis-

ease, and diabetes) but no single imminently fatal disease process. They may have

a recent acceleration in functional or cognitive decline and may have decided not

to pursue aggressive medical evaluation or treatment because of advanced age,

poor general health, cognitive impairment, or excessive opportunity costs (high

burden-to-benefit determination). They, too, should be evaluated actively and

referred for hospice care as indicated. For these patients, hospice care is important

for their (and their family members’) overall well being at this critical life juncture,

so clinical judgment must come into play even more to assure timely referral to

hospice. The recognition of this within the medical community is evidenced by

the growing proportion of noncancer patients referred to hospice in recent years,

from 24% in 1992 to 43% in 1998 and to 49% of hospice caseloads in 2000.

In elderly patients, one of the most sensitive but nonspecific indicators of lim-

ited life expectancy is unintended weight loss (�10%) over a period of 6 months

or a body mass index (BMI) of less than 22 kg/m2 [11]. Patients of any age with

a BMI less than 20 kg/m2 who are ill enough to be hospitalized, regardless of

diagnosis have the highest overall mortality in the 6 months after discharge.


Coupled with weight loss, progressive difficulties with the activities of daily

living (ADLs) and limited functional capacity (inability to ambulate) are sensitive

predictors of 6-month mortality, independent of other disease-related variables [12].

These factors are important to recognize, document, and consider when caring for

these patients so that realistic and truly helpful conversations and care planning can

take place before crises occur or nonbeneficial therapies are begun.

Measuring clinical decline

The Karnofsky Performance Status scale was developed several decades ago

for cancer patients as an objective means of documenting a patient’s clinical

decline by assessing his or her ability to perform certain basic activities. Most

patients with a Karnofsky scale lower than 70% are eligible for hospice care

because this threshold signals progression to end-stage disease, unless there is a

predictably reversible cause of morbidity or a beneficial and sustaining anti-

neoplastic therapy that is both available and tolerable.

A more useful tool that can be applied to all patients to measure clinical

decline and aid in prognosis, irrespective of chronic progressive disease, is the

Palliative Performance Scale (PPS) [13,14]. The initial applications of the PPS

included its use as a communication tool, analysis of home nursing care work-

load, profiling admissions and discharges to the hospice unit, and prognostica-

tion. The investigators assessed 119 patients in their homes, 73% of whom had a

PPS rating between 40% and 70%. Of 213 patients admitted to the hospice unit,

175 (83%) had PPS ratings of 20% to 50% on admission. The average period

until death for 129 patients with PPS ratings of 10% on admission who died in

the unit was 1.88 days, 2.62 days at 20%, 6.70 days at 30%, 10.30 days at 40%,

and 13.87 days at 50%. Only two patients with a PPS score of 60% or higher died

in the unit.

On the PPS scale, a score of 50% indicates that the patient tolerates only

sitting or recumbency and requires considerable assistance with ADLs. A 40%

score identifies a patient who spends a majority of time in bed and requires

assistance with all ADLs, whereas a 30% score indicates that the patient is con-

fined to a bed and requires total care. Absent other comorbid conditions, a patient

is generally seen as eligible for hospice if the PPS score is 40% or less, without

the likelihood of improvement. Older patients with higher PPS scores accom-

panied by other morbid findings (eg, unintended weight loss and rapid decline in

physical or mental capacities) also should be evaluated for hospice care because

they too have predictably short life expectancies.

Needs of the patient and family

End-of-life care means different things to different people. Singer and col-

leagues [15] identified five factors that terminally ill patients felt were most

fine & davis198

important in their care: relief from unpleasant symptoms, the avoidance of pro-

longed dying, control over care decisions, the desire not to be a burden, and

strengthening relationships with loved ones.

For the patient (who has the greatest stake in obtaining high quality care but

often has the least decision-making capacity), the clinical imperative is for a

dignified transition from living to dying to death that occurs peacefully and

without discomfort. For the family, this is usually a time of reflection, family

restructuring, and sadness. It may also be a time of relief at the end of suffering

and exhausting care giving; however, often there also are feelings of regret and

guilt over missed opportunities and damaged relationships. For most clinicians,

end-of-life situations occur regularly, and although these may be considered to

be an unavoidable part of the profession, there is usually little formal training

to prepare for the myriad issues that attend the imminent and actual death of a

patient. As a result, it is common for denial, emotional distancing, or a personal

or professional sense of defeat to prevail. Establishing a relationship with a

quality hospice program can help clinicians meet their professional responsibili-

ties to their patients and to obtain a greater sense of competency, even mastery

and profound personal and professional growth, in dealing with dying, death,

recurrent grief, and bereavement.

Barriers to hospice access

Difficulties with facing and discussing death and dying by patients, families,

and clinicians continue to be the major reason that hospice is underused and so

many patients are referred late in the course of a terminal illness.

Difficult conversations

Larson and Tobin [16] elaborate several reasons why clinicians may shy

away from end-of-life conversations. The efforts of the modern era of medical

care have been focused on curing or, at least, stabilizing serious illness and

rescuing patients from imminent death. Fear of failure, causing pain and dis-

appointment through admitting and sharing news about a negative prognosis,

and the lack of knowledge of how to proceed with practical and interpersonal

details related to death may delay the conversation. Clinicians who see death as

an enemy to be defeated will perceive a recommendation to hospice as a de facto

admission of defeat. Anticipating disagreements or discomfort with the patient

or family and worrying about medical-legal concerns can make discussions

about end-of-life care difficult, as well. Simply, it is far easier and in confor-

mance with our cultural norms for clinicians and patients and families to prac-

tice avoidance.

Physicians and other health care providers also are less likely to initiate end-

of-life discussions when they lack the needed interpersonal and communication


skills. These skills are no more innate than is pharmacologic expertise, but

training in these skills and in how to have conversations with dying patients is

rarely included in medical school curricula, nor is it commonly modeled during

postgraduate bedside training [17]. It should be noted that, according to the

NHPCO Family Satisfaction Survey, when asked if there is anything they would

change, the most common response by family members receiving hospice care is

that they wish they would have been referred sooner to hospice or, specifically,

‘‘why didn’t my doctor tell me about hospice sooner?’’ (S. Connor, NHPCO,

personal communication, 2005).

Cultural issues

Racial and cultural barriers to accessing hospice services exist, and geographic

location (eg, rural communities and inner cities) clearly affect access to hospice

care [18]. In 2002, 82% of hospice patients identified themselves as white, a rate

that has held steadily since 2000. Although each ethnic and racial group holds a

wide variety of attitudes, there is some evidence for shared views within similar

populations. For example, African Americans express suspicion of their health

care providers’ motives more so than other populations. When there is concern

about the fair distribution of resources and equal access to life-saving health care,

concern about premature referral to hospice is understandable.

Other cultural barriers include religious beliefs that balk at the idea of an

‘‘ending’’ to life, an acceptance of suffering as part of the nature of being human,

and other beliefs about death that prohibit approaching the subject openly and

frankly. Although it is important for clinicians to understand the general cultural

and ethnic beliefs of their patients, each case must be approached individually

because any assumptions may lead to even wider misunderstandings.

Support for caregivers

Counseling services for patients and families are an important part of hospice

care, but there are few outcomes studies that go beyond anecdotal reports. A

review of families’ needs in critical care settings by Hickey [19] has found that

families rated information needs are the most important, followed by needs for

reassurance and convenience.

After the patient’s death, Medicare rules require that bereavement support

be available to families for at least 1 year. These services can take a variety of

forms, including telephone calls, visits, written materials about grieving, and

support groups. Individual counseling may be offered by the hospice, or the

hospice may make a referral to a community resource. For long-term care staff,

hospice-provided bereavement follow-up may take the form of a monthly

memorial service, support groups, or debriefings facilitated by counselors of the

hospice program.

fine & davis200

Physicians and hospice: billing for hospice services

Once a patient is determined to be eligible for hospice care and is enrolled,

several physicians may have involvement in the patient’s care. The patient can

request that her or his attending physician retain that role or the hospice medical

director can take over that designation, at the discretion of the patient’s physician

and the patient. Often, this latter decision is made to simplify decision making

and as an acknowledgment of the hospice physician’s expertise in end-of-life

care. Under the provisions of the Medicare Hospice Benefit, the attending

physician is the clinician whom the patient designates as having the primary role

in the determination and delivery of the individual’s medical care. As described

earlier, as of October 1, 2004, NPs may function in the attending role for hos-

pice patients, at the patient’s discretion. Under this new provision, NPs may

bill Medicare Part B for physician services related to their hospice patients’

terminal illnesses.

Hospice medical directors may bill for physician services to hospice patients,

but those services are paid by Medicare Part A. The patient’s choice of the at-

tending is not absolute, and the patient is free to change the attending physician

or NP. The attending clinician provides orders and, if not the hospice medical

director, often defers to the hospice medical director for medical components of

the hospice plan of care because the medical director tends to be the medical

provider most closely involved in daily clinical care of the patient.

A consulting physician is any nonattending, nonmedical director physician

who provides a service as a part of the hospice plan of care. There must be a

contract between the consultant and the hospice for these services, and the hos-

pice is the manager of the care. The hospice directly reimburses the consultant

physicians for services.

Any attending clinician who is not employed by the hospice (this generally

includes all clinicians except the hospice medical director) can bill Medicare

Part B for Physician Care Plan Oversight (CPT 99,378) if he or she has seen

the patient within 6 months of billing for oversight for the first time, the pa-

tient is not a nursing facility resident, and there were 30 minutes or more of

oversight activity not related to any other separately billable activity in a calen-

dar month. Professional services should be billed by the attending to Medicare

Part B, and the physician or NP will receive 80% of the Medicare-allowable fee.

The patient is still responsible for any remaining deductible and co-insurance.

The attending clinician must indicate that he is not employed by the hospice

on the claim. It is important to verify exact procedures with individual states’

Medicare Part B carrier.

Criteria for Medicare coverage and payment for services are federally regu-

lated and generally do not vary over geographic regions. Private insurers usually

follow the same criteria as Medicare in determining reimbursement rates for

hospice services. For example, both the Oxford Health Plan and Aetna Insurance

Company cover hospice care at no additional charge for 210 days under many

of their plans.


Hospice services for children

According to the most recent figures from NHPCO, hospice serves ap-

proximately 5000 young adults, adolescents, and children under the age of 24

(S. Connor, NHPCO, personal communication, 2005). This number reflects ap-

proximately 20% of those who die each year within this age group in the United

States. Children’s services usually are covered through a variety of private and

public payers because children do not meet Medicare eligibility requirements.

Charitable funding by most hospice programs covers uncompensated care to

children who are not covered under Medicaid and whose families have limited

insurance coverage.

There also are programs such as the Children’s Hospice International (CHI)

Program for All-Inclusive Care for Children and their Families (PACC), which

provides a continuum of care for children and their families from the time that a

child is diagnosed with a life-threatening condition, with hope for a cure, through

the bereavement process, if cure is not found. The CHI PACC model programs

are funded by government grants through the US Department of Health and

Human Services. Model programs are being implemented currently in Colorado,

Florida, Kentucky, New York, Utah, and Virginia. Demonstration programs will

soon be expanded to additional states (see Appendix).

Summary

When life expectancy is short, time is precious. Technologic advances have

given us great power to prolong life but also to prolong dying, a critically im-

portant distinction that patients may not be able to avoid without sagacious

guidance. Understanding patients’ values and goals and assisting them and their

loved ones to come to terms with mortality is a difficult but necessary task, to

help patients avoid unnecessary suffering and to obtain the best care at this final

stage of life. Aiding patients and their families in finding renewed hope through

optimizing quality of life and completing (as much as is possible) the ‘‘unfinished

business’’ of their lives is both an acknowledgment and fulfillment of the im-

peratives of medicine: to value life, restore health when possible, and relieve

suffering always. Hospice is a tangible means to those ends.

Appendix

Online resources for clinicians

The National Hospice and Palliative Care Organization (NHPCO) (www.

nhpco.org) is the largest nonprofit membership organization representing

hospice and palliative care programs and professionals in the United States.


fine & davis202

NHPCO offers information for health providers and patients, including

conferences, courses, updates, and more [20].

The American Academy of Hospice and Palliative Medicine (AAHPM)

(www.aahpm.org) is an organization of physicians and other medical pro-

fessionals that helps to educate health professionals on palliative medicine

and hospice care, as well as training physicians, preparing physicians to

become medical directors of hospice, and other services [21].

The End-of-Life Nursing Education Consortium (ELNEC) project (www.

aacn.nche.edu/elnec/about.htm) is a comprehensive, national education

program to improve end-of-life care by nurses. Primary project goals are to

develop a core of expert nursing educators and to coordinate national

nursing education efforts in end-of-life care. This group offers courses and

educational materials for nurses [22].

The EPEC Project–Education for Physicians on End-of-life Care (http://www.

epec.net/EPEC/webpages/index.cem) was developed by the American

Medical Association to aid in educating physicians in the United States

on the clinical competencies required to provide quality end-of-life care.

The project provides courses, manuals, and modules with practical advice

on end-of-life care [23].

The Hospice Foundation of America (HFA) (www.hospicefoundation.org)

provides resources and teleconferences on end-of-life topics for both health

professional and patients [24].

Medical College of Wisconsin Palliative Care Program (www.eperc.mcw.

edu/display/router) is committed to improving care for dying Americans

by developing and implementing ideas and solutions by professional care-

givers and institutions [25].

National Association for Home Care (NAHC) (www.nahc.org) serves the

home care and hospice industry [26].

Online resources for patients, families, and caregivers

Children’s Hospice International (CHI) (www.chionline.org) is a nonprofit or-

ganization that provides education, training, and technical assistance to

those who care for children with life-threatening conditions and their

families [27].

Americans for Better Care of the Dying (ABCD) (www.abcd-caring.org) is a

group that helps organizations and individuals institute improvements in

community care systems. They offer concrete advice and advocacy [28].

Promoting Excellence in End-of-Life Care (www.promotingexcellence.org)

works to provide long-term changes in health care for dying people and

their families. They are involved with demonstration projects and peer

workgroups that address the challenges to existing models of hospice and

palliative care [29].

Caregiver Survival Resources (www.caregiver911.com) is a resource designed

to help people cope with the demands of caregiving [30].

http:\\www.aahpm.org

http:\\www.aacn.nche.edu\elnec\about.htm

http:\\www.epec.net\EPEC\webpages\index.cem

http:\\www.hospicefoundation.org

http:\\www.eperc.mcw.edu\display\router

http:\\www.nahc.org

http:\\www.chionline.org

http:\\www.abcd-caring.org

http:\\www.promotingexcellence.org

http:\\www.caregiver911.com


Dying Well (www.dyingwell.com) offers resources for patients and their fami-

lies when facing life-limiting illnesses [31].

Medicare Rights Center (www.medicarerights.org) provides free counseling

services to Medicare beneficiaries [32].

National Family Caregivers Association (http://nfcacares.org) helps caregivers

adjust to their lives and encourages the living of a whole life [33].

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http:\\www.hospicefoundation.org

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http:\\www.nahc.org

http:\\www.chionline.org

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http:\\www.promotingexcellence.org

http:\\www.caregiver911.com

http:\\www.dyingwell.com

http:\\www.medicarerights.org

http:\\www.nfcacares.org

Documents

Hospice: Comprehensive Care at the End of Life