Hospice Care in the United States
According to estimates of the National Hospice and Palliative Care Organization,
there were approximately 5,800 hospice programs in the United States in 2013. In
that year, 42.9% of all deaths in the United States occurred under hospice care.
Hospices provided care for patients with various terminal illnesses (e.g., cancer
[36.5% of all admissions], heart disease [13.4%], dementia [15.2%], and lung
7 During the Medicare demonstration project (1980–1982), 93% of
home hospice patients had cancer of various types.
Adults younger than 34 years of age and pediatric patients account for less than 1%
of the hospice population. Although pediatric hospice programs are growing, and
more pediatric patients receive hospice services, the percentage of patients in this
population has not increased from 2006 to 2013.
10 Regulatory, financial, cultural, and
educational barriers play a role in diminished access to hospice care for pediatric
10,11 States are required to offer hospice care (under Medicaid and other state
programs as part of the Affordable Care Act) to pediatric patients with expanded
benefits to improve coordination of care.
About 84% of hospice patients were 65 years of age or older, and 41.2% were 85
years or older and in 2013, 87.2% of hospice patients received this care as a benefit
provided by Medicare. Almost all (92.7%) hospice programs are certified by the
Centers for Medicare and Medicaid Services to provide care to beneficiaries under
The Medicare Hospice Benefit is funded from Part A (the hospital portion) of
13 Patients are eligible for this benefit if, in the opinion of two physicians
(i.e., patient’s primary-care physician and hospice medical director), the natural
course of their disease will result in death within 6 months. The hospice medical
director determines the terminal diagnosis and any other conditions related to the
terminal prognosis. Eligibility for hospice can continue beyond the initial
certification if the hospice medical director recertifies eligibility at defined intervals,
called certification periods. Other insurance payers generally follow this criterion. In
electing this benefit, patients agree to relinquish their regular Medicare benefits as
they relate to the terminal illness and related conditions and accept the palliative
rather than curative approach that will be provided by hospice. This benefit links all
care related to these diagnoses to the selected Medicare-certified hospice program,
which coordinates and provides all care. The regulatory framework for the provision
of hospice care under Medicare is defined in 42 CFR Part 418, Medicare and
Medicaid Programs: Hospice Conditions of Participation.
Hospice care is provided (and reimbursed) under Medicare at four levels, all of
which can be modified at any time based on a patient’s condition or caregiving
Routine home care (day-to-day care in the home)
Continuous home care (when more skilled care in the home is required owing to
symptom management or a caregiving crisis)
General inpatient care (reimbursement for an inpatient stay in a hospital or skilled
nursing facility related to symptoms that cannot be managed in the home)
Inpatient respite care (up to 5 days in a skilled nursing facility) to give the caregiver
Most care, consisting of pain and symptom management and assistance with
activities of daily living, as well as psychosocial support, is provided to hospice
patients at the routine level of care.
Patients may freely visit their primary-care provider (i.e., physician or nurse
practitioner) for any reason, including reasons unrelated to their terminal illness. The
primary-care provider will be paid directly by Medicare. Patients may choose to use
their regular Medicare benefits for other unrelated illnesses; visits to providers for
care or treatments unrelated to the primary hospice diagnosis are not limited or
restricted. Patients may revoke their election of the Medicare Hospice Benefit at any
time (e.g., end hospice care to pursue curative treatment or seek treatment outside the
hospice plan of care). Patients may, at a later date, choose to return to hospice care
or change to a different hospice program, without restrictions or loss of benefits.
It is common for patients to be referred to hospice when death is imminent. Median
lengths of stay have declined, from 37.1 days during the Medicare demonstration
project (1980–1982) to 26 days in 2005 and to 18.5 days in 2013.
34.5% of patients admitted to a hospice program in 2013 died or were discharged
Hospice programs have historically received a fixed daily payment to provide all
care related to the terminal diagnosis (e.g., medications, supplies, durable medical
equipment, procedures, home health aides, provider visits, spiritual care,
bereavement services). The reimbursement rates for the four levels of hospice care
under the Medicare Hospice Benefit are established each summer for the following
fiscal year, effective October 1.
15 A baseline reimbursement rate is set, along with an
adjustment for wage differentials (the wage index) based on the local cost of
15,16 As an example, Table 6-1 shows reimbursement rates for the provision of
routine home care in San Francisco, CA, and Jefferson City, MO, for fiscal year
2016 up to December 31, 2015. Historically, hospice reimbursement rates have been
low and have not kept pace with rising costs. The total unadjusted hospice daily
payment rate increased from $146.63 per day to $161.89 per day from 2011 to 2016
(approximately 2.1% per year).
Example of Hospice Daily Payment Rates for Routine Level of Care, 2016
Fiscal Year (October 1, 2015–September 30, 2016)
$161.89 $50.66 $111.23 1.7260 $191.98 $242.64
$161.89 $50.66 $111.23 0.9366 $104.18 $154.84
Programs generally have high costs at the start of care because of personnel costs
involved in the admission, assessment, and development of the initial plan of care,
and obtaining medications, medical equipment, and medical supplies. High costs are
also encountered nearer to the end of life, when new problems can appear and
symptoms often intensify. The Centers for Medicare and Medicaid Services are
implementing hospice payment reform beginning January 1, 2016, consisting of
higher payments at the start of care (for days 1–60) and near the end of life via a
service intensity add-on (SIA) to account for greater care needs during these
It is anticipated that future reforms may include differing payments based
on where the beneficiary resides (home versus a facility), including hospice care in
Medicare Advantage plan coverage, or on the type of care provided, on quality
outcomes, and on expanding the definition of what is related to the terminal
Drug costs continue to outpace increases in hospice reimbursement.
overall drug spending in the United States increased 13.1% due primarily to
increased prices for brand, niche ,and specialty drugs; increases in prices for
compounded medications; and shortages resulting from industry consolidation. Prices
for drugs for pain and inflammation increased by 15.7% in 2014. This is attributed by
Express Scripts in part to new tamper-resistant formulations where there is no
In reviewing hospice beneficiary use of Medicare Part D, CMS has reminded
Medicare Part D Plans, pharmacies, and hospices that hospices are required to pay
for virtually all care (including all related medications) for hospice patients (via Part
A). An initiative to block Part D access to hospice patients was subsequently
reversed by CMS with the clear expectation that hospices provide analgesics,
antiemetics, laxatives, and anxiolytics and to coordinate drug coverage with the Part
20–22 Hospices are allowed to establish formularies, but if the hospice does
not provide a related medication for any reason, the beneficiary may not use their
Part D plan to obtain it. The result has been hospices paying for many more
medications than in the past (i.e., covering medications used to treat rather than just
These variables (i.e., referrals to hospice later in the course of terminal illness,
higher costs at the start of care, shortened lengths of stay, higher drug costs, providing
more medications) have placed intense pressure on hospice programs to manage
expenses. Because it is difficult to influence the time when patients are referred to
hospice, the duration of time in hospice care, or the inherently higher costs when
patients are first enrolled into hospice, the management of drug costs has taken a high
priority in providing cost-effective hospice care.
Improving Patient Care and Managing Drug Costs
In 2008, the Hospice Conditions of Participation were updated to be more patient
centered and outcome oriented.
13 Coverage of medications is mandated as described
in 24 CFR §418.106 Drugs and biologicals, medical supplies, and durable medical
equipment: “. . .drugs and biologicals related to the palliation and management of the
terminal illness and related conditions, as identified in the hospice plan of care, must
be provided by the hospice while the patient is under hospice care.”
It also addresses medication management and the review of the medication profile
specifying that “[t]he hospice must ensure that the interdisciplinary group (IDG)
confers with an individual with education and training in drug management as defined
in hospice policies and procedures and State law . . . to ensure that drugs and
biologicals meet each patient’s needs.”
The regulations state that the comprehensive assessment must “take into
consideration” the drug profile (24 CFR §418.54). This is defined as “[a] review of
all of the patient’s prescription and over-the-counter drugs, herbal remedies and
other alternative treatments that could affect drug therapy” and is to include the
Actual or potential drug interactions
Drug therapy currently associated with laboratory monitoring
Although the regulations do not specify who is to perform the medication
assessment, pharmacists are uniquely qualified to fill this role.
Well-trained pharmacists can improve patient care and positively affect the fiscal
margins of hospice programs by discouraging inappropriate use of medications,
establishing evidence-based formularies, promulgating prior authorization policies
for specific targeted drugs, establishing policies for adhering to the use of generic
drugs, and managing the quantities of medications to be dispensed. In addition to
managing drug expenditures, pharmacists provide drug information both to patients
and providers and work integrally with other members of the hospice health care
team to improve the safe and effective use of medications.
QUESTION 1: M.P. is an 89-year-old woman referred to hospice for end-stage Alzheimer dementia. She
coronary artery disease, chronic obstructive pulmonary disease (COPD), hypercholesterolemia, and
Patients with chronic diseases (e.g., Alzheimer disease, Parkinson disease, stroke,
heart failure, lung disease) can be sufficiently ill and debilitated to need custodial
care, but might not be sufficiently ill to meet the definition of a terminal illness. This
differentiation between terminally ill versus chronically ill requiring custodial care
is important because to qualify for hospice services under the Medicare Hospice
Benefit, patients must be at a stage where death is expected within the next 6 months.
For cancer diagnoses, the presence
of widespread metastatic disease may make this prognosis more easily evident.
However, for other chronic diseases, this is not as clear.
The Medicare fiscal intermediaries have issued criteria to assist in the
determination of eligibility for hospice care, as well as criteria to meet a 6-month
terminal prognosis for a number of diseases. These criteria, or local coverage
determinations (LCDs), provide guidelines for meeting an overall decline in clinical
status, for meeting non–disease-specific data to establish a baseline, for establishing
the effect of comorbidities (e.g., renal failure, liver disease), and for the submission
of documentation for having met criteria. Criteria have been established for patients
with cancer and non-cancer diagnoses, and these criteria are used in the
determination of eligibility for service and reimbursement.
cancer diagnoses have been developed for amyotrophic lateral sclerosis, dementia as
a result of Alzheimer disease and related disorders, heart disease, human
immunodeficiency virus disease, liver disease, pulmonary disease, renal disease,
stroke, and coma. Patients with cancer are eligible if they present with metastatic
disease or progression from an earlier stage to metastatic disease with either a
continued decline in spite of therapy or if they decline further disease directed
The determination of whether M.P. meets eligibility requirements for Medicare
Hospice Benefits must be based on the established LCDs for dementia as a result of
Alzheimer disease. These criteria include the following:
Stage 7 or beyond, according to the Functional Assessment Staging Scale
Stage 7A: Can speak six or fewer intelligible words in a day or during an
Stage 7B: Speech ability limited to the use of a single intelligible word in a day
Stage 7C: Cannot ambulate without assistance
Stage 7D: Cannot sit up without assistance
Stage 7E: Loss of ability to smile
Stage 7F: Loss of ability to hold head up independently
Unable to ambulate without assistance
Unable to dress without assistance
Unable to bathe without assistance
Urinary and fecal incontinence, intermittent or constant
No consistently meaningful verbal communication; stereotypical phrases only or the
ability to speak is limited to six or fewer intelligible words
One of the following within the past 12 months: aspiration pneumonia,
pyelonephritis, septicemia, decubitus ulcers (multiple, stages 3 and 4), fever
(recurrent after antibiotic treatment)
Inability to maintain sufficient fluid and caloric intake with 10% weight loss during
the previous 6 months or serum albumin less than 2.5 g/dL
The Palliative Performance Score (PPS) (Table 6-2) gradates the extent of
disability and can be used to assist in the determination of hospice eligibility.
meets the previous criteria and is eligible for hospice because of her Alzheimer
disease. She clearly is debilitated. She is unable to speak intelligently, cannot feed
herself, is not oriented to time or place, is incontinent of urine and stool, has lost
about 20% of her weight during the past year, has a serum albumin of 2.2 g/dL, and
has a PPS rating of 30% (i.e., totally bed-bound, unable to do any activity, confused).
In addition, she has a number of comorbidities, experienced a recent episode of
aspiration pneumonia, and finished a course of antibiotic therapy.
CASE 6-1, QUESTION 2: M.P. has no known allergies. Her current medications are memantine 10 mg
related to M.P.’s terminal prognosis. What is your assessment of M.P.’s medication regimen? Which
medications are the hospice required to provide, and which might be discontinued?
Hospices are required to provide (pay for) all medications related to the terminal
diagnosis and related conditions within the hospice plan of care (POC). The POC is
the individualized plan of treatment developed for each patient formulated at the start
of care and updated regularly by the IDG. The Conditions of Participation mandate
that the IDG be composed of a physician, registered nurse, social worker, and a
13 A registered nurse coordinates the implementation of
the POC. Some hospice program IDGs have incorporated a pharmacist into the group
The large array of medications being taken by M.P. is similar to the medication
lists of many hospice patients. These patients are often elderly and have a long
history of several chronic medical conditions for which they have been taking
multiple medications. In most cases, the medication lists of patients who are admitted
into a hospice program have seldom been reviewed, updated, or modified in light of
the present medical situation. Admission to a hospice program represents a change in
the level of care and is a most appropriate time for a review and reconciliation of all
medications to ascertain the necessity of each, with the goal of optimizing efficacy
and minimizing the potential for adverse effects, medication errors, and inappropriate
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