March 2013

The Center Healthcare at the End of Life:

for Health Affairs Issue Brief
A Look at Current Trends

The Leading Advocate for Northeast Ohio Hospitals

 The Leading Advocate for Northeast Ohio Hospitals

In this Issue Brief

Acknowledgements...................................................................................................2

End of Life Care..........................................................................................................3

The Role of Advance Directives.................................................................................4

Palliative and Hospice Care........................................................................................5

Historical Context for End-of-Life Care......................................................................5

Hospice Care in the Present Day...............................................................................7

Who Utilizes Hospices?..............................................................................................8

What Does a Patients Hospice Experience Look Like?.............................................8

Hospice Programs in the U.S.....................................................................................9

How is Hospice Care Paid For?................................................................................10

Cost Savings Associated with Palliative & Hospice Care.........................................11

Advancing End-of-Life Care......................................................................................12

Some Challenges Remain........................................................................................15

Tools for Documenting Our Wishes.........................................................................17

What Can You Do?...................................................................................................19

Suggestions for Stakeholders...................................................................................20

Endnotes..................................................................................................................21

Issue Brief 1
The Center
for Health Affairs

Acknowledgements
This issue brief was written by Michele Egan Fancher, freelance health writer,
and Deanna Moore, vice president, Corporate Communications.
Bill Ryan, president and CEO, provided invaluable insight and comments.

Special thanks are also extended to the staff of The Center for Health Affairs:
Julie Cox, director, marketing; Luisa Barone Gantt, specialist, digital marketing;
Earnest Law, assistant manager, facilities; Chris Nortz, director, facilities;
and Beverly Cash, receptionist.

2 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

Healthcare at the End of Life:

A Look at Current Trends

End of Life Care

Attention to end-of-life care has waxed and waned over the years. On occasion, in-
dividual patients have come under the bright spotlight of the media as their loved
ones have grappled with decisions regarding their care. Usually this has happened
because the absence of clear guidance from the patient has resulted in confusion
and differences of opinion among that persons loved ones regarding his or her
wishes. During these times, of course, the challenges and complexities surround-
ing medical treatment at the end of life, or under circumstances when a patient is
unable to make decisions for him- or herself, receive significant public awareness
and discussion.

Understanding our options and having our wishes documented is so important. It

ensures that we receive the care that we desire, and it eases the minds of those
who love us by allowing them to also feel confident our wishes are being respect-
ed. April 16 marks National Healthcare Decisions Day, an initiative to encourage
patients to express their wishes regarding healthcare and for providers and facili-
ties to respect those preferences, whatever they may be.1 There is no better time
to think about our wishes for our own healthcare and to talk with our loved ones
about what we want for ourselves and also about their thoughts and preferences
are for their own care.

A variety of tools are available to help put wishes to paper, and healthcare re-
sources are available to help patients and their loved ones with care and other
needs at the end of life. This paper is intended to shed light on some of the aspects
of the healthcare system that many of us may not yet have encountered and also
to provide specific tools that we can use to help ensure our wishes for care are
documented and available should the need arise.

Issue Brief 3
The Center
for Health Affairs

The Role of Advance Directives

Advance directives play an important part in ensuring a
patients wishes are known even when he or she has
become unable to express them. An advance di-
rective is a document that patients complete,
ideally before they become ill or injured,
to direct their medical care when they
are unable to communicate their own
wishes due to a medical condition. In
Ohio, do-not-resuscitate orders, living
wills and durable powers of attorney are
advance directives that are authorized by
state law.2

Just as their name suggests, do-not-resuscitate orders express the wishes of pa-
tients who want to forego cardiopulmonary resuscitation (CPR) or other resuscita-
tive efforts in the event of cardiac arrest.3 A living will is a legal document intended
to guide providers on the desired medical care in cases when the individual is
terminally ill and unable to articulate his or her own wishes. Living wills can be very
general or they can include more specific information regarding a patients prefer-
ences, for example, for such services as pain relief, antibiotics, artificial hydration
and feeding, and ventilators.4

Healthcare durable power of attorney is a document in which an individual selects

someone, often referred to as a healthcare proxy, to make healthcare decisions
for them in the event they become incapacitated. The healthcare proxy has, in
essence, the same rights to request or refuse treatment that the individual would
have if capable of making and communicating decisions.5 A healthcare durable
power of attorney does not spell out a patients wishes with respect to their care,
which is why it is important for patients to also have a living will or other documen-
tation of their wishes to assist in guiding their caregivers and healthcare proxy.6

Durable power of attorney can also encompass more than healthcare decision
making. Depending on what a patient has chosen, it can designate an individual to
make bank transactions, sign social security checks, apply for disability, or simply
write checks to pay utility bills while an individual is medically incapacitated. Du-
rable power of attorney can also specifically designate different individuals to act
on a persons behalf for specific affairs. For example, one person can be chosen for
the healthcare or medical portion while another individual can given the power of
attorney designation for legal matters.7

4 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

Palliative and Hospice Care

Advance directives are indispensable tools that can ensure that our loved ones
and healthcare providers understand our preferences for medical care. As we
think about and work to document our wishes, it may be helpful to understand
some of the healthcare resources that are available to us, including both hospice
and palliative care. While there is some overlap, these two terms are somewhat
distinctive.

Palliative care is a category of healthcare that not only treats physical symptoms,
but also addresses the emotional, social, spiritual, psychological and cultural needs
of patients.8 Palliative care is focused on improving quality of life for patients with
serious illness. Its major areas of expertise include pain and symptom manage-
ment and communication about goals of care.9

While palliative care often refers to services provided at the end of life, it doesnt
exclusively serve the dying. It focuses on improving quality of life and providing
comfort to people of all ages with serious, chronic, and life-threatening illnesses,
such as cancer, congestive heart failure, kidney failure, chronic obstructive pulmo-
nary disease, and Alzheimers disease, among others.10 Palliative care is usually
delivered by a team of medical professionals that includes doctors, nurses, social
workers, registered dietitians, chaplains, and other therapists as needed based on
the patients condition. Palliative care can be delivered at the same time as life-
prolonging or curative care.

Hospices are healthcare providers that have been certified by the federal govern-
ment through the Medicare program to provide services to patients who, based
on their medical condition, are expected to live six months or less. The focus of
hospice is on providing palliative care; hospices do not provide curative care. Hos-
pice care can be delivered in a variety of settings, from the patients home, to a
nursing home, hospital, hospice center or other healthcare facility. Hospice care
provides pain management and symptom control, as well as a variety of support-
ive services for patients and their caregivers and loved ones, including bereave-
ment services for loved ones after the patients death.

Historical Context for End-of-Life Care

Today, hospice care is available in all 50 states and in fact in 2011 there were more
than 5,300 hospice programs nationwide.11 Todays prevalence and accessibility of
hospice care were not always present, however. The modern concept of hospice
care was pioneered by three women in the United States and United Kingdom in
the middle of the 20th Century.

Issue Brief 5
The Center
for Health Affairs

In 1963, U.K. physician Dame Cicely Saunders, who had been working with the ter-
minally ill for nearly 20 years, introduced to the United States the idea of special-
ized care to the dying during a visit to Yale University. Four years later, she opened
the first modern hospice St. Christophers Hospice in the U.K. The following
year, the dean of the Yale School of Nursing, Florence Wald, took a sabbatical to
work at St. Christophers and learn all she could about hospice. Six years later,
Wald, along with two pediatricians and a chaplain, opened Connecticut Hospice,
the first in the United States, in 1974 in Branford, Conn.12

While this was happening, Elisabeth Kubler-Ross, MD, was developing her well-
known book, On Death and Dying. Published in 1969, the book is based on more
than 500 interviews with dying patients, and in it Kubler-Ross identified what are
known as the five stages of grief through which terminally ill patients progress. In
the book, she also made a plea for patients to be cared for at home, rather than
in an institutional setting, and argued that patients should have choices and the
ability to participate in decisions regarding their care.13

Cicely Saunders Florence Wald at Elisabeth Kubler-Ross

with a patient National Womens Hall
of Fame Induction

In 1974, the year the Connecticut Hospice opened, policymakers began to grapple
with the issue of hospice care. That year, legislation was introduced in Congress
to provide federal funds for hospice care, but it was not enacted. Five years later,
in 1979, the Health Care Financing Administration, which is now known as the
Centers for Medicare & Medicaid Services, launched demonstration projects at
26 hospices across the country. The goals of the projects were to assess the cost
effectiveness of hospice care and to help determine what hospices are and what
services they should provide.14

In 1982, Congress included in a broader piece of legislation a provision to cre-

ate a Medicare hospice benefit, enabling providers to be reimbursed for hospice
care for Medicare enrollees. Under the legislation, the benefit would have ended
in 1986, but that year through additional legislative action the Medicare hospice
benefit was made permanent by Congress. States were also given the option of
including hospice in their Medicaid programs.15

6 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

Five years later, in 1991, the Patient Self-Determination Act was enacted. Under
this law, healthcare providers though not individual doctors are required to ask
patients at the time of admission whether they have an advance directive. Provid-
ers are also required to furnish patients with information about their healthcare
decision-making rights.16

In the mid- to late-1990s, legal activity brought a heightened awareness to issues

related to end-of-life care. Laws against physician-assisted suicide in New York and
Washington states were struck down by federal circuit courts in 1996. Both rul-
ings were appealed to the U.S. Supreme Court, which decided the following year
that mentally competent terminally ill people do not have a constitutional right to
physician-assisted suicide, leaving the issue up to individual states to decide. That
same year, Oregon voters passed the Death with Dignity Act, affirming the right
to physician-assisted suicide in that state. In 2002, the law was upheld in federal
court.17

The issue again grabbed the political spotlight in 2009 during the debate over na-
tional healthcare reform legislation. The bill initially contained a provision that
would have allowed payment by Medicare for time spent by physicians on ad-
vanced care planning consultations. Specifically, under this provision a physician
would have been reimbursed for talking with a Medicare patient, at the patients
request, once every five years about what kind of care he or she would like near
the end of life.18 Amid outcry, spurred by mischaracterization about what the pro-
vision actually included, the language was stripped from the legislation.

Hospice Care in the Present Day

Utilization of hospice care has grown steadily over the years. In 2011, an estimated
1.65 million patients received services from hospice. That same year, an estimated
44.6 percent of all deaths up from 31.5 percent in 2004 in the United States
were under the care of a hospice program.19

1,800,000
Patients Served by Hospice in the U.S.: 1982-2010
1,600,000 1,580,000

1,450,000
1,400,000
1,300,000
1,200,000

1,060,000
1,000,000
885,000
800,000
700,000
600,000
540,000

400,000 450,000

210,000 340,000
167,000
200,000 246,000
25,000 181,000
100,000
-
1982 1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010

Source: National Hospice and Palliative Care Organization

Issue Brief 7
The Center
for Health Affairs

Who Utilizes Hospices?

While hospice services are available to patients at any age who need them, most
of those receiving hospice care are over age 65. In 2011, 83.3 percent of hospice
patients were 65 years of age or older, and nearly 40 percent were 85 years of age
or older.20

As the utilization of hospice ser-

vices has grown over the years,
Primary Diagnosis, 2011
the diagnoses of hospice pa-
tients have also changed consid- Cancer 37.7%
erably. When hospice care was Non-Cancer Diagnoses 62.3%
established in the United States Debility Unspecified 13.9%
in the 1970s, cancer patients Dementia 12.5%
made up the large majority of
Heart Disease 11.4%
hospice admissions. In 2011,
cancer diagnoses accounted for Lung Disease 8.5%
just 37.7 percent of admissions. Other 4.8%
Currently, fewer than 25 percent Stroke or Coma 4.1%
of U.S. deaths are now caused
Kidney Disease 2.7%
by cancer, with the majority of
deaths due to other terminal Liver Disease 2.1%
diseases. Correspondingly, the Non-ALS Motor Neuron 1.6%
top three non-cancer primary Amyotrophic Lateral Sclerosis (ALS) 0.4%
diagnoses for patients admitted HIV / AIDS 0.2%
to hospice in 2011 were demen-
Source: National Hospice and Palliative Care Organization.
tia (12.5 percent), heart disease NHPCO Facts and Figures: Hospice Care in America. 2012.
(11.4 percent), and lung disease
(8.5 percent).21

What Does a Patients Hospice Experience

Look Like?
Most hospice patients 66.4 Location of Death 2011 2010
percent in 2011 receive their Patients Place of Residence 66.4% 66.7%
care in the place they call home.
In addition to private residences, Private Residence 41.6% 41.1%
this can include nursing homes Nursing Home 18.3% 18.0%
and residential facilities. In 2011, Residential Facility 6.6% 7.3%
26.1 percent of hospice patients Hospice Inpatient facility 26.1% 21.9%
received their care in a hos-
Acute Care Hospital 7.4% 11.4%
pice inpatient facility. This was
up from 21.9 percent the prior Source: National Hospice and Palliative Care Organization.
NHPCO Facts and Figures: Hospice Care in America. 2012.
year.22

8 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

There is quite a bit of variation in the length of time that patients use hospice ser-
vices. In 2011, a little more than a third 35.8 percent of patients were under
the care of a hospice program for a week or less. Another 27 percent received hos-
pice services for between eight and 29 days. Under the Medicare program, which
covers the wide majority of hospice patients, those with a prognosis of six months
or less are eligible for the Medicare hospice benefit. Determining prognosis can
sometimes be difficult, however, and in 2011, 11.4 percent of hospice patients
received care for more than 180 days.23

Proportion of Patients by Length of Service, 2011

180 + days
11.4%
90 - 179 days
8.7%
< 7 days
35.8%

30 - 89 days
17.2%

8 - 29 days
27.0%

Source: National Hospice and Palliative Care Organization, Facts and Figures, 2012

Hospice Programs in the U.S.

The number of hospice programs nationwide continues to increase. Even in just
the last few years, hundreds of new programs have begun serving patients. In
2007, there were about 4,700 hospice providers nationally, a number that rose to
5,300 by 2011. While a significant portion of hospice services are delivered in pa-
tients homes, about one
in five hospice agencies
also operates a dedi- Agency Type, 2011
cated inpatient unit or Free-Standing / Independent Hospice 57.5%
facility. Most of these Part of a Hospital System 20.3%
facilities are either free-
standing or located on a Part of a Home Health Agency 16.8%
hospital campus and may Part of a Nursing Home 5.2%
provide a mix of general Source: National Hospice and Palliative Care Organization.
inpatient and residential NHPCO Facts and Figures: Hospice Care in America. 2012.
care.24

Issue Brief 9
The Center
for Health Affairs

Just as the location of hos-

pice services varies, the size Total Hospice Patient Admissions, 2011
of programs is also some- 1 to 49 15.4%
what diverse. In 2011, more
50 to 150 29.3%
than 60 percent of hospice
programs admitted between 151 to 500 34.2%
50 and 500 patients. About 501 to 1,500 16.7%
20 percent of programs ad- >1,500 4.4%
mitted more than 500 pa- Source: National Hospice and Palliative Care Organization.
tients that year and 15.4 NHPCO Facts and Figures: Hospice Care in America. 2012.
percent admitted fewer than
50.25

How is Hospice Care Paid For?

As stated above, the majority of hospice patients are age 65 or older, meaning
they qualify for Medicare. In 2011, 84 percent of hospice patients had their care
paid for by Medicare. Another 7.7 percent of patients receiving hospice care were
covered by managed care or private insurance and 5.2 percent were covered by
Medicaid. The remaining hospice services were categorized as self pay or paid for
by some other source, or they were uncompensated or charity care.26

In order for a patients care to be paid for under the Medicare hospice benefit,
two separate physicians must determine the patients prognosis to be six months
or less and the patient must also agree to forgo curative treatment for his or her
terminal illness. Eligibility for the Medicare hospice benefit is certified in periods
of care: for two 90-day periods and then for an unlimited number of 60-day peri-
ods. The benefit is of unlimited duration as long as the patient continues to meet
eligibility requirements.27 Since January 2011, a provision of the Affordable Care
Act has required that a hospice physician or nurse practitioner have a face-to-face
encounter with each hospice patient before the 180th day of care the six-month
mark and at each subsequent recertification to document the patients ongoing
eligibility for the Medicare hospice benefit. Reimbursement is withheld until this
encounter takes place.28

Hospice providers are reimbursed at an all-inclusive per diem rate for care related
to the terminal illness. The four levels of hospice care routine home care, gen-
eral inpatient care, respite care and continuous care each have their own per
diem rate. The routine home care rate, at which more than 96 percent of all Medi-
care hospice patients are billed, is about $153 per day in 2013.29 To encourage
providers to limit the length of use of hospice services to six months before death,
Medicare caps aggregate hospice agency payments at a per-beneficiary amount
multiplied by the hospices number of enrollees.30

10 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

Cost Savings Associated with Palliative &

Hospice Care
When the Medicare hospice benefit was established by Congress in the 1980s, it
was expected that hospice enrollees, who had agreed to forgo curative care for
their terminal illness in order to be eligible for the hospice benefit, would have
fewer hospitalizations at the end of life. This would allow the cost of the benefit to
be offset by reduced costs for inpatient hospital care.31 In fact, the use of palliative
care and hospice services does seem to produce savings on inpatient care.

One study of four hospitals in New York State found a significant decrease in hos-
pital costs associated with the use of palliative care teams. Patients who received
palliative care incurred $6,900 less in hospital costs, on average, during a given ad-
mission than patients who received usual care. The study also found that patients
receiving palliative services spent less time in intensive care, were less likely to die
in intensive care units, and were more likely to receive hospice referrals than the
matched usual care patients, all of which tend also be consistent with the wishes
of patients and their loved ones.32

Another study found that the use of emergency departments (ED) was lower in
hospice patients. This produces cost savings and, arguably even more important,
creates a more peaceful experience for patients near the end of life. The study of
older adults found that 75 percent visited an emergency department at least once
in the six months before they died and half did so in their last month of life. ED us-
age for these patients often resulted in hospitalization, frequently in an intensive
care unit. Of those who visited the ED in the last month of life, 77 percent were
admitted to the hospital. Of those hospitalized, 39 percent were admitted to an
intensive care unit and 68 percent died in the hospital. In this study, only 9 percent
of those who died had enrolled in hospice before the last month of life.33

In the same study, early enrollment in hospice, considered by study authors to

be more than one month before death, was found to be strongly associated with
decreased emergency department usage. Early enrollment was associated with 80
percent less use of the emergency department in the last month of life and dra-
matically reduced rates of hospitalization and of death in the hospital, compared
to the rates for patients who did not enroll early.34

Issue Brief 11
 The Center
for Health Affairs
The Institute of Medi-
cine is the health arm
of the National Acad-
emy of Sciences, a
nonprofit organization
that works outside of
government to pro-
vide unbiased advice
to decision makers
and the public.
12
Advancing End-of-Life Care
The development and continued evolution of hospice care in this country over the
last 40 years has brought with it great progress in the care terminally ill patients
receive. But challenges associated with care for the dying still exist. Some of these
are a reflection of the difficulty on the part of both the medical community and
patients to identify and accept the point at which further medical intervention is
unlikely to either achieve a cure or extend survival, and to plan for patients con-
tinued care after that point.
For many years, during the 1970s and 1980s, before palliative and hospice care
became more widely understood and available, death and dying were commonly
viewed within the medical field as failure failure on the part of technology and
available treatment to cure or to prolong life. Unable to provide a cure, healthcare
providers were often at a loss when it came to continued care for patients.35 As
the field of palliative care grew, a shift in perspective began to occur regarding ter-
minal illness. There were many developments that converged to create this shift,
including the policy initiatives and court decisions mentioned above as well as the
involvement of some high-profile private organizations.
One such institution that drew attention to the challenges associated with end-of-
life care in the mid-1990s was the Institute of Medicine, which published a report
in 1997 called Approaching Death: Improving Care at the End of Life. The objec-
tive of the studys authors was to improve the understanding of end-of-life care
among both healthcare professionals and the general public in order to ultimately
improve care for those at the end of life.36
As stated by the authors of the report, their goal for end-of-life care was to al-
low people to experience a death free from avoidable distress and suffering for
patients, families, and caregivers; in general accord with patients and families
wishes; and reasonably consistent with clinical, cultural, and ethical standards.
The report acknowledged
that much was being done
well but that there were
also opportunities for im-
provement. The authors
contended that there were
significant gaps in the
knowledge base regarding
end-of-life care and that
more and better research
is needed to increase our
understanding of the clini-
cal, cultural, organizational,
and other practices or per-
spectives that can improve care for those approaching death. They also found
there to be legal, organizational, and economic obstacles obstructing the provision
of reliably excellent care at the end of life.37
Healthcare at the End of Life: A Look at Current Trends
 The Leading Advocate for Northeast Ohio Hospitals

More than 15 years after the release of this 1997 report, the IOM has returned
to the issue of end-of-life care. In January of this year, the IOM announced the
formation of the Committee on Transforming End-of-Life Care, which met for the
first time February 20. The intent is for the committee to examine the current
state of end-of-life care with respect to delivery of medical care and social sup-
port; patient-family-provider communication of values and preferences; advance
care planning; healthcare cost, financing and reimbursement; and education of
health professionals, patients and their loved ones. The study will also explore
approaches to advance the issues surrounding the end of life from a wide variety
of perspectives including clinical care and delivery, resources and workforce, eco-
nomics, spirituality and compassion.38 The results are expected to be released in
spring 2014.39

In the interim years between the IOMs last report and their current project, much
has been accomplished. The Robert Wood Johnson Foundation (RWJF) is one or-
ganization that can be credited with spurring progress in a significant way during
that time through an extensive grant program. For their focus on grant making for
end-of-life care initiatives, the foundation identified three primary objectives:

Improving the knowledge and capacity of healthcare professionals and others

to care for the dying.

Improving the institutional environment in healthcare institutions and in pub-

lic policies and regulatory apparatus to enable better care of the dying.

Engaging the public and professions in efforts to improve end-of-life care.

Between 1996 and 2005, RWJF made 337 grants and invested $170 million in
initiatives related to end-of-life care. The foundation funded programs all across
the country that had wide-ranging approaches to improving end-of-life care, from
educating physicians and nurses, to researching Americans values regarding end-
of-life care to removing barriers to enhanced care at the end of life.40

Substantial changes occurred during and following the RWJFs grant period. In
2006, the American Board of Medical Specialties (ABMS) approved hospice and
palliative medicine as a medical subspecialty. Two years later, following the first
exam in 2008, 1,271 physicians received subspecialty certification. Also in 2008,
the Centers for Medicare & Medicaid Services (CMS) followed the ABMS by recog-
nizing the specialty, a precursor to approving payment for service. In 2008 1,300
or nearly 31 percent of all hospitals nationally reported having palliative care
programs. Of hospitals with 50 or more beds, 58 percent offered palliative care
and this rose to 81 percent of hospitals with 300 or more beds.41

Issue Brief 13
The Center
for Health Affairs

A program in Greater Cleveland benefited from the Robert Wood

Johnson Foundations focus on end-of-life care during the late
1990s and early 2000s. In 1998, Case Western Reserve University
received $450,000 in RWJF funding for a collaborative inter-agen-
cy program to improve end-of-life care for cancer patients and
their families. The initiative, called Project Safe Conduct, aimed
to improve access to comprehensive palliative care across a full
range of clinical settings for patients with a terminal prognosis.42

Participants in the initiative included Case, the Hospice of the Western Reserve and the Ireland Cancer Center
at University Hospitals. Safe Conduct was defined as the dimension of care that guides a patient through a
maze of uncertain, perplexing and distressing events. Safe Conducts overarching goal was to eliminate the
artificial boundaries separating acute care from end-of-life care by providing safe conduct for patients with
terminal illnesses. Safe Conduct served 221 patients with advanced lung cancer between 1998 and 2003.

Results of the project were as follows:

In 1997, prior to the projects inception, 13 percent of advanced lung cancer patients at Ireland Cancer Cen-
ter were receiving either hospice or home care services at the time of their death. At the end of the project
in 2003, 80 percent of patients who died were receiving hospice services.

The average length of time in hospice increased from 10 days in 1997 to 44 days in 2003.

The rate of admissions to Ireland Cancer Center declined by 67 percent after Project Safe Conduct began.
In the year before Project Safe Conduct began, lung cancer patients averaged 3.2 hospital admissions.
Starting one year after Project Safe Conduct and every year thereafter, lung cancer patients averaged
1.05 admissions per year.43

More recently, another high-profile organization published a report evaluating

end-of-life care in the U.S. In April 2011, Dartmouth Atlas, which for a number
of years has been conducting studies of the healthcare system focusing primarily
on the Medicare population, released the report Trends and Variations in End-
of-Life Care for Medicare Beneficiaries with Severe Chronic Illness. The report,
which examined changes in end-of-life care between 2003 and 2007, found ad-
ditional progress has been made, but there are still opportunities for improve-
ment. According to the study, patients experienced fewer hospital days and more
hospice care. However, at the same time there was an increase in the intensity of
care for patients who were still hospitalized. The report also found widespread
regional variation in end-of-life care.44 It is important to bear in mind, however,
that end-of-life care should reflect the wishes of patients, and while many patients
opt for less medical intervention, some choose to make use of all of the options
that are available to them.

14 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

The Dartmouth Atlas study found that, overall, the average patient spent slightly
fewer days in the hospital during the last six months of life in 2007 than in 2003,
as the national rate dropped slightly, from 11.3 to 10.9 hospital days per patient.
However, at the same time, patients spent slightly more time in intensive care
units in 2007 than in 2003, as the average number of intensive care days increased
from 3.5 to 3.8. More significant improvement was made in the utilization of hos-
pice care. Nationwide, the average number of hospice days per patient in the last
six months of life increased substantially, from 12.4 days to 18.3 days. The study
also found that from 2003 to 2007, the likelihood that a chronically ill Medicare
beneficiary died in a hospital declined steadily each year, from 32.2 percent of
such patients to 28.1 percent. There was also a slight decline in the chance that a
chronically ill Medicare beneficiary died in a hospital during a stay that included an
admission to intensive care. The national rate declined from 18.6 percent in 2003
to 17.6 percent in 2007.45

Some Challenges Remain

The healthcare system in this country has come a long way since the 1970s in car-
ing for patients who are approaching the end of life. The promotion of advance
directives and other tools that help patients communicate and ensure their wishes
are followed has been tremendously helpful, as has been the growth and evolu-
tion of palliative and hospice care. Though advancements over the last several
decades have been considerable, evaluations of our end-of-life care system have
turned up some challenges we continue to face. These include:

Continued aggressive treatment and late referral to hospice for those patients
who could benefit from that type of care.

Difficulty predicting lifespan and pinpointing a six-month prognosis, as re-

quired by the Medicare hospice benefit.

Racial and ethnic disparities in end-of-life care.

An imperfect payment system for hospice care and the challenges it creates.

The reasons for late referral to hospice are many and complex. Sometimes this
happens because a physician is having difficulty identifying the point beyond
which intervention is unlikely to lead to improvement for the patient, or because
the physician finds it difficult to talk with the patient or loved ones about the ter-
minal nature of the illness and what the care plan should be. Other times, it is be-
cause the patient is unwilling or unable to accept the terminal nature of his or her
disease. It can also result from an absence of advance directives, or from advance
directives that are not specific enough to adequately guide clinicians and loved
ones in treatment decisions.

Issue Brief 15
The Center
for Health Affairs

Some of these factors just described seem to also play a role in disparities among
racial and ethnic groups regarding end-of-life care. Studies have found that dif-
ferent racial and ethnic groups do tend to have different experiences at the end
of life. One study found that whites were significantly more likely to have an
advanced care plan than black and Hispanic patients, with 80 percent of white
patients and 47 percent of both black and Hispanic patients having such a plan.
There was also a difference in preferences for life-prolonging care, with 14 percent
of white patients, 45 percent of black patients and 34 percent of Hispanic patients
wanting such care even when they only had a few days to live. Religion may play
a role, as might patients willingness to accept their prognosis, in partially, but not
fully, explaining these differences. Forty-four percent of white patients, 88 percent
of black patients and 73 percent of Hispanic patients said religion was important
to them. When it came to acknowledging their illness as terminal, 39 percent of
white patients, 27 percent of black patients, and 11 percent of Hispanic patients
did so.46

Other challenges with end-of-life care can be traced back to Medicare policy. The
Medicare hospice benefit went a long way in creating options for patients who are
nearing the end of life, and policymakers attempted to establish these benefits
while at the same time controlling healthcare costs. For that reason, the six month
prognosis has been the threshold that clinicians have had to abide by when rec-
ommending hospice care. However, that threshold is not without its difficulties.

While it is true that a hospice patient can receive care for an indefinite period
of time, extending even beyond six months, throughout treatment the patients
physicians must maintain that, should the disease run its expected course, the pa-
tient is likely to die within six months. The expected course, however, is not always
easy to determine for every patient and every illness. When the hospice benefit
was first created it was used primarily by cancer patients, but as illustrated above,
this is no longer the case. Many of the illnesses and conditions for which hospice
patients are receiving care today are much less predictable than cancer when it
comes to progression of the disease. For this reason, the six-month threshold for
life expectancy can be very difficult to pinpoint. Generally speaking, clinicians can
fairly accurately predict when a patient has just a few days to live, or when he or
she is likely to live for years. But in the in-between period, when the prognosis is
more like weeks or months, is much more difficult to predict with accuracy, and
this is exactly where Medicares six-month target lies.47

The provision of hospice care itself can also muddy the waters. While these pa-
tients do forgo curative care, they receive significant supportive services. For
some conditions, like the lung disease chronic obstructive pulmonary disease
(COPD), this supportive care has been shown to increase patients longevity and
may even stabilize their condition.48 This can further complicate pinpointing that
six-month threshold.

Also inherently challenging is the reimbursement system for hospice care. The
way hospice providers are paid for their services based on a per diem rate
with minimal variation or accommodation for variances among patients needs

16 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

creates problems for providers and, by extension, for patients. For example, small-
er hospices that treat fewer patients are less able to absorb costs for patients
whose care is more intensive and significantly more expensive. For this reason,
smaller hospice programs are more likely to have restrictive enrollment policies,
such as those that require patients to have family or friends who are willing to
provide ongoing care in the patients home, or those that exclude patients who are
receiving parenteral nutrition (intravenous feeding), the administration of which
is very labor intensive.49

The hospice care reimbursement system is also an imperfect fit for nursing home
patients. Often, these patients are receiving care for multiple conditions or ill-
nesses. For billing purposes, the Medicare hospice benefit requires that hospice
services be separated out from the other services nursing home residents receive,
such as Medicare-financed skilled nursing facility care and Medicaid- or privately
financed supportive services. Other complexities arise when attempting to distin-
guish between care for the terminal illness and care for other conditions. A nursing
home patient may agree to receive only supportive care for a terminal condition,
which qualifies them for hospice, and they may also opt to receive life-prolonging
treatment for another illness they may also have. But the lines among illnesses
and their corresponding treatments can be a bit blurry at times.50

To address challenges related to the reimbursement system, various suggestions

have been made. Some have argued for a separate benefit for nursing home pa-
tients.51 Others have suggested a modification in the per diem rate for patients
with more complex needs.52 Still others have proposed an altogether different
means for determining hospice eligibility. Rather than hinging the benefit on a
prognosis of six months or less, eligibility could be determined based on the pa-
tients need for supportive care, including the weight of their symptoms and their
level of functional impairment.53

Tools for Documenting Our Wishes

While a handful of patients have become nationally known for the challenges that
were encountered as their loved ones and care providers were making decisions
about their care, the truth is that every day, these issues are being raised in hos-
pitals and nursing homes across the country. The most important thing we, as in-
formed patients, or informed potential patients, can do is to document our wishes
regarding our care. This will help
to ensure that if we are ever un-
able to make decisions about
our treatment, we are cared for
in the way we would want to be.
And it helps our loved ones, who
are understandably distraught
during our health crisis, to feel
confident that we are getting
the care we want and that our
wishes are being followed.

Issue Brief 17
The Center
for Health Affairs

In Ohio, resources have been developed by a collaborative of organizations, in-

cluding the Midwest Care Alliance, Ohio Hospital Association, Ohio State Medical
Association and Ohio Osteopathic Association, specifically to help ease end-of-life
planning. Conversations That Light the Way is a workbook designed to help us
think about what is important to us and to begin sharing that information with
loved ones. It includes questions such as, how important is it to be able to care
for yourself? And, what kind of living environment would you be willing to accept?
An important companion to this workbook is the advance directives packet called
Choices: Living Well at the End of Life. Choices explains living wills, do-not-resusci-
tate orders, organ donation and healthcare power of attorney and even includes
forms that can be filled out to activate our wishes. Both the Conversations work-
book, the Choices packet, as well as other helpful resources relating to this issue
brief can be accessed at www.chanet.org in The Centers Publications section.

If you are seeking further guidance, additional tools and information have
been made available by various other organizations and can be found online at
www.caringinfo.org and theconversationproject.org.

The American Hospital Association (AHA) has also developed helpful resources
through an initiative called Put it in Writing. Once you have completed your ad-
vance directives and communicated these wishes to loved ones, it is important
that healthcare providers are aware they exist. AHA has created a card that can
be printed out and kept in your wallet that notifies healthcare providers that you
have an advanced directive and includes information about who to contact regard-
ing your care. AHA has also created a guide that provides answers to commonly
asked questions about advance directives. Both of these resources are available at
www.aha.org/putitinwriting.

Another tool, designed to be used by patients when they have become ill or in-
jured, is called Physician Orders for Life-Sustaining Treatment (POLST). Already
available in many states, this treatment protocol is also on its way to Ohio. The
POLST form and program were originally developed in Oregon in 1991 to help en-
sure that patient wishes to have or limit specific medical treatments are respected
near the end of life. POLST orders are for those with advanced chronic illness who
wish to turn some aspects of their advance directives or advance care plans into
action at the current time to ensure that their medical treatment preferences are
respected.54

POLST forms are often printed on brightly colored paper that can easily be found in
a patients medical record and contain very specific orders regarding care, includ-
ing the use of antibiotics, artificially administered nutrition, and medical interven-
tions like intubation and ventilation. POLST orders are intended to complement,
rather than replace, advance directives, and are designed to address some of the
limitations of advanced directives, including that they may not be available when
needed, may not be specific enough, and do not immediately translate into a phy-
sician order. Legislation establishing a similar protocol is expected to be introduced
in Ohio this spring and appears to have the support necessary to become law. The
program will be called Medical Orders for Life-Sustaining Treatment (MOLST) in
Ohio and will be entirely voluntary on the part of the patient.

18 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

What Can You Do?

Planning for end-of-life care can be uncomfortable and feel overwhelming. Here
are some steps you can follow to help lead you through the process.

1. Think about what kind of care you would like at the end of life or under cir-
cumstances where you may not be able to make decisions about your care.
Use the Conversations document to help spur your thinking and determine
your wishes about your treatment and care.

2. Use the Choices packet to document your wishes and to choose a healthcare
proxy.

3. Discuss your wishes with your healthcare proxy.

4. Fill out and carry with you the wallet card developed by AHA to alert health-
care providers that you have advanced directives.

5. Talk to your loved ones and encourage them to also develop their own ad-
vanced directives.

6. If you or a loved one is diagnosed with a serious chronic or terminal illness,

talk to your healthcare providers about palliative care and hospice services.

Issue Brief 19
The Center
for Health Affairs

Suggestions for Stakeholders

There are opportunities for all of us patients, clinicians and policymakers to
make positive contributions to the environment surrounding care at the end of
life.

In the coming months, when MOLST legislation is expected to be introduced in

the Ohio General Assembly, policymakers should work to ensure its passage.

Given the many layered complexities surrounding end-of-life care and the
constant change and advancements in treatments and outcomes, providers
should continue to educate themselves and their patients regarding choices
for care at the end of life. And of course patients should be sure that they have
considered and documented their own wishes, and that they have communi-
cated these wishes to loved ones.

Policymakers would do well to consider changes to both eligibility and reim-

bursement policies for hospice care, to ensure that patients continue to have
access to the most appropriate services for their own needs.

For access to in-depth information about The Centers key

initiatives, as well as links The Centers other health policy
and advocacy publications, visit www.healthpolicyissues.com.

20 Healthcare at the End of Life: A Look at Current Trends

 The Leading Advocate for Northeast Ohio Hospitals

Endnotes
1. More on National Healthcare Decisions Day can be found at www.nhdd.org
2. Ohio Hospital Association. Glossary of Health Care Terms. http://www.ohanet.org/glossary/
3. IBID
4. Nabili, Siamak T., MD, PhD. Advance Medical Directives. MedicineNet.com. http://www.medicinenet.
com/advance_medical_directives/article.htm
5. IBID
6. SeniorCareHomes.com. Advance Directive vs. Living Will. http://www.seniorcarehomes.com/legal-
and-finance/advance-directive-vs.-living-will.html
7. Nabili, Siamak T., MD, PhD. Advance Medical Directives.
8. Ohio Hospital Association. Glossary of Health Care Terms. http://www.ohanet.org/glossary/
9. Smith, Alexander K., et al. Half of Older Americans Seen in Emergency Department in Last Month of
Life; Most Admitted to Hospital, and Many Die There. Health Affairs. June 2012.
10. Kam, Katherine. What is Palliative Care? WebMD. http://www.webmd.com/palliative-care/what-is-
palliative-care
11. National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in Amer-
ica. 2012.
12. National Hospice and Palliative Care Organization. History of Hospice Care. http://www.nhpco.org/
i4a/pages/index.cfm?pageid=3285
13. IBID
14. IBID
15. IBID
16. Legal HelpMate. What is Patient Self-Determination Act? http://www.legalhelpmate.com/health-
care-directive-patient-act.aspx
17. National Hospice and Palliative Care Organization. History of Hospice Care.
18. Snow, Kate, et. al. Experts Debunk Health Care Reform Bills Death Panel Rule. ABC News. Aug. 11,
2009. http://abcnews.go.com/Health/Wellness/story?id=8295708
19. National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in Amer-
ica.
20. IBID
21. IBID
22. IBID
23. IBID
24. IBID
25. IBID
26. IBID
27. Huskamp, Haiden A., et. al. A New Medicare End-Of-Life Benefit For Nursing Home Residents. Health
Affairs. January 2010.
28. Groninger, Hunter. A Gravely Ill Patient Faces the Grim Results of Outliving Her Eligibility for Hospice
Benefits. Health Affairs. February 2012.
29. Hospice Action Network. What is Hospice? http://hospiceactionnetwork.org/get-informed/what-is-
hospice/
30. Huskamp, Haiden A., et. al. A New Medicare End-Of-Life Benefit For Nursing Home Residents.
31. IBID
32. Morrison, R. Sean. Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries.
Health Affairs. March 2011.
33. Smith, Alexander K. Half of Older Americans Seen in Emergency Department in Last Month of Life;
Most Admitted to Hospital, and Many Die There. Health Affairs. June 2012.
34. Smith, Alexander K. Half of Older Americans Seen in Emergency Department in Last Month of Life.
35. Patrizi, Patricia, et. al. Robert Wood Johnson Foundation. Improving care at the End of Life: How the
Robert Wood Johnson Foundation and Its Grantees Built the Field. March 2011.
36. Field, Marilyn J. and Cassel, Christine K., Editors; Committee on Care at the End of Life, Institute of
Medicine. Approaching Death: Improving Care at the End of Life. 1997.
37. IBID

Issue Brief 21
The Center
for Health Affairs

38. Institute of Medicine. Committee of Transforming End-of-Life Care. http://www.iom.edu/Activities/

Aging/TransformingEndOfLife.aspx. Accessed March 2, 2013.
39. Krieger, Lisa M. National Institute of Medicine will recommend ways to improve end-of-life care. The
Mercury News. Jan. 10, 2013.
40. Patrizi, Patricia, et. al. Robert Wood Johnson Foundation. Improving care at the End of Life: How the
Robert Wood Johnson Foundation and Its Grantees Built the Field.
41. IBID
42. Robert Wood Johnson Foundation. Collaborative interagency program to improve end-of-life care for
cancer patients and their families. http://www.rwjf.org/en/grants/grant-records/1998/09/collabora-
tive-interagency-program-to-improve-end-of-life-care-fo.html. Accessed March 2, 2013.
43. Robert Wood Johnson Foundation. Project Safe Conduct: Collaborative Interagency Program to Im-
prove End-of-Life Care for Cancer Patients and Their Families. http://www.rwjf.org/en/research-pub-
lications/find-rwjf-research/2008/05/project-safe-conduct.html. May 15, 2008.
44. Goodman, David C., et. al. The Dartmouth Institute for Health Policy & Clinical Practice. Trends and
Variations in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness. April 12, 2011.
45. IBID
46. Smith, Alexander K., et. al. Racial and Ethnic Differences in Advance Care Planning Among Patients
With Cancer: Impact of Terminal Illness Acknowledgement, Religiousness, and Treatment Preferenc-
es. Journal of Clinical Oncology. Sept. 1, 2008.
47. Groninger, Hunter. A Gravely Ill Patient Faces the Grim Results of Outliving Her Eligibility for Hospice
Benefits. Health Affairs. February 2012.
48. IBID
49. Aldridge Carlson, Melissa D. et. al. Hospices Enrollment Policies May Contribute To Underuse Of
Hospice Care In The United States. Health Affairs. December 2012.
50. Huskamp, Haiden A., et. al. A New Medicare End-Of-Life Benefit For Nursing Home Residents. Health
Affairs. January 2010.
51. IBID
52. Aldridge Carlson, Melissa D. et. al. Hospices Enrollment Policies May Contribute To Underuse Of
Hospice Care In The United States. Health Affairs. December 2012.
53. Groninger, Hunter. A Gravely Ill Patient Faces the Grim Results of Outliving Her Eligibility for Hospice
Benefits.
54. For additional historical information on the development of POLST in Oregon, refer to www.oregon-
polst.org.

22 Healthcare at the End of Life: A Look at Current Trends

 The Center for Health Affairs is the
leading advocate for Northeast Ohio
hospitals, serving those organiza-
tions and others through a variety of
advocacy and business management
services. The Center also works to
inform the public about issues that
affect the delivery of healthcare.
Formed by a visionary group of
hospital leaders 97 years ago, The
Center continues to operate on the
principle that by working together
hospitals can ensure the availability
and accessibility of healthcare ser-
vices. For more on The Center and
to download additional copies of
this brief, go to www.chanet.org.

@NEOHospitals The Center for Health Affairs

The Center The Center for Health Affairs 2013

for Health Affairs

1226 Huron Road East
Cleveland, Ohio 44115
Leading Advocate for Northeast Ohio Hospitals 216.255.3614 l www.chanet.org