Research and Practice: Partners in Care Series
Improving Value in Healthcare
Opportunities and Challenges for Palliative Care Professionals
in the Age of Health Reform
Devon S. Fletcher, MD
ƒ
Joan T. Panke, MA, RN, ACHPN
Despite having the highest per capita spending on
healthcare in the world, seriously ill patients in the United
States often do not receive the highest quality care.
Improving the value of healthcare by increasing quality
while reducing escalating costs is at the heart of US health
reform. With the passage of the Patient Protection and
Affordable Care Act of 2010, new healthcare delivery and
payment models are being implemented to achieve
these goals. This article reviews areas of health reform that
have specific relevance for hospice and palliative care,
highlights palliative care’s positive outcomes, and reflects
on current challenges within the healthcare system as
well as within the field itself. Considerations regarding the
language we use are explored, and recommendations
are provided to ensure hospice and palliative care is
represented in the planning and implementation of
health reform initiatives.
KEY WORDS
costs, health reform, hospice, palliative care, quality
fragmented system of healthcare delivery combined
with payment models that emphasize volumebased fee for service (FFS) has left seriously ill patients and families scrambling for resources and information
and overburdened with unreimbursed care. Healthcare
costs have skyrocketed.1-3
At the heart of the health reform in the United States is
the goal to improve the value of healthcare by increasing
quality and reducing the escalating costs. To achieve
these goals, the Patient Protection and Affordable Care
Act of 2010 (ACA) includes provisions to test new healthcare delivery and payment models that refocus reimburse-
A
ment structures to emphasize value of care rather than
volume of care.2,4,5
Controversy is not new when attempting to incorporate care for the seriously ill and dying into legislation. In
the 1970s and 1980s, the path toward the ratification of
the Medicare Hospice Benefit was rife with uncertainty,
and the definition of hospice saw numerous reiterations.
In the first attempt to pass the legislation, the bill died in
committee.6 Refining the definitions for hospice and palliative care continues today.
Despite tremendous growth in palliative and hospice
programs and the field’s documented improvement in
quality and reduced costs in the last decade, several provisions related to quality palliative care were removed
from the original health reform bills.2 These provisions
would have, in part, provided reimbursement for conversations regarding goals of care but instead were misconstrued as ‘‘death panels’’ and generated fears of rationing.
Nonetheless, palliative care is positioned to play a critical
role in efforts to redirect healthcare in order to establish
effective and efficient patient-centered care.2,7
This article reviews areas of health reform that have specific relevance for hospice and palliative care, highlights
palliative care’s positive outcomes, and reflects on current
challenges within the healthcare system as well as within
the field itself. Consideration regarding the language we
use is explored, and recommendations to ensure hospice
and palliative care is represented in the planning and implementation of health reform initiatives are provided.
HEALTH REFORM
Escalating Costs Driving Health Reform
Devon S. Fletcher, MD, is Assistant Professor, Department of Internal
Medicine, Division of Hematology, Oncology and Palliative Care, Virginia
Commonwealth University Health Systems, Richmond.
Joan T. Panke, MA, RN, ACHPN, is Palliative Care Nurse Practitioner
and Palliative Consultant, Arlington, VA.
Address correspondence to Devon S. Fletcher, MD, Virginia Commonwealth University, 1300 E Marshall St, PO Box 985934, Richmond, VA
23298 (dsfletcher@mcvh-vcu.edu).
The authors have no conflict of interest to disclose.
DOI: 10.1097/NJH.0b013e3182604df2
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Approximately 5% to 10% of all patients living with serious
illness, multiple chronic conditions, or functional dependency account for well over half of the nation’s healthcare costs.1-3 The costliest Medicare beneficiaries include
individuals with multiple chronic conditions, those with
functional impairments, those with dual eligibility for Medicare and Medicaid, those using hospital services, and
those in the last year of life.1-3,8-11 This population is the
target of quality palliative care and, when eligible, hospice
services.2,7
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Research and Practice: Partners in Care Series
Today, there are approximately 90 million Americans
living with serious illness, and that number is anticipated
to more than double in the next 25 years.12 Additionally,
the population is aging. By 2030, it is estimated that the
number of persons older than 65 years is expected to
be more than twice the number in 2000.13 While aging
baby boomers may experience unprecedented longevity,
the extra years may carry a significant burden of chronic
illness, with most living with multiple chronic medical
conditions.13
What has become all too clear is that value is missing
in our healthcare system, care is not optimal, and the rising costs are unsustainable.14 Despite having the highest
per capita spending on healthcare in the world, multiple
studies have demonstrated that seriously ill patients and
their families receive poor-quality medical care characterized by unrelieved symptoms, unmet psychosocial needs,
and increased family caregiver and financial burden.2,8,9,13,15
Improving the value in healthcare is at the heart of
health reform in the United States and requires increased
quality while reducing escalating costs. With the passage of
the ACA, new healthcare delivery and payment models
are being implemented to achieve these goals.2,4,15
ACA: Brief Review
The ACA of 2010, which was signed into law in March 2010,
is a combined piece of legislation that includes the ACA
(HR 3590) and the Health Care and Education Reconciliation Act of 2010 (HR 4872).4,16
Several provisions in the ACA include demonstration
projects aimed at changes to delivery and payment reform that will test and permit a gradual shift from volumebased FFS payment models to a pay-for-performance or
‘‘value-based’’ purchasing.17 A challenge for implementation will be to ensure that reforms do not impose so
radical a system change that providers cannot comply or
implement changes without imposing unsustainable risk.
The demonstration projects are therefore geared toward
exploring ways for providers, systems, and payers to gradually transition to new care delivery and payment models
in order to build the capacity to adapt to the changes.17
Although provisions related to access to quality palliative care were removed from the original health reform
bills due in part to concerns over perceptions of the care
provided, several provisions related to payment and quality reform that impact palliative and hospices services remain.2 What does remain is a new provision (Section 2302
‘‘concurrent care for children’’), under which children are
able to access hospice and curative care simultaneously.
Demonstration projects for concurrent care in adult populations are also being evaluated.2,4
While not mandated in the ACA, the law offers other
opportunities for palliative care and hospice programs to
participate in the planning, development, and implemenJournal of Hospice & Palliative Nursing
tation of new delivery and payment models such as accountable care organizations (ACOs), patient-centered
medical homes, and the bundling of payments for a single
episode of healthcare.2 These models aim to improve the
quality of care and control the costs for high-need, highrisk patient populations by focusing efforts on the very
approaches to care and quality outcomes that palliative
and hospice care has long demonstrated. In doing so, these
models aim to shift provider incentives from volume-based
FFS models to payment based on quality of care.2,5,17,18
The ACA lays out a plan for over $424 billion in net
Medicare spending reductions that will be implemented
over a 10-year period. This will reduce the annual payment updates to hospitals and other providers as well as
payments to Medicare Advantage plans. In addition, the
law establishes several new policies and programs that
are intended to further reduce costs and improve quality
of patient care.19
Sample Healthcare Delivery and Payment
Reform Models
Accountable Care Organizations. An accountable care organization consists of a group of providers (clinicians, hospitals, specialists, and other providers) that work together to
provide and coordinate care for a specified patient population across settings. Together, the providers accept joint
responsibility for quality and costs for the identified population.5,20,21 The Medicare Shared Savings Program was
created to help Medicare FFS providers become an ACO.20
The Pioneer ACO Model, which is operated by the Centers for Medicare & Medicaid Services (CMS) Innovation
Center, is designed for healthcare organizations and providers that have demonstrated excellence in integrated
coordination of care. Thirty-two Pioneer ACOs will participate on a faster track to move toward transitioning from
FFS payments to a population-based model, meaning
there would be a single price assigned for the healthcare
services needed by a specific group of patients, and a reduction in FFS payments.22,23
Primary Care Medical Home. The primary care medical
home (PCMH) is not a ‘‘place.’’ The Agency for Healthcare Research and Quality defines a medical home as
the model or organization of primary care that delivers
core functions of primary health and includes five functions and attributes: comprehensive care, patient-centered,
coordinated care, accessible services, and quality and
safety.24
The PCMH is accountable for meeting the majority of
a patient’s physical and mental health needs and recognizes that the delivery of comprehensive care requires a
team approach. Attention to the patient’s and family’s
unique needs, culture, values, and preferences is paramount, and measures are taken to ensure they are fully informed, and the plan of care is meaningful to them.24
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The PCMH strives to coordinate care across a healthcare system, especially during transitions between sites of
care. Clear communication between patient, family, and
providers is stressed, and efforts are made to improve access and achieve shorter waiting times for healthcare
needs. The PCMH measures quality and improvements,
including responses to patient experiences and satisfaction, and data are shared with the public.24
Bundled Payment. Bundled payments involve reimbursement in a single, comprehensive payment for all services involved in the patient’s care for a specific medical
condition. Distinct goods and services for a given condition and across settings are ‘‘bundled’’ into a payment
package that shifts incentives from FFS models toward
payment based on the quality of services and increased
efficiency.2,17
The new bundled payment models ensure that both
payer and provider share the financial risks and allow for
significant flexibility regarding timeframes for an episode
and services covered. If the costs of care are less than the
bundled payment amount, the providers keep the difference. If costs exceed payment, providers absorb the loss.
For some proposed models, such as ACOs, savings are
shared by all entities involved.25,26 Proponents suggest that
the bundled payment model will lead to more judicious
use of health services and improved care quality.
PALLIATIVE CARE IMPROVES QUALITY
AND REDUCES COSTS
As one reads the descriptions of the highlighted models
for delivery and payment reform, it becomes clear that
palliative care is well positioned to play a critical role in
care integration and participating in effective and efficient
patient-centered care priorities. Many of the goals of each
model represent areas where palliative care has demonstrated positive outcomes.
Hospice is still restricted to terminally ill patients who
are expected to die within 6 months or less, although recertification allows for continuation beyond 6 months as
long as the patient continues to meet criteria. The ACA
provision for concurrent care for children and demonstration projects for concurrent hospice and curative care
for adults may shift some patients earlier into hospice services.2,4 Terminally ill patients who choose not to elect hospice also fit the palliative care patient population targets.27
This is the same high-risk, high-cost population that is
the focus of new healthcare delivery and payment models.
Improved quality of life and the provision of effective
and efficient patient- and family-centered care are not foreign concepts to palliative and hospice providers. There is
accumulating evidence that palliative and hospice programs
deliver patient- and family-centered care that improves
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agement, communication, emotional and spiritual support,
improved quality of life, better patient and family satisfaction, and reduced healthcare costs.2,8,10,13,28,29,31-44
In addition to other quality outcomes, a recent randomized trial involving lung cancer patients showed extended
survival time of an average of 2.7 months in those receiving concurrent palliative care services.44 Researchers posit
that increased survival may be due in part to fewer hospitalizations, decreased rates of major depression (which is
an independent predictor of mortality), prevention and
treatment of distressing symptoms, and better family caregiver support.11,44
Palliative care teams have demonstrated reduced cost of
care for hundreds of the most medically complex patients
per hospital per year.28,39,41 In a study of eight hospitals
with mature palliative care programs, the cost per day for
palliative care patients was dramatically lower for decedents and patients who survived to hospital discharge.39
Another study that looked at Medicaid patients receiving
palliative care services at four New York State hospitals
found similar cost reduction associated with palliative
care consultation.41 These findings have been replicated
widely and are consistent across hospital types nationwide.
Hospice programs continue to demonstrate high patient
satisfaction and quality of care for terminally ill patients.32
Health systems that integrate established, well-supported,
and well-staffed and trained palliative care programs when
implementing new delivery models will have a greater ability to achieve the quality and healthcare value objectives
that are central to health reform.1,7,27,31
Palliative care programs have rapidly expanded since
the first hospice was established in the United States in the
early 1970s. The number of hospice programs increased
by 47% with a 74% increase in the number of persons
served over the last 10 years (Figure 1). According to 2009
statistics, hospital-based palliative care programs have
FIGURE 1. Total hospice patients served by year. Source: NHPCO Facts
and Figures, 2011. Reprinted with permission.
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Research and Practice: Partners in Care Series
increased by 138% since 2000 (Figure 2).2,13,45,46 Palliative
care services are expanding to outpatient settings, cancer
centers, and emergency departments.11 Some community
home care and hospice organizations are providing nonhospice palliative care for patients with serious illness
who do not meet hospice criteria or choose not to elect
hospice care.
At the same time the field was witnessing the rise in demand for services and adding to its research base, palliative care was emerging as a recognized area of subspecialty
for several disciplines. Several important documents were
released and received high-level endorsements, and accreditation opportunities have become available.47
National Consensus Project: Clinical Practice Guidelines for Quality Palliative Care. The National Consensus
Project (NCP) was formed in order to formalize standards
and priorities identified by leaders in the field.27,47 The
NCP Clinical Practice Guidelines for Quality Palliative
Care (guidelines) provides a consensus definition of palliative care and outlines essential elements of the field delineated in eight specific domains. This document provides
a framework for the structure and provision of palliative
care services and outlines program resource requirements
and performance measures for systematic evaluation of
care.27 The guidelines help to reduce variation across programs. The second edition, published in 2009, reflects
changes in the specialty.27 A third edition is expected in
2014 and will incorporate important advancements, including the Joint Commission’s (TJC’s) Advanced Palliative Care Certification and policy reform (C. M. Dahlin,
oral communication, April 2012).
National Quality Forum (NQF): A National Framework and Preferred Practices for Palliative and Hospice
Care Quality. In 2006, NQF endorsed a comprehensive
framework for evaluating the quality of palliative and hospice care, along with a set of 38 preferred practices and
nine research recommendations.48,49
NQF Quality Measures. In February 2012, the NQF endorsed 14 quality measures for palliative and hospice care.
These measures help providers ensure patients receive the
high-quality care they deserve. The measures are appli-
FIGURE 2. Growth of palliative care. Source: Center to Advance
Palliative Care, 2011. Reprinted with permission.
Journal of Hospice & Palliative Nursing
cable to all clinical settings and provider types and will
help improve quality and generate future research.50
TJC Advanced Palliative Care Certification. The NCP
guidelines and the NQF framework and preferred practices shape TJC’s Advanced Palliative Care Certification, initiated in 2011 for hospital-based palliative services.51
These and other important developments and advances
in the field help with implementation of new programs
and building upon existing services.
PERCEPTIONS REGARDING HOSPICE
AND PALLIATIVE CARE
The advancement of the field of hospice care and the
emergence and growth of nonhospice palliative care have
at the same time unified the specialty and caused tensions.
Tensions continue to exist within the field itself regarding
how to define the specialty. The issues are complex and are
based in part on historical events, barriers to needed palliative care for nonterminal patients and their families, and
shifting priorities in healthcare.52,53 The challenge is for
the field to unite to achieve the best possible outcomes.
To do so will require reflection about our past and considerations for the future of the field in the current health reform environment.
Words influence perceptions. Perceptions influence responses. We have seen how perceptions have influenced
responses in discussions with patients, families, and colleagues; attempts to educate referral sources and administrators regarding earlier access to needed services; and
recently policymakers’ response to language put forth in
legislative bills. The unfortunate death panel response to
the portion of the legislation that included counseling on
advanced directives, living wills, and end-of-life care resulted in removal of these provisions from the final bill.2
Misperceptions regarding the scope of palliative care services persist and remain a barrier to accessing needed
services.
Part of the difficulty with misperceptions appears to
be related to confusion of commonly used terminology.
For example, what does ‘‘comfort care’’ really mean? In
reality, it may mean different things to different people.
If a family agrees to ‘‘comfort care,’’ have they agreed to
a do-not-resuscitate status? A descriptive phrase may be
more effective at describing what some of the commonly
used terms are meant to imply. While these efforts could
become cumbersome, it is important that we become
more aware of how we are being perceived and seek ways
to improve how we communicate hospice and palliative care more effectively. Our challenge is to be mindful
of the language and phrases to which we have become
accustomed.
We are closer than ever to the goal of having palliative care and hospice fully integrated into our healthcare
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system. As health reform unfolds, it is critically important
that hospice and palliative care providers are able to articulate the field’s potential to impact key reform initiatives.
Public Opinion
In an attempt to explore consumer awareness and understanding of palliative care, a recent public opinion poll
tested language, terminology, definitions, and messaging
with key audiences.54 Results revealed significant opportunities for improving consumer, policymaker, and provider perceptions regarding the scope and benefits of
palliative care.
Poll results showed that the term ‘‘palliative care’’ is
largely unknown by a majority of the public (Figure 3)
and widely misunderstood by providers. Among physicians polled, the majority equated palliative care with terminal phases of illness, essentially assuming restrictions
similar to hospice care. Providers also reported a hesitancy
to use the term ‘‘palliative care’’ because it would be distressing to patients and their families.55 Interestingly, this
finding was supported by another poll by the Regence
Foundation56 that revealed that while 96% of the 500
board-certified physicians surveyed supported palliative
care, 42% expressed concern that emphasizing palliative
care could interfere with treatments aimed at extending
patient lives as long as possible. About a quarter said they
are reluctant to recommend palliative care because their
patients may perceive they are not doing everything possible to extend their lives.
Several different iterations of language and messaging
were tested. The following definition received the most
positive responses:
Palliative care is specialized medical care for people with
serious illnesses. This type of care is focused on providing
patients with relief from the symptoms, pain, and stress
of a serious illnessVwhatever the diagnosis. The goal is to
improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, and
other specialists who work with a patient’s other doctors
to provide an extra layer of support. Palliative care is
appropriate at any age and at any stage in a serious illness
and can be provided together with curative treatment.54
Once consumers understood palliative care from this
perspective, they were extremely positive about palliative care and want access to this type of care.
n 95% agreed that it is important for patients with serious illness and their families to be educated about
palliative care;
n 92% say they would be likely to consider palliative
care for a family member or loved one if they had a
serious illness;
n 92% say it is important that palliative care services are
at all hospitals treating patients with serious illness
and their families.54
What resonated with many of responders was the fact
that the family as well as the patient was being cared for
by a team and knowing the palliative team was working
with the patient’s other doctors and providers. Responders
also preferred the term ‘‘serious illness’’ rather than ‘‘advanced illness,’’ noting that ‘‘advanced’’ was perceived as
more closely linked with end of life and terminal phases
of disease. Also interesting was the fact that this definition elicited a favorable response to palliative care regardless of the consumer’s political party affiliation.54
Language is important. In order to improve access to
needed services, it is critical that the messages are clear
and consistent and that perceptions of the entire scope of
palliative services are better understood by all.
PALLIATIVE CARE POLICY PRIORITIES
FIGURE 3. Consumer awareness of palliative care. Source: Center to
Advance Palliative Care, 2011. Reprinted with permission.
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In the future, payment for healthcare will likely become
linked to outcomes of quality and costs. In order to overcome the barriers preventing access to palliative services,
we need to increase patient and provider education about
the field, increase workforce availability, and increase research to support palliative and hospice quality outcomes.
The ACA requires hospice to report to CMS on quality
measures by October 20134; CMS is field-testing hospice
and palliative care measures, and in 2012, the NQF approved 14 measures that will assist programs in providing data on quality.2,4 Additional research is needed on
how social media and other technology-based communication can improve access and system responsiveness
for patients.
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Research and Practice: Partners in Care Series
Access to hospice and palliative care services varies significantly across the United States. Smaller, for-profit, safety
net, and Southern hospitals are less likely to offer palliative services.13 Hospital palliative care programs also show
significant variation in team makeup and support. Studies
have also revealed disparities in access to hospice and palliative services among minority populations.57,58 Therefore,
priorities should include adherence to national guidelines
and preferred practices in order to utilize available tools
to help establish quality hospice and palliative care programs that reflect the field’s standards. Much progress has
been made in identifying the core structure and processes
for high-quality hospice and palliative care and development of standards to promote their use.11,27
Despite nearly a doubling in palliative care programs
and increases in hospice programs and individuals served,
today there is approximately one palliative trained physician for every 1200 patients with a serious illness.12,13 The
workforce shortage is expected to increase in the coming
years to meet the needs of anticipated shifts in demographics that estimate a doubling of the population older
than 65 years and those coping with serious illness.11 In
order to respond to the increasing need for care, there will
also need to be an adequate number of trained, creden-
tialed, and certified hospice and palliative care providers
as well as increasing primary palliative care skills for all
providers.
Funding for research in hospice and palliative care is
one of the highest priorities.2,11 The National Institutes of
Health (NIH) extramural funding for palliative care-related
research is less than 0.01% despite Senate Appropriations
Committee support for emphasis on palliative care research at NIH.11 Refining quality measures and messaging
as well as continued contribution to the growing evidence
base for the specialty is needed. Hospice and palliative
provider and leadership organizations have outlined specific research priorities, and tools are available to utilize
metrics that assist in data collection and analysis.59-63
The Table provides examples of selected policy priorities.
CONCLUSION
Regardless of the status of the current health legislation
and differing opinions on its ability to correct our health
system’s current deficiencies, healthcare reform is an impending reality. Our current system is unable to provide
quality care in many settings and is financially unsustainable. The field of hospice and palliative care is uniquely
TABLE Selected Policy Priorities for Hospice and Palliative Care
Access
& Adherence to national consensus guidelines, standards, and preferred practices to ensure provision of
high-quality hospice and palliative care and to reduce variation27,49,63
& Increased outpatient and home care services and ongoing administrator, provider, and public education to
improve perception of palliative and hospice care’s scope and positive outcomes11
& Primary palliative care training for all specialties will increase provider skills and focus specialty-level palliative
care services for the most complex needs
& Triggers to allow for early identification of high-risk patients in need of palliative services across settings (hospital,
emergency department, nursing facilities, rehabilitation and specialty hospitals, outpatient settings)2,11
& Regulatory and accreditation requirements to reduce variation in services13
Workforce
& Increase specialist-level workforce across disciplines; providers trained, credentialed, and certified in hospice
and palliative care (across disciplines)
& Expansion of the number of training sites for providers (nurses, physicians, social workers, chaplains, and
others) to receive standardized training
& Loan forgiveness programs to offset costs of subspecialty training2,11
Research
& Funding for hospice and palliative care research may be the highest priority11
& Testing new delivery models and demonstrating hospice and palliative care outcomes
& Evaluating and reporting on quality outcomes based on new measurement standards49
& Exploring and testing opportunities for improved communication and response to needs including social media
and other technology-based communication methods
& Specific research priorities as outlined in hospice and palliative care membership organizations59-62
Journal of Hospice & Palliative Nursing
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Research and Practice: Partners in Care Series
poised to be at the forefront of these inevitable changes,
given the field’s demonstrated ability to increase quality
care at lower costs across all settings.
As unpalatable as discussing financial incentives for
changing healthcare practice is for some, this is the reality we face. Understanding how cost and quality are integrally intertwined will help to ensure that hospice and
palliative care providers are at the table during discussions
and in implementing key initiatives. Understanding the
current health legislation and how hospice and palliative
care can be effective in implementing these changes will
only serve to increase awareness of our specialty’s philosophy and goals while reaching more of the population
who needs our services. To do so, there needs to be a concerted effort to consider how the field is perceived and
find ways to join together to deliver messaging that adequately reflects the scope and benefits of hospice and
palliative care.
There is much that palliative and hospice care can do
during this time. Increasing the availability and knowledge of our services and increasing research on the ability
for palliative care to improve quality as well as cost reduction are critical. The future of palliative care is being written. As we continue to add to and disseminate the volume
of evidence-based research and outcomes that improve
the quality of life of both patients and families, future opportunities and challenges will no doubt emerge. The
foundation is more secure today than it was a decade
ago. Attention to palliative care policy priorities will help
determine the path that lies ahead.
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For more than 42 additional continuing education articles related to palliative and hospice care,
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