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Palliative Care for Patients With Advanced Illness: A Changing Policy Landscape

Evidence-Based OncologyDecember 2016
Volume 22
Issue SP16

A lag in policy changes has resulted in significant variation across palliative care programs for treating advanced illnesses. A recent shift in policy has, however, allowed small-scale testing of community-based palliative care delivery and some innovations in other delivery systems.


join the Social Security and Medicare rolls. Moreover, individuals 80 and older are the fastest growing demographic among older adults, with their ranks forecast to grow from 5.6 million in 2010 to more than 19 million by 2050.1

The rising number of aging Americans creates a commensurate increase in the costs for healthcare. While they constitute only 24% of Medicare beneficiaries, seniors 80 and up account for more than 33% of Medicare expenditures; much of that spending stems from the prevalence of chronic diseases and high end-of-life (EOL) costs.2 In 2012, half of all individuals with new cancer diagnoses were Medicare beneficiaries, with that figure expected to rise over 10 years.3 Additionally, $1 in every $12 of Medicare fee-for-service spending was spent on cancer care in 2015.4

With the demographic shift underway, policy makers, payers, and providers have been exploring models of care that can offer better quality, improve the overall patient experience, and also reduce costs. In the 6 years since passage of the landmark and controversial Affordable Care Act (ACA), a variety of new approaches have emerged with this goal in mind, and a significant change has been the integration of palliative care.

Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Unlike the Medicare hospice benefit—which is available only to individuals who have a terminal prognosis of 6 months or less to live and who agree to forego more conventional, aggressive therapies—palliative care is provided throughout the continuum of illness, irrespective of whether the patient has a terminal prognosis, and can be provided concurrent with care aimed at cure or disease modification.

Palliative care addresses the physical, intellectual, emotional, social, and spiritual needs in order to facilitate patient autonomy, access to information, and treatment choice. The following features characterize palliative care philosophy and delivery:

  • Care is provided and services are coordinated by an interdisciplinary team (IDT) that includes, but is not limited to, physicians, advance practice nurses, social workers, and spiritual counselors/chaplains.
  • Patients, families, and palliative and non-palliative healthcare providers collaborate and communicate about care needs, and patient family preferences are incorporated into the care.
  • Services are available concurrent with, or independent of, curative or life-prolonging care.
  • Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process, and after death.

Need for an Interdisciplinary Team

An interdisciplinary palliative care team typically includes a physician, registered nurse, social worker, and pastoral or spiritual counselor. Other disciplines such as nutritionists, physical or occupational therapists, and home care aides may be added to the team depending on the patient’s individual needs. Working with the patient, his or her family and caregivers, and in partnership with the patient’s primary care and specialty care teams, the palliative IDT develops a plan of care to help the patient manage the side effects of treatment, minimize pain and symptoms, preserve existing function, and address the psychosocial and spiritual effects of advanced illness.

Among the diagnoses where palliative care is often involved, patients with cancer may greatly benefit from palliative care, as curative therapies such as surgery, chemotherapies, and radiation can create an even greater symptom burden in these patients than the underlying cancer. For example, nutritional counseling can help patients maintain their weight and minimize the loss of appetite associated with chemotherapy.

A 2016 study from the American Society of Clinical Oncology (ASCO) found that introducing palliative care shortly after a diagnosis of certain metastatic cancers greatly increases a patient’s coping abilities, as well as overall quality of life. Researchers also found that early integration of palliative care results in an increase in discussions about patient EOL care preferences.5

Not only do these interventions improve patient comfort and quality of life, they can significantly reduce costs. A 2009 study found that patients receiving concurrent palliative and curative treatments were half as likely to visit the emergency department, and had hospitalizations and days in the intensive care unit at one-third the rate of the comparator population.6

How Can Policy Changes Catch Up?

Despite the growing body of evidence supporting the integration of palliative care into treatment plans for individuals with advanced illness, public policy has lagged behind. Currently, most palliative services are delivered in an inpatient or hospital-based setting, and focus more on the medical/clinical elements of palliative care. Palliative medicine—in the form of consults from doctors, nurse practitioners, and some social workers—may be covered by the Medicare program; however, many important services, including spiritual counseling, caregiver support, and other essential services, must be financed separately, often through charitable giving. There are similar and even more sizeable policy and financial gaps when it comes to community based palliative care.

Although the National Consensus Project for Quality Palliative Care has laid out a clinical practice guidance,7 there is no federal policy or regulatory framework. Accrediting bodies, such as the Joint Commission for the Accreditation of Healthcare Organizations and others, have adopted standards and quality measures for community based palliative care, but these are voluntary measures and not uniformly applied across programs. This results in significant variation across palliative care programs, and hinders access to consistent, standardized, and measurable palliative care services.

Policy progress has been further thwarted by the highly charged political climate of the day. When it was first raised during debate over the ACA, Medicare coverage for advance care planning services—a central component of palliative care—morphed into the infamous “death panel.” Even as that rhetoric has died down in recent years, the rancorous political climate in Washington has inhibited the type of wholesale policy changes necessary for more widespread access to community based palliative care.

In lieu of sweeping policy changes, palliative care advocates have adopted a more incremental approach. Recent policy changes, primarily in the ACA, are allowing small-scale testing of community-based palliative care delivery, and for some innovations in other delivery systems. Other administrative changes are slowly increasing access to Advance Care Planning. While many of these demonstrations are still playing out, some models, including the Medicare Care Choices Model (MCCM), accountable care organizations (ACOs), and the Independence at Home Demonstration, are showing early promise.

Medicare Care Choices Model

MCCM is one of the demonstration initiatives under the Centers for Medicare & Medicaid Innovation (CMMI) to allow patients, who are eligible but not enrolled in the Medicare hospice benefit, to receive supportive palliative care services while concurrently receiving “curative” or conventional care. The demonstration is limited to hospice providers as awardees and is intended to test whether these patients benefit from additional care coordination, enjoy a higher quality of life, experience fewer hospitalizations and other preventable health expenditures, and, if their health deteriorates, are able to transition to hospice in a more-timely fashion.

It is also limited to patients with advanced cancer, congestive heart failure, HIV, and chronic obstructive pulmonary disease. More than 141 hospices are participating in the demonstration, which began in January 2016.

While the demonstration is still in its early days, the initial response has been mixed. At first, eligibility criteria were so tightly managed that few patients were able to participate—a patient had to meet a total of 14 individual requirements before he or she could be enrolled. Noting the enrollment challenges in the first few months, CMMI modified the eligibility criteria in April 2016. While that modification allowed for some increased participation in the demonstration project, additional refinement is needed to further relax the eligibility requirements for enrollment. In addition, modifying the financial structure will be necessary to construct a more sustainable model.

Accountable Care Organizations and Independence at Home Demonstration

The ACA led to the creation of a variety of delivery and payment system reforms that are creating new challenges and opportunities for hospitals, health systems, health plans, and others. Hospital reimbursement is more at risk than ever before, placing greater emphasis on the ability to manage patient care and patient costs.

ACOs and the Independence at Home Demonstration are both models that, through a variety of approaches, encourage providers to collaborate on care delivery and to assume greater financial risk for their patient populations. Palliative care can help achieve those objectives, and hospice and palliative care organizations are increasingly aligning with these care models to provide concurrent palliative care for individuals with advanced illness, and to facilitate transition to hospice at the appropriate time. ACOs recognize the value in establishing or partnering with palliative care programs. In fact, over 70% of all ACO hospitals and 82% of ACO hospitals with 50 or more beds had active palliative care programs in 2015.8

Independence at Home is testing the effectiveness of in-home primary care services with the aim of improving care for Medicare beneficiaries with multiple chronic conditions. Fifteen sites, serving more than 10,000 beneficiaries, are currently participating in Independence at Home. In 2015, Independence at Home practices saved Medicare an average of $1010 per beneficiary across a 2-year demonstration period.9 Some hospice and palliative care programs are coordinating with Independence at Home providers, both to subcontract for palliative care, as well as to coordinate with and transition to hospice when appropriate.

Medicare Access and CHIP Reauthorization Act

The Medicare Access and CHIP Reauthorization Act (MACRA) fundamentally changed the way that physicians are paid under Medicare. Specifically, MACRA repealed the troubled Sustainable Growth Rate formula and replaced it with a Quality Payment Program that emphasizes the overall value of care, rather than the volume of procedures provided, using 2 different approaches:

  • The new Merit-based Incentive Payment System
  • Adoption of alternative payment models (APMs)

Under MIPS, physicians are assessed and incentivized to offer care that emphasizes quality, minimizes ineffective resource utilization, integrates clinical practice improvements, and advances the use of information technology. APMs include ACOs and other payment models that shift additional risk onto providers. Given the greater emphasis on value and the corresponding financial incentives, the MACRA payment reforms could allow for even more widespread access to palliative care.

Advance Care Planning

In its 2016 Physician Fee Schedule Final Rule, adopted in October 2015, CMS included 2 Current Procedural Terminology codes for advance care planning conversations. Under this change, any physician or nonphysician practitioner who bills Medicare Part B for their services can document and bill for conversations that cover patient goals of care, discussions of advance care planning, and help with understanding advance directives, which are a helpful tool for patients, their family caregivers, and the professionals caring for them during the course of a serious illness.10

While payment for these services is a good first step to promote broader, earlier discussion of EOL care, significant work must be done to ensure that patients can access comprehensive advance care planning services. A recent survey from the John A. Hartford Foundation found that physicians are largely unprepared to lead advance care planning discussions—only 14% of physicians have billed under the new codes, and only 29% felt they were appropriately trained to have discussions about EOL care.11 Several pieces of legislation have been introduced to address these shortcomings and allow for more robust, effective advance care planning conversations.

Policy on the Horizon

In addition to the demonstrations and administrative actions already in place, several pieces of federal legislation have been introduced that would facilitate greater growth and availability of community based palliative care.

The Care Planning Act (S. 1549) was introduced by Senator Mark Warner (D-VA) and Senator Johnny Isakson (R-GA) to improve individual care planning and coordination of services for individuals facing advanced and terminal illness.12 The legislation creates a Medicare benefit, called Planning Services, for those with serious or life-threatening illness, including team-based discussion of goals of care and values, explanation of disease progression, exploration of a relevant range of treatment options, and a documented care plan that reflects the individual’s goals, values, and preferences. The bill would also direct CMMI to conduct an Advanced Illness Coordination Services demonstration, which will deliver wrap-around, home-based services to beneficiaries who need assistance with 2 or more progressive disease-related activities of daily living. This demonstration would build upon the MCCM already underway, and expand palliative care services to individuals who are poorly served by the current delivery system.

The legislation includes other provisions to support quality measurement; increase awareness of care planning; provide information about advance care planning, portable treatment orders, palliative care, hospice, and planning services, and other activities.

In the US House of Representatives, Congressman Earl Blumenauer (D-OR) and Congressman Phil Roe (R-TN) introduced the Personalize Your Care Act (H.R. 5555).13 Similar to the Care Planning Act, the Personalize Your Care Act would establish a new Medicare model that allows individuals receiving conventional therapies to receive concurrent care choices such as hospice care, a functional assessment of the individual, in-home services and supports, 24/7 emergency support, and other palliative care services. H.R. 5555 also provides grants to establish or expand Physician Orders for Life Sustaining Treatment (POLST programs) and would require that certified electronic health records display current advance directives and physician orders for life sustaining treatment. Other provisions would require for portability of advance directives, public education and awareness for advance care planning, and training for clinicians.

Palliative Care Training and Education

Even if the policy landscape allowed for more widespread access to palliative care, significant workforce shortages continue to inhibit the growth and availability of these much needed services. Hospice and palliative care professionals require a multi-dimensional set of skills, attitudes, and competencies, including the ability to manage the myriad symptoms associated with advanced and comorbid illnesses; the ability to facilitate communication and problem solving between patients, their families, and their care teams; and the ability to coordinate and provide team-based care across a range of settings.

A 2010 study published in the Journal of Pain and Symptom Management found a significant shortage in the number of adequately trained hospice and palliative care physicians and recommended additional 6000-18,000 physicians to meet existing hospice and palliative care needs.14 In the 6 years that have followed, that need has likely increased significantly. Further, palliative and EOL care must be better integrated into other specialties. About 65% of those responding to an ASCO survey felt that they had received inadequate education in controlling symptoms associated with cancer, and 81% felt they had inadequate mentoring in discussing a poor prognosis with their patients and families.15

The Palliative Care and Hospice Education and Training Act16 (H.R. 3119/S. 2748) would address these gaps by supporting programs that provide clinical palliative medicine training in a variety of settings, including hospice, and developing specific measures to evaluate the competency of trainees. The Palliative Medicine and Hospice Academic Career Award program will enable hospice and palliative physicians to train members of interdisciplinary teams of healthcare professionals in palliative and hospice care techniques.

Where to Next?

As this article goes to press, Donald J. Trump has been elected President of the United States. Given his campaign’s emphasis on repealing and replacing the ACA, the future of many of these initiatives is unclear. Congressional Republicans are beginning to outline how they would go about repealing the law, and how they would replace it, but narrow Republican margins in the Senate will likely complicate wholesale repeal. Further, many of these initiatives —including the Independence at Home program and value-based purchasing under MACRA—enjoy bipartisan support, so work in these areas will most certainly continue. As this new policy environment unfolds, the National Hospice and Palliative Care Organization, along with other hospice and palliative care organizations, will endorse policies that promote and protect the Medicare hospice benefit, and will support policies that allow hospice and palliative care providers to innovate and refine patient care services and ensure that all patients with advanced and terminal illness have access to the pain and symp tom relief, psychosocial services and support, and spiritual care that they need.Sharon Pearce is vice president for public policy, The National Hospice and Palliative Care Organization.


The National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. Founded in 1978 as the National Hospice Organization, the organization changed its name in February 2000 to include palliative care, recognizing that hospice care and palliative care share the same core values and philosophies.


Sharon Pearce

1731 King Street, Suite 100

Alexandria, VA 22314

E-mail: spearce@nhpco.org References

  1. The demographics of aging. Transgenerational Design Matters website. http://transgenerational.org/aging/demographics.htm. Accessed October 24, 2016.
  2. Neuman T, Cubanski J, Huang J, Damico A. The rising cost of living longer: analysis of Medicare spending by age for beneficiaries in traditional Medicare.” Kaiser Family Foundation website. http://kff.org/medicare/report/the-rising-cost-of-living-longer-analysis-of-medicare-spendingby-age-for-beneficiaries-in-traditional-medicare/. Published January 14, 2015. Accessed October 24, 2016.
  3. Stockdale H, Guillory K; American Cancer Society Cancer Action Network. Lifeline: Why cancer patients depend on Medicare for critical coverage. CMS website. https://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2016-Fact-sheets-items/2016-08-09.html. Published 2013. Accessed October 24, 2016.
  4. Maroongroge S, Kim SP, Mougalian S, et al. The cost of cancer-related physician services to Medicare. Yale J Biol Med. 2015;88(2):107-114.
  5. Greer JA, El-Jawahri A, Pirl, WF, et al. Randomized trial of early integrated palliative and oncology care. J Clin Oncol. 2016;34(suppl; abstract 10003).
  6. Spettel CM, Rawlins WS, Krakauer R, et al. A comprehensive case management program to improve palliative care. J Palliat Med. 2009;12(9):827-832. doi: 10.1089/jpm.2009.0089.
  7. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. HPNA website. https://www.hpna.org/multimedia/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf. Published 2013. Accessed November 1, 2016.
  8. Kelley AS, Meier DE. The role of palliative care in accountable care organizations. Am J Manag Care. 2015;21(6);(suppl):S212-S214.
  9. Independence at Home Demonstration performance year 2 results [press release]. Baltimore, MD: CMS; August 9, 2016. https://www.cms.gov/Newsroom/MediaReleaseDatabase/Factsheets/2016-Fact-sheets-items/2016-08-09.html. Accessed October 24, 2016.
  10. Center for Medicare and Medicaid Services. Medicare program; revisions to payment policies under the Physician Fee Schedule and other revisions to Part B for CY 2016. CMS website http://www.federalregister.gov/documents/2015/11/16/2015-28005/medicare-program-revisions-to-payment-policies-under-the-physician-fee-schedule-and-other-revisions. Published November 16, 2015. Accessed November 1, 2016.
  11. Conversation stopper: what’s preventing physicians from talking with patients about end-of-life and advance care planning? John A. Hartford Foundation website. http://johnahartford.org/newsroom/view/advance-care-planning-poll. Published April 7, 2016. Accessed November 1, 2016.
  12. S. 1549 - Care Planning Act of 2015. Congress.gov website. https://www.congress.gov/ bill/114th-congress/senate-bill/1549. Published June 10, 2015. Accessed November 1, 2016.
  13. H.R. 5555 - Personalize Your Care Act 2.0. Congress.gov website. https://www.congress.gov/ bill/114th-congress/house-bill/5555. Published June 22, 2016. Accessed November 1, 2016.
  14. Lupu D; American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899-911. doi: 10.1016/j.jpainsymman.2010.07.004.
  15. Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. J Clin Oncol. 2009;27(8):3052-3058. doi: 10.1200/jco.2008.20.1558.
  16. H.R. 3119 - Palliative Care and Hospice Education and Training Act. https://www.congress. gov/bill/114th-congress/house-bill/3119. Published July 21, 2015 and April 5, 2016. Accessed November 1, 2016.
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