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

Sharon Pearce
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.
EVERY DAY, 10,000 AMERICANS 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.

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