THE AFFORDABLE CARE ACT IMPACT ON END-OF-LIFE CARE
The Affordable Care Act (ACA) provisions addressed 3 specific domains of end-of-life care: (1) expansion of concurrent hospice and oncologic care, (2) payment reform at the end of life, and (3) quality improvement (Table 1).
Concurrent Hospice and Oncologic Care
Several prospective randomized clinical trials have demonstrated that integrating specialty palliative care with standard oncology care in adults leads to significant improvements in quality of life and care without a survival decrement.7–10 In addition, the improved outcomes associated with early, concurrent palliative care likely lead to reduced health care spending and utilization in both inpatient and outpatient settings.10–13 In response to these data, the American Society of Clinical Oncology released a clinical practice guideline recommending the provision of early, concurrent palliative care for all patients with advanced-stage cancers.14,15
Hospice is one of the largest providers of palliative care in the United States. However, one of the largest barriers to hospice enrollment is that patients are often forced to choose between receiving hospice or disease-modifying treatments (e.g., chemotherapy).16,17 Some limited pilot programs, which have tested the provision of concurrent hospice and disease-modifying therapies, have documented increased hospice lengths of stay, decreased utilization of hospital-based care, and stable to decreased costs.18–20 Despite this, the reality is that few patients currently have access to concurrent hospice and oncologic care.
The prospect of forgoing potentially life-extending treatment to enroll in hospice is particularly distressing for parents of children with serious illness.21 While the need for palliative care in this patient population is well documented, prospective evidence supporting concurrent pediatric palliative and oncologic care for children with poor prognoses is lacking.22–24 However, results from several studies suggest that early palliative care consultations improve the detection of untreated symptoms, enhance communication and documentation of advanced care planning, and increase the likelihood of hospice enrollment and avoidance of in-hospital deaths.25–29
In 2000, the American Academy of Pediatrics issued a report recommending implementation of an integrated palliative care approach for children with life-limiting illness.30 In 2003, the Institute of Medicine report When Children Die recommended that both public and private insurance plans reimburse health care providers for providing comprehensive palliative care.31 Despite these recommendations, coverage of concurrent disease-modifying therapy and hospice was limited prior to passage of the ACA.
Section 2302 of the ACA requires that programs for children enrolled in state Medicaid programs or Children’s Health Insurance Programs (CHIP) must allow patients to receive hospice care with disease-modifying treatment.32 The federal provision applies to children who are (1) younger than 21 years, (2) terminally ill (defined as having a prognosis of <6 months to live), and (3) eligible for the state’s Medicaid programs or CHIP. The concurrent care waiver has the potential to have a significant positive impact on the quality of end-of-life care for children with life-limiting illnesses. Most of the palliative care provided under the ACA is delivered in hospice and community settings.33
In addition, while concurrent hospice care for adults was not stipulated in the ACA legislation, several demonstration programs stemming from ACA-funded institutes have expanded the evidence base for concurrent palliative care. Perhaps the most significant was the Medicare Care Choices Model (MCCM), established through the Centers for Medicare and Medicaid Services Innovation Center (CMMI).32 The MCCM was the first Centers for Medicare & Medicaid Services model to offer “open-access hospice,” allowing patients with a life expectancy of less than 6 months to receive concurrent disease-modifying therapies and hospice services.34 There are 141 hospices currently participating in the model—half of which were randomly assigned to start offering “open-access hospice” in 2016, and half of which will start in 2018. While results from this evaluation are forthcoming, the MCCM will provide the largest prospective evaluation of providing concurrent hospice and disease-modifying therapies.
Payment Reform at the End of Life
The increasing cost of cancer care has made payment reform in oncology a national policy priority, particularly at the end of life. The National Cancer Institute estimates that the cost of cancer care will exceed $174 billion in 2020 due to growing numbers of cancer survivors and the aging US population.35 In 2009, the American Society of Clinical Oncology released a statement calling, in part, for research into payment reform and alternative payment models.36 A recent systematic review suggests that facilitated advanced care planning reduces costs of care at the end of life for inpatients by up to $65,000 per patient.37 However, there are few prospective evaluations of alternative payment mechanisms in end-of-life cancer care.
The ACA mandated hospice service payment reform with the goal of reducing barriers to access to high-quality hospice care.38 It also called for the testing of value-based purchasing for hospice. In response, Centers for Medicare & Medicaid Services implemented 2 different per diem payment rates for hospice services, which lowered reimbursement rates for patients enrolled in hospice for more than 60 days and curbed incentives for long-stay hospice patients.39(p1)
Through CMMI, the ACA has also spurred investigations of novel payment mechanisms for end-of-life and cancer care. Based on previous models of coordinated oncology care, CMMI devised the Oncology Care Model (OCM), which provides a fixed Monthly Enhanced Oncology Services payment for participating practices to assist in coordinating care for oncology patients.40 While the OCM is explicitly for Medicare beneficiaries currently receiving chemotherapy, all patients must have a care management plan that includes information about prognosis, treatment goals and expected response to treatment, and advanced care plans, including advanced directives and other legal documents.40,41 Moreover, key OCM quality measures include hospice admissions at least 3 days before death and patient experiences with care. Many have argued that similar performance-based and bundled payments specifically for end-of-life care could improve value.38,42 Similarly, the ACA included integration and participation of palliative care and hospice programs in demonstrations of other delivery and payment models, such as accountable care organizations and patient-centered medical homes.42
Quality Improvement in End-of-Life Care
Several studies have shown significant variation in quality of care provided by different hospice and end-of-life care providers.43,44 Hospice visits in the last days of life vary substantially by race, hospice program, and geographic region of the country.45
The Hospice Quality Reporting Program was mandated by the ACA, ensuring public reporting of hospice quality data. Under this provision, the failure to submit quality data results in a 2% reduction in hospice reimbursements for the following year.46 Such reporting shines a spotlight on many important aspects of hospice care, including the patient experience of care and lengths of hospice stay. However, there are no explicit payment incentives tied to achieving quality metrics, only for the reporting of metrics.
POTENTIAL GAPS IN ACA COVERAGE OF END-OF-LIFE CARE IN CANCER
While there are several provisions within the ACA that have a positive impact on end-of-life care for patients with cancer, multiple gaps remain in the ACA’s specific legislation. First, ACA provisions around meaningful use do not require robust documentation of advanced care planning47 or provide reimbursement to clinicians for these services. This is particularly important for patients with cancer at the end of life, including minorities who have low rates of early advanced care planning documentation.48–51
The ACA’s hospice provisions also include section 3401(g), which mandates a productivity adjustment factor designed to reduce hospice reimbursement rates for the reported purpose of ensuring Medicare sustainability. However, hospice costs represent a very small proportion of overall spending for patients with cancer and are dwarfed by inpatient expenditures.52 In addition, section 3132 of the ACA mandates that patients enrolled in hospice for more than 6 months must have a face-to-face visit with a physician or nurse practitioner to confirm that they still meet hospice enrollment criteria, in light of concerns about overall costs, fraud, and abuse among for-profit hospices; hospices with high recertification rates are subject to medical review. While protecting against fraud is undoubtedly important, 1 unintended consequence of this provision is an additional burden imposed on physicians and nurse practitioners, particularly in rural areas, where face-to-face visits come with significant transportation and other costs to hospices.53
IMPLICATIONS OF ACA REPEAL
Risk Sharing and Payment Reform
As President Trump’s administration advocates for ACA repeal in favor of shifting responsibility for health care funding to the states, health care organizations, clinicians, and citizens will be expected to take on more risk. If this occurs, patients and families will likely face narrower health plan networks, whereas deductibles, copays, and insurance costs may rise.54 While coverage for preexisting conditions may remain intact, other out-of-pocket costs are likely to increase if the ACA’s Medicaid subsidies are replaced with Medicaid block grants to states or individual flat tax credits based on age.55
The loss of concurrent palliative care and hospice options for children and adults, either through repeal of the aforementioned section 2302 and/or repeal of CMMI and its MCCM, could adversely impact seriously ill individuals with cancer. A shift to a 2-payer model, where concurrent care is delivered via a blend of primary commercial and secondary managed Medicaid insurance coverage, may be necessary for children who desire concurrent care, particularly as the CHIP funding expires in 2017.21,54 Additional “carve-outs” may also be necessary for patients with life-limiting cancers to receive concurrent disease-modifying chemotherapy and hospice care.
In addition to insurance expansion—which provides key access to care for individuals who were previously uninsured—there are many direct provisions of the ACA that increase insurance coverage and/or access to affordable hospice and concurrent palliative care for patients with cancer. Despite gaps in hospice reimbursement policies and insufficient reach of demonstration projects, a repeal of the ACA will likely increase the costs of end-of-life care for both patients and payers, while reducing quality. As our health system strives to become more patient centered, policy makers and providers must consider the implications of ACA repeal and protect those with the most to lose.
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