A Trial of Concurrent Care: Shedding Light on the Gray Zone

Introduction

The original concept of hospice began in England in 1967 with Dame Cicely Saunder's philosophy of concurrent care, integrating disease-modifying treatment, symptom management, and end-of-life support for patients and their families. Under the assumption that concurrent care would be too costly for the federal government, the budget director for the Reagan Administration argued against this same “all-inclusive” hospice paradigm in 1982 when the Medicare Hospice Benefit became a demonstration project in the United States. ¹ Over the past several years, however, models of concurrent care from Medicare, Medicaid, and private insurance companies demonstrate cost reductions of ∼25% for patients who receive palliative care simultaneously with disease-modifying treatment. In addition to cost savings from reduced emergency department visits and hospitalizations, these models describe improved quality of life and greater alignment of treatment with patients' goals for care.^2–4

Palliative care focuses on aligning the values of the patient with the medical care he or she receives, including treatments with a curative-intent when cure is possible, disease-modifying therapy when progression of the illness can be slowed or halted, and comfort-focused end-of-life care when the burden and side effects of treatment outweigh the possible benefits. The role of palliative care shifts in the setting of hospice, when cure is no longer the focus and the range of available therapies narrows. Often, end-of-life care is in fact disease-modifying, blurring these distinctions. However, palliative medicine's focus on reassessing goals, enhancing quality of life, anticipating and relieving symptoms, and providing support for the family remains the same across the continuum of illness.

Throughout hospice care, patients continue to experience and collect new information about their condition. For hospice-eligible patients with chronic illness, knowledge that their evolving goals would be addressed could ease the decision process about whether or not to enroll in hospice. However, those facets of palliative care that involve informing, addressing, and clarifying evolving goals of care, as well as many interventions that manage distressing symptoms, are often absent in hospice care. The availability of these facets of palliative care is sporadic because covered services vary widely among different hospice agencies. The Medicare Hospice Benefit (MHB) is the predominant source of payment for hospice care, covering over 85% of hospice patients, but the MHB per diem payment structure precludes many costly palliative treatments. In addition, Medicare's Conditions of Participation guidelines allow wide variation in how hospices interpret what constitutes palliative care. Approximately one-quarter of hospices report having “open-access” policies, in which patients can simultaneously receive comfort-focused care concurrently with disease-modifying treatments. Even among this small minority, two-thirds of these “open-access” hospices place restrictions on palliative chemotherapy and radiation therapy.^5,6

To exemplify the need for concurrent care, we present a case of a patient who grappled with the decision of whether to enroll in hospice and later reconsidered her choice when she was able to review and identify her goals of care.

Case Presentation

An 86-year-old woman was admitted to hospice with dry gangrene of her left foot. With a substrate of peripheral vascular disease, chronic atrial fibrillation, class II diastolic heart failure, and early Parkinson's disease, she had been living independently when she presented to her doctor with a thrombosed popliteal artery aneurysm. She underwent thrombolysis and stent placement. Four months later, she developed acute thrombophlebitis and was treated with rivaroxaban. Two weeks later, she developed pain in her left foot and was found to have limb-threatening ischemia. The vascular surgery team concluded she was not a candidate for another interventional procedure and offered amputation. Feeling pressured to choose an “all-or-none” treatment strategy, the patient declared that she wanted to “die whole” and declined amputation. She was referred to hospice for end-of-life care, with the expectation that she would ultimately die of sepsis.

While on hospice care, her pain was controlled with methadone and as needed hydromorphone. Over the next 6 weeks, the patient became increasingly distressed by the sight of the progressing gangrene. She dreaded the prolonged period of time in bed, watching her health deteriorate over months, waiting for her foot to “turn to powder.” She struggled with her decision and asked the hospice team for help in determining possible options.

The team met with the patient to review the likely outcomes of amputation, including the perioperative mortality risk, the possibility of phantom limb pain, and her rehabilitation potential. She understood that an amputation would not cure her underlying vascular disease. After identifying her evolving goals of care, the patient reconsidered the possibility of amputation and asked for the team's help in pursuing surgery. She revoked hospice, underwent a successful below-the-knee amputation, and her goal now is to continue rehabilitation and function independently once again.

Discussion

When enrolling in hospice, patients are often faced with a dilemma that they feel is a tragic choice—giving up potentially disease-modifying therapy for hospice services. The current hospice eligibility criteria leave an increasing percentage of the US population, particularly individuals with chronic disease, in a gray zone, representing an expanding cohort whose needs are complex and evolving, often requiring an ongoing reassessment of goals of care, and treatment based on those goals, concurrently with end-of-life care. This group includes patients with end-stage organ disease awaiting transplantation, people with a serious illness deciding whether or not to pursue treatment, and those with stage IV cancer being assessed for a clinical trial. It also includes the increasing proportion of the population with dementia, the admitting diagnosis in ∼15% of hospice patients, whose life expectancy may even improve while on hospice because their symptoms are treated, and their caregivers are given support and guidance. ⁷

The growing challenge of providing end-of-life care for patients in the gray zone has four major causes. First, in the 34 years since Medicare designed the guidelines for hospice eligibility, an expanding range of new medical treatments for managing chronic conditions requires clinicians and their patients to deliberate more carefully among the various benefits and risks these options provide. Second, not all hospice reimbursement systems have kept pace with evolving patient needs. Even when services could theoretically be considered hospice care—those for people with end-stage disease for whom there is no further curative therapy and only comfort-focused treatments remain—few hospices can afford the interventions needed to manage their patients' most distressing symptoms. Palliative treatments—such as blood transfusions for people with transfusion-dependent hematologic malignancies, radiation therapy for those with symptoms from inoperable cancer, and thoracenteses for patients with pleural effusions and dyspnea—often preclude hospice eligibility and ultimately delay enrollment until it is too late to have a significant impact on patients' remaining quality of life.^8–11 Deciding what is hospice and nonhospice palliative treatment commonly depends on the particular hospice's funding and philanthropy, creating a capricious hospice reimbursement system that cannot uniformly respond to patients' needs at the end of life.

Third, the graying of the population itself has led to a “silver tsunami” of more people living with chronic medical conditions. In the next 25 years, the population over the age of 65 is expected to double, reaching 72 million, the majority of whom will have two or more chronic conditions. ¹² Finally, more research is needed to study the net healthcare cost of concurrent care.^13,14 In a retrospective cohort study, Spettell et al. evaluated the impact of concurrent care on the mean number of hospice days and rates of hospice use; hospice use increased by 70%, the mean number of hospice days increased by over 50%, and emergency department visits, hospitalizations, and ICU stays decreased by over 50%. Based on their findings, the authors suggested, “liberalization of hospice benefits that permit continued curative treatment and removes the limits on hospice benefits is a strategy that is financially feasible for health plan sponsors, insurers and Medicare.” ¹⁵

These challenges—expanded treatment options for patients with chronic medical conditions, lack of reimbursement for palliative treatments in hospice, an aging demographic and financial feasibility of concurrent care—have made caring for people in the gray zone an imperative. With the adoption of the 2010 Affordable Care Act, more community-based models of palliative care have been developed for people with serious illness living in the gray zone. Accountable Care Organizations (ACOs), Medicare Advantage Plans, and bundled payment programs that cover interdisciplinary outpatient palliative care are emerging and demonstrating remarkably improved outcomes. In a recent study on the impact of home-based palliative care in an ACO for patients with serious illness, hospice utilization increased 35% and the median length of stay on hospice increased 240% for those patients who had the support of palliative care compared to those with usual care. ¹⁶

In their 2015 report to Congress, Medicare noted that only 47% of their hospice-eligible beneficiaries enrolled in hospice. Of this half that did enroll, over a third was on hospice for less than 1 week. The Center for Medicare and Medicaid Services (CMS) reported, “This data reflects the struggle in having to choose … during these difficult times.” ¹⁷ In response to this struggle, as of January 2016, Medicare implemented the first of a two-phase model to provide hospice supportive care concurrently with continued disease-modifying treatments of the terminal illness by the patients' primary clinicians. This Medicare Care Choice Model Initiative is for hospice-eligible beneficiaries with advanced cancer, COPD, congestive heart failure, or HIV/AIDS. CMS is studying whether this model will improve quality of life for patients and their families, enhance access to hospice, and reduce overall Medicare expenditures. Over the past 6 months, the response to this concurrent care model has been so enthusiastic that CMS has expanded the number from 30 to 141 hospices across the country and increased the duration of the trial period from 3 to 5 years.

However, with only 0.01% of the National Institute of Health's budget dedicated to palliative care research, we are far from determining how to best meet the complex needs of this vulnerable population. ¹⁸ Future research exploring the impact of concurrent care on healthcare use and expenditures, clinical outcomes, and quality of care is a pivotal next step in determining how to best care for this aging population with advanced chronic disease. In the meantime, we propose the TRIAL framework as a tool to help manage hospice patients with serious illness.