Practical Ideas for Improving the Quality of Hospice Care

Abstract

“Jerome” has stage 4 cancer and multiple comorbidities. During his fourth hospital admission within 6 months, he said to his wife “Marilyn,” “I don't want to be in the hospital anymore. They can't fix me. Let's go home.” Jerome was discharged and enrolled in home hospice care. On February 6, 2015, Jerome's hospice nurse made a routine home visit, and one of us (Berry) came along. Jerome was watching television in his favorite living room chair, his dog on his lap and a laptop computer within easy reach. He told us that he eats meals at the kitchen table, uses an electric scooter to visit a neighborhood friend, and plays video games with a hospice volunteer who comes to the house. Marilyn says, “When we finally got Jerome into hospice, they stopped trying to fix him, and he started to have some quality of life. Hospice is a great alternative. Jerome can be home and still get what he needs.”

Patients like Jerome in the final stages of incurable disease need compassionate, humane, relationship-building healthcare at a time when they are least able to advocate for themselves. That kind of service is the mandate of hospice. Far too often, however, some U.S. hospices underperform, failing to provide an appropriate quality or range of services.¹ Improving the performance of those hospices is a matter of moral urgency, medical effectiveness, and financial consequence—all unified by the goal of fulfilling hospice's foundational duty to support quality of living until the last days of life.

The Current Hospice Landscape

Roughly 1.7 million people in the U.S. received hospice care for a life-limiting illness in 2015. As the number of enrollees grows, so does the number of Medicare-certified hospice providers—now exceeding 4000 nationwide, more than two-thirds of which are for-profit institutions, up from only 30% in 2000.^2–4

Given that for-profit companies now dominate the hospice industry, data on their profit margins are pertinent. In 2013, all freestanding for-profit hospices in the U.S. had a Medicare profit margin of 15.7%, compared with 5.2% for freestanding not-for-profit hospices.³ This difference exists in part because some for-profit hospices provide a narrower range of services by less-skilled staff to a more select group of less-costly or more-profitable patients.^3,5–9

Although it is easy to blame the growing market share of for-profit hospices (chains and nonchains) for shortfalls in quality of care, performance differs substantially within the for-profit sector.⁵ For-profit status does not cause suboptimal hospice care; poor organizational leadership does. The best-managed service companies not only generate financial profit, but also improve the quality of life in the surrounding community, creating what is known as “social profit.”^10–12 For-profit hospices can—and many do—provide excellent care and create social profit while still earning good financial returns.

Raising the standard of care required of underperforming hospices, both for-profit and not-for-profit, would require addressing the shortcomings of specific organizations, thereby improving the broader reputation of hospices and expanding their use. Such reforms would have the crucial effect of helping hospice patients live as well as possible until death, regardless of the tax status of the agency that provides their care. These ends could be achieved by refining regulatory standards for hospices and enforcing them in a targeted manner. Hospices that provide the highest quality care could continue doing their good work, whereas others would have a strong incentive to learn from the high performers' examples.

The Full Range of Care

It is important to ensure that hospice enrollees have access to all four levels of care required by the Centers for Medicare and Medicaid Services (CMS).¹³

1. Most hospices provide routine home care by enabling the nurse case manager to decide, in consultation with the patient and family, what personnel and supportive services are needed and how often those services should be delivered. Given that routine home care is not highly intensive, hospices generally do not skimp on this level of care. However, research shows that, compared with not-for-profit hospices, for-profit agencies spend less on home nursing visits during the last two days of life¹⁴ and employ fewer skilled staff members per patient.^5,8

2. Continuous home care (CHC), for patients who need intensive services during a crisis period of 8–24 hours, consists of licensed nursing care supplemented by a home health aide or social worker. Even though CHC is reimbursed at the highest payment rate of the four care types, compensation may not fully reimburse staffing for the intensive level of care that the hospice must provide, making this level of care an appealing target for cuts by some organizations. A study of 3592 hospices found that only 42.7% offered CHC to at least one patient during the study period. Use of CHC was associated with reduced hospice disenrollment and postenrollment hospitalization. Patients of larger, urban, for-profit hospices were more likely to use CHC,¹⁵ even though Medicare payment contractors scrutinize CHC intensively.

3. Inpatient respite care (a short-term stay in an inpatient facility) is intended to offer relief for the family caregiver. However, the payment rate does not cover all the costs of that respite period, encouraging some hospices to target respite care for cuts in services.¹⁶

4. General inpatient (GIP) care is for hospice patients who need constant skilled nursing support. Many hospice programs provide a high level of GIP care in facilities they own or in leased units (or through other contractual arrangements) within hospitals. However, some hospices restrict access to GIP care by providing it in an inadequately staffed nursing home or by simply discharging patients to undergo acute treatment in a hospital under their Part A Medicare benefit. CMS and the Office of the Inspector General have voiced concerns about hospices that operate mixed acute and residential beds, providing inappropriately lengthy GIP stays rather than care at a more appropriate residential level. A 2012 government study concluded that hospices billed one-third of GIP stays (most often in skilled nursing facilities) inappropriately and that for-profit agencies were more likely than not-for-profit agencies to engage in this practice.¹⁷

When hospices consider their enrollees' needs collectively, they can provide appropriate access to all four levels of care, rather than allowing profit margins to drive clinical decision making.

Fairness in the Patient Mix

Just as hospices need to provide all levels of care, they should serve all types of patients. Some hospices engage in “cherry-picking” by using networks that refer high numbers of patients from long-term facilities and fewer through physician referrals. This results in fewer cancer enrollments, more patients with lower-skilled needs, and more patients who require a long length of stay (LOS), but less-skilled care.^7–9,18 Disenrolling hospice patients (so-called “live discharges”) who require more intensive and costly care directly undercuts the hospice mission; this practice occurs more often in for-profit hospices.^3,5,19 For-profit hospices that are not affiliated with a chain perform worse on questionable disenrollment than for-profit chains do.²⁰

Fairness in How Standards Are Measured and Enforced

Improving hospice care requires a rigorous, targeted approach to measuring and enforcing standards—one that levels the playing field among all for-profit and not-for-profit hospices.

A key element is to strengthen hospice oversight by state health agencies with respect to Medicare. In some states, 10 years may elapse between an initial Medicare certification and a return monitoring visit. We believe that surveillance should be done, in person, at least every 2 years, and that site visits should be unannounced rather than conducted only in response to complaints. In addition, remote evaluation of performance data should occur on a routine schedule. Hospices performing below certification standards should be required to make improvements, submit to recertification, and undergo more intensive assessment until they consistently demonstrate satisfactory performance.

Targeted enforcement is likely to change behavior more effectively than blanket policies, which can burden or even penalize agencies that diligently comply with regulations. Policy recommendations from the National Partnership for Hospice Innovation (NPHI) offer a sound starting point for enhanced CMS measurement and enforcement of hospice performance quality.²¹ The NPHI specifically calls for focused medical review of hospice programs that have:

• unusually high proportions of patients whose length of stay (LOS) exceeds 180 days

• unusually high rates of live discharges

• a patient diagnostic mix that disproportionately favors conditions warranting a long LOS

• failure to provide all four levels of care

• high rates of Medicare Hospice Benefit revocation associated with admission or readmission to a hospital.

Although hospices are mandated to offer key aspects of care,²² not all agencies comply. High-quality hospice programs employ grief and spiritual counselors that serve on interdisciplinary care teams and preside over memorial services for families who lose a loved one. Some hospices, in contrast, neglect to provide chaplaincy services and instead refer patients to community clergy, who often have little or no orientation and training in palliative care. More precise assessment of families' and caregivers' experiences would ensure that these services are provided consistently.

Bereavement programs, another mandated service, can at some agencies consist of handing families a toll-free number for a community bereavement service. Full bereavement services should include direct contact from a qualified in-person grief counselor for those determined to be high risk. Some practical-minded hospices even open up their grief programs to the local community, including survivors served by competitors.

Hospice volunteer services are also mandated at a level corresponding to 5% of clinical services delivered.²³ High-performing hospices welcome volunteers from the community to provide a range of services, such as in-person companionship for patients (including sitting vigil as a patient nears death, particularly if he or she has no family). However, managing a volunteer program consumes human and financial resources, so some hospices underutilize volunteers.

Visit frequency by hospice staff is an important indicator of quality. One study has shown considerable variation in hospice visits during patients' last two days of life, with 12% of patients receiving no professional staff visits during this period. Visit frequency was especially low for African American patients and those dying on a Sunday or in a nursing home.²⁴ Recently enhanced funding for visits by hospice nurses and social workers, called the “service intensity add-on,” should help encourage more visits near the end of life.²⁵

The National Hospice and Palliative Care Organization (NHPCO), with its National Data Set, encourages its members to report visit frequency ratios (VFRs), or estimated days between face-to-face visits, for the entire period of hospice service within each discipline. A VFR of 1.0 would mean a hospice staff member saw the patient, on average, every day. Although hospices should have VFRs of 1.5 or less, some report ratios as high as 14.0.²⁶

The human resources dedicated to clinical care directly influence hospice quality. For example, hospices should have ample nursing staff, calculated in terms of full-time equivalency (FTE). According to the NHPCO, regular benchmarking should show about six patients on census for each nursing FTE. A higher number may indicate problems. The training and credentials of hospice staff who directly serve patients should also be tracked. Measures should include the amount of in-service training provided and the proportion of staff nurses and physicians who are certified as specialists in hospice and palliative care.

Days spent at home during the past 6 months and the last 30 days of life²⁷ should also be assessed. Patients tend to express strong preferences to stay at home near the end of life,²⁸ and unwanted, high-intensity, high-cost treatment may be avoided during this period.²⁹

Finally, measurement and analysis of hospice performance should include relief of physical, psychological, and spiritual suffering. Changes in these variables that evolve from hospital admission to end of life can be measured. Also, honoring patient preferences is integral to the principle of dignified dying. The CAHPS^® Hospice and the Family Evaluation of Hospice Care surveys capture service users' perceptions as an important quality indicator.^30,31

At the 2016 National Summit of the Coalition to Transform Advanced Care, Washington, DC, Dr. B.J. Miller of the Zen Hospice Project stated, “Pick the right enemy. Death is not the enemy. Suffering is the enemy.” Rigorous, comprehensive measurement and enforcement of standards for hospices in general, and for underperforming hospices in particular, would reduce suffering at the end of life.

A Vision for Hospice

The improvements in hospice care that we suggest align with today's overarching trend toward providing equitable, high-quality healthcare services while focusing on long-term benefits for patients. Equitable, targeted enforcement of existing CMS regulations, coupled with our additional recommendations, would encourage all hospices, regardless of tax status, to provide the end-of-life care that patients and families truly need. We strongly endorse the vision for hospice articulated by Dr. Steve Landers, CEO of VNA Health Group:

“…hospice is not about death. It is a practical and tangible way to help people continue to live at home and in the community, to live life to its fullest with dignity and comfort, to live more connected to family, friends, and faith, to live more reflective on one's history and more intentionally about one's legacy. On the hardest days hospice is about fighting tooth and nail to make lemonade from lemons, and at its best hospice makes everyone involved more alive and more human.”³²

Hospice offers compassion, guidance, noncurative treatment, and advocacy for patients and families who need a different kind of health service than curative medical care provides. Well-delivered hospice service promotes a pain-free, peaceful state of being near the end of life while easing the burden for patients' families. Hospice patients deserve a bold, comprehensive, well-resourced approach to raising the quality of care for the entire industry—for-profit and not-for-profit institutions alike.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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