Where Americans Die – Is There Really “No Place Like Home”?

“In 2017, a total of 31% of Americans died at home, making it the most common site of death for the first time in decades. In the United States, we tend to believe that someone who died “peacefully at home, surrounded by family” (as the obituaries put it) has had a good death. Yet reality frequently diverges from this scenario. Unprepared family caregivers are routinely tasked with managing distressing symptoms (including pain, agitation, and dyspnea), administering medications, and providing intimate personal care (including bathing and toileting assistance) to bedbound patients. In other care settings, these tasks are performed by trained clinicians. As death nears and the realities of dying at home sink in, patient and family preferences for home death can change rapidly. [..]

Alternative locations for death, such as freestanding inpatient hospice facilities and skilled nursing facilities (SNFs), can provide around-the-clock nursing and personal care that is particularly critical for certain physically and emotionally burdensome end-of-life needs that are difficult to manage with intermittent home hospice visits (e.g., incontinence or agitated delirium). In these inpatient settings, medications can also be rapidly adjusted or changed to control symptoms. Hospital-based palliative care has grown substantially over the past 20 years, although there are disparities in access. Hospitalized patients increasingly can elect comfort-focused end-of-life care, sometimes in dedicated palliative care or hospice units and with access to palliative interventions (e.g., transfusions and high-flow oxygen) that are rarely available in nonhospital settings.

So why does the notion persist that — in the language of The Wizard of Oz and palliative care researchers — “there’s no place like home” to die? We believe that, in addition to the effects of culturally shaped preferences, financial incentives and publicly reported quality measures influence stakeholders (including insurers, hospital and hospice-agency administrators, clinicians, patients, and families) to view home as a one-size-fits-all destination for death, while failing to adequately consider and support individualized and unpredictable needs, regardless of setting.

Home deaths tend to reduce health care costs by averting expensive hospital stays and transferring costs to families in the form of unpaid caregiver labor and out-of-pocket spending. Payers are aware of these dynamics, and payment policies often discourage hospital death. For instance, insurers typically pay hospitals a lump sum based on the diagnosis-related group, a category that reflects the medical complexity of the patient’s diagnosis (which may be low in end-of-life circumstances), regardless of length of stay. Hospitals therefore have an incentive to discharge patients quickly. Home is often the quickest and easiest discharge destination. To counterbalance the incentive to discharge patients early, the Centers for Medicare and Medicaid Services (CMS) penalizes hospitals for high readmission rates. Patients who are enrolled in home hospice or near death may be expected to die before being readmitted, however, which could attenuate the readmission-penalty disincentive.

Hospitals are also subject to quality-measurement programs that create indirect incentives for home death. The CMS Hospital Value-Based Purchasing Program penalizes facilities with high 30-day mortality, which is counted from the date of admission. This penalty is a strong incentive to avoid hospitalizing patients for what may be a “terminal admission” because it could increase the hospital’s death rate. Mortality also figures prominently in ranking systems used by both CMS and U.S. News and World Report. CMS excludes from ranking-related calculations patients who were enrolled in hospice at any time during the 12 months before the admission, including the first day of the admission, but U.S. News and World Report does not. Staff members who are unaware of exclusion rules may believe it’s safer to avoid admitting patients who are near death — regardless of their hospice status — to preserve the hospital’s reputation.

Hospice agencies, too, face financial incentives that favor home death. Under the Medicare hospice benefit, so-called routine home care is reimbursed at $150 to $200 per day and accounts for 98% of hospice days, according to the Medicare Payment Advisory Commission (MedPAC). Because hospice agencies must take full responsibility for costs related to the diagnosis that qualified a patient for hospice enrollment, hospital admissions can reduce their profits. Hospices can avoid these costs if patients disenroll; however, CMS monitors disenrollments and may investigate hospice agencies with high “live discharge” rates, which gives hospices an incentive to keep patients enrolled and at home.

Medicare’s general inpatient hospice provision pays hospices roughly $1,000 per day to cover inpatient hospice care when symptoms cannot be controlled in any other setting. This level of care accounts for only 1% of hospice days, in part because eligibility criteria are restrictive. Hospice agencies, meanwhile, tend to lose money under the general inpatient care provision but earn profits for providing routine home care. With inpatient care, hospices pay for around-the-clock nurses and aides. With home care, they can maintain lower nurse-to-patient staffing ratios and provide relatively few hours of home health aide services — relying instead on unpaid family caregiving, family-financed out-of-pocket spending, or Medicaid payments for low-income patients.

What changes are needed to provide high-quality end-of-life care in whatever setting best aligns with patients’ individual goals and needs? First, policymakers could increase support for people who choose home death, particularly for underserved populations, including those with low-income status and racial and ethnic minorities. One such step would be to expand financial support for family caregivers. Compensation covering around-the-clock care is unrealistic, but the Veterans Health Administration (VHA) and some state Medicaid programs for paid family leave provide models. Another step would be to change Medicare’s hospice regulations to classify care delivered by home health aides as a “core” service (similar to nursing, social work, and chaplain services), with a minimum number of hours required to be available daily. Still another intervention could involve expanding access to continuous home care, Medicare’s level of hospice care that provides extended in-home nursing services for patients with acute, uncontrolled symptoms, which currently accounts for 0.2% of hospice days.

Second, policymakers could reduce barriers to high-quality end-of-life care in inpatient settings. One strategy could involve increasing access to general inpatient hospice care in nonacute care settings, including freestanding hospice facilities and hospice units within SNFs or hospitals, by loosening eligibility criteria and increasing payments. The VHA embeds hospice units within its SNFs and has less-restrictive eligibility criteria than Medicare for inpatient hospice care. We also suggest aligning all quality-measurement systems, especially the ratings of U.S. News and World Report, with CMS’s system that excludes hospice patients from mortality reporting. This exclusion would need to be well publicized to avoid confusion.

Third, research is necessary to support goal- and need-concordant end-of-life care, with the aim of developing shared decision-making tools that not only elicit patient preferences but facilitate assessment of patient and family needs to match patients to appropriate support and care settings. This research should actively engage groups that have historically been underrepresented in end-of-life studies to account for differences in preferences and to avoid persistent inequities in access to end-of-life care. Finally, a cultural shift that reduces stigma surrounding nonhome death will be needed to ensure the success of these policy changes.

These proposals aren’t cost-neutral; they would shift some burden and expenses away from individual families and toward the government and other payers, with the goal of providing equitable access to high-quality end-of-life care. For some patients and families, there’s no place like home at the end of life; for others, a hospital, nursing facility, or inpatient hospice facility — where staff can manage symptoms and provide personal care, thereby enabling families to be families and maximize quality time together — may be the best place for a good death.”

Full article, MW Wachterman, EA Luth, RS Semco and JS Weissman. New England Journal of Medicine, 2022.3.12