This blog is an abstract of an article found in the New England Journal of Medicine titled, Where Americans Die — Is There Really “No Place Like Home”?
In the last 15 years, there has been a slight shift away from dying in a hospital or nursing facility to dying at home.
However, dying at home is harder than you may think. The unfortunate reality is that family caregivers are unprepared for the realities of managing distressing symptoms, including pain, agitation, and changes in breathing, as well as administering medications and providing personal care. It is hard work and can take an emotional toll as one walks with their loved one through the dying process. “As death nears and the realities of dying at home sink in, patient and family’s preferences can change rapidly.”
Patient surveys show that the preferred choice of where to die is at home which is supported by our cultural and social history. With the life-extending advances and the medicalization of the death process, most deaths are still happening outside of the home. In addition to acute care options, such as hospitals, one may choose inpatient hospice and skilled nursing facilities, which can provide 24/7 nursing and personal care. Medications can be rapidly ordered, changed, and administered in these inpatient settings to control symptoms much easier than in a home-care situation. Some more progressive hospitals that have become increasingly sensitive to the needs of the dying and their families, now offer “comfort-care-focused” end-of-life care.
Hospital
Home deaths tend to reduce agency and insurance healthcare costs by removing an expensive hospital stay. Therefore, hospitals have the fiscal incentive to discharge patients as quickly as possible. In return, the burden of expense falls on the families with their unpaid labor and out-of-pocket expenses. “To counterbalance the incentive to discharge patients too early, the Centers for Medicare and Medicaid Services (CMS) penalizes hospitals for high readmission rates”. In addition to the financial incentives, there are also considerations to “quality-measurement programs that create indirect incentives for home death”. CMS’s Hospital Value-Based Purchasing Program penalizes hospitals with high 30-day mortality, measured from the admission date. This penalty program is meant to motivate hospitals to avoid admitting terminal patients because it would increase the hospital’s death rate, thereby affecting the hospital’s death rate. Admitted hospice patients are excluded, BUT US News and World Report do NOT, which has caused confusion with hospital “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
Hospice agencies are affected by financial incentives favoring home death, as well. Hospice agencies are required to take full responsibility for costs related to the diagnosis that qualified a patient for hospice enrollment. Hospital admissions can reduce their profits. “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 the costs of 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.”
Changes to what already exists
1. Policymakers can require more support for patients and families who choose to die at home. Particularly the underserved populations. That may include expanding financial support for caregivers and providing access to trained End-of-Life Doulas who provide lengthy, open-ended access to the dying and their families.
2. Policymakers can decrease the barriers to providing high-quality EOL care in inpatient settings. This may include onsite hospice care in non-acute and acute care facilities and conforming quality measurements across the board.
3. Provide thorough education and “shared decision-making tools that not only elicit patient preferences but also assess patient and family needs to match patients to appropriate support and care settings”.
These changes would shift the financial burden away from families directly, and toward the government and other payers to provide a “good death” and high-quality end-of-life care through the dying process. So, wherever one decides to take their last breath, the focus is on maximizing the quality of time spent with their dying person.
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