Sophia Bernazzani is a health care journalist. She has a background in healthcare and previously worked in health marketing and advocacy. She's passionate about nutrition and sustainability and studied global public health at the George Washington University.
Individuals facing end of life-whether that be for themselves, or a family member-encounter an array of challenges when attempting to decide among the end-of-life care options that are available. Health care professionals sometimes struggle with providing guidance, as well.
Individuals facing end of life—whether that be for themselves or a family member—encounter an array of challenges when attempting to decide among the end-of-life care options that are available. Healthcare professionals sometimes struggle with providing guidance, as well.
End-of-Life Care Options
Hospice care is for individuals who have been diagnosed with a terminal illness and are certified as having a life expectancy of 6 months or less. Patients can receive hospice care in various settings—including at home, the hospital, a long-term care facility, or a free-standing hospice facility. Care is focused on comfort—not on recovery—and is provided by an interdisciplinary team that addresses physical, psychosocial, and spiritual needs.
For those who are eligible, care related to the admitting diagnosis to hospice is covered under the Medicare/Medicaid Hospice Benefit. Private insurance may cover some costs, depending upon the policy. If there is a cost to patients or families, it is typically based on a sliding scale fee structure—however, hospices cannot refuse care due to a patient’s inability to pay.
Although hospice care always includes palliative care, individuals with severe illness who require pain and symptom management—but do not necessarily have a life expectancy of 6 months or less—can benefit greatly from stand-alone palliative care. Palliative care programs that are separate from hospice provide comfort care, but offer the option of a continued focus on curative care. Services can be received in any setting—with support provided by an interdisciplinary team of healthcare professionals who are palliative care experts and skilled in discussing end-of-life care goals.
Palliative care is covered in the same way as other medical services. Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care costs. Studies of hospitalized patients show that when patients are receiving care from a palliative care team, they are less likely to end up in the intensive care unit—which better aligns with end-of-life preferences for many patients and decreases hospital costs.
The ability for individuals to benefit from home-based care is largely dependent upon whether they have the needed resources to receive care in this setting. This is intrinsically linked with the patient’s goals for care, the patient’s condition, and the amount and quality of caregiving support available. There are numerous benefits for patients who receive end-of-life care at home, including the ability to remain in a familiar and comfortable setting—and the ability to enjoy more autonomy regarding care, visitors, and environment.
The costs for home-based care are highly dependent upon the type, intensity, and frequency of care that is needed. Care may be provided by hospice, community-based palliative care programs, home health agencies, professional caregivers, and family members. Payment sources are dependent upon care needs and eligibility, and include Medicare and Medicaid, private and long-term care insurance, the Department of Veterans Affairs, and patient and family resources.
If not covered by other sources, patients and families often cover the costs of home health aide and homemaker services—both of which can be approximately $20 per hour.
Long-term care facilities
Long-term care facilities include assisted living and skilled nursing facilities—both of which are appropriate for individuals who require higher levels of support than can be provided in the home setting. They can meet a wide range of care needs—with skilled nursing facilities offering the higher level of care.
Payment sources include long-term care insurance, Medicare (rehabilitation only), Medicaid (covers room and board, if eligible), and patient and family resources. Long-term care costs can be quite a burden for patients and families, and vary depending upon region and individual needs. In 2015, costs averaged over $43,000 annually for assisted living, and over $80,000 annually for a semi-private room in a skilled nursing facility.
Hospital-based care is appropriate for individuals who require and desire a more intense level of care, which may include specialty and general inpatient units, as well as the intensive care unit. Benefits include having medical personnel immediately available 24/7 and the highest levels of care available.
Although some level of coverage is available through Medicare, Medicaid, and private insurance, costs can soar quickly. This is something that patients and families have very little control over—and little awareness of, until their portion is due. That balance can be quite significant—depending upon the policy and coverage provided.
Benefits of Advance Care Planning
To help ensure that the best option is chosen, advance care planning is critical to ensuring that both caregivers and health care providers know what a patient’s wishes are regarding the various end-of-life options available. To learn more, visit the Nursing@Simmons guide to end-of-life care.