For those who implement an "Aging in Place" plan, hospice care plays an integral part in the planning. First, hospice care is "person-centered care" of the type and kind those who seek to stay home want and need. Hospice is "palliative care", a specialized type of care focused on relief from the symptoms and stress of a serious illness, with the goal being to enhance or improve the quality of life for both the patient and the family. Second, hospice is a benefit paid for by Medicare, meaning that there is no need for "spend down," or planned or unplanned indigence to obtain the care, in most cases. Simply, Medicaid is unnecessary for most hospice benefits.
Hospice Care Improves the Quality of Care and Life
Numerous studies demonstrate that many seriously ill patients and their families receive inadequate care, characterized by untreated pain and physical symptoms, spiritual and emotional distress, high family caregiving burdens, and unnecessary or unwanted treatments inconsistent with their previously stated wishes and goals for care. Hospice care greatly improves the quality of care for patients and their families near the end of life. Palliative care services provided through hospice delivered by a team of professionals, including physicians, nurses, social workers, chaplains, home health aides, and volunteers, to dying patients (patients with a life expectancy of six months or less), who are willing to forgo curative treatments, have been demonstrated to greatly reduce symptoms of distress, improve outcomes for caregivers, provide a high level of patient and family satisfaction, and reduces the use of hospital-based services, including emergency department visits and intensive care unit stays, together with the likelihood of death in the hospital.
Medicare Pays for Hospice Care
The Medicare program pays a daily rate to hospice providers, who assume all financial risk for costs and services associated with caring for the patient’s terminal illness and related conditions. The hospice program is paid for each day the individual is enrolled, whether or not the program visits the client that day. This enables the program to cover other costs, such as palliative care, and management of the terminal condition plus “related services” such as care planning, on-call services, drugs, medical equipment, supplies and transportation. Payments are made based on four levels of care, distinguished by intensity and setting of services:
- Routine Home Care, the most common (98% of all hospice days in 2016). With this type of care, the individual has elected to receive hospice care in his or her residence.
- Continuous Home Care (CHC). This care is provided for eight to 24 hours a day to manage pain and other acute medical symptoms. It is predominantly nursing care and maintains the person during a pain or symptom crisis.
- Inpatient Respite Care. This care provides temporary relief to caregivers by offering temporary care in a hospital, nursing home or hospice facility, where 24-hour nursing personnel are present.
- General Inpatient Care (GIC). This type of care is provided in a hospital, hospice or nursing home when pain or acute symptoms cannot be controlled at home.
The Quality of Hospice Care is Regulated
The quality of hospice care is highly regulated. The Patient Protection and Affordable Care Act mandated a Hospice Quality Reporting Program (HQRP) that required that all hospices submit data on quality measures. Medicare Hospice providers that do not submit data face a loss of 2% of the payment increase they would get for the year under Medicare. The law further required that CMS publicly report on quality measures related to the care provided by hospice programs across the country.
In 2017, CMS released the Hospice Compare website to help consumers compare hospice providers based on their reported quality data. The quality measures that are reported by hospices are based on consumer feedback from hospice patients and their family members on aspects of care, such as communication with family members, training family members to help with care, their rating of the hospice and their willingness to recommend the hospice provider. Additionally, the hospice provider completes the “Hospice Item Set,” which includes information on how the hospice considers and addresses patient preferences, assessments and pain management.
Hospice Care Integrates in Supported Decision-making Plans
Hospice Care fits well in an estate and health care plan that implements "Supported Decision-making" precisely because it serves the objectives of most people who are concerned with and consider more than just themselves. Simply, hospice, like your planning, considers and concerns itself with your loved ones. For example, bereavement support, which is delivered to family members in preparation for and after an individual’s death (for 13 months), considers and is concerned with your loved ones. Medicare does not reimburse for bereavement support. This support is, nonetheless, required by hospice regulations and is a unique and crucial function of the Medicare hospice benefit. Another way of understanding this benefit, is that it is a community-based benefit, for which the government does not pay, but which is available to a patient and a patient's family simply because it is humane!
Because bereavement support is not reimbursed, hospices attempting to cut costs may, admittedly, see it as an easy place to limit services. For example, a hospice may choose to send a letter with a phone number for bereavement care or ask social workers to assume bereavement responsibilities rather than employ a bereavement counselor to meet with and support families. Some hospice providers may even simply refer the families of their patients to other hospice programs for bereavement support, which circumvents their responsibilities and increases the burden on hospices that do offer complete bereavement services.
Fortunately, nonprofit, community-integrated hospices have been shown to be more likely than their for-profit counterparts to provide certain bereavement services, such as support groups and workshops, and to offer services to the community. Many nonprofit, community-based hospice programs provide services, such as group therapy, one-on-one grief counseling and specialized programs like grief camps for children. These hospices often serve as first responders for trauma in their communities, regardless of whether the recipients of the grief support or trauma counseling services have family members who utilized the hospice program. For example, a school that experiences the sudden death of a student may rely on its local hospice to meet with grieving staff, students, and affected family.
Hospice Care Utilizes Volunteers More Likely to Be Concerned with You than with any Other Competing Concern
Why do you trust your spouse, your child, or your most closest friend or loved one, and why do you select him or her as your fiduciary? Chances are that your answer includes a belief that he or she will consider your interests and needs above their own, and certainly above other less important but competing concerns such as cost, or convenience. The people that you have the most trust and confidence in are those who, because of their love and affection, will consider your needs first.
Hospice providers utilize volunteers for this same reasons. Because volunteers are people who volunteer their time, and have no financial or other incentive other than their altruistic desire to "help," they are more likely to consider your needs and wishes as being paramount. These volunteers are usually people who have themselves benefited from hospice care, and having receive the benefit of the selflessness of others, commit themselves to providing that same benefit. Most hospice volunteers will, if asked, share their journey and experiences.
Hospice is the only Medicare benefit that requires community volunteers to deliver a significant portion of patient care hours. Medicare sets a 5% threshold for volunteer involvement. Some providers struggle to meet this threshold, and the requirement is, unfortunately, not well enforced despite being a condition of participation. Of course, oversight is properly more concerned with quality of care provided than ancillary services. Nonprofit hospices are, fortunately, leaders in using volunteers. Moreover, non-profit and for-profit providers that well utilize volunteers often expand the typical volunteer role by creating specialty volunteer-driven programs tailored to the needs of patients and families. These programs include:
Veteran-to-veteran programs that match patients who have served in the military with volunteers who have also served;
- Pet therapy teams, in which registered animals and handlers visit hospice patients to provide companionship; and,
- Vigil programs, which provide around-the-clock care for patients in the final hours of life.
One study noted that, compared to nonprofit hospices, for-profit and government-owned hospices used proportionally fewer volunteer full-time equivalencies as a proportion of total staff. The use of volunteers by providers ensures that hospice programs have ongoing integration with their local communities.
The Choice Between Non- and For-Profit
Whatever the statistics, there are good and bad nonprofit and for-profit hospice care providers. Among the "Supported Decision-making" objectives, then, should be the evaluation and selection of competing care providers. Only by understanding hospice care, hospice providers, and the competing costs and benefits of different providers can you, and those who make decisions on your behalf, effectively consider and evaluate hospice care, and its providers. Utilization of government data, such as is available through Hospice Compare, formal and informal interviews, inspections, and visits, as well as advice and counsel of professionals, such as with physicians, health care professionals, socials workers, and elderlaw attorneys, can ensure a more appropriate selection of provider.
