Hospice Patients Alliance: Consumer Advocacy


(provided at home)

Most people in the U.S. think of hospice as a resource to help the terminally stay at home to die. Hospice has been oriented around home-based care in the United States. In England, hospice started out as a facility-based service with most patients entering a facility. Now, in both countries there is movement toward a middle ground where patients and families can access services of both types, depending upon their wishes. If you choose to stay home, the hospice must provide services to you in your own home. One exception to this rule is if the hospice is so small (less than 7 employees) and is in a rural/non-metropolitan area, and does not have the staff to provide continuous nursing care in your home. For most hospices, it must provide the service. If it does not, a violation of the standards has most likely occurred.

In the U.S.A., there are four levels of care that are "required services" which must be provided under specific circumstances. The four levels of care are: ROUTINE HOME CARE, RESPITE CARE, INPATIENT CARE AND CONTINUOUS NURSING CARE (in home). Continuous around the clock nursing care in your own home is your right if the patient is having symptoms which are severely "out of control." This standard of care applies whether you reside in your own home in the community, a foster care home, assisted living facility, apartment or even a nursing home — all of these locations are considered "your own home." This is one of the advantages of signing up for hospice, and you're entitled to these services.

In a nursing home, if you sign up for hospice care, and the symptoms become uncontrolled, the hospice must provide extra staff to assist and make sure that the patient comfort is regained and symptoms are controlled. This is especially important in nursing homes when the patient is in severe pain, because nursing home staff are often reluctant to administer the strong narcotic pain medications needed to control severe pain. Many of the nursing home staff have not been trained in dealing with these medications and do not understand severe pain or how to control it. Competent hospice staff do, and they should be at the patient's bedside making sure the patient is kept comfortable. Whether or not the patient is covered by Medicare, Medicaid, or private insurance, the standard for a licensed and certified hospice is the same.

Understanding the four levels of care is crucial to your understanding what services you are entitled to receive. When a patient enters hospice, the patient's condition must be evaluated by a registered nurse (not a licensed practical or vocational nurse LPN or LVN), who in consultation with the attending physician and other staff if appropriate, will prepare an initial "Plan of Care." If you choose to stay at home and there is no current "crisis" due to uncontrolled symptoms or other situations, the patient is placed at the "routine home care" level of care. Routine home care services include periodic visits by the registered nurse, home health aides, social workers and counselors as required by patient and family need.

When symptoms go severely "out of control" and the symptoms cannot be controlled by routine home care services with periodic visits and consultation with the physician, if you choose to stay home, the hospice must provide around the clock nursing care in your own home so long as the symptoms remain severely out of control. The idea is that regular adjustments are made in the medications' dosages, or intervals of administration, or other treatments, to get pain or other symptoms under control. Medication changes are made as well that are aimed at relieving those distressing symptoms.

The regulations state that the hospice must provide this continuous care for 8 to 24 hours of the day so long as the symptoms are severely out of control. If they can get the symptoms controlled and the patient comfortable within 8 hours, then they can stop the continous care then and the patient's status is changed back to "routine home care." However, the hospice staff must make a "good faith" effort to control the symptoms at home! They normally cannot force you into their hospice facility against your will by saying they need to do this to get the symptoms under control (this has happened to some patients who wished to die at home).

These continuous nursing services are based on patient and family need and must be staffed by licensed nurses at least 50% of the time. This means that if you get 24 hours of nursing at home, then at least 12 hours must be directly provided by a licensed nurse, not a home health aide! If 8 or 12 hours of continuous care, then it means 4 or 6 hours are provided by a licensed nurse, not an aide.

Home health aides cannot draw up and give medications, especially controlled substances such as narcotics for pain relief. If the patient requires these medications, licensed personnel or the family must give them. In some agencies and states, the aide can give such medications if they are already drawn up, or dispensed for individual doses by a licensed nurse beforehand, with family and agency approval.

Types of symptoms that might require continuous nursing care at home include uncontrolled:

Severe pain
unrelenting nausea and vomiting
severe bowel impaction/intestinal blockage
acute "terminal restlessness," psychosis, or agitation
acute respiratory distress
and many other symptoms.

If you are covered under Medicare or Medicaid, regulations state that the hospice must provide Continuous nursing care for brief periods in a good faith effort to alleviate the crisis. The hospice can then re-evaluate the situation, and may continue the care if symptoms are still uncontrolled. If you are covered by private insurance, most likely your insurer covers Continuous nursing care in the home; the hospice must provide the care in your own home in that case. Many private insurers will pay for continuous nursing care in your own home for periods longer than 3 days.

What if the hospice then says that it "doesn't have the staff" to continue the care in your own home? Well, the hospice is allowed to subcontract out nursing services to another agency (such as a home health care agency), but it must provide some orientation to hospice care to the agency. You need to insist that your wishes are respected and honored by the hospice. It is important for hospices to have an ongoing relationship with another home health care agency if it is foreseeable that a need may arise for subcontracted nursing services.

Remember, it's the "squeaky wheel that gets the grease." So, if you plan on staying home to be with family, make sure your wishes are clearly known to your case manager, social worker and attending physician. Don't let anyone manipulate you against your will into a facility! Insist that your legal right to continuous nursing care services be honored and that you get the services you are entitled to receive. Whether it's Medicare, Medicaid or private insurance, you and the general public have paid for this care through taxes or premiums.

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