Hospice Patients Alliance: Consumer Advocacy


Keeping The Terminally Ill Patient At Home
(Making It Happen)

If your loved one wishes to stay at home up till the very end, then you need to make that wish clearly known to your RN casemanager, the social worker, your physician and any other hospice staff who inquires about your wishes. If there are other family members available to help out, discuss this decision with each other, and make sure that all family members are working together toward your goal.

Hospices can provide services which help during part of the day. At the Routine Home Care Level of Care, the hospice would be sending out Home Health Aides to help with bathing, dressing, basic bedside care and activities of daily living. They can sometimes send out home service aides to help with housework or cooking and other tasks. Volunteers from the community who serve at your hospice can also spend time with your loved one, freeing up time for you to go out if needed, or just to get a break from caregiving. The RN casemanager and other nurses will be visiting periodically during the week to evaluate your loved one's condition, monitor for any changes, and to make sure your loved one is getting the medications and services needed meet his or her needs.

However, in some cases, you should be prepared for hospice staff who might attempt to convince you to bring your loved one to the hospice facility. While this may be appropriate for some patients, if you really want to keep your loved one home, you can. You, as patient or family/caregiver, have rights to choose to stay home, and nobody can force you to enter a facility against your will. However, if you do choose to stay home, then you need to mobilize all resources and assistance you can muster to help make it happen. A good first step would be to ask the hospice RN and the medical social worker if she or he knew of other community resources where you could get help to care for your loved one.

What can the family do to help keep their loved one home?

  • The family members can make a schedule of when each family member will be there to provide care so that all hours are covered.

  • You can ask for help from your local church or synogogue. Sometimes it is necessary to be willing to let others help out, if you are to succeed in keeping your loved one in the home.

  • You can ask for help from friend or acquaintances.

  • You can directly hire extra help. Help can come from nursing agencies or other sources. For example, if your loved one does not need "nursing care" all the time, then you could hire "sitters" from agencies or even directly hire people from the community. Some people put an ad in the newspaper letting people know that they would be hiring a helper and specifying the hourly wage they would directly pay to helpers. Many colleges and universities have employment centers for their students who are seeking part-time or full-time work. The students can often work hours that others may not be willing to take, and they usually do not need as high a wage as household "bread-winners" who are trying to support a household and family.

Whether you have the immediate family care for the patient or relatives, or close friends, you will probably need assistance of many sorts. If the family can come together and work together, that is the very best circumstance.

The hospice must meet the care needs of the patient and family unit. 1 The services which are required to be provided include family needs for support and counseling. If symptoms go out of control and the patient experiences uncontrolled severe pain or other symptoms, then the hospice must provide, in most circumstances, what is called "continuous nursing care" in your own home...which is around the clock nursing at home, provided by licensed nurses more than 50% of each day, with the rest of the care provided by home health aides.2

A Registered Nurse (not an LPN) must personally visit the patient to assess his or her condition each day. If the patient's symptoms are brought under control, then continuous care may be discontinued. However, if symptoms remain out of control, the RN may continue to have nursing staff provided around the clock in your home. After three days the hospice will re-evaluate whether continuous nursing care in the home can be continued. Continuous nursing care may also be provided when the patient is actively dying and very near the end.

The hospice will help you learn how to care for the patient at home. The Registered Nurse will teach you about the medications to be given and how to give them. If you have questions about your loved one's care after normal business hours, you can always call the hospice's "on-call" nurse. Whatever the situation, the hospice staff are experts in handling the types of situations that come up. There is much information available that can help you keep your loved one at home. Read whatever literature the hospice provides and ask questions. Discuss your wishes among yourselves as a family and with the hospice staff. The more you communicate, the better the outcome will be.


1 According to federal regulation 42 CFR 418.58(c) the hospice's Plan of Care "must state in detail the scope and frequency of services needed to meet the patient's and family's needs."

2 42 CFR 418.204 states that, "Nursing care may be covered on a continuous basis for as much as 24 hours a day during periods of crisis as necessary to maintain an individual at home....A period of crisis is a period in which the individual requires continuous care to achieve palliation or management of acute medical symptoms." 42 CFR 418.82 states that "Nursing services must be directed and staffed to assure that the nursing needs of patients are met." The hospice must meet your needs for nursing care!




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