Hospice Patients Alliance: Consumer Advocacy


Hospices must provide adequate nursing care to meet the needs of the patient.1 That is the law. Most hospices will try to provide adequate care to help you and your loved one through this difficult time. The RN case manager will work hard to make sure everything you need will be in place: adequate staff, equipments, supplies and medications. She will work with your Attending Physician to get everything ordered right from the time your loved one enrolls in the hospice program.

Hopefully it will not be a problem for you, but if you are not getting the help you need from your hospice, you need to speak up and let them know you are aware of this standard. All nurses, including hospice nurses, are trained to provide care according to the accepted standards of practice within the nursing field. Standards of nursing practice and the "Code for Nurses" can be found by contacting the American Nurses Association or your State's nursing association. Your State's nursing association can be accessed by calling telephone listing information for the capitol of your State. (See "Links to Other Important Resources" - "American Nurses Association," "State Nursing Associations" and "RN Magazine").

The nurse's license authorizes her to perform professional assessments of her patients, create nursing plans of care, perform many skilled nursing procedures, provide all necessary aspects of nursing bedside care, and many other tasks. The nurse's license requires her to make sure the patient's needs are met. The Registered Nurse is authorized to supervise, direct and educate other nursing staff with less training.

Nursing Services in a Hospice Facility

If your loved one is placed in a hospice facility, an RN must be physically at the facility every shift, 24 hours in each day. If you do not know the titles or qualifications of your hospice's staff, you need to ask. It is reasonable to request that staff wear I.D. badges or tags to identify the name and professional status of each nurse. The information you receive from a licensed nurse should be much more reliable than information provided by nursing assistants or volunteers at the facility. It is sometimes difficult to know who the licensed staff are, because some hospices may allow staff to wear casual "street dress" to make for a more home-like atmosphere.

Federal regulations state that for a hospice that provides care in its own inpatient facility, "The facility provides 24-hour nursing services which are sufficient to meet total nursing needs and which are in accordance with the patient plan of care. Each patient receives treatments, medications, and diet as prescribed, and is kept comfortable, clean, well-groomed, and protected from accident, injury, and infection." "Each shift must include a Registered Nurse who provides direct patient care." (See 42 CFR 418.100 subpart a). If your loved one is in a hospice facility, according to the law, the hospice must provide adequate staff to keep all patients clean, well-groomed, and protected from accident, injury or infection, and to provide all the care needed to meet your loved one's needs!

Nursing Services at Home During A Crisis

Hospices are required to provide nursing services in your own home when your loved one experiences a crisis! Symptoms which might cause a "crisis" can vary:

  • severe pain out of control,

  • respiratory distress,

  • uncontrolled agitation (which can be common in the terminally ill),

  • seizure activity

  • uncontrolled vomiting or bleeding,

  • the active phase of dying (at the very end)

Continuous around-the-clock nursing is a specific level of care within hospice which must be provided if needed. This level of care is provided when the hospice provides the nursing staff which is adequate to meet the nursing needs of your loved one, when 8 or more hours of continuous nursing are provided in a day, and when at least 50% of that nursing care is directly provided by an LPN or an RN in your home.

If a crisis is occurring, then the nursing staff must remain in the home until the crisis is resolved through nursing and medical interventions. The RN case manager will be very closely monitoring the patient's condition and contacting the attending physician as needed. If your loved one is determined to stay at home to die, and a crisis occurs, make sure the hospice provides this continuous nursing care in your own home. Some hospices make it a practice to use a crisis in order to illegally manipulate patients into the hospice's own inpatient facility where they collect more money for room and board. The family is never told that continuous nursing care could be provided at home, and the family is told that there is only one option: transfer your loved one to our facility where he can get the care he needs...they don't tell you the hospice is required to provide care at home and try to control symptoms there, if the patient wishes.

The Code of Federal Regulations (42 CFR Section 418.204) specifically 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. Either homemaker or home health aide services or both may be covered on a 24-hour continuous basis during periods of crisis but care during these periods must be predominantly [licensed] nursing care. A period of crisis is a period in which the individual requires continuous care to achieve palliation [relief from the symptoms] or management of acute medical symptoms." Continuous Home Nursing care is a covered benefit in hospice; you and your loved one are entitled to it!

Licensed Practical Nurses

The Licensed Practical Nurse can perform almost all nursing procedures, but is not technically authorized to supervise or direct other nurses with lesser training. Even if an RN is not physically present when LPN's provide care, the RN case manager is responsible for the care being provided to the patient by other nurses under her supervision. The LPN's and Nursing Assistants or Aides all work under the license of the RN. Only RN's or LPN's can give medications to patients.

Home Health Aide and Homemaker Services

Hospices must provide adequate home health aide and homemaker services to meet the needs of the patients. 2 Aides may assist the patient with general Activities of Daily Living (ADL's) like bathing, feeding, dressing, and so on. Sometimes the family is unable to give the bath, or doesn't know how to deal with certain obstacles to bedside care caused by the patient's deteriorating condition, weakness or disability.

Hospice aides are not licensed to give medications to patients.3 Generally speaking, only if an Aide has attended a State-approved training program in medication administration, only then can an Aide legally give medications to a patient. The family can always give medications to the patient (if approved to do so by the physician), but in most cases an Aide is not normally allowed to do so. If a hospice sends out Aides to provide bedside care, that is appropriate. If medications need to be given, either the family must give the medications or the hospice must arrange for LPN's or RN's to give the medication.

If an Aide is being sent out when she is the only person who will be giving medications, she must have special training in medication administration or there is definitely a problem (a violation of the standards). Because home health aides are not trained in the use of medications, they do not have the knowledge base to properly assess a patient, determine when a medication may need to be adjusted in dosage or if it is ineffective. RN's and LPN's are trained to recognize the need to call the physician for new orders regarding medications. Hospices may save money by sending out Aides when licensed LPN's or RN's are required under the law, but for your loved one to receive the very best care, you need to make sure LPN's and RN's are providing care when there are difficult or emergency situations occurring. In a crisis with uncontrolled symptoms, the hospice must send out an RN or LPN to assess the patient. See the laws on hospice at: 42 Code of Federal Regulations ch. iv. Part 418.

Professional Competence and the Hospice Nurse's Role

Hospice nurses are required to maintain their professional competence, follow the Code of Ethics for all nurses and provide care which meets the standards of care. All nurses are required to enroll in programs of continuing education, and all home health aides must attend regular inservices at the hospice for training. Hospice nurses, like all nurses, are intermediaries in communicating the patient's status and needs to the Attending Physician. Because of the nature of hospice, the nurse's role is expanded and becomes even more important to your loved one. The nurse may, in specific situations, start giving medications approved by the physician in the Standing Orders.

In addition, the hospice nurse becomes the "eyes and ears" of the physician, telling the physician what is occurring, what the vital signs are, what symptoms have arisen and generally providing all information necessary for the physician to make appropriate medical orders for the patient...based on the information given by the nurse. All nursing personnel must regularly report to the RN case manager, and the RN case manager must regularly report to the Attending Physician...especially if the patient's symptoms are not relieved, ...especially if the patient's pain is not relieved. It is important for you to clearly notify the RN case manager about any needs or problems your loved one may be experiencing.

1 The U.S. Code of Federal Regulations (42 CFR Section 418.82) states: "The hospice must provide nursing care and services by or under the supervision of a registered nurse.
a) Nursing services must be directed and staffed to assure that the nursing needs of patients are met.... [emphasis added]
c) Services must be provided in accordance with recognized standards of practice."

2 The U.S. Code of Federal Regulations (42 CFR Section 418.94) states: "Home health aide and homemaker services must be available and adequate in frequency to meet the needs of the patients....A registered nurse must visit the home site at least every two weeks when aide services are being provided, and the visit must include an assessment of the aide services."

3 The U.S. Code of Federal Regulations (42 CFR Section 418.96, subpart c) states: "...drugs and biologicals are administered only by the following individuals: (1) A licensed nurse or physician, (2) An employee who has completed a State-approved training program in medication administration, (3) The patient if his or her attending physician has approved. (4) Any other individual in accordance with applicable State and local laws. The persons, and each drug and biological they are authorized to administer, must be specified in the patient's plan of care."

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