Hospice Patients Alliance: Consumer Advocacy


Hospice care is a special kind of health care, devoted to respecting the wishes of the patient, family /caregivers or the bereaved. Hospice is based on a wholistic approach that provides a wide range of services and focuses on the patient's and the family's needs as well. Hospice care approaches the patient as a person, not "just a patient." What you need and want is central to quality hospice care. Good hospice care is not a forced approach where health care workers tell you what choices you have to make; hospice is about respecting the person, the family and working with you to help you achieve your goals. What your goals are ... depends upon you, your values, beliefs and individual situation! The hospice staff and your physician must inform you of all options available, all services which may be provided and work with you to create a plan of care that meets your needs.

Hospice philosophy involves respecting the wishes of the patient and the family/caregiver unit. And, you might be surprised to learn that what patients and families want may vary widely from one situation to another. While some patients want pain totally eliminated, others do not want any medication. Some patients wish to remain as alert as possible, while others ask to be sedated. Strong pain medications (narcotic analgesics) may have a sedating effect, especially when first started. While it may be possible to be completely alert and relatively pain free, this is not always possible in all cases. Different medications may be given for symptom relief, and often, different methods of giving the medications may be used as the patient's condition changes. 1

Hospice services are to be tailored to meet your needs, within the confines of the rules governing hospice care. The benefits of hospice include the staff, medications and equipment needed to meet the needs you have in treating the terminal illness, and the hospice you use must make its services available to you on a 24 hour basis.2 A hospice-trained RN serves as your case manager; the overall plan of care is coordinated by an Interdisciplinary Team who take a wholistic approach to the services to be provided. The Interdisciplinary Team is comprised of your Attending Physician, the Medical Director of the hospice, the registered nurse, a social worker, chaplain, and other health care professionals. In addition to visits by these hospice staff, LPN's and home health aides may visit as needed to assist you at home. If any of you need or want counseling, you can have it...but if you don't want counseling, you have the right to decline that service. "Counseling" services may comprise many different types of services, including assistance with solving financial problems, understanding advanced directives about medical care to be given, and the issues involved, support in coping with grief and many other services.

Hospice care is available on a twenty-four hour basis. This means that if there is any emergency or question that arises, a Registered Nurse is on-call to answer questions, come to your home to assess the patient and contact the physician for orders for needed medications, if necessary. In addition, if symptoms do become uncontrolled in a crisis situation, nurses will be sent out to stay with the patient and family, in your own home, in order to get symptoms under control.

The Attending Physician (your doctor) must approve or "write the orders" for all services, support, and equipment you may need. For this reason, it is extremely important that your physician be knowledgeable about caring for the terminally ill and that he or she agrees with the standards of care for hospice. This means that the physician subscribes to the accepted standard methods for controlling symptoms which may arise in the course of a terminal illness. Not all physicians are aware of the standards of care, and not all physicians subscribe to the standards in the hospice industry! By choosing to use hospice services, you are much more likely to receive care that is the most up-to-date and effective in controlling symptoms and supporting you through these difficult times.

If your symptoms are well-controlled, there is no problem. However, if pain increases and is not controlled, you need to communicate clearly with your physician and RN case manager to make sure the patient is kept as comfortable as is possible. For example, there are many different medications used and different methods of treating pain of varying types. By changing dosages of medications for pain, by changing the route of administering the medications (changing the route of taking a pain medication from a pill you take by mouth to taking medications by intravenous infusion, for example, or by giving the medication more frequently, a patient can be kept comfortable. (See "Standing Orders," "Pain Control," and "Narcotic Medications." The key is to communicate clearly to the hospice staff so that patient comfort can be maintained.

If at any time your attending physician does not give the orders needed for your care and comfort, then you may ask to speak with and consult with the Hospice's Medical Director. He or she must intervene, by law, to assure that your needs are properly met. So, by choosing hospice, you are helping to assure the very best patient services for the patient and family.

You always have the right to choose which doctor in your community serves as your Attending Physician. You may have been assigned a physician at the hospital after learning of the terminal illness. This does not mean that you have to stay with that doctor. Although it is not commonly necessary, you do have the right to change doctors if you choose to do so. If you are not receiving adequate pain control or the medications are too sedating and you don't want to be sedated, you need to discuss your wishes with the physician. Be assertive if you're not getting what you need! If you still experience difficulty, please call us at Hospice Patients Alliance.

1 Hospices which are licensed by the State and Certified by Medicare to participate in the Medicare program must meet uniform standards of care which are set forth in the Federal Code of Federal Regulations, Title 42 - Public Health, chapter IV - Health Care Financing Administration, Department of Health and Human Services, Part 418 - HOSPICE CARE. When referring to these laws, the following abbreviation is used: 42 CFR 418.00 - 418.405. These Standards of Care are the Laws that must be followed by all licensed and certified hospices and contain descriptions of the types of services which must be provided to you. We provide a copy of these Federal laws at Section 7a of this text. In addition, copies of these laws are available at any metropolitan public library and on the internet. See Section 7a of this text for internet address.

2 See 42 CFR 418.50.

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