A specialized kind of care for those facing a life-limiting illness, their families and their caregivers that:
- addresses the physical needs of patients and their emotional, social and spiritual needs
- takes place in the patient’s home or in a home-like setting
- concentrates on making patients as free of pain and as comfortable as they want to be so they can make the most of the time that remains
- considers helping family members an essential part of its mission
- believes the quality of life to be as important as length of life
Do you need some help choosing a hospice? We have some information to help you.
Is hospice for those with cancer only?
No. Hospice patients are living with a wide range of diagnoses including heart disease, cancer, dementias, lung disease and others. However, regardless of a patient’s condition—or age—hospices open their doors and their hearts to all persons diagnosed with life-limiting illnesses and their families.
Hospice is NOT a place.
Hospice services can be provided to a person with limited life expectancy and his/her family, wherever they live. This means a patient living in a nursing facility or long-term care facility and his/her family can receive specialized visits/contacts from physicians, nurses, aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.
How does hospice care begin?
Typically, hospice care starts as soon as a formal request or a ‘referral’ is made. A hospice representative will visit the patient within 48 hours of referral, pending the physician’s approval, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Hospice care begins within a day or two of referral. However, in urgent situations, hospice services may begin sooner.
The patient or a family member may “self-refer” and request an evaluation for eligibility for receiving hospice services.
What specific assistance does hospice provide?
Hospice patients and their families are cared for by a team of doctors, nurses, social workers, counselors, aides, spiritual caregivers, therapists, and volunteers— working together in a team to address the patient’s and family’s identified needs. In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.
How does hospice “manage pain”?
Hospice nurses and physicians are experts in the latest medications and devices for pain and symptom relief. In addition, physical and occupational therapists assist patients to be as mobile and self-sufficient as possible, and they are often joined by specialists schooled in music therapy, art therapy, diet counseling, and other therapies.
Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses these, as well. Counselors, including spiritual caregivers, are available.
Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider will assess your needs, recommend any necessary equipment, and help make arrangements to obtain it. Often the need for equipment is minimal at first and increases as the patient’s needs change.
In general, hospice will assist in any way it can to make home care as convenient and safe as possible.
Is hospice care covered by insurance?
Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in 47 states, and by most private health insurance policies. To be sure of coverage, families should, of course, check with their employer or health insurance provider.
If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
The first thing hospice will do is assist families in finding out whether the patient is eligible for any coverage they may not be aware of. Barring this, most hospices will provide care for those who cannot pay, using money raised from the community or from memorial or foundation gifts.
If the patient is eligible for Medicare, will there be any additional expenses to be paid?
Medicare covers all services and supplies related to the life-limiting illness for the hospice patient. In some hospices, the patient may be required to pay a 5% or $5 “co-payment” on medication and a 5% co-payment for respite care. You should find out about any co-payment when choosing a hos-pice.
When should a decision about entering a hospice program be made—and who should make it?
At any time during a life-limiting illness, it is appropriate to discuss all of a patient’s care options, including hospice. By law the decision belongs to the patient. Because hospice care includes family members and other caregivers, they are also considered an important part of the decision-making process.
Sometimes, people have concerns about changing the focus of care from disease-modifying to focus on comfort care and quality of life. Hospice staff members are highly sensitive to these concerns and are always available to discuss them with the patient, family and physician.
What is Palliative Care?
If you are not familiar with the term “palliative” care, it is a medical specialty focused on managing the physical and emotional impact of serious illness.
Sometimes people think palliative and hospice care are synonymous. They are not. But some organizations provide both hospice and palliative care.
Hospice is a specific branch of palliative care for those with a terminal diagnosis. It is important to know you DO NOT have to forgo curative treatment or have a terminal diagnosis to receive palliative care.
Palliative care is treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life. No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the individual, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life.
The decision to intervene with active palliative care is based on an ability to meet stated goals rather than affect the underlying disease. An individual’s needs must continue to be assessed and all treatment options explored and evaluated in the context of the individual’s values and symptoms. The individual’s choices and decisions regarding care are paramount and must be followed.
Choosing a hospice
One of the best ways to choose a hospice is to ask questions. A local hospice provider should be more than willing to help you understand their services and how they might be appropriate for your specific situation.
The National Hospice and Palliative Care Organization has developed some questions to help identify factors that may be important to you and your family when selecting a hospice. Learn more.