Frequently Asked Questions About Hospice Care

Following Q/A are for the United States
(Please refer to your country for answers to these questions)

 

What is Hospice Care?

Hospice and Palliative care is considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury. It involves a team-oriented approach to specialized medical care, pain management, and emotional and spiritual support for patient and family members.
The focus of hospice relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so.

Hospice focuses on caring for, not curing, a person’s end-stage disease which has been determined to be “incurable.” In most cases this care takes place in the patient’s home. Hospice care also is provided in freestanding hospice facilities, hospitals, nursing homes and other long-term care facilities.

Hospice services are available to patients of any age, religion, race, or illness. In the United States, hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations. To find out how hospice is paid for in your country, please contact a local hospice near you (where available). See more details below.

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Who Makes Up the Hospice Team?

Hospice care is a family-centered approach that includes a team of doctors, nurses, home health aides, social workers, chaplains, counselors, and trained volunteers. This team works together to care for the needs of the dying patient. This care focuses on the physical, emotional, social, and spiritual needs of the patient, as well as the emotional and spiritual needs of the family members. The goal of hospice care is to help keep the patient as pain-free as possible, with loved ones nearby until death. The hospice team develops an individualized care plan that meets each person's specific needs for pain management and symptom control. Other members of the team may include speech therapists, physical therapists, and occupational therapists, when needed. Often, the patient’s personal physician may also be included. However, a patient can choose to have their personal doctor take charge of the medical care or he or she may choose to have the hospice medical director take charge of the medical care. Another option is to have both the physician and the hospice medical director work together to coordinate the person's medical care, especially when symptoms are difficult to manage. Regardless of who the patient chooses, the hospice medical director is available to answer questions the patient or family may have regarding hospice care.

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Who is the Primary Caregiver?

Often, family members or other loved ones are the patient’s primary care givers. Hospice staff lend support to the caregivers.

What Can I Expect From the Hospice Team?

Among its major responsibilities, the interdisciplinary hospice team:

  • Manages the person’s pain and symptoms
  • Provides emotional and spiritual support
  • Provides needed medications, medical supplies, and equipment
  • Teaches loved ones how to care for the patient
  • Delivers special services like speech and physical therapy, when needed
  • Arranges for short-term inpatient care when pain or symptoms become too difficult to manage at home, or the caregiver needs respite (rest) time
  • Provides grief support to surviving loved ones and friends

“Support” for the caregivers throughout the patient’s care can include conversations with the person and family members, teaching caregiving skills, prayer, telephone calls to loved ones, including family members who live at a distance and companionship and help from volunteers.

Counseling or grief support for the patient and loved ones are an important part of hospice care. After the person's death, bereavement support is offered to families for at least one year (usually 13 months after the death of the loved one). These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling are sometimes offered by the hospice or the hospice may make a referral to a community resource.

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How is hospice different from other medical care?

Hospice recognizes that a serious illness affects the entire family as well as the person who is ill. The family, not just the patient, is the "unit of care" for hospice professionals. Sometimes other family members actually need more attention than the patient.

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What services does hospice provide?

Hospice includes the services of an interdisciplinary team of health care professionals:

  • Physicians (the patient’s own physician and the hospice physicians, who are specialist in controlling pain and other symptoms of serious illness) prescribe medications and other methods of pain and symptom control.

  • Nurses are experts at maintaining patient comfort. They assess the patient frequently and help family members provide the necessary support.

  • Certified nurse assistants and home health aides provide personal care and help the patient and family with activities of daily living (ADL’s). They also provide companionship and valuable emotional support.

  • Social workers coordinate community resources and help the patient and family with non-medical concerns. They can help family members mend damaged relationships, plan for the future and ease other emotional difficulties.

  • Chaplains and spiritual counselors help patients and families cope with spiritual questions and concerns at the end of life, either directly or by coordinating services with the patient’s and family’s spiritual advisors.

  • Bereavement coordinators help patients and families deal with grief. Grief support services continue for at least one year after the death of a hospice patient.

  • Volunteers provide companionship and emotional support and offer help in myriad ways.

Hospice also provides medications, medical equipment and supplies necessary to promote comfort at home or in other hospice settings.

Hospice staff are available by phone at all times, 24 hours a day, 365 days a year.

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When should patients and families consider hospice?

After a diagnosis of a life-limiting disease, patients and their families should consider their choices for care. A patient does not have to be bed-bound or critically ill to be admitted to hospice. A hospice nurse is called in to speak with you and your loved ones about your options for care.

Who is eligible for hospice care?

A physician must certify that a hospice patient has an illness and an estimated life expectancy of six months or less if the illness runs its usual course. The patient must agree to hospice care.

Generally most hospice providers accept everyone who meets those criteria, regardless of the patient’s financial situation or insurance coverage. The patient does not have to have family caregivers in the home in order to receive hospice services.

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Doesn’t accepting hospice care mean I am “throwing in the towel or simply “giving up”?

Hospice involves acknowledging that most diseases in their advanced form cannot be cured. It does not mean giving up hope. The focus of hope shifts towards helping the patient achieve as much physical comfort given his or her disease as well as a feeling of peace of mind.

What are the different levels of hospice care?

Most hospice patients live at home. Some may live in a nursing home. Routine home hospice care covers the services, of the interdisciplinary hospice team, medications and equipment. Other categories of care are available when needed.

Levels of Hospice Care:

Routine: Standard level of care given in the home, long term care facility or assisted living facility. Care includes visits from the hospice nurse, chaplain, social worker and home health aides as well as 24-hour on call nursing support.

Inpatient Care: Sometimes pain or symptoms cannot be controlled at home, and the patient is taken to a hospital or other inpatient care facility in order to get their pain and symptoms under control. After the symptoms are under control, the patient then returns home. Insurance usually covers the cost of inpatient room and board.

Respite Care: Many patients have their own caregivers, often family members. When caregivers need a rest from their care giving responsibilities, patients can stay in a nursing home or hospice inpatient facility for up to five days. Medicare covers the cost of room and board, as do many other insurance plans.

Continuous Care: Sometimes a patient has a medical crisis that needs close medical attention. When this happens, the hospice can arrange for inpatient care, or their staff can provide round-the-clock care in the home. When the crisis is over, the patient returns to routine home care.

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What if I choose hospice and then live more than six months?

Hospice care does not automatically end after six months. Medicare and most other insurance companies with a hospice benefit will continue to pay for hospice care as long as a physician certifies that the patient continues to have a limited life expectancy.

What if my condition improves?

Occasionally, the quality of care provided by hospice leads to improved health, and life expectancy exceeds six months. When this happens, the hospice staff will transfer care to a non-hospice care provider. Later, when patients become eligible for hospice services again, they can re-elect the hospice benefit.

How does hospice manage pain and other symptoms?

Hospice physicians and nurses are experts at pain and symptom management. They are continually developing new ways of keeping patients comfortable and as alert and independent as possible. They know which medications to use alone and in combination with other medicines in order to provide the best results for patients. The goal is to provide “quality of life for the hospice patient” in the limited amount of time he or she has left.

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Will I feel “doped up” on pain medication?

When morphine and other pain medicines are administered properly for medical reasons, patients find much-needed relief without getting "high" or craving drugs. The result is that hospice patients remain more alert and active because they are not exhausted by uncontrolled symptoms. If a patient’s pain requires an opioid for pain relief, then within the first few days of first receiving this medication, especially when the patient has never taken these medicines previously, he or she may appear more drowsy and sleep more. In approximately a week, the patient will develop a tolerance to this common side effect and will soon become more alert, sleeping less hours during the day so he or she can spend more quality time with family and friends. The hospice nurse is expert at watching for side effects to medications and will know what to do if this and other side effects do not resolve quickly.

What kind of emotional and spiritual support does the hospice staff provide?

Hospice recognizes that people are more than a group of symptoms. People nearing the end of their lives often face emotional and spiritual distress. They may feel saddened as their physical abilities begin to decrease. They are afraid of being a burden to their families. They often are concerned about how their loved ones will manage after they are gone. Spiritual and emotional pain can appear in many forms. Often, they feel deep regret about things they have done or said – or they think of things that are left undone and unsaid. Hospice professionals and volunteers are trained to be good listeners and to help patients and families work through some of these concerns. In this way, one of the staff’s goals for the patient is to help him find peace and emotional comfort in his final days. The goal for the family and other loved ones is to help them reach sound conclusions and closure with their loved one who will soon pass on.

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How do I Find a Local Hospice?

Click here to locate a local hospice in the United States or Canada.

Click here for a worldwide database to locate a local hospice.

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Below is a list of things to consider when thinking about contacting a local hospice:

1. Have an advance directive in place that authorizes a person of your choosing to make decisions if you become unable to do so for yourself

2. Get the information you need about services provided by hospice

3. Make sure you understand how hospice services are paid for

4. Discuss your thoughts, concerns and choices with your family and friends

5. Talk to your physician, family, and close friends about your choices.

6. Become familiar with the hospices in your area.

This following information about Medicare coverage pertains to the United States only. If you are located outside of the United States, please contact a local hospice, where available, or a hospital, to find more information that pertains to your situation.

Who Pays for Hospice Care?

Within the United States, hospice is paid for through the Medicare Hospice Benefit (via federal government), Medicaid Hospice Benefit (via state government), and most private insurers. If a person does not have coverage through Medicare, Medicaid or a private insurance company, hospice will work with the person and their family to ensure needed services can be provided.

What is the Medicare Hospice Benefit?

The Medicare Hospice Benefit, initiated in 1983, is covered under Medicare Part A (hospital insurance). Medicare beneficiaries who choose hospice care receive a full scope of medical and support services for their life-limiting illness. Hospice care also supports the family and loved ones of the person through a variety of services as explained above.

More than 90% of hospices in the United States are certified by Medicare. Eighty percent of people who use hospice care are over the age of 65, and are thus entitled to the services offered by the Medicare Hospice Benefit. This benefit covers virtually all aspects of hospice care with little out-of-pocket expense to the person or family. In addition, most private health plans and Medicaid in 47 States and the District of Columbia cover hospice services.

Sometimes a person’s health improves or their illness goes into remission. If that happens, your doctor may feel that a patient no longer needs hospice care. In addition, a patient always has the right to stop hospice care, for any reason. If hospice care is stopped, a patient will receive the type of Medicare coverage that he or she had before electing hospice. If a patient is still eligible, he or she can again return to hospice care at any time.

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Who is Eligible for Medicare Hospice Benefits?

In the U.S. A person is eligible for Medicare hospice benefits when he or she meets all of the following conditions:

  • He or she is eligible for Medicare Part A (Hospital Insurance)
    and
  • His or her doctor and the hospice medical director certify that he or she has a life-limiting illness and if the disease runs its normal course, death may be expected in six months or less*
    and
  • The patient signs a statement choosing hospice care instead of routine Medicare covered benefits for their illness
    and
  • The patient receives care from a Medicare-approved hospice program.

*Medicare will still pay for covered benefits for any health needs that are NOT related to your life-limiting illness.

What Does Medicare Cover?

Medicare covers these hospice services:

  • Doctor services
  • Nursing care
  • Medical equipment (like wheelchairs or walkers)
  • Medical supplies (like bandages and catheters)
  • Drugs for symptom control and pain relief
  • Short-term care in the hospital or in-patient hospice facility (when available), including respite and inpatient for pain and symptom management *
  • Home health aide and homemaker services
  • Physical and occupational therapy
  • Speech therapy
  • Social work services
  • Dietary counseling
  • Grief support to help the patient and family

*The patient will only have to pay part of the cost for outpatient drugs and inpatient respite care.

The Medicare Hospice Benefit Does Not Cover the Following:

1. Treatment intended to cure the patient’s disease.

The patient will receive comfort care to help manage symptoms related to your illness. Comfort care includes medications for symptom control and pain relief, physical care, counseling, and other hospice services.

2. Medications not directly related to your hospice diagnosis are not covered under the Medicare Hospice Benefit.

Hospice team members will consult with the hospice physician and will inform the patient and family members which medications are covered and which ones are not covered under the Medicare Hospice Benefit. The Hospice uses medicine, equipment, and supplies to make the patient as comfortable as possible. Under the hospice benefit, Medicare will not pay for treatment where the goal is to cure the end-stage disease. The patient should speak with the physician if he or she is thinking about potential treatment to cure the illness.

3. Care from another provider that is the same care that the patient is getting from the hospice.

4. Nursing Home Room and Board

Room and board are NOT covered by Medicare. The patient may receive hospice services wherever he or she lives, even in a nursing home. However, the Medicare Hospice Benefit does not pay for nursing home room and board.

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