Care Options for Serious Illness: Hospice

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Hospice is a comprehensive service that focuses on controlling pain and symptoms and improving the quality of life for people with a life-threatening illness who have a short life expectancies (six months or less). Hospice is a form of palliative care for people who are not being helped by active treatment or for whom the burdens of treatment outweigh the benefits.

People choose hospice when they want to spend their remaining time without aggressive treatments and with care that focuses on comfort and quality of life. Entering hospice requires forgoing treatment intended to cure.

Hospice is a team approach that utilizes the skills of different medical and nonmedical specialists to create an environment of comfort and emotional and spiritual support for both the patient and the family.

Hospice services may include, in addition to doctors and nurses, physical and occupational therapists, social workers, volunteers, and clergy. Other services are

  • Medications to relieve nausea, pain, shortness of breath, agitation, and other symptoms

  • Medical supplies such as a hospital bed or a wheelchair

  • Support for the family, including counseling and teaching how to do certain healthcare tasks

  • A short hospital stay if the person's symptoms cannot be managed at home

  • Short-term respite care — time off for the family

  • Volunteers to provide companionship

  • Bereavement counseling for the family for a year after the person's death.

Sometimes doctors recommend hospice, but in other cases a family member has to begin the discussion. If you ask about hospice and are criticized by a doctor or nurse, ask why they are opposed to the idea. If you are not satisfied, ask for a second opinion.

Hospice is not right for everyone. Some people want to pursue aggressive treatments to the very end. Home hospice may also require a considerable amount of caregiving by the family. Having new people involved in care may seem overwhelming at a time of great emotional stress.

But hospice offers an opportunity for care that sees the whole person and the family as the unit of care and works with them to achieve the best quality of life possible.

Hospice at home or in a facility

In the United States, most hospice services are provided at home, but they can also be provided in nursing homes and assisted-living facilities, which may contract with a local hospice to provide the care. There are, in addition, inpatient hospices in some hospitals and free-standing hospices.

Although a team of professionals, as well as volunteers and aides, provides home hospice services, much of the care is provided by family members. Only in the last few days of life is there likely to be constant care by a member of the hospice team.

However, one of the benefits of hospice is that you have a 24-hour number to call if an unexpected problem occurs. A hospice nurse can offer advice and make a home visit if necessary, which can reduce unnecessary and stressful visits to the emergency department (ED).

Hospice benefits under Medicare and Medicaid

Hospice is a benefit under Medicare Part A and is included in Medicare Advantage plans. All other Medicare benefits under Parts A and B continue, including the attending physician's fees. You can continue to get services for conditions that are not related to the terminal illness.

Although it is not a required service under Medicaid, most states and the District of Columbia offer hospice services. The services may vary, so check your state's Medicaid agency. Most private health insurance plans follow Medicare guidelines on hospice.

To be eligible for the Medicare hospice benefit, for example, a doctor has to certify that a person has a six-month or less life expectancy. Some diseases, such as cancer, follow a more or less predictable course. But others, like Alzheimer's disease, do not, and it is much harder to say how much longer a person with Alzheimer's is likely to live.

As a result, hospices have been criticized both for taking patients with only a few days to live, when they cannot get the full benefit of the services, and taking patients with an unpredictable disease course, which results in higher costs.

Tips for choosing the right hospice

Choosing a hospice, like choosing a home care agency, requires some research on your part. You certainly want to find out if the hospice is certified by Medicare, which means that it meets federal and state guidelines. You also want to ask about 24-hour phone availability, how the hospice manages medical emergencies, and what kinds of medical equipment will be provided.

Although accepting hospice means giving up treatments intended to cure, many medical interventions such as chemotherapy to relieve symptoms and anti-nausea medications are important adjuncts to hospice care. What is the hospice policy on these kinds of treatments?

You can find out about hospices in your area by asking the doctor, hospital, or state health department or by going to www.hospicedirectory.org and other websites. The hospices listed in this directory indicate whether they are Medicare- and Medicaid-certified.

You can find a list of state hospice associations at www.hospicedirectory.org/cm/about/state_hospice. Make sure you check several sources to get a complete list, as some websites only list hospices with which they are affiliated.

Ending hospice care

A person in hospice care has the right to discontinue the services at any time for any reason. Perhaps your parent is getting better because of the extra attention (some studies show that people on hospice live longer than those who don't get this care). You can always cease hospice care for a while and start again when necessary.

But be aware that the hospice can also discharge the patient. This happens rarely, but usually the reason is that the person no longer meets hospice criteria or wants to pursue treatments intended to cure. The hospice may also say that the home is not safe for its workers, or that the family refuses to cooperate with hospice rules. Hospice programs cannot discharge persons because their care is inconvenient or too expensive.

Some hospices have been forced to close because Medicare auditors determined that they were keeping people for extended periods and their claims were denied. So hospices may be wary of taking persons who have unpredictable courses of illness.

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