When is the right time to ask about hospice?

Now is the best time to learn more about hospice and ask questions about what to expect from hospice services. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.

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How does hospice care begin?

Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.
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Will I be the only hospice patient that the hospice staff serves?

Every hospice patient has access to a hospice volunteer, registered nurse, social
worker, home health aide, and chaplain (also known as the interdisciplinary
team). For each patient and family, the interdisciplinary team writes a care plan
with the patient/family that is used to make sure the patient and family receive
the care they need from the team. Typically, full-time registered nurses provide
care to about a dozen different families. Social workers usually work with about
twice the number of patients/families as nurses. If needed, home health aides,
who provide personal care to the patient, will visit most frequently.
All visits, however, are based on the patient and family needs as described in the
care plan and the condition of the patient during the course of illness. The
frequency of volunteers and spiritual care is often dependent upon the family
request and the availability of these services. Travel requirements and other
factors may cause some variation in how many patients each hospice staff
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Is hospice available after hours?

Hospice care is available ‘on-call’ after the administrative office has closed,
seven days a week, 24 hours a day. Most hospices have nurses available to
respond to a call for help within minutes, if necessary. Some hospice programs
have chaplains and social workers on call as well.
How does the hospice work to keep the patient comfortable?
Many patients may have pain and other serious symptoms as illness
progresses. Hospice staff receives special training to care for all types of
physical and emotional symptoms that cause pain, discomfort and distress.
Because keeping the patient comfortable and pain-free is an important part of
hospice care, many hospice programs have developed ways to measure how
comfortable the patient is during the course of their stay in hospice. Hospice
staff works with the patient’s physician to make sure that medication, therapies,
and procedures are designed to achieve the goals outlined in the patient’s care
plan. The care plan is reviewed frequently to make sure any changes and new
goals are in the plan.
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What role does the hospice volunteer serve?

Hospice volunteers are generally available to provide different types of support to
patients and their loved ones including running errands, preparing light meals,
staying with a patient to give family members a break, and lending emotional
support and companionship to patients and family members.
Because hospice volunteers spend time in patients’ and families’ homes, each
hospice program generally has an application and interview process to assure
the person is right for this type of volunteer work. In addition, hospice programs
have an organized training program for their patient care volunteers. Areas
covered by these training programs often include understanding hospice,
confidentiality, working with families, listening skills, signs and symptoms of
approaching death, loss and grief and bereavement support.
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Can I be cared for by hospice if I reside in a nursing facility or other type of long-term care facility?

Hospice services can be provided to a terminally ill person wherever they live.
This means a patient living in a nursing facility or long-term care facility can
receive specialized visits from hospice nurses, home health 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.
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What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?

A growing number of hospice programs have their own hospice facilities or have
arrangements with freestanding hospice houses, hospitals or inpatient residential
centers to care for patients who cannot stay where they usually live. These
patients may require a different place to live during this phase of their life when
they need extra care. However, care in these settings is not covered under the
Medicare or Medicaid Hospice Benefit. It is best to find out, well before hospice


may be needed, if insurance or any other payer covers this type of care or if
patients/families will be responsible for payment.

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Do state and federal reviewers inspect and evaluate hospices?

Yes. There are state licensure requirements that must be met by hospice
programs in order for them to deliver care. In addition, hospices must comply
with federal regulations in order to be approved for reimbursement under
Medicare. Hospices must periodically undergo inspection to be sure they are
meeting regulatory standards in order to maintain their license to operate and the
certification that permits Medicare reimbursement. 
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How can I be sure that quality hospice care is provided?

Many hospices use tools to let them see how well they are doing in relation to
quality hospice standards. In addition, most programs use family satisfaction
surveys to get feedback on the performance of their programs. To help hospice
programs in making sure they give quality care and service, the National Hospice
and Palliative Care Organization has developed recommended standards entitled
‘Standards of Practice for Hospice Programs’ as one way of ensuring quality.
There are also voluntary accreditation organizations that evaluate hospice
programs to protect consumers. These organizations survey hospices to see
whether they are providing care that meets defined quality standards. These
reviews consider the customary practices of the hospice, such as policies and
procedures, medical records, personal records, evaluation studies, and in many
cases also include visits to patients and families currently under care of that
hospice program. A hospice program may volunteer to obtain accreditation from
one of these organizations. 
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