Frequently Asked Questions
What is Hospice?
Hospice is a special kind of care designed to provide sensitivity
and support for people in the final phase of a terminal illness.
Hospice care seeks to enable patients to carry on an alert, pain-free
life and to manage other symptoms so that their last days may be
spent with dignity and quality at home or in a homelike setting.
Hospice care is provided wherever patients live (usually at home)
by an interdisciplinary team of professionals and volunteers addressing
the physical, social, spiritual, and emotional needs of the patient
and their loved ones during the last stages of illness, during the
dying process and during bereavement.
Hospice Cares Compassionately for Terminally Ill People by:
- Addressing the patient's physical, psychosocial and spiritual
needs.
- Helping family members during and after the dying process.
- Providing comprehensive palliative care when there is no cure,
with an emphasis on pain and symptom control.
- Enabling a person to live the last weeks and months of life
as fully and comfortably as possible, with dignity, at home or
in a home-like setting. Today, ninety-five percent of hospice
days of care are provided at the patient's residence.
- Helping others accept death as a natural part of life, seeking
neither to hasten nor prolong the dying process.
- The Hospice Care Team--Hospice care is provided on an as-needed
basis - 24 hours a day, 7 days a week, by an interdisciplinary
team consisting of:
- Physicians
- Nurses
- Home Health Aides
- Social Workers
- Spiritual Care Counselors
- Bereavement/Grief Counselors
- Specially Trained Volunteers
- Other end-of-life care professionals, as needed
- Services Provided by Hospice--Among its major responsibilities,
the interdisciplinary hospice team:
- Manages the patient's pain and symptoms
- Assists the patient with the emotional and psychosocial
aspects of dying
- Provides needed drugs, medical supplies, and equipment
- Coaches the family on how to care for the patient
- Offers spiritual support
- Delivers special services like speech and physical therapy
when needed
- Makes short-term inpatient care available when pain or
symptoms become too difficult to manage at home, or the caregiver
needs respite time
- Provides bereavement care and counseling to surviving family
and friends.
How is Hospice Different?
- Hospice offers palliative, rather than curative treatment.
Under the direction of a physician, hospice uses sophisticated
methods of pain and symptom control that enable the patient to
live as fully and comfortably as possible.
- Hospice treats the person, not the disease. The interdisciplinary
hospice team is made up of professionals who address the medical,
emotional, psychological, and spiritual needs of the patient and
loved ones.
- Hospice emphasizes quality, rather than length of life. Hospice
neither hastens nor postpones death. It affirms life and regards
dying as a normal process.
- Hospice considers the entire family, not just the patient, the
unit of care. Patients and their loved ones are included in the
decision-making process, and bereavement counseling is provided
to the family after the death of their loved one.
- Hospice offers help and support to the patient and family on
a 24-hour-a-day, seven-days-a-week basis. For hospice patients
and their loved ones, help is just a phone call away.
How do I choose a Hospice?
The following are questions to consider when choosing a hospice:
CAN I RECEIVE HOSPICE CARE IN MY HOME? Hospice
care takes place in the home. For some, “home” may
mean a house or an apartment. For others, it may be some form
of extended care facility, such as a nursing home or assisted
living facility. In addition, there are hospice residences exclusively
for hospice patients.
IF I STAY IN MY HOME, WHO WILL CARE FOR ME? The
majority of hospice patients live in their own home with the help
of a family member or friend who serves as the “primary
caregiver.” The caregiver, however, is not alone. Nurses,
social workers, doctors, volunteers, bereavement counselors and
others that comprise the hospice team help the caregiver provide
for the patient’s daily needs.
HOW CAN I FIND A HOSPICE NEAR ME? The Illinois
Hospice & Palliative Care Organization maintains a complete
and current listing of hospices within the state, as well as a
national listing in the event you are seeking help for a loved
one living elsewhere in the country. You may call IL-HPCO at 888-844-7706.
ARE ALL HOSPICES THE SAME? All full service
licensed hospices in Illinois provide the same basic core services.
Please make sure the provider is licensed as a FULL SERVICE. Hospices
may be freestanding, community based organizations, or they may
be affiliated with hospitals, home health agencies, health care
facilities, or health care systems. Both non-profit and for-profit
hospices are required to provide the same core services.
ARE THERE STANDARDS FOR HOSPICE PROVIDERS? Medicare
certifies the majority of hospices nationwide and Illinois licenses
providers in the state. In addition, most Illinois hospices currently
belong to the Illinois Hospice & Palliative Care Organization,
a non-profit organization, which promotes access to quality hospice
care in our communities. Many hospices also maintain membership
in the National Hospice & Palliative Care Organization, which
encourages sharing of ideas and solutions at the national level.
Many hospices have become accredited by the Joint Commission on
the Accreditation of Health Organizations or by Community Health
Accreditation Program, Inc. (CHAP), to further ensure quality
care.
WHO IS ELIGIBLE FOR HOSPICE? Hospice serves
patients with a terminal illness resulting in a life expectancy
of six months or less as determined by the patient’s physician.
Care is provided regardless of diagnosis, age, gender, nationality,
race, creed, sexual orientation, disability or ability to pay.
The patient makes the decision to choose hospice in partnership
with his or her physician and the hospice team, after a thorough
review of all the care options. In the state of Illinois, the
time frame has been extended to one year, although Medicare and
Medicaid is restricted to six months.
WHEN IS IT TIME FOR HOSPICE? When the goal of
treatment begins to shift from curing the illness to providing
comfort, it is time to consider hospice. This time may come well
before a physician indicates that the patient’s life expectancy
is six months or less (or one year in Illinois for non - Medicare
and non Medicaid patients). Sadly, many people wait until their
final days to involve hospice. By contacting the hospice early
in the diagnosis, the patient and family reserve time to understand
their options and choose the path that will have the most positive
impact on quality of life. The best time to learn about hospice
is before your need it.
WHY SHOULD WE CHOOSE HOSPICE? The decision to
choose hospice is a very personal one. It directly involves the
patient, family physician, and any loved ones that may serve as
caregivers. Here are a few things you should consider.
- Hospice’s expertise in palliative, or “comfort”
care, assures the patient of state-of-the-art pain control and
symptom management.
- Hospice enables patients to focus on living their remaining
days fully at home, among family and friends.
- Hospice’s emphasis on family involvement—understanding
that everyone’s definition of “family” is
unique—helps individuals to support each other during
this time of life.
WHAT MAKES HOSPICE CARE UNIQUE? Hospice care
centers on the patient and family. The goal of the professional
hospice care team is to empower you to make your own choice with
its support and assistance. The team serves as your advocate,
helping you to access the information and resources you need during
this very challenging time. In addition to providing the care
directly, hospice tem members serve as teachers, enabling the
family to care for their loved one at home. Hospice recognizes
that the family and caregivers need and extra measure of support
both during and after their experience of caring for a terminally
ill patient.
What kind of services should I expect
from a hospice?
Hospice services are available to patients with life-threatening
illnesses who can no longer benefit from curative treatment and
usually have life expectancies of twelve months or less, as determined
by a physician. Hospice services typically include:
- Physician services for the medical direction of the patient's
care, provided by either the patient's personal physician or a
physician affiliated with a hospice program
- Regular home care visits by registered nurses and licensed
practical nurses to monitor the patient's condition and to provide
appropriate care and maintain patient comfort
- Home health aide and homemaker services attending to the patient's
personal needs
- Chaplain services for the patient and/or loved ones, if desired
- Social work and counseling services
- Bereavement counseling to help patients and their loved ones
with grief and loss
- Medical equipment (i.e., hospital beds)
- Medical supplies (i.e., bandages and catheters)
- Drugs for symptom control and pain relief
- Volunteer support to assist loved ones
- Physical, speech, and occupational therapy
- Dietary counseling
How does hospice care begin?
Typically, hospice care starts as soon as the patient's doctor makes
a formal request or referral. Often a hospice program representative
will make an effort to visit the patient on the day the referral
is made, providing the visit meets the needs and schedule of the
patient and family/caregiver. Usually, care is ready to begin within
a day or two of a referral. However, in urgent situations, service
may begin sooner.
What kind of support is available to the
family/caregiver?
In many cases, family members are the patient's primary caregivers.
Additionally, hospice recognizes that loved ones have their own
special needs for support. As a relationship with the hospice begins,
hospice staff will want to know about the primary caregiver's priorities.
They will also want to know how best to support the patient and
family during this time. Support can take many different forms,
including visits with the patient and family members; telephone
calls about the patient's condition to loved ones, including family
members who live at a distance; and the provision of volunteers
to assist with patient and family needs.
Counseling services for the patient and loved ones are an important
part of hospice care. After the patient's death, bereavement support
is offered to families for at least one year. These services can
take a variety of forms, including telephone calls, visits, written
materials about grieving, and support groups. Individual counseling
may be offered by the hospice or the hospice may make a referral
to a community resource.
What role does the physician play?
It is important to find out what the role of the patient's primary
doctor will be once the patient begins receiving hospice care. Most
often, hospice patients can choose to have their personal doctor
involved in the medical care. Both the patient's physician and the
hospice medical director may work together to coordinate the patient's
medical care, especially when symptoms are difficult to manage.
Regardless, a physician's involvement is important to ensure quality
hospice care. The hospice medical director is also available to
answer questions you or the patient may have regarding hospice medical
care.
Will I be the only hospice patient that
the hospice staff serves?
Every hospice patient has access to a registered nurse, social worker,
home health aide, and chaplain. Typically, full-time registered
nurses provide care to about a dozen different families. Social
workers usually work with about twice that number. If needed, home
health aides, who provide personal care to the patient, will visit
most frequently. All visits, however, are subject to the patient
and family needs as described in the care plan, and the condition
of the patient during the course of the illness. The availability
and frequency of spiritual care is often dependent upon the family
request. Travel requirements and other factors may cause some variation
in how many patients the hospice staff can serve effectively.
What role does the hospice volunteer serve?
Hospice volunteers enhance quality of life and help reduce the burden
of caregiving. They 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, lending emotional support and companionship to
patients and family members, and helping out with light housekeeping.
Because hospice volunteers spend time in patients' and families'
homes, it is important for a hospice program to have some type of
application and interview process. In addition, hospice programs
should have an organized training program for their patient care
volunteers. Areas covered by these training programs often include
confidentiality, listening skills, signs and symptoms of approaching
death, working with families, loss and grief, and bereavement support.
How does the hospice work to keep the
patient comfortable?
Many patients experience pain and other distressing symptoms as
illnesses progress. Hospice staffs receive special training to effectively
anticipate, assess, treat, and prevent all types of physical symptoms
that cause discomfort and distress. Because symptom management,
especially pain, is such an important component of hospice care,
many hospice programs have developed ways to measure how well they
do in this area through surveys and studies. Hospice staffs work
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. That plan is evaluated frequently to reflect
changes and new goals.
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.
Can I be cared for by hospice if I reside
in a nursing home or other type of long- term care facility?
Hospice services can be provided to a terminally ill person whose
place of residence is a nursing home. This means the patient receives
specialized visits from hospice nurses, home health aides, chaplains,
social workers, and volunteers, in addition to other care and services
provided by the nursing home. The hospice and the nursing home should
have a written agreement in place in order for the hospice to serve
residents.
What happens if I cannot stay at home
due to my increasing care need and require an alternative place
to stay during my final phase of life?
A small, but 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 reside in a private residence. These patients
may require an alternative place to live during this final phase
of their life when they need extra care. It is best to find out
in advance whether insurance covers this type of care and how the
hospice arranges for payment.
How do I ensure that quality hospice
care is provided?
Many hospices use tools to evaluate how well they are doing in relation
to quality hospice standards. In addition, most programs conduct
family satisfaction surveys to get feedback on the performance of
their programs. To assist hospice programs in these efforts, the
National Hospice and Palliative Care Organization has developed
recommended standards, entitled Standards of Practice for Hospice
Programs as one means of self- and field-evaluation.
Do state and federal reviewers inspect
and evaluate hospices?
There are federal, state, and professional organizations that evaluate
hospice programs to protect consumers. These organizations survey
hospices to see whether they are providing care that meets defined
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 the hospice. As
you research different hospice programs, ask hospice representatives
to share the survey report with you and to answer any questions
you may have about this complex document.
How do I pay for hospice care?
Medicare, private health insurance, and Medicaid (in 45 states)
cover hospice care for patients who meet eligibility criteria. As
with any healthcare program, there may be co-pays and deductibles
that families pay to receive care. Many hospices also rely on community
support for donations. While each hospice has its own policies concerning
payment for care, it is a tradition of hospice care to offer services
based upon need, rather than the ability to pay.
When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions
about what to expect. 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 becomes apparent. By having these discussions
in advance, patients aren't forced into uncomfortable situations.
Instead, they can make an educated decision that includes the advice
and input of loved ones. |
