Family

Caregiver
Family Caregiver’s Guide to
Guide
Hospice and Palliative Care
If you have been a family caregiver for a while, you probably have
been through a lot of transitions. Maybe your family member was
in and out of the hospital several times. Perhaps he or she spent a
few weeks in a rehabilitation unit or received home care services.
Or perhaps he or she is now a resident in a long-term care facility.
In each of these transitions, you had to meet new health care
professionals, learn more about your family member’s health, and
adjust to new caregiving tasks and routines.


Even though you have
Now you are coming to a new transition. Maybe your family
member’s health is getting worse. Perhaps the treatments
intended to prolong his or her life are not working or causing a lot
of pain and suffering. You may have a lot of questions and
been through transitions concerns about what to do. You may also be dealing with many
before, this one may be feelings as your family member faces a serious and life-
harder. threatening illness, or is dying.
When you are thinking about whether your family member’s
current care is appropriate for his or her condition, here are some
questions to ask:
 What is the prognosis--the expected course--of my family
member’s illness?
 What are the goals for care? For instance, is the goal to cure
the disease or to provide comfort and improve the quality of
my family member’s life?
This guide is written as a way to help you through this transition.
The first section compares hospice and palliative (PAL-ee-a-tive)
care. The second section looks just at hospice.

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 Hospice and Palliative Care

Hospice and palliative care: A comparison

Palliative Care Hospice Care

Goals To assess and treat the patient’s pain and To keep the patient comfortable, as free as
other physical, psychosocial, and spiritual possible from pain and symptoms, and allow
problems. him or her to maintain a good quality of life
for the time remaining. Hospice accepts
death as an inevitable outcome for a patient
with a terminal (end-stage) illness. In hospice,
both the patient and family are the focus of
care.

Patients Palliative care accepts patients who have Hospice only accepts patients who are near
complicated or advanced medical the “end of life” (meaning they have a
disease. There is no time limit in terms of terminal illness) and are likely to die within 6
life expectancy --patients may or may not months if the disease runs its normal course.
be dying. Patients can get treatments
intended to cure. They also can
participate in research studies.

Where Palliative care is usually given in hospitals. Most hospice care happens at home,
care Sometimes it takes place at nursing although it can also be given in other settings
occurs homes or assisted living facilities. as well, such as the hospital, nursing home, or
Palliative care at home is possible but not assisted living facility.
readily available.

Who Palliative care is a medical subspecialty. Hospice care is a team approach, led by
provides This means that doctors and nurses who doctors and nurses with special training.
the care practice palliative care have extra training Specialists may provide spiritual,
about ways to manage symptoms. They psychosocial and other care. Hospice care
work with a team of other professionals. may require a lot of time and effort from the
family.

Paying for There is no special insurance benefit for Hospice is a Medicare (federally funded)
services palliative care. The patient’s health program. Many state Medicaid plans and
insurance generally covers palliative care private health insurance plans pay for
services. hospice.
A patient who chooses the Medicare hospice
benefit agrees to give up treatments meant
to cure disease. This is in return for other
types of support and supplies.

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Hospice care
This part of the guide gives answers to many questions family
caregivers ask about hospice.

When should we start thinking about hospice care?

 When there are no more treatment options to cure your

family member’s disease, hospice becomes an option. With
hospice, the focus is on comfort and quality of life.
 Hospice may be the best option when you and your family
member decide that treatment meant to cure is not worth its
side effects, pain, and suffering.

In hospice care, the
 It helps to make the choice for hospice sooner rather than
later. Many people delay since it marks a turning point in your
patient and family are family member’s care. This means that many patients receive
treated as the unit of care. hospice care for only a short period of time. Some patients
and caregivers fear that choosing hospice means that nothing
more can be done. But this is not the case. In fact, hospice
patients often receive a lot of services to help improve their
quality of life.

Who decides about hospice care?

As the family caregiver, you and your family member are the ones
to decide about seeking hospice care. Many people find that it
helps to make this choice only after talking with other family
members, doctors, and caregivers. You must freely make the
choice -- meaning that no one can force you to accept hospice
care.
Your doctor may be the first one to suggest hospice care. Or you
may be the first to mention it. Please do not be afraid to talk
about hospice. Some doctors do not like talking about hospice as
they feel it is a sign of failure. Other doctors do not mention
hospice because they wrongly believe that they cannot continue
to be involved in the patient’s care. Once in a while, a doctor may
criticize family caregivers for asking about hospice. If this
happens, ask why and then get a second opinion from
another doctor.

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 Hospice and Palliative Care

Sometimes a doctor and a hospice program do not agree on who

should get hospice care. This may occur when a patient does not
have a clearly defined illness or “terminal condition.” If this
happens, ask the doctor to explain why he or she believes your
family member is eligible and why the hospice did not accept the
patient. You can also try another hospice.
Once the decision is made for hospice care, a doctor must sign an
order requesting it.

What if my family member cannot help

make the choice?
 If your family member is too ill, unconscious, confused, or
unable to speak, then you as the family caregiver may be the
one to decide about hospice care. It helps if you have
discussed this ahead of time with your family member. If not,
you need to decide based on what your family member has
said in the past or what you know about what he or she would


want.
 Sometimes family members strongly disagree with each
Even if you are the one other. If so, ask the doctor or a social worker to meet with your
most responsible for your family so you all can learn more about your family member’s
family member’s care, it illness and chance for recovery.
helps to talk with your An advance directive is a very important legal document that can
whole family about help. It is a way for patients to appoint someone to speak on their
whether to start hospice. behalf if they no longer can speak for themselves. This person is
known as a substitute decision maker or health care proxy. To
learn more about advance directives, go to
http://nextstepincare.org/left_top_menu/Caregiver_Home/Adva
nce_Directives.

What services are included in hospice

care?
Services vary but include:
 Care from a team of trained doctors, nurses, social worker,
chaplain, home care aides and other health care providers.

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 Hospice and Palliative Care

  The team may also include physical and occupational

therapists.
 Access to the hospice team by phone 24 hours a day, 7 days a
Hospice care does not week.
include treatments and
medications that are  Medication to relieve nausea, pain, shortness of breath,
aimed to cure. Some agitation, and other symptoms.
programs offer more
expensive comfort  Medical supplies and equipment, such as a hospital bed or
measures, equipment, or wheelchair.
support and care because
they have charity  Family support. This includes emotional support as well as
donations or special teaching how to do certain health care tasks such as giving
agreements with certain injections and changing dressings.
health insurance plans.
 A short stay in the hospital if the patient’s symptoms are too
difficult to manage at home.
 Short-term respite care--time off for family caregivers.
 Volunteers to provide companionship for the patient.
 Bereavement counseling to family caregivers for a year after
the patient’s death.

Who pays for hospice care?

If the patient has Medicare Part A coverage, the Medicare
Hospice Benefit pays for most direct patient services listed in
this guide including professional fees, medical equipment, and
medication. Hospice patients can keep getting Medicare
benefits to treat health problems other than the terminal
illness.

Most private health insurance plans pay for hospice and follow
Medicare guidelines.

Although not required, most state Medicaid programs pay for

hospice services. You should check this to make sure. You may
need to pay a small co-payment (co-pay) for some hospice
services, such as some drugs and respite services.

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 Hospice and Palliative Care

How should I choose a hospice?

Hospices are not all the same. Some are large and some are small.
Some are run by nonprofit agencies, others by corporations. You
may have many hospices to choose from or just one. You can find
out about hospices in your area by asking a doctor, hospital, state
hospice organization, or health department, or by going to
www.hospicedirectory.org and other websites. Make sure you
check several sources to get a complete list.
Here are some questions you may want to ask before choosing a
hospice:
Is the hospice certified by Medicare? This means that the
hospice meets state and federal guidelines.

Can I speak with hospice staff 24 hours a day, 7 days a week? Is

there a specific nurse or case manager I need to contact?

How does the hospice manage medical emergencies, such as

difficulty breathing or severe pain?

How does the hospice manage complaints?

How much and what kind of equipment will the hospice
provide?

What are the hospice policies about:

Giving pain medication, antibiotics, chemotherapy to
relieve symptoms, radiation therapy, anti-nausea
medication, and blood transfusions?

Using mechanical ventilator support (breathing tubes)?


The first few days of
Taking out implanted heart devices (pacemakers)?

hospice care can be very

busy and perhaps
What happens once hospice services
confusing. It takes a begin?
while to get to know the
new team, understand
A hospice staff member will set up a meeting with you after
who will be coming and
your family member has been referred for hospice. This
when, and what your role
meeting is a time for you and your family member to ask
is as a family caregiver.
questions and confirm if hospice is the right choice. If so, you
will be asked to sign consent forms. The hospice team then
begins working with your family member within 1 to 2 days.

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 Hospice and Palliative Care

If your family member had services from a home care agency,
you may miss some staff with whom you had a good
relationship. This is a common reaction to working with a new
team.

You may have to make some changes to the home such as


Calling 911 is often not a
moving furniture to make room for new hospice equipment.

You will be assigned a hospice nurse. He or she will be your

good idea because main contact and will visit regularly. The hospice team may
ambulance rides or also include therapists and a part-time aide or homemaker.
emergency department You can keep working with other aides or helpers you pay for
visits can be on your own. The hospice team will review your family
uncomfortable for your member’s care on a regular basis. This is a time to see if there
family member and are have been any changes in your family member’s medical
not always helpful. condition and prognosis. Based on this review, hospice care
may go on for more than 6 months if your family member still
meets Medicare’s hospice guidelines.

Hospice staff will talk with you about what to do in a medical

emergency. Most often, this means calling the 24-hour hospice
number rather than 911. This can be a difficult change if you
are used to calling for an ambulance to take your family


Let the hospice team
member to the hospital.

When you call the 24-hour hospice number, the staff can help
know if your family has you decide what to do in a medical emergency. Maybe your
any special religious, family member is now at the end of his or her life and would be
cultural, or other practices more comfortable at home. Or perhaps the hospital is the best
that may affect patient place to manage his or her symptoms. If your family member
care.. does need to go to the hospital, the hospice nurse can assist
with the admission and may be able to help you avoid the
emergency room.

What if we want to stop hospice care?

Hospice care is voluntary. This means that you and your family
member can leave the hospice program for any reason, for
example, if he or she is getting better. Later on, you can again
start working with the same or another hospice program.

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 Hospice and Palliative Care


Every hospice has its own
What if hospice stops working with our
family member?
medical director who
oversees patient care.
On rare occasions, a hospice program will discharge (stop
Many patients can also
have their own primary providing services to) a patient. This can happen if the patient
care doctors involved in gets better and no longer meets the 6-month prognosis. A
hospice care. If so, both hospice program may also discharge a patient if the home
the doctor and medical environment is not safe or the family refuses to cooperate with
director need to work the hospice rules. Hospice programs cannot discharge patients
together. because their care is too expensive or inconvenient.

Patients and families can find it upsetting to be discharged from

hospice. After all, you have come to rely on the team of hospice
nurses, aides, and social workers. If your family member is
discharged, the hospice team may help set up other home health
services or move to a different level of care, such as a long-term
care facility (nursing home).


With some exceptions,
How will hospice affect me, the caregiver?

usually during the last

Hospice is different from other types of care. You may have more
few days of life, hospice
care does not provide help than you are used to. This can be both good and bad. It can
around-the-clock nursing be good in that others take over certain caregiving tasks and you
or personal care. This may have more time for yourself. But it may feel like a loss when
means that family others take on tasks you are used to doing. It helps to talk about
members or hired these changes with your hospice team.
caregivers provide most of
the care. Hospice teams recognize you as the primary caregiver for the
person who is ill. The hospice team will teach you and others how
to care for your family member at home.
You may have to learn new tasks and accept a plan of care that is
different from before. You will also be offered bereavement
services for a year after the death of your family member.
Hospice provides a level of care that is difficult to obtain in other
settings at a time when your family member needs special care.
But it also requires a lot from you and your family. Think about
your family member’s values, your own abilities, and what
hospice provides. If you choose hospice, you will be better
prepared for this important transition.

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