| |
General definitions
Much as a family might wish
to provide all the end-of-life care for an ailing loved one,
achieving that objective is not always possible. Care-giving
is hard work. The patient may need 24-hour-a-day attention,
and providing one hundred percent of the physical and emotional
care for an undetermined period of time may prove to be too
much for the family to handle. Fortunately, it’s not
an all-or-nothing proposition.
Certainly, no one can replace
the love provided by family members. But if you can get help
with some of the physical aspects of caring—things
others can easily do—then you will have more time and
energy to provide valuable emotional support to the patient.
Three levels of care can be provided by others:
Supportive care, which
includes assistance such as transportation to and from appointments,
meal preparation, shopping, housekeeping, and laundry services.
Personal care, which
includes help with dressing, grooming, bathing, feeding,
incontinence care, and transferring the patient from bed
to chair. It can also include taking and recording vital
signs (e.g., blood pressure or pulse) and giving medications.
Skilled care, which
includes procedures or evaluations that require the skills
of a licensed nurse. It involves tasks such as hooking up
an IV, giving a shot, or monitoring rapid changes in condition.
These types of care can be
provided in many different ways. Some services are offered
at home. Some require a move to a specific setting such as
an assisted living facility or a nursing home. No matter
where your loved one lives, if he or she has been diagnosed
with a terminal illness, hospice can offer tremendous support
during the patient’s remaining few months of life.
Because hospice is available in a variety of settings, we
recommend you learn about hospice services first in case
you need them. Then you can consider which location and type
of care is appropriate for your situation. (Return
to list)
Hospice
Hospice service emphasizes
comfort and quality of life. It is specifically designed
to relieve any physical, emotional, or spiritual pain experienced
by those with terminal illness. This holistic approach extends
to both the patient and the family. Some communities have
an inpatient hospice facility—a special building where
people near the end of life can live and receive 24-hour
care by trained staff. Most communities have more-modest
hospice services. Rather than move to a hospice facility,
for instance, patients receive several one- to two-hour home
visits. As a general rule, patients may receive hospice care
whether they are living at home, in an assisted living facility,
or in retirement apartments. In many states they can also
receive hospice if they live in a foster care home, a residential
care facility, or a skilled nursing facility. Hospice does
not provide day-in, day-out care, so most people who use
this service also have ongoing caregivers available.
Staffing: Hospice uses a team
approach to provide physical, emotional, financial, and spiritual
support to the terminally ill. The hospice team includes
nurses, social workers, and bath aides as well as chaplains
who assist with spiritual concerns in a nondenominational
context. Hospice personnel are trained to maintain comfort
on all levels (“comfort care”) and to safeguard
the patient’s right to a pain-free death.
Hospice services typically
include a visit from a nurse two to three times a week as
well as help from social workers who can connect the family
to social service programs. Most medical equipment and medications
associated with a terminal diagnosis, including pain medicines,
are provided as part of hospice care. Weekly visits from
a volunteer are also available and give family caregivers
a few hours of respite. Nurse’s aides may come every
other day to help bathe and shave the patient. In addition,
the counsel of a chaplain is available anytime upon request.
The financial side: If the
patient is relying upon Medicare to pay for hospice services,
two requirements must be met: A physician must certify that
to the best of his or her knowledge, the patient is not likely
to live longer than six months; and the patient, family,
and physician must agree to forego curative treatments (for
example, chemotherapy or radiation) and focus instead on
providing comfort care and enhancing quality of life for
the time the patient has left. Depending on the policy, those
with private insurance may be able to continue curative treatment
while also receiving hospice services.
If the patient has decided
to opt for comfort care and let nature take its course, hospice
can be extremely helpful for both the person who is ill and
for the family caregivers. Physicians often wait for the
family to request this service. Unfortunately, many families
do not seek hospice care until very late in the disease.
Once they begin to receive hospice support, they often realize
they had needed the help weeks and even months earlier. Hospice
programs recommend at least two months of care so the patient
can receive the optimum benefit of the services provided.
If you are beginning to think that hospice might be a useful
option for your family, we suggest you start the conversation
with your doctor. Sooner is better than later. (Return to list)
Settings for care
Care in the home
Most patients prefer to stay
at home as long as they can. The familiar environment provides
comfort in and of itself. Home health care is a service that
can be ordered by your physician if the patient requires
the skilled care of a nurse several times a week. With this
service, a nurse’s aide may also be available to help
with personal care such as bathing and grooming.
Home health care does not provide
supportive services such as shopping, laundry, or housecleaning.
If the patient needs this kind of general help around the
house, you may want to contact a company that offers in-home
care providers. Although this term sounds very similar to
the term home health care, this type of care encompasses
a broader range of services. You do not need a doctor’s
orders to work with an in-home care provider. However, because
supportive care (housekeeping, laundry, and cooking) is not
considered to be medical assistance, it is not generally
covered by insurance. People who require both supportive
services and personal or skilled care often turn to in-home
care providers because home health care agencies usually
offer only personal and skilled care.
Staffing: Depending on the
hiring practices of the company, personal care may be provided
by a certified nursing assistant or by noncertified staff.
Skilled care, as described above, must be performed by a
licensed practical or registered nurse (LPN or RN). Supportive
care is usually provided by unlicensed personnel. People
who choose to stay at home can also receive help from hospice
provided they meet the eligibility requirements noted earlier.
The financial side: Services
provided in the home may be expensive depending on insurance
coverage, the patient’s financial situation, and the
amount and type of services used. Medicare and most private
insurance will cover skilled care and some personal care,
at least for a limited time. To be eligible, the patient
must be considered “homebound” (i.e., leaving
home for activities such as medical appointments or church
requires considerable effort). Unless the patient is on Medicaid,
the cost of supportive services (e.g., meal preparation,
light housekeeping, help getting to the bathroom) is not
reimbursed by Medicare or insurance and must be paid for
by the family.
(Return to list)
Skilled nursing facilities
Skilled nursing facilities
are designed to provide care for patients with numerous or
complex personal care needs that require 24-hour-a-day assistance.
Depending on the family’s finances and care-giving
abilities, the best care may involve a move to a skilled
nursing facility. If the person you care for is terminally
ill and nearing the end of his or her life, you may want
to look for a facility that recognizes the special needs
that families have at this time. Many skilled nursing facilities
have designated private rooms with extra space and beds so
family members can visit and stay overnight.
Staffing: At the skilled nursing
facility, licensed staff provide supportive, personal, and
skilled care services 24 hours a day. Depending on the facility,
the hospice team can generally offer spiritual, physical,
and social support services for nursing home residents.
The financial side: Medicare
has very specific regulations about when it will and won’t
cover care in a skilled nursing facility. It also includes
regulations about when a patient can stay at a skilled nursing
facility and also receive hospice care. It is best to talk
with the staff of the facility or a hospice social worker
to determine if your situation qualifies you for Medicare
coverage. Persons with low income may be able to receive
assistance from Medicaid if a doctor certifies that they
need around-the-clock skilled care. (Return to list)
Assisted living facilities
If the patient has access to
some help, for instance a spouse who is able to provide personal
care, assisted living may be a good choice. Assisted living
facilities provide assistance with a few tasks such as meal
preparation, light housekeeping, and reminders to take medication.
These facilities usually comprise unfurnished one-bedroom
and studio apartments. They are very social settings and
often include organized activities and a central dining room
for meals. This arrangement can be very helpful not only
for the patient, but also for a care-giving spouse because
it offsets the isolation common to people caring for the
seriously ill. If the person who is ill needs more help than
that provided at assisted living facilities and no spouse
or family member is available to give this care, you can
usually arrange for home health care or in-home care providers
to assist with these needs.
Staffing: Depending on the
hiring practices of the facility, non-nursing services may
be provided by certified nursing assistants or non-certified
personnel. Skilled care must be performed by an LPN or an
RN. At most assisted living facilities, a licensed nurse
consultant is available but is not necessarily on site every
day.
The financial side: Because
the care provided in an assisted living facility is considered
to be supportive service, Medicare does not reimburse the
cost of the monthly fee. Many assisted living facilities
do accept reimbursement under Medicaid. It is also becoming
more common for long-term care insurance policies to cover
care in assisted living facilities. Reimbursable skilled
services (i.e., home health care) can be provided in an assisted
living facility, as can hospice. Visit with the administrator
or social worker of the facility you are considering to determine
options available to you. (Return to list)
Residential care facilities
“First cousin” to
the assisted living facility, a residential care facility
offers more support and is appropriate for people who have
multiple care needs. On the continuum of care, this option
falls between a skilled nursing facility and assisted living.
If the person you care for needs more help than housekeeping
and meals but does not need around-the-clock nursing attention,
a residential care facility may be the best option. Many
of these facilities specialize in care for persons with Alzheimer’s
or other forms of dementia. Because the amount of services
provided varies between facilities, it is best to check with
each one regarding staffing and financial arrangements. (Return
to list)
Adult foster homes
Adult foster homes typically
are family-run businesses where the owner of the house takes
in older adult boarders who can no longer live on their own.
An adult foster home is generally an appropriate choice if
the patient needs only minimal help and some supportive or
personal care services. (Some foster homes, however, are
certified to provide more-intensive care.) As compared with
other facilities, adult foster homes are small, with four
to eight residents living in a single family home. Some homes
provide private bedrooms; others offer the cost savings of
sharing with a roommate. Usually the foster home provides
the furniture, but residents bring their own personal items
to decorate the room. In keeping with the homelike setting,
meals are typically served family style, with residents gathering
to eat together in the dining room.
Staffing: Depending on the
hiring practices of the foster home, supportive and personal
care services may be provided by a non-certified or certified
nursing assistant. Foster homes usually do not have a licensed
nurse on the premises. Regulation of adult foster homes varies
quite a bit from state to state.
The financial side: As with
an assisted living facility, most of the care provided at
a foster home is supportive in nature and therefore is not
reimbursed by Medicare or other medical insurance. If the
owner of the foster home is amenable, reimbursable skilled
care can be provided in the foster home setting by outside
services such as hospice or home health care. (Return
to list)
A safety note
Many family members worry about
the safety of their loved one when they need to have others
provide care. To ease your mind, when you call various facilities
about their services, you may want to ask if a criminal background
check and drug testing are a routine part of the company’s
hiring procedure. (Return to list)
|
|
