In this section you will find answers to frequently asked questions about
hospice care and related end-of-life matters.
Must a patient be “actively dying” in the last
few days of life in order to enroll in a hospice program?
When a patient enrolls in hospice, is he/she, in effect, “giving up hope”?
When a patient enrolls in hospice, must they give up their Primary Care
Physician?
Once a patient enrolls in hospice can he/she then change his/her mind
and seek curative treatment?
If a patient enrolls in hospice and subsequently elects to revoke hospice,
can they later re-enroll in hospice?
Is hospice only for cancer patients?
Must a patient be bed-bound to qualify for hospice?
Does hospice rely solely on morphine to control pain?
Is it true that hospice staff and volunteer intrude on the patient's home
life, disrupting the family's daily activities and displacing the family
as caregivers?
Must a patient wait for his/her physician to recommend hospice before seeking
hospice support?
Is hospice care expensive?
How can people most effectively prepare for the end-of-life, either their
own or that of their loved ones?
Q. Must a patient be “actively dying” in the last few
days of life in order to enroll in a hospice program?
A. No. Patients derive the most benefit
from a hospice program when they enroll as early in the course of a terminal
disease as possible. This allows the hospice staff to more successfully control
pain and other symptoms that affect the patient's quality of life. Early enrollment
allows time to thoroughly assess the patient's and family's needs and to put
in place a range of supportive services such as nutritional and dietary counseling.
Medicare certified hospices accept patients when a physician's best judgment,
the patient has 6 months or less to live is the disease runs its expected course.
Enrolling in hospice as soon after such a diagnosis as possible gives the patient
and the physician the best chance of safeguarding the patient's quality of
life.
Top Q. When a patient enrolls
in hospice, is he/she, in effect, “giving up hope”?
A. No. When a patient enrolls
in a hospice program it does not mean that they are simply giving up hope and
waiting to die. Rather it means that they are choosing to live each day as
fully as possible, as pain-free as possible, with as much control and functioning
as possible. Choosing hospice means choosing the hope and fullness that life
has to offer. At a certain stage of a disease process, it may become apparent
that further aggressive treatments are not going to cure the disease. Rather
than continue to pursue further heroic interventions that may cause additional
suffering and indignity while prolonging life for only a short period, patients
may choose to change the focus of their care to one that emphasizes comfort
and quality of life.
Top Q. When a patient enrolls
in hospice, must they give up their Primary Care Physician?
A. No. A Hospice patient's Primary
Care Physician typically continues to be responsible for the patient's care.
The hospice nurse provides continuous communication between the patient and
the Primary Care Physician. Hospice medical directors provide an additional
level of oversight.
Top Q. Once a patient enrolls
in hospice can he/she then change his/her mind and seek curative treatment?
A. Yes. Hospice strongly supports
patient choice. If a hospice patient wishes to seek curative treatment, he/she
may elect to revoke hospice care, at which time their regular insurance will
be activated with the same coverage that was provided prior to hospice enrollment.
Top Q. If a patient enrolls in
hospice and subsequently elects to revoke hospice, can they later re-enroll
in hospice?
A. Yes. You can say “goodbye” to
hospice repeatedly without jeopardizing your chance to re-enroll as long as
your condition meets the enrollment criteria. (For more detailed information
on enrollment criteria, see the Services section.)
Top Q. Is hospice only for cancer
patients?
A. No. Hospice accepts patients
with every kind of terminal diagnosis. Such diagnoses may include cancers as
well as chronic obstructive pulmonary disease (COPD), kidney disease, ALS (Lou
Gehrig's disease), Parkinson's, Alzheimer's, chronic heart failure (CHF), AIDS
and failure to thrive.
Top Q. Must a patient be bed-bound
to qualify for hospice?
A. No. Hospice patients do not
need to be bed-bound or house-bound. Indeed, because of the excellent care
they receive, some patients who are initially bed-bound when entering hospice
are subsequently able to get out of bed. When pain and other symptoms are properly
manages, many hospice patients can go out to dine, visit friends, or even continue
working.
Top Q. Does hospice rely solely
on morphine to control pain?
A. No. Hospice uses a wide range
of pain management techniques including simple analgesics, anti-depressants,
anti-convulsants, opiods, hot and cold compresses, distraction and massage.
Each patient is individually assessed in terms of his/her pain management needs,
and a pain management regimen is devised in accordance with his/her wishes.
Pain management is a central concern in hospice, and hospice nurses routinely
assess pain during every visit. Hospice nurses are among the best trained in
the healthcare field in terms of pain control. Research has shown that good
pain control promotes dignity and autonomy and lengthens life.
Top Q. Is it true that hospice
staff and volunteer intrude on the patient's home life, disrupting the family's
daily activities and displacing the family as caregivers?
A. No. Hospice staff and volunteers
are especially sensitive to the fact that they are guests in the patient's
home. They go the extra mile to ensure that they do not intrude on the patient's
and family's privacy and need for quiet and control. Hospice workers are taught
to “leave their slippers
and their own agendas at the door.” Hospice is a client-centered program, designed
to fit the beliefs and life-style of the patient and family. Hospice workers
recognize that this journey belongs, first and foremost, to the patient and
to the family.
Top Q. Must a patient wait for his/her
physician to recommend hospice before seeking hospice support?
A. No. Although most physicians
are familiar with hospice and with the signs and symptoms of impending death,
some may delay in suggesting hospice in favor of further curative treatments.
As the Governor's Blue Ribbon Panel on Living and Dying with Dignity reported, “hospice
care, a reasonable alternative to futile medical care, is not considered often
or early enough.” If a patient
or his/her family feels that they would benefit from hospice, they may make
a self-referral.
Top Q. Is hospice care expensive?
A. No. Most health insurance
plans include hospice as a covered benefit, including the core services of
the hospice professional team, medications for pain and symptoms related to
the terminal illness, medical supplies, durable medical equipment, lab services
and hospitalization for respite care. Hospice of Hilo accepts these insurance
reimbursements as payment in full. For patients without insurance coverage,
Hospice of Hilo makes available the core services of the professional team
at to cost. There is never a charge to the patient or family for our services.
Top Q. How can people most effectively
prepare for the end-of-life, either their own or that of their loved ones?
A. We have three suggestions
in this regard. First, we strongly encourage people to begin holding caring
conversations with their
immediate family members about the kind of care each one envisions for himself/herself
at the end of life. Too often families delay in having these kinds of conversations
because the subject is uncomfortable.
Second, take the time to complete an advance healthcare directive.
This document explicitly spells out how you wish to be cared for in the event
that you become unable to communicate your wishes. It also allows you to appoint
a healthcare director.
Third, take the proactive step of making your funeral arrangements now.
Taking these three steps can be one of the best gifts you will ever give your
family.
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