1. When should a decision about entering a hospice program be made and
who should make it?
At any time during a life-limiting illness, it's appropriate to
discuss all of a patient's care options, including hospice. By law the decision
belongs to the patient. Understandably, most people are uncomfortable with the
idea of stopping aggressive efforts to "beat" the disease. Hospice staff members
are highly sensitive to these concerns and always available to discuss them with
the patient and family.
2. Should I wait for our physician to raise the possibility of hospice,
or should I raise it first?
The patient and family should feel free to discuss hospice care at
any time with their physician, other health care professionals, clergy or
friends.
3. What if our physician doesn't know about hospice?
Most physicians know about hospice. If your physician wants more
information about hospice, it is available from the National Council of Hospice
Professionals Physician Section, medical societies, state hospice organizations,
or the National Hospice Helpline, 1-800-658-8898. In addition, physicians and
all others can also obtain information on hospice from the American Cancer
Society, the American Association of Retired Persons, and the Social Security
Administration.
4. Can a hospice patient who shows signs of recovery be returned to regular
medical treatment?
Certainly. If the patient's condition improves and the disease seems
to be in remission, patients can be discharged from hospice and return to
aggressive therapy or go on about their daily life. If the discharged patient
should later need to return to hospice care, Medicare and most private insurance
will allow additional coverage for this purpose.
5. What does the hospice admission process involve?
One of the first things the hospice program will do is contact the
patient's physician to make sure he or she agrees that hospice care is
appropriate for this patient at this time. (Most hospices have medical staff
available to help patients who have no physician.) The patient will be asked to
sign consent and insurance forms. These are similar to the forms patients sign
when they enter a hospital. The so-called "hospice election form" says that the
patient understands that the care is palliative (that is, aimed at pain relief
and symptom control) rather than curative. It also outlines the services
available. The form Medicare patients sign also tells how electing the Medicare
hospice benefit affects other Medicare coverage.
6. Is there any special equipment or changes I have to make in my home before
hospice care begins?
Your hospice provider will assess your needs, recommend any
equipment, and help make arrangements to obtain any necessary equipment. Often
the need for equipment is minimal at first and increases as the disease
progresses. In general, hospice will assist in any way it can to make home care
as convenient, clean and safe as possible.
7. How many family members or friends does it take to care for a patient at
home?
There's no set number. One of the first things a hospice team will do
is to prepare an individualized care plan that will, among other things, address
the amount of caregiving needed by the patient. Hospice staff visit regularly
and are always accessible to answer medical questions, provide support, and
teach caregivers.
8. Must someone be with the patient at all times?
In the early weeks of care, it's usually not necessary for someone to
be with the patient all the time. Later, however, since one of the most common
fears of patients is the fear of dying alone, hospice generally recommends
someone be there continuously. While family and friends do deliver most of the
care, hospices provide volunteers to assist with errands and to provide a break
and time away for primary caregivers.
9. How difficult is caring for a dying loved one at home?
It's never easy and sometimes can be quite hard. At the end of a
long, progressive illness, nights especially can be very long, lonely and scary.
So, hospices have staff available around the clock to consult by phone with the
family and make night visits if appropriate. To repeat: Hospice can also provide
trained volunteers to provide "respite care", to give family members a break
and/or provide companionship to the patient.
10. What specific assistance does hospice provide home-based patients?
Hospice patients are cared for by a team of physicians, nurses,
social workers, counselors, hospice certified nursing assistants, clergy,
therapists, and volunteers - and each provides assistance based on his or her
own area of expertise. In addition, hospices provide medications, supplies,
equipment, and hospital services, related to the terminal illness, and
additional helpers in the home, if and when needed.
11. Does hospice do anything to make death come sooner?
Hospice neither hastens nor postpones dying. Just as doctors and
midwives lend support and expertise during the time of child birth, hospice
provides its presence and specialized knowledge during the dying process.
12. Is caring for the patient at home the only place hospice care can be
delivered?
No. Although 90 percent of hospice patient time is spent in a
personal residence, some patients live in nursing homes or hospice centers.
13. How does hospice "manage pain"?
Hospice believes that emotional and spiritual pain are just as real
and in need of attention as physical pain, so it can address each. Hospice
nurses and doctors are up to date on the latest medications and devices for pain
and symptom relief. In addition, physical and occupational therapists can assist
patients to be as mobile and self sufficient as they wish, and they are often
joined by specialists schooled in music therapy, art therapy, massage and diet
counseling. Finally, various counselors, including clergy, are available to
assist family members as well as patients.
14. What is hospice's success rate in battling pain?
Very high. Using some combination of medications, counseling and
therapies, most patients can attain a level of comfort that is acceptable to
them.
15. Will medications prevent the patient from being able to talk or know what's
happening?
Usually not. It is the goal of hospice to have the patient as pain
free and alert as possible. By constantly consulting with the patient, hospices
have been very successful in reaching this goal.
16. Is hospice affiliated with any religious organization?
No. While some churches and religious groups have started hospices
(sometimes in connection with their hospitals), these hospices serve a broad
community and do not require patients to adhere to any particular set of
beliefs.
17. Is hospice care covered by insurance?
Hospice coverage is widely available. It is provided by Medicare
nationwide, by Medicaid in 39 states, and by most private insurance providers.
To be sure of coverage, families should, of course, check with their employer or
health insurance provider.
18. If the patient is eligible for Medicare, will there be any additional
expense to be paid?
Medicare covers all services and supplies for the hospice patient
related to the terminal illness. In some hospices, the patient may be required
to pay a 5 percent or $5 "co-payment" on medication and a 5 percent co-payment
for respite care. You should find out about any co-payment when selecting a
hospice.
19. If the patient is not covered by Medicare or any other health insurance,
will hospice still provide care?
The first thing hospice will do is assist families in finding out
whether the patient is eligible for any coverage they may not be aware of.
Barring this, most hospices will provide for anyone who cannot pay using money
raised from the community or from memorial or foundation gifts.
20. Does hospice provide any help to the family after the patient dies?
Hospice provides continuing contact and support for caregivers for at
least a year following the death of a loved one. Most hospices also sponsor
bereavement groups and support for anyone in the community who has experienced a
death of a family member, a friend, or similar losses.