- When should a decision about entering a hospice program be
made-and who should make it?
- At any time during a life-threatening illness, it’s appropriate
to discuss all of the patient’s care options, including hospice.
By law the decision belongs to the patient. Understandably, most
people are uncomfortable with the idea of stopping an all-out
effort to “beat” their disease. Hospice staff members are highly
sensitive to these concerns and are always available to discuss
them with the patient, family and physician.
- 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 healthcare
professionals, clergy or friends.
- What if our physician doesn’t know about hospice?
- Most physician know about hospice. If your physician wants more
information, it is available from the American Academy of
Hospice and Palliative Medicine, medical societies, state
hospice organizations, local hospices, or the National Hospices
and Palliative Care Organization Helpline, 1-800-658-8898. In
addition, Physicians and all others can obtain information on
hospice from the American Cancer Society, the American
Association of Retired Persons, and the Social Security
- Can a hospice patient who shows signs of recovery be returned to
regular medical treatment?
- Certainly. If improvement in the condition occurs and the
disease seems to be in remission, the patient can be discharged
from hospice and return to aggressive therapy or go on about his
or her daily life.
- If a discharged patient should later need to return to hospice
care, Medicare and most private insurance will allow additional
coverage for this purpose.
- What does the hospice admission process involve?
- One of the first things hospice 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. (Hospice may have
medical staff available to help patients who have no physician.)
The patient will also 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 for a life-limiting illness.
- 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
necessary equipment, and help make arrangements to obtain it.
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 and safe as possible.
- 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 prepare an individualized care plan that will, among
other things, address the amount of care giving patient needs.
Hospice staff visit regularly and are always accessible to
answer questions and provide support.
- Must someone be with the patient at all times?
- In the early weeks 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 encourages someone be there continuously.
- While family and friends must be relied on to give most of the
care, hospices do provide volunteers to assist with errands and
to provide a break and time away for major caregivers.
- 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 with the family and make night visits as
- What specific assistance does hospice provide home-based
- Hospice patients are cared for by a team of doctors, nurses,
social workers, counselors, home health aides, spiritual
caregivers, therapists, and volunteers - and each provides
assistance base on his or her area of expertise. In addition,
hospices help provide medications, supplies, equipment, hospital
services, and additional helpers in the home, as appropriate.
- Does hospice do anything to make death come sooner?
- Hospices do nothing either to speed up or to slow down the dying
process. Just as doctors and midwives lend support and expertise
during the time of child birth, so hospice provides its presence
and specialized knowledge during the dying process.
- Is the home the only place hospice care can be delivered?
- No. Although most hospice services are delivered in a personal
residence, some patients are cared for in nursing homes or
- How does hospice “manage pain”?
- 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 assist patients
to be as mobile and self-sufficient as possible, and they are
often joined by specialists schooled in music therapy, art
therapy, diet counseling, and other therapies.
- Hospice believes that emotional and spiritual pain are just as
real and in need of attention as physical pain, so it addresses
these, as well. Counselors, including spiritual caregivers, are
available to assist family members as well as patients.
- 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.
- Will medication prevent the patient from being able to talk or
know what’s happening?
- Usually not. It is the goal of hospice to help patients be as
comfortable and alert as they desire. By constantly consulting
with the patient, hospices have been very successful in reaching
- Is hospice affiliated with any religious organization?
- Hospice care is not an off-shoot of any religion. While some
religious organizations 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.
- Is hospice care covered by insurance?
- Hospice coverage is widely available. It is provided by Medicare
nationwide, by Medicaid in some 47 states, and by most private
health insurance policies. To be sure of coverage, families
should, of course, check with their employer or health insurance
- 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 care
for those who cannot pay, using money raised from the community
or from memorial or foundation gifts.
- Does hospice provide any help to the family after the patient
- Hospice provides continuing contact and support for family and
friends for at least a year following the death of a loved one.
Most hospices also provide supportive services for anyone in the
community who has experienced the death of a family member, a
friend, or a loved one.
- If the patient is eligible for Medicare, will there be any
additional expenses to be paid?
- Medicare covers most services and supplies related to the
life-limiting illness for the hospice patient. In some hospices,
the patient may be required to pay a 5% or $5 "co-payment" on
medication and a 5% co-payment for respite care. You should find
out about any co-payment when choosing a hospice.
- In medical terms, when is it time to consider hospice as an
- It is time to consider hospice care when someone exhibits one or
more of the following core and/or disease-specific indicators:
- Patient/family choose comfort care as opposed to curative care
- Loss of function/physical decline
- Increase in hospitalizations
- Dependence in most activities of daily living
- Multiple co-morbidities
- Increase in ER visits
- Weight loss
- Amyotrophic Lateral Sclerosis
- Unable to walk, needs assistance with ADLs
- Barely intelligible speech
- Difficulty swallowing
- Weight loss
- Significant dyspnea
- Co-morbidities: pneumonia, URI
- Metastasis to multiple sites
- Weight loss
- Patient/family choose palliative care
- CVA or Coma
- Decreased level of consciousness, coma or persistent vegetative state
- Post-stroke dementia
- Decreased nutritional status (despite artificial nutrition)
- Dementia and/or General Decline
- Unable to walk without assistance
- Urinary and fecal incontinence
- Speech limited to a few words
- Unable to dress without assistance
- Unable to sit up or hold head up
- Complications: pneumonia, UTI, sepsis, pressure ulcers
- Difficulty Swallowing/eating
- Weight loss
- Heart Disease – CHF
- NYHA Class III or IV
- Discomfort with physical activity
- Symptomatic despite maximal medical management
- Arrhythmias resistant to treatment
- History of cardiac arrest
- Cardiogenic embolic CVA
- Liver Disease
- Not a transplant candidate
- Ascites despite maximum diuretics
- Hepatorenal syndrome
- Encephalopathy with somnolence, coma
- Recurrent variceal bleeding
- Pulmonary Disease - COPD
- Dyspnea at rest
- Poor response to bronchodilators
- Recurrent pulmonary infections
- Cor pulmonale/right heart failure
- Weight loss
- Resting tachycardia
- Renal Disease
- Plan for discontinuing dialysis
- rapidly declining in spite of dialysis
- no renal transplant
- Displays signs of uremia (confusion, nausea, pruritus, restlessness, pericarditis)
- Intractable fluid overload