Hospice care is for people who can no longer benefit from regular medical treatment and are likely in their final months of life.
Instead of continuing to try curing or delaying the fatal disease or condition, hospice ends curative treatment altogether. Instead, its goal is to control pain and other symptoms and make the patient's last stretch of life as comfortable as possible. Hospice can result in a significant improvement in the patient's quality of life, with a focus on her as a person rather than on her disease.
Hospice care can be received at home; someone can also receive this end-of-life care in a hospital, nursing home, or private hospice facility. Which is best depends on a patient's physical condition, whether the home is suited to providing hospice care, and the resources available in your community.
Hospice care isn't necessarily continuous, and a patient may switch into and out of it as a medical condition improves or deteriorates. For example, if a patient is in hospice care and goes into remission -- a period of relief from the symptoms of an illness -- the hospice care can be stopped, only to be resumed again if the symptoms reoccur or the condition gets worse.
The specific type of care and service hospice provides differs depending on individual needs and preferences, but it may include the following:
Medical care that involves monitoring the patient and administering medication, controlling pain, and providing other medical support
Family conferences, often facilitated by nurse or social worker, so family members can stay informed about a loved one's condition
Social services, including counseling and referrals or coordination with other community resources, to help the patient and his or her family
Transfers from home care to inpatient care, if needed
Spiritual services in keeping with the patient's religious or spiritual beliefs
Help with household chores, meals, and basic personal needs such as getting out of bed, walking, bathing, and dressing
Physical, occupational, and speech therapy to help maintain or regain lost functioning
Respite care to provide breaks for the usual caregivers
Bereavement support to help survivors cope and grieve after a death
It's important to speak up about things you like and don't like about the care a patient is receiving, including asking the agency to send (or not send) one aide or another if the patient develops a strong preference. You may even switch to another agency altogether if you or the person you're caring for isn't satisfied with the hospice care she's receiving.
When your loved one is diagnosed with a terminal illness, and when a doctor says that she has six months or fewer to live, she is eligible for hospice care. Find out more about when to call in hospice care.
If your loved one is battling a terminal illness but is expected to live longer than six months, look into palliative care.
If a patient requires elaborate medical care and monitoring, hospice care may be given in a building dedicated to hospice, or in a hospital or skilled nursing facility -- generally in specific rooms or wards decorated with touches such as curtains and couches to lend a more homelike feeling.
In hospice facilities, the usual rules for visiting hours and mealtime schedules are relaxed. Visitors are generally free to come and go as they wish, and meals are often family favorites. Again, the aim is to make the patient feel as comfortable and cared for as possible.
Most hospice care is provided in the patient's home. If your loved one's symptoms are controlled, her care will be delivered by visiting nurses, social workers, aides, and counselors as needed. If her symptoms can't be controlled or if she experiences severe distress or pain, she may need continuous nursing care, in which hospice nurses provide around-the-clock care at home.
Hospice care is typically a team effort, combining the talents and training of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers.
Your hospice agency will assign a case manager to make sure that all care needs are met and to coordinate the comings and goings of all involved, which is especially important if the care is at home.
If you or any family members are able, you can be responsible for much of the hands-on care, such as administering medicines and changing dressings. If you or family members aren't equipped to do this, hospice workers may help secure other caregivers to take over or contribute to the work.
Hospice care costs less than most other types of end-of-life care because it usually involves less technical equipment and fewer medical procedures; the patient is most often cared for at home instead of in a hospital; patients need only pay for the services they require; and there's no charge for care and services that family members, friends, or volunteers can provide.
Medicare, Medicaid or Medi-Cal, and some forms of private insurance cover nearly all costs of hospice care. And many hospice services offer care free or based on a sliding scale to those with low incomes. A typical range for cost paid out of pocket is about $150 per day for care at home to $650 daily for constant care in a facility.
Get more information about hospice care that is covered by Medicare.
During an initial orientation meeting, hospice workers meet with you, the patient, and interested family members to assess the plan of care.
If you'll be providing care at home, the orientation workers will evaluate whether the place needs to be equipped with any special gear, such as an elevating hospital bed, a pad to help prevent bedsores, protective coverings for the floor, or ramps for a wheelchair. They may also investigate details ranging from the neighbors to nearby barking dogs to the number of steps in the patient's house.
There's usually a flurry of activity when the hospice agency first gets involved, with various hospice staff visiting the patient and assessing her needs. Then a regular routine is established, with one or more aides visiting on a schedule. This schedule changes as the patient's needs change.
A patient's need for hospice is evaluated after 90 days to determine if it's still appropriate. It's evaluated again at the end of another 90 days and can be continued in 60-day segments after that. Although intended only for a six-month period, hospice often lasts longer than that because many people live longer than the original six-month prognosis.
If your loved one and her doctor agree that hospice is the right choice, you can help her choose a hospice agency. Ask your loved one's doctor for recommendations; you can also ask for advice from hospital discharge planners or your loved one's assisted living community or nursing home. Be sure to look up all your options in our Hospice Directory so you can learn more details and read any reviews from other families.
Once your loved one chooses a hospice agency, she must formally enroll in it. The agency handles all the paperwork. If your loved one isn't physically or mentally able to give consent, the person who holds power of attorney will need to enroll her.
Be sure that your hospice agency is Medicare certified; Medicare is the primary source of reimbursement for hospice care. In addition, look to see whether the hospice is "Joint Commission Certified," which means it has met a higher standard set by the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO). Hospices voluntarily submit to receive this certification; when they receive it, you can rest assured they are truly excellent.