You are here: Home Managing Your ... Hospice Care 101 What Is Hospice? Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

Hospice care is a concept which emphasizes caring for the patient who is in an apparent end-of- life stage, in a comfortable physical and emotional surrounding.

Rather than continuing to treat a condition for which there  is no cure, the focus is placed on quality end-of-life care:  providing peace, comfort, and dignity,  including psychological and spiritual support.   Generally, hospice care does not include treatment for the underlying health condition. However, some hospices do accept patients before they have stopped aggressive  treatment and continue to treat the condition.

Hospice started with the concept of caring for travelers. Today, hospice care is a multi-disciplinary approach that provides a variety of services -- all of which are geared to care for the patient and the patient's loved ones.

Hospice care can be given at home, in a hospice,  or in a medical facility such as a hospital.

Hospice care is usually coordinated by a nurse who is particularly skilled at symptom control. Other members of the hospice team visit the patient as needed. Other team members generally include:

  • Doctors
  • Home health aides
  • Social workers
  • Spiritual advisors and/or clergy
  • Family.

Volunteers outside of the circle of family and friends are generally available to provide a break for loved ones.

Although hospice staff is not generally on premises all the time, staff members are usually available on call 24/7.

Counseling is generally provided to family members (including after the patient's death).

For additional information see:

Hospice History

Throughout  history friends and family generally cared for people at the end of their lives at home. 

In  modern times, as medical treatments dramatically improved, most people spend their  final days in a hospital or nursing home.  Unfortunately this means that many patients

  • Are separated from their families and loved ones 
  • Experience feelings of isolation which is ironically  accompanied by a lack personal privacy
  • Receive aggressive or other unwanted treatment after it is no  longer effective, and
  • Experience unnecessary pain and suffering due to inadequate  pain management.

Hospice was designed as an alternative to end-of-life  hospital care. Hospice allows patients greater control over their own care,  while remaining in the comfort of home (or a home-like setting), surrounded by  family, friends, their belongings, pets and loved ones. 

In 1974, the first hospice program was established in the United States.  There are currently about 3,000 hospice  programs in the U.S. 

What Is Hospice?

Hospice goal

A principal goal of hospice is to control pain and other symptoms (also known as palliative care) while allowing the patient to remain as alert and productive as possible.    The patient's comfort overrides all other concerns. There is generally no further attempt to cure the condition, only to care for the patient.

Where hospice is given

While hospice care may be provided in a  hospital, private hospice center, or skilled nursing facility, most hospice care is provided in the home.  Family and  loved ones provide the majority of day-to-day home hospice care. The hospice  team provides both the patient and family caregivers with the medical  assistance and emotional support that they need.

The hospice team

The hospice team includes: you, your family, your doctor, a  hospice doctor, a nurse, a counselor, social worker, home health aide,  homemaker and possibly volunteers. A spiritual counselor is generally also  involved.  The hospice doctor and nurse  are generally on call 24/7.

Your doctor and the hospice team work  together to create a plan of care that meets your individual needs.

You can choose a nurse practitioner to be your attending  physician instead of a regular doctor. However, only your doctor and the  hospice medical director can certify that you meet the requirements about the  type of illness and projected amount of time to live.

The setting

Even outside the home, hospice care is  generally provided in a home-like setting, under the rules and regulations of  the hospice (rather than the sponsoring institution.) For example, if a hospice  is located in a hospital, hospice rules govern rather than the hospital's.   

No affiliation

Hospice care is not affiliated with any particular religion,  although religious organizations may sponsor hospice care.

You can stop hospice care at any time

A patient can stop hospice care and resume traditional  treatment at any time. If you choose to leave hospice care to resume  traditional treatment, you can still return to hospice care. Most insurers,  including Medicare, will allow for readmission. At the other extreme, you can  stop all medical care at any time.

What Services Are Provided In Hospice Care?

While different hospices offer different services, a "full  service" hospice program offers the following services, each of which are  tailored to meet the patient's specific needs:

Medical care

  • Medical care is primarily to treat your symptoms and to keep you comfortable. 
  • Common complications are also treated -- for instance blood clots or urinary tract infections. 
  • Some private insurance carriers extend coverage to allow treatment or drugs to fight the illness in addition to caring for patient.

Physician care 

  • Your medical care, including pain relief, is generally determined by your primary care doctor. He or she also works with the other members of your hospice team.  
  • In addition, hospices generally have a physician medical director who serves as a consultant and resource for you and your primary care doctor.
  • In general, the doctor for your health condition will not visit you at home or in a hospice. Expect that most contact with the doctor will be on the phone, or through a hospice nurse.

Nursing care

  • Hospice nursing care is generally provided by a Registered Nurse ("RN").  
  • RN's are responsible for coordinating the plan of care and providing patient evaluations. They also serve as the go-between among patients, family and the physician.

Medical Social Services  

  • Hospice social services are designed to meet your social, emotional and economic needs. 
  • Services range from arranging for meal delivery (such as Meals on Wheels) to locating local funds for medical assistance. 
  • These services are generally provided by a social worker who can help to maximize use of community resources. 

Spiritual counseling and support for patient and  family. 

  • Clergy  and other counselors provide these services.   
  • Hospice programs may also use church groups and their members to supply voluntary services, as requested by the patient and family. 

Home health aide services may include bathing and  other hygiene and personal care. 

Physical, occupational, and speech therapies are  available to assist patients in being mobile and self-sufficient. Patients  learn new ways to accomplish everyday tasks such as walking, communicating, and  getting dressed. 

Nutritional counseling services provided by a dietician.

Support services, provided by trained volunteers,  include companionship, preparing meals, light housekeeping, and running  errands.

Hospice care does not generally mean that someone must be  with the patient all the time. There may be a desire to have one with the  patient full time as death approaches.

Medical Equipment and supplies such as hospital beds,  wheelchairs, walkers, oxygen, bandages or catheters, that may be necessary to  provide care in the home. 

Short-term home care supplied  by hospice staff, in the event that the family caregivers are temporarily  unable to provide 24-hour care (usually during an emergency situation). The staff will provide care ranging from 8 to 24 hour periods on a short-term  basis.

Hospice inpatient care is provided in a hospital, nursing home or the hospice's private care facility  to provide additional pain or symptom management. After discharge from a  facility, home hospice care is usually reinstated. "Inpatient care" is the term  that Medicare, Medicaid and hospice agencies use in describing this service.

24 hour on call service is available for your  questions and those of your caretakers, counseling, and possible home visits  during emergency periods.    

Respite care is designed to provide the family  with a "respite" - a temporary break from their care duties. Respite care is  not volunteers periodically staying with a patient for a few hours at a time to  allow family members to perform out-of-home chores or otherwise take a break.

Respite care is generally provided in a hospital, nursing  home or other hospice facility. While respite  care could be provided at home, inpatient care is generally the only type of  respite care for which insurers will pay. 

Bereavement counseling and support for the family  after their loss.  This service may be  conducted by a trained volunteer or counselor. It includes family support  groups and referrals to medical/mental health professionals when necessary.  Counseling may continue for at least a year.