End of Life
Places Of Care
End-of-life care can be provided in many places, including
- at home
- in hospice care centers
- in nursing homes
- in hospitals/critical care units.
The Benefits and Challenges of Care at Home
There are many potential benefits to keeping someone who needs end-of-life care in the setting they know best -- home. Family and friends can come and go freely, and making adjustments to ensure comfort and privacy may be easier than in a hospital. The patient may also experience less mental confusion and sleep more deeply when at home.
The potential benefits, however, must be carefully weighed against the resources available to family caregivers. Caring for someone near the end of life at home can be a big job -- physically, emotionally, and financially. The stress may at times feel overwhelming. Without adequate support from family members and support services such as home care and hospice, many caregivers “burn out.” (To learn more about caring for someone near the end of life at home, see Support for Caregivers).
Arranging for Home Care
If the patient is coming home from a hospital, a hospital discharge planner, usually a social worker, may help you plan how best to provide palliative care in the home. Your local Area Agency on Aging might also be able to recommend sources of help, such as a visiting nurse association or home care agency.
It is also important to work with the dying person’s health care provider, who will still oversee the patient’s care. He or she will arrange for new services, adjust treatments, and order medicines as needed. Arranging for special equipment, such as a hospital bed, and hiring a home health aide can also help make caring for a dying person at home easier and more comfortable.
Services of Home Health Aides
Personal and home health aides -- also called homemakers, caregivers, companions, and personal attendants -- work under the supervision of a registered nurse, licensed practical nurse, or therapist.
Aides help with activities of daily living such as bathing, dressing, and feeding, and making sure a dying person is safe. They can also provide housekeeping services such as doing laundry, changing bed linens, food shopping, and cooking.
Ask for Help
Don’t be afraid to ask family and friends for help -- they may be willing but hesitate to “intrude” during a difficult time.
Hospice Care Centers
In general, hospice is not tied to a specific place, but can be provided in the home, at an assisted living facility or nursing home, or in a hospital.
There are also inpatient hospice centers, which usually admit only patients who are actively dying with difficult-to-manage symptoms. The average stay in an inpatient hospice center is typically just a few days. If a patient improves, he or she is usually discharged to home hospice or a long-term care facility such as a nursing home.
A social worker can assist you in finding a hospice care program that's a good fit. Here are some things to consider when choosing a hospice center.
- Is the program certified?
- What services does it offer to the patient and family members?
- What's the cost?
- What's the process of being accepted into the center?
- Is the hospice center located near family and friends who can help provide care?
Nursing homes, also called skilled nursing facilities, provide a wide range of health and personal care services. Their services focus on medical care more than most assisted living facilities. These services typically include nursing care, 24-hour supervision, three meals a day, and assistance with everyday activities. Rehabilitation services such as physical, occupational, and speech therapy are also available.
Some people stay at a nursing home for a short time after being in the hospital. After they recover, they go home. However, most nursing home residents live there permanently because they have ongoing physical or mental conditions that require constant care and supervision.
Hospital/Critical Care Units
Hospitals offer a full range of treatment choices, tests, and medical care, including around-the-clock doctors and nurses. Hospital-based health care providers know what needs to be done for someone who is dying. This can be very reassuring for that person, as well as family and friends.
Although hospitals have rules, they can be flexible, such as allowing for relaxed visiting hours for family of a dying person.
Intensive Care Units (ICUs)
Many hospitals also have intensive care units (ICUs) and coronary (heart) care units (CCUs), where specially trained staff (often called intensivists) can do everything medically possible to keep someone alive.
Patients in an ICU usually require technology to support life. They are attached to monitors to measure their heart rate, breathing, blood pressure, and other vital signs. They often have various pumps and machines to deliver fluids, food, oxygen, and medicines. They require constant care by skilled nurses, doctors, therapists, and other clinicians.
ICU technologies are intended to maintain life while the body heals. However, it is important to know that being in the ICU may only prolong the dying process.
The Dying Process and the ICU
Most ICU clinicians are focused on saving lives. Some may even feel that death indicates a failure on their part. For these and other reasons, ICU clinicians may find it hard to discuss the end-of-life care needs of dying patients with their families.
For the family of a dying person, the ICU can be an unfamiliar and frightening environment. It is often very busy and noisy. The dying person’s condition can change suddenly. You may struggle to make sense of all that is going on.
Dying in an ICU often involves a decision to withhold or withdraw life support measures, such as a ventilator. Because few ICU patients are able to indicate their wishes at this time, such decisions are often made together by family members and ICU clinicians.
Communicating in an ICU
These discussions are often called family conferences and may be requested by either the family or the ICU clinician. Research has found that the most effective family conferences include
- introductions so clinicians and family members know each other by name
- an update on the patient’s condition and what is likely to happen next (the patient’s prognosis)
- discussion about treatment options and the patient’s wishes.
(To learn more about communicating in an ICU, see Because of Nursing Research: End-of-Life Care in the ICU)
Don’t be afraid to ask for information and support. ICU clinicians can and should provide updates on the patient’s condition and explain the available options for care.