Hospice care focuses on quality of life when a cure is no longer possible, or the burdens of treatment outweigh the benefits. Hospice care is not just for cancer or for older people; it is for any serious illness at any age. Hospice care is an interdisciplinary team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s and family/inner circle’s wishes and needs.
Hospices care for people where they live. Although some hospice care is provided in hospitals, in-hospice facilities or nursing homes, most patients are cared for in the place they call home, which is where most people would prefer to be.
Although hospice provides a lot of support, the day-to-day care of a person receiving hospice care is provided by family, friends, the inner circle, or paid home health aides. The hospice team coaches caregivers on how to care for the patient and even provides respite care when caregivers need a break. Respite care can be for as short as a few hours or for as long as several days. Medicare covers up to 5 days of respite care at a time.
Hospice care is provided by a team that works together focusing on the patient’s needs whether physical, emotional, or spiritual. The goal is to keep the patient as pain-free as possible, with the loved ones nearby.
The interdisciplinary team usually consists of:
- Clergy or other counselors
- Hospice aides
- Hospice physician (or medical director)
- Social workers
- Trained volunteers
- Speech, physical, and occupational therapists, if needed
- The patient’s personal physician may be included
Often, people choose to have their primary doctor involved in medical care. Both the primary doctor and the hospice medical director may work together to coordinate the patient’s medical care, especially when symptoms are difficult to manage.
In many cases, the patient’s inner circle are the primary caregivers. As a relationship with hospice begins, hospice staff will want to know how best to support the patients and their caregivers.
Among its major responsibilities, the interdisciplinary hospice team:
- Manages the patient’s pain and symptoms
- Provides emotional support
- Provides medications, medical supplies and equipment
- Coaches caregivers on how to care for the patient
- Delivers special services like speech and physical therapy when needed
- Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home or when caregivers need respite time
- Provides grief support, also known as bereavement support.
Patients will not receive curative treatment for their specific illness but they will receive medications that enhance the quality of life, such as treatment for high blood pressure, anti-anxiety medications, and other medications to relieve any symptoms that they may have.
Will there be a patient-specific hospice team and how often will they visit?
Every person receiving hospice has access to their interdisciplinary team. They will work with you and your family to create a plan of care that will outline the actions and goals for your hospice care.
All visits are based on you and your family’s needs in the care plan and your medical condition during the course of the illness. The frequency of volunteers and spiritual care is often dependent upon request and the availability of these services. Travel requirements and other factors may cause some variation in how many individuals each hospice staff serves.
Discussing if someone needs to be with the patient 24/7
Hospice care is available ‘on call’ after the administrative office has closed, seven days a week, 24 hours a day. Hospices are required to have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call, as well.
It’s important to know that home hospice may require that someone be home with the patient 24 hours a day, 7 days a week. This may be a problem for people who live alone or whose partner or adult children have full-time jobs. But in most cases, creative scheduling and good team work among friends, inner circle, and paid home health aides can overcome this problem.
Members of the hospice staff will visit regularly to check on the patient, family, and caregivers. They will make sure that any symptoms are under control and give any needed care and services.
Getting hospice care outside of the home
Hospice services can be provided to a person who has a life-limiting illness wherever that person lives. This means a person living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility. The Medicare Hospice Benefit will cover the care related to your terminal illness, but it does not cover daily room and board charges of the facility. If you are eligible for Medicaid, Medicaid will cover room and board charges.
A growing number of hospice programs have their own hospice facility or have arrangements with nursing homes, hospitals or inpatient residential centers that care for people who cannot be cared for at home. However, the cost to live in these settings may not be fully covered by your insurance so it is best to find out if insurance covers this type of care before you call hospice.
Understanding the Medicare hospice 6-month requirement
Some people think that their doctor’s suggestion to consider hospice means that death is very near. That is not always the case at all. People often don’t begin hospice care soon enough to take full advantage of the help it offers.
In the U.S., people enrolled in Medicare can receive hospice care if their doctor thinks they have less than 6 months to live should their disease take its usual course. Doctors have a hard time predicting how long a person will live. Health often declines slowly, and some people might need a lot of help with daily living for more than six months before they die.
Talk with your doctor if you think a hospice program might be helpful. If they agree, but think it is too soon for Medicare to cover the services, then you can investigate other ways of paying for the services.
Respite care is a benefit from hospice for caregivers
For patients being cared for at home, some hospice services offer respite care to allow friends and family some time away from caregiving. Respite care can be given in up to 5-day periods of time, during which the patient is cared for either in the hospice facility or in beds that are set aside in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while having peace of mind. Respite care is also appropriate when a patient’s medical condition warrants a short-term inpatient stay for pain or other symptoms that cannot be managed at home.
Medicare benefits pay for patient transport and up to five consecutive days of inpatient care at a Medicare-approved nursing facility or hospital. You can get respite care more than once, but only on an occasional basis. Medicare guidelines allow for more than one respite occurrence, with each respite lasting no more than five days in a row. The five-days of respite include the day of admission, but not the day of discharge.