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The term hospice is frequently misunderstood and is equated in many persons minds with imminent death. On the contrary, hospice care focuses on quality of life, on the wishes of the patient and family, and on easing distress at the end of life and the months preceding death.
What is hospice?
Hospice is a type of health care that focuses on the relief of a terminally ill patient’s distress and symptoms and attending to their emotional and spiritual needs during the final stages of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be difficult, be likely to cause more symptoms, or are not aligned with a person’s goals.
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. Hospice provides all medications, services, and equipment necessary. Hospice also offers bereavement care (grief support) for up to 13 months.
What is the philosophy of hospice?
Hospice care provides compassionate care for people in the last phases of incurable disease or simply aging so that they may live as fully and comfortably as possible. The hospice philosophy accepts death as the final stage of life: it affirms life but does not try to hasten or postpone death. It concerns itself with providing the individual and the family with support and choices so that everyone can be fully present.
To quote Dame Cicely Saunders, founder of the first modern hospice, “You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”
Who can benefit from hospice care?
Given that we are all mortal, eventually most of us. Hospice wraps itself around a patient and family to provide support during a difficult and confusing time. Most of us have never been in the presence of a person towards the end of their life, much less actually dying. Hospice staff can explain what is going on, how to take care of the person, what to expect. Medicare certified hospices must have a 24/7 telephone line to call when crises or questions arise, so no one is alone trying to figure out what to do or whether or not to call 911. Hospice can advise on and provide medications to make the patient more comfortable and instruct the caregivers in their use.
Is accepting hospice care giving up?
This seems to be the understanding of many people. However, there is another way to look at it.
In many ways choosing hospice is the opposite of giving up; choosing hospice is actively choosing to have a voice and some control during the last stages of one’s life. Instead of being pushed around by the processes and procedures of the healthcare system, we can choose care that is aligned with our values and priorities. Those persons who want everything possible done, can and should receive that care, but many people would choose a less intrusive path.
What services does hospice offer?
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 team usually consists of:
Clergy or other counselors
Home health aides
Hospice physician (or medical director)
Speech, physical, and occupational therapists, if needed
The patient’s personal physician may be included
Often, persons 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.
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.
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.
What does the hospice 6-month requirement mean?
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 fewer 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.
What happens if someone under hospice care lives longer than 6 months?
If the doctor continues to certify that the person is still eligible, Medicare can continue to pay for hospice services. It is also possible to leave hospice care for a while and later return if your doctor again thinks you are eligible.