If you have been a family caregiver for a while, you probably have been through a lot of transitions. Maybe your family member was in and out of the hospital several times. Perhaps he or she spent a few weeks in a rehabilitation unit or received home care services. Or perhaps he or she is now a resident in a long-term care facility. In each of these transitions, you had to meet new health care professionals, learn more about your family member’s health, and adjust to new care-giving tasks and routines. Now you are coming to a new transition. Maybe your family member’s health is getting worse. Perhaps the treatments intended to prolong his or her life are not working or causing a lot of pain and suffering. You may have a lot of questions and concerns about what to do. You may also be dealing with many feelings as your family member faces a serious and life threatening illness, or is dying. When you are thinking about whether your family member’s current care is appropriate for his or her condition, here are some questions to ask: What is the prognosis – the expected course – of my family member’s illness? What are the goals for care? For instance, is the goal to cure the disease or to provide comfort and improve the quality of my family member’s life? This guide is written as a way to help you through this transition. The first section explains palliative (PAL-ee-a-tive) care. The second section answers questions about hospice care.

Palliative Care;

 Palliative care can make a big difference in your family member’s treatment and quality of life when he or she has cancer, heart disease, respiratory disease, kidney failure, or other serious illness. Palliative care is a special form of medical care that helps patients feel relief from the pain, symptoms, and emotional distress caused by a serious illness or its treatment. This is much more than just “comfort care.” The goal of palliative care is to improve how a patient functions each day as well as improve his or her quality of life throughout the course of a serious illness. Palliative care can be used along with treatments meant to cure. A team provides palliative care. Team members often include specially trained doctors, nurses, and social workers along with pharmacists, nutritionists, chaplains, and other medical professionals. Palliative team members also include the patient and his or her family caregivers. The palliative care team works closely with family caregivers, your family member’s regular doctors, and others involved in the patient’s care. This offers an extra level of support. Palliative care can be useful at any time during a person’s illness. It is better to begin palliative care sooner, rather than later, but it is never too late. It may involve a few consultations, or ongoing care. While most palliative care services are given in hospitals, it sometimes is offered in outpatient clinics, home care, and long-term care facilities. Talk with your family member’s doctor if you think palliative care might help. Most health plans, including Medicare and Medicaid, will pay for palliative care just as they pay for many other medical services. But unlike hospice care, there is no Medicare benefit that pays just for palliative care


This part of the guide gives answers to many questions family caregivers ask about hospice. When should we start thinking about hospice care? When there are no more treatment options to cure your family member’s disease, hospice becomes an option. With hospice, the focus is on comfort and quality of life. Hospice may be the best option when you and your family members decide that treatment meant to cure is not worth its side effects, pain, and suffering. It helps to make the choice for hospice sooner rather than later. Many people delay since it marks a turning point in your family member’s care. This means that many patients receive hospice care for only a short period of time. Some patients and caregivers fear that choosing hospice means that nothing more can be done. But this is not the case. In fact, hospice patients often receive a lot of services to help improve their quality of life. Who decides about hospice care? As the family caregiver, you and your family member are the ones to decide about seeking hospice care. Many people find that it helps to make this choice only after talking with other family members, doctors, and caregivers. You must freely make the choice – meaning that no one can force you to accept hospice care. Your doctor may be the first one to suggest hospice care. Or you may be the first to mention it. Please do not be afraid to talk about hospice.

Hospice and palliative care comparison:

Palliative Care,and Hospice Care Goals; are to assess and treat the patient’s pain and other physical, psycho social, and spiritual problems. To keep the patient comfortable, as free as possible from pain and symptoms, and allow him or her to maintain a good quality of life for the time remaining. Hospice accepts death as an inevitable outcome for a patient with a terminal (end-stage) illness. In hospice, both the patient and family are the focus of care. Patients Palliative care accepts patients who have complicated or advanced medical disease. There is no time limit in terms of life expectancy – patients may or may not be dying. Patients can get treatments intended to cure. They also can participate in research studies. Hospice only accepts patients who are near the “end of life” (meaning they have a terminal illness) and are likely to die within 6 months if the disease runs its normal course. Where care occurs Palliative care is usually given in hospitals. Sometimes it takes place at nursing homes or assisted living facilities. Palliative care at home is possible but not readily available. Most hospice care happens at home, although it can also be given in other settings as well, such as the hospital, nursing home, or assisted living facility. Who provides the care Palliative care is a medical sub-specialty. This means that doctors and nurses who practice palliative care have extra training about ways to manage symptoms. They work with a team of other professionals. Hospice care is a team approach, led by doctors and nurses with special training. Specialists may provide spiritual, psycho social and other care. Hospice care may require a lot of time and effort from the family. Paying for services There is no special insurance benefit for palliative care. The patient’s health insurance generally covers palliative care services. Hospice is a Medicare (federally funded) program. Many state Medicaid plans and private health insurance plans pay for hospice. A patient who chooses the Medicare hospice benefit agrees to give up treatments meant to cure disease. This is in return for other types of support and supplies.