Palliative Care and Hospice Care

Palliative care focuses on relieving burdensome symptoms and improving the quality of life for people and families living with a life-threatening chronic disease. Ideally, palliative care would be offered early in the course of a chronic disease, when treatment intended to lengthen life begins. Early palliative care helps to ensure that concerns about quality of life are addressed. Early palliative care also helps to ease the transition into the period when the disease is more advanced and when treatment intended to lengthen life is no longer seen as being desirable or useful. In reality, palliative care often begins more abruptly, at the point at which everyone agrees that the goal is more to improve comfort and less to extend the length of the person's life.

Physical suffering is not inevitable or unavoidable after a person is diagnosed with a life-threatening chronic disease. People have a right to expect adequate control of symptoms and tolerable side effects from treatment. However, people who experience symptoms that do not respond well to treatment sometimes have to choose between relief of those symptoms and side effects that might occur if treatments are intensified or more treatments are added. For example, a person with pain that is relieved by potentially sedating analgesics might face a choice of increasing the drug dosage to gain further relief at the expense of becoming sedated. Such choices, however, are the exception and not the rule.

If symptoms are poorly controlled, consultation with a specialist in palliative medicine may be worthwhile. Palliative medicine specialists work with people and their primary health care practitioners to relieve suffering and maximize quality of life. Referral to a palliative medicine specialist or to a palliative care team is appropriate at any time during the course of a chronic, potentially life-threatening disease when symptoms do not respond to treatment or when side effects of treatment interfere with the person's comfort.

Unlike palliative care, hospice care, as defined by the hospice benefit provided for by Medicare, is reserved exclusively for people expected to die within 6 months. Medicare-certified hospice programs aim to provide comprehensive services that help dying people and their families maximize the quality of life in the very late stages of a disease and to prepare for death. Doctors, nurses, nurse's aides, and social workers form the core of a hospice team. The team may also include nutritionists, psychologists, pharmacists, therapists, chaplains, ethicists, and volunteers.

Together the hospice team offers a broad range of services, from medical care to personal care (such as bathing, dressing, and grooming). In addition, the hospice team helps family members become more comfortable caring for their dying loved one and provides psychologic and spiritual counseling to help the dying person and family members prepare for death. Perhaps most importantly, the hospice team coordinates care, which is typically a great relief to families who have experienced the frequently fragmented care that characterizes much of modern medicine.

Hospice care can be provided in any setting, including a person's home (where more than 95% of hospice care in the United States is provided), a nursing home, or a hospital. People in hospice can choose to die in a variety of settings, depending on where they are most comfortable.

The cost of hospice is covered by most health care insurances, including Medicare, under two conditions. First, a doctor must certify that a person is expected to live less than 6 months. Because the time a person has left may be difficult to predict with some diseases, such as heart failure and lung disease, not everyone who might benefit from hospice care is deemed eligible. Second, a dying person must agree that relief of distress rather than cure is the goal of treatment.

Treatments that are intended to eliminate or reverse certain short-term symptoms or complications of a disease are allowed under the many insurance plans that cover hospice expenses as long as they are intended to relieve symptoms and not cure the underlying disease. For example, a person who has trouble breathing and a low number of red blood cells (anemia) might receive blood transfusions if the hospice team believes that increasing the number of red blood cells is an effective way to help relieve the person's shortness of breath. Hospices do try to avoid providing burdensome or minimally effective treatments. For most people this leads to more appropriate care and an improved quality of life for the entire family. People in hospice who decide they want to discontinue hospice care are free to leave.