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Hospice Care

Hospice (or palliative) care for patients with a terminal illness shifts the focus from aggressive treatment to treatment that provides physical comfort, control of symptoms, and general support to the patient and his or her family.

The philosophy of hospice is based on a concern for the medical, psychological, and spiritual needs of the patient and the family. Care might include management of the following symptoms:

• Agitation
• Confusion
• Difficulty breathing
• Nausea, vomiting
• Pain

The hospice team educates the patient and family about diet and nutrition, daily hygiene, and other aspects of personal care. They also prepare the patient and his or her family for death and provide bereavement counseling to the family. The patient and family have the last word in all decisions that are made.

The decision to receive hospice care is a complex one that involves not only the patient and their family, but also the primary physician, a nurse, and often a social worker. All caregivers need to research the decision and consider the emotional impact of ending active treatment. Hospice care is appropriate for patients in the following circumstances:

• When adults have a prognosis of six months or less due to any illness
• When children have a life-limiting illness and uncertain diagnosis
• When curative treatment is no longer an option
• When the patient and family desire comfort, symptom control, and enhanced quality of life in a home-like setting
• When a physician thinks hospice can help

There are three different kinds of hospice care:

• At home with backup care in the hospital (the most common kind)
• In a freestanding hospice center
• In a palliative care unit of a hospital or long-term care facility

If the hospice care is received at home, a nurse provides most of the care, assisted by a home health aide. Hospice care received in a hospital may mean a combination of at-home and in-patient care. In a freestanding hospice center, a team of professionals on staff oversee the care with the medical director serving as liaison with the physician.

An early referral to hospice is a good idea. Early referrals allow the hospice staff to become more familiar with the patient and gain an understanding of the progress of the illness. Timely referrals also help the staff, the patient, and the family build a trusting relationship before the situation reaches a critical phase. Typically, the primary physician refers a patient to hospice services, although a social worker, member of the clergy, a nurse, of even a friend might refer a patient. The members of a hospice care team can include nurses, social workers, certified home health aides, chaplains, bereavement counselors, volunteers, medical directors, and personal physicians. The primary physician may coordinate the services, although sometimes a nurse or social worker serves as coordinator. Together, all of the members develop a plan of care that aims to provide relief, comfort, and peacefulness.

Some people find that hospice care too difficult and upsetting. But most people who choose hospice care appreciate the support that they receive for all their needs. They feel that they can live as fully as possible and with dignity through their remaining months.

For more information about hospice care, talk with your doctor, a nurse, a local Visiting Nurses Association, or go to the National Hospice and Palliative Care Organization.

The Patient
The patient is the most important member of the oncology team. Many resources are readily available to help patients become educated consumers about their condition, their treatment options, and about their healthcare providers. Patients should not hesitate to voice their concerns, air their questions, or seek additional information at any stage of illness.

Medical literature can be difficult to navigate, but there are numerous patient education materials written with patients in mind, including the resources available on this website. In-depth research on the particular condition is usually the most relevant and helpful.

Another important element of cancer education occurs during an appointment. Many cancer survivors as well as physicians and social workers recommend that patients bring someone with them to their appointments. These people give moral support to the patient and help patients remember what was said during the appointment.

Patients should ask questions at all stages of the process. It is recommended that patients write down their questions before appointments with physicians and other members of the oncology team, and bring the questions to the appointment. During the appointment, patients should consider writing down the answers they receive. If patients do not understand an answer, they should ask for clarification or further resources. (See also: Questions to Ask Your Doctor)

Choosing the members of the oncology team also requires research. Primary care physicians refer patients to oncology specialists; however, patients should also consider doing their own research when choosing specialists and other members of their oncology team. Family, friends, and coworkers as well as local hospitals, support groups, and social workers can serve as resources in the search for physicians, nurses, psychologists, and others. Patients should meet with the prospective members, establish a rapport, ask for credentials, and evaluate their place on the team before adding them.

It is up to the patients to solicit the kind of help they need and to inquire about the different kinds of support available during and after treatment. Each member of an oncology team is a professional with specialized knowledge in his or her field. By bringing the team members together, a patient has access to a wide variety of information, resources, and support.

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