Hospice care is palliative care given to individuals who are terminally ill, with an expected survival of six months or less. The focus of hospice care is on meeting the physical, emotional, and spiritual needs of the dying individual, while fostering the highest quality of life possible.
Hospice services provide palliative care to individuals with a life expectancy of six months or less. Most hospice care is provided in the home, but may take place in a hospice home or a hospice/palliative care area within a medical facility. Requesting hospice care may be the first time that individuals, or their families, acknowledge that their condition is not treatable. It may be the first time that they have to deal with their death as a reality taking place within a few months. The emotional journey to be able to deal with these issues may take a while, and therefore may delay the time when the person begins to receive hospice care.
The focus of hospice is not on treatment, but on pain and symptom management, comfort measures, acknowledging that the individual will die, supporting the family, and trying to provide the best quality of life for the time remaining. Hospice functions under the philosophy that although some terminally ill patients may no longer receive treatment, they still require and deserve care.
Hospice care is interdisciplinary in nature, providing the services of physicians, nurses, social workers, physical, speech, or occupational therapists, clergy or other spiritual guides, health care aides, and volunteers. Home hospice care relies on the family and friends of the patient to provide most of the daily care. Nursing and other services are provided daily or weekly, but with 24 hours, 7 days a week on-call access. Addressing the spiritual needs of the hospice client is a fundamental aspect of hospice care.
Some studies about hospice care have gleaned the following:
- When asked their preference, about two-thirds of cancer patients said they preferred to die in their own home.
- The majority of patients still die in the hospital.
- When surveyed, about 95% of families who received hospice care said that it had been helpful.
- Although satisfied with hospice care, caregivers report the job of caregiving as having a negative impact on their own quality of life, and felt the job was burdensome.
- When compared to a control group of noncaregivers, caregivers had higher levels of depression, anxiety, anger, and health problems. Caregivers had a higher rate of deteriorating health, social, and occupational functioning.
- Quality of life was influenced by the individual's spiritual well-being.
- Hospice patients expressed feelings of conflict between a hope for living, and "living in hope, " being able to reconcile with others and coming to terms with death.
- Although hospice is focused on helping people in the last six months of their life, most hospice patients only receive about one month of hospice care prior to their death.
- Only 20% of physicians' prognoses about a patient's survival was accurate. Sixty-three percent were overly optimistic, and 17% were overly pessimistic. The more experience the physicians had, the better their accuracy of prognosis.
Hospice care was first established in the United States in 1974 in Connecticut. In 1969, the book "On Death and Dying", by Dr. Elizabeth Kugler-Ross identified five stages that a terminally ill person goes through. In the book, Dr. Kubler-Ross addressed the importance of patients having a role in the decisions affecting the quality of their life and death. In 1972 she testified at the first U.S. Senate national hearing on dying with dignity.
Deciding on hospice care is a choice made by the terminally ill individual. To be eligible, one's physician needs to document that the individual's survival is expected to be six months or less. Should the patient recover, and the prognosis change, the relationship with hospice is terminated, but can be reestablished when needed at a later date. Not all patients will choose hospice. If only home hospice care is available, individuals who would be eligible may decide that hospice is not a good choice for them. Reasons for not choosing home hospice include:
- The patient lives alone, with little or no family support available.
- The patient has a need for 24-hour nursing care.
- The patient has family, but they are unable to provide the supportive care required.
- The patient is concerned about being a burden to the caregiver.
- The patient feels more secure in a hospital environment.
A study looking at the communication between physicians and their dying patients found these issues to be very important:
- Being honest and straightforward with patients.
- A willingness to talk about dying.
- Being sensitive when conveying bad news.
- Listening to patients.
- Encouraging patients to ask questions.
- Finding a balance between being honest without discouraging hope.
A November 15, 2000 Journal of the American Medical Association article found that patients at the end of their life expressed these issues as important:
- being mentally aware
- not being a burden
- having their funeral arrangements planned
- helping others
- coming to peace with God
- freedom from pain
- talking about the meaning of death
- Among nine issues, dying at home was rated the least important.
Because time is limited for patients in hospice, patients and their caregivers need to act swiftly on areas of dissatisfaction, such as quality of care being provided or insufficient symptom management.
Curative treatments are not a part of hospice care. However, hospice places great importance on minimizing or alleviating pain and symptoms such as appetite loss (anorexia), fatigue, weakness, constipation, difficulty breathing, confusion, nausea and vomiting, cough, and dry or sore mouth. For many with advanced cancer, fatigue may be their worst symptom. Research has shown that a tailored exercise program can increase activity tolerance without increasing fatigue. In addition, patients reported an increase in quality of life and decreased anxiety. Patients who expressed the most fatigue showed the most decrease in fatigue with the exercise program. Many hospice patients have breakthrough pain in addition to their chronic pain. Research using a subcutaneous needle for pain control showed 88% pain control with this method when pain was not well controlled with oral medications. Chronic pain requires ongoing pain relief, such as might be handled with a pump or patch. Good pain control may mean waking the patient up at night for oral medication to prevent the pain from mounting during sleep.
Alternative and complementary therapies
Dealing with the issues of death may be addressed through talking with others, writing in a journal, creative
Dollinger, Malin, Ernest H. Rosenbaum, and Greg Cable. Everyone's Guide to Cancer Therapy, Revised Third Edition. Kansas City, MO: Somerville House Books Limited, 1997.
Teeley, Peter and Philip Bashe. The Complete Cancer Survival Guide. New York: Doubleday, 2000.
Steinhauser, K. E. et al. "Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers." Journal of the American Medical Association. (Nov 15, 2000):2476-482.
American Cancer Society. 800-ACS-2345. <http://www.cancer.org>.
American Pain Society. 4700 W. Lake Ave., Glenview, IL 60025. 847-375-4715. <http://ampainsoc.org>.
Hospice Association of America. 228 Seventh Street, SE;Washington, DC 20003. 202-546-4759. Fax: 202-547-9559. <www.hospice-america.org>.
National Association for Home Care. 228 7th Street, S.E.Washington, D.C. 20003. 202-547-7424. <http://www.nahc.org>.
National Cancer Institute. Building 31, Room 10A31, 31 Center Drive, MSC 2580, Bethesda, MD 20892-2580. 301-435-3848. <http://www.nci.nih.gov>.
National Center for Complementary and Alternative Medicine. NCCAM Clearinghouse, P.O. Box 8218, Silver Spring, MD 20907-8218. 888-644-6226. <http://nccam.nih.gov>.
Cancer Resources. 457 West 22nd Street, Suite B, New York, NY10011. 800-401-2233. Fax: 212-243-1063. e-mail: email@example.com. <http://www.cancerresouces.com>.
Esther Csapo Rastegari, R.N., B.S.N., Ed.M.
—Care focused on providing comfort, not cure.
—An Asian practice of breathing and slow physical movements that develops strength and reduces stress.
QUESTIONS TO ASK THE DOCTOR
- What do you think is my prognosis?
- What choices are there to manage my pain and other symptoms?
- What level of symptom management can I expect to receive?
- What types of care, conventional or alternative, would improve the quality of the time I have left?
- Will my insurance cover the care you suggest?
- If I choose hospice care, how will that affect my relationship with my doctors and treatment team?
- What kind of support is there for my family, both until I die and afterwards?