Approximately 30 percent of people who die in the United States choose hospice care during the last weeks of life. The average length of enrollment in hospice care was forty-eight days in 1999. Many of these patients die from cancer, but others have chronic, life-limiting diseases, such as cardiovascular or lung problems. Hospice is a major provider of end-of-life care to patients with HIV/AIDS and Alzheimer's disease. Hospice serves patients of all cultures and ethnicities, although barriers to general health care access may cause minorities to distrust hospice/palliative care as a form of denial of needed services. Fear that providers will not respect customs and traditions may also affect acceptance of hospice care. In the United States, Medicare, Medicaid, and most managed health care and private insurance plans cover hospice care.
What Is Hospice?
Hospice is a humane and compassionate way to deliver health care and supportive services to patients and their families during the final weeks of life. Modern hospice care started, in part, as a reaction to the increasing use of technology to extend life and the increasing expectation that death would occur in an unsympathetic, unsupportive hospital. The picture was one of strangers in attendance and no choice about the medical procedures being performed. People longed for idealized earlier scenes of peace and dignity where the dying person is pain free and surrounded by caring family.
During the 1960s, Cicely Saunders, a British physician, began the modern hospice movement by bringing together scientific research with holistic care of the mind and spirit. Saunders proposed standards that still guide care in the more than 2,000 hospices in the United States and hospice/palliative care units in Canada. Hospice affirms the rights of the patient/family unit to control the final stages of life. The terminally ill person's own preferences and lifestyle are taken into account in the hospice plan. The focus changes to caring when a life-limiting illness no longer responds to cure-oriented treatments. Hospice is intended to help make the most of the final months of life by providing emotional and spiritual support along with pain and symptom control.
Hospice care is provided by a team. Included in the team are the patient, the family, and trained volunteers, as well as the usual health care providers—nurses, home health aides, social workers, therapists, counselors, and physicians. The physician may be the patient's own physician or one who is specially trained in palliative (comfort) care. Each member of the team brings specific knowledge of terminal illness to the holistic care of the patient.
Volunteers provide significant services by offering support to patient and families, assisting with child care, and working with professional staff on bereavement support programs. Volunteer activities (such as transportation, shopping, and visiting) offer relief, referred to as respite care, to the care-giver from the work as well as time for self-care. The volunteers represent the wider community support for the patient in tangible ways.
One of the guiding principles for hospice is that patients, family, and staff all have legitimate needs and interests. The organization provides a mutual support network to discuss experiences and feelings engendered by emotionally charged care situations.
Care based on hospice principles can be provided in all of the settings where people die. Most people choose to die at home or in a relative's home with the help of hospice home health agencies. This choice is limited by the availability and abilities of caregivers, the technology that is needed, and the resources that are available in the community. Care is structured to keep patient and families together in the least restrictive environment possible. Other settings devoted to managing end-of-life care include freestanding inpatient hospices, nursing homes, and hospitals.
The hospice team coordinates a plan of care structured for just one person: the patient. A wide range of services may be provided, including nursing care, medical social services, physician services, spiritual support and counseling, home care aide and homemaker services, continuous care in the home, trained volunteer support service, physical, occupational, and speech therapy, twentyfour-hour on-call availability, hospice inpatient care, respite care, and bereavement support. In the United States Medicare, Medicaid, and most private insurance plans pay for much of this care. If insurance coverage is not available or is insufficient, most hospices provide services by relying on grants and community support through fundraising activities.
Health care expenditures are highest during the last month of life. Hospice is a cost-effective approach to end-of-life care. A 1995 comparison of average charges for a Medicare patient, prepared for the National Hospice Organization (NHO), indicated costs of $2,177 per day for hospital inpatient care, $482 per day for skilled nursing facility care, and $113 per day for hospice care.
While cost savings with hospice care account for governmental and third-party payers' interest, it is public support that drives the success and growth of hospice care availability. Much of the public wants to ensure that patient's wishes are enforced and that the patient is able to choose desired types of services.
Making the Decision to Receive Hospice Care
Even though there has been a significant death education movement in the United States and internationally since the 1960s, most Americans are still unwilling to discuss end-of-life care with the terminally ill. While the living will and advanced directives documents have been available since the late 1960s, only a quarter of Americans have put into writing the care they want at the end of life. Discussions with family about preferences for treatment continue to be avoided until a crisis occurs.
The first step is to explore one's own feelings about the end of life. This might best be accomplished through the answering of a series of questions, such as: What would you like the last three days of your life to be like? Where will you be? Who will be with you? Who will give you emotional and spiritual support? Do you have cultural and family traditions that will affect the care you wish to receive? Who would you like to have fixing your food? Would you like family to provide personal care, or someone who is trained for that care? Do you want everything done to keep you alive, such as cardiopulmonary resuscitation, breathing machines, and feeding tubes? Do you want to be alert and able to talk with your family or would you rather be unaware of the nearness of your death? If you were not able to make decisions for yourself, who would you like to have making those decisions for you?
The next steps include learning about the options available in the community and putting one's wishes in the form of advanced directives and a medical power of attorney. Discussions with family, doctor, and attorney can help make educated decisions and can also free loved ones from the anxiety and uncertainty of not knowing one's wishes and options.
When to Make the Hospice Care Decision
Ideally, the decision to enter hospice care is made when the patient and family decide that remembering, sharing, and bringing closure to life is more important than persisting in unpleasant and futile treatments to prolong life. In hospice care, the patient and family are able to focus on management of pain and other symptoms and to find time to address emotional and spiritual issues. Unfortunately it is very difficult for patients and doctors to identify the end of the fight for cure and the beginning of the need for palliative hospice care.
As they reported in 2000, Nicholas A. Christakis and Elizabeth Lamont asked doctors to estimate their patients' length of life. The doctors predicted accurately within one month of the actual death for only 42 percent of the patients. Most (46%) of the time the doctors overestimated the length of time left to the patient. Although there are variations depending on patient diagnosis, the average survival after enrollment in hospice is approximately one month to six weeks. Many of the patients die within seven days of enrollment. Hospice workers feel that earlier recognition of the need for palliative care would allow both patient and family more time to address end-of-life issues. Cultural, emotional, and socioeconomic factors all affect the accuracy of prognosis and the readiness for hospice care.
Ultimately the decision is a joint one, made between the patient/family and the doctor. Doctors certify that patients are terminally ill and probably have less than six months to live. Patients certify that they wish to enter a program that provides care, but that they no longer seek to cure illness. This is an emotional turning point that is difficult for all involved. The decision to enter hospice care should be an affirmative choice to live life to its fullest, supported by a comprehensive program of medical care. It should not be viewed as a failure for the doctor, the patient, or the family.
Once the decision is made, health care personnel can assist in identifying the resources available in the community. Questions about accreditation and licensure, available services, eligibility criteria, costs, payment procedures, and employee job descriptions may assist with the choice. Hospices may be freestanding or have close relationships with hospitals, skilled nursing facilities, or home health agencies. Hospices may be for-profit or non-profit agencies. References from hospital or community agency professionals may guide the choice. The final decision may be made in consultation with the hospice nurse in an evaluation interview. A key question is whether the philosophy and standards of the hospice are congruent with the needs and desires of the patient and family.
What to Expect from Hospice Care
Hospice care combines medical knowledge and research with a reverence for life. The philosophy emphasizes that appropriate care can allow the patient and family to live as fully and comfortably as possible with meaning and dignity. This was epitomized by an incident observed at St. Christopher's Hospice in England many years ago. An American nurse visiting this pioneering hospice noticed that none of the patients had intravenous fluids hanging by the bedside. Because almost every patient in the typical oncology ward at that time had continuous intravenous fluids, she asked Cicely Saunders, the pioneering hospice physician, about the lack at St. Christopher's. Saunders reply was, "Isn't it so much nicer to share a cup of tea?" The nurse noted that no patients seemed dehydrated and that the staff did indeed share a cup of tea with the patients.
The hospice patient and family should expect a professional nurse or social worker to develop a plan for care. Consideration of the needs and wishes of the patient and family is uppermost as decisions are made. Palliation, or remission of pain and other troubling symptoms, was the subject of research leading to great improvement in care during the latter part of the twentieth century. The hospice physician and patient's doctor are consulted to assure that pain and symptom management orders are in place. Freedom from pain and from fear of pain allow the patient to fully participate in the business of living.
In addition to pain management, hospice provides social, psychological, emotional, and spiritual support. The patient and family should feel safe and secure knowing that they can depend on caregivers to communicate honestly, discuss concerns, answer questions, and function effectively. Patients and family need the opportunity and privacy to say goodbye.
Hospice care is intended to support family members, especially those who are the patient's caregivers and information about what is happening to the terminally ill person is given. Instruction about how to care for the person can be very reassuring to the caregivers. Assistance with household tasks such as meal preparation, shopping, and transportation may be needed. Sometimes what is needed is a good night's sleep or time for one's own health care appointment. This respite from duties can make it possible to continue caring. Some hospices provide inpatient respite services where the patient is cared for in a skilled nursing facility or hospital for a few days to allow the care-giver time to rest. Patients appreciate knowing that the burden of their care can be shared.
The birth or wedding that goes as it should seems to foretell a life or marriage that will go well. The same is true of a good death. Family members survive and grow from the experience. When the death is isolated and filled with pain, the memories that stay behind can be difficult. Hospice is committed to making the end of life a time of growth.
See also: Good Death, the; Hospice Around the World; Pain and Pain Managment; Saunders, Cicely; Symptoms and Symptom Management
Byock, Ira. Dying Well: The Prospect for Growth at the End of Life. New York: Riverhead Books, 1997.
Christakis, Nicholas A., and Jose J. Escarce. "Survival of Medicare Patients after Enrollment in Hospice Programs." New England Journal of Medicine 334 (1996):172–178.
Christakis, Nicholas A., and Elizabeth Lamont. "Extent and Determinants of Error in Doctor's Prognoses in Terminally Ill Patients: Prospective Cohort Study." British Medical Journal 320 (2000):469–473.
Enck, Robert. The Medical Care of Terminally Ill Patients. Baltimore, MD: Johns Hopkins University Press, 1994.
Kastenbaum, Robert. Death, Society, and Human Experience. Boston: Allyn & Bacon, 2001.
National Hospice Organization. "An Analysis of the Cost Savings of the Medicare Hospice Benefit." Prepared by Lewin-VHI, 1995.
Saunders, Cicely. The Care of the Dying. London: Macmillan, 1959.
"Facts and Figures on Hospice Care in America." In the National Hospice and Palliative Care Organization [web site]. Available from www.nhpco.org/public/articles/FactsFigures110801.pdf.
Haupt, Barbara J. "An Overview of Home Health and Hospice Patients: 1996 National Home and Hospice Care Survey." Hyattsville, MD: National Center for Health Statistics. Available from www.cdc.gov/nchs/data/ad/ad297.pdf.
AIDS (acquired immunodeficiency syndrome) is defined as the stage of infection with HIV-1, or HIV (human immunodeficiency virus), in which an infected person's immune system has become so weak that he or she is at risk of developing other infections or cancers (or has already developed them) that can potentially lead to death. Though all people with AIDS are infected with HIV-1, not all people with HIV-1 infection have AIDS, nor will all of them develop AIDS.
The cause of AIDS is human immunodeficiency virus-1 (HIV-1), a member of a group of viruses called retroviruses. Retroviruses are enveloped ribonucleic acid (RNA) viruses that contain an enzyme (reverse transcriptase) that will transcribe viral RNA to deoxyribonucleic acid (DNA). In the case of HIV-1, this DNA (now called a DNA provirus) is then integrated into the infected person's DNA. When the infected person's DNA is then transcribed, or read by the cell's molecular machinery, the proviral DNA is also read, leading to the creation of new virus and release from the infected cell.
The pathogenesis of HIV-1 infection is complex. HIV-1 binds to cells that have specific types of molecular receptors on their surface, such as CD4 and chemokine receptors. Cells that have these receptors include CD4 lymphocytes, macrophages, and microglial cells in the brain. CD4 lymphocytes are a kind of helper T cell . Macrophages are immune cells that consume infected cells, and microglial cells perform certain immune functions in the brain. After the virus binds and enters the cell, it will replicate as discussed above. In the course of a day, as many as ten billion virus particles can be produced in an infected person.
CD4 lymphocytes are one of the main targets of HIV-1. These cells are essential in the functioning of the immune system. The CD4 lymphocytes are destroyed by direct viral killing, by other lymphocytes that destroy HIV-infected cells, and probably by other mechanisms. As the CD4 lymphocytes become depleted, the immune system's ability to fight off infections and certain types of cancers is lost. When the loss becomes severe enough, these infections and cancers can occur, and may kill the HIV-infected person. At this stage of depleted CD4 cells, medical professionals say that the infected person has full-blown AIDS.
The epidemiology of HIV infection/AIDS has changed over the years. When the disease was first recognized in the early 1980s, men who had sex with men were by far the largest affected risk group, followed by intravenous drug users who were sharing needles, individuals who received HIV-infected blood, and hemophiliacs who received infected clotting factors. Women who had sexual contact with infected men were recognized as being at high risk of contracting HIV, and if they were pregnant, passing it on to their unborn children.
Though this disease was first recognized in the United States, cases soon appeared in many countries of the world. Particularly hard hit were countries in sub-Saharan Africa, the Caribbean, and Asia. At the turn of the twenty-first century, it is estimated that more than forty million people are infected worldwide and as many as one million in the United States alone.
Transmission of HIV-1 occurs through infected bodily fluids. Sexual contact by far is the most common mode of transmitting HIV. Anal sex is the most efficient sexual manner of transmitting the virus. Vaginal intercourse poses the next highest risk, but more to the female than the male. In other words, it is much easier for an infected man to infect a woman through penile-vaginal intercourse than the other way around, especially if the man is circumcised and has no sores or ulcers on his penis. Since HIV is a blood-borne infection, those individuals engaging in intravenous drug use and sharing needles can easily transmit the virus in this manner. Prior to testing for the virus in the blood supply, there was a risk of acquiring HIV from transfusion of blood or a blood product, but this risk is now extremely small. Vertical transmission, or transmission from mother to child during pregnancy, occurs in about one-third of HIV-infected pregnant women who are not treated with anti-HIV medications.
Prevention of HIV transmission is both a behavioral and medical problem. Abstinence from sexual behavior is promoted as the only sure way of preventing transmission of HIV. Though this of course is true, premarital and extramarital sexual behavior is common in most societies. Condoms provide an effective barrier to sexual transmission. Social, religious, political, and cultural issues, however, enter into the education of youth on the use of condoms, and lead to controversies over education about sexual behavior in general. With as many as one-third or more of HIV infections occurring during adolescence, aggressive and honest educational approaches must be implemented. One can only make an informed decision about one's behavior if one understands the consequences and has knowledge of how to prevent transmission.
Beyond all of this, there are the medical areas of transmission prevention. As mentioned above, HIV-infected pregnant women who are treated with anti-HIV medications can reduce their risk of transmitting the virus to their baby. Health care workers who are stuck with needles contaminated with blood from HIV-positive patients can reduce their risk of infection by using anti-HIV medications. Medical studies in the early twenty-first century are looking at the possibility of reducing the risk of HIV transmission following a sexual contact by treating the uninfected contact with anti-HIV medications. Vaccines against HIV are being researched in many parts of the world, but as of yet, have not been shown to be protective.
Treatment of HIV/AIDS is both complicated and expensive. The medications that are available inhibit the reverse transcriptase enzyme, and inhibit an enzyme that helps the virus mature into one that can infect other cells. By using a combination of at least three different medications that are active at these various sites, one can clear the blood stream completely of virus. Once this occurs, the patient's immune system often improves, and in some cases, returns to normal. If the patient takes medications as directed and the virus stays suppressed, there is a chance that the patient may never become ill. The virus, however, is still present in the lymph nodes and probably other tissues. If the patient stops taking medications or takes them erratically, the virus will return to the bloodstream. Once the virus is actively produced again, there is a high probability that it will mutate to a form resistant to the medications that the patient was previously on. When this occurs, especially if the patient has been on more than one regimen of medicines, a virus resistant to all available medications can be selected for. At this point, little else can be done. One major concern about these individuals is that if they are still sexually active or continue to share needles, they will transmit resistant virus. This is being documented more frequently.
New medications are being studied that may be able to overcome this resistance problem by attacking different sites of viral production, or those that are not affected by mutations in the resistant virus. The problems here include the possibility that the patient could die before the new medicines are available; that if the patient is still alive, he or she will be unable to tolerate the side effects of the new medicines; and, finally, that the patient will be unable to afford the medicines. Anti-HIV or anti-retroviral medications are very expensive, costing over $10,000 per year in the United States. This, plus the costs of blood tests and doctor visits, makes treatment beyond the means of most of the infected people in the world.
HIV/AIDS is and will continue to be one of the greatest medical challenges medical professionals have ever faced. Prevention and education are the only means that public health professionals currently have to stem the tide of this ever-growing epidemic .
see also Birth Control; Retrovirus; Reverse Transcriptase; Sexually Transmitted Diseases; T Cells; Viral Diseases
Harold P. Katner
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Jasny, Barbara, ed. "AIDS: The Unanswered Questions." Science (special AIDS issue), 260 (28 May 1993): 1253–1293.
Mandell, G. L., J. E. Bennett, and R. Dolin, eds. Principles and Practice of Infectious Diseases, 5th ed. Philadelphia, PA: Churchill Livingstone, 2000.
Sande, M. A., and P. A. Volberding, eds. The Medical Management of AIDS, 6th ed. Philadelphia, PA: W. B. Saunders, Co., 1999.
World Health Organization. "WHO Global AIDS Statistics." AIDS Care 2000 12, no. 798.