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
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.
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