Q. What is hospice?
A. Hospice is a concept of health care that provides holistic services for the physical, emotional, and spiritual needs of terminally ill patients and their families. The goal of hospice is not to cure illness nor hasten death, but to ease a patient's passage from life. The hospice philosophy of care has found broad acceptance in the United States during the past twenty years.
Hospice care is designed to alleviate pain and control the symptoms of disease with expertise and compassion. In addition to physical care, hospice provides spiritual, social, and emotional support.
Individuals today are confronted with difficult choices about health care, particularly at the end of life. Questions of cost, availability, quality, and patient autonomy are debated by families, heath care providers, and politicians. For an increasing number of patients and families, hospice is an enlightened development in medicine.
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Q. What is End of Life Care?
A. The term “end of life care” includes four ways to address important needs in our life. Picture an umbrella. Its arching shelter is “end of life care”, and gathered under it are Advance Care Planning, Palliative Care, Hospice Care, and Bereavement Care.
- Advanced Care Planning is a need all of us will have at some point in our adult lives — whether we are healthy or not, and with or without the responsibility of caring for someone else. In particular, members of the “sandwich” or caregiver generation (those born between 1950 and 1975) will turn to advance care planning as they consider care for parents, children and themselves.
As you develop an advance care plan, you will explore your options for care, reflect on those options and your values, talk with your loved ones, and finally, record your wishes. Your plan may change over time, as your situation or wishes change.
Options for care include Palliative and Hospice Care, which are philosophies, or concepts of care. Neither is limited to a location or practice, and both address the many ways illness can affect a person´s life. Both are available to people of all ages and illnesses.
- Palliative Care is the treatment of a patient´s physical, emotional, social and spiritual needs. It seeks to improve quality of life for a person with a serious or life-threatening medical condition, and for his or her family.
- Hospice Care can be an extension of Palliative Care — it becomes a matter for consideration after the diagnosis of a life-limiting illness. It is provided to family members and caregivers, as well as to the patient. Hospice care offers a team approach to medical, nursing, social and spiritual care. It is designed to give relief of symptoms and to help make the patient´s remaining time meaningful.
- Bereavement Care is the final component of “end of life care.” Bereavement counseling is offered to survivors by the hospice team (and other sources) for up to a year after the death of their loved one.
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Q. Does hospice only take care of cancer patients?
A. No. Hospice serves those who are at the end-stage (having a life expectancy of six months or less) of any disease, although many hospice patients do have cancer. As health care changes and chronic diseases increase, hospice serves a widening range of patients. Other people commonly served by hospice include those with diseases of the heart and lungs, AIDS, ALS (Lou Gehrig´s disease) and Alzheimer´s.
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Q. How does hospice work?
A. Once a patient selects hospice care, a hospice team is assembled. The patient, family, and hospice team develop a comprehensive plan that supports the patient´s decision to remain at home. Each hospice patient usually has a “primary caregiver.” This caregiver is often the patient's spouse, partner, or parent, although any family member or friend can fill this role. Members of the hospice team visit the patient and family regularly to provide medical and social services and to support the caregiver.
In a 1996 Gallup poll, nine out of ten people surveyed said that, if given six months to live, they would choose to be cared for and die in their own homes or in those of family members. Hospice care is available as well in many nursing and rest homes and assisted living facilities. Some hospices also have in-patient facilities where patients with acute medical needs are cared for by hospice trained staff and volunteers.
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Q. Who is the hospice “team”?
A. The team assembled when a patient selects hospice care includes doctors, nurses, nursing assistants, social workers, counselors, spiritual caregivers, and volunteers. This team helps coordinate medications, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.
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Q. When is it time to refer a patient to hospice and who does it?
A. Any time during a life-limiting illness, it is appropriate to discuss all of a patient´s care options, including hospice. (People with life-limiting illnesses may have months versus years to live.) By law, the decision belongs to the patient. Many people are uncomfortable with the idea of stopping an all-out effort to “beat” a disease. The hospice team is sensitive to these concerns and is always available to discuss them with the patient, family, and physicians.
Some physicians may feel uncomfortable bringing up hospice care, so a patient or caregiver should feel free to bring up the topic. In addition to physicians, a patient, friend, family member, or pastor may make a hospice referral. An early referral enables the hospice team to develop the relationships that meet the needs of the patient and caregivers. If the patient continues to meet hospice criteria, services may continue longer than six months.
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Q. What does the hospice admission process involve?
A. One of the first things hospice will do is contact the patient's physician to make sure he or she agrees that hospice care is appropriate for the patient at this time. The hospice care goals and available services will be reviewed carefully with the patient and caregivers to make sure they are understood. The patient will be asked to sign consent and insurance forms similar to those signed when entering a hospital.
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Q. Does hospice do anything to make death come sooner?
A. Hospice does nothing to hasten or unduly prolong the dying process. Hospice provides a presence and specialized knowledge during this particularly difficult time. Hospice services are designed to bring comfort, to control pain and other symptoms, and to address the emotional, social, and spiritual needs of both the patient and his or her loved ones.
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Q. How difficult is it to care for a loved one at home?
A. While it is never easy, some caregivers have said it was an especially rewarding period of their lives, a time when they could express love and caring in a personal and meaningful way. One of the first things hospice will do is work with the patient and caregivers to prepare an individualized care plan. The hospice team works closely with the patient and caregivers to address their needs. The hospice team visits regularly and is always accessible to answer questions and provide support. While friends and family give most of the care, hospices do have volunteers to assist with errands and to provide an occasional break.
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Q. Is the home the only place hospice care can be delivered?
A. No. Although most hospice services are delivered in a private residence, some patients live in nursing homes, assisted living facilities, or hospice centers.
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Q. How does hospice manage pain?
A. Hospice has expertise in managing pain. Hospice staffs are up-to-date on the latest medications and approaches for pain and symptom relief; they also recognize that emotional and spiritual pain is just as real. The hospice team is uniquely skilled at addressing the needs of patients and their caregivers during this difficult period. With hospice care, many patients can be as alert and comfortable as they desire.
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Q. How is hospice care funded?
A. Hospice coverage can be provided through Medicare and Medicaid in both North and South Carolina, as well as through most private insurance plans. If coverage is not available, hospice will help investigate other resources the family may not be aware of. If necessary, most hospices provide care by using money raised in their community from memorials, special events, foundation gifts, and other contributions.
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Q. Hospice provides bereavement care to the family. What does that mean?
A. Bereavement care refers to the organized program of grief support provided by a hospice to caregivers and families. Based on the needs of the families and caregivers, bereavement care might include individual counseling, support groups, or informational mailings. Family members also can call to request additional support any time during the year following the death of their loved one. In addition, many hospices sponsor bereavement functions and support groups for the community.
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Q. What is the history of hospice?
A. Hospices were not always devoted solely to the care of the dying. In fact the word “hospice” (derived from the same root as “hospitality”) referred in medieval Europe to way stations where weary travelers could rest, and the ill could recover or find a peaceful death. The modern hospice movement was begun by Dr. Cicely Saunders in London in 1967. Patients were provided with the best medication possible to control their pain so they and their families could address the emotional and spiritual challenges they faced. In 1968 Florence Wald, then dean of the nursing school at Yale, brought the idea of hospice to the United States.
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Q. What impact has hospice had in the United States?
A. Hospices across the US care for nearly twenty percent of all dying patients. Rather than attempt to keep a patient alive at all costs, hospice offers a humane alternative to aggressive medical treatment for the terminally ill. In the United States, over 2,800 hospices cared for more than 540,000 patients in 1998. Today hospice employs more than 25,000 paid professionals, and approximately 96,000 volunteers contribute more than five million hours of services. Hospice care is now a covered benefit under most public and private health plans, including Medicare. In fact, a 1995 study shows that for every dollar spent on hospice by Medicare, $1.52 was saved in government Medicare expenditures.
“While hope for a miracle cure may not be evident in hospice philosophy,” states Jay Mahoney, former president of the National Hospice Foundation, “hospice care can be an extraordinary expression of hope and individual courage.”This philosophy of hope is at the heart of the hospice movement.
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