Hospice is a philosophy as much as it is a concept. It is a fundamental belief in a peaceful and rational end of life directed by the person and not by healthcare or payment systems, or laws. Hospice, as a concept, is the treatment for pain and suffering, with the recognition and acceptance that cure is not possible. Multidisciplinary teams, often including volunteers, join patients, their families, and friends in creating a peaceful end-of-life experience. Medicare and Medicaid benefits are now available for hospice care, making it a more viable choice for many. In 2007, the number of Medicare-or Medicaid-approved hospice facilities in the nation totaled 3,078. These facilities provided services to more than 1.3 million individuals and their families.
In ancient times, “hospitium” was a concept that dictated that travelers, passing through, were given hospitality, including clothing and entertainment in private homes. Hosts and travelers knew each other or were part of a family known to the host. More public hospitality, perhaps between two cities rather than families, was seen in ancient Roman times. During the Middle Ages across Europe, travelers might find hospitium in hospitia, buildings attached to monasteries. Hospitia came to serve travelers making holy pilgrimages and the sick. Essentially, the hospitia were guesthouses offering shelter, food, and comfort for the weary. As in the past, the modern-day hospice provides care and comfort to the weary traveler. Only today, the journey is to the end of life.
Modern-day hospice began in England during the mid-1960s, when Dame Cicely Saunders, a physician, established St. Christopher's Hospice in London. It was a facility characterized by light, gardens, small groupings of patients, and areas for families to gather. The care received in this environment translated the philosophy into modern practice. Florence S. Wald, the dean of the Yale School of Nursing, opened the first hospice in the United States in Connecticut in 1974.
The word hospice originates from the Latin hospitium, meaning a guesthouse. This origin perpetuates the confusion that hospice is always a unique and specific place. While there are facilities that are either partially or entirely used for hospice care, the place is not the most important component. The essential components of hospice as a philosophy are the unwavering commitment to relief of pain and suffering when a person is diagnosed with a life-limiting disease, an unyielding belief in the irreducible wholeness of personhood that addresses the meaning of life and death, the quality of life and death, an understanding of spirituality, and a steadfast dedication to the right to make choices and decisions about one's own care at the end of life.
Hospice is not about suicide, euthanasia, or absence of care; nor is it about the prolonging of life or the quickening of death. It is about providing comfort and palliative care at the end of life, when the treatment of a disease is no longer appropriate or possible. Palliative care is defined as the relief of pain, suffering, and stress caused by illness and disease. Services are directed at both the individual and the family. The individual is assured that relief of pain and suffering are paramount in all endeavors. The family is comforted by the attention to the relief of the pain and suffering and supported through the grieving process that accompanies a rational and dignified end of life.
The overarching goal of hospice is to ensure comfort and dignity to the dying individual and the family as a unit. As a philosophy of care, it can be implemented in a variety of settings. Individuals can receive hospice services in their own homes, a nursing home or other residential facility, a hospital, or a freestanding hospice facility. Most recipients obtain care in their own home or in nursing homes. The care team consists of family, physician, registered nurse, patient-care assistant, chaplain, social worker, psychologist, dietitian, vol un teer, and bereavement counselors for the loved ones.
An individual's family or friends may refer the individual to a hospice, but a physician must document the diagnosis and life expectancy of the individual. Persons with less than 6 months to live are eligible for hospice benefits through Medicare, and Medicaid in 43 states. Many private health insurers also offer hospice coverage. Hospice recipients, with physician input, may receive more than 6 months of hospice services when they live beyond the original life expectancy.
In terms of national statistics (2006), the average length of service in a hospice is 59 days, and the median length of service is 21 days. Most recipients obtain care in their own homes (47%) or in nursing homes (22%). Most of those in hospice have a cancer diagnosis (44%), followed by heart disease (12%) and those with dementia (10%). Other medical conditions include, but are not limited to, lung, liver, or kidney disease, HIV/AIDS, stroke, or motor neuron diseases. The majority (81%) of hospice recipients are Caucasians, followed by African Americans (8%), and Asians, Hawaiians, or Pacific Islanders (2%). Most hospice recipients are 65 years of age or older (81%). Specifically, 65- to 74-year-olds account for 17% of the total admissions, 75- to 84-year-olds for 31%, and 85-year-olds and older for 33%.
Prior to a hospice admission, a meeting occurs with the individual, the physician, the hospice representative, and the family (as appropriate). In this meeting, discussions about the diagnosis, goals of care, and types of support occur. Specifically, hospice focuses on the physical, psychosocial, and spiritual needs of its recipients. Emphasis is placed on the relief of symptoms (pain, shortness of breath, and muscle spasm), thereby promoting comfort for the individual. The individual, as long as possible, directs the care provided; and when no longer able to direct this care, his or her wishes are followed until death occurs.
If individuals move into a facility wherein hospice, as a philosophy of care, is practiced, they are encouraged to create a home environment with their own furniture, linen, photographs, and music. Individuals determine their visitors and visiting hours and use their own clothing, and family or friends are encouraged to prepare food, especially the patient's favorite foods. The goal of creating a hospice facility is to make the environment like an individual's home while providing the expert care needed to alleviate pain and suffering.
After death occurs, hospice provides loved ones with bereavement counseling. This has a variety of forms, from personal telephone calls to letters, support groups, and individual counseling, to annual services that honor all who have died in a specific hospice.
The Hospice Association of America (HAA), an affiliate of the National Association for Home Care and Hospice (NAHC), developed a Hospice Patient's Bill of Rights that is based on dignity and respect for all recipients; the ability to make decisions regarding care, privacy, and confidentiality; knowledge of financial charges and payments; and the right to the highest quality of care. These rights are embraced widely by the nation's hospices.
As the hospice philosophy and practices gained acceptance, there emerged a need to have a resource to guide the family and caregivers when individuals were no longer able to speak for themselves or to make decisions. Thus, advanced directives were created. By definition, an advanced directive is a statement of what healthcare an individual wishes to receive or not receive when that person no longer possesses the capacity to make a healthcare decision and/or is not able personally to address the issue. In 1990, the U.S. Congress passed legislation that created the Patient Self Determination Act. This act mandates that healthcare providers and healthcare agencies ensure that patients have information and education about advanced directives. Furthermore, any agency that accepts federal funds (i.e., Medicare and Medicaid) for care provided must abide by an individual's advanced directive. All 50 states recognize the legality of advanced directives. However, each state uses its own version, but all are essentially the same.
An advance directive is created before the need arises. A living will and a durable power of attorney (for healthcare, as separate from all other arenas) are two major components. Individuals create living wills to address the type and amount of healthcare to be provided at the end of life and/or when they cannot communicate their wishes, such as in a healthcare emergency. A durable power of attorney is another document that identifies the person who the patient authorizes to make decisions when he or she is unable, for example, to execute the terms of the living will. Each state has specific regulations and laws as to what a durable power of attorney can and cannot authorize with regard to an individual's healthcare, but the key is that a specific person is designated by the individual in advance of the need. The individual makes the decision to appoint the said individual freely and without any type of coercion. The person so designated speaks on the individual's behalf when he or she is no longer able to, advocates the plans the individual made and documented in the living will, and is the decision maker when healthcare consent is required.
While advanced directives are legal documents, there is no requirement that attorneys create them. There are no specific forms or formats required, although forms are readily available. An adult-age individual with decision-making capacity may create and/or change a living will at any time and designate a person who will have durable power of attorney in healthcare matters. In most states, the advance directives need to be witnessed by two parties. The signatures affirm that the person signing the living will is indeed whoever it states it is, that this person is of sound mind at the time of the signature, and that the documents are signed freely. Both the living will and the durable power of attorney documents should be shared with the individual's loved ones and healthcare providers so that they are available when the need arises.
Advance directives are the legal system's way of assisting an individual in determining the quality of life at the end of life. Like hospice, advance directives neither prolong life nor hasten death. They provide healthcare providers with the treatment wishes of individuals at the end of life.
In an era of growing consumerism in the United States, individuals are increasingly educated about their bodies and their medical conditions. Most individuals want to be fully informed and actively involved in decisions about and for them. To many, quality of care is as important, if not more important, than the quantity of care. At the same time, pain and suffering are unacceptable, and all efforts must be made to alleviate them. Additionally, death and conversations about death and dying often are feared and delayed. Discussions typically occur only when faced with major decisions and in a highly emotional context.
Hospice as a philosophy encourages quality of life at the end of life. It promotes neither artificial prolongation of life nor artificial hastening of death. Hospice is about determination and choice, quality of life and not quantity, advocacy for self and others, relief of pain and suffering at the direction of the individual, and a rational and peaceful end to life as we currently know it.
Cost of Healthcare, Home Health Care, Long-Term Care, Medicaid, Medicare, Nursing Homes, Pain, Quality of Healthcare
American Academy of Hospice and Palliative Medicine (AAHPM): http://www.aahpm.org
Hospice Foundation of America: http://www.hospicefoundation.org
National Association for Home Care and Hospice (NAHC): http://www.nahc.org
National Hospice and Palliative Care Organization (NHPCO): http://www.nhpco.org
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