In the United States, hospice care is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual, or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.
Under hospice, medical and social services are supplied to patients and their families by an interdisciplinary team of professional providers and volunteers, who take a patient-directed approach to managing illness. Generally, treatment is not diagnostic or curative, although the patient may choose some treatment options intended to prolong life, such as CPR. Most hospice services are covered by Medicare or other providers, and many hospices can provide access to charitable resources for patients lacking such coverage.
With practices largely defined by the Medicare system, a social insurance program in the United States, and other health insurance providers, hospice care is made available in the United States to patients of any age with any terminal prognosis who are medically certified to have less than six months to live. In 2007, hospice treatment was used by 1.4 million people in the United States. More than one-third of dying Americans use the service. Common misperceptions regarding the length of time a patient may receive hospice care and the kinds of illnesses covered may result in hospice being underutilized. Although most hospice patients are in treatment for less than thirty days, and many for less than one week, hospice care may be authorized for more than six months given a patient's condition.
Care may be provided in a patient's home or in a designated facility, such as a nursing home, hospital unit or freestanding hospice, with level of care and sometimes location based upon frequent evaluation of the patient's needs. The four primary levels of care provided by hospice are routine home care, continuous care, general inpatient, and respite care. Patients undergoing hospice treatment may be discharged for a number of reasons, including improvement of their condition and refusal to cooperate with providers, but may return to hospice care as their circumstances change. Providers are required by Medicare to provide to patients notice of pending discharge, which they may appeal.
In other countries, there may not be the same distinctions made between care of those with terminal illnesses and palliative care in a more general setting. In such countries, the term hospice is more likely to refer to a particular type of institution, rather than specifically to care in the final months or weeks of life. End-of-life care is more likely to be included in the general term "palliative care".
History and statistics The first hospices are believed to have originated in the 11th century, when for the first time the terminally ill were permitted into places dedicated to treatment by Crusaders. In the early 14th century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes, meant to provide refuge for travelers and care for the ill and dying.Connor, 5. The hospice practice languished until revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul and, later, by the Irish Sisters of Charity, who opened St Joseph's Hospice in London, England in 1902. In the 1950s at St. Joseph's, Cicely Saunders developed many of the foundational principles of modern hospice care. She later founded St Christopher's Hospice in London.
In 1971, Hospice, Inc. was founded in the United States, the first organization to introduce the principles of modern hospice care to that country, where medical care had focused on fighting illness through hospital stays.Connor, 6. In 1974, Florence Wald, along with two pediatricians and a chaplain, established the first hospice in the United States: Connecticut Hospice, located in Branford, CT. Throughout the 1970s, the philosophies of hospice were being implemented throughout the United States. The hospice movement in the United States became distinguished from that in Britain, according to Stephen Connor's Hospice: Practice, Pitfalls and Promise, by "a greater emphasis on use of volunteers and more focus on psychological preparation for death".Connor, 5–6. In 1982 Medicare, a social insurance program in the United States, added hospice services to its coverage. On September 13, 1982, by request of the senate, US President Ronald Reagan proclaimed the week of November 7 through November 14, 1982, as National Hospice Week.
Since then, the hospice industry has rapidly expanded. This growth has accompanied the AIDS epidemic and the aging of the population, with related illnesses. By 1995, hospices were a $2.8 billion industry, with $1.9 billion from Medicare alone funding patients in 1,857 hospice programs with Medicare certification. In that year, 72% of hospice providers were non-profit. By 1998, there were 3,200 hospices either in operation or under development throughout the United States and Puerto Rico, according to the National Hospice and Palliative Care Organization (NHPCO). According to 2007's Last Rights: Rescuing the End of Life from the Medical System, hospice sites are expanding at a national rate of about 3.5% per year. In 2007, 1.4 million people in the United States used hospice, with more than one-third of dying Americans using the service, approximately 39%. In 2008, Medicare alone, which pays for 80% of hospice treatment, paid $10 billion to the 4,000 Medicare-certified providers in the United States. According to the 2017 National Hospice and Palliative Care Organizations Facts and Figures, 1.49 million Medicare beneficiaries were enrolled in hospice care for one day or more, which is 4.5% increase from the prior year. Other statistics from the 2017 report are as follows:
48.2 percent of Medicare beneficiaries who died in 2017 were enrolled in hospice at the time of death. 40.5 percent of patients received care for 14 days or less, while those receiving care for more than 180 days accounted for 14.1 percent. At 98.2 percent, Routine Home Care accounts for the vast majority of days of care. $18.99 billion was spent on hospice care by Medicare in 2017, representing an increase of 6.3 percent. Since 2014, beneficiaries identified as Asian and Hispanic increased by 32 percent and 21 percent respectively.
As the hospice industry has expanded, so has the concept of hospice care. In 2003 the first US children's hospice facility, the George Mark Children's House Hospice, opened in San Francisco. In February 2009, Buffalo News reported that the balance of non-profit and for-profit hospices was shifting, with the latter as "the fastest-growing slice of the industry." A 2022 article in The New Yorker, argued that hospice had become a $22 billion industry "plagued by exploitation".
Philosophy and practices The goal of hospice agencies in the United States is to provide comfort to the patient and heighten quality of life. How comfort is defined is up to the patient or, if the patient is incapacitated, the patient's family. This can mean freedom from physical, emotional, spiritual and/or social pain. Hospices typically do not perform treatments that are meant to diagnose or cure an illness,Old and Swagerty, 8. and they do not seek to hasten death or, primarily or unduly, to extend life.Plocher and Metzger, 122.This is an approach historically taken by hospice providers in England. Cf. While it is generally not required that patients sign "Do not resuscitate" (DNR) orders to be on hospice, some hospices require them as a condition of acceptance.
Many hospice patients, though not all, have made decisions against receiving CPR should their heart or breathing stop. If a patient does decide to request CPR, that service may not be provided by the hospice; the family may need to contact Emergency Medical Services to provide CPR. The principle of not extending life and withdrawing diagnostic or curative treatments is often the greatest barrier for patients in accepting hospice care. In some cases, medical professionals may feel conflict in attempting to provide it.
Some confusion still exists as to what treatments a patient may receive in hospice care. Hospices may provide treatments that have been traditionally regarded as curative, including radiation therapy or antibiotics, if these are administered to improve quality of life.Wilbur and Graber, 850. Determination of appropriate treatment is made by medical personnel on an individual basis.
Another aspect of the hospice philosophy is that the care is patient-centered, to treat the whole patient. Many healthcare agencies in the US market themselves as patient-centered; for hospice, this patient-directed care is integral and interwoven throughout the care which is provided.. Related Medicare regulations reflect this philosophy.
Popular media Hospice care in the United States was the subject of the Netflix 2018 Academy Award-nominated short documentary End Game, about terminally ill patients in a San Francisco hospital and Zen Hospice Project, featuring the work of palliative care physician BJ Miller and other palliative care clinicians. The film was executive produced by hospice and palliative care activist Shoshana R. Ungerleider.
Hospice demographic In order to qualify for hospice care, patients must have certification from two physicians that they have less than six months to live if their disease runs its natural course. Usually the patient's primary physician and the Hospice Medical Director provide this certification. Patients can and do stay on hospice longer than six months, and as long as the hospice team continues to certify with supporting evidence that the patient is terminal, insurance companies will usually continue to pay for hospice care.
Many physicians are slow to refer to hospice care, waiting until they are absolutely certain of a terminal prognosis. Some physicians believe that the patient must have a six-month prognosis or less to receive hospice care, while others are overly optimistic in their assessment of prognosis, presuming treatment will be more effective than it is. As a result, the majority of patients are referred to hospice in the very end-stages of their diseases, or choose that time to seek hospice care. The average length of stay in hospice before a patient dies was 26 days in 1994 and 19 days in 1998. Although the length of average stays has since increased, the term of care continues to be underused. In 2004 the average stay was 57 days and the median length was 22 days. 33% of hospice patients admitted in 2004 died within seven days of admission.
Such late admission is inconsistent with the process of hospice, which is to alleviate patient distress over a period of time, based on time for patients and family members to develop relationships with the hospice team.