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An assisted living residence or assisted living facility (ALF) is a housing facility for people with disabilities or for adults who cannot or who choose not to live independently.[1] The term is popular in the United States. Still, the setting is similar to a retirement home, in the sense that facilities provide a group living environment and typically cater to an older adult population. There is also Caribbean assisted living, which offers a similar service in a resort-like environment (somewhat like assisted vacationing). The expansion of assisted living has been the shift from "care as service" to "care as business" in the broader health care system predicted in 1982.[2] A consumer-driven industry, assisted living offers a wide range of options, levels of care, and diversity of services (Lockhart, 2009) and is subject to state rather than federal regulatory oversight.[3]
What "Assisted living" means depends on both the state and provider in question: variations in state regulatory definitions are significant and provider variables include everything from philosophy, geographic location and auspice, to organizational size and structure. Assisted living evolved from small "board and care" or "personal care" homes and offers a "social model" of care (compared to the medical model of a skilled nursing facility). The assisted living industry is a segment of the senior housing industry. Assisted living services can be delivered in stand-alone facilities or as part of a multi-level senior living community. The industry is fragmented and dominated by for-profit providers. In 2010, six of the seventy largest providers were non-profit, and none of the top twenty were non-profit (Martin, 2010). Information in this edit is from an article published in 2012 that reviewed the industry and reports results of a research study of assisted living facilities.[4]
In 2012, the U.S. Government estimated that there were 22,200 assisted living facilities in the U.S. (compared to 15,700 nursing homes) and that 713,300 people were residents of these facilities.[5] The number of assisted living facilities in the U.S. has increased dramatically since the early 2000s. In the U.S., ALFs can be owned by for-profit companies (publicly traded companies or limited liability companies [LLCs]), non-profit organizations, or governments.[6] These facilities typically provide supervision or assistance with activities of daily living (ADLs); coordination of services by outside health care providers; and monitoring of resident activities to help to ensure their health, safety, and well-being. Assistance often includes administering or supervising medication or personal care services. There has been controversy generated by reports of neglect, abuse, and mistreatment of residents at assisted living facilities in the U.S.
Canada has differences in how assisted living is understood from one province to the next. In most provinces, the phrase is understood as less independent than in the United States. People often require help with more than one of the activities of daily living or the more intensive ADLs like feeding or bathing. In the province of Alberta, "supportive living" is the distinct phrasing used for a type of care that is otherwise synonymous. The province's Supportive Living Accommodation Licensing Act is a comprehensive act with specific prescriptions governing care homes licensing, inspections, and more.[citation needed]
Within the United States assisted living spectrum, there is no nationally recognized definition of assisted living.[citation needed] Assisted living facilities are regulated and licensed at the US state level. These regulations include staffing, training, and quality and safety standards. This is differentiated from nursing homes, which are regulated on a federal level and are generally held to more stringent standards.[7] More than two-thirds of the states use the licensure term "assisted living." Other licensure terms used for this philosophy of care include residential care homes, assisted care living facilities, and personal care homes. Each state licensing agency has its definition of the term it uses to describe assisted living. Because the term assisted living has not been defined in some states, it is often a marketing term used by various senior living communities, licensed or unlicensed. Assisted living facilities in the United States had a national median monthly rate of $3,500.00 in 2014, a 1.45% increase over 2013 and a 4.29% increase over five years from 2009 to 2014.[citation needed]
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As widely varied as the state licensing and definitions are, so are the types of physical layouts of buildings in which assisted living services are provided. A resident can have an apartment, condo, private room, or shared room. Some facilities offer furnished rooms. All residents will have access to a kitchen which may be personal or shared depending on the facility chosen.[8] The average assisted living facility is in a commercial building, yet some assisted living services use large residential buildings, known as Residential Assisted Living homes, or "RAL". Residential Assisted Living homes can vary in price and amenities and can even be grouped into a separate term known as a Luxury Residential Assisted Living Home, or "LRAL". Assisted living facilities can range from a small residential house for one resident to extensive facilities providing services to hundreds of residents. Assisted living falls somewhere between an independent living community and a skilled nursing facility regarding the level of care provided.[9] Continuing care retirement facilities combine independent living, assisted living, and nursing care in one facility.
People living in newer assisted living facilities usually have private apartments. There is usually no special medical monitoring equipment that one would find in a nursing home, and their nursing staff may only be available at some hours. However, trained staff are usually on-site around the clock to provide other needed services. Household chores are performed: sheets are changed, laundry is done, and food is cooked and served as part of the base rent and included services.[9] Depending on their disclosure of services, assisted living services may include medication management, bathing assistance, dressing, escorts to meals and activities, toileting, transferring, and insulin injections by an RN.[10] Some assisted living providers also offer amenities like exercise rooms or a beauty parlor on site. Grocery service is often available, too. Where provided, private apartments generally are self-contained; i.e., they have their own bedroom and bathroom and may have a separate living area or small kitchen. Registered nurses and licensed practical nurses are available by phone or e-mail 24 hours a day to ensure proper teaching and/or education of staff is available.
Alternatively, individual living spaces may resemble a dormitory or hotel room with a private or semi-private sleeping area and a shared bathroom. There are usually common areas for socializing, as well as a central kitchen and dining room for preparing and eating meals. Since assisted living facilities are not federally regulated they follow the States Fair Housing Act. Several of the assisted living residents are not familiar or do not understand this act. Legal advocates and long term care ombudsman can be utilized to ensure residents are getting the best care possible based on this act. This information should be communicated to all residents to ensure there is no discrimination in the facility.[11]
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This section relies largely or entirely on a single source. (July 2016)
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An assisted living resident is a resident who needs assistance with at least one of the activities of daily living. A typical assisted living facility resident would usually be an older adult who does not need the level of care offered by a nursing home but prefers more companionship and needs some assistance in day-to-day living. Age groups will vary with every facility. There is currently a transformation occurring in long-term care. Assisted living communities are accepting higher and higher levels of care, and nursing homes are becoming a place for those undergoing rehabilitation after a hospital stay or needing extensive assistance. Many assisted living communities now accept individuals who need help with all activities of daily living. The "Overview of Assisted Living Report" from 2010 stated that 54 percent of assisted living residents are 85 years or older; 27 percent are 75–84 years old; 9 percent of residents are between 65 and 74 years; and 11 percent are younger than 65 years old. 74% of assisted living residents are female; 26 percent are male.[12]
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This section relies largely or entirely on a single source. (July 2016)
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The residence may assist in arranging the appropriate medical, health, and dental care services for each resident. The resident generally chooses their medical doctor and dental services. Residents who have periods of temporary incapacity due to illness, injury, or recovery from surgery often choose assisted living as a supportive option to help them recover quickly so they can return home. In the case of these short-term respite stays, assisted living residences act as the bridge between hospital and home. Short-term respite stays in assisted living are also an option for families when the primary caregiver goes out of town or cannot provide the needed care.
More recently built facilities are designed to emphasize ease of use for disabled people. Bathrooms and kitchens are designed with wheelchairs and walkers in mind. Hallways and doors are extra-wide to accommodate wheelchairs. These facilities are by necessity fully compliant with the Americans with Disabilities Act of 1990 (ADA) or similar legislation elsewhere. A study was done on how much functional assistance residents need on a day to day basis. The results are as follows, 77% of residents need assistance with bathing. 69% of residents need assistance with walking. 61% of residents need help with dressing. 51% of residents need assistance getting out of bed. 48% of residents need assistance toileting. 26% of residents need assistance eating.[13] The socialization aspects of ALFs are very beneficial to the occupants. Usually, the facility has many activities scheduled for the occupants, keeping in mind different disabilities and needs.
The shift to an acute care facility frequently results in a disturbance to the typical social routines of older individuals. This disruption can intensify the decline in their social connections and autonomy, amplifying feelings of loneliness and isolation.[14] Maintaining connections within social networks is crucial for individuals residing in assisted living facilities, and it plays a vital role in reinforcing their sense of identity. Facilities typically provide both organizational and environmental factors. A study found a variety of scheduled group recreational activities such as arts and crafts, culture clubs, yoga, music therapy, prayer, and spiritual reminiscence, were offered. Additionally, the facilities in this investigation were designed with open-plan layouts, outdoor gardens, and easily accessible areas for gatherings, potentially fostering engagement and interactions among residents.[14]
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Many ALFs also serve the needs of people with some form of dementia, including Alzheimer's disease and others with mental disabilities, as long as they do not present an imminent danger to themselves or others. The sections of the building where these residents live are often referred to as memory care. In the United States, legislation enacted by each state defines not only the level of care, but often what conditions are prohibited from being cared for in such a home.[citation needed] In California, these units are not "locked" they are secured by alarms, delays, keypads needing a code, etc. However, they are not locked units like a psychiatric ward.
Many ALFs will work to accommodate a person with severe forms of Alzheimer's by having separate private units. These specialized care areas are part of the main building but are secured so residents with Alzheimer's cannot leave and possibly do harm to themselves. These care areas usually house fewer people, and more attention from the caregivers is provided. The units, usually called locked units, focus on applying cognitive and mental activities to help keep the mind fresh. Since there is no cure for the disease, the goal is to work at prolonging or delaying the illness. If one is not engaged in an activity, one's memory will deteriorate more rapidly.
Assisted living facilities, initially established to support older Americans in their later years, have become increasingly focused on maximizing financial gains at the expense of their residents' well-being. Over the period from 2004 to 2021, the median annual cost of assisted living has outpaced inflation by 31%, increasing to $54,000 per year.[15] There are approximately 31,000 assisted living facilities in the United States, with four out of five operated for-profit. Half of all operators within the industry are achieving annual returns of 20% or more, exceeding operating costs by a substantial margin. These exceedingly high-profit margins are unprecedented even within other healthcare industry sectors.[15]
Assisted Living Facilities have the option to offer Medicare- and Medicaid-covered services, such as home health or personal care, to their residents. These services are similar to what individuals would typically receive in a private residence. ALF providers aiming for Medicare or Medicaid reimbursement for home health services need to comply with federal home health agency standards. ALFs can enter into contracts with Medicare or Medicaid providers to deliver covered home health, personal care, and other specified LTSS within their facilities for participating residents.[16] With an estimated 850,000 older Americans residing in assisted living facilities, the higher rents and the increasingly prevalent ancillary fees pose a significant housing and healthcare challenge for an elderly demographic that often struggles to address their needs.[15]
Instances of mistreatment, encompassing physical, sexual, verbal, psychological, emotional abuse, neglect, and financial exploitation, may manifest within an Assisted Living facility. Such mistreatment is characterized by the deliberate ill-treatment of a resident and can be perpetrated by the facility itself, fellow residents, or an external party with access to the resident's personal information. A study conducted to evaluate these concerns in the Assisted Living community revealed that verbal and physical abuse emerged as the primary category, with 28% of residents reporting experiences of abuse.[17]
A Miami Herald article covering the newspaper's 2011 investigation into assisted living facilities in Florida was nominated as a finalist for the Pulitzer Prize.[18] The newspaper's investigation found that:
The investigation found dozens of incidents of gross mismanagement and criminal behavior at assisted living facilities across Florida, a state of 20 million people, popular with American retirees. The newspaper requested the release of state documents related to the deaths of over 300 people in assisted living facilities between 2003 and 2011 but was denied these documents. Still, the newspaper's investigation found no less than 70 people who had died due to the "actions of their caregivers."[20] The deaths were found to have resulted from the mismanagement of assisted living facilities and by the practices of their staff and managers who drugged residents, deprived them of basic necessities such as food and water, abused residents verbally, psychologically and physically, and neglecting their needs.
Long-term care ombudsmen, whether volunteering or employed independently, function outside the scope of Assisted Living Facilities. They actively support and defend the well-being and rights of residents within these environments. Ombudsmen conduct regular, surprise visits to these facilities, where they observe conditions, listen to resident concerns, and strive to resolve issues on the residents' behalf. Beyond addressing complaints, they empower residents by providing information on their rights and options, considering the impact on their quality of life. Mandated by the Older Americans Act, ombudsman services are directed by residents, confidential, and offered free of charge. These advocates also work towards policy changes that enhance the overall well-being of individuals in long-term care settings.[17] Needs of residents being addressed can be as small as a change in the lunch menu or needing a new pair of glasses. 60%- 70% of the residents do not have family to ensure they are being well cared for. However, there is a large need for ombudsmen in the assisted living facility community.[21]
On July 30, 2013 Frontline ran an hour-long program[22] with help from ProPublica[23] detailing some tragedies that happened in assisted living. Currently, around 750,000 people inhabit assisted living facilities nationwide. The industry is largely controlled by for-profit chains with a focus on both resident care and shareholder satisfaction. There are disparities in care standards, training, and the definition of 'assisted living' across different states. Unlike nursing homes, assisted living facilities operate without federal regulation[24] An accompanying written brief cites deaths of residents, facilities that are understaffed, employees that are inadequately trained, and that an overall "push to fill facilities and maximize revenues has left staff overwhelmed and the care of residents endangered."
A related article by ProPublica (Thomson and Jones, July 29, 2013) states that a facility operated by Emeritus Senior Living "...had been found wanting in almost every important regard. And, in truth, those 'specially trained' staffers hadn't been trained to care for people with Alzheimer's and other forms of dementia, a violation of California law." It goes on to say, "The facility relied on a single nurse to track the health of its scores of residents, and the few licensed medical professionals who worked there tended not to last long," but also that "During some stretches, the facility went months without a full-time nurse on the payroll." ProPublica's article claimed the problem was not specific to one facility and that "State inspectors for years had cited Emeritus facilities across California." Emeritus replied to that claim, describing "any shortcomings as isolated," as well as that "any problems that arise are promptly addressed." The company cited their "growing popularity as evidence of consumer satisfaction."
In Pennsylvania, personal care and assisted living are defined separately. Personal care and assisted living in PA are regulated by the Pennsylvania Bureau of Human Services Licensing (a division of the Department of Human Services).[25] Up until January 2011, the terms "assisted living" and "personal care" were considered interchangeable. At that time, Pennsylvania began licensing assisted living facilities separately from personal care facilities.[26] Chapter 2800 of the 55 Pennsylvania Code defines assisted living as "a significant long-term care alternative to allow individuals to age in place," where residents "will receive the assistance they need to age in place and develop and maintain maximum independence, exercise decision-making and personal choice."[27]
Likewise, Chapter 2600 of the 55 Pa. Code defines personal care as "A premise in which food, shelter and personal assistance or supervision are provided for a period exceeding 24 hours, for four or more adults who are not relatives of the operator, who do not require the services in or of a licensed long-term care facility, but who do require assistance or supervision in activities of daily living or instrumental activities of daily living."[28] The differences between the two levels of care are broken down into three categories:
Assisted living is known as extra-care housing or retirement living, allowing residents over 55 or 60 to live independently. They are offered a self-contained flat or bungalow and have staff available 24 hours a day to provide personal care. Staff help wash, dress residents, take medication, and do domestic duties such as shopping and laundry; they also prepare and serve meals to residents if provided. Residents are often asked whether to own or rent their properties independently; the average cost ranges from £500 to £1,500, depending on where the resident lives. Assisted living accommodations often include a scheme manager or team of onsite support staff, nurses, and care staff, 24-hour emergency alarm systems, and communal lounges to socialise with other residents. Assisted living housing is regulated by the Care Quality Commission (CQC).[29]
cite news: CS1 maint: multiple names: authors list (link)cite journal: CS1 maint: multiple names: authors list (link)tin, A. 2010 March/April. 2010 largest AL providers. Assisted Living Executive, 10 - 19.
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Hospice care is a type of health care that focuses on the palliation (providing relief of pain) of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.
Hospice care in the United States is largely defined by the practices of the Medicare system and other health insurance providers, which cover inpatient or at-home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course. Hospice benefits include access to a multidisciplinary treatment team specialized in end-of-life care and can be accessed in the home, long-term care facility or the hospital.[1]
Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.[2]
The English word hospice is a borrowing from French. In France however, the word hospice refers more generally to an institution where sick and destitute people are cared for, and does not necessarily have a palliative connotation.
The goal of hospice care is to prioritize comfort, quality of life and individual wishes. How comfort is defined is up to each individual or, if the patient is incapacitated, the patient's family. This can include addressing physical, emotional, spiritual and/or social needs. In hospice care, patient-directed goals are integral and interwoven throughout the care.[3][4] Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.[1] Instead, hospices focus on palliative care to relieve pain and symptoms.[4]
This philosophy affects how hospice staff treat people and their families. Compared to general healthcare providers, hospice professionals take a different approach to talking to people and their families.[5] They are more likely to make predictions or express uncertainty around future events (e.g., "He might die this week" or "I think she might live longer") than to issue orders or prescribe actions (e.g., "She needs a nurse" or "He can't go home").[5]
The word hospice derives from Latin hospitum, meaning hospitality or place of rest and protection for the ill and weary.[1] Historians believe the first hospices originated in Malta around 1065, dedicated to caring for the ill and dying en route to and from the Holy Land.[6] The rise of the European Crusading movement in the 1090s placed the incurably ill into places dedicated to treatment.[7][8] In the early 14th century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes.[9] Hospices flourished in the Middle Ages, but languished as religious orders became dispersed.[7] They were revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul.[9] France continued to see development in the hospice field; the hospice of L'Association des Dames du Calvaire, founded by Jeanne Garnier, opened in 1843.[10] Six other hospices followed before 1900.[10]
Meanwhile, hospices developed in other areas. In the United Kingdom attention was drawn to the needs of the terminally ill in the middle of the 19th century, with Lancet and the British Medical Journal publishing articles pointing to the need of the impoverished terminally ill for good care and sanitary conditions.[11] Steps were taken to remedy inadequate facilities with the opening of the Friedenheim in London, which by 1892 offered 35 beds to patients dying of tuberculosis.[11] Four more hospices were established in London by 1905,[11] including the Hostel of God on Clapham Common founded in 1891 by Clara Maria Hole, Mother Superior of Sisterhood of St James' (Anglican) and taken over in 1896 by the Society of Saint Margaret of East Grinstead.[12] Australia, too, saw active hospice development, with notable hospices including the Home for Incurables in Adelaide (1879), the Home of Peace (1902) and the Anglican House of Peace for the Dying in Sydney (1907).[13] In 1899 New York City, the Servants for Relief of Incurable Cancer opened St. Rose's Hospice, which soon expanded to six locations in other cities.[10]
The more influential early developers of hospice included the Irish Religious Sisters of Charity, who opened Our Lady's Hospice in Harold's Cross, Dublin, Ireland, in 1879.[10] It served as many as 20,000 people—primarily with tuberculosis and cancer—dying there between 1845 and 1945.[10] The Sisters of Charity expanded internationally, opening the Sacred Heart Hospice for the Dying in Sydney in 1890, with hospices in Melbourne and New South Wales following in the 1930s.[14] In 1905, they opened St Joseph's Hospice in London.[9][15]
In Western society, the concept of hospice began evolving in Europe in the 11th century. In Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and pilgrims. The modern hospice concept includes palliative care for the incurably ill in institutions as hospitals and nursing homes, along with at-home care. The first modern hospice care was created by Dame Cicely Saunders in 1967. Saunders was a British registered nurse whose chronic health problems forced her to pursue a career in medical social work. The relationship she developed with a dying Polish refugee helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns as well as palliative comfort for physical symptoms.[16] After the refugee's death, Saunders began volunteering at St Luke's Home for the Dying Poor, where a physician told her that she could best influence the treatment of the terminally ill as a physician.[16] Saunders entered medical school while continuing her volunteer work at St. Joseph's. When she completed her degree in 1957, she took a position there.[16]
Saunders emphasized focusing on the patient rather than the disease and introduced the notion of 'total pain',[17] which included psychological and spiritual as well as physical discomfort. She experimented with opioids for controlling physical pain. She also considered the needs of the patient's family. She developed many foundational principles of modern hospice care at St Joseph's.[9]
She disseminated her philosophy internationally in a series of tours of the United States that began in 1963.[18][19] In 1967, Saunders opened St Christopher's Hospice. Florence Wald, the dean of Yale School of Nursing, who had heard Saunders speak in America, spent a month working with Saunders there in 1969 before bringing the principles of modern hospice care back to the United States, establishing Hospice, Inc. in 1971.[9][20] Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee, on November 14, 1975.[21] By 1977 the National Hospice Organization had been formed, and by 1979, a president, Ann G. Blues, had been elected and principles of hospice care had been addressed.[22] At about the same time that Saunders was disseminating her theories and developing her hospice, in 1965, Swiss psychiatrist Elisabeth Kübler-Ross began to consider social responses to terminal illness, which she found inadequate at the Chicago hospital where her American physician husband was employed.[23] Her 1969 best-seller, On Death and Dying, influenced the medical profession's response to the terminally ill.[23] Dr. Balfour Mount introduced the concept of palliative care to Canada in the early 1970s and established the first hospice program at the Royal Victoria Hospital in Montreal, laying the foundation for modern palliative care practices. Saunders and other thanatology pioneers helped to focus attention on the types of care available to them.[18]
In 1984, Josefina Magno, who had been instrumental in forming the American Academy of Hospice and Palliative Medicine and sat as first executive director of the US National Hospice Organization, founded the International Hospice Institute, which in 1996 became the International Hospice Institute and College and later the International Association for Hospice and Palliative Care (IAHPC).[24][25] The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions.[26] IAHPC founding member Derek Doyle told the British Medical Journal in 2003 that Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries."[25] Standards for Palliative and Hospice Care have been developed in countries including Australia, Canada, Hungary, Italy, Japan, Moldova, Norway, Poland, Romania, Spain, Switzerland, the United Kingdom and the United States.[27]
In 2006, the United States–based National Hospice and Palliative Care Organization (NHPCO) and the United Kingdom's Help the Hospices jointly commissioned an independent, international study of worldwide palliative care practices. Their survey found that 15% of the world's countries offered widespread palliative care services with integration into major health care institutions, while an additional 35% offered some form of palliative care services, in some cases localized or limited.[28] As of 2009, an estimated 10,000 programs internationally provided palliative care, although the term hospice is not always employed to describe such services.[29]
In hospice care, the main guardians are the family care giver(s) and a hospice nurse/team who make periodic visits. Hospice can be administered in a nursing home, hospice building, or sometimes a hospital; however, it is most commonly practiced in the home.[30] Hospice care targets the terminally ill who are expected to die within six months.
Hospice was the subject of the Netflix 2018 Academy Award–nominated[31] short documentary End Game,[32] 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.[33]
In 2016, an open letter[34] to the singer David Bowie written by a palliative care doctor, Professor Mark Taubert, talked about the importance of good palliative care and hospice provision, especially being able to express wishes about the last months of life, and good education about end of life care generally. The letter went viral after David Bowie's son Duncan Jones shared it.[35] The letter was subsequently read out by the actor Benedict Cumberbatch and the singer Jarvis Cocker at public events.[36][37]
Hospice faced resistance from cultural and professional taboos against open communication about death among healthcare providers and the wider population, discomfort with unfamiliar medical techniques and perceived professional callousness towards the terminally ill.[38] Nevertheless, the movement has spread throughout the world.[39]
A hospice opened in 1980 in Harare (Salisbury), Zimbabwe, the first in Sub-Saharan Africa.[40] In spite of skepticism in the medical community,[38] the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed.[41] In 1990, Nairobi Hospice opened in Nairobi, Kenya.[41] As of 2006, Kenya, South Africa and Uganda were among 35 countries offering widespread, well-integrated palliative care.[41] Programs adopted the United Kingdom model, but emphasise home-based assistance.[42]
Following the foundation of hospice in Kenya in the early 1990s, palliative care spread throughout the country. Representatives of Nairobi Hospice sit on the committee to develop a Health Sector Strategic Plan for the Ministry of Health and work with the Ministry of Health to help develop palliative care guidelines for cervical cancer.[41] The Government of Kenya supported hospice by donating land to Nairobi Hospice and providing funding to several of its nurses.[41]
In South Africa, hospice services are widespread, focusing on diverse communities (including orphans and homeless) and offered in diverse settings (including in-patient, day care and home care).[41] Over half of hospice patients in South Africa in the 2003–2004 year were diagnosed with AIDS, with the majority of the remaining diagnosed with cancer.[41] Palliative care is supported by the Hospice Palliative Care Association of South Africa and by national programmes partly funded by the President's Emergency Plan for AIDS Relief.[41]
Hospice Africa Uganda (HAU), founded by Anne Merriman, began offering services in 1993 in a two-bedroom house loaned for the purpose by Nsambya Hospital.[41] HAU has since expanded to a base of operations at Makindye, Kampala, with hospice services offered at roadside clinics by Mobile Hospice Mbarara since January 1998. That same year the Little Hospice Hoima opened in June. Hospice care in Uganda is supported by community volunteers and professionals, as Makerere University offers a distance diploma in palliative care.[43] The government of Uganda published a strategic plan for palliative care that permits nurses and clinical officers from HAU to prescribe morphine.
Canadian physician Balfour Mount, who first coined the term "palliative care", was a pioneer in medical research and in the Canadian hospice movement, which focused primarily on palliative care in a hospital setting.[44][45] After meeting Kübler-Ross, Mount studied the experiences of the terminally ill at Royal Victoria Hospital, Montreal; the "abysmal inadequacy", as he termed it, that he found prompted him to spend a week with Cicely Saunders at St. Christopher's.[46] Mount decided to adapt Saunders' model for Canada. Given differences in medical funding, he determined that a hospital-based approach would be more affordable, creating a specialized ward at Royal Victoria in January 1975.[45][46] Canada's official languages include English and French, leading Mount to propose the term "palliative care ward", as the word hospice was already used in France to refer to nursing homes.[45][46] Hundreds of palliative care programs then followed throughout Canada through the 1970s and 1980s.[47]
However, as of 2004, according to the Canadian Hospice Palliative Care Association (CHPCA), hospice palliative care was only available to 5–15% of Canadians, with government funding declining.[48] At that time, Canadians were increasingly expressing a desire to die at home, but only two of Canada's ten provinces were provided medication cost coverage for home care.[48] Only four of ten identified palliative care as a core health service.[48] At that time, palliative care was not widely taught at nursing schools or universally certified at medical colleges; only 175 specialized palliative care physicians served all of Canada.[48]
Hospice in the United States has grown from a volunteer-led movement to improve care for people dying alone, isolated, or in hospitals, to a significant part of the health care system. In 2010, an estimated 1.581 million patients received hospice services. Hospice is the only Medicare benefit that includes pharmaceuticals, medical equipment, twenty-four-hour/seven-day-a-week access to care, and support for loved ones following a death. Hospice care is covered by Medicaid and most private insurance plans.[49] Most hospice care is delivered at home. Hospice care is available to people in home-like hospice residences, nursing homes, assisted living facilities, veterans' facilities, hospitals and prisons.
Florence Wald, Dean of the Yale School of Nursing, founded one of the first hospices in the United States in New Haven, Connecticut, in 1974.[4] The first hospital-based palliative care consultation service developed in the US was the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital.[50] The first US-based palliative medicine and hospice service program was started in 1987 by Declan Walsh at the Cleveland Clinic Cancer Center in Cleveland, Ohio.[51] The program evolved into The Harry R. Horvitz Center for Palliative Medicine, which was designated as a World Health Organization international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed; some notable ones are: the Palliative Care Program at the Medical College of Wisconsin (1993); Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine (1997).
In 1982, Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions.[52] As of 2017[update], 1.49 million Medicare beneficiaries were enrolled in hospice care for one day or more, which is a 4.5% increase from the previous year.[53] From 2014 to 2019, Asian- and Hispanic-identifying beneficiaries of hospice care increased by 32% and 21% respectively.[53]
The first hospice to open in the United Kingdom was the Trinity Hospice in Clapham south London in 1891, on the initiative of the Hoare banking family.[54] More than half a century later, a hospice movement developed after Dame Cicely Saunders opened St Christopher's Hospice in 1967, widely considered the first modern hospice. According to the UK's Help the Hospices, in 2011 UK hospice services consisted of 220 inpatient units for adults with 3,175 beds, 42 inpatient units for children with 334 beds, 288 home care services, 127 hospice at-home services, 272 day care services, and 343 hospital support services.[55] These services together helped over 250,000 patients in 2003 and 2004. Funding varies from 100% funding by the National Health Service to almost 100% funding by charities, but the service is always free to patients. The UK's palliative care has been ranked as the best in the world "due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue."[56]
As of 2006, about 4% of all deaths in England and Wales occurred in a hospice setting (about 20,000 patients);[57] a further number of patients spent time in a hospice, or were helped by hospice-based support services, but died elsewhere.
Hospices also provide volunteering opportunities for over 100,000 people in the UK, whose economic value to the hospice movement has been estimated at over £112 million.[58]
According to the Global Atlas of Palliative Care at the End of Life, 78% of adults and 98% of children in need of palliative care at the end of life live in low and middle-income countries. Nevertheless, hospice and palliative care provision in Egypt is limited and sparsely available relative to the size of the population.[59] Some of the obstacles to the development of these services have included the lack of public awareness, restricted availability of opioids, and the absence of a national hospice and palliative care development plan.[60] Key efforts made in the past 10 years have been initiated by individuals allowing for the emergence of the first non-governmental organisation providing primarily home-based hospice services in 2010,[61] the opening of one palliative medicine unit at Cairo University in 2008 and an inpatient palliative care unit in Alexandria.[60]
Models of both home-based care and stand-alone hospices exist globally, but with the cultural and societal preferences of patients and their families to die at home in Egypt there is an inclination to focus on the development of home-based hospice and palliative care services.[62]
The first hospice unit in Israel opened in 1983.[63] More than two decades later, a 2016 study found that 46% of the general Israeli public had never heard of it, despite the 70% of physicians who reported that they had the skill to treat patients according to palliative principles.[64]
Hospice care in Australia predated the opening of St Christophers in London by 79 years. The Irish Sisters of Charity opened hospices in Sydney (1889) and in Melbourne (1938). The first hospice in New Zealand opened in 1979.[65] Hospice care entered Poland in the mid-1970s.[66] Japan opened its first hospice in 1981, officially hosting 160 by July 2006.[67] India's first hospice, Shanti Avedna Ashram, opened in Bombay in 1986.[68][69][70][71] The first hospice in the Nordics opened in Tampere, Finland in 1988.[72] The first modern free-standing hospice in China opened in Shanghai in 1988.[73] The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990.[38][74] The first free-standing hospice in Hong Kong, where the term for hospice translates as "well-ending service", opened in 1992.[38][75]
The International Hospice Institute was founded in 1984.[4]
In 2006, the first World Hospice and Palliative Care Day was organised by the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide. The event takes place on the second Saturday of October every year.[76]
Nurses that work in hospice in the home healthcare setting aim to relieve pain and holistically support their patient and the patient's family. Patients can receive hospice care when they have less than six months to live or would like to shift the focus of care from curative to comfort care. The goal of hospice care is to meet the needs of both the patient and family, knowing that a home death is not always the best outcome. Medicare covers all costs of hospice treatment.[77]
The hospice home health nurse must be skilled in both physical care and psychosocial care. Most nurses will work with a team that includes a physician, social worker and possibly a spiritual care counselor. Some of the nurse's duties will include reassuring family members, and ensuring adequate pain control. The nurse will need to explain to the patient and family that a pain-free death is possible, and scheduled opioid pain medications are appropriate in this case. The nurse will need to work closely with the medical provider to ensure that dosing is appropriate, and in the case of tolerance, the dose is raised. The nurse should be aware of cultural differences and needs and should aim to meet them. The nurse will also support the family after death and connect the family to bereavement services.[77]
That vision, fuelled by her drive and gritty determination, led to the International Hospice Institute, soon to metamorphose into the International Hospice Institute and College as the need for education and training became recognised, and finally into today's International Association for Hospice and Palliative Care.
In 1986, Professor D'Souza opened the first Indian hospice, Shanti Avedna Ashram, in Mumbai, Maharashtra, central India.
The pin drop silence gives no indication that there are 60 patients admitted at the moment in Shanti Avedna Sadan-the country's first hospice that is located on the quiet incline leading to the Mount Mary Church in Bandra.
Established by the Society for the Promotion of Hospice Care in 1992, Bradbury Hospice was the first institution in Hong Kong to provide specialist hospice care.
cite book: CS1 maint: location missing publisher (link) CS1 maint: others (link)
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