Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms, while attending to their emotional and spiritual needs at the end of their life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering, providing 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. The development of such end of life care balances the efforts of modern medicine to find ways to prolong life, regardless of the quality of life.
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 benefits includes 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.
Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Hospice care includes assistance for patients' families to help them cope and provide care and support to keep the patient at home if possible. Bereavement counseling for the family is also included as well as spiritual guidance in accordance with their faith.
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. Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death.
The modern hospice concept is focused on "palliative care," a term coined by Canadian physician Balfour Mount to describe an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Mount created the first palliative care ward at the Royal-Victoria Hospital in Montreal in 1973.
Hospice care provides palliative care for the incurably ill who are expected to die within six months. 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.
The word "hospice" derives from Latin hospitum, meaning hospitality or place of rest and protection for the ill and weary. In Western society, the concept of hospice began evolving in Europe in the eleventh century. In Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as for travelers and pilgrims.
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. The rise of the European Crusading movement in the 1090s placed the incurably ill into places dedicated to treatment.
In the early fourteenth century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes. Hospices flourished in the Middle Ages, but languished as religious orders became dispersed. They were revived in the seventeenth century in France by the Daughters of Charity of Saint Vincent de Paul. 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. Six other hospices followed before 1900.
In the United Kingdom. Attention was drawn to the needs of the terminally ill in the middle of the nineteenth 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. 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. Four more hospices were established in London by 1905.
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). 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.
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. It served many as 20,000 people—primarily suffering tuberculosis and cancer—dying there between 1845 and 1945. 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. In 1905, they opened St Joseph's Hospice in London.
Modern hospice care
The first modern hospice care was created by Cicely Saunders in 1967. Dame Cicely 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. 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. 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.
Saunders emphasized focusing on the patient rather than the disease and introduced the notion of "total pain," which included psychological and spiritual as well as physical discomfort. She experimented with opioids for controlling physical pain, and also considered the needs of the patient's family. She developed many foundational principles of modern hospice care at St Joseph's.
Saunders disseminated her philosophy internationally in a series of tours of the United States beginning in 1963.
At about the same time, 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. Her 1969 best-seller, On Death and Dying, influenced the medical profession's response to the terminally ill. Along with Saunders and other thanatology pioneers, she helped to focus attention on the types of care available to the dying.
In 1967, Saunders opened St Christopher's Hospice in South London, England. 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. In 1974, Wald led the founding of the first hospice in the United States, the Connecticut Hospice located in Branford, Connecticut. Later in life, Wald became interested in the provision of hospice care within prisons.
Another early hospice program in the United States, Alive Hospice, was founded in Nashville, Tennessee, on November 14, 1975. By 1978 the National Hospice Organization had been formed, and by 1979 Ann G. Blues had been elected as president and principles of hospice care had been addressed.
In 1984, Dr. 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. In 1996 it became the International Hospice Institute and College and later the International Association for Hospice and Palliative Care (IAHPC). Magno had seen "more than 8000 hospice and palliative services established in more than 100 countries." The IAHPC follows the philosophy that each country should develop a palliative care model based on its own resources and conditions.
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.
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.
World Hospice and Palliative Care Day
In 2006, the first World Hospice and Palliative Care Day was organized by the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organization that support the development of hospice and palliative care worldwide. The event takes place on the second Saturday of October every year.
The first hospice in Sub-Saharan Africa opened in 1980 in Harare (Salisbury), Zimbabwe. In spite of skepticism in the African medical community, the hospice movement spread, and in 1987 the Hospice Palliative Care Association of South Africa formed. Nairobi Hospice was established in 1988 in Nairobi, Kenya.
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, Kampala, Uganda, supported by [[Hospice Africa] charity established in Liverpool UK, Merriman's birthplace. Investing in education programs with the ethos that the patient and family are at the center of the program, an affordable and culturally appropriate model for Africa was developed. A home based care model of palliative care is supplemented with hospital consultations where patients are allowed home based on their health needs and their own wishes. HAU centers also treat outpatients. These complementary services allow patients flexibility and options when facing the end of life. Today, HAU is recognized in Uganda as a center of excellence and a model in community based care.
Today, Hospice Africa continues its vision of palliative care for all those in need, providing both care to patients and training for providers in over 30 countries across Africa.
The Canadian hospice movement focuses primarily on palliative care in a hospital setting. Having read Kubler-Ross's writings, Balfour Mount studied the experiences of the terminally ill at Royal Victoria Hospital, Montreal. The "abysmal inadequacy," as he termed it, that he found there prompted him to spend a week with Cicely Saunders at St. Christopher's. Inspired, 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. 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. Hundreds of palliative care programs followed throughout Canada through the 1970s and 1980s.
In 1991, the Canadian Hospice Palliative Care Association (CHPCA) was formally established as a national charitable organization with the mission to provide leadership in hospice palliative care in Canada. The organization works to advance and advocate for quality end-of-life/hospice palliative care throughout Canada. CHPCA works in close partnership with other national organizations with the goal of ensuring that all Canadians have access to quality hospice palliative care.
Hospice care 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. 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. 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: most notably 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).
Today, hospice benefits include access to a multidisciplinary treatment team specialized in end of life care. These benefits are 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 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.
The Centers for Medicare and Medicaid Services has defined four kinds, or “levels,” of hospice care: hospice care at home, where services that support the patient and their family are provided at home; "continuous care," which is round-the-clock hospice care at home; inpatient hospice care, where the patient's symptoms cannot be managed at home; and respite care which offers a brief stay at an inpatient hospice facility to give primary caregivers a break.
The first hospice to open in the United Kingdom was the Royal Trinity Hospice in Clapham south London in 1891, on the initiative of the Hoare banking family. 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.
Hospice funding varies from 100 percent by the National Health Service to almost 100 percent 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."
Hospice and palliative care are well-established in Australia, New Zealand, and much of Asia and Western Europe.
The first hospice in New Zealand, Mary Potter Hospice, opened on June 1979 in Wellington. Later that year, Te Omanga Hospice in Lower Hutt, and Saint Joseph's Mercy Hospice in Auckland, were also opened. From these small beginnings the hospice movement in New Zealand grew into 42 hospices by the beginning of the twenty-first century.
Developing out of the Australian Association for Hospice and Palliative Care Inc., which started in 1991, Palliative Care Australia launched in 1998 with the mission to influence, foster and promote the delivery of quality palliative care for all who need it, when and where they need it.
Japan opened its first hospice in 1981, officially hosting over 200 by 2010. The Japan Hospice/Palliative Care Foundation was established on December 28, 2000, with the following mission:
- conducting investigation and research for the purpose of improving the quality of hospice/palliative care.
- providing technical support to the staff involved, including doctors, nurses, pharmacists, co-medical staff and social workers.
- sponsoring PR activities and international exchange related to hospice/palliative care.
India's first hospice, Shanti Avedna Ashram, opened in Bombay in 1986.
The first modern free-standing hospice in China opened in Shanghai in 1988. The first hospice unit in Taiwan, where the term for hospice translates as "peaceful care", opened in 1990.
The first hospice in the Nordics opened in Tampere, Finland in 1988. Their treatment emphasizes dealing with the patient in a holistic manner, especially valuing the dignity and individuality of each patient. In addition to the inpatient facility, patients may receive hospice home care while staying at home.
Hospice care at home
Nurses working in hospice home settings aim to relieve pain and holistically support their patients and patients families.
The hospice home health nurse must be skilled in both physical care and psychosocial care, and be aware of cultural differences and needs and should aim to meet them. 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 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. A pain free death is possible, and scheduled opioid pain medications are appropriate in this case. The hospice nurse also supports the family after death and may connect the family to bereavement services.
A children's hospice or pediatric hospice is a hospice specifically designed to improve the quality of life of children and young people who are not expected to reach adulthood, helping with the emotional and physical challenges they face, and also providing respite care for their families.
Pediatric hospice care is family-centric rather than patient-centric, with the parents of the sick child taking the lead in determining the plan of care in collaboration with their physician. The aim is to enable the family to provide the support the child deserves, without undermining care and support for the rest of the family.
A typical children's hospice service offers:
- Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
- Support from social workers and therapists trained in pediatric hospice care
- Availability of chaplains to offer spiritual and emotional support for the child and the family
- Trained volunteers who can spend time with the child or siblings, to give the parents some time alone
- Bereavement counseling and support, typically offered as individual home support, as well as groups and work with brothers or sisters
Helen House in Oxfordshire, England was the world's first children's hospice, opening in November, 1982. Helen House sprang from a friendship between Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care. Helen House has inspired the establishment of almost 50 other children's hospices across the UK and around the world.
The first children's hospice in Scotland, Rachel House, run by Children's Hospice Association Scotland opened in March 1996. Following its success, Robin House was opened in Balloch, Dunbartonshire, in 2005.
The children's hospice movement is still in a relatively early stage in the United States, where many of the functions of a children's hospice are provided by children's hospitals. When physicians find that a child can no longer be medically cured, along with the parents a decision is made to end care, keeping in mind the best interests of the child. The place of death (home, hospice, hospital) should be a matter of individual choice.
Most parents of children who have serious development disorders actively share the end of life decision making process. Parents recognize the importance of advocating for the best interest of their child. Visible suffering, remaining quality of life, and the child's will to survive are important factors for parents in making end of life decisions.
- ↑ Anne Osborne Kilpatrick and James A. Johnson (eds.), Handbook of Health Administration and Policy (CRC Press, 1998).
- ↑ 2.0 2.1 2.2 Katherine Marshall and Deborah Hale, Understanding Hospice Home Healthcare Now 35(7) (July/August 2017): 396-397. Retrieved September 19, 2020.
- ↑ What's the Difference Between Palliative Care and Hospice Care? WebMD. Retrieved September 19, 2020.
- ↑ 4.0 4.1 Janet Moscrop and Joy Robbins, Caring for the Dying Patient and the Family (Springer, 1995, ISBN 978-1565933286).
- ↑ 5.0 5.1 5.2 5.3 5.4 5.5 Stephen R. Connor, Hospice: Practice, Pitfalls, and Promise (Routledge, 1997, ISBN 978-1560325123).
- ↑ 6.0 6.1 6.2 6.3 6.4 6.5 Milton J. Lewis, Medicine and Care of the Dying: A Modern History (Oxford University Press, 2006, ISBN 978-0195175486).
- ↑ 7.0 7.1 7.2 Belinda Poor and Gail P. Poirrier, End of Life Nursing Care (Jones & Bartlett, 2001).
- ↑ David Clark, Total Pain: The Work of Cicely Saunders and the Hospice Movement American Pain Society Bulletin 10(4) (2000): 13-15. Retrieved September 19, 2020.
- ↑ 9.0 9.1 John S. Spratt, Rhonda L. Hawley, and Robert E. Hoye (eds.), Home Health Care: Principles and Practices (Routledge, 1996, ISBN 978-1884015939).
- ↑ Sandra B. Lewenson and Eleanor Krohn Herrman (eds.), Capturing Nursing History (Springer Publishing Company, 2007, ISBN 978-0826115669).
- ↑ Laura Newman, Elisabeth Kübler-Ross British Medical Journal 329(7466) (2004): 627. Retrieved September 21, 2020.
- ↑ Florence Wald National Women's Hall of Fame. Retrieved September 19, 2020.
- ↑ About Alive Alive Hospice. Retrieved September 21, 2020.
- ↑ Ann Goben Blues, Hospice and Palliative Nursing Care (Grune and Stratton, 1984, ISBN 978-0808915775).
- ↑ David Clark, Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999 (Oxford University Press, 2002, ISBN 978-0198516071).
- ↑ Laura Newman, Josefina Bautista Magno British Medical Journal 327(7417) (2003): 753. Retrieved September 21, 2020.
- ↑ IAHPC History International Association for Hospice & Palliative Care. Retrieved September 21, 2020.
- ↑ World Hospice and Palliative Care Day Retrieved September 22, 2020.
- ↑ Eldryd Parry, Richard Godfrey, David Mabey, and Geoffrey Gill (eds.), Principles of Medicine in Africa (Cambridge University Press, 2004, ISBN 978-0521806169).
- ↑ About HPCA Hospice Palliative Care Association of South Africa. Retrieved September 22, 2020.
- ↑ Nairobi Hospice Retrieved September 22, 2020.
- ↑ History of Hospice Africa Hospice Africa Uganda. Retrieved September 22, 2020.
- ↑ Hospice Africa. Retrieved September 22, 2020.
- ↑ Denice Kopchak Sheehan, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson, Hospice and Palliative Care: Concepts and Practice (Jones & Bartlett Learning, 2003, ISBN 978-0763715663).
- ↑ 25.0 25.1 25.2 Georgina Feldberg, Molly Ladd-Taylor, and Alison Li, Women, Health and Nation: Canada and the United States Since 1945 (McGill-Queen's University Press, 2003, ISBN 978-0773525016).
- ↑ Canadian Hospice Palliative Care Association Retrieved September 23, 2020.
- ↑ Daniel M. Fox and Rosemary Gibson, Pioneer Programs in Palliative Care: Nine Case Studies Milbank Report, October 2000. Retrieved September 24, 2020.
- ↑ The 4 Levels of Hospice Care VITAS Healthcare. Retrieved September 23, 2020.
- ↑ Our history Royal Trinity Hospice. Retrieved September 24, 2020.
- ↑ David Line, Quality of Death Index 2015: Ranking palliative care across the world The Economist Intelligence Unit, October 6, 2015. Retrieved September 24, 2020.
- ↑ Michael McCabe, The Hospice Movement in New Zealand - 25 Years On The Nathaniel Centre, August 2004. Retrieved September 24, 2020.
- ↑ About PCA Palliative Care Australia. Retrieved September 24, 2020.
- ↑ Objectives of JHPF Japan Hospice Palliative Care Foundation. Retrieved September 24, 2020.
- ↑ Nigel Sykes, Michael Bennet, and Chun-su Yuan, Clinical Pain Management (CRC Press, 2008, ISBN 978-0340940075).
- ↑ Samantha Mei-che Pang, Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements (Brill Rodopi, 2003, ISBN 978-9042009448).
- ↑ Yuen-Liang Lai and Wen Hao Su, Palliative medicine and the hospice movement in Taiwan Supportive Care in Cancer 5(5) (September 1997): 348–350. Retrieved September 23, 2020.
- ↑ Welcome to Pirkanmaa Hospice Pirkanmaan Hoitokoti. Retrieved September 24, 2020.
- ↑ 38.0 38.1 Mary A. Nies and Melanie McEwen, Community/Public Health Nursing: Promoting the Health of Populations (Saunders, 2018, ISBN 978-0323528948).
- ↑ Pediatric Hospice Care VITAS Healthcare. Retrieved September 24, 2020.
- ↑ Our History Helen & Douglas House. Retrieved September 25, 2020.
- ↑ Brian McIver, Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday Daily Record, March 21, 2016.
- ↑ Michele Puckey and Andrew Bush, "Passage to Paradise" Ethics and end-of-life decisions in children Paediatric Respiratory Reviews 12(2) (2011)139–143. Retrieved September 25, 2020.
- ↑ I.H. Zaal-Schuller, M.A. de Vos, P.M. Ewals, J.B. van Goudoever, and D.L. Willems, End-of-life decision-making for children with severe developmental disabilities: The parental perspective Research in Developmental Disabilities 49-50 (2016):235–246. Retrieved September 25, 2020.
ReferencesISBN links support NWE through referral fees
- Blues, Ann Goben. Hospice and Palliative Nursing Care. Grune and Stratton, 1984. ISBN 978-0808915775
- Clark, David. Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999. Oxford University Press, 2002. ISBN 978-0198516071
- Connor, Stephen R. Hospice: Practice, Pitfalls, and Promise. Routledge, 1997. ISBN 978-1560325123
- Feldberg, Georgina, Molly Ladd-Taylor, and Alison Li. Women, Health and Nation: Canada and the United States Since 1945. McGill-Queen's University Press, 2003. ISBN 978-0773525016
- Kilpatrick, Anne Osborne, and James A. Johnson (eds.). Handbook of Health Administration and Policy. CRC Press, 1998.
- Lewenson, Sandra B., and Eleanor Krohn Herrman (eds.). Capturing Nursing History. Springer Publishing Company, 2007. ISBN 978-0826115669
- Lewis, Milton J. Medicine and Care of the Dying: A Modern History. Oxford University Press, 2006. ISBN 978-0195175486
- Moscrop, Janet, and Joy Robbins. Caring for the Dying Patient and the Family. Springer, 1995. ISBN 978-1565933286
- Nies, Mary A., and Melanie McEwen. Community/Public Health Nursing: Promoting the Health of Populations. Saunders, 2018. ISBN 978-0323528948
- Pang, Samantha Mei-che. Nursing Ethics in Modern China: Conflicting Values and Competing Role Requirements. Brill Rodopi, 2003. ISBN 978-9042009448
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- Saunders, Cicely M., and Robert Kastenbaum (eds.). Hospice Care on the International Scene. Springer Pub. Co., 1997. ISBN 978-0826195807
- Sheehan, Denice Kopchak, Walter B. Forman, Judith A. Kitzes, and Robert P. Anderson. Hospice and Palliative Care: Concepts and Practice. Jones & Bartlett Learning, 2003. ISBN 978-0763715663
- Spratt, John S., Rhonda L. Hawley, and Robert E. Hoye (eds.). Home Health Care: Principles and Practices. Routledge, 1996. ISBN 978-1884015939
- Sykes, Nigel, Michael Bennet, and Chun-su Yuan. Clinical Pain Management. CRC Press, 2008. ISBN 978-0340940075
- Worpole, Ken. Modern Hospice Design: The Architecture of Palliative Care. Routledge, 2009. ISBN 978-0415451802
All links retrieved September 25, 2020.
- What is Hospice? Hospice Foundation of America
- What Are Palliative Care and Hospice Care? National Institute on Aging
- What Is Hospice Care? WebMD
- Hospice care: Comforting the terminally ill Mayo Clinic
- Hospice FAQs National Hospice and Palliative Care Organization
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