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A children's hospice is a hospice specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.
A typical children's hospice service offers:[ citation needed ]
Children's hospice services work with families from all faiths, cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family. Many have a chaplain who is familiar with a variety of faiths and customs. Each service is typically an independent charity which relies on public support to continue their work.[ citation needed ]
Children's hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families. [1]
They provide flexible, practical and free support at home and in the hospice to the entire family, often over many years and at any stage of the child's or young person's illness. This includes short breaks and daytime activities enabling families to get a rest; help with the control of pain or other distressing symptoms; and support for family members, including brothers and sisters. When the end of a child's life approaches, children's hospice services are there to provide end-of-life care and bereavement support for as long as it's needed, helping families and friends approach death with dignity and peace.[ citation needed ]
Helen House in Oxfordshire was the world's first children's hospice. [2] It opened 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. [3]
The first children's hospice in Scotland Rachel House, run by Children's Hospice Association Scotland opened in March 1996. [4]
There are now over 40 operational children's hospice services open across the UK. [3] Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
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. In 1983, of the 1,400 hospices in the United States, only four were able to accept children. When physicians have to decide 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 interest of the child. When a decision between the parents and physicians cannot be reached, which is a very small percentage. The physicians are then not obligated to provide any therapy care that the doctors have not deemed necessary towards the care goals of the child. [5] Most parents of the children that have serious development disorders actively share the end of life decision-making process. The main factors that parents take into consideration when making end-of-life care decisions are the importance to advocate for the best interest of their child. Also, the visible suffering, the remaining quality of life, and the child's will to survive is an influence. [6]
Key developments since the early stages of development in Children's Hospice care include:
Through the efforts of CHI, most of the over 3,000 hospices in the U.S. will now consider accepting children. Also, approximately 450 programs have children-specific hospice, palliative, or home care services. [8]
There are a few independent children's hospice homes, including:
Children's hospitals today have ethics consultation. Ethics consultation is a conference that is intended to help Patients, Staff and other resolve ethical concerns. It all begins with taking into consideration of the patient's ethical beliefs, families, and those professionals involved in the case. Different individuals tend to abide by different ethical beliefs and ethical dilemmas tend to rise out of the difference in values or the priority of those shared values. Additional Institutions that care for those patients have certain set of values. Some institutions are specialized in prioritizing patient care and others are devoted to research. Some Hospitals are public, others are private. Some serve their community and values can vary from community to community which can also cause disagreements. [16] Institutions and hospitals also have value of their own that are written in their Mission Statement of the Institution.
Ethic committees began in the late 1960s and early 1970s. The original purpose was to bring voices to conversations about ethically controversial clinical situations. The original voices brought to the table of discussion of ethic committees were Theologians, philosophers, social scientists, scholars in the humanities and other experts. Over the years ethics consultations have become more widely accepted. Most hospitals in the United States and across the world now have ethics committees and process for ethics consultation. In the early 1970s many experts realized that the medical education was not designed and physicians were not trained to deal with ethical issues associated with new technologies such as mechanical ventilation, dialysis and transplantation. Before the creation of such technology kidney failure was sure to be fatal, now physicians were starting to make choices about where, when, and how someone could die. One of the solutions was to invite theologians, philosophers and social scientist that would help physicians think and solve complicated ethical issues. [17]
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.
Futile medical care is the continued provision of medical care or treatment to a patient when there is no reasonable hope of a cure or benefit.
Dame Cicely Mary Strode Saunders was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the importance of palliative care in modern medicine, and opposing the legalisation of voluntary euthanasia.
Frances Dominica Ritchie OBE, DL, FRCN (Hon) is a British nurse and Anglican religious sister, specializing in palliative care. She founded Helen & Douglas House, two hospices ("respices") for seriously ill young people.
End-of-life care (EOLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.
The American Academy of Hospice and Palliative Medicine (AAHPM) is a professional organization for physicians specializing in Hospice and Palliative Medicine, headquartered in Chicago, Illinois. Membership is open to all health care providers committed to improving the care of patients with serious or life-threatening illnesses. AAHPM has more than 5,200 members; 82 percent are physicians, 12 percent are nurses or other health care providers and 6 percent are residents or students.
Community Hospice & Palliative Care, also known simply as Community Hospice, is a not-for-profit hospice, which has served the Greater Jacksonville Metropolitan Area since its inception in 1979. The organization was the first hospice program in Northeast Florida and one of a few operating programs in the state when Florida began granting hospice licenses in 1981; Community Hospice received their license in 1983 and in 2008, assisted nearly 1,000 patients daily and more than 6,000 patients a year.
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.
Hospice care is a type of health care that focuses on the palliation 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.
Rainbows the East Midlands Children’s Hospice is a registered charity in England, Number 1014051. The charity provides palliative care and support for children, young people, and their families, when faced with life-limiting conditions.
Father Eugeniusz Dutkiewicz SAC Hospice in Gdańsk, a charitable organization, founded by the Pallottine priest E. Dutkiewicz in 1983, provides palliative care for the terminally ill patients.
Diane E. Meier, an American geriatrician and palliative care specialist. In 1999, Dr. Meier founded the Center to Advance Palliative Care, a national organization devoted to increasing access to quality health care in the United States for people living with serious illness. She continues to serve as CAPC's Director Emerita and Strategic Medical Advisor. Meier is also Vice-Chair for Public Policy, Professor of Geriatrics and Palliative Medicine and Catherine Gaisman Professor of Medical Ethics at the Icahn School of Medicine at Mount Sinai Hospital in New York City. Meier was founder and Director of the Hertzberg Palliative Care Institute at the Icahn School of Medicine in New York City from 1997 to 2011.
Helen & Douglas House is a registered hospice charity based in Oxford, England, providing palliative, respite, end-of-life and bereavement care to life-limited children and their families.
In 2006, hospice and palliative medicine was officially recognized by the American Board of Medical Specialties, and is co-sponsored by the American Boards of
The Texas Advance Directives Act (1999), also known as the Texas Futile Care Law, describes certain provisions that are now Chapter 166 of the Texas Health & Safety Code. Controversy over these provisions mainly centers on Section 166.046, Subsection (e), which allows a health care facility to discontinue life-sustaining treatment ten days after giving written notice if the continuation of life-sustaining treatment is considered futile care by the treating medical team.
Children’s Hospices Across Scotland (CHAS) is a registered charity that provides the country's only hospice services for children and young people with life-shortening conditions, and services across children’s homes and hospitals. The first hospice was built thanks to the late editor-in chief of the Daily Record and Sunday Mail, Endell Laird, who launched a reader appeal which raised £4million. CHAS offers children’s hospice services, free of charge, to every child, young person and their families who needs and wants them.
The Medical institution "Children's Hospice" - is a non-profit institution of pediatric palliative care for minors under 18 years. The first children's hospice in Russia.
Together for Short Lives is the UK registered charity for children's palliative care. Together for Short Lives’ vision is for children and young people in the UK with life-limiting and life-threatening conditions and their families to have as fulfilling lives as possible, and the best care at the end of life.
