Hospices- uma realidade bem britanica, um exemplo a seguir - Nuno Pinto
Do Latim "hospitium" ou casa de acolhimento, os "hospices" tiveram a sua origem enquanto casas de acolhimento para peregrinos doentes ou fatigados das suas viagens, estando por isso espalhados um pouco por toda a Europa onde locais de peregrinacao foram nascendo - Santiago de Compostela, Roma ou Canterbury sao disso exemplo. Nos anos 60, em Londres, a Dr. Cicely Saunders deu inicio aos movimento dos que sao agora os "novos hospices" atraves da criacao do "St. Christopher's Hospice" perto de Londres. Entre outras coisas, esta iniciativa apresentava uma nova abordagem multidisciplinar ao tratamento dos doentes terminais e/ou cronicos bem como a utilizacao de modernas formas de tratamento da dor enquanto modo de aliviar o sofrimento daqueles na fase final da sua vida.
No decurso do meu percurso profissional tive ja a oportunidade de visitar alguns destes "hospices" tanto para adultos como para criancas, tendo sempre saido com a imagem de um local de grande serenidade e carinho onde as pessoas sao tratadas de modo individualizado por profissionais verdadeiramente apaixonados pelo que fazem.
Deixo entao aqui mais alguma informacao sobre este movimento para os colegas interessados neste movimento e quem sabem, em trabalhar num destes locais!
No decurso do meu percurso profissional tive ja a oportunidade de visitar alguns destes "hospices" tanto para adultos como para criancas, tendo sempre saido com a imagem de um local de grande serenidade e carinho onde as pessoas sao tratadas de modo individualizado por profissionais verdadeiramente apaixonados pelo que fazem.
Deixo entao aqui mais alguma informacao sobre este movimento para os colegas interessados neste movimento e quem sabem, em trabalhar num destes locais!
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Global hospice care
The idea of caring for people at the end of life has been developed over thousands of years, across many different cultures. The development of modern palliative care from the 1960s onwards reflects the re-emergence of a holistic approach to caring, which takes account of people’s spiritual, social and psychological needs and aims to enhance their quality of life.
The term ‘hospice’, from which palliative care has developed, was initially used in the 19th century by a French woman, Madame Jeanne Garnier, who first applied the word ‘Hospice’ to describe a place for the dying. In 1842, she founded the Dames du Calvaire in south east France and subsequently opened their first hospice for the dying in Lyons in 1843.
In the UK
One of the founders of modern palliative care in the United Kingdom, Dr Cicely Saunders, acquired much of her experience and knowledge through working and carrying out research developing pain treatment observed at St Joseph’s Hospice in London.
The first modern hospice was founded by Dr Saunders in 1967 - St Christopher’s Hospice in London began the practice of what has now been termed ‘palliative medicine’. In 1969 St Christopher’s pioneered the concept of community-based hospice or palliative care.
Day care was included as part of palliative care and the first purpose built day care facility was built by St Luke’s Hospice, Sheffield in 1975. The first hospital based palliative care team was founded by St Thomas’ Hospital, London in 1977. Children’s hospices started with the founding of Helen House in Oxford in 1982.
In the US
In the USA there were 516 hospices just 10 years after the foundation of the first initiative in New Haven, which had opened in 1974.
Even more significant was the creation of a federal benefit in 1982 under Medicare for patients with terminal disease and a prognosis of six months. The legislation proved a stimulus to not-for-profit and commercial hospices. By the end of the twentieth century, around 3,000 hospice organisations were operating in the USA.
Beyond the UK and US
Elsewhere, the potential for development varied enormously. In Central and Eastern Europe, for example, there was little opportunity for hospice initiatives until communism began to break down. In Kracow an informal society was first formed to support hospice developments in 1981, the year martial law was imposed. In Russia, the first hospice was opened in St Petersburg in 1992, with the support of the émigré journalist Viktor Zorza, who established Russian links with supporters in the UK in the wake of the new era of glasnost. The Island Hospice, which began in Zimbabwe in 1979, is thought to be the first to be established in a developing country.
In several countries, such as India, the first hospices were modelled quite explicitly upon St Christopher's, but local variation was also common.
The History
The nineteenth century
In the nineteenth century there was a great expansion in hospital building. This, in turn, reduced concern for those at the end of life whose condition was incurable and who might be viewed as medical 'failures'.
As the dying became less welcome in hospitals, philanthropic and charitable endeavours set up special institutions, some of them called hospices, to provide care and sanctuary to those nearing death.
Women working for the dyiing
From the beginning of the nineteenth century, there were a number of important developments in the care of dying people, several of which were led by women including Jeanne Garnier in France, Mary Aikenhead in Ireland and Rose Hawthorne in the US.
Jeanne Garnier In 1842 a young widow and bereaved mother, Jeanne Garnier, formed L'Association des Dames du Calvaire in Lyon. The following year the organisation opened a home for the dying. Garnier's influence led to the founding of six other establishments for the care of the dying between 1874, in Paris, and 1899, in New York. In both of these cities modern, palliative care services now exist which originate directly from their work.
As Superior of the Irish Sisters of Charity, Mary Aikenhead was instrumental in the opening of St Vincent's Hospital in Dublin in 1834. After many years of chronic illness, Mary died at nearby Harold's Cross in 1858. Fulfilling a long-held ambition, the convent where she spent her final years became Our Lady's Hospice for the Dying in 1879. The Sisters of Charity followed it with others in Australia, England and Scotland, all of which still exist today and are run by the Order as modern, palliative care units.
Rose Hawthorne had experienced the death of a child and watched her friend, the poet Emma Lazarus, dying of cancer. During the late 1890s she organised a group of women known as the Servants of Relief of Incurable Cancer and when her husband died she took religious orders. In 1900, under the title Mother Alphonsa, she formed the Dominican Sisters of Hawthorne. They established St Rose's Hospice in Lower Manhattan and then another in New York. These were followed by others in Philadelphia, Fall River, Atlanta, St Paul and Cleveland.
A common purpose
Although unknown to each other, Jeanne Garnier, Mary Aikenhead and Rose Hawthorne shared a common purpose in their concern for the care of the dying, and in particular the dying poor. Although the places they founded did not offer sophisticated medical or nursing care, they created some of the conditions for the development of modern hospices. The early homes for the dying were rooted in religious and philanthropic concerns, which would diminish during the twentieth century. Yet they set the foundations for a period of development which gathered momentum after the Second World War.
The work of Cicely Saunders
Through her work, Cicely Saunders forged a peculiarly modern philosophy of terminal care. She developed this first at St Joseph's Hospice in Hackney, East London.
Addressing every aspect of pain
By listening carefully to patients' stories of illness, disease and suffering, Saunders evolved the concept of 'total pain'. This view of pain moved beyond the physical to encompass social, emotional and even spiritual aspects of suffering. She linked this to a hard-headed approach to pain management in which her message was simple: constant pain needs constant control. Analgesics were to be given regularly to prevent pain, rather than alleviate it; and they should be used progressively, from mild, to moderate, to strong.
St Christopher's Hospice
When Cicely Saunders founded St Christopher's Hospice in South London in 1967, it quickly became a source of inspiration to others. As the first 'modern' hospice, it sought to combine three key principles - excellent clinical care, education and research - making it significantly different from earlier homes for the dying. It also sought to establish itself as a centre of excellence in a new field of care. St Christopher's Hospice's success was phenomenal. It soon became the stimulus for an expansive phase of hospice development in Britain and around the world.
Care beyond hospices
From the outset, ideas developed at St Christopher's were applied differently in other settings. Within a decade it was accepted that the principles of hospice care could be practised in many settings; not just in specialist inpatient units, but also in home care and day care services. Hospital units and support teams were established that brought the new thinking about dying into the heartland of acute medicine.
The end of the beginning
Within the professional lifetime of the founders of the modern hospice movement, there has been a remarkable growth in hospices. At the same time, the definition of hospice and palliative care has come into sharper focus. Debates and discussions about the future of palliative care are preoccupied with many of the wider questions relating to the work of modern healthcare systems.
A social movement
Initially, modern hospice and palliative care in the West had many of the qualities of a social movement supported by wider forces:
The movement may well have contributed to a new openness about death and bereavement that has been in evidence since the late twentieth century. Inspired by charismatic leadership, it is a movement that has:
Indeed, for Cicely Saunders and her followers, such work serves as a measure of the worth of our culture.
Palliative care as a speciality
At the same time other interests were at work. In several countries (Britain, Australia, Canada and the US) professional recognition of this emerging area of expertise seemed desirable. Recognition of the speciality of palliative medicine first occurred in the UK in 1987. This was seen by some as a turning point in hospice history. It was part of a wider shift away from 'terminal' and 'hospice' care towards the concept of palliative care.
Modernisers claim that specialisation, the integration of palliative care into the mainstream health system and the development of an 'evidence-based' model of practice and organisation are crucial to long-term viability. Others mourn the loss of early ideals. They also regret what they perceive to be an emphasis upon physical symptoms at the expense of psychosocial and spiritual concerns.
Care earlier and for all
By the end of the twentieth century, however, a growing commitment to a model based on evidence was emerging. Two forces for expansion were also clearly visible. First was the impetus to move palliative care to an earlier point in the progression of the disease, thereby integrating it with curative and rehabilitation therapies and shifting the focus beyond terminal care and the final stages of life. Second, there was a growing interest in extending the benefits of palliative care to those with diseases other than cancer, in order to make 'palliative care for all' a reality. The new specialty was therefore delicately poised. For some, such integration with the wider system was essential for success; for others it has marked the entry into a risky phase of new development in which early ideals might be compromised.
As hospice and palliative care continues to evolve, the hope remains that the benefits of a model of care previously available to just a few people at the end of life will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or means.
Mais informacao
http://www.helpthehospices.org.uk/about-hospice-care/what-is-hospice-care/hospice-history/the-end-of-the-beginning/
Worldwide Palliative Care Alliance (www.thewpca.org)
International Association for Hospice and Palliative Care (www.hospicecare.com)
International Children’s Palliative Care Network (www.icpcn.org.uk).
A global update 2011 www.thewpca.org/resources).
The idea of caring for people at the end of life has been developed over thousands of years, across many different cultures. The development of modern palliative care from the 1960s onwards reflects the re-emergence of a holistic approach to caring, which takes account of people’s spiritual, social and psychological needs and aims to enhance their quality of life.
The term ‘hospice’, from which palliative care has developed, was initially used in the 19th century by a French woman, Madame Jeanne Garnier, who first applied the word ‘Hospice’ to describe a place for the dying. In 1842, she founded the Dames du Calvaire in south east France and subsequently opened their first hospice for the dying in Lyons in 1843.
In the UK
One of the founders of modern palliative care in the United Kingdom, Dr Cicely Saunders, acquired much of her experience and knowledge through working and carrying out research developing pain treatment observed at St Joseph’s Hospice in London.
The first modern hospice was founded by Dr Saunders in 1967 - St Christopher’s Hospice in London began the practice of what has now been termed ‘palliative medicine’. In 1969 St Christopher’s pioneered the concept of community-based hospice or palliative care.
Day care was included as part of palliative care and the first purpose built day care facility was built by St Luke’s Hospice, Sheffield in 1975. The first hospital based palliative care team was founded by St Thomas’ Hospital, London in 1977. Children’s hospices started with the founding of Helen House in Oxford in 1982.
In the US
In the USA there were 516 hospices just 10 years after the foundation of the first initiative in New Haven, which had opened in 1974.
Even more significant was the creation of a federal benefit in 1982 under Medicare for patients with terminal disease and a prognosis of six months. The legislation proved a stimulus to not-for-profit and commercial hospices. By the end of the twentieth century, around 3,000 hospice organisations were operating in the USA.
Beyond the UK and US
Elsewhere, the potential for development varied enormously. In Central and Eastern Europe, for example, there was little opportunity for hospice initiatives until communism began to break down. In Kracow an informal society was first formed to support hospice developments in 1981, the year martial law was imposed. In Russia, the first hospice was opened in St Petersburg in 1992, with the support of the émigré journalist Viktor Zorza, who established Russian links with supporters in the UK in the wake of the new era of glasnost. The Island Hospice, which began in Zimbabwe in 1979, is thought to be the first to be established in a developing country.
In several countries, such as India, the first hospices were modelled quite explicitly upon St Christopher's, but local variation was also common.
The History
The nineteenth century
In the nineteenth century there was a great expansion in hospital building. This, in turn, reduced concern for those at the end of life whose condition was incurable and who might be viewed as medical 'failures'.
As the dying became less welcome in hospitals, philanthropic and charitable endeavours set up special institutions, some of them called hospices, to provide care and sanctuary to those nearing death.
Women working for the dyiing
From the beginning of the nineteenth century, there were a number of important developments in the care of dying people, several of which were led by women including Jeanne Garnier in France, Mary Aikenhead in Ireland and Rose Hawthorne in the US.
Jeanne Garnier In 1842 a young widow and bereaved mother, Jeanne Garnier, formed L'Association des Dames du Calvaire in Lyon. The following year the organisation opened a home for the dying. Garnier's influence led to the founding of six other establishments for the care of the dying between 1874, in Paris, and 1899, in New York. In both of these cities modern, palliative care services now exist which originate directly from their work.
As Superior of the Irish Sisters of Charity, Mary Aikenhead was instrumental in the opening of St Vincent's Hospital in Dublin in 1834. After many years of chronic illness, Mary died at nearby Harold's Cross in 1858. Fulfilling a long-held ambition, the convent where she spent her final years became Our Lady's Hospice for the Dying in 1879. The Sisters of Charity followed it with others in Australia, England and Scotland, all of which still exist today and are run by the Order as modern, palliative care units.
Rose Hawthorne had experienced the death of a child and watched her friend, the poet Emma Lazarus, dying of cancer. During the late 1890s she organised a group of women known as the Servants of Relief of Incurable Cancer and when her husband died she took religious orders. In 1900, under the title Mother Alphonsa, she formed the Dominican Sisters of Hawthorne. They established St Rose's Hospice in Lower Manhattan and then another in New York. These were followed by others in Philadelphia, Fall River, Atlanta, St Paul and Cleveland.
A common purpose
Although unknown to each other, Jeanne Garnier, Mary Aikenhead and Rose Hawthorne shared a common purpose in their concern for the care of the dying, and in particular the dying poor. Although the places they founded did not offer sophisticated medical or nursing care, they created some of the conditions for the development of modern hospices. The early homes for the dying were rooted in religious and philanthropic concerns, which would diminish during the twentieth century. Yet they set the foundations for a period of development which gathered momentum after the Second World War.
The work of Cicely Saunders
Through her work, Cicely Saunders forged a peculiarly modern philosophy of terminal care. She developed this first at St Joseph's Hospice in Hackney, East London.
Addressing every aspect of pain
By listening carefully to patients' stories of illness, disease and suffering, Saunders evolved the concept of 'total pain'. This view of pain moved beyond the physical to encompass social, emotional and even spiritual aspects of suffering. She linked this to a hard-headed approach to pain management in which her message was simple: constant pain needs constant control. Analgesics were to be given regularly to prevent pain, rather than alleviate it; and they should be used progressively, from mild, to moderate, to strong.
St Christopher's Hospice
When Cicely Saunders founded St Christopher's Hospice in South London in 1967, it quickly became a source of inspiration to others. As the first 'modern' hospice, it sought to combine three key principles - excellent clinical care, education and research - making it significantly different from earlier homes for the dying. It also sought to establish itself as a centre of excellence in a new field of care. St Christopher's Hospice's success was phenomenal. It soon became the stimulus for an expansive phase of hospice development in Britain and around the world.
Care beyond hospices
From the outset, ideas developed at St Christopher's were applied differently in other settings. Within a decade it was accepted that the principles of hospice care could be practised in many settings; not just in specialist inpatient units, but also in home care and day care services. Hospital units and support teams were established that brought the new thinking about dying into the heartland of acute medicine.
The end of the beginning
Within the professional lifetime of the founders of the modern hospice movement, there has been a remarkable growth in hospices. At the same time, the definition of hospice and palliative care has come into sharper focus. Debates and discussions about the future of palliative care are preoccupied with many of the wider questions relating to the work of modern healthcare systems.
A social movement
Initially, modern hospice and palliative care in the West had many of the qualities of a social movement supported by wider forces:
- consumerism and increasing discernment among the users of health and social care services
- demographic trends, which allowed substantial numbers of individuals to volunteer in local hospices
- greater affluence, which led to an increase in charitable giving.
The movement may well have contributed to a new openness about death and bereavement that has been in evidence since the late twentieth century. Inspired by charismatic leadership, it is a movement that has:
- condemned the neglect of the dying in society
- called for high quality pain and symptom management for all who needed it
- sought to reconstruct death as a natural phenomenon, rather than a clinical failure
- marshalled practical and moral argument to oppose those in favour of euthanasia.
Indeed, for Cicely Saunders and her followers, such work serves as a measure of the worth of our culture.
Palliative care as a speciality
At the same time other interests were at work. In several countries (Britain, Australia, Canada and the US) professional recognition of this emerging area of expertise seemed desirable. Recognition of the speciality of palliative medicine first occurred in the UK in 1987. This was seen by some as a turning point in hospice history. It was part of a wider shift away from 'terminal' and 'hospice' care towards the concept of palliative care.
Modernisers claim that specialisation, the integration of palliative care into the mainstream health system and the development of an 'evidence-based' model of practice and organisation are crucial to long-term viability. Others mourn the loss of early ideals. They also regret what they perceive to be an emphasis upon physical symptoms at the expense of psychosocial and spiritual concerns.
Care earlier and for all
By the end of the twentieth century, however, a growing commitment to a model based on evidence was emerging. Two forces for expansion were also clearly visible. First was the impetus to move palliative care to an earlier point in the progression of the disease, thereby integrating it with curative and rehabilitation therapies and shifting the focus beyond terminal care and the final stages of life. Second, there was a growing interest in extending the benefits of palliative care to those with diseases other than cancer, in order to make 'palliative care for all' a reality. The new specialty was therefore delicately poised. For some, such integration with the wider system was essential for success; for others it has marked the entry into a risky phase of new development in which early ideals might be compromised.
As hospice and palliative care continues to evolve, the hope remains that the benefits of a model of care previously available to just a few people at the end of life will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or means.
Mais informacao
http://www.helpthehospices.org.uk/about-hospice-care/what-is-hospice-care/hospice-history/the-end-of-the-beginning/
Worldwide Palliative Care Alliance (www.thewpca.org)
International Association for Hospice and Palliative Care (www.hospicecare.com)
International Children’s Palliative Care Network (www.icpcn.org.uk).
A global update 2011 www.thewpca.org/resources).