The first hospices probably began in the eleventh century. From the Latin hospes, meaning “hospitality”, they were buildings that gave shelter to pilgrims. They were also places established by the Crusaders for treatment of the incurably ill. In the fourteenth century, a hospice in Rhodes provided refuge for travelers and cared for the ill and dying. Hospices were fewer after the Middle Ages when religious orders were dispersed. After the Reformation the original hospices became hospitals and were used to tend the dying.
Religious communities were instrumental in continuing the movement. These included the Daughters of Charity in seventeenth century France; the Servants for Relief of Incurable Cancer, who opened seven hospices in the USA; and the Anglican Church, which began a hospice in Sydney, Australia in 1907. The Religious Sisters of Charity opened Our Lady’s Hospice in Dublin in 1879. As many as twenty thousand people, mainly with tuberculosis and cancer, arrived there before 1945. The Sisters of Charity opened St. Joseph’s Hospice in London in 1905 as well as three in Australia. Others opened facilities in Australia and the UK, such as the Friedenheim in London, which offered thirty-five beds to people dying of tuberculosis.
The modern hospice movement began in London in the 1950’s with Dame Cicely Saunders. She volunteered at Saint Luke’s Home for the dying poor, where medicines for pain were given on a regular basis instead of only “as necessary”. She believed that terminally ill patients needed compassionate care to help address their concerns and palliative comfort for physical symptoms. She opened Saint Christopher’s Hospice in London in 1967. Research and training there led to the foundation of hospices and home care teams in the UK, US, Europe, Canada, the Far East, and Africa.
Using Hospice as a philosophy of compassionate holistic care, Saunders focussed on the patient rather than the disease and introduced the idea of “total pain”, including psychological, spiritual, and physical aspects. She experimented with a wide range of opioids to controlling physical pain and included the needs of the patient’s family. She discussed her philosophy in tours of the United States, where Florence Wald, the dean of Yale School of Nursing, heard Saunders speak. She worked with her in Saint Christopher’s and brought the principles of modern hospice care back to the United States, establishing Hospice, Inc. in 1971.
In 1965, Swiss psychiatrist Elisabeth Kübler-Ross began to consider the social responses to terminal illness. Her book, “On Death and Dying”, was influential on how the medical profession responded to the terminally ill. Kübler-Ross helped to focus attention on the types of care available.
In some places “hospice” came to mean a place where people who had no other means of support were sent to die. For hospice care to be recognized as a new specialty, the name “palliative care” was given. “Palliative”, from the Latin pall, meaning blanket or cover, embraces the care of the whole person. It is the care of people with chronic or terminal illness and their families, when the curative mode of therapy is no longer an option. The aim is to alleviate symptoms and distress, with particular emphasis on pain relief. With pain controlled, patients have space to make decisions and to make peace with themselves and God before they die. WHO recognizes that it is a human right for a person not to die in pain.
Hospice in Africa began in Zimbabwe in 1980, followed by South Africa in 1987 and Kenya in 1990. Dr. Anne Merriman founded Hospice Africa Uganda (HAU) in 1993 with the idea of serving patients in Uganda. It was intended to be a model for Hospice Africa, to encourage the development of Hospice in those countries that did not have the assistance of palliative medicine.
HAU is based at Kampala, with sites at Mbarara and Hoima. Hospice care in Uganda is supported by community volunteers and professionals. Makerere University offers a distance diploma in palliative care. The government of Uganda has a strategic plan for palliative care and permits nurses and clinical officers from HAU to prescribe morphine.
Palliative care is an urgent humanitarian need for people worldwide with cancer and other chronic diseases. It is particularly needed in places with a high proportion of patients in advanced stages where there is little chance of cure. This is the case for patients and their families in low-resource settings.
In 2008, the International Association for the Study of Pain stated that for the more than ten million people worldwide diagnosed with some form of cancer each year, pain associated with their condition is a serious concern.
*Information for this article was obtained from WHO, Hospice Uganda, National Association of Hospice Fundraisers, and the author’s own notes and personal experience of end-of-life care in Ethiopia.
**This article was first published in the MMM newsletter.
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