PCSBV VOLUNTEER TRAINING PROGRAM

MODULE 1: HISTORY OF HOSPICE

ANCIENT ROOTS OF HOSPICE

The Word Hospice comes from the Latin word hospitium meaning host and guest. It is the root of the word, hospitality, to extend welcome, to provide safe harbor.

In forth-century Rome the concept of hospice, as a place to care for the sick and dying, first came into being under the direction of Fabiola, a member of the Roman patrician class, who was well known in her day as a generous provider of the care and comfort of the sick and dying. Over the next several centuries the Roman Catholic Church continued to provide care to the poor and sick.

The rise of the Crusading movement in the 1090’s saw the incurably ill permitted into places dedicated to treatment by Crusaders. In the early 14th century, the order of the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes, meant to provide refuge for travelers and care for the ill and dying.

Hospices flourished in the Middle Ages, but then languished as religious orders became dispersed. They were revived in the 17th century in France by the Daughters of Charity of Saint Vincent de Paul. In 1842, the term “hospice” was used for the first time to identify a place to care for the chronically ill and dying in France, where Mme. Jeanne Gamier is credited with establishing an institution dedicated to the care of the dying. Soon after this, an order of nuns known as the Irish Sisters of Charity cared for the terminally ill. They started a hospice in Ireland in 1879.

Elsewhere in the United Kingdom attention was drawn to the needs of the terminally ill. In the middle of the 19th century the Lancet and the British Medical Journal published 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. By 1892 this facility 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).

Moving into the 20th Century

Dame Cicely Saunders

The creation of the “modern day Hospice” is credited to Dame Cicely Saunders (Dame indicates she has been knighted). In the 1950’s in England Dame Saunders realized that managing pain was not enough. She recognized that there were psycho/social and spiritual aspects of the dying process that needed to be addressed. She was told that if she wanted to do something about it she would have to become a physician and so she did. She obtained degrees in medicine and social work.

In 1967 she founded St. Christopher’s Hospice in London. The focus was on individuals in the final stages of life living in dignity and comfort. Her approach involved a marriage of disciplines: pain management, emotional and spiritual support, and family counselling. The care was delivered by a team of medical and nursing professionals as well as social workers and spiritual counsellors.

St. Christopher's Hospice, London England

In 1969 Dame Cicely pioneered the first home-care team taking St Christopher’s care and philosophy out into the community.

“Dame Cicely Saunders Describes the Principles of Palliative Care”

Please watch this short video featuring Dame Saunders.

This video clip is 11 minutes in length.

Moving into the 20th Century Continued

(click on the pictures below for more information)

Dr. Balfour Mount:

In Canada the approach has been slightly different. In 1975, a palliative care unit was opened at the St. Boniface Hospital in Winnipeg and weeks later a similar palliative care unit was opened at the Royal Victoria Hospital in Montreal.

St. Boniface Hospital, Winnipeg

Dr. Balfour Mount, a pioneer in hospice/palliative care in Canada, used the words “palliative care” rather than the word “hospice” because from the history of early lower Canada the word “hospice” in Quebec was commonly considered a place of last resort for the poor or derelict.

The word “palliative” comes from the Latin meaning “to cover or cloak, as in to care for”.

Royal Victoria Hospital, Montreal

As a result, the terms have been used interchangeably across Canada. This can be particularly confusing when we speak of the “Palliative Team” referring to the medical professionals, there may be an assumption that Hospice is involved or when we refer to a palliative unit or room in a hospice which may or may not be associated with Hospice.

FLORENCE WALD

In the USA, the Dean of the Yale School of Nursing, Florence Wald, was strongly influenced by a speech that Saunders gave in the US. In 1968 Wald left Yale to work at St. Christopher’s and learn the Hospice model. In 1974 Wald along with 2 physicians, founded Connecticut Hospice in Branford. One of the most important developments in expanding access to quality end-of-life care in the US was the passage of the Medicare Hospice Benefit in 1982, through which hospices receive federal funds for the care they give to eligible patients. With this legislation, the federal government essentially declared that hospice care was so important in relieving suffering and in bringing about a peaceful and meaningful closure to life, that every citizen was entitled to it, regardless of ability to pay.

DEFINING HOSPICE CARE

The Palliative Care Foundation in Toronto released an official definition of hospice palliative care in 1981, stating that “Palliative care is active compassionate care of the terminally ill at a time when they are no longer responsive to traditional treatment aimed at cure and prolongation of life, and when the control of symptoms, physical and emotional, is paramount. It is multidisciplinary in its approach and encompasses the patient, the family and the community in its scope.” Two years later, the University of Ottawa created Canada’s first University Institute for research and education in palliative care.

The Canadian Palliative Care Association was established in November 1991 and opened its first office in Ottawa in February 1994. The organization later changed its name to the Canadian Hospice Palliative Care Association (CHPCA) due to hospice care and palliative care no longer being recognized as separate entities.

Community based hospice palliative care: This program does not have a facility of its own, other than an office. The program centers around the client, whether he/she is in the home or in a health facility, using a multi-discipline team approach to provide physical, emotional and spiritual support for the client and the family.
Hospital-based Ward: This is a unit, floor or wing within the hospital specifically allocated for the terminally ill patient to die in, if he/she so chooses; for symptom management and for respite. It may have a totally independent staff or have staff members who rotate from the main floor.
Hospital-based team. This team has no designated place in the hospital but there will be a specific number of designated beds scattered throughout the hospital to be used for palliative patients. Patient care is given by the regular staff on that area, and the team sees the patient on a daily basis, making suggestions for care as they assess the need.
Hospice Bed: This is a bed designated in a location outside of a hospital (such as a room in a long-term care center). The multidisciplinary team used for the community base is utilized here as well.
Free-standing hospice: The free-standing hospice is housed in its own building and served by a multidisciplinary team.

MOVIE NIGHT ASSIGNMENT

Make a big bowl of popcorn (or your favorite snack) and settle in for a great movie.

The following is a list of movies with grief/end-of-life care themes.

Choose at least one (watch as many as you have time for) and share your reactions and thoughts in a brief email to the PCSBV Grief and Loss Navigator (bill.harder@pcsbv.juiceware.io)

Movies: (Click on the links below to view trailers and movie information)

Away From Her Trailer Available on Amazon Prime or from the Canmore Public Library (DVD)
Still Mine Trailer Available on iTunes or from the Canmore Public Library
Griefwalker Trailer Available from the National Film Board - Free streaming
Solace Trailer Available from HSCD library
End Game Trailer Available on Netflix
How to Die in Oregon Trailer Available on iTunes
Guzaarish Trailer Available on Netflix (subtitles)

“We love films because they make us feel something.

They speak to our desires, which are never small.

They allow us to escape and to dream
and to gaze into the eyes that are impossibly beautiful and huge.

They fill us with longing.”

(Nina LaCour, Everything Leads to You)

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