Definition and History of Palliative Care
Palliative care supports the quality of life of patients and their loved ones in situations without the possibility of complete cure, which may be life-threatening. It includes all measures of care, psychological, social, and spiritual support useful for preventing and relieving symptoms and suffering. It encourages patients to make choices in order to anticipate complex end-of-life issues.
WHO Definition:
Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death.
Palliative care is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals.
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.
Pain and difficulty in breathing are two of the most frequent and serious symptoms experienced by patients in need of palliative care. For example, 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives. Opioids are essential for managing pain.
Opioids can also alleviate other common distressing physical symptoms including breathlessness. Controlling such symptoms at an early stage is an ethical duty to relieve suffering and to respect a person’s dignity.
- Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.
- Each year, an estimated 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care.
- Worldwide, only about 14% of people who need palliative care currently receive it.
- Unnecessarily restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate palliative care.
- Adequate national policies, programmes, resources, and training on palliative care among health professionals are urgently needed in order to improve access.
- The global need for palliative care will continue to grow as a result of the ageing of populations and the rising burden of noncommunicable diseases and some communicable diseases.
- Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services.
- Palliative care involves a range of services delivered by a range of professionals that all have equally important roles to play – including physicians, nursing, support workers, paramedics, pharmacists, physiotherapists and volunteers –– in support of the patient and their family.
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International History
In 1842, Jeanne Garnier established the “Oeuvres des Dames du Calvaire” in Lyon to welcome incurable patients. More than thirty years later, this organization was founded in Paris, evolving into the Jeanne Garnier Medical House, which is now the largest palliative care facility in France.
Dame Cicely Saunders, who was successively a nurse, social worker, and physician, holds a special place in the history of palliative care. She developed pain management protocols and studied the use of oral morphine. She also introduced the concept of “total pain,” which encompasses not only physical pain but also the psychological, social, and spiritual suffering experienced by patients at the end of life. In 1967, she founded St Christopher’s Hospice in the suburbs of London, establishing an interdisciplinary team where healthcare professionals, volunteers, and chaplains work together to care for patients and their families. St Christopher’s remains a leading institution with international influence.
Dr. Elisabeth Kübler-Ross, a Swiss-American psychiatrist, taught us about the stages of grief. The term “palliative care” dates back to Professor Balfour Mount, who founded the first palliative care unit in an academic hospital setting at the Royal Victoria Hospital in Montreal in 1974. Subsequently, other centers emerged in the United States, Canada, and worldwide.
The year 1988 saw the founding of the European Association for Palliative Care, as well as the Swiss Society for Palliative Medicine, which became the Swiss Society for Palliative Medicine and Care in 1995, and later simply Palliative.ch in 2006.
The first European Congress of Palliative Care took place in Paris in 1990.
History in Geneva
1970: Under the leadership of Rosette Poletti, palliative care is taught to nurses.
1986: The first pain and palliative care consultation service is established in Geneva.
1982: Development of palliative care at CESCO by Prof. Rapin.
1987: Under the direction of Prof. Rapin, 13 palliative care beds are created at CESCO, Unit 40, recognized as a reference Center for palliative care by the WHO in 1989.
Autumn 1993: The Geneva Palliative Care Association is founded at the instigation of a multidisciplinary working group and the Department of Health. The first committee, chaired by Dr. Philippe Schaller, was composed of practicing physicians: Dr. Roland Weil, Dr. Eric Bierens-de-Haan, Dr. Nathalie Steiner, coordinating physician at the EMSP, Dr. Charles-Henri Rapin (acting chief physician at the Geriatric Polyclinic), Prof. Hans Stalder (chief physician at the Polyclinic of Medicine); nurses: Ms. Verena Luchsinger, Karen Pasquettaz, and Madeline Bory (CSI), Ms. Maïte Busslinger (SASCOM, future IMAD); and pharmacists: Ms. Anne-Lise Vodoz (SOS Pharmaciens) and Ms. Cosette Odier (chaplain at CESCO).
In 1993, on behalf of the Department of Health, the AGSP set up the first mobile community palliative care team under the leadership of Dr. Nathalie Steiner (until 1999) in association with nurses from the CSI. In 1994, the EMSP hired a nurse coordinator. In June 1995, a second nurse coordinator joined the team. In January 2000, following a political decision, the EMSP was attached to the HUG for doctors and to the FSASD (later IMAD) for nurses, becoming the EMSPc (community-based).
1996: The association became the AGMSP (Geneva Association for Palliative Medicine and Care) by joining the Swiss Society for Palliative Medicine and Care, created in 1988.
1999: The “Rougemont” commission is mandated by the Department of Social Action and Health (DASS) to assess the current situation of palliative care and propose a coordinated cantonal program. This leads to the creation of mobile intra-hospital palliative care teams.
2000: The Geneva Palliative Care Network Coordination Committee is created (note: this committee was dissolved in April 2011 to make way for the support group for the 2012-2014 Geneva cantonal palliative care development program).
2007: The Geneva University Hospitals open a 32-bed palliative care unit at CESCO, which will soon be renamed Hôpital de Bellerive.
2011: Maison de Tara, a secular, non-profit foundation recognized as a public utility, opens its doors. This innovative structure in Switzerland offers an alternative to hospitalization for people at the end of life.
2012: Creation of the geriatric and palliative care unit (UGSPC) as part of the 2012-2014 cantonal palliative care program, a collaboration between the HUG and the FSASD under the direction of Dr. S. Pautex.
March 8, 2012: AGMSP becomes palliative genève to reflect the name change of its umbrella organization, which became palliative-ch in 2006. The Association is a collective member of the Swiss Society for Palliative Medicine and Care (Palliative-ch) within the meaning of Article 7 of the Palliative-ch statutes. The Association represents Palliative-ch at the cantonal level in Geneva, where it constitutes the regional section within the meaning of Article 18 of the Palliative-ch statutes.
One of the members of its Committee represents the Association on the Palliative-ch sections council.
2018: Creation of the Palliative Care and Supportive Care Center; creation of the Palliative Medicine Department.
2020-2023: Geneva cantonal program for the development of palliative care, with the creation in 2020 of a new inter-institutional team called CoSPa dom (home palliative care consultation).