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:
Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
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 founded the “Oeuvres des Dames du Calvaire” in Lyon to care for incurably ill patients. Thirty years later, the same organization was created in Paris, which would become the Jeanne Garnier Medical House; today the largest palliative care unit in France.
Dame Cicely Saunders, who was successively a nurse, social worker, and doctor, holds a special place in the history of palliative care. She developed pain treatment protocols and studied the use of oral morphine. She also created the concept of “total pain”, which includes not only physical pain but also the psychological, social, and spiritual suffering of terminally ill patients. In 1967, she founded St Christopher’s Hospice in the suburbs of London with an interdisciplinary team in which healthcare professionals, volunteers, and clergy worked together to care for the sick person and their loved ones. St Christopher’s remains a reference center with international influence.
Dr. Elisabeth Kübler-Ross, an American psychiatrist of Swiss origin, taught us about the stages of grief. The term “palliative care” dates back to Prof. Balfour Mount, who founded the first palliative care unit in a university hospital setting at the Royal Victoria Hospital in Montreal in 1974. Then other centers appeared in the United States, Canada, and around the world.
The year 1988 saw the foundation 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 then simply palliative ch in 2006.
The first European Congress of Palliative Care took place in Paris in 1990.
Geneva History
In Geneva, the first pain and palliative care consultation was established in 1986, followed a year later by the creation of 13 palliative care beds at CESCO. In 1993, the Geneva Association of Palliative Medicine and Care was born with the creation of a community palliative care mobile team. Then the Geneva University Hospitals developed a transversal palliative care project. The “Rougemont” commission, mandated by the Department of Social Action and Health (DASS) in 1999, was entrusted with the mission of examining the status and functioning of structures involved in palliative care and proposing a coordinated cantonal program. Thus, intra-hospital palliative care mobile teams were created. In 2000, the Coordination Committee of the Geneva Palliative Care Network was established. A few years later, in 2006, the first Academic Chair in Palliative Care in Switzerland was created; the Leenaards Vaud-Geneva Chair. At the same time, a new health law was approved. And in 2007, the Geneva University Hospitals opened a palliative medicine service with 32 beds at CESCO, which shortly after changed its name to Bellerive Hospital.
In 2011, La Maison de Tara, a secular non-profit foundation recognized as being of public utility, opened its doors. This innovative structure in Switzerland offers an alternative to hospitalization for people at the end of life.