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.
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 for Palliative Medicine and Care was founded, alongside the establishment of a community-based mobile palliative care team. Subsequently, the Geneva University Hospitals developed a transversal palliative care project. In 1999, the “Rougemont” commission, mandated by the Department of Social Action and Health (DASS), was tasked with examining the status and functioning of structures involved in palliative care and proposing a coordinated cantonal program. This led to the creation of intra-hospital mobile palliative care teams. 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 Chair for Vaud-Geneva. At the same time, a new health law was approved. In 2007, the Geneva University Hospitals opened a palliative medicine service with 32 beds at CESCO, which was soon renamed Hôpital de Bellerive.
In 2011, the Maison de Tara, a secular non-profit foundation recognized as serving the public interest, opened its doors. This innovative facility in Switzerland offers an alternative to hospitalization for people at the end of life.