Overview Of Palliative Care: History, Principles, And Delivery

The History of Palliative Care

In the late eighteenth century, there was an increasing trend of doctors being around the time of death of members of upper and middle class families. This trend continued to grow as the nineteenth century advanced and new medical innovations were discovered and is now fairly common in recent times.

One of the earliest pioneers of palliative care is Mary Aikenhead (later known as Sister Mary Augustine). She opened St Vincent’s Hospital in 1834 to care for the sick and dying in Dublin, Ireland. By 1842, a bereaved mother by the name of Jeanne Garnier formed an association called L’Association des Dames du Calvaire in France, alongside other women in similar situations. This association later founded a home for the dying in the following year which had distinctive ‘respectful familiarity, an attitude of prayer and calm in the face of death’.

In 1885, the first home for the dying in Britain called Friedenheim was founded by Aberdeenshire-born France Davidson who moved to London to work for the Mildmay Mission Hospital; the home catered to needs of tuberculosis patients.

The beginning of the 20th century saw an increase in medical research and development and in the 1950s, three significant end-of-life surveys were carried out. In 1952, a survey of district nurses in United Kingdom was carried out by the Marie Curie Memorial Foundation and its results showed the dreadful situation of suffering amongst terminally ill cancer patients nursed at home. The results of the survey later led the Foundation to transition its nursing homes to specialist palliative care centres in the 1980s. By 1960, a report based on a nationwide survey in United Kingdom between 1957 and 1959 was published by Glyn Hughes for the Gulbenkian Foundation. While the report of this survey was attentive to the social conditions of the terminally ill, it gave greater importance to other matters pertaining policy and service organisation. The third survey was conducted between 1959 and 1961 by Dr John Hinton. The report of this survey highlighted the physical and mental distress of the dying and was published in 1963.

The turning point for palliative care was in 1967 when Cicely Saunders founded St. Christopher’s Hospice. The establishment of this foundation was a result of her medical research and experience while working at St Joseph’s Hospice. Saunders also developed the concept of total pain as a cumulative of physical, emotional, spiritual and social needs and advocated for the use of analgesia to manage pain in the dying. Saunders’ work and research caused a kaleidoscope of effects which paved the way for the development and evolution of palliative care all over the world. Cicely Saunders is credited with being the founder of palliative care however, the term ‘palliative care’ was first coined in 1974 by Balfour Mount.

The Principles of Palliative Care

WHO (2018) defines palliative care as the process of caring for a patient that focuses on improving the quality of life of the patient and their families dealing with difficulties associated with life-threatening illness, using early identification and assessment of physical, emotional, social and spiritual pain in order to prevent and relieve suffering of the patient but at the same time keeping the concept of total pain central to the focus of the treatment. García-Baquero (2018) supports this view and emphasises that palliative care and treatments options be provided by a special interdisciplinary and multiprofessional team for not just dying patients but also people with incurable, life-limiting conditions, such as HIV/AIDS, chronic disorders or progressive neurological disorders, regardless of their age, sexual orientation, gender, race, ability to pay or where they reside. The American Society of Clinical Oncology is also in support of early intervention and has developed new guidelines that advocate for the incorporation of palliative care early in disease trajectory.

Abdulaziz and Zahid (2018) believe that the primary focus of palliative care should not be to find a cure for a patient’s condition but to manage the symptoms and relieve the patient’s pain as well as improve the quality of living for not just the patients but also their families. Teoli and Kalish (2019) reinforces this opinion by stating that palliative care as field should have its central focus on symptoms management and can be provided alongside curative care. Teoli and Kalish (2019) also believe that palliative care should be carried out in such a way that ensures the patient’s values and treatment preferences are aligned while also providing support for the families by paying attention to their concerns and providing consolation during bereavement.

According to the Department of Health (2008) NHS policy requires that healthcare professionals take the patient’s choices and preferences into consideration and facilitate them while also providing round the clock community care, free social care should also be provided at the end of life.

Effective palliative care has to not only address the physical aspect of a patient’s condition or pain but also consider the psychological, social and spiritual facets in a manner that is not just holistic and multidimensional but also patient-centred and comprehensive.

Delivery of Palliative Care

Palliative care can occur in diverse settings ranging from community homes to in-patient setting. This is illustrated by a survey carried out by the Office for National Statistics (2018) which recorded an annual death of 500,000 people in England and Wales, out of which 23.6% occurred at home, 22.0% in care homes, 46.6% in hospitals and 5.6% in hospices. Palliative care is usually provide by multidisciplinary teams which are usually made up of physicians, community nurses, social workers and sometimes professionals from other fields such as occupational therapists, physiotherapists as well as chaplains. According to Unroe and Meier (2012) this multidisciplinary team functions to provide support for patients and their families in times of crisis while also using their expertise to develop safe plans for transitioning the patients across different interface of care.

Some of the factors which generally hinder the accessibility of palliative care includes: finite number of palliative care specialists, inadequate funds, and poor education of general practitioners on palliative care and remoteness of the patient’s location. When compared to developed countries, the delivery of palliative care in less developed countries is usually met by administrative barriers especially with respects to the access of opioids and adjuvant analgesics which are important tools for effective pain management in palliative care.

The growth of the world’s ageing population and the increased global incidence of life-limiting conditions requires that palliative care evolve in order to effectively cater to these needs. Recognising this, the United Nations (1948) states that receiving palliative care is part of a person’s human rights and is protected by the international human rights law which claims that healthcare systems are obligated to provide palliative care services. WHO (2014) has also released a resolution, urging its member states to ensure that palliative care is incorporated across all levels of national healthcare systems particularly in primary, community and home-based care. Despite this increasing need for palliative care, Hawley (2017) reports that many patients often do not receive this care at all or it is only administered to them when they at the end-of-life stage even though the benefits of palliative care early in disease trajectory has been established. When attempting to improve the quality of palliative care across various healthcare settings, the Gold Standards Framework is a very useful tool.

References

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