Blog author: Luc Deliens - Ghent University and Free University Brussels (VUB)

Palliative care is a multidisciplinary care approach and service-oriented answer to delivering better end-of-life care for people with cancer or other serious illnesses. In some countries, such as UK and USA, palliative care has now been part of the health care system for over 50 years. Dame Cicely Saunders initiated in 1967 hospice care as an interdisciplinary concept of care at St. Christopher’s Hospice in London. She is now acknowledged worldwide as one of the founders of the palliative care (PC) and hospice movement.

Palliative care services exist in many countries in the world and are increasingly integrated into the national health care services in hospitals, at home or in nursing homes. Despite these achievements, the palliative care movement continues to face challenges from demographic transitions (aging of our societies and increased life expectancy), and changing patterns of illness (chronic illness replacing acute illness). Today, many people with serious illness in the world still suffer from burdensome symptoms and are in need of quality palliative care. However, many have unmet needs. It is estimated that less than 20% of people in need of PC actually have access to PC. To improve access to palliative care as a core component of the health care system, in the last decade a public health approach has been developed complementary to the specialized palliative care services.

The proliferation of professionals in palliative care activities has also led to the societal development that in some countries local communities no longer feel confident to take care for the people of the community at the end of life. And this end of life in developed countries is becoming more and more a taboo subject, including the word palliative care.

One of the responses to these concerns has been to redefine how end-of-life care is understood. Rather than holding it as a medical issue, under the responsibility of professionals in medical and social care, it should be reframed as a social experience and people have to learn again to take care of each other when confronted with death, dying, serious illness and bereavement. This can and should be done in partnership with the professional palliative care services. This approach of working in partnership with communities is now named the new public health approach to end-of-life care. The Compassionate Community model has attracted most attention in this new public health approach to end-of-life care.

Compassionate Communities have been developed to work the 95% of time when there is no professional or health service contact. Even in hospitals it has been estimated that professionals are at the bedside of the patients in less than 10% of the residing time in hospital. In the remaining 90% of the time, people in the hospital are being taken care by their partner, children, parents, sibling, other members of the family, colleagues, friends or neighbors. Compassionate communities and compassionate cities recognize the central role that chronic ill health and mortality plays in the minds, behaviors and social meanings that people develop when confronted with experiences of serious illness, ageing, caregiving and loss. They complement the traditionally existing efforts of health promotion activities with health promotion activities related to serious illness, loss and bereavement. The practice approach is essentially the same – i.e. civic engagement and community development, public education, and changes to the social and policy environment. Compassionate communities are communities that squarely recognize the major but under-recognized, the least spoken about, and the most overlooked human experiences in all communities – serious illness, ageing, dying, caregiving and loss. Societies and policy makers need to recognize that these populations have also a right to health and wellbeing and have to develop strategies to address the additional morbidities (illnesses) and mortalities (deaths) that are consequences of the experiences of ageing, serious illness, caregiving or loss.

Compassionate communities are growing rapidly in recent years and the movement is now established in Australia, America, Canada, India, Taiwan, Belgium, Scotland, England, Germany, Spain, and Switzerland. All of these groups have in common that they actively work to promote the principles of public health palliative care. The Compassionate Communities Network is open to everyone who is interested in social approaches to end of life support and an international association Public Health Palliative Care International (https://phpci.info) was established to coordinate the international activities and organize international webinars on compassionate communities as well as every other year the PHPCI world congress. The last world conference took place in 2019 in the Blue Mountains near Sydney Australia, and the next 7th PHPCI conference will take place in the fall of 2022 in Bruges, Belgium. The city of Bruges has recently become the first Compassionate City in Belgium.

 

Luc Deliens, Prof of palliative Care Research, Ghent University and Vrije Universiteit Brussel (VUB) 
Head End-of-Life Care Research Group, and Chair of Reference Group on Public Health and Palliative Care of EAPC (European Association of Palliative Care)  

 

 

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