In the last decade, there has been a growing interest in the development of Compassionate Communities and Compassionate Cities (CCC) at the end of life. This movement is based on the World Health Organization’s Ottawa Charter [1
] and promotes the motivation of communities to take more responsibility in their healthcare improving the care of people at the end of life [2
]. From this public health approach three main models can be distinguished:
Models from the health services to the community (top-down approach).
Models from community participation through the development of actions and events that involve communities in the promotion of their health (bottom-up approach).
Models from organizations and community participation that ensure that population needs and desires are covered by the community’s impulse and offer tools and techniques to assess these needs and propose solutions.
CCC movement at the end of life was consolidated with the definition of Compassionate City Charter promoted by the Public Health and Palliative Care International (PHPCI Organization) that defines “Compassionate Cities as those that publicly recognize people at the end of life and their needs and are aware of the search and involvement of all the main sectors of the city to help through care and accompaniment to reduce the social, psychological and health impact of life’s difficult processes and situations, especially those related to disability, ageing, dependence, end of life, burden of caregivers, pain and loss of a loved one” [3
A Compassionate City [3
Has local health policies that recognize compassion as an ethical imperative.
Meets the special needs of elders, those living with life-threatening illnesses, and those living with loss.
Has a strong commitment to social and cultural differences.
Involves grief and palliative care services in local government policy and planning.
Offers its inhabitants access to a wider variety of supportive experiences, interactions and communication.
Promotes and celebrates reconciliation with indigenous peoples and memory of other important community losses.
Provides easy access to grief and palliative care services.
Through the Compassionate Communities approach:
Death, dying and bereavement would cease to be taboo subjects and would become more normalized within society.
People’s expectations of death and dying will change, as well as how death will be managed.
Palliative care will be re-oriented, supporting health and social care staff to work with the community in providing care to those at the end of life and their loved ones.
In the last years, several organizations from different countries (United Kingdom [4
], Scotland [5
], Ireland [6
], Austria [7
], India [8
], Canada [9
] Australia [10
], Colombia [11
] and Spain [12
]) have boosted the development of Compassionate Communities and Cities with different models.
These experiences, centered on Community-Based Palliative Care Models, provide an opportunity for palliative care to progress toward a new vision linked to public health and integrated care models.
At the end of life, compassion—defined as the ability to identify and understand the suffering of another person and the desire to alleviate it—also plays an important role for patients, families, networks of care and supportive care providers. It is part of the Palliative Care definition. Harnessing the power of compassion to aid those dying and support their loved ones could provide invaluable information on how to promote optimal levels of healthcare throughout the entire lifespan. In a recent review about compassion in palliative care [14
], an improvement in healthcare outcomes has been demonstrated related to the quadruple aim: improvement of patient’s experience, population health, self-care of professionals, healthcare provider’s satisfaction and reduction of healthcare costs. This evidence has motivated the design, development and nurturing of Compassionate Communities and Cities. This can enhance our collective ability to care for each other at the end of life [15
Despite this incipient movement, we have not found a systematic framework for the development of Compassionate Communities programs. There are no validated tools to measure the effectiveness of these programs and their impact on patients and their families’ well-being or the health systems.
We have reviewed the existing evidence related to the implementation models of Compassionate Communities and Cities at the end of life to identify their methodology and effectiveness assessment system. This systematic review was undertaken to answer the following research questions:
How many end of life Compassionate Communities and Cities development models exist?
What are their methods, processes and measures to allow the intervention assessment?
Could we compare different degrees of development of Compassionate Communities and Cities in different countries and organizations?
This review reflects the growing development of CCC that has been launched in recent years. The model described by Kellehear A [3
] has allowed these initiatives to be oriented towards the elements that characterize the development of a Compassionate City.
Recommendations and coalitions published about the development of CCC also reflects the empowerment of this movement from public health and palliative care policies in an integrative health-social-community care model [16
The eleven studies identified in Theme 1, “CCC development models”, describe actions from bottom up approach. They focus on social awareness, the need of training about end of life care and how to involve society for the creation of networks of care around people at the end of life. We would like to highlight the key elements for Compassionate Communities or Cities development models shared by several authors: social awareness and education programs on compassion and networks of care [4
], programs for training caregivers, neighborhood network in palliative care [20
] to provide home-based palliative care involving volunteers and the community and networks of care round people at the end of life initiatives with the implication of inner and outer networks, communities and service delivery organizations [17
]. Only two of these studies included samples related to palliative care (220 palliative care providers [4
] and 33 patients at the end of life [22
]). By the end of this review, there were very few intervention papers on CCC components, development or assessment.
Although these initiatives are well-described, we have not found studies that integrate global results of these processes and their application to a specific communities or cities. Viajy and Monin [44
] and Herrera et al. [15
] agree on the need of some key elements for proper CCC beginning and development: leadership, well defined coverage, annual work agenda, collaboration among institutions (from health, social and community areas); development of community intervention structures; community, volunteer and neighborhood’s networks activation; general population sensibilization and capacitation; assessment systems design; and mass media implication. Some of them have been already tested in a pilot program in Spain with good results [15
Following this premise, a specific method for the development of Compassionate Communities and Cities [12
] has been developed and is being extended and evaluated in several cities. These components mainly focus on the development of partnerships with the organizations (schools, companies, universities, etc.) and on the activities needed to improve awareness and train abilities to develop community networks around people at the end of life.
Studies in this review about Theme 2 “Evaluation models of Compassionate Communities and Cities” express the benefits of compassion and community involvement in improving patient care, family and network of care satisfaction. Although satisfaction can be a good beginning, other evaluation strategies have to be developed. Satisfaction is a soft assessment tool because it is seriously influenced by expectations, the time of assessment and the memories of the responders.
Intervention studies identified [28
] have demonstrated cost effectiveness on a sample of 400 patients (average cost of $
93,000 saved per year). Another Case study [45
] have begun to identify and incorporate cost-effective measures of CCC programs, as the community program of Frome whose cost benefits represent 5% of the total healthcare budget (nationally, emergency admissions account for nearly 20% of the healthcare budget).
The benefits of compassion programs can be assessed by their effects in an ethical decision-making process and ethical behaviors. An intervention performed on 251 preclinical medical students demonstrated the improvement of medical student’s competences in making more appropriate ethical decisions in end of life care [39
The indicators identified in this review have been classified in structure, process and results and oriented to the Charter of Compassion recommendations for the development of CCC [26
]. These allow us to confirm that it is appropriate to have a specific method in order to measure the evolution of different programs. We have not found in this review comparative studies of programs due to the lack of consensus on the measure of indicators.
Five studies have been found for Theme 3 about the use of specific tools and protocols for the development of interventions in the community.
Intervention models were analyzed using different measures in different settings: residents with advanced dementia [41
]. McLoughlin et al. [6
] and Walshe et al. [43
] carried out an intervention protocol to promote compassionate communities in end of life patients. On the other hand, Dewar and Cook [40
] carried out a leadership and culture of compassion program, after which the participants were able to detect their strengths.
These protocols have served as the basis for the development of new intervention proposals in different international contexts such as RedCuida’s protocol by Librada et al. [46
] which is being implemented among communities surrounding people with advanced disease and at the end of life.
When looking at these protocols we can observe that they are not comparable because they do not share aims and frameworks, but they do share some outcomes, such as quality of life, decrease in loneliness, increase of the number of care networks, decrease in the main carer burden that can offer only a general overview. We did not find any study comparing systematic compassion interventions vs ordinary care to assess compassion effectiveness in end of life care. Therefore, there is a lot of work to do.
Even this review offers interesting information on recommendations and an approach to CCC models, methods and assessment systems, the quality of this evidence is low or very low, according to GRADE system. Most of them are descriptive or proposal for future interventions. We did not find any study conducted with a representative sample and randomize methodology to offer better information about the benefits of this type of interventions. More research is needed to clarify and improve our knowledge.
Regarding the limitations, this review has been based on publications of scientific articles related to models for the development of Compassionate Communities and Cities at the end of life. As these are model publications, little evidence of application studies on specific populations is detected where the development of these interventions in the community is assessed. Reports or books, norms or monographs describing development experiences have not been included.
In addition, there is a lack of knowledge about the evolution of some of these programs. It is unknown whether they are pilot programs or are still ongoing. We have found further more descriptive studies and reviews that provide little evidence, compared to intervention studies. Most of the intervention studies have been carried out on small samples. Nevertheless, these results serve to guide models of these programs’ benefits; comparison among different initiatives developed are not comparable, due to the method used and the absence of quantitative results.
The lack of specific CCC development methods and evaluation models has not allowed us to make a comparative analysis. The need to work in this direction is reinforced.
No studies have been identified that demonstrate the opportunities or difficulties when launching projects of compassionate cities and communities. As it is an emerging movement, the experiences described should also go in this direction to guide other cities and organizations.