Compassionate Communities – An Approach to ICC

Historically, the role of caring for people at end-of-life was centred in the community. Advances in palliative care services have contributed to major improvements in medical care and quality of life at end-of-life. However, these advances have also resulted in a reduction in community involvement and skills in addressing serious illness and end-of-life care. While families continue to provide the vast majority of care for people at end-of-life, they often do so with limited or no support from their local community. As a result, people at end-of-life and their carers often experience isolation and fear of dying, with little awareness around death and how to manage loss.

There is a growing need to address the disconnect between end-of-life wishes and what happens in reality. Different surveys show that the vast majority of people (70-80%) would rather die at home, but most die in hospitals instead (70-80%). The increasing focus on the role of primary care, community services, and community settings for delivery is consistent with an increasing preference by people at end of life to die in their homes, whenever possible.

A huge barrier remains the taboo of discussing death, and the subsequent lack of communication with friends, family, and healthcare providers. Given the need for support throughout all aspects of end-of-life care, an emerging paradigm shift shows Compassionate Communities as a new standard for placing responsibility back in the community and promoting respectful and compassionate care. The development of Compassionate Communities promotes quality end-of-life care designed to meet the individualized needs of the dying as well as their caregivers.

There is a need 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.

Image courtesy of Pallium Canada

Compassionate Communities and Compassionate Cities recognise the central role that chronic ill health and mortality plays in the minds, behaviours and social cohesion of individuals and their communities. Currently CC approach is quickly being adopted by many places and cities around the world (e.g. Australia, America, Canada, India, Taiwan, Belgium, Scotland, England, Germany, Spain, and Switzerland), seeing an increased need to address the full cycle of life.

Compassionate Communities:

• complement the efforts of all health promotion through civic engagement and community development, public education, and changes to the social and policy environment
• acknowledge the major, but unspoken and often overlooked, human experience of serious illness, ageing, dying, caregiving and loss.
• leads with the idea that those undergoing such experiences have an equal right to health and well-being.

The above is translated into action by

• connecting people who are passionate and committed to enhancing the experiences of those dealing with a serious health challenge, caregiving, dying, or grieving.
• supporting people affected by these experiences through connecting people to support services and building supportive networks in the community.
• improving the quality of life for people with a life-limiting illness and their families by bringing awareness of the topic, joining efforts in addressing it together and providing assistance and practical support within communities.

When it comes to palliative care, the health care system is only part of the equation. Compassionate Communities respond to local community needs and empower individuals to provide important physical, emotional, social, spiritual, and practical support to patients, families, and caregivers.

The easiest way to conceptualise Compassionate Communities is to think about them in terms of two major components. The first is the naturally occurring supportive network that surround all of us. If we think about the people who are really close to us, we might count up to anywhere between two and 20, or even 50 people, depending on our life circumstances and our personalities. Our inner network will include family members, friends, neighbours or workplace colleagues. Our outer network is made up of people who we may count as friends or acquaintances and interact with informally. When we start to add up the numbers of people who make up our outer networks, this might be anything from 10 to 200 people or more.

The second component of Compassionate Communities is made up of the communities we live in. It consists of people we do not know directly but nevertheless surround us. We may identify these as a workplace community, a religious community, a sports club, schools, institutions and others within and beyond our neighbourhoods. These communities already exist. We do not need to create them.

Creation of new community resources (assets) comes from both listening to the community to see what is needed as well as making specific suggestions to meet identified needs. These are resources that are particularly useful to help meet the demands of caring for those who are undergoing the experiences of death, dying, loss and caregiving. It is vitally important to ensure that the principles of participatory development are used when building new community resources and capacities. Community development is best done by the community itself, rather than it being something done to a community. In addition, it is also important to make sure that dependency on professional services and finances is not built into anything that is started. If this happens, when the professional support or finances disappear, so does the community resource.

On the other hand, professional services can benefit substantially from embracing a Compassionate Communities (CC) approach. Bringing CC into routine clinical care expands the range of help that clinicians can give by connecting patients to the supportive network and services. The two major areas where clinicians can bring this into routine consultations are network enhancement and linkage to community resource through the use of a service directory.

Compassionate communities consist of naturally occurring supportive networks combined with the wealth of community resource to be found in neighbourhoods, workplaces, educational institutions or any place where people gather. Enhancing the compassionate activities of these groups and networks is an intentional act that is part of a compassionate community programme.  Activating these communities can bring immense benefit to the people involved, both those receiving and giving support. Professional health and social care services can work in union and harmony with compassionate communities. If they do so, they will have an enormous resource which will help the people they serve in ways not possible for professional services alone.

Compassionate Cities – dedicated to creating Compassionate Communities

Compassionate Cities are specific communities bounded by city borders and its governance bodies that publicly encourage, facilitate, support and celebrate care for one another during life’s most testing moments and experiences, especially those pertaining to life-threatening and life-limiting illness, chronic disability, frail ageing and dementia, grief and bereavement, and the trials and burdens of long-term care. Though local government always strives to maintain and strengthen quality services for the most fragile and vulnerable, serious personal crises of illness, dying, death and loss may happen to anyone at any time during the normal course our lives. A compassionate city is a community that recognizes and addresses this. While Compassionate Communities focus mostly on neighbourhoods, Compassionate Cities tend to be densely-populated urban organisations with complex and interlocking social sectors. Compassionate cities range from populations in the tens of thousands to those over one million in size and they employ different models of social organisation but all of them have a ‘steering committee’– a central body of people who meet on a regular basis to discuss plans to make their city an active contributor and participant in end of life care.

Compassionate Communities draw from the Compassionate City Charter, which describes 13 social changes to the key institutions and activities of cities to create a city which “publicly encourages, facilitates, supports and celebrates care for one another during life’s most testing moments and experiences, especially those pertaining to life-threatening and life-limiting illness, chronic disability, frail ageing and dementia, grief and bereavement, and the trials and burdens of long term care.”

Vision: A community where no person has to die alone, in pain or in distress

At a conference held in Plymouth (UK) in 2018, schools, places of worship, GP surgeries, solicitors and charities – and many other organisations and groups from across the community – called on the city to develop an End of Life (EoL) Compassionate City Network. The following vision[1] was agreed:

Plymouth will not shy away from the taboo subject of death, but talks openly about it, in order to create a city that is truly informed and compassionate towards those facing end of life or experiencing loss and bereavement.  

Now Plymouth has a thriving end of life network, with over 90 individuals and organisations signed up to work towards the key objectives of the EoL Compassionate City Charter which has been formally adopted by Plymouth City Council. Plymouth has been recognised by Public Health Palliative Care International (PHPCI) as being the first Compassionate City in England.

Plymouth is actively reviewing annually policies and guidelines in collaboration with:

• Schools and Colleges, seeking to ensure that children, young people and the wider school community who have dying parents/loved ones and who are experiencing loss and bereavement, feel supported by the school and their peers.
• Workplaces and Trade Unions, to promote compassionate employers throughout the city ensuring that all those who work in an organisation who are who experiencing loss; death and bereavement feel supported in their workplace.
• Places of Worship, ensuring that places of worship will have at least one dedicated group for end of life.
• Hospices and Nursing Homes, to ensure that the hospice can support the wider community to care for people at end of life.
• Museums and Art Galleries, to raise everyone’s awareness of death, dying, loss and bereavement issues. They will hold annual exhibitions on the experiences of ageing, dying, death, loss or care.

Plymouth is also dedicated to:

• City Wide Memorial Event, to host an annual peacetime memorial parade representing the major sectors of human loss outside military campaigns – cancer, motor neuron disease, AIDS, child loss, suicide survivors, animal companion loss, widowhood, industrial and vehicle accidents, the loss of emergency workers and all end of life care personnel.
• Incentive Schemes and Awards that share the learnings and experiences of others and promote best practice in compassionate acts throughout the city, taking the form of an annual award administered by a committee drawn from the end of life care sector. A Mayors Prize’ will recognise individual/s for that year who most exemplifies the city’s values of compassionate care for those at end of life.
• Promoting and Celebrating a Compassionate City by publicly showcasing, in print and in digital media, local government policies, services, funding opportunities, partnerships, and public events that address ‘our compassionate concerns’. All end of life care-related services within the city limits will be encouraged to distribute this material in print or digitally, including veterinarians and funeral organisations.
• Promoting Inclusive Policies and Practices: Equal Access for All, by creating inclusive end of life services and policies and by addressing inequalities of access to end of life care. This includes those individuals who are homeless, in prison, live in rural locations or who are from BAME (Black, Asian, Minority Ethnic), LGBTQ and Roma communities; and those with cognitive, frailty and sensory issues.
• Become a Compassionate Friend or Champion, by creating compassionate networks that work together, in communities, to support those who are dying or experiencing loss in emotional and practical ways.
• Establish a Compassionate City Steering Group, to ensure that the collective will across the city delivers the aims of the Compassionate City Charter for End of Life. This requires a coordinated effort from all sectors to improve the lives of those who are dying or experiencing loss, death and bereavement.

Practical Examples

• school pupils were being trained as Compassionate Buddies, through Forum Theatre – learning how to act and what not to do when someone is facing bereavement and grief Children that needs support, can receive a special bereavement card to provide them time out.
• A Compassionate Café is a community-led café offering support, company and a friendly ear from trained Compassionate Friends. If anyone feels as though they need someone to talk to, they can sit down, take one of the wooden spoons with well know starfish logo (logo of the compassionate city movement) and chat over a cup of tea and cake. Compassionate Friends aren’t there to give official advice, but they are there to support.
• Reaching out to hostels and homeless shelters to discuss supporting people wanting to end their life in these facilities, helping staff and informing homeless people about such a possibility, connecting with hospice staff and offering support.

COVID-19 experience in Plymouth Compassionate City:

Plymouth Compassionate City has had its challenges the Covid-19, including staff sickness and software issues in the community care system. However, by far the biggest challenge that was surmounted through the pandemic has been one of cultural change. Lay people proved to be willing to help and do the small things that make a big difference in people’s lives.

It became clear that education about how to use the voluntary sector is vital if the NHS Longer Term plan of service integration between statutory and voluntary services is to be truly realised. Using volunteers comes with inherent risks, but this does not mean that patients should be denied a service which will benefit them. Professionals need to feel more confident in managing risk and enabling patients to make informed choices about how they might re-engage with their communities to find support. Although the Covid-19 pandemic has been very challenging, it has highlighted to community nurses that the community has both the heart and the capacity to help and assist when called upon.

Post Covid-19 survey results show that community nurses as part of a multidisciplinary team feel more confident in referring to lay volunteers than they were prior to the pandemic’s outbreak. It is hoped that this will continue to grow as the Frailty model is rolled out to other primary care networks in the locality. This will ensure and those with severe frailty will be identified, and they will then be able to access the support and companionship of local volunteers in their communities.

As Compassionate Communities is an internationally recognised movement, it is difficult to pinpoint one governance model. CC UK is a network organisation, supporting a number of local initiatives, organisation and providing an overall guidance for anyone starting a local Compassionate Community or City in UK.

Compassionate Communities UK provide a variety of different services along the spectrum of chronic disease management, community engagement, and end of life care, including bereavement. This means to:

• Provide guidance and expertise through a consultancy service
• Provide education programmes on the public health approach to general health care and end of life care, including how to work with naturally occurring networks, build Compassionate Communities and run a civic programme such as implementation of the Compassionate City Charter
• Act as a source of guidance on policy formation at local, regional, national and international levels
• Formulate project plans for small, medium or large scale projects
• Oversee or run projects on the ground
• Formulate and provide expertise on programmes of evaluation, including reports
• Act as research partners

Local initiatives, such as Compassionate City Plymouth, are governed based on the framework and funding provided by the city. Programs run by hospices are funded from public and private funds, depending on local situation and set up.

Recommendations published about the development of Compassionate Communities and Cities (CCC) reflect on a number of things, including the empowerment of this movement from public health and palliative care policies in an integrative health-social-community care model.

The research towards Compassionate Communities and Cities development methods and evaluation models shows that there are not many, which makes it difficult to prepare a comparative analysis. From the evaluation and comparison perspective there is a need to develop the CC models and frameworks.

The key elements  that are common for CC approach and are comparable include: 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. These components mainly focus on the development of partnerships with the organisations (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.

Most common measure of the effectiveness of CC is satisfaction. As a primary measure it can be a good start, although other evaluation strategies have to be developed. Satisfaction is a soft assessment tool because it is significantly influenced by expectations, the time of assessment and the memories of the responders. A study from of a CCC example in US have demonstrated cost effectiveness on a sample of 400 patients (81% reduction in financial losses to the organization during 2006 for emergency and inpatient services provided to a specific sample from this population.). Another case study (Frome Compassionate) showed that while elsewhere healthcare cost increased by 21%, in Frome they fell by 21%. This represents 5% of the total healthcare budget (nationally, emergency admissions account for nearly 20% of the healthcare budget).

The benefits of compassion programmes can also be assessed by their effects in the way clinicians are taking decision and their behaviour. 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.

The ways of implementing Compassionate Communities and cities are following different protocols, hence making it very difficult to compare. Nonetheless 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.

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. The results of a systematic review showed that there is little evidence about CC development and assessment models. Few data on key elements for the CC development were found, highlighting the need to examine this further as a pathway to bringing CC to other cities and communities.

Evaluation methodology in the existing projects are mostly focus on local aspects. Existing evaluation models for CC interventions are based on systematic reviews. Carers’ satisfaction and carers’ opinions have been the most common assessment approach. No data on advance disease and end of life care interventions have been yet published.

Systemizing the processes will help emerging organizations and communities to develop Compassionate Communities and Cities and it will facilitate the assessment of its impact and effectiveness.

Compassionate Communities experience in UK

COVID-19 pandemic came with enormous challenges to accessing medical care. Normal end-of-life services have been significantly restricted in the United Kingdom, with only the most severely unwell being admitted to hospitals. There is a pressing need for a different kind of advanced care planning when, in the context of a fast moving infectious disease, there is little time for prolonged family or community discussion. The choice of place of care previously available may be denied, home or hospital, and neither may be one’s preferred place. One idea addressing this issue was a for the ready assemblage and stowage of “Wellbeing bags”, similarly to ‘emergency kits’ as they do in the United States for crisis preparedness (https://www.ready.gov/kit). They could contain important photographs, cell phones or iPads, precious personal items associated with loved ones that one can plan to hold.

In Wales, paramedics have received Serious Illness Communication skills training, so that they can feed into the advance care and planning. These patients and families who have not prepared their own go-bags can be made aware of their value, and then quickly prepare one, at the point of paramedic service.

Another impact of COVID on palliative care is the uptake of more digital solutions. In hospital and hospice settings, tablet computers have been set up for video messaging and streaming, so that even very unwell patients in isolation can interact with their loved ones and communities.

At the same time it must be acknowledged that digital video solutions will never have the same   that face-to-face interactions have, and we must note down the pros and cons during this crisis, as it is likely to inform future approaches, even when the COVID-19 crisis has passed.

Covid-19 has enabled re-orienting health services, linking medical care with that of community action and activation, creating an unprecedented opportunity. This requires the caring network to be seen as the primary consideration for intervention at end of life, rather than being limited to person-centred care.

Integrated Community Care (ICC) points towards a paradigm shift at the citizen, community and system level. Lived experience, a shared vision on the common goals of a local community, distributed power and collective learning are its cornerstones.

Compassionate Communities recognizes the importance of integrating health and social care systems, cross-organisational collaboration reaching beyond the usual networks of organisations and communities to call upon contributions, ideas and actions from a wider spectrum of people. Compassionate Communities focus specifically on the topic of serious illness, ageing, dying, caregiving and loss which requires the integration of health and social care systems that work with people, as well as for people, that also lies in the core of ICC approach.

Implementation of ICC is guided by 7 effectiveness principles:

CO-DEVELOP HEALTH AND WELLBEING, ENABLE PARTICIPATION

1. Value and foster the capacities of all actors, including citizens, in the community to become change agents and to coproduce health and wellbeing. This requires the active involvement of all actors, with an extra sensitivity to the most vulnerable ones.
2. Foster the creation of local alliances among all actors which are involved in the production of health and wellbeing in the community. Develop a shared vision and common goals. Actively strive for balanced power relations and mutual trust within these alliances.

3. Strengthen community-oriented primary care that stimulates people’s capabilities to maintain health and/or to live in the community with complex chronic conditions. Take people’s life goals as the starting point to define the desired outcomes of care and support.I.e. CC focus on building alliances, what is in particularly visible on a Compassionate City example – involving all organisations and explicitly recognising the need of having everyone involved in the process and talking about it – e.g. workplaces and work unions, places of worship, schools, etc. CC stimulates people’s capabilities by involving citizens with a minimum barrier for engagement – they do not need to become trained volunteers, but they can participate and support others by showing compassion, giving a listening ear, offering small gesture of kindness.

BUILD RESILIENT COMMUNITIES

4. Improve the health of the population and reduce health disparities by addressing the social, economic and environmental determinants of health in the community and investing in prevention and health promotion.
5. Support healthy and inclusive communities by providing opportunities to bring people together and by investing in both social care and social infrastructure.
6. Develop the legal and financial conditions to enable the co-creation of care and support at community level.I.e. Compassionate Communities include all actors of the process, putting extra effort and sensitivity towards the most vulnerable ones – such a homeless people, prisoners. By doing so CC are striving to reduce health disparities, guided by the conviction that every person deserves to die in circumstances respectful of that person’s wishes, providing support for everyone, no matter where they are from.

MONITOR, EVALUATE AND ADAPT

7. Evaluate continuously the quality of care and support and the status of health and wellbeing in the community by using methods and indicators which are grounded within the foregoing principles and documented by participatory ‘community diagnosis’ involving all stakeholders. Provide opportunities for joint learning. Adapt policies, services and activities in accordance with the evaluation outcomes.I.e. CC continuously check its intervention’s effectiveness – even with small initiatives like the Compassionate Café, respondents are asked about their feelings before and after having the discussion. Even though finding a comparable measures is difficult, CC is looking for different evaluation methods and adapts policies, such as the ones existing on a city level, accordingly.

https://phpci.info/

https://www.compassionate-communitiesuk.co.uk/

https://www.compassionate-communitiesuk.co.uk/blog-pages

Compassionate City Plymouth was led and developed by Gail Wilson from St Luke Hospice Plymouth since 2015. Since April 2021 Gails successor is Abenaa Gyamfuah-Assibey, serving as a primary contact agyamfuah-assibey@stlukes-hospice.org.uk

Community Champions – Pallium Canada: https://www.pallium.ca/champions/