Hospice and palliative care volunteering in Italy in times of COVID-19 


Today, our guest writer is Chiara Caraffa, National Board Member of the Italian Federation for Palliative Care – FCP, and a member of the steering committee of the European Association for Palliative Care (EAPC) Task Force on Volunteering. Chiara looks at how the vital service of volunteering has been affected by the COVID-19 pandemic in Italy. 

I am writing this post just ahead of this year’s ‘International Volunteering Day’, which takes place on 5 December. This year’s theme, ‘Together we can through volunteering’, is especially apt and reminds us that there is still so much to do to ensure that the role of volunteering in hospice and palliative care becomes relevant for all our communities.

Italy was the first European country to experience SARS-COV-19 pandemic. Since February 2020, Northern Italy, in particular, has been torn apart by a very high number of cases with immediate consequences. Overwhelmed by the rapid and unstoppable increase in cases, we experienced great difficulty in intercepting and responding to the need for palliative care in patients affected by COVID-19, which was compounded by a violent impact from a psychological and economic point of view.

The Federation for Palliative Care (Federazione Cure Palliative – FCP) is an umbrella organisation, which brings together 95 national associations with the shared mission to guarantee palliative care to those in need. As an organisation, we were thus very aware of the dramatic impact of the pandemic on our members. FCP also monitors the activities of its non-profit organisations (NPOs) with periodical data collection, the latest of which, made before the current emergency, was in 2019.

Of more than 7,000 volunteers belonging to FCP, 76 per cent are women, 77 per cent are over the age of 50 years, an age that is steadily increasing.

More than half of these volunteers (54 per cent) are engaged in “Being there” (actively being alongside and supporting patients), and this was the first activity that stopped during the pandemic.  ‘Being there’ volunteers have crucial roles, such as:

  • allowing moments of usual life;
  • facilitating patient’s relationships;
  • giving support and helping emotional sharing about the incurable illness;
  • having a social role.

Seventy-nine per cent out of our 95 non-profit organisations follow the guidelines dictated by the FCP: selection, training, supervised placement, psychological supervision, and continuing education.

In addition to the volunteers who are physically present beside suffering people, others are involved in a wide range of other activities: fundraising, publicity and public awareness, secretarial support, transport, and home delivery of medical supplies.

Our 2020 survey of the period from 1 March to 31 May shows that the severe measures to prevent the spread of the virus led to the suspension of voluntary work in Hospice and Palliative Care (HPC) in care settings, such as hospice and home, clinics, in associated offices and throughout the peninsular territory.

The decision to suspend the voluntary service of ‘Being there’ was initially taken by the legal representatives of the NPOs, followed just by lukewarm signals of a possible recovery by the public and private institutions where our volunteers work. This trend has not stopped yet. Now, we are experiencing a new rise in cases after a phase of remission of the infections, and volunteers are still far away from patients and family members – except for remote support via video calls.

Impact of COVID-19 on the feelings of volunteers

The volunteers expressed feelings of frustration and guilt for not being physically alongside the patients they would have normally supported. During one of the numerous opportunities for discussion promoted by the psychologists of the member organisations (who have done a great job in supporting us to rebuild a stable network of relationships), Roberto chose a photograph of a piece of crumpled paper and said:

“It represents precisely those deaths in solitude for me, and those thoughts, unspoken gestures, and also the regret of not being able to accompany your loved one in the last moments of life. I imagined all these feelings in the folds of that sheet, reminiscent of Origami”.

The response of the FCP to the pandemic followed three main axes: inclusion of member NPOs and reshaping of volunteering and mission activities, communication to the community about the citizen’s right to access palliative care – even in emergency scenarios.

We want to focus our work on another theme, the revision/implementation of volunteer training programmes. We must strive to ensure that the role of volunteering in HPC – that is already officially recognised – becomes relevant for all our communities: a brand-new challenge for us! Italy has recently sanctioned the ‘Definition of homogeneous training profiles for voluntary activities in the context of palliative care networks’.

Our hope for the future

We want to ensure the homogeneity of educational and organisational models and care pathways – without neglecting any setting: adult and children hospices, home-based palliative care, clinics, and nursing homes for the elderly – and training too.

Links and resources

EAPC website. We are currently experiencing some technical problems on the EAPC website (www.eapcnet.eu) and are working on a solution. We apologise for this inconvenience. If you need urgent help, please email us at info@eapcnet.eu Please keep an eye on our social media and this blog for updates.

This entry was posted in Coronavirus and palliative care, EAPC Task Forces/Reference Groups, VOLUNTEERING IN PALLIATIVE CARE and tagged , . Bookmark the permalink.

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