Can Hospice and Palliative Care Volunteering Survive Covid-19?

CONCLUDING OUR SERIES ON CELEBRATING THE IMPORTANT ROLE OF VOLUNTEERS IN PALLIATIVE CARE

As the pandemic developed, many volunteer roles were stood down. Now, with the resurgence of the virus in many countries countless volunteers may have been prevented from volunteering for almost a year. Ros Scott and Leena Pelttari, CoChairs, European Association for Palliative Care (EAPCTask Force on Volunteering, discuss the impact of Covid-19 on volunteering and ask the questions that they hope will become the focus for new research.


Ros Scott and Leena Pelttari, Co-chairs of the EAPC Task Force on Volunteering.

The past year has been extremely challenging, with Covid-19 affecting everyone professionally and personally in so many different ways. It is perhaps unsurprising that our task force meetings have included much discussion on the very significant impact on volunteering. Initially, anecdotal evidence suggested that most hospice and palliative care organisations had asked volunteers to stop volunteering – mainly to protect patients and volunteers.  In addition, many volunteers, because of age, were at increased risk from Covid-19 and either could not, or chose not to, continue volunteering. Findings from research undertaken by Walshe et al. (2020), as part of the international CovPall study give us important insights into the true impact of Covid-19 on volunteering internationally. The study found that 72 per cent of respondents had changed how volunteers were involved, with 68 per cent indicating much lower levels of volunteer involvement. Some organisations, however, found new and creative roles for volunteers – for example in providing telephone and online support to patients and families. (You can watch a video of Professor Catherine Walshe’s presentation of the CovPall study on volunteering at the 11th EAPC World Research Congress).

With the resurgence of the virus in many countries, a majority of volunteers may now have been prevented from volunteering for almost a year. It is possible that even with vaccination programmes, this could continue for some time as organisations evolve into a new future. This leaves us with many questions:

  • Has hospice and palliative care volunteering changed forever?
  • Can volunteering return to previous activities and levels – should it?
  • Will volunteers return?
  • Will there be roles for all volunteers in organisations that have had to restructure services as a result of the economic impact of the pandemic?

Are there opportunities and lessons to be learnt?

Despite the many distressing impacts of Covid-19, it provides hospice and palliative care volunteering (HPC) with a unique opportunity. Many countries have seen a sharp rise in informal volunteering as individuals responded to the needs of vulnerable people within their communities.

  • How can HPC organisations learn from this?
  • How can we build on the new ways of involving volunteers?
  • How do we diversify the age profile of HPC volunteering?
  • How can we retain the experience and commitment of older volunteers, enabling them to remain involved, if they choose not to return to face-to-face volunteering?
  • Where can we find new volunteers?
  • If, as previous research has suggested, volunteers are essential to HPC and to sustainability, what implications does the loss of volunteering have for patients, families and organisations?
  • What can we learn from those organisations that continued to involve volunteers? (For example: this inspiring account from St Wilfrid’s Hospice in Eastbourne, UK.

Many of the questions above – and more – were explored at our Open Task Force Meeting at the EAPC World Research Congress Online on 7 October 2020. It was encouraging to see the excellent attendance at the meeting. Discussions focused on two key questions:

  • What are the key research questions for volunteering today in order to inform future development?
  • Are there opportunities for research collaborations?

The first question produced an extensive list of topics and the answer to the second question was a clear ‘yes’!

We are delighted that there has been international interest from researchers in collaborating. We have held two Zoom meetings and are now in the process of developing a new research study led by Professor Catherine Walshe to explore the impact of Covid-19 on volunteering one year on. If you are a researcher interested in being part of this project, please email either Ros (rosc.scott@btinternet.com) or Leena (leena.pelttari@hospiz.at), who will be happy to give more information.

Reference

(2020) Walshe, C., Bradshaw, A., Cripps, R., Fraser, L., Bajwah, S., Dunleavy, L., Hocaoglu, M., Maddocks, M., Murtagh,F., Oluyase, A., Preston, N., Higginson, I., on behalf of the CovPall study team. 11th EAPC Word Research Congress: Online. 7-9 October.  Abstracts from the 11th EAPC World Research Congress. Watch a video of the presentation here.

Read the series on Palliative Care and Volunteering and Coronavirus and Palliative Care on the EAPC blog. With grateful thanks to the Guest Writers who contributed to this series: Ritva Pihlaja, Mirja Sisko Anttonen (Finland), Chiara Caraffa (Italy), Sabine van der Hoorn (Belgium). Also, Leena Pelttari (Austria) and Ros Scott (Scotland, UK) who contributed to and coordinated the series on behalf of the EAPC Task Force on Volunteering.

Links

  • Follow Ros on Twitter @RoscRos
  • Follow Leena on Twitter @LeenaPelttari
  • European Association for Palliative Care Task Force on Volunteering web page.

Please help us to advocate for the support, recognition, promotion and development of volunteering in hospice and palliative care by signing The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care.

 

EXPLORE NEW DIMENSIONS  17th  EAPC World Congress Online  #EAPC2021 – interactive live sessions 6 to 8 October 2021.

Posted in Coronavirus and palliative care, VOLUNTEERING IN PALLIATIVE CARE | Tagged | Leave a comment

Together towards better palliative care education for nurses and physicians – the EduPal (Finland) project

Minna Hökkä, Project Manager, and Juho Lehto, Project Coordinator, explain more about the EduPal (Finland) project and how it aims to develop palliative nursing and medical education in Finland through multi-disciplinary cooperation.

Juho Lehto (left) and Minna Hökkä.

The need to ensure competence for nurses and physicians in the successful provision of quality palliative care is crucial. As such, the need to develop both nursing and medical education is shared between these two professions. Having already been addressed in Finland in official reports, and in discussions with students and colleagues, the foundations were laid for the start of a nationwide project to develop nursing and medical palliative care education together. Funding was obtained through a joint effort and the project, named EduPal,  launched in March 2018.

EduPal (Finland) is a national flagship project funded by the Finnish Ministry of Education and Culture. The project includes most of the universities of applied sciences (UAS) providing nursing education and all five universities providing medical education in Finland. For almost three years, nursing and physician educators have together developed education in palliative care. One of the most important cornerstones in the project has been multidisciplinary cooperation.

The current state of education in palliative care was first evaluated by analyzing the curricula of the nursing and medical schools nationally. The most important competences for nurses 1 and physicians 2 were then studied to develop education, which would provide the required competences to professionals for each level of palliative care. Finally, large national surveys were made on graduating nursing and medical students to obtain the students’ views of the need to develop the education.

Based on the research made in the project, national recommendations for the curriculum of palliative care in undergraduate nursing and medical education were published (Hökkä M, Lehto J, Joutsia K et al. 2020) (Lehto J, Saarto T, Hirvonen O et al. 2020). In addition, reviews of effective teaching methods were made3 when developing the education. In collaboration with working life, a national specialization education curriculum (30 ECTS) for bachelor nurses was developed and launched in January 2020 in 16 UASs. Also, a Master’s degree in palliative care advanced practice nursing was developed and launched in 2020. Recommendations for the development of the current special education in palliative medicine for physicians will be published in 2021.

At the same time as the education was being developed, approaches to integrate palliative care as part of the social welfare and healthcare system were proceeding with the Ministry of Social Affairs and Health, with the participation of EduPal (Finland) project members. (Saarto T, & Finne-Sovari H. 2019).

One goal of the EduPal project was to facilitate international collaboration and as part of this work a successful application for Erasmus funding were made with international partners. The development of palliative care nursing education will continue at a European level through an Erasmus + project, NursEduPal@Euro, in collaboration with HOWEST University of Applied Science (Belgium), Kajaani University of Applied Sciences (Finland), the University of Transilvania in Brasov (Romania), Institute for Nursing Science Practice, Paracelsus Medical University, Salzburg (Austria) and the European Association for Palliative Care (EAPC)

In summary, the Finnish EduPal-project aims to offer high-quality palliative care for every patient and family based on their needs, from nursing homes to specialized units, by ensuring required competences to nurses and physicians.

References 

  1. Hökkä M, Martins Pereira S, Pölkki T, Kyngäs H, Hernández-Marrero P. Nursing competencies across different levels of palliative care provision: A systematic integrative review with thematic synthesis. Palliative Medicine. 2020a;34 (7):851–870.
  2. Melender H-L., Hökkä M., Saarto T. & Lehto J. The required competencies of physicians within palliative care from the perspectives of multi-professional expert groups: a qualitative study. BMC Palliative Care. 2020; 19:65.
  3. Hökkä M, Rajala M, Kaakinen P, Lehto J, Pesonen H-M. The effect of teaching methods in palliative care education for undergraduate nursing and medical students –  a systematic review. International Journal of Palliative Nursing. Accepted 15.2.2021

Links and resources

Three EduPal (Finland) videos to watch (with sub-titles in English):

Read more about education and training in palliative care on the EAPC blog.

More about the authors…

Minna Hökkä, RN, PhDc, is the Project Manager of EduPal. Minna is the Head of School at the School of Health and Social Services, Kajaani University of Applied Sciences, Kajaani, Finland.

Juho Lehto is the Project Coordinator of EduPal. Juho is Professor in Palliative Medicine in the Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.


EXPLORE NEW DIMENSIONS  17th  EAPC World Congress Online  #EAPC2021 – interactive live sessions 6 to 8 October 2021.

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My experience of working in a hospice during the Covid-19 pandemic

CONTINUING OUR NEW SERIES: COVID-19 AND THE PALLIATIVE CARE RESPONSE 

Today, Dr Ebun Abarshi, a locum associate specialist doctor in palliative medicine in the United Kingdom, looks back on her experiences of working at a hospice during the first wave of the Covid-19 pandemic. Describing this as a period of discovery and recovery, Ebun touches on some of what she gained, the impact on staff and family and how she coped in the face of personal tragedy.

 

Dr Ebun Abarshi.

I had just returned to the UK from holiday when the coronavirus pandemic struck – all hopes of easing back into work were quickly thwarted. As the country went into ‘lockdown’, I decided to switch jobs rather abruptly to work closer to home where I applied to work in a local hospice.

 

 

Adapting to the new normal

On my very first working day, there was a formal staff briefing about changes to the then normal pattern of working and training on how to use the new Personal Protective Equipment (PPE). We shared material and human resources across the region, and this included best practices and policies. With time, I mastered the art of surviving unending Zoom meetings. Yet, those meetings were vital to updating our knowledge in line with the latest government guidance and preparing us on how best to respond to the rapidly evolving pandemic – but sitting through four long sessions on a Tuesday was thoroughly exhausting!

To ensure social distancing, teams were separated, and I was relocated to the gym – away from the inpatient unit. I felt ‘isolated’ in many ways and sought creative ways of adapting. Working from a different ‘site’ allowed me to meet and appreciate nonclinical staff members who play a huge role in keeping the service going. I worked in proximity to the fundraising, administrative and housekeeping teams, and got to know a few of them well.

Appreciation Thursday

One of the things that meant a lot to us was the support from families and the general public. Throughout there was a constant supply of flowers and household items for staff. Thursday was a special day with a public gesture of appreciation to frontline workers. Various groups would visit the hospice – from members of the local Gurdwara Temple beating their drums in the hospice foyer, to local firefighters. I especially remember the family with a baby in a pram who patiently waited at the door of the hospice until I’d finished my shift to say, ‘thank you doctor’. That moved me to tears as I drove home.

The impact on personal and family life

I received the news of my mum’s death while on duty during the pandemic. I was admitting a patient when my phone rang, and my husband broke the news. She had died peacefully in her sleep. She was a cancer survivor; though frail and elderly she had outlived her prognosis and had lived her life to the fullest. I couldn’t complain, although I would have loved to be there with her. Luckily, I had seen her before the lockdown, but I confess it was really hard… Work became my defence mechanism. Later that day, I told my colleagues “my mum died” – and that was it. There was a national lockdown: I couldn’t travel to Africa to see her body or bid her farewell. I couldn’t be there at her funeral. I could not even visit my siblings living in the same country as me.

Physical therapy

On the home front, we made multiple adjustments. Our younger son Daniel returned to work from home and the family decided that preparing meals was their own way of supporting me. That allowed me to fully embrace the routine of digging up the earth, planting seeds, feeding the birds, quiet meditation, and simply enjoying being outdoors. This aspect was very therapeutic indeed.

In a nutshell, the pandemic has been a period of discovery and recovery for me. I have discovered inherent skills and graces I never knew were there. More than ever before, I look to my faith for inner strength, because people look to me for their strength. After all, I cannot give what I do not have. I seldom speak about my work and do not mention that we routinely admit Covid patients on our wards. This is my own way of coping with the pandemic. I am grateful for the privilege to jointly serve humanity. My heart goes out to those who have lost loved ones, lost jobs or their means of livelihood, and to all frontline workers who are able to put aside personal challenges and to keep going and do the very best they can for patients and families.

Links and resources

  • Coronavirus and the palliative care response: EAPC web page with links to publications and resources
  • ‘Roles and responses of palliative care during the Covid-19 pandemic and beyond’ – video presentation by Prof Irene Higginson at the 11th EAPC World Research Congress Online 2020. View the video here.

Read more posts on the EAPC blog about Covid-19 and the Palliative Care Response.We’re looking forward to more contributions in the coming weeks from Brazil, Portugal and the UK. Do contact if you’d like to contribute too. Check our Contributor’s Guidelines here.


EXPLORE NEW DIMENSIONS  17th  EAPC World  Congress Online  #EAPC2021 – interactive live sessions 6 to 8 October 2021.

Posted in Coronavirus and palliative care, PATIENT & FAMILY CARE | Tagged | 3 Comments

Healing through compassionate leading in Spain: New president for SECPAL

As a membership organisation, the European Association for Palliative Care is proud of its strong relationship with its members, both member associations and individual members, across Europe and beyond. Today, we’ve invited newly elected president, Dr JP Leiva, to introduce himself and his organisation – the Spanish Society for Palliative Care (SECPAL).

Dr JP Leiva (top left) with members of the SECPAL Board of Directors.

Becoming President of the Spanish Society for Palliative Care (Sociedad Española de Cuidados Paliativos – SECPAL) is a title I assume with great honour and humility. I would like to take this opportunity to introduce myself and our organisation.

I am a specialist in Family and Community Medicine and a member of the team that pioneered the development of renal palliative care in Spain. I currently work on the Spanish island of Mallorca in the Support and Palliative Care Team at Manacor Hospital.

As a physician, I am a graduate of the European Palliative Care Academy (EUPCA) to whom I’m thankful for helping to put me on the path of leadership in the palliative care community. I am rooted in the belief that palliative care is a strategic key to the humanisation of health, a challenge that, in the past year, has become urgently necessary. I am also keenly interested in identifying opportunities offered by new technologies, design, and the virtual world that have made their way into our lives.

The Spanish branch of the palliative care community is represented by SECPAL, which brings together more than 2,000 professionals in the comprehensive care of people with advanced diseases, limited life prognosis, and all those committed to palliative care. I would say our defining characteristics are optimism, teamwork, solidarity, trust and collaboration. Central to our mission is the promotion of a strategy focused on securing the accreditation of the professional competencies, which is an urgent need in Spain. In Spain, palliative care as a specialty is not yet officially recognised. Yet, as we know, this is one of the key elements for the development of palliative care in pre- and post-graduate curricula. Improving equity in the access of palliative care in Spain encourages us to develop new alliances and partnerships.

The coronavirus pandemic has made us aware of the need for healing among the palliative care community; one of the ways we can achieve this is through a collaborative and compassionate leadership, and through taking care of our teams. This unprecedented circumstance has inspired SECPAL’s board to find innovative ways for improving professionals’ self-care and self-compassion. Our ‘XIV Jornada  SECPAL’ will specially focus on nurturing self-care and self-compassion. Directed by Dr Manuel Castillo Padrón (an alumni of EUPCA and a member of our board), the study days will be offered virtually during four weeks in October 2021, allowing participants from across the Spanish-speaking world to join us and learn together.

This may help to improve the resilience of professionals, teams and organisations which, in turn, should have a positive impact for patients and their families. The newly elected members of SECPAL’s Board are excited and are already working hard to welcome you at our study days. This will also give us the opportunity to keep in touch with colleagues until our annual conference takes place in Mallorca in 2022.

I have a special admiration for SECPAL, an organisation in which medicine and nursing converge in their various branches, as well as other equally important areas, for example, social work, psychology, ethics, spirituality, physiotherapy, pedagogy, volunteers and complementary therapies like music therapy. I am proud too of the devoted work that SECPAL has dedicated to Latin America’s palliative care community, and our quarterly journal, Medicina Paliativa, which has been bringing science closer to professionals since 1999.

This multidisciplinary approach makes SECPAL a natural ‘home’ for anyone working in palliative care, and we will work to make sure that it continues to faithfully welcome science, ethics, and the art of caring at the end of life.

Links and resources


FREE EAPC membership for members of SECPAL – or other national associations

Readers who are currently members of SECPAL (or any other national palliative care association that is a member of the EAPC) are invited to join the EAPC for free. Join or renew your membership here, and benefit from some great opportunities!

ARE YOU MAKING AN OUTSTANDING CONTRIBUTION TO PALLIATIVE CARE RESEARCH AND CLINICAL PRACTICE? APPLY BY 31 MARCH…
Apply, or nominate a colleague, for a 2021 EAPC Researcher Award Full details here. Prizewinners will present at the 11th EAPC World Research Congress Online.

 

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Development of a Core Outcome Set for Effectiveness Trials of Interventions to Prevent and/or Treat Delirium in Palliative Care (Del-COrS): Participants Needed for an International Delphi Survey

What outcomes should be included in future studies of interventions to prevent and/or treat delirium in palliative care?

The Del-COrS international collaboration led by Professor Louise Rose, King’s College London, UK, would like to invite EAPC members and supporters to take part in two online Delphi surveys to hear your views.

 

Professor Louise Rose, Del-COrS research group lead.

Delirium in Palliative Care

Delirium is a severely debilitating condition which impacts a person’s ability to process information, interact and perceive the world around them. It affects up to 88 per cent of people at the end of life1 and the cause is often multifactorial. Patients and family members who have suffered from delirium report extreme distress which has a profound impact on the quality of dying and death experience. For healthcare professionals, recognising, assessing, and treating delirium in the context of a life-limiting illness can be complex.

This has prompted a substantial increase in the number of effectiveness trials of pharmacological and non-pharmacological interventions to prevent or to treat delirium in palliative care. The Del-COrS research group aims to develop international consensus on a core outcome set for future research studies of these interventions, using the methods recommended by the Core Outcome Measures in Effectiveness Trials (COMET) Initiative.2

Core Outcome Sets

To help patients, their family, and health professionals make decisions about treatments for delirium in palliative care, we need evidence about what works best. Treatments are developed and tested by researchers to make sure they work and are safe. To do this, researchers need to look at the effects those treatments have on patients.

Researchers do this by measuring an ‘outcome’. For example, in a study of how well a new delirium treatment works in a palliative care setting, ‘outcomes’ might include:

  • A measure of how fast the delirium goes away.
  • The distress caused by delirium.

When a set of main outcomes has been agreed, it’s called a ‘core outcome set’. If all studies of delirium in palliative care then measured and reported these core outcomes, we could bring together all the studies to get a better understanding of which treatments work best.

We are currently looking for volunteers, including patients, family members, carers, healthcare professionals and researchers with experience of delirium in palliative care.

In this study, you would participate in two online Delphi surveys to give your views on the outcomes that are important to include in future studies of interventions to prevent or to treat delirium in palliative care. We will subsequently invite you to a meeting to discuss findings from these Delphi surveys and vote on outcomes you consider important.

We anticipate that the first survey will start in April 2021 and this will remain open for approximately six weeks. Each survey is brief and should take five to 10 minutes to complete.

Join us and have your say!

For more information, or to volunteer for this study, please email Dr Anna Bryans (Research Team Member).

This study has received ethics clearance through the Health Research Authority and Research Ethics Boards at King’s College London and University of Toronto.

Want to know more about Core Outcome Sets?

Check out the Del-COrS study protocol published in BMJ Open.

References

  1. Watt CL, Momoli F, Ansari MT, Sikora L, Bush SH, Hosie A, Kabir M, Rosenberg E, Kanji S, Lawlor PG. The incidence and prevalence of delirium across palliative care settings: A systematic review. Palliat Med. 2019;33(8):865-877.
  2. Williamson PR, Altman DG, Bagley H, Barnes KL, Blazeby JM, Brookes ST, Clarke M, Gargon E, Gorst S, Harman N, Kirkham JJ, McNair A, Prinsen CAC, Schmitt J, Terwee CB, Young B. The COMET Handbook: version 1.0. Trials. 2017;18(Suppl 3):280.

EXPLORE NEW DIMENSIONS  17th EAPC World Congress Online  #EAPC2021 – interactive live sessions 6 to 8 October 2021.

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