And … action! Hospice and palliative care volunteers as patients

Dr Birgit Jaspers, researcher at the University of Bonn, Germany, reports on new challenges faced by volunteers working with her institution   

Dr Birgit Jaspers

Dr Birgit Jaspers

Hospice volunteers are known to undertake a variety of roles and tasks but I wonder how many take on the role of patient? Every year, our palliative care unit organises a seminar for medical students where some of our volunteers act as patients.

‘I really liked being Mrs Gafferty (and no older than 50!)’, said Mrs B (who in real life is about 60). ‘But still, even with my experience as a hospice and palliative care volunteer and having been a member of our local theatre group, it was a challenge to play someone with renal failure, severe dyspnea and in pain. Mrs Gafferty wants to tell her doctor that she no longer wants to undergo dialysis therapy, and the doctor has to make clear she understands what such a decision will entail. Acting is different from accompanying seriously ill people, there’s even more identification, and I could really feel the different effects on me when a student, ‘the doctor’, came to see me. If their attitude is friendly and empathic, I feel that my dignity is respected and I feel safe. If they avoid eye contact, don’t listen to what I say, behave in a paternalistic way or come across as not being authentic, it makes me close up, aggressive or feel lost.’

Other volunteers report similar impressions. Some don’t have any previous acting experience, but are motivated to improve communication between physicians and patients, particularly about ‘breaking bad news’ during a life-limiting illness. The volunteers have heard so many sad stories from the patients they accompany, stories that show how poor communication impacts on their vulnerable clientele.

Volunteer and student in action

Volunteer and student in action

Mr P told me: ‘It somehow increases my trust in the future healthcare system to see how much the students learn about dealing with stressful communication situations and how keen they are to use this playground for practicing. Some of them might be my doctors one day, you never know …’

We introduced training on communication into our education unit in winter 2011/2012. This mandatory unit combines lectures, workshops, experiential learning and role-play. Fourteen ‘actors as patients’ were cast and invited to choose from six storyboards inspired by real patients. The role-plays are performed in small groups of six students and moderated by one or two members of the clinical team. Before each 10-minute role-play, there is a warm-up for the student and the actor and feedback rules are explained. The student comments on his performance, observations and feelings, then the actor, and then the remaining group of five students is invited to give their feedback too. The session is rounded up by the moderating team member(s) identifying further strengths and weaknesses.

The students evaluated communication training in the palliative care context as extremely helpful. About 75% reported increased awareness of emotional aspects in palliative care and medical fields in general; 68% felt more self-confident in approaching patients with bad news, and 48% said the training helped them reflect on their own influence on the course of a conversation.

Overall feedback to the university teaching evaluation system was great and we are proud that Lukas Radbruch, our Chair in Palliative Medicine, has received the ‘Lehrpreis der Rheinischen Friedrich-Wilhelms-Universtiät Bonn’ (University teaching award 2013). 

Our volunteer actors highlighted another important issue. Some of the storyboards included patients with diseases other than cancer, eg ALS, dementia and renal failure.

‘In order to act true-to-life,’ said Mrs M, ‘I read a lot about dementia and ALS and communicating with these patients. This – and what I learned during the sessions – was also very helpful for my patient-centered work as a volunteer. For us, it is quite new to care for patients over a long period, now that patients with non-cancer diseases are more frequently included in palliative care and thus not only the professionals are facing new challenges, but also us.’

Join our workshop on 31 March-5 April 2014
Encouraged by our success in the actor-as-patient teaching method, and the challenges of caring for patients with an increasing spectrum of diseases, we are holding an interdisciplinary and international workshop to discuss needs-based future concepts of volunteering in palliative care.  (Book a place now – deadline for registration 15 January.)

We’re looking forward to the outcomes of latest approaches to volunteering, be it our own projects, projects of the newly founded volunteer section within the German Association of Palliative Medicine, or the EAPC Task Force on Volunteering in Hospice and Palliative Care.


4 Responses to And … action! Hospice and palliative care volunteers as patients

  1. Pingback: And … action! Hospice and palliative care volunteers as patients | EAPC Blog | All Things Palliative - Article Feed

  2. Pingback: Hospice volunteers’ experience adds bite to training role plays with doctors | Social work and end-of-life care

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