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Implementing an interdisciplinary palliative care education programme to speech-

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language therapy and dietetic students

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Anna Miles1, Alana Brady1, Philippa Friary1, Julia Sekula2, Clare Wallis2, Bianca Jackson1 3

1Speech Science, The University of Auckland 4

2Nutrition and Dietetics, The University of Auckland 5

Corresponding author: Bianca Jackson PhD, Speech Science, School of Psychology, Grafton Campus, The 6

University of Auckland, Private Bag 92019, Auckland, NEW ZEALAND. Phone +64 9 923 8177, Fax +64 9 7

373 7902. Email [email protected] 8

ABSTRACT

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Palliative care education for allied health professionals has received minimal research

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attention. This longitudinal study followed the development of an education programme for

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speech-language therapy and dietetic students. The project comprised three stages. In Stage I,

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consenting SLT and DT graduates (n=9) were interviewed six months after graduation

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exploring preparedness for working in palliative care. Interviews were transcribed and topics

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were extracted through content analysis. In Stage II, a new palliative care curriculum was

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developed using the extant literature and gaps reported in Stage I. In Stage III, we

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implemented and evaluated the new curriculum. Students were surveyed pre- (n=68) and

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post- (n=42) the new programme and at 6-months post-graduation (n=15) to capture student-

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reported changes in knowledge and confidence in palliative care. In Stage I, 10 topics were

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developed covering knowledge, roles, team, family-focused care and feelings. In Stage II, a

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hybrid programme was developed including e-learning modules, didactic lecture and a

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simulated learning experience. In Stage III, student feedback demonstrated positive shifts in

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knowledge and confidence ratings from medians 3-6 to 5-8 (1=none; 10=excellent) across all

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domains. Gains in knowledge and confidence were consistency higher at 6-months post-

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graduation for final survey respondents. Mixed modality interprofessional palliative care

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education for allied health professionals has merit in improving knowledge, confidence and

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perceived preparedness for practice.

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KEYWORDS: palliative care; allied health; interprofessional education; pre-registration;

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speech-language therapy; dietetics

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INTRODUCTION

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Palliative care has developed substantially since its beginnings in England in the 1960s.

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Palliative care is appropriate for those with a diagnosis of a life-limiting, long-term condition (for 32

example, respiratory or cardiac conditions or progressive neurological conditions) and may cover 33

many years. End-of-life care is ‘an approach that improves the quality of life of patients and their 34

families facing problems associated with life-threatening illness, through the prevention and relief of 35

suffering by means of early identification and impeccable assessment and treatment of pain and other 36

problems, physical, psychosocial and spiritual’ (World Health Organisation, 2020). Consistent with 37

recent and extant research, The New Zealand Palliative Care strategy (2001) aimed to develop a 38

system that can support a person’s choice to die at home. Twenty years later, the wish to be cared for 39

and die at home remains common amongst early and end-stage patients (Nysaeter et al., 2022).

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Speech-language therapists (SLTs) and dietitians (DTs) have an established role in palliative 41

care in terms of communication, swallowing and nutritional support (Krikheli et al., 2018; Pinto et al., 42

2016). Dietitians have a role in nutritional assessment and planning and liaising with food services to 43

ensure optimal patient-centred meal choices (Pinto et al., 2016). SLTs have a role in supporting 44

communication skills, eating and drinking safety and enjoyment, upper-airway and oral health 45

(Krikheli et al., 2018). In the terminal phase, communicating one’s last thoughts, communicating pain 46

levels and comfort feeding are critical. Formalised competencies and palliative care education for 47

these allied health professionals has received minimal research attention. Yet, there remains 48

uncertainty for people within and outside of these professional groups about the role, skills and 49

knowledge that SLTs and DTs hold (Kelly et al., 2018).

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A range of teaching approaches have been used to meet students’ needs with positive results 51

in terms of knowledge and attitudes (Donne et al., 2019). Education content comprises of theoretical 52

learning on medico-legal implications, end-of-life care, professional roles and responsibilities, grief 53

and loss. Education packages have included self-reflection on personal experiences of death and 54

personal cultural beliefs, and professional values of human dignity as well as self-care and resiliency.

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Having difficult conversations has been taught explicitly through simulation (Gilliland, 2012), work 56

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4 shadowing (Levine et al., 2017) and direct modelling (Kim et al., 2006). Other programmes have 57

included problem-based learning (McKee et al., 2013) and didactic teaching. Some student feedback 58

has suggested that in the first instance, self-directed learning opportunities are preferred over face-to- 59

face content to reduce the confronting nature of the topic (Mathisen et al., 2011). This has paved the 60

way for a range of distance-learning programmes worldwide including e-learning (Levine et al., 2017;

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Mathisen et al., 2011), video conferencing (Ray et al., 2014), and personal learning portfolios 62

(Gwyther & Rawlinson, 2007).

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Although the palliative care education evidence-base involves a range of services delivered 64

by a range of professionals, much of the work published focuses on doctors and nurses in hospital 65

settings, with little attention to the education of allied health professions, or in community settings. A 66

number of systematic reviews have summarised this literature over the years (Adriaansen & van 67

Achterberg, 2008; Bickel-Swenson, 2007; DeCoste-Lopez et al., 2015; Donne et al., 2019; Fitzpatrick 68

et al., 2017; Lloyd-Williams & MacLeod, 2004). By 2005, there were 31 efficacy studies in palliative 69

care education for nurses alone covering communication, attitude to death, empathy and pain/

70

symptom management (Adriaansen & van Achterberg, 2008). Another 126 studies were reported up 71

until 2015 in medical education (Fitzpatrick et al., 2017). Typically, programmes in the research 72

literature are mono-disciplinary.

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A handful of studies have addressed health professional student preparedness for working 74

with people in palliative care and end-of-life as part of broader preparation for clinical practice (Chen 75

et al., 2015; Pieters et al., 2020). None of these studies included SLTs. Whilst preparedness is a 76

poorly-defined concept, it broadly encompasses a sense of sufficient knowledge, skills and confidence 77

to start something.

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This four-year stakeholder-led implementation project was initiated in response to informal 79

new graduate feedback from SLTs and DTs who expressed a lack of preparedness for working with 80

people in palliative care on graduation. By gathering detailed feedback and reflections on the existing 81

curriculum, the team aimed to develop a new interprofessional palliative care education programme 82

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5 and evaluate its effectiveness in preparing new graduates preparedness for working with people in 83

palliative care in their first year of work.

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METHODS

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This multi-stage, mixed methods implementation study gained national and locality ethics approval 86

(UOAHPEC 018920). All participants provided written informed consent. The educator team (three 87

SLTs and two DTs), who regularly provide interprofessional teaching to 2-year Masters level, pre- 88

registration SLT and DT students, worked together to improve the palliative care curriculum for 89

students. The project comprised three stages. In Stage I, consenting SLT and DT graduates were 90

interviewed 6-months after graduation to explore their perceptions of their preparedness for working 91

with people in palliative care. Stage II developed a new palliative care curriculum using the education 92

content reported in the literature and the gaps reported by interviewees in Stage I. Stage III 93

implemented and evaluated a new palliative care curriculum. Two years of students were surveyed 94

pre- and post- the new programme, and at 6-months post-graduation, to evaluate student response to 95

the new curriculum as well as their perceptions of their preparedness for working with people in 96

palliative care.

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Stage I. Perceptions of new graduates on their preparedness for working with people in

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palliative care

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Methods

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All Masters level SLT (n=20) and DT (n=10) students who graduated in 2016/2017 at The University 101

of Auckland were invited to interview. Consenting SLT and DT graduates were interviewed 6-months 102

after graduation by an independent researcher, who was not known to the participants or involved in 103

their education. Semi-structured interviews ranged from 20–60 minutes. Researcher asked questions 104

about the new graduates’ positive and negative experience of working with people in palliative care as 105

a student and new graduate, supports available (such as supervision) and to reflect on learning to date, 106

including during their pre-qualifying studies. They did not specifically ask about previous curriculum.

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All interviews were audio-taped and transcribed verbatim by the independent researcher. Interviews 108

were read between 2 and 5 times each by three researchers, coded and topics were developed using 109

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6 inductive content analysis where the researchers allowed the data to determine the topics through the 110

coding process (Elo & Kyngas, 2008). Rigour and credibility was addressed through double-checking 111

and final consensus of the original transcripts and final coding by all researchers. Results are 112

presented under topics and sub-topics with illustrative quotes.

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Results

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Five SLT and four DT graduates consented to be interviewed. Content analysis resulted in 8 topics, 115

divided into three overarching themes. Graduates described the learning experiences that they found 116

beneficial or desired given hindsight (Table 1.) Most students had received some palliative care 117

instruction, but it was not consistent across the participants. Graduates described the key points they 118

thought relevant to working in a palliative care situation (Table 2.). They discussed the insufficiency 119

of their entry-to-practice training as well as reflecting on clinical practicum opportunities where they 120

had valuable learnings.

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Table 1. Aspects of learning students valued or wanted to retain or enhance

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Global topics Sub-topics Illustrative quotes Clinical

Education 1.More observational learning desired

2.Self-care, debrief and reflection are important

‘hearing the supervisor talking helped’

‘I saw my supervisor and saw it doesn’t get easier with time’

‘even though we have had lectures on it but you know some more practical’

‘I needed more experience’

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‘self-care is important’

‘make sure your looking after yourself um because it can be quite heart breaking’

Classroom Education 3.Theoretical learning and reading was good

4.Patient

experiences would be useful

5.Emotional aspects of palliative care

‘more education on what palliative care is’

‘I wanted the lecturers to tell me what to do’

‘hearing family experiences could be useful’

‘workshops of people who have been in the situations share your different experiences’

‘them [educators] talking about what the impact it has on them, very very big emotional loads hearing how they have gone through would probably normalize it’

Awareness of Supports 6.Legal protection

7.Supervision

‘knew who to talk to’

‘how to get proper guidance’

‘I would ask a bit more from my

supervisor in ways that I could

improve’

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8

8.Safety with

protocols ‘being patient centered and that’s fine that is still ethical and that is practicing safely’

126 127

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Table 2. Students self-reported key learnings from educational and professional

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experiences

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Global topics Sub-topics Illustrative quotes Personal

Strategies / Philosophy

Previous experience of death

Personal Reflection Religion and culture

‘it is what it is. You shouldn’t need to creep around it’

‘the medical approach helps’

‘I had a little prayer afterwards’

‘I think about death a whole lot more now’

‘death happens’

Client-centred Maintain pleasures

Respecting client’s choices ‘small pleasures like have ice-cream if you like’

‘I mean, let me eat, I say’

Team Transition of care into community from hospital Different viewpoints Trust

Family as part of the team

‘trust is needed’

‘different viewpoints are good but communication is important’

Terminology /

Definitions Medical labels

Advanced care planning ‘who are we talking about? what is it? Is it a specific thing? people are treated differently because of the word’

‘taboo of being “on” palliative care’

Family Family-focused care Taking time with family Focus on interaction rather than content

‘need to convince the family a student can be trusted’

‘how do we say things to the family?’

‘I learnt from my supervisor to really listen and reflect’

Roles Client-centred care Interprofessional care Student role

Changing role over time

‘I could have been more interdisciplinary and had more in-depth conversations with other professionals’

‘careful you aren’t getting out of role’

‘is it appropriate to intervene?’

‘my professional role was more towards education and having that discussion around comfort feeding’

Feelings Fear and pressure of incompetence Confidence Emotionality Discomfort Purposeful

‘as a student … awkward would be the right word… sometimes lost’

‘I never felt thrown in’

‘always critiquing every little thing I do and

maybe next time not being so negative or

critical of myself’

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‘too much for me at times’

‘not sure if I made a difference’

‘it was heart breaking’

‘letting people down’

‘do I know what I’m doing?’

‘I felt I can’t do anything for them’

‘privileged about making something positive happen for the patient and their family’

‘I had clarity of purpose – giving pleasure in comparison to the risk adverse pathway’

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Stage II. Developing a new palliative care curriculum

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In 2018, the educator team conducted a literature review on approaches and content in palliative care 134

education for healthcare workers (see introduction). The educators developed a new palliative care 135

curriculum based on the feedback from the 2017 cohort and the findings of the literature review. Four 136

topics were considered critical to the palliative education programme: What is palliative care? Values/

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assumption and experiences, Professional roles & responsibilities, and Clinical competency. Learning 138

objectives and teaching modality were mapped to these overarching topics ensuring that knowledge, 139

attitudes, and clinical skills could be effectively integrated into practice (Table 3).

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Table 3. Overview of the Palliative Care Education Programme

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Phase of learning

(Mathisen et al., 2011)

Education

experience Curriculum content Learning objectives

Sensitization Online education

module Introduction to

palliative care Terminology in relation to death and dying

1.Gain knowledge of context, purpose and key terminology relating to palliative care

Personalization Online education

module Values/ assumptions/

experiences 1.Reflect on own experiences of death and dying

Professionalism Didactic talk from

Expert in Field Professional roles &

responsibilities - legal, ethics

1.Gain knowledge of the diverse

professionals involved.

2.Understand the principles of holistic assessment for symptom management 3.Acknowledge the importance of recognizing dying 4.Gather resources to support coping with grief and loss Integration Simulated-learning

experience Clinical/

Communication skills 1.Demonstrate therapeutic

communication skills 2.Apply knowledge of the roles of different team members in an interprofessional team

3.Apply ethical,

professional and

culturally responsive

practice in a

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simulated palliative care case.

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The education programme comprised two timetabled components – online self-directed, an 145

interprofessional face-to-face day. It was included in semester 4 of the students 4-semester (2 year) 146

courses. Prior to this, students had had clinical placements in a minimum of three practice settings 147

which may or may not have included working with people in palliative care. Students began with up 148

to 8-hours of asynchronous online learning from the Palliative Care Curriculum for Undergraduates 149

(PCC4U) freely available resource (http://www.pcc4u.org/). Students were also directed to the New 150

Zealand Ministry of Health Te-ara-whakapiri-principles-and-guidance-last-days-life document. The 151

online content was available to students for 6-weeks prior to an interprofessional study day.

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The study day began with a whole group welcome, then small group (maximum 8 people including 153

one staff member) introductory task where students reflected on their current knowledge of palliative 154

care, as well as their concerns and desires for learning. This was followed by a 2-hour talk from a 155

Palliative Care Nurse Specialist from a local Hospice who covered the experience of death and dying 156

and answered students' questions. In the afternoon, students worked in small interprofessional groups 157

in a simulated learning environment. A summary of the simulation activity is presented in Table 4.

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Table 4. Palliative care interprofessional simulation description

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Structure Student activity Focus / instructions Pre-session Provided with written

information/top tips for successful family meetings to read.

Written information

available as a guide through the scenario, if needed Introduction to

scenario patient Watched a video of a patient – Kirsty with motor neurone disease describing her disease and her worries and reflections of her deteriorating condition and of dying.

Introduction to simulated learning scenario

Introduced to the simulated learning environment – a interdisciplinary outpatient clinic and to the patient and her case history. It was explained that a family meeting is planned to discuss ‘Kirsty’s’

current situation.

Students informed that focus of simulation is not on clinical intervention and knowledge and rather on professional roles,

communication and having difficult conversations.

Scenario – Phase 1 Interdisciplinary pre- meeting

Allocated professionals roles (SLT, DT, physiotherapist, occupational therapist). For each role, students were provided with brief written key information about their own character.

Students were asked to maintain role unless they felt distressed or uncomfortable, but if they needed, they could pause the scenario for support. The educator could pause the scenario at

appropriate points for ‘pause and reflect’ opportunities to allow reflective group discussions before starting the scenario again.

Educators encourages reflection and then repeating a phase for experiential learning.

Students were encouraged to ensure all voices were heard.

Scenario – Phase 2 Family meeting introductions

Family (Kirsty, Kirsty’s husband, sister or mother) and professionals meet. For each role, students were provided with brief written key information about their own character.

Scenario – Phase 3 Family meeting sharing information and developing consensus on treatment options

Swapped roles to give them the opportunity to see the situation from another lens.

Scenario – Phase 4 Family meeting wrap up

Allocated new roles to give them the opportunity to see the situation from another lens.

Students encouraged to

practice comfort, console

and conclude and to ensure

the family does not feel

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abandoned or with questions unanswered.

Debrief Each student can reflect, and speak

within the group. Small group discussion includes self-care and cultural reflections. Students then encouraged to meet and share food and drink at cafe with the whole team.

162 163

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Stage III. Implementation and evaluation of a new palliative care curriculum

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Methods

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All SLT and DT students who were in their final semester of 2-year Masters degree at The University 167

of Auckland in 2019 and 2020 were invited to participate (n= 40 SLT students & n= 38 DT students).

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Consenting students completed the 30-item Frommelt Attitudes towards Care of the Dying Scale 169

(FATCOD) Form B, (Frommelt, 2003) a valid and reliable tool for evaluating attitudes towards end- 170

of-life before the education programme. Despite the potential for socially desirable responding, the 171

FATCOD allowed educators to be forewarned of students with recent experiences of death and caring 172

for a terminally ill person and attend to this appropriately. The FATCOD also provided demographic 173

information in regards to prior experience and beliefs about death and dying.

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SLT and DT students completed an anonymous online survey pre- and post- the education programme 175

and again, 6-months after graduation (approximately 9 months after programme completion). Students 176

self-rated their knowledge of palliative care, death, grief, palliative care practices and roles on a 10- 177

point likert scale. Students also rated their confidence in working with children, adults and older 178

adults who are dying on a 10-point likert scale. Finally, students provided feedback on the education 179

programme and offered suggestions for future changes in curriculum. Findings were tallied and 180

tabulated.

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Results

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Out of 78 students who were educated, 62 completed the FATCOD and pre-education survey, 42 183

completed the post-education survey and 15 completed the post-6 months education survey. Students 184

were predominantly in their 20s and female (4 males). Over 50% reported their religious beliefs were 185

an influence on their attitude towards death and dying and while 16% had previous education on 186

palliative care, many had experience of caring for a terminally ill person (Table 5).

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17 189

Table 5. Phase 3 student demographics (n=62)

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Demographics and experience of death and dying Responses (n=62)

Age (years) 18-22 13

23-27 39

28-35 8

36-45 1

56-65 1

Sex 4 Male (6%)

My religious beliefs… Are a strong influence on my attitude towards death and dying

18 (29%) Are a minor influence on my attitude

towards death and dying 15 (24%)

Do not influence my attitude towards

death and dying 31 (50%)

Profession Speech-language Therapy 39 (63%)

Dietitian 23 (37%)

Previous education on death and dying 10 Yes (16%)

Previous experience with

terminally ill persons I have cared for terminally ill persons and

their family members 17 (27%)

Previous experience of

loss I have lost someone close to me within

the past year 28 (45%)

Present experience I am presently anticipating the loss of a

loved one 9 (15%)

191 192

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18 193

Pre-programme FATCOD scores showed great variation in attitudes towards dying amongst students 194

but with most students believing giving care to a dying person would be a worthwhile experience 195

(Table 6).

196 197

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Table 6. FATCOD scores for Phase 3 students (pre-programme n=68)

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FATCOD Question n* Strongly

disagree Disagree Uncertain Agree Strongly Agree 1. Giving care to the

dying person is a

worthwhile experience. 66 0 0 5 8% 15 23% 46 70%

2. Death is not the worst thing that can happen to a

person. 63 0 12 19% 17 27% 22 35% 12 19%

3. I would be

uncomfortable talking about impending death

with the dying person. 67 3 4% 10 15% 20 30% 34 51% 0 4. Caring for the patients'

family should continue throughout the period of

grief and bereavement. 68 0 1 1% 3 4% 18 26% 46 68%

5. I would not want to

care for a dying person. 66 17 26% 34 52% 11 17% 4 6% 0 6. The nonfamily

caregivers should not be the one to talk about death

with the dying person. 65 6 9% 35 54% 19 29% 2 3% 3 5%

7. The length of time required giving care to a dying person would

frustrate me. 64 20 31% 32 50% 10 16% 1 2% 1 2%

8. I would be upset when the dying person I was caring for gave up hope of

getting better. 66 5 8% 11 17% 28 42% 17 26% 5 8%

9. It is difficult to form a close relationship with the

dying person. 66 19 29% 29 44% 15 23% 3 5% 0

10. There are times when the dying person

welcomes death. 66 0 0 3 5% 37 56% 26 39%

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20 11. When a patient asks,

"Am I dying?" I think it is best to change the subject

to something cheerful. 66 26 39% 34 52% 6 9% 0 0

12. The family should be involved in the physical

care of the dying person. 64 2 3% 4 6% 28 44% 21 33% 9 14%

13. I would hope the person I'm caring for dies

when I am not present. 66 5 8% 22 33% 31 47% 7 11% 1 2%

14. I am afraid to become friends with a dying

person. 66 16 24% 32 48% 9 14% 9 14% 0%

15. I would feel like running away when the

person actually died. 67 10 15% 23 34% 25 37% 7 10% 2 3%

16. Families need emotional support to accept the behaviour changes of the dying

person. 65 0 0 2 3% 28 43% 35 54%

17. As a patient nears death, the nonfamily caregiver should withdraw from his/her involvement with the

patient. 65 14 22% 35 54% 14 22% 1 2% 1 2%

18. Families should be concerned about helping their dying member make the best of his/her

remaining life. 65 2 3% 5 8% 8 12% 35 54% 15 23%

19. The dying person should not be allowed to make decisions about

his/her physical care. 65 35 54% 23 35% 4 6% 0 3 5%

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21 20. Families should

maintain as normal an environment as possible

for their dying member. 64 0 2 3% 25 39% 26 41% 11 17%

21. It is beneficial for the dying person to verbalize

his/her feelings. 66 0 0 5 8% 25 38% 36 55%

22. Care should extend to the family of the dying

person. 65 0 0 3 5% 23 35% 39 60%

23. Caregivers should permit dying persons to have flexible visiting

schedules. 34 0 0 9 26% 8 24% 17 50%

24. The dying person and his/her family should be the in-charge decision-

makers. 66 0 3 5% 4 6% 34 52% 25 38%

25. Addiction to pain relieving medication should not be a concern when dealing with a

dying person. 66 0 4 6% 26 39% 27 41% 9 14%

26. I would be

uncomfortable if I entered the room of a terminally ill person and found

him/her crying. 65 5 8% 22 34% 18 28% 18 28% 2 3%

27. Dying persons should be given honest answers

about their condition. 66 0 0 4 6% 36 55% 26 39%

28. Educating families about death and dying is not a nonfamily caregiver

responsibility. 65 18 28% 30 46% 12 18% 5 8% 0

29. Family members who stay close to a dying person often interfere with the professional's job

with the patient. 64 14 22% 29 45% 13 20% 6 9% 2 3%

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22 30. It is possible for

nonfamily caregivers to help patients prepare for

death. 63 0 0 1 2% 38 60% 24 38%

* note varying numbers per question as some students skipped some questions.

200 201

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23 202

The education programme was well received by students and they gave positive and constructive 203

feedback on the programme that was useful for the educators (Table 7). After the first year of the 204

programme a social, non-educational, gathering at the university café at the end of the study day was 205

initiated, to allow students a place to wind down and diffuse prior to going home. Perceived 206

knowledge and confidence ratings shifted after the training from medians of 3-6 to 5-8 (1=none; 10;

207

excellent) across all domains. Positive shifts in ratings were maintained at 6-months post-graduation 208

(Figure 1).

209 210

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Table 7. Education programme feedback from students

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Education content (1=do not agree, 5=agree) Immediately post-

(Median (Range)) 6-months post- This education programme was well organized 4 (3-5) -

The content was appropriate 5 (2-5) -

The overall standard of instruction was high 5 (3-5) -

The course was highly realistic 4 (2-5) -

The following components of the course were very useful

Online module 4 (1-5) 3.4 (1-5)

Talk from Hospice 5 (2-5) 4.5 (3-5)

Simulations/ role plays 5 (2-5) 4 (2-5) Simulation reflective

discussions 5 (2-5) 4.5 (3-5)

How suitable do you think simulation training will be/ is for teaching how to work with someone who is dying? (1= not at all, 10=very much so)

8 (4-10) 8 (6-10)

Qualitative

content Illustrative quotes –

immediately post Illustrative quotes – 6 months post What did

you like most about the day?

‘the scenarios. I feel a lot more confident about how to approach this topic with clients’

‘the talk from the hospice nurse as she has real experience’

‘how the simulations got us to practice our skills (not be afraid to try things) due to the

comfortable environment’

‘taking theory and being able to practice and then reflect

immediately’

‘getting more comfortable talking about death and dying’

‘The simulations and conversations made it more real. No one is going to be fully confident due to the nature of the topic but the practical situations helped confidence’

‘The role plays and that it was interdisciplinary’

‘The supportive environment in which we learned the content in’

‘. I liked that it included both self- reflection and an emphasis on MDT roles/approach. It was great having students from other disciplines join us.’

What did you like least about the day?

‘the online prep modules took far too long and were unrealistic for Masters students who are busy’

‘that out of necessity it had to touch on very raw emotions’

‘I felt it could touch more on culture’

‘not enough discussions around grief and bereavement’

‘online module – I have zero memory of the online memory’

‘feeling vulnerable as it was a subject that meant my emotions were on the surface’

‘I thought it was all great.’

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If you were

to teach the course, what would you do differently?

‘I did not enjoy the nurse's te whare tapa wha demonstration.

She warned that it would be really confronting and it was!!

The exercise felt uncomfortable as I do not like to purposely imagine what if scenarios especially regarding my own death’

‘since it was over a whole day, I might arrange something light- hearted and fun for the two professions to join in together to redirect difficult emotions before the afternoon session’

‘provide tough questions that the students have to practice

answering in the simulations.

Perhaps ask someone to come in and share their palliative care story/experience and their interactions with the SLTs/DT’

‘more paediatric content’

‘more open discussion time to explore thoughts’

‘more time in simulation’

‘more external speakers who can share their perspectives’

What do you feel you will do differently having participated in this training day?

‘be more confident in a room with a dying person’

‘more holistic with this population’

‘be more prepared’

‘be more willing to engage and list to difficult conversations’

‘communicate with empathy’

N/A

213

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215

Figure 1. Student self-rating of a) knowledge and, b) confidence over time

216

217

0 1 2 3 4 5 6 7 8 9

Rate your level of knowledge of what is palliative care?

Rate your knowledge of death and how someone dies Rate your knowledge of grief, loss and bereavement Rate your knowledge of grief, loss and bereavement in

different cultures

Rate your knowledge of palliative care practices in New Zealand

Rate your level of knowledge of who is involved with someone who is dying and what each person’s roles and …

Rate your knowledge of how to look after your own wellbeing if working with someone who is dying

6-months post Post Pre

0 1 2 3 4 5 6 7 8 9

Rate your confidence of working with children who are dying

Rate your confidence of working with adults who are dying

Rate your confidence of working with elderly people who are dying

Rate your confidence communicating with the different members of the inter-professional team on this topic

Rate your confidence communicating withdrawing treatment from a person who is dying

6-months post Post Pre

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27 218

DISCUSSION

219

We have described a postgraduate education quality improvement project focused on the preparedness 220

of speech-language therapist and dietetic students for working in palliative care. Our students had 221

voiced feeling ill-prepared for palliative care work and this is similarly reflected in other professions 222

with only 42% of US medical graduates feeling adequately prepared to provide end-of-life care on 223

graduation in a 2015 survey (Chen et al., 2015). Students felt ill-prepared in terms of formal education 224

and knowledge of the palliative care legislation in New Zealand but also in terms of their roles and 225

responsibilities and the emotional aspects of working in the field. Interestingly, the content analysis 226

themes that emerged from the 2016 graduates closely aligned with the curriculum components 227

mapped out in published systematic reviews (DeCoste-Lopez et al., 2015; Donne et al., 2019;

228

Fitzpatrick et al., 2017). This encouraged the educators to develop a palliative education programme 229

that covered knowledge, attitude, interprofessional practice and clinical communication skills. The 230

programme was designed to cover these content areas but also reflect published learnings on effective 231

education delivery mapped out in systematic reviews in terms of self-directed learning, didactic 232

teaching and simulated learning opportunities. Blended learning models with theoretical online or 233

didactic learning as well as a practical element are common in the literature (Donne et al., 2019). The 234

programme was well received by students and students gained greater perceived knowledge and 235

confidence after the programme.

236

Student satisfaction

237

Students were positive about the education programme and reported that they enjoyed both the 238

didactic learning and the simulations. They were particularly enthusiastic about the session with the 239

hospice specialist nurse. There is plenty of literature that backs up this positive response to 240

enthusiastic, knowledgeable teachers including those out-of-discipline (Lloyd-Williams & MacLeod, 241

2004). Students asked for more insights from those working in palliative care and wanted to hear from 242

people who have experienced an end-of-life situation where SLTs and DTs had been involved. They 243

also requested more cultural support in terms of death and dying across different cultures and what 244

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28 they needed to know to support families adequately. Positively, 6-months after graduation, graduates 245

who responded to the survey were still in agreement that the programme had provided them with 246

knowledge and confidence. Importantly, with some of them moving into paediatric practice, they 247

reflected that paediatric care advice would also be beneficial. A recent scoping review explored the 248

role of SLT in paediatric palliative care and the authors conclude that there is an absence of guidance 249

in this area (Krikheli et al., 2018). Educators should consider content relating to age and culture in 250

developing education programmes for allied health professionals where the range of populations and 251

workplaces are so broad from acute hospital, community, aged care to specialist school settings.

252

Student preparedness for working with people in palliative care

253

The use of the FATCOD was imperative to gain some insight into the attitudes and experiences of the 254

student cohort prior to the training day. Due to ethics concerns about time taken to complete the 255

FATCOD, students were not asked to repeat the measure post-programme. Many of the students in 256

these allied health clinical programmes came with personal experiences of death, religious and 257

cultural influences on their beliefs about dying and their FATCOD scores display an overall positive 258

attitude towards the value of working in this area. Students valued the role of family in end-of-life 259

care and felt strongly that conversations about dying should be openly discussed rather than avoided.

260

Students demonstrated less concordant ratings on topics related to their own emotional response to 261

being involved in end-of-life and this is perhaps not surprising in two professions where many may 262

not have a desire to work in acute healthcare and may be considering a career in speech and language 263

therapy in mainstream schools or corporate nutritional advisors for food companies.

264

Educators are recommended to remain cognisant of the students experiences of death and dying 265

throughout these sensitive aspects of education and have additional staff present to support upset or 266

distressed students throughout the day and to provide opportunity to debrief formally and causally.

267

Knowledge and confidence scores increased post-programme and as predicted dropped 268

slightly at 6 months follow-up. However, the sustained increase above the baseline measure suggests 269

that for two cohorts of students, the palliative care education programme was effective in increasing 270

their knowledge and confidence.

271

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29

Limitations and future directions

272

As a clinical education research project conducted as part of the ongoing curriculum, the impact of 273

other aspects of clinical and academic education cannot be ruled out. Response rates reduced across 274

time possibly those with a more positive attitude towards the programme, or ongoing links with 275

palliative care, were motivated to respond, particularly at 6-months resulting in response bias. It 276

would have been beneficial to repeat the FATCOD post-programme to gather more detailed 277

information about attitudes at follow-up. More controlled studies in a busy clinical training 278

programme are difficult to conduct as students’ learning needs to be prioritised. Future studies should 279

explore the carry-over of knowledge and skills into clinical practice by assessing students’

280

competency in practice. Feedback from clinical tutors and patients and their families would add 281

insight to the level of competency developed.

282

IMPLICATIONS FOR PRACTICE

283

1 –Self-study, reflection, didactic teaching and simulation/ role-play within a supportive, safe learning 284

environment resulted in positive gains in preparedness for working with people in palliative care.

285

2 – Positive student evaluations of the programme at post-graduation follow-up in the workplace.

286

3 - Mapping curriculum development to the evidence-based scientific literature and to student 287

feedback ensured curriculum met the needs of students.

288

CONCLUSION

289

Palliative care situations are common for speech-language therapists and dietitians and they have an 290

important role in early discussions and decisions regarding nutrition. This longitudinal study followed 291

the development of an education programme for speech-language therapist and dietitian students.

292

Staff developed the programme interprofessionally and incorporated student and graduate feedback.

293

Students were positive about the programme and perceived themselves more knowledgeable and 294

confident in working with people in palliative care. Gains in knowledge and confidence were 295

maintained at 6-months for those who responded to the final survey. Mapping curriculum 296

development to the evidence-based scientific literature and student feedback ensured curriculum met 297

the needs of students. Modality of education materials should be considered with a particular focus on 298

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30 the efficacy of immersive education modalities such as role play and simulated learning opportunities 299

to ensure knowledge and skills are transferred into clinical competency.

300

ACKNOWLEDGEMENTS

301

Thank you to Rajshri Roy and Selena Donaldson for contributions to the Palliative Care

302

education series. Thank you to Alana Brady for interviewing and transcription. Thank you to

303

the students who participated.

304

DECLARATION OF INTEREST

305

The authors have no conflicts of interest and nothing to declare. The University of Auckland

306

DBRF fund supported this research.

307

AUTHOR CONTRIBUTIONS

308

All authors planned, conducted and reported the work. All these contributors gave their final

309

approval of the version to be published and agree to be accountable for the accuracy and

310

integrity of the work.

311 312

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31

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382 383 384

Figure

Table 1. Aspects of learning students valued or wanted to retain or enhance 124
Table 3. Overview of the Palliative Care Education Programme 143
Table 4. Palliative care interprofessional simulation description 161
Table 5. Phase 3 student demographics (n=62) 190
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