Occupational therapy training on palliative and end-of-life care: Scoping review

Identifying the research question

Our question was: What is known about training in palliative and end-of-life care for occupational therapists?

Identifying relevant studies

Searches were conducted in Medline/PubMed, CINAHL, SCOPUS, OTDbase, OTSkeeker, ERIC, and Education. Keywords included “occupational therap*” AND (“end-of-life” OR “palliative” OR dying OR “terminal care” OR “life-threatening illness*” OR hospice OR “terminally ill” OR “life-limiting chronic illness” OR “terminal diagnosis”) AND (education OR learning OR training OR teaching). All peer-reviewed publications before 21 October 2019 were considered. Sources published in other languages than English or French were excluded. The search strategy conducted by the student (CTC) was validated by an experienced librarian in health sciences (Figure 1). The first author (CTC) screened the titles, abstracts, and keywords of publications identified in the literature search for eligibility. The reference list of all eligible publications was manually searched to identify additional publications. The retained publications underwent a full-text review by two members of the team (CTC and AB). In cases of disagreement, a third member (MG) was invited to help reach a consensus.

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Figure 1.

Overall search strategy and selection of papers for final review.

Study selection

To be included in this scoping review, eligible publications had to address palliative or end-of-life care as defined in the introduction. Moreover, publications had to focus on training for undergraduate or graduate occupational therapists, which is defined as the process of learning or teaching the skills and knowledge needed (Cambridge Dictionary of American English, 2008). Publications addressing other members of the interdisciplinary team, without explicitly referring to occupational therapists, were excluded.

Charting the data

The research team collectively developed the data-charting form as proposed by Levac et al. (2010). The first team member (CTC) read each publication and extracted the following information: authors’ name, year of publication, the country where the study was conducted, objectives, methodology, results, key discussion, and concepts relative to training in palliative and end-of-life care.

Collating, summarizing, and reporting results

Thematic analysis was used to synthesize and interpret summaries by using descriptive codes (Paillé and Mucchielli, 2016). Excel was used to store and organize the data and complete coding. The first team member (CTC) identified emerging themes iteratively from the codes. Data analyses were corroborated by the second team member (AB). Emerging conclusions were elaborated in meetings of the entire research team.

Thematic analysis

Relevant literature on the training of palliative and end-of-life care for occupational therapists was mapped around three emerging themes: exposure to knowledge, topics required for competent practice, and educational strategies (Table 1).

Exposure to knowledge. Twelve articles stated that all occupational therapists should receive introductory-level training on palliative and end-of-life care (CAOT, 2011; Warne and Hoppes, 2009; Wilding, 2015) during their undergraduate curriculum (Bye et al., 2009; Dando et al., 2012; Halkett et al., 2010; Hammill et al., 2014, 2017; Kealey and McIntyre, 2005; Maher and Mitchell, 2013; Meredith, 2010; Pearson, 2010). For example, Kealey and McIntyre (2005) mentioned that all undergraduate students in occupational therapy should acquire the knowledge and skills necessary to meet the holistic needs of dying people. In Australia, Meredith (2010) found that 54% of occupational therapists reported having received no training on palliative and end-of-life care, and she concluded that there is still work to be done to improve on the education provided to occupational therapists.

Six papers discussed the importance of increasing training at a graduate level (Australia’s Special Interest Groups, 2015; Bye et al., 2009; CAOT, 2011; Dawson and Barker, 1995; Hammill et al., 2014; Kealey and McIntyre, 2005) whereas two papers focused on postgraduate training (Bye et al., 2009; Davis et al., 2013). For instance, coping with the death of a client and competence in listening could be better learned through practice and experience or at the graduate level (Bye et al., 2009; Davis et al., 2013).

Topics required for competent practice. Occupational therapists should be trained in many topics to prepare them for practice in end-of-life care. Table 1 synthesizes what should be covered, and these topics falls into two categories: (a) knowledge and (b) skills.

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Table 1.

Summary of education topics on palliative and end-of-life care and strategies (n = 27).

Authors (year)	Geographical area	Methods	Undergraduate vs. graduate	Topics required for competent practice	Educational strategies
Ashworth (2014)	Australia	Case report	–	1) Role of occupational therapist2) Broader scope of intervention	–
Australia’s Special Interest Groups (2015)	Australia	Position statement	Undergraduate and graduate	1) Symptom management2) Rehabilitative approach	1) Include palliative care in undergraduate and postgraduate curricula
Bradway et al. (2018)	United States	Pilot study	Undergraduate	1) Professional skills of communication2) Skills of teamwork	1) Interprofessional education
Breen et al. (2013)	Australia	Multiple case study	Graduate	1) Psychosocial factors2) Cultural issues3) Grief	1) Guest speakers2) Palliative care workbooks3) Palliative care CD-ROM4) Explore the personal experience
Bye et al. (2009)	Australia	Monograph (book chapter)	Undergraduate and graduate	1) Professional skills of communication2) Skills of teamwork3) Family-centred practice4) Cultural issues	–
CAOT (2011)	Canada	Position statement	Every occupational therapist	1) Spirituality2) Issues related to end-of-life care	1) Courses2) Workshops3) Interdisciplinary groups
Dando et al. (2012)	United Kingdom	Original research	Undergraduate	1) Role of occupational therapist2) Skills of teamwork3) Philosophy of palliative care	–
Davis et al. (2012)	United States	Qualitative review (phenomenology)	Undergraduate and graduate	1) Professional skills of listening	1) Practice and receive feedback2) Self-reflection on death3) Video footage4) Clinical observations5) Workshops
Dawson and Barker (1995)	Australia	Delphi survey	Undergraduate and graduate	1) Counselling techniques2) Philosophy of palliative care3) Psychology and human behaviour in relation to death4) Pain control5) Medical factors (treatment, medication, diagnoses) 6) Occupational therapy-specific factors (for example use of equipment, creative activities) 6) Cultural issues	–
Essential Yeh and McColl (2019)	Canada	Scoping review	Undergraduate and graduate	1) Practical model, guideline	–
Eva and Morgan (2018)	United Kingdom	Cross-sectional survey	Undergraduate and graduate	1) Role of occupational therapist	–
Halkett et al. (2010)	Australia	Qualitative research	Undergraduate and graduate	1) How to maintain participation in meaningful activities	–
Hall et al. (2011)	Canada	Original research	Undergraduate	–	1) Team Observed Structured Clinical Encounter (adaptation from the traditional Objective Structured Clinical Examination)
Hammill et al. (2014)	Australia	Thematic review (systematic research)	Undergraduate and graduate	1) Disease trajectory2) Role of occupational therapist3) Psychosocial factors4) Ethical and cultural issues5) Self-care, to maintain clinicians’ wellbeing in this demanding role	1) Clinical scenarios2) Exposure, face-to-face contact with clients
Hammill et al. (2017)	Australia	Survey (mixed method)	Undergraduate	1) Disease trajectory	–
Kaasalainen et al. (2015)	Canada	Short report	Undergraduate	1) Skills of teamwork	1) Team Observed Structured Clinical Encounter 2) Clinical scenarios
Kealey and McIntyre (2005)	United Kingdom	Structured interviews and questionnaire (mixed method)	Undergraduate and graduate	1) Role of occupational therapist2) Knowledge and skills to meet holistic needs	–
Knecht-Sabres et al. (2019)	United States	Survey (mixed method)	Undergraduate and graduate	–	1) Clinical practice guidelines2) Advanced specialization courses
Maher and Mitchell (2013)	Australia	Commentary	Undergraduate	1) Roles of other healthcare professionals	1) Include palliative care in undergraduate curricula
Meredith (2010)	Australia	Survey (feature article)	Undergraduate	1) Medical factors (diagnoses, treatments/medication, disease trajectory) 2) Occupational therapy-specific factors (for example impact on function and roles, and interventions) 3) Psychosocial factors (for example death, bereavement, spirituality) 4) Ethical and cultural issues5) Self-care, to maintain clinicians’ wellbeing in this demanding role	1) Video footage2) Guest speakers3) Reflect on their own beliefs about death and dying4) Role plays5) Observation6) Clinical case studies7) Practical stories8) Palliative Care Curriculum for Undergraduates (PCC4U)
Morales-Martin et al. (2012)	Spain	Cross-sectional descriptive study	Undergraduate	1) Strategies for emotional self-control2) Professional skills of communication	–
Noble et al. (2018)	Australia	Qualitative research	–	1) Roles of healthcare professionals2) Dying trajectory3) Skills of teamwork	1) Practical scenarios2) Interprofessional courses
Park Lala and Lammi (2012)	Canada	Editorial	Undergraduate	1) Ethical issues	1) Narrative reflexivity2) Dialogic reflexivity3) Self-reflexive look at one’s own experiences, values and beliefs about death.
Pearson (2010)	United Kingdom	Editorial	Undergraduate	1) Person-centred practice2) Respecting client choice3) Demonstrating sensitive and supportive communication4) Consideration of carers’ and family members’ needs	1) Include palliative care in undergraduate curriculum2) Student placement
Warne and Hoppes (2009)	United States	Autoethnography	Undergraduate	–	1) Student placement2) Clinical instructors can support students
Wilding et al. (2015)	Canada	Editorial	Every occupational therapist	1) Philosophy of palliative care	–
Wittenberg-Lyles et al. (2014)	United States	Original research	Graduate	1) Professional skills of communication	1) Interprofessional courses

Knowledge refers to the theoretical knowledge required to work in palliative and end-of-life care. This knowledge comes from either approach or theory. Knowledge related to approaches includes the philosophy of palliative care, the patient/family-centred practices, and the rehabilitation approach (Baartman and De Bruijn, 2011). Yet, two papers confirmed that the philosophy of palliative care needs to be understood by all healthcare professionals, including occupational therapists (Dando et al., 2012; Wilding, 2015). According to Maher and Mitchell (2013), this knowledge would enable them to identify goals and preferences for palliative and end-of-life care with their clients. Training in patient/family-centred practices also needs to be provided (Bye et al., 2009; Pearson, 2010) just as for the rehabilitation approach (Australia’s Special Interest Groups, 2015).

Training on palliative and end-of-life care should prepare occupational therapists to meet the needs of people living with grief and loss. In three papers, authors suggest that training must include psychosocial factors such as grief, loss, bereavement, spirituality, and achieving a ‘good death experience’ (Breen et al., 2013; Hammill et al., 2014; Meredith, 2010). Occupational therapists should learn the stages of bereavement and what constitutes a good death (Breen et al., 2013). There are cultural differences in relation to grief and death that occupational therapists will face and must deal with (Breen et al., 2013; Dawson and Barker, 1995). Consequently, five papers emphasized that cultural differences regarding end of life should be explored in undergraduate programmes (Breen et al., 2013; Bye et al., 2009; Dawson and Barker, 1995; Hammill et al., 2014; Meredith, 2010). Moreover, palliative and end-of-life care raises numerous ethical issues that should be specifically addressed (Hammill et al., 2014; Meredith, 2010). In addition, four other articles emphasized that occupational therapists should learn about clinical factors such as diagnoses, treatments, medications, and disease trajectory (Dawson and Barker, 1995; Hammill et al., 2014, 2017; Meredith, 2010).

Still in relation to the theoretical knowledge to be learned, Essential Yeh and McColl (2019) proposed in the last year a practical model to guide interventions in palliative and end-of-life care based on occupation.According to these authors, this model should be taught to occupational therapists, as it offers guidelines for care in this field. The model includes five themes: (a) valued occupations as a primary medium of intervention, (b) occupation classified as doing, being, belonging, and becoming; (c) occupation can change; (d) affirming life versus preparing for death; and (e) safe and supportive environment. The model is dynamic and can move forward or backward depending on the trajectory of the terminal illness. For the authors, a model-based clinical education can help occupational therapists improve their professional identity, competence, and confidence to work in palliative care (Essential Yeh and McColl, 2019).

Skills to be taught to occupational therapists fall into two categories: (a) general skills to the profession and (b) specific skills to palliative care and end-of-life care. General skills mainly include teamwork, communication, and listening skills. Since palliative and end-of-life care requires a multi-disciplinary team (Hall et al., 2011), the importance of developing teamwork skills was discussed in five papers (Bradway et al., 2018; Bye et al., 2009; Dando et al., 2012; Kaasalainen et al., 2015; Noble et al., 2018), and four papers recognized that each team member needs to be knowledgeable about the roles of other healthcare professionals (Dando et al., 2012; Meredith, 2010; Noble et al., 2018; Wittenberg-Lyles et al., 2014). Healthcare professionals should be able to consult or refer clients to other healthcare professionals and palliative and end-of-life care specialists when necessary (Maher and Mitchell, 2013; Noble et al., 2018). According to many authors, palliative and end-of-life care requires specialized skills, such as communication and listening skills in a context of terminal illness, and how to address psychosocial and spiritual needs (Davis et al., 2013; Dawson and Barker, 1995; Morales-Martín et al., 2012; Wilding, 2015; Wittenberg-Lyles et al., 2014). Four papers emphasized that all healthcare professionals who work with dying people should master these skills (Bradway et al., 2018; Bye et al., 2009; Davis et al., 2013; Wittenberg-Lyles et al., 2014).

Finally, some specific skills are required to enable a competent practice.These skills arise from the unique role of the occupational therapist in palliative and end-of-life care. In three papers, authors suggest that occupational therapists have a desire to learn more about their own role in palliative and end-of-life care practice (Ashworth, 2014; Eva and Morgan, 2018; Hammill et al., 2014). For example, a survey conducted by Meredith (2010) revealed that occupational therapists feel underprepared to work with people living with a terminal illness because their role is not well-defined. Consequently, according to Ashworth (2014), a broader scope of interventions in palliative and end-of-life care should be taught to prepare occupational therapists to fully assume their potential roles. Halkett et al. (2010) discussed that training should be given on interventions directed at maintaining participation in meaningful activities. Meredith (2010) added that training should be provided on the impact of end of life on a person’s skills and roles.

Educational strategies to learn about palliative and end-of-life care. Many options are suggested to enhance training on palliative and end-of-life care. Table 1 presents what has been found throughout the literature.

Meredith (2010) described which resources are currently used to teach palliative care in six Australian universities, and which other resources are requested by the schools. Many resources are desired by programmes in occupational therapy, including specific video footage concretely showing the practice of occupational therapy in this context (Davis et al., 2013; Meredith, 2010), clinical case studies (Hammill et al., 2014; Meredith, 2010), and role playing (Meredith, 2010). Some teaching resources are already used by some university programmes, such as the Palliative Care Curriculum for Undergraduates (PCC4U), which is a resource kit that was developed for all undergraduate students in any profession who need to learn about the role of palliative care and its principles (Meredith, 2010). Also, guest speakers have been found throughout the literature to be a resource that is either already being used by undergraduate programmes in occupational therapy (Breen et al., 2013; Halkett et al., 2010) or is planned to be used (Meredith, 2010). For example, in some Australian universities, issues of loss and grief are taught by a guest speaker working in palliative care (Breen et al., 2013). In one Australian university, students spend up to 12 hours in direct learning activities given in part by an occupational therapist working in paediatric palliative care (Halkett et al., 2010).

Davis et al. (2013) suggested that teaching listening skills should include methods such as a period of practice, feedback, and promoting self-reflection on the death experience. Three papers reported that these methods should also be incorporated to enhance learning about palliative and end-of-life care (Breen et al., 2013; Meredith, 2010; Park Lala and Lammi, 2012). Moreover, Wittenberg-Lyles et al. (2014) have mentioned that interprofessional courses could be a good way for occupational therapists to learn communication and listening skills. Interprofessional courses along with practical scenarios could be a way to teach teamwork skills (Bradway et al., 2018) and the roles of each healthcare professional (Kaasalainen et al., 2015; Noble et al., 2018).

According to Warne and Hoppes (2009), there are specific strategies that can support students in occupational therapy doing a fieldwork in palliative and end-of-life care. In their autoethnography, Warne and Hoppes (2009) mentioned that occupational therapy programmes have a responsibility to promote a safe learning environment. For Breen et al. (2013), teachers and clinical supervisors should be a model in end-of-life situations; their experiences and ease with the subject could modulate training to occupational therapy students. Occupational therapy students should be encouraged to talk about end of life with their clinical supervisors in order to be more at ease about addressing it with their clients. To do this, Park Lala and Lammi (2012) suggest narrative reflexivity and dialogic reflexivity to allow self-reflection on a student’s experiences, values, and beliefs about death. According to Park Lala and Lammi (2012), narrative reflexivity and dialogic reflexivity are two reflexive approaches that allow students to develop ethical skills and sensitivity to death, both needed when working in end-of-life care. Three other papers emphasized that exposure to clients through face-to-face contact and allowing them to make clinical observations are valuable strategies for occupational therapy students (Davis et al., 2013; Hammill et al., 2014; Meredith, 2010).

According to Knecht-Sabres et al. (2019), clinical practice guidelines should be developed to improve the training occupational therapists receive. Guidelines can be viewed as an educational strategy to teach the role of occupational therapists in palliative and end-of-life care (Knecht-Sabre et al., 2019).

Still, some authors mentioned that the skills needed to work in palliative and end-of-life care come with experience (Bye et al., 2009; Davis et al., 2013). According to Davis et al. (2013), ‘It may be that working in end-of-life care requires insight and skills that only an experienced therapist has acquired and that this area of practice is not suitable for new graduates’ (p. 19).

Study limitations

Titles and abstracts were no-double screened to include or exclude the papers in this scoping study. This methodological choice limits the reliability of the identification process of the relevant studies. To overcome this limit, the first author was more inclusive, retaining the document when ambivalent and increasing the number of documents read in their entirety.

Quality assessment of the papers reviewed or ordering the level of evidence of their conclusions was not performed, in line with recommendations from Arksey and O’Malley (2005) as well as Levac et al. (2010) for scoping studies. Therefore, readers must keep in mind one limit of this review: it does not determine whether specific topics need to be prioritized, or which educational strategies are most robust when training occupational therapists in palliative and end-of-life care, for example. Those are future directions of research.

Finally, only scientific literature was scanned. One book chapter was identified by conducting the search strategy in the selected database (Bye et al., 2009). It was retained for its relevance, since scoping reviews may include grey literature. However, no additional attempt was made to find other textbooks, proceedings, or unpublished work. Although exhaustive, this scoping study is consequently partial. For instance, this review did not include information on the training currently offered by professional associations.