Speech-Language Pathologists and Adult Palliative Care in Australia

Download as pdf or txt
Download as pdf or txt
You are on page 1of 14

International Journal of Speech-Language Pathology

ISSN: 1754-9507 (Print) 1754-9515 (Online) Journal homepage: https://www.tandfonline.com/loi/iasl20

Speech-language pathologists and adult palliative


care in Australia

Laura Chahda, Lindsay B. Carey, Bernice A. Mathisen & Travis Threats

To cite this article: Laura Chahda, Lindsay B. Carey, Bernice A. Mathisen & Travis Threats
(2020): Speech-language pathologists and adult palliative care in Australia, International Journal of
Speech-Language Pathology, DOI: 10.1080/17549507.2020.1730966

To link to this article: https://doi.org/10.1080/17549507.2020.1730966

Published online: 17 Mar 2020.

Submit your article to this journal

View related articles

View Crossmark data

Full Terms & Conditions of access and use can be found at


https://www.tandfonline.com/action/journalInformation?journalCode=iasl20
International Journal of Speech-Language Pathology, 2020; Early Online: 1–13

Speech-language pathologists and adult palliative care in Australia

LAURA CHAHDA1 , LINDSAY B. CAREY2 , BERNICE A. MATHISEN3


AND TRAVIS THREATS4
1
Department of Audiology and Speech Pathology, School of Health Sciences, The University of Melbourne,
Melbourne, Australia, 2Palliative Care Unit, School of Psychology and Public Health, La Trobe University,
Melbourne, Australia, 3Discipline of Speech Pathology, School of Health and Human Sciences, Southern Cross
University, Gold Coast, Australia, and 4Department of Communication Sciences and Disorders, University of St.
Louis, St. Louis, MI, USA

Abstract
Purpose: This research explored the role of Australian Speech-Language Pathologists (SLPs) to identify SLP experiences
and practices regarding adult palliative care (PC) management.
Method: Utilising mixed methods, phase one comprised a literature scoping review of SLP practices in PC. Phase two
involved a survey compiling demographic data of Australian SLPs working in adult PC. Phase three involved in-depth
interviews exploring SLP experiences in PC.
Result: It was found that minimal resources or published literature existed regarding SLPs in PC, however the available
literature indicated SLPs can be valuable and influential members of a PC team. Interviewed SLPs acknowledged their
proficiency in end-of-life communication and swallowing, nevertheless initially they felt ill-prepared given insufficient
knowledge or skills to manage palliative cases based upon their tertiary education and were poorly supported once in the
field given a lack of clinical practice guidelines (CPGs). Participants also noted a lack of knowledge among medical, nurs-
ing and allied health clinicians about a SLP’s contribution to PC, causing barriers for SLPs being professionally accepted
within palliative environments.
Conclusion: Recommendations included the development of improved resources specifically about SLP practice in end-of-
life care, the need for greater exposure at the tertiary level of SLP palliative care practices, and CPGs for SLPs working
in adult palliative care.

Keywords: speech-language pathology; palliative care; dysphagia; communication

Introduction detection and improved treatments for diseases that


It is a certainty that over the next few decades, formerly caused premature death, as well as behav-
Australia will have an increasing proportion of older ioural factors, such as changing lifestyles like smoking
adults. Like many developed countries, this is likely a or a poor quality diet, that increase the risk of devel-
result of sustained low fertility and increasing life oping chronic conditions (Australian Institute of
expectancy (Australian Bureau of Statistics, 2016). Health and Welfare, 2016). The implications of
According to findings from the Australian Bureau of chronic diseases coupled with life-limiting illnesses is
Statistics (ABS) (2016), during the span of the past causing increased pressure on the health care system
two decades (1996–2016), the number of individuals across both specialist and non-specialist settings with
aged 65 and over increased from 12.0 to 15.3%. educational and competency implications for allied
Additionally, “those aged 85 and over almost doubled health professionals (Mathisen, Yates, & Crofts,
from 1.1% of the total population in 1996 to 2.0% in 2011; Morgan, Rawlings, Button, & Tieman, 2019).
2016” (ABS, 2016, p. 7). It is expected that palliative care will play a more
The implication of this increasing ageing popula- prominent role for the ageing population, as well as
tion trend is the inevitable emergence of more chronic other areas of palliative care (e.g. paediatric palliative
and life-long conditions. The increase of chronic con- care; Krikheli, Mathisen, & Carey, 2018; Krikheli,
ditions has been primarily accredited to early Carey, Erickson, Mathisen, & Carey-Sargeant,

Correspondence: Lindsay Carey, Palliative Care Unit, Health Sciences 2, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, Victoria 3083,
Australia. Email: [email protected].

ISSN 1754-9507 print/ISSN 1754-9515 online ß 2020 The Speech Pathology Association of Australia Limited
Published by Taylor & Francis
DOI: 10.1080/17549507.2020.1730966
2 L. Chahda et al.

2020), as the focus of treatment shifts from a rehabili- profile. Participants were recruited through Speech
tative or restorative approach to prevention and relief Pathology Australia (SPA) via the monthly SPA news-
of symptoms associated with life-limiting illnesses letter and again by an announcement of topics and a
(Kelly et al., 2016). poster presentation at the SPA National Conference
(Chahda et al., 2016). Both types of medium pro-
Speech language pathologists and vided a means of distributing an internet link to
palliative care access the survey. Participant information and con-
The literature specifies that persons in palliative care sent were completed online along with the survey
(that is, persons facing a life-limiting or chronic illness using Qualtrics software (QSC, 2002) and subse-
in its advanced stages and/or nearing end-of-life) will quently exported to SPSS for descriptive analysis
more than likely have communication and/or swal- (IBM SPSS, 2017).
lowing difficulties as their illnesses progress; even Following the survey, the third phase involved an
those whose illnesses are not primarily associated investigation into SLP palliative care experiences via
with such impairments (Eckman & Roe, 2005; Kelly the use of in-depth interviews (Minichiello, Aroni,
et al., 2016; Pollens, 2004). Timewell, & Alexander, 1996). The interviews lasted
A limitation when it comes to SLPs fulfilling a role approximately 60–90 minutes in length and explored
in palliative care is that there is insufficient research participants’ opinions, experiences and concerns of
with regard to the practice, issues, and concerns of working in palliative care settings and/or treating per-
SLPs in this area. More fundamentally it would seem sons who are under palliative care management.
that SLPs in Australia, do not currently have any recog- Based on availability and location, the modes of inter-
nised profession-specific protocols and procedures, by viewing included face-to-face meetings, or video link-
which they can contribute effectively or authoritatively ing, or teleconferencing. All interviews were audio
in a palliative care environment (Chahda, Mathisen, & recorded and transcribed verbatim by the first author.
Carey, 2017; Hawksley et al., 2017; Kelly et al., 2016; The second author, working independently, checked
Krikheli, Mathisen, et al., 2018). Given the lack of all transcripted recordings during the coding process
published research and resources of standardised pro- to ensure integrity of the data. While the indepth
tocols or procedures regarding the role of SLPs in pal- interview technique allows for repeated interviews
liative care contexts, there is a need to research the and interviewee verification, this was not required as
current knowledge and practices of SLPs working in there was no discernible ambiguity that needed sub-
palliative care so as to identify the current conventions, sequent clarification when analysing the interview
plus the gaps in knowledge and skill set that should be transcripts.
considered in order to establish evidence-based recom- Given that the field of SLP and palliative care is a
mendations and clinical practice guidelines. newly developing area of research, it was not possible
to utilise existing assessment criteria or protocols to
Aims analyse participant interview responses with regard to
their SLP practice in palliative care. Qualitative data
There were three primary aims that were proposed
was analysed using “open coding” thematic analysis
for this study: (i) To undertake a literature scoping
(Strauss & Corbin, 1997, p. 60) which involved
review of SLP practices in palliative care; (ii) To con-
examining, comparing, conceptualising and finally
duct a survey compiling demographic data and case-
categorising the data into prominent themes
load of SLPs working in palliative care; and (iii) To
(Bryman, 2015). This process commenced after all
conduct interviews to identify SLP experiences and
transcripts had been read and checked for accuracy.
practices regarding palliative care management.
In order to protect the participant’s anonymity, any
personal identifiable information revealed during the
Method in-depth interviews was deleted from transcripts.
Following ethics approval from La Trobe University Two research authors worked independently to
Human Research Ethics Committee (La Trobe identify initial themes arising from participant
HREC S15/244) the research comprised three responses, which subsequently permitted compari-
phases. Phase one comprised a review of the literature sons between coders. McHugh’s (2012) description
pertaining to SLPs practising in adult palliative care. of inter-rater results was utilised to provide agreement
Utilising Arksey and O’Malley’s (2005) literature descriptors. Given McHugh’s concern that agree-
scoping review technique, the entire suite of elec- ment levels between coders below 63% may not be
tronic literature databases (e.g. MEDLINE, considered reliable for health care research, it was
CINAHL, etc.), were searched as well as a range of decided that the minimum agreement percentage
grey literature organisational publications (e.g. via would be set at 64% (i.e. “strong”: 64–81% agree-
CareSearch), for the time period from 1900 to 2016. ment or “perfect/almost perfect agreement:
Phase two involved a survey of Australian SLPs ‘82100%’”) (McHugh, 2012). Two of the key inter-
working with a palliative care caseload which permit- view questions were selected for testing inter-coder
ted the development of a participant demographic agreement which constituted approximately 14% of
SLP and adult palliative care 3

all transcribed material (n ¼ 5186 words/35,636: volunteered to complete a survey. All survey
14.55%). Inter-rater agreement of dominant themes responses (100%) were included in the data collec-
between coders was found to be “strong” (78.2%). tion and analysis. Unfortunately, as there is currently
Further detail is provided within the following no accessible data about how many SLPs work in
results section. adult palliative care, it was not possible to determine
a response rate nor compare overall national data
Result with the research cohort obtained.
Table II depicts the demographic characteristics of
Phase 1: Scoping literature review the responding participants. In overall terms, the
A total of 1264 articles were initially identified that majority of participants were currently practicing as
mentioned SLPs in palliative care. Following a SLPs in palliative care (n ¼ 62: 95%), were members
screening of articles, all duplicates were removed of Speech Pathology Australia (n ¼ 59: 91%), had
(n ¼ 763) plus any other articles were also excluded completed a combined Bachelor/Masters degree
that did not specifically address palliative care and (n ¼ 27: 41%), worked full time (n ¼ 36: 55%), and
related SLP interventions (n ¼ 476), or were tailored the largest category had between one to five years of
to other particular conditions, or failed to be directly experience in palliative care (n ¼ 30: 46%) (although,
relevant to clinical guidelines that were applicable to a in total, the majority of participants had more than
palliative care population (n ¼ 12). This subsequently six to twenty years’ experience: n ¼ 35: 54%) (refer
left a remainder of 13 articles specifically relevant to Table II).
SLPs and palliative care (n ¼ 13). A full description Table III depicts the demographic caseload of
of this literature search has previously been published responding participants. The majority of participants
within this journal providing greater detail for the worked in the public health sector (n ¼ 30: 46%).
reader (see Chahda, Mathisen & Carey, 2017). Predominantly these SLPs worked in an acute
From 2017 to the present date, an additional six (inpatient) setting (n ¼ 19: 29%) (although, in total,
articles (n ¼ 6; refer Table I(b)) have subsequently the majority of participants actually worked in non-
been published (Chahda et al., 2017; Kelly et al., acute/sub-acute settings: n ¼ 46: 71%), with less than
2018; Krikheli, Carey et al., 2018; Krikheli, Mathisen a 20% palliative care caseload (n ¼ 40: 61%)
et al., 2018; Mathisen & Threats, 2018; Pascoe et al., (although, in total, approximately 38% of participants
2018). These were included in this phase totalling nine- had a palliative care caseload of 21% or higher). The
teen articles (n ¼ 19). Arising from this literature, six majority of participants provided care for patients
key themes were identified relating to the SLP’s role in with stroke (32%), neurodegenerative (31%) or a
palliative care, namely: (i) communication, (ii) dyspha- cancer (16%) diagnosis (refer Table III).
gia, (iii) ethical and legal considerations, (iv) consult-
ancy for end-of-life care, (v) emotional and existential Phase 3: Interviews
issues and (vi) conducting research (see Table I).
Of the sixty-five survey participants, nearly a quarter
(n ¼ 15/65: 23%) agreed to take part in the third
Phase 2: SLPs in palliative care practice –
phase of the study, an interview. As interview partici-
demographic survey
pants were assured of anonymity as part of the
A total of sixty-five (n ¼ 65) SLP participants research ethics protocol, a second collection of demo-
involved in palliative care from across Australia graphic data was not undertaken and therefore this

Table I. Thematic summary of speech-language pathologist (SLP) key roles in palliative care.
Theme: Role / Functiona Author / Researcherb
b
Communication (i) Pascoe et al. (2018) ; (ii) Pollens (2012); (iii) Toner and Shadden (2012); (iv)
 Medical team Pollens (2004); (v) Salt et al. (1999).
 Family strategies / facilitation
Dysphagia Pascoe et al. (2018); (vi) Groher and Groher (2012); (vii) Lambert (2012); Toner and
 Swallowing assessments and techniques Shadden (2012); (viii) Roe et al. (2007); (ix) Eckman and Roe (2005); (x)
 Intervention/management Frost (2001).
 Nutrition, hydration and oral feeding
Ethical and legal considerations (xi) Kelly et al. (2018)b; (xii) Smith and Kenny (2015); Groher and Groher (2012);
Lambert (2012).
Consultant for end-of-life care team Pollens (2004).
Emotional and existential issues (xiii) Mathisen and Threats (2018)b; (xiv) Mathisen et al. (2015); Toner and
 Death and dying Shadden (2012).
 Spirituality/Religion
Conducting research Kelly et al. (2018); (xv) Krikheli, Mathisen, et al. (2018)b; (xvi) Krikheli, Carey, et al.
(2018)b; Pascoe et al. (2018); (xvii) Chahda et al. (2017)b; (xviii) Kelly et al. (2016);
Mathisen et al. (2015); Groher and Groher (2012); Lambert (2012); Toner and
Shadden (2012); Roe et al. (2007); Eckman and Roe (2005); Pollens (2004); (xix)
Frost (2001).
Note: Total articles: n¼19.
a
Publications may be listed repeatedly if containing more than one SLP Role/Function – each publication is numerically identified
upon initial listing (i–xix) and sequenced chronologically from the most recent to earlier articles;
b
Additional articles identified since 2017.
4 L. Chahda et al.

Table II. Participant demographic data.


Participant details Resulta Participant details Resulta
Number of participants 65 100% Currently practicing as a speech-language pathologist (SLP)
Yes 62 95%
No 3 5%
Current membership of SPAb State/Territory practicing
Yes 59 91% Victoria 25 38%
No 6 9% Queensland 13 20%
New South Wales 10 16%
Western Australia 8 12%
South Australia 4 6%
Tasmania 3 5%
Northern Territory 2 3%
Years of clinical experience Highest tertiary qualification (Australia)
0–5 years 30 46% Bachelor Degree
6–10 years 13 20% Bachelor Degree/Master Degreec 18 28%
11–15 years 10 16% Graduate Entry Master Degree 27 41%
16–20 years 4 6% PhD 10 16%
20þ years 8 12% Otherd 4 6%
Current workload
Full time 36 55%
Part timee 29 45%
a
Percentages rounded to the nearest whole number.
b
SPA: Speech Pathology Australia.
c
Bachelor/Master Degree or Graduate Entry Master are both entry-level qualifications.
d
Otherhighest tertiary qualifications included: Research Masters and Bachelor Degree with Honours.
e
Part time includes SLPs employed casually.

Table III. Speech-language pathologist participant caseload (n¼65).


Participant caseload Resultsa Participant caseload Resultsa
Number of Participants 65 100% Health sector
Current caseload Public 30 46%
Adult 40 61% Private 25 38%
Combination (Adult and Paediatric) 18 28% Both 7 11%
Otherb 7 3% Otherc 3 5%
Primary work setting Percentage of palliative caseload
Acute (Inpatient) 19 29% 1–20% 40 61%
Community health 14 22% 21–40% 13 20%
Rehab (Inpatient/Outpatient) 13 20% 41–60% 3 5%
Aged care 7 11% 61–80% 3 5%
Private practice 6 9% 81–100% 6 9%
Sub-acute (Inpatient/Outpatient) 6 9%
Diagnosis
Stroke 21 32%
Neurodegenerative 20 31%
Cancer 10 16%
Dementia 6 9%
Otherd 8 12%
a
Percentages rounded to the nearest whole number.
b
Other included combination of adult and paediatric caseload plus management role.
c
Other Health Sectors included: Community, Not for Profit Organisations.
d
Other diagnoses included: respiratory illness, developmental disorders, traumatic brain injuries or mixed diagnoses.

phase was purely reliant upon the thematic data the client was identified as palliative or commencing
derived. Following open coding several themes and palliative care treatment to coincide with their current
sub-themes were identified, namely: (i) Defining the care plan, SLPs should be involved in several avenues
role of SLPs in palliative care, (ii) clinical experience in of intervention to provide care for clients. From the
the field of palliative care, (iii) the value of SLPs in a pal- participant responses, seven key areas of SLP input
liative care context, (iv) SLP knowledge and skills could be identified that contributed to the overall
required for palliative care, (v) emphasis on palliative care role of SLPs in palliative care. The key areas were:
education, (vi) the need for specific clinical practice guide- (i) advocacy, (ii) identification for SLP intervention,
lines for SLPs working in palliative care. The associated (iii) assessment, (iv) management, (v) support, (vi)
subthemes are presented in Table IV. Each theme is counselling/consultancy and (vii) education (see
discussed below. Table V).
While each of the key areas identified were consid-
ered important for a SLP to provide care for the cli-
Themes
ent, it is important to note that a number of
Defining the role of SLPs in palliative care interviewed participants emphasised that the primary
This theme highlighted what participants believed to areas of SLP input into palliative care were not, how-
be the defining role of SLPs in palliative care. There ever, just for clients, but also advocating and provid-
was a general consensus across participants that once ing support, counselling and education for the client’s
SLP and adult palliative care 5

Table IV. Core themes and sub-themes identified from the qualitative data.
Themes Sub-themes
1. Defining the role of speech-language pathologists (SLPs)  Advocacy, identification, assessment, management, support,
in palliative care counselling/ consultancy, education
2. Clinical experience in the field of palliative care  Early clinical experiences in palliative care
 Later clinical experiences in palliative care
3. The value of SLPs in a palliative care context  Team support for SLPs working in palliative care
 Exclusion of SLPs from the palliative care team
4. SLP knowledge and skills required for palliative care  Essential SLP knowledge and skills required for palliative care
 Non-essential SLP knowledge and skills required for palliative care
 The suitability for SLPs to utilise videofluoroscopic swallow studies
(VFSS) in palliative care
5. Emphasis on palliative care education  Exposure to palliative care
 Tertiary palliative care pedagogy
6. The need for specific clinical practice guidelines for SLPs  Lack of documentation
working in palliative care  The responsibility to create palliative care clinical practice guidelines
for SLPs

Table V. Summary of speech-language pathology roles in palliative care.


speech-language pathologist (SLP)
involvement Definition
Advocacy  Advocating for the client to receive palliative care input based on swallowing, and
communication status.
Identification  Identifying the need for SLP input or for a change in current management to promote
comfort and client preferences as opposed to strictly rehabilitative goals.
Assessment  Assessing client swallowing, communication and cognitive abilities across the palliative
continuum to monitor changes.
Management  Creating a management plan for the client to ensure person-centred care and comfort are
implemented and augmented as the client needs and abilities change.
Support  Supporting and advocating for the client to receive the level of care and honour personal
preferences in swallowing and communication that are guided by experienced SLPs.
Counselling/Consultancy  Providing educational counselling and emotional support for both the client and families in
adjusting to swallowing and communication changes relating to their disease or disease progression.
Education  Educating the client and families to empower them to become actively involved in
swallowing and communication management (i.e. feeding/communication strategies).
 Educating the multidisciplinary team regarding swallowing and communication management
plus the role of SLPs – what they can offer to the palliative team and when to refer.

family and members of the multidisciplinary team. As their role in palliative care altogether. One partici-
one participant described: pant noted:
We’ve [SLPs] got a really big role in educating the I remember being a new grad and seeing someone who
nursing staff about our oral care and supporting was made palliative and kind of going, “What do I
families to do oral care with taste or oral care just for do?” There was nothing I could do … “What do I do?”
comfort and actually talking to the family about how … And that may have been reinforced a little bit by
important that is for maintaining comfort but also the senior [SLP] I had at the time, who just said, “Oh
giving them [the family] reassurance … [P2]. you document this, this, this and this and then you’re
not involved anymore”. And … so that was kind of
the approach that I had a lot of the time … ’ [P4].
Clinical experience in the field of palliative care
As participants recounted their experiences in pallia- (ii) Later Experiences: The participants who had been
working in palliative care or had exposure to palliative
tive care, a discernible difference was noted with
clients for extended periods of time reported different
regard to participant’s early experiences in palliative
experiences and were clearly more confident and
care (approximately less than 5 years’ experience)
intentionally proactive. These participants reported a
compared to having worked in the field of palliative
sense of personal reward from working in palliative
care for extended periods of time (approximately 5
care so as to assist their clients with their end-of-
years or more). This theme was therefore further bro-
life wishes:
ken down into two sub-themes; (i) early clinical expe-
riences in palliative care and (ii) later clinical It [working in palliative care] showed me what we
experiences in palliative care. [SLPs] could do at different points … for different
people [patients], being able to educate and prepare
(i) Early experiences: The early experiences of clini- people [patients] for changes that were going to
cians as a new graduate or for those who were new to happen. In a particular scenario I was doing work
the field of palliative care revealed that many had with an oncology caseload that had a strong
similar involvements with a multidisciplinary team. palliative component … so I really started to feel that
Participants reported that their early experiences of importance to be there and to provide some of that
palliative care incited feelings of rejection, insecurity, forward information and make good plans, obviously
and at times self-doubt, leading them to question in consultation with their [the patient’s] managing
6 L. Chahda et al.

team … so that’s very much taken me to where I am two later to see that either the doctor has overridden
now which is very patient-responsive and it’s not just what I had said anyway, or that no one has actually
“hands off”. It’s exploring with the patient what’s heeded my advice and just continued doing their own
right for them and what they need at different points thing. So, it’s almost like, on the surface, they [the
in time [P4]. medical team] want to appear that they appreciate
and value our input, but then they will ignore what
we have to say anyway … like they [the medical
The value of speech-language pathologists in a pallia- team] are just ticking the box to say that they went
tive care context as far as getting speech path input … but then don’t
Stemming from the previous theme, participants were really rate or care what that input was … [P13].
asked to delve deeper with regard to their views on
whether they felt valued and appreciated by the multi- Interestingly, nurses were considered both a source
disciplinary (MDT) or medical team when it came to of great support for SLPs working in palliative care
SLP involvement in palliative care. The overall consen- and at times considered a hindrance in the case of
sus from the participants in the study was that the SLPs wanting to offer their expertise in palliative care
majority believed that from a SLP standpoint, they cases. As one participant noted:
could recognise the value of their input in palliative
care cases, however, whether they felt valued from the I think some nurses are great and do really see the
multidisciplinary or medical team varied greatly. value in our input, but it’s definitely not every nurse I
Through the course of the interviews, it became see. Sometimes I get consulted and see palliative
clear that participant responses were somewhat div- clients with huge support backing me and other times
ided between participants citing experiences where I get told to pack up and leave because it’s not my
their presence in palliative care contexts was wel- place to be there … so it’s really variable [P13].
comed, compared to other participants reporting sig-
nificant exclusion from palliative care cases. This
SLP’s knowledge and skills required for palliative care
theme, therefore, branches into two sub-themes to
Participants were asked to identify what particular set
illustrate the different treatment that participants
of knowledge and skills were required in order to
experienced in their clinical practice, namely (i) team
assess and manage a palliative care case. All partici-
support for SLPs working in palliative care and (ii)
pants reported that there were certainly skills that
exclusion of SLPs from the palliative care team.
were deemed “essential” in palliative care and skills
(i) Team Support: The participants who did feel val- or procedures that were deemed as non-essential.
ued and included in palliative care cases reported that Overall the essential skills and knowledge that the
their key supporters were primarily from their own participants seem to align was largely based on being
colleagues and seniors in the speech-language path- able to adjust their standard assessment and manage-
ology department, then the nursing staff, and dieti- ment of communication and swallowing intervention
cians. As one participant reported: to a palliative care situation. In order for SLPs to
obtain the opportunity to develop their clinical skills
I think first and foremost my greatest support comes to attend to a palliative client in the future, supervi-
from my [SLP] colleagues and seniors and certainly sion, mentorship and/or peer-group consultation
most nursing staff do really appreciate our input and should all be considered (Carey-Sargeant &
I find they will often pull me aside or call me to Carey, 2012).
discuss their concerns with their palliative clients or Similar to other conditions, such as neurodegener-
seek advice particularly in reference to risk feeding ative or chronic illnesses, palliative care clinical prac-
and oral hygiene. Dieticians also would be considered tice would require becoming less formalised in their
a close supportive colleague as we do tend to see clinical approach and augmenting speech pathology
some referrals coming through from their behalf to goals from strictly rehabilitative to consider “risk-
see palliative clients [P5]. feeding” as well as “comfort-based” which would be
(ii) Exclusion of SLPs: For those participants who did mainly driven by client preferences. In addition, a
not feel supported or included by the medical or sound knowledge of swallowing and communication
multidisciplinary team, their experiences revealed a was identified as necessary in order to adjust SLP
different story where participants felt that their rec- clinical assessment and management to accommo-
ommendations were going unnoticed or ignored. For date to a palliative client’s needs or overall clinical
example, one participant recalled: presentation:

I suppose the feeling that I’m not supported in I think already having a good, sound knowledge of
palliative scenarios would firstly be that I was never dysphagia assessments and basic functional
referred to the patient to begin with, but let’s just say communication assessments are really important. I
that I am … sometimes … I will go in and put forth think in order to take on a palliative client or caseload,
my recommendations and then come back a day or if you [SLPs] don’t have those skills fine-tuned, then I
think you will have a lot of difficulty knowing what to
SLP and adult palliative care 7

look for if the client is unable to participate as readily, their clinical experience. Participants described that
or can’t communicate or too drowsy etc. Certainly, you the focus of their coursework and clinical experience
[the SLP] have to adjust your assessments as well so was primarily based on a rehabilitative model or more
these [assessments] might become more informal or basic clinical presentations. There were a few partici-
observational in nature but you [the SLP] need to pants who indicated some exposure to palliative care
know how to work off that limited information you lectures or death and dying teaching units at univer-
receive and make a judgement call on what you think sity or during their clinical placements, however, they
that patient requires [P8]. largely credited external studies or elective subjects1
that deviated from what the standard speech-
A common theme that did arise in these conversa-
language pathology course offered.
tions was the debate on whether the instrumental
swallowing assessment, that is, Videofluoroscopic Nothing that was specifically raised in my speech
Swallow Studies (VFSS) was essential or not and pathology training … it was only because I enrolled
whether it was even appropriate to use with the pallia- in a specific death studies elective of my own
tive population. Interestingly, other instrumental choosing that I had some exposure to the notion of
swallowing assessments (e.g. Fiberoptic Endoscopic palliative care and death literature but if it wasn’t for
Evaluation of Swallowing [FEES]) were not consid- that, then I would have had nil exposure to the idea
ered as a tool regularly used in palliative care settings of death and dying at a tertiary level [P11].
according to the interviewed participants suggesting
(ii) Tertiary palliative care pedagogy: There was clearly
several barriers (e.g. cost, ENT sign-off, training and
a general consensus among participants that more
competency maintenance etc.), which subsequently
emphasis on palliative care should be provided at uni-
meant that VFSS tended to be utilised more readily if
versity. However, the method (e.g. via classroom dis-
instrumental evaluation of swallowing was required. cussion, clinical rotations, etc.) and level of exposure
Approximately half of the participants were in agree- varied greatly among participants. As one participant
ment that the use of VFSS in palliative settings was, pointed out, every client has the potential to
more often than not, unnecessary: become palliative:
I also think more extreme methods of assessments,
Well I think education should be brought in at a
say, videofluoroscopy would be seldom used for this
tertiary level regarding palliative care because in
kind of population because you generally know that reality every patient you see, particularly adult or
they [palliative patients] are at risk of aspiration or those who have a neurodegenerative disease has the
that they certainly cannot tolerate some diet options potential to die. So I think a lecture or even a case
or fluids, so what more would a videofluoroscopy study to outline the steps taken to manage a client
bring to the table? [P7]. like that would be really invaluable for the student.
Yet other participants, however, felt that VFSS But of course, with such a grey area like palliative
could be beneficial in palliative care settings. As one care, you can probably only go so far in terms of
participant reported that VFSS could possibly be educating students with problem-based cases or
used as a means for educating the clients: lectures, eventually they should be exposed to
palliative clients in person under the guidance of a
I think in some cases though, videofluoroscopy might senior clinician – I think dual teaching methods are
be a benefit if used for education. Like say, early MND really important for this field of work [P15].
(Motor Neurone Disease) in a community setting and
educating the patient with a video … [P6]
The need for specific clinical practice guidelines
The discussion of SLP reliance on Clinical Practice
Emphasis of palliative care education at university Guidelines (CPGs) with regard to palliative care eli-
The participants’ tertiary education was discussed at cited varied responses from participants. The partici-
length in the interviews in order to identify the level of pants in this phase of the study reported not having
exposure and knowledge participants had regarding any documentation per se and largely based their clin-
assessing and managing palliative care cases prior to ical management of palliative care clients on either
entering the workforce. Additionally, the discussion their senior’s recommendations or their own judge-
also focussed on what the participants felt needed to be ment. As one participant described:
included for future speech-language pathologists dur-
I tend to rely on my colleagues and seniors first and
ing their tertiary education in order to prepare them for
foremost and then my own clinical experience. I
a palliative care caseload. This section was therefore
mean, I have been practicing in this area for quite a
broken down to two sub-themes; (i) exposure to pallia-
number of years now so I’ve come to trust my own
tive care and (ii) tertiary palliative care pedagogy.
judgement, made close relationships with the medical
(i) Exposure to Palliative Care. There was a general and nursing team so now I feel quite confident in
consensus among the participants that palliative care managing a palliative client. But in terms of
was rarely mentioned in their coursework or during
8 L. Chahda et al.

documentations or guidelines … I mean, I don’t even Discussion


know of any current guidelines to be honest … [P13].
Speech-language pathologists managing palliative
All participants agreed that there was a significant care cases across Australia who participated in the in-
need for a Clinical Practice Guideline (CPG) that depth interviews all appeared to agree on similar role
would guide SLPs working in palliative care. functions, regardless of the workplace setting (e.g.
However, what the participants wanted from the hospital, inpatient/outpatient, community etc.). The
guidelines varied somewhat ranging from step-by- role of SLPs was narrowed down to seven main crite-
step protocols to more wide-ranging guidelines. ria: (i) advocacy; (ii) identification; (iii) assessment;
Other participants mentioned the importance that (iv) management; (v) support; (vi) counselling/con-
CPGs would have on defining the role and parame- sultancy; and (vii) education.
ters of SLPs in palliative care for not only the speech
pathology department but for the managing medical Advocacy and identification
and allied health team:
The SLPs interviewed during the study agreed that
So yes! Absolutely. I feel this is a crucial thing to initial advocacy for the client to receive palliative care
happen for speech paths in order for us to have more services was essential. It was noted that in the area of
direction and confidence in taking on palliative cases. communication and swallowing, SLPs can identify
And I think it is sort of like a chain reaction, if we the deterioration and potential trajectory of commu-
have more clarity and direction in what services we nication and swallowing abilities that may indicate a
can offer for our palliative clients then we can need for palliative care services. This was an aspect of
educate the medical and allied health teams which the SLP role that had not been previously highlighted
then in turn will improve their understanding in how as important within the palliative literature (e.g.
they can use our services and refer to us more Pollens, 2012; Roe & Leslie, 2010). It has been
appropriately and in a timely manner [P4]. argued however, that allied health professionals tend
to know their clients better than physicians with
Conversely, while one can argue that the current regard to treatment goals, values and expectations
situation is dire without clear clinical practice guide- (Chen, Farwell, & Jha, 2009).
lines, nevertheless concerned participants also raised In the case of SLPs, it is likely that they will iden-
a warning that the guidelines cannot be too prescrip- tify communication and swallowing deficits or
tive and need to be accommodating for every client’s ongoing deterioration that can contribute to under-
individual needs: standing the client’s likely trajectory and possible
I wonder how … I mean people are so varied and eventual palliation (Chahda et al., 2016). This is
patients are going to be managed differently even if partly due to the fact that allied health professionals
they’ve got the same conditions so how would you (i.e. speech-language pathologists, occupational
describe something in those guidelines around risk- therapists, physiotherapists), spend more time with
feeding. I guess it’s around patient’s previously their patients than physicians (Chahda et al., 2017;
expressed wishes, you know, what the family think Chen et al., 2009), which is likely to be increasingly
and things like that to guide clinicians … but it so, as palliative care becomes more community orien-
couldn’t be too prescriptive, I guess what I’m trying to tated (Abel et al., 2013). It has been noted that this
say is that palliative care especially is not a “one size additional time encourages the combination of com-
fits all” approach but having information there passion, empathetic and active listening, relationship
around legal … maybe even some advice around forming, technical competence and caring – all of
communication – how to communicate with patients, which have been shown to result in increased trust in
sort of how to have those difficult conversations [P7]. allied health professionals (Manderson & Warren,
2010). Subsequently, allied health professionals may
When the participants were questioned on whose be involved with advocating for their patients in add-
responsibility it was to create or provide these guide- ition to preserving quality of life (Carr, 2005; Caty,
lines the overwhelming consensus was that Speech Kinsella, & Doyle, 2015). It is then considered prob-
Pathology Australia (SPA) would be the ideal organ- able that SLPs can have a role in advocating for pal-
isation to develop and distribute a new clinical prac- liative care services for their clients while identifying
tice guideline for SLPs working in palliative care: either a need for increased SLP input or a change in
the current management plan ensuring that the cli-
I think SPA (Speech Pathology Australia) is the way to
ent’s preferences (with regard to swallowing and com-
go because all previous documented clinical practice
munication) and end-of-life goals are identified
guidelines have been collaborated, assembled and
and met.
distributed by SPA … I don’t see why palliative care
guidelines would or should be any different. I think
Assessment
especially if we want to be taken seriously like all
other guidelines, it needs to be recognised and Assessment of a palliative client’s swallowing, com-
approved by SPA [P7]. munication and cognition was considered standard
SLP and adult palliative care 9

practice for SLPs, similar to any adult client present- Support, counselling and education
ing with speech, language or swallowing difficulties.
Educational counselling and emotional support are
Assessments required no specific variations for a pal-
also needed for both the client and their families in
liative client aside from the addendum that assess-
adjusting to swallowing and communication changes
ments may need to be completed sequentially
as the client’s health status deteriorates or the disease
depending on the client’s cognition, arousal and
progresses. It was also considered important by SLPs
strength levels (Radtke, Baumann, Garrett, & Happ,
to educate the client and the family in order to
2011; Wagner, 2008). It was also argued that assess-
empower them to be more autonomous and actively
ments may need to be implemented across the con-
involved in swallowing and communication manage-
tinuum of a palliative client’s journey to monitor and ment. Moreover, education for the multidisciplinary
address any changes in function. Management of team concerning what SLPs can offer in palliative
communication and swallowing appeared to be a care settings was also considered a necessity. This was
“grey” and complex area for the participants as many reflected in the previous literature indicating that the
believed that continuation of regular eating and consultative aspect of the SLP role was very import-
drinking for the palliative client was paramount. ant and more often than not, was most widely used in
However, the participants were not certain of the SLP palliative care management compared to a prac-
legal ramifications allowing a palliative client to con- tical or “hands on” approach to palliative clients
tinue their eating and drinking preferences if there (Chahda et al., 2016; Smith & Kenny, 2015).
was a heightened choking or aspiration risk. Other With regard to SLP experiences and perceptions of
participants advocated for diet modifications to working with individuals who are palliative, it was
ensure ongoing comfort for the client. Though these noted that the experiences of those who had been
modifications were reported to be kept to a minimum working in the field for some time were distinctly dif-
and were not enforced to ensure complete swallowing ferent from those who were either new graduates or
safety (i.e. no aspiration or choking risk), nevertheless new to the field of palliative care. Clinicians who were
these were implemented to ensure improved comfort new to the area of palliative care or who had little clin-
for the palliative client. ical experience reported feelings of doubt and inse-
These findings were consistent with the literature curity in their role in palliative settings. This was
which highlighted that regular monitoring of cogni- mainly due to the poor preparation SLPs felt they
tion, communication and swallowing changes were had had received from their tertiary education and
vital when managing a palliative client (DeLegge, because of the treatment SLPs encountered from the
2009; McNamara & Kennedy, 2001). The ethical other members of the medical team and allied health
implications of feeding with risk or the implementation team which included moments of rejection and disre-
of alternative methods of nutrition delivery (e.g. tube gard for the value that SLPs could bring to a palliative
feeding), are still largely debateable with no steadfast care setting. These findings were consistent with the
rules or relevant Australian governing professional literature that explained that SLPs are still very new
bodies (e.g. Speech Pathology Australia) that could to the field of palliative care and the skills and know-
provide a definitive guide in this area of practice ledge that a SLP can bring to a palliative setting are
(DeLegge, 2009; McNamara & Kennedy, 2001) – still largely unknown to the medical and allied health
although it is noted that a SPA working group is cur- team (Collis & Bloch, 2012; Hawksley et al., 2017).
rently developing risk feeding guidelines (SPA 2019). Though the experienced clinicians felt more com-
With regard to communication, many participants fortable in palliative scenarios, they still faced barriers
acknowledged the need for communication monitor- to effectively become a recognised member of the pal-
ing and intervention at end-of-life. However, the par- liative care team. Frustration stemming from late or
ticipants did not highlight any specific management complete lack of referrals as well as having their rec-
considerations apart from the use of alternative and ommendations unheeded or overruled by the medical
augmentative communication (AAC) when required. team also contributed to the current negative SLP
This is similar to the findings reported by Krikheli, experience in palliative care.
Carey, Huynh, and Tresca (2017) who identified that These experiences were reflected in the literature
SLPs also utilised AAC in paediatric palliative and repeatedly, highlighting the lack of understanding of
end-of-life care communication. Of course, caution the role of the SLP in palliative care by other allied
should be used when extrapolating information from health staff and the medical health care team (Kane-
paediatric populations given that using AAC in paedi- Miller & Willging, 2012; Pollens, 2004, 2012). This
atric settings requires additional developmental com- then propagated late referrals or no referrals to the
munication considerations. Further research is thus SLP which in turn resulted in SLPs being considered
required with regard to adults in palliative care and unsuccessful with regard to making any noteworthy
their specific communication considerations particu- change for the palliative client, thereby resulting in a
larly with respect to the amount and manner of how further decline in referral rates (Kane-Miller &
AAC systems – both high and low technology – are Willging, 2012; Pollens, 2004, 2012). This seemingly
and can be utilised. vicarious cycle was emphasised by Hawksley,
10 L. Chahda et al.

Ludlow, Buttimer, and Bloch’s (2017) research, high- other considerations (e.g. experience, self-care, refer-
lighting that if support was provided from the allied rals, multidisciplinary awareness, etc.). The current
or medical care team, SLPs can be more confident study, therefore, helps to fundamentally clarify the
about where and when their input is necessary in pal- role of SLPs and the future requirements needed to
liative settings, thereby becoming a valuable team practice proficiently in adult palliative care. Thus, it
member in end-of-life care particularly pertaining to adds to developing research with which to assist the
the areas of communication and swallowing. production of uniform clinical practice guidelines and
resources for SLPs across Australia and perhaps
SLP knowledge and skills internationally.
This approach also permitted a deeper examin-
It was noted by participants that if SLP knowledge
ation of what resources and strategies are required to
and skills were not adequately developed prior to
not only equip SLPs to work proficiently and assert-
entering palliative care settings, then clinicians could
ively in palliative care but also to gain recognition by
expect to encounter difficulties when obtaining infor-
the palliative, medical and allied health team, that
mation from a client who cannot communicate effect-
SLPs can make an important contribution to the pal-
ively or is too lethargic to participate fully. The
liative care team. Furthermore, this study also consid-
responsibility then falls on the SLP to make a clinical
ered the needs and skill requirements for SLPs who
judgement on what they believe the client needs in
have worked in palliative care for an extended period
terms of assessment and implementation of therapy
of time, SLPs who are new to the field of palliative
goals. This viewpoint indicates that perhaps palliative
care, as well as new graduates entering the workforce.
care settings are not appropriate for new graduates
While recognising the strengths of this study, it is
entering the workplace or for clinicians who are not
also important to be mindful of the limitations. The
entirely confident in their clinical or decision-
use of interviews was a preferred method of choice,
making skills.
allowing the researcher to obtain a comprehensive
The complication however, that arises from such a
range of views from SLPs currently working in pallia-
viewpoint, is that if new graduates are prohibited
tive care in Australia. However, the gathered data was
from working in palliative care scenarios, then how
only able to indicate a range of views, not prevalence.
will they obtain the opportunity to develop their clin-
In addition, due to the perceived small number of
ical skills to be able to attend to a palliative client in
Australian SLPs currently working in palliative care,
the future? This debate was not discussed at length in
the findings cannot be generalised to all palliative pop-
the literature nor was a conclusive recommendation
ulations or situations (e.g. paediatric palliative care).
provided in terms of where and when a clinician who
This is important when taking into account the fact
is new to the field of palliative care should be able to
that SLP clinical practices in palliative care are idio-
treat a palliative client. This raises an important point
syncratic, depending on the individual, their environ-
as to whether this is an advanced area of practice or
ment (e.g. hospital, home, aged care facility etc.) and
one that is considered entry-level – an issue that needs
their trajectory (e.g. treatment plan, prognosis, etc.).
to be investigated further – however either way, as
If time and financial resources had permitted, it
noted earlier, strategies such as supervision, mentor-
would have been ideal, rather than undertaking inter-
ship and peer-group consultation can assist with the
views, to have engaged focus groups within every
development of knowledge and skills (Carey-
state in Australia and across the different palliative
Sargeant & Carey, 2012).
care domains (e.g. aged care facilities, home hospice,
public and private hospitals). In addition, as the pri-
Limitations
mary aim of this study was to eventually set the
The design and execution of this study had a number groundwork for future CPGs for SLPs working in
of advantages, particularly given the limited quantita- adult palliative care, focus groups comprising key
tive and qualitative studies in this area of research stakeholders could have also served as a “panel of
(Chahda et al., 2017; Hawksley et al., 2017; Pollens, experts” utilising a Delphi method to agree on best
2012). Firstly, and perhaps most obviously, this practice considerations and recommendations when
research makes a meaningful contribution to under- assessing and managing palliative clients (Krikheli,
standing the current role of SLPs in palliative settings Mathisen et al., 2018).
across Australia by exploring the skills and knowledge Researcher bias is another factor to consider, as
of SLPs who work in palliative care settings. This the interviews were conducted by the primary author,
research also highlights the various issues that are who is a certified practicing speech-language patholo-
either inhibiting SLPs from working effectively and gist and therefore may have reflected the researcher’s
confidently in palliative care settings or actually pre- interests. Also, researcher time constraints and the
venting SLPs from working in the field of pallia- overall aim of the study, may have directed and con-
tive care. trolled the length of responses any participant may
Further this current study had multiple foci – not have had which in turn could have potentially altered
only upon education and training requirements but the participant’s overall response.
SLP and adult palliative care 11

It is also important to acknowledge Australian would prefer concerning SLP information and inter-
cultural considerations which might have influ- vention. Ideally, given the increasing universality of
enced the results which need to be further palliative care, research needs to be completed across
researched such as (i) Australia being a high countries allowing an international comparison of
income Westernised country with insurance/gov- SLP practice within palliative care systems.
ernment coverage of palliative care services, (ii)
Conclusion
cross-cultural diversity and (iii) spiritual/religious
and secular factors affecting perspectives about While it can be argued that additional research should
palliative care and the death and dying process. and can be undertaken, there is, indisputably, a role
Finally, future research with regard to SLP for SLPs in the field of adult palliative care, particu-
involvement in palliative care should also include the larly in the domain of communication and swallow-
opinions of medical teams and carers and what they ing. However, the current attitudes and knowledge of

Table VI. Summary table of recommendations for incorporating speech-language pathologists (SLPs) in palliative care.
Summary recommendations: the role of SLPs in adult palliative care
Recommendations Summary key points
Recommendation one:  Uniform and standardised clinical practice guidelines (CPGs) need to be established
Development and endorsement of across Australia – distributed by professional organisation.
uniform clinical practice guidelines by  Target assessment and management of communication and swallowing.
speech pathology Australia  Flexible framework to accommodate person-centred care (PCC).
 Outline ethical/legal considerations (e.g. risk feeding).
 Outline boundaries of practice (e.g. counselling).
 Guidelines should be promoted in all national, state and local governments, including
health care institutions and professional associations.
Recommendation two:  Collaboration between clinicians working in the field and academics to produce current
Ongoing research and creating research and resources.
resources for SLPs in palliative care  Resources need to be specific for SLPs and palliative care practice that can be applied to
different palliative environments/services.
 Resources need to be tangible and flexible to accommodate for a range of clients and
clinical scenarios.
 Resources/research should be inclusive of both swallowing and cognitive/
communication deficits.
Recommendation three:  Ongoing promotion and awareness of the SLP role required for the medical, nursing and
Educating health professionals on the allied health team.
role of SLPs in palliative care  Education should be targeted in a two-pronged approach (in-service education and SLP
referral guides).
Recommendation four:  Referral charts/guides need to be implemented to identify when and how SLP services can
Establishing appropriate referral be integrated to palliative care.
procedures for SLP intervention  Referral guides should be available to educate the medical/palliative care team, the client
and the family.
 Referral guide should be inclusive for both potential swallowing and
communication deficits.
Recommendation five:  Palliative care across the lifespan needs to be introduced into the SLP tertiary curriculum.
Integrating palliative care within  SLP students need to be aware of the swallowing and cognitive/communication
SLP tertiary education. considerations in the assessment and management for individuals nearing end of life.
 SLP students need be aware of and capable of discussing topics surrounding death, dying,
loss and grief.
 Training should be delivered via a multifaceted approach – including, lectures, self-
directed learning, problem-based learning and supervised clinical rotations.
Recommendation six:  Graduate SLPs or SLPs who are new to the field of palliative care should receive adequate
Education and supervision for SLP training and supervision.
new to the field of palliative care  Supervision should be carried out under the guidance of an experienced SLP in
palliative care.
 Education should include assessment and management of swallowing, cognition and
communication in persons in palliative cares, becoming familiar with palliative trajectories
and competence in discussing end of life swallowing and communication considerations
with the client, family and palliative care team.
Recommendation seven:  SLPs should be familiar with the skill-set and knowledge that each discipline brings into a
Incorporating SLP observations and palliative care team.
interventions into the overall  Goals should be holistic and person-centred in nature and support or compliment the
multidisciplinary/palliative overall palliative care team goals.
team goals  SLPs should raise concerns if a client’s swallowing and/or communication deficits indicate
a deteriorating or serious decline in health and advocate for palliative care (if required).
Recommendation eight:  SLPs should highlight to the palliative care team, client and family the importance of
Focussing assessment and therapy to swallowing and communication intervention at end of life.
include both cognitive-communication  Assessment and intervention (if indicated) should address all aspects of swallowing and
and swallowing interventions communication/cognition.
 Palliative care team should also be made aware of how the SLP can offer expertise to
support clients in both of these areas.
Recommendation nine:  SLPs should be prepared that a traditional “hands-on” approach may not always be
Integration of SLPs – a practical and indicated for palliative clients.
consultative approach  SLPs should be able to provide communication and swallowing support via a consultative
or educational role for either the palliative care team, the client or the family.
Recommendation ten:  SLPs should be aware of their own potential “triggers” when entering an emotive work
Professional self-care considerations setting such as palliative care.
for SLPs working in palliative care  SLPs should have a self-care plan in place to manage their own mental and physical health
(e.g. via debriefing with colleagues, mindfulness and calming techniques, consultations
with counselling or pastoral/spiritual services etc.) in order to avoid “professional
burn-out”.
The role of speech-language pathologists in adult palliative care within the Australian context.
12 L. Chahda et al.

the wider health care community appears to be pre- Acknowledgements


dominantly limited with regard to the capabilities and
The researchers wish to acknowledge the support of
adaptability of SLP skills to palliative care settings –
Associate Professor Bruce Rumbold, OAM, Director
which can, in-turn, prevent SLPs from securing a
of the Public Health Palliative Care Unit, La Trobe
fundamental role among the palliative care team. In University, Melbourne, Australia.
part, this is because SLPs themselves have not clearly
identified their role and expectations within the pal-
Disclosure statement
liative care setting. This is reinforced by the fact that
there is still limited research that is published or avail- The authors declare that the research was conducted
able resources identifying standardised protocols and in the absence of any commercial or financial inter-
specific procedures regarding the clinical scope and ests that could be construed as a potential conflict
role of SLPs in palliative care contexts (Chahda et al., of interest.
2017; Kelly et al., 2018; Krikheli, Carey et al., 2018).
Additionally, the role of SLPs in adult palliative ORCID
care is inhibited by the limited professional prepar-
Laura Chahda http://orcid.org/0000-0002-
ation in managing palliative care clients, ongoing edu-
9430-5205
cation constraints at a tertiary level, and ambiguous
Lindsay B. Carey http://orcid.org/0000-0003-
ethical and legal considerations (Kelly et al., 2016).
1120-7798
While it has been noted that there are generic pallia- Bernice A. Mathisen http://orcid.org/0000-0001-
tive care resources available to assist allied health 5568-2051
clinicians (e.g. Gravier, 2019), nevertheless, there is Travis Threats http://orcid.org/0000-0002-
still currently no certified publicly available clinical 0463-4268
practice guidelines pertaining to the role of SLPs in
palliative care. The construction of official clinical
References
practice guidelines is required to understand and
cement the SLP role into palliative care. Abel, J., Walter, T., Carey, L.B., Rosenberg, J., Noonan, K.,
Horsfall, D., … Morris, D. (2013). Circles of care: Should
In order to establish the role of SLPs in palliative
community development redefine the practice of palliative
care and to change the current culture of excluding care?. BMJ Supportive and Palliative Care, 3, 383–388. doi:10.
SLPs or preventing SLPs from engaging in palliative 1136/bmjspcare-2012-000359
care scenarios, several changes need to be actioned. Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a
Based upon the evidence gained from this study, a methodological framework. International Journal of Social
Research Methodology, 8, 19–32. doi:10.1080/
number of actionable recommendations were deter- 1364557032000119616
mined by the researchers and are summarised in Australian Bureau of Statistics. (2016). Population by age and sex:
Table VI. Taking into account this study’s findings Australia, states and territories. Canberra: Commwealth
and the implementation of recommendations as Government of Australia.
Australian Institute of Health and Welfare. (2016). Australian
specified, the SLP profession should be considered Burden of Disease Study: impact and causes of illness and death
on the cusp of an innovative and exciting era to assist in Australia 2011. Australian Burden of Disease Study series
in the advancement of SLP practice in adult pallia- no. 3. Cat. no. BOD 4. Canberra: Commonwealth
tive care. Government of Australia.
Bryman, A. Social research methods (3rd ed.). 2015. Oxford:
Oxford University Press.
Note Carey-Sargeant, C.L., & Carey, L.B. (2012). Peer group consult-
ation. Journal of Clinical Practice in Speech Language Pathology,
1. Some tertiary courses offer electives to health science 14, 58–63. ISSN:2200 0259
Carr, D.D. (2005). The case manager’s role in optimising acute
students in topics such as “Death, Dying and Grief”,
rehabilitation services. Lippincott’s Case Management, 10,
“Death Studies” or “Death, Dying and Bereavement” (e.g., 190–200.
Taught by the Palliative Care Unit, La Trobe University, at Caty, M., Kinsella, E.A., & Doyle, P.C. (2015). Reflective prac-
Melbourne and Bendigo Campus). tice in speech-language pathology: A scoping review.
International Journal of Speech-Language Pathology, 17,
411–420. doi:10.3109/17549507.2014.979870
Chahda, L., Mathisen, B.A., & Carey, L.B. (2016). The role of
speech-language pathologists in adult palliative care. Speech
Ethical approval Pathology Australia National Conference: Making Waves.
15–18 May, The Crown, Perth, Western Australia. https://
This research was approved by the La Trobe www.researchgate.net/publication/302888439
University Human Research Ethics Committee (S15/ Chahda, L., Mathisen, B.A., & Carey, L.B. (2017). The role of
244) in compliance with the (Australian) National speech-language pathologists in adult palliative care.
International Journal of Speech-Language Pathology, 19, 58–68.
Statement on Ethical Conduct in Human Research,
doi:10.1080/17549507.2016.1241301
Canberra: National Health and Medical Research Chen, L.M., Farwell, W.R., & Jha, A.K. (2009). Primary care
Council (NHMRC, 2007). visit duration and quality: Does good care take longer?
SLP and adult palliative care 13

Archives of Internal Medicine, 169, 1866–1872. doi:10.1001/ International Journal of Language and Communication Disorders,
archinternmed.2009.341 46, 273–285. doi:10.3109/13682822.2010.495739
Collis, J., & Bloch, S. (2012). Survey of UK speech and lan- Mathisen, B., Carey, L., Carey-Sargeant, C., Webb, G., Miller,
guage therapists’ assessment and treatment practices for peo- C.J., & Krikheli, L. (2015). Religion, spirituality and speech-
ple with progressive dysarthria. International Journal of language pathology: A viewpoint for ensuring patient-centred
Language and Communication Disorders, 47, 725–737. doi:10. holistic care. Journal of Religion and Health, 54, 2309–2323.
1111/j.1460-6984.2012.00183.x doi:10.1007/s10943-015-0001-1
DeLegge, M.H. (2009). Tube feeding in patients with dementia: Mathisen, B.A., & Threats, T. (2018). Speech-language path-
Where are we? Nutrition in Clinical Practice, 24, 214–216. doi: ology and spiritual care. In L.B. Carey & B.A. Mathisen
10.1177/0884533609332006 (Eds.), Spiritual care for allied health practice: A person-centered
Eckman, S., & Roe, J. (2005). Speech and language therapists in approach [Chapter 2]. London: Jessica Kingsley Publishers.
palliative care: what do we have to offer? International Journal doi:10.4225/22/5ae170cd8a711
of Palliative Nursing, 11, 179–181. doi:10.12968/ijpn.2005.11. McHugh, M.L. (2012). Inter-rater reliability: The Kappa statis-
4.28783
tic. Biochemia Medica, 22, 276–282. doi:10.11613/BM.2012.
Frost, M. (2001). The role of physical, occupational, and speech
031
therapy in hospice: patient empowerment. American Journal
McNamara, E.P., & Kennedy, N.P. (2001). Tube feeding
of Hospice & Palliative Medicine, 18, 397–402. doi:10.1177/
patients with advanced dementia: An ethical dilemma.
104990910101800609
Proceedings of the Nutrition Society, 60, 179–185. doi:10.1079/
Gravier, S. (2019). Palliative care and how evidence supports
PNS200083
speech pathologists who care for people at end of life. Speak
Minichiello, V., Aroni, R., Timewell, E., & Alexander, L.
out, June, 20–21.
Groher, M.E., & Groher, T.P. (2012). When safe oral feeding is (1996). In-depth interviewing (2nd ed.). Melbourne: Addison
threatened end-of-life options and decisions. Topics in Wesley Longman Australia Pty Ltd.
Language Disorders, 32, 149–167. doi:10.1097/TLD. Morgan, D., Rawlings, D., Button, E., & Tieman, J. (2019).
0b013e3182543547 Allied health clinicians’ understanding of palliative care as it
Hawksley, R., Ludlow, F., Buttimer, H., & Bloch, S. (2017). relates to patients, caregivers, and health clinicians: A cross-
Communication disorders in palliative care: Investigating the sectional survey. Journal of Allied Health, 48, 127–133.
views, attitudes and beliefs of speech and language therapists. NHMRC. (2007). National statement on ethical conduct in human
International Journal of Palliative Nursing, 23, 543–551. doi: research. Canberra: National Health and Medical Research
10.12968/ijpn.2017.23.11.543 Council.
IBM SPSS. (2017). Statistical Package for the Social Sciences. Pascoe, A., Breen, L.J., & Cocks, N. (2018). What is needed to
Armonk, New York: International Buisness Machines. prepare speech pathologists to work in palliative care?.
Kane-Miller, C., & Willging, J.P. (2012). Making every moment International Journal of Language and Communication Disorders,
count. ASHA Leader, 17, 8–11. doi:10.1044/leader.FTR1. 2, 1–8.
17052012.8 Pollens, R. (2012). Integrating speech-language pathology serv-
Kelly, K., Cumming, S., Corry, A., Gilsenan, K., Tamone, C., ices in palliative end-of-life care. Topics in Language Disorders,
Vella, K., & Bogaardt, H. (2016). The role of speech-lan- 32, 137–148. doi:10.1097/TLD.0b013e3182543533
guage pathologists in palliative care: Where are we now? A Pollens, R. (2004). Role of the speech-language pathologist in
review of the literature. Progress in Palliative Care, 24, palliative hospice care. Journal of Palliative Medicine, 7,
315–323. doi:10.1080/09699260.2016.1141745 694–702. doi:10.1089/jpm.2004.7.694
Kelly, K., Cumming, S., Kenny, B., Smith-Merry, J., & QSC. (2002). Qualtrics. Washington, DC: Qualtrics Software
Bogaardt, H. (2018). Getting comfortable with “comfort Company.
feeding”: An exploration of legal and ethical aspects of the Radtke, J., Baumann, B., Garrett, K., & Happ, M.B. (2011).
Australian speech-language pathologist’s role in palliative dys- Listening to the voiceless patient: Case reports in assisted
phagia care. International Journal of Speech-Language communication to the intensive care unit. Journal of Palliative
Pathology, 20, 371–379. doi:10.1080/17549507.2018. Medicine, 14, 791–795. doi:10.1089/jpm.2010.0313
1448895 Roe, J.W., & Leslie, P. (2010). Beginning of the end? Ending the
Krikheli, L., Carey, L.B., Huynh, C.C., & Tresca, C.S. (2017). therapeutic relationship in palliative care. International Journal
Use of alternative and augmentative communication (AAC) by of Speech-Language Pathology, 12, 304–308. doi:10.3109/
speech-language pathologists and other allied health professionals
17549507.2010.485330
in palliative and end-of-life care: An exploratory scoping review.
Roe, J.W., Leslie, P., & Drinnan, M.J. (2007). Oropharyngeal
Melbourne: Palliative Care Unit, La Trobe University.
dysphagia: The experience of patients with non-head and
Krikheli, L., Mathisen, B.A., & Carey, L.B. (2018). Speech-lan-
neck cancers receiving specialist palliative care. Palliative
guage pathology in paediatric palliative care: A scoping review
Medicine, 21, 567–574. doi:10.1177/0269216307082656
of role and practice. International Journal of Speech-Language
Strauss, A., & Corbin, J.M. (1997). Grounded theory in practice.
Pathology, 20, 541–553. doi:10.1080/17549507.2017.
Sage: New York.
1337225
Salt, N., Davies, S., & Wilkinson, S. (1999). The contribution of
Krikheli, L., Carey, L.B., Mathisen, B.A., Erickson, S., &
Carey-Sargeant, C.L. (2018). Speech-language pathologists speech and language therapy to palliative care. European
in paediatric palliative care: A Delphi study protocol. BMJ Journal of Palliative Care, 6, 126–129.
Supportive and Palliative Care (Online), 1–7. doi:10.1136/ SPA. (2019). The role of the speech pathologist in supporting
bmjspcare-2018-001667 informed choice and shared decision making in dysphagia:
Lambert, H. (2012). The allied health care professional’s role in Working with ‘risk feeding’. Melbourne: Speech Pathology
assisting medical decision making at the end of life. Topics in Australia
Language Disorders, 32, 119–136. doi:10.1097/TLD. Smith, H., & Kenny, B. (2015). A speech-language perspective
0b013e318254d321 on ‘doing good’ in end-of-life care for people with advanced
Manderson, L., & Warren, N. (2010). The art of (re)learning to dementia. Journal of Clinical Practice in Speech-Language
walk: trust on the rehabilitation ward. Qualitative Health Pathology, 17, 98–103.
Research, 20, 1418–1432. doi:10.1177/1049732310373105 Toner, M.A., & Shadden, B.B. (2012). Foreword: End-of-life
Mathisen, B.A., Yates, P., & Crofts, P. (2011). Palliative care care for adults: What speech-language pathologists should
curriculum for speech-language pathology students. know. Topics in Language Disorders, 32, 107–110.

You might also like